Parkinsonism - Road to Diagnosis

PD + Insomnia + Stress = Disaster

2008-08-14T18:40:00.000-07:00

I learned a very valuable lesson on Monday, and I think it is important enough to share. Most of us with Parkinson’s Disease know that stress and not getting enough sleep can have adverse affects on those of us who have Parkinson’s Disease.

Most days I lead a pretty slow, non-eventful life. Many would think that the word “boring” probably best describes my life, especially since we live in a fast-paced, never slow down world. However, I structured my life to be as stress free as possible due to Parkinson’s Disease; a life that people without the disease would probably find boring to the highest degree. In my world, even my restructured, slow paced lifestyle can still hold challenges that are unexpected, so “boring” allows me to plan or cancel activities without having a negative impact on my husband’s life or mine.

As many are aware, people with Parkinson’s Disease can have sleep related disorders as part of their list of symptoms. Once upon a time, long before Parkinson’s Disease entered my life, I could fall asleep as soon as my head hit the pillow each night and sleep straight through until morning. Just like all of the other symptoms of this disease, my ability to get a good night’s sleep to being lucky if I am able to sleep for a few hours at night, came on very gradually. In fact, it was not until I began doing research about Parkinson’s Disease that I began to realize that my increasing insomnia was more than likely linked to the disease.

In addition, when I am able to get into a deep enough sleep and dream, I tend to act out those dreams physically. Therefore, if I am having a dream / nightmare that someone is attacking me, and I am defending myself, it is actually my husband getting kicked and hit, rather than the attacker in my dream. Although I never made it into REM Sleep during a sleep study, based upon my husband’s description of his experiences getting consistently pummeled by me while I am obviously still asleep, my Movement Disorder Specialist thinks it is safe to presume that I have REM Behavior Sleep Disorder. She had prescribed Clonazepam for this and because it does have a sedating effect, she thought that this might also help with the insomnia. It did work for the REM Behavior Sleep Disorder, but the insomnia continued.

During my last visit with my MDS prior to my spinal surgery, we had decided that we would wait until after my surgery to pursue a very small Sinemet increase as well as deal with the insomnia. This would allow me to deal with the symptoms that were related to the herniated disc through having the necessary surgery, and she and I would be able to better decide what changes or decisions needed to be addressed for my Parkinson’s.

As I have previously written, I did have the spinal surgery which was a success. It alleviated all of the symptoms that I believed were attributed to the disc herniation. It left me confident that any changes or decisions that the MDS and I would discuss on September the 1st would be relative to Parkinson’s Disease related symptoms only.

Aside from the surgery, there have been a number of unexpected stressors that have popped up within the last few months. It almost seemed that as soon as my husband and I dealt with one issue, immediately something new and unexpected would come up. I know that sometimes things like that happen, but it just appeared like it was one thing after another, with no end in sight. In addition the things that were falling into our laps were things that you would never expect or be prepared for.

I am certain that the stressful events and the insomnia combined, feeding off of one another, increased the magnitude of their effects within my body and on the disease. Of course I could not see this during the time all of this was occurring. All I saw was that I was becoming an emotional wreck and the insomnia, which was already bad, seemed to be getting worse. I had learned to deal with the insomnia, which almost had a predictable pattern, although I now realize that it was not the most effective way to deal with it. I basically slept when I could, regardless of the time of day. It appeared that I would have three bad nights, in which I would then nap during the day as necessary. By the fourth night my body would be so exhausted from lack of sleep and broken sleep, I would then sleep soundly for about 7 hours. Then the cycle would repeat itself. I thought of this cycle as more than an inconvenience than anything else.

I now firmly believe that the cumulative effects of my problems with sleep combined with the recent additional stressors led to a complete malfunction that could have potentially been dangerous. Sunday evening I was at the end of one of these insomnia cycles, so I presumed I would sleep because of the built up exhaustion. Instead, I only was able to get two hours worth of sleep. In addition, when I went to lie down on Sunday night, I felt as if I was not getting enough air or I was not breathing deeply.

Monday morning I was a wreck. My husband was doing some work from home, so I told him that I was going to try to lie back down. I also told him that I felt like I was breathing more shallow than normal. Since I had always been able to somewhat make up sleep that I would lose at night through daytime naps, I presumed I would be able to sleep. Again, I was wrong. Not only was I unable to sleep or even dose off briefly, I now felt certain that my breathing was not normal. Something told me that if I did not get some sleep soon, I would probably end up in the emergency room.

My husband left for work, and I attempted a few more times to try to get some sleep without any success. Finally, I decided to call my GP and let one of the office gals know what was going on. Since my GP had prior knowledge of the insomnia, I opted to call his office rather than my MDS, because the gals who work in my GP’s office are really good about getting prescriptions called in quickly when necessary. I explained exactly what was going on, and by the end of the day my GP called in a prescription for Ambien.

I called my husband to see if he could pick up the prescription for me on his way home from work, because I knew there was no way that I would be able to drive safely. He was already on his way home, so he stopped in at home first, and then went to pick up the prescription.

Because I was very concerned about my breathing, rather than immediately take the Ambien and go to sleep, I waited until 9:00 P.M. so that my husband and I could go to bed together. I wanted him to watch me for a while after I fell asleep to make sure that everything was okay. I know from the sleep study that I do have mild hypopnea during sleep, which basically means I breathe shallow during sleep which causes nocturnal arousals that I am not aware of. It is similar to sleep apnea in the sense that it does disrupt sleep without the sleeper being aware it is occurring, but I do not stop breathing altogether. Knowing that I have this mild issue, I just wanted to play it safe, since I could actually feel this shallow breathing while awake, I presume as a side effect of sleep deprivation.

Tuesday morning I woke up after sleeping for ten hours without any interruptions that I am aware of. I still felt tired, so I took my morning medications, and I fell back to sleep for an additional two hours.

I have taken the Ambien both Tuesday and Wednesday night before bed, and both nights I have slept between nine and ten hours without any known interruptions. For the first time in many years, I am getting restful sleep. The breathing problems that I felt might lead me to the emergency room on Monday have subsided. It appears that I feel a little better each day following a full night’s sleep.

Leading up to this “crash” on Monday, I was starting to really wonder if I was slowly losing my mind. My emotions were running higher and higher, and I was having more difficulties with concentration than I had become accustomed to. I thought that I was having some strange spurt of progression in my disease. It was not until my “crash” on Monday, and the changes that have occurred since taking the Ambien, that I now realize that symptom control, rather than a spurt in progression, was the nexus of these issues. I think sometimes even a person who has this disease forgets that there are symptoms not associated to movement, that can become just as debilitating as the movement symptoms that most of us tend to focus on. It was a big wake up call and eye opener for me.

We so often talk about the best control of our symptoms through the medications that we are prescribed. More often than not, we are speaking of the symptoms that involve our movement, such as tremors, bradykinesia, speech, etc. I know that if I am having a good movement day, then I have often believed that this was a good indication that I was addressing all of the issues of my disease appropriately. I now know that addressing the motor symptoms of Parkinson’s Disease is essential, but addressing the non-motor symptoms of Parkinson’s Disease is just as essential. I did not quite understand this fully until now. I now realize and fully intend to become more in tune with the non-motor symptoms that I have, make certain that I address them with my MDS, and treat them as equally important as the motor symptoms that we address.

Another Spinal Surgery Complete

2008-07-26T09:07:00.000-07:00

It has been quite some time since I last posted, and I do apologize. Without going into too much detail, there were some unexpected issues that came up, both PD related and not PD related, that I had to deal with. I am hoping that most of these issues have been laid to rest permanently, so that I may refocus my energies on the “important” things in my life, one of which is this blog.

As I have previously written in other posts, aside from Parkinson’s Disease, I also have multiple spinal problems. I have had a herniated C5-6 disc for about four years, but up until recently was able to control the associated symptoms conservatively. In May I decided that the pain and weakness caused by this problem were becoming no longer tolerable.

On June 10, 2008 I had a cervical fusion done in the hope that some of the issues could be resolved. It was important to find just the right surgeon because of the Parkinson’s Disease. I wanted to insure that the surgeon was familiar with Parkinson’s Disease, so that any risks or issues could be addressed prior to the surgery. My experience with not only the surgeon, but also with the local hospital, turned out to be one of the most pleasant I have ever had.

Prior to surgery, I created a list of all of my Parkinson’s Disease medications, both prescription and over the counter, and provided both the surgeon and the hospital with this list. I also took all of my medications with me on the day of the surgery. This worked very well, because one of the medication that I needed to re-start after the surgery was Azilect. I had to come off the Azilect prior to surgery, because it could have conflicted with some of the drugs used during anesthesia. I found that the hospital and surgeon made certain that I received my medications exactly as needed. In addition, because I had brought my medications with me, I was able to take the Azilect, even though the hospital pharmacy did not carry that medication.

In addition to providing information about my medications, I also made sure that the hospital and surgeon knew exactly how my body reacts after surgery. One of my main concerns is that it appears that my digestive system seems to have a difficult time functioning properly after anesthesia. Because of this, I requested that the hospital not serve me any “solid” food after the surgery and would allow me to get up and walk around which encourages the body’s functions to return to normal more quickly. Again, the hospital and surgeon took this information into consideration, and my digestive system had little opportunity to “shut down” completely. It was still more sluggish than I believe most non-PD patients experience, but it did resume to its “normal” pre-surgery function without any real problems within about a week’s time.

I cannot emphasize enough the importance of making sure that everyone who will be involved in your medical care during and after a surgical procedure, has as much information in their hands prior to that surgery. Because I provided this information in writing, there was little room for misinterpretation with respect to my medical condition and needs.
Again, I do apologize for being away for so long. In the next few days I will do my best to answer any comments that have been left and give additional update on other issue that have kept me away for this period of time. My thoughts are always with my fellow bloggers and everyone else out there who is just looking for answers. God Bless to all.

Pesticides and Parkinson’s disease

2008-03-31T08:56:00.000-07:00

It seems like lately there have been numerous articles about the possible connection of pesticides and Parkinson’s disease. Additionally, there have been numerous articles on the role that genetics plays with respect to Parkinson’s disease. My husband is always saying that I have a “why” personality. What he means is that I do not just want to know that I have a diagnosis of PD, but I also want to know why I have PD. This “why” personality does not just pertain to PD, but it applies to any circumstance that occurs in my life. I have always wanted to know why something happens, or the nexus of why something occurs. It is often difficult for me to accept that no reason exists for something that occurs in life.

Keeping all of this in mind, I started recounting my years as a child. I tried to recall if there were any circumstances that could have occurred that may have been part of the reason that I developed PD. I thought I would look at the pesticide issue first, because the genetic portion is much more in depth.

As a child, I do recall that we spent a lot of time with my aunt and uncle and another aunt and uncle who lived in a community which had a potential problem with the drinking water. In fact, whenever we stayed or visited with either family, we always drank bottled water. Later, both families would eventually be part of a class action lawsuit and receive a monetary judgment as a result of the lawsuit. There was definitely contamination of the water due to a biohazard dumpsite.

Because we spent a great deal of time with both families, I began to wonder if drinking the bottled water was enough to insure that potential harm did not occur as a result of the tainted water. There were many times that I spent the night or even longer with one of the families. My cousins and I would run through the sprinklers or sit in a children’s pool that was filled with this water. We showered or bathed with this water. Could this tainted water, which did include pesticides, have gotten into my system and had an impact? It is a very interesting question, which I am uncertain there is an answer for. Additionally, I have never cared much for bottled water, so I know there were times that I did drink the tap water. It did not taste funny as I recall. I also do not recall how often I might have drunk from the tap despite the warnings from my aunts and uncles.

We used to have many pets when I was a child. When you have multiple pets, the likelihood of fleas is high. As adults we would recount with laughter how our house became so infested with fleas one year, that you could actually see the fleas jumping out of the carpet or couch as we sat on the couch watching television. After my dad had a nightmare that fleas were biting his ears, resulting in him falling out of bed onto the floor in the middle of the night, my dad took measures to “get rid of the fleas”. We were allowed to keep one dog and two cats. The rest of the animals were given away to various friends.

Reducing the number of pets in our household was only the first measure that was taken to rid the house of fleas. The final measure that my dad took was to spray a commercial grade pesticide throughout the house. I do not know what chemical was used, but it did take care of the flea infestation. I do recall that this chemical was sprayed on all of the carpeting, couches, and our beds. Anything that was made of fabric was sprayed, almost to the point of saturation. I also believe that he re-sprayed everything a few weeks later, just to be sure that there were absolutely no more fleas.

Thinking about it now, maybe the funny events surrounding the flea infestation were not as funny as we once believed. I now wonder if this type of direct and abundant use of a pesticide inside of our house could have been another contributing factor. Additionally, I was very much a tomboy as a child, so it was very common for me to roll around on grass during games of tackle football with the neighborhood kids. It is difficult to say what types of pesticides that neighbors may have used in their yards or the city may have used in the park across the street from our house.

Although exposure to pesticides may in fact contribute to the future development of PD, I tend to believe that a person may need to be predisposed genetically for this to occur. I believe that if PD had only once source or reason for its development, then we would already have far more answers than we do now and be closer to a cure.

I have done some very extensive research into various genes that are supposedly connected to the development of Parkinson’s disease as well as other various conditions. If I am interpreting this information correctly, then Parkinson’s disease may have types that are purely genetic, but may also have types that are a combination of genetics and outside environmental factors.

In my next post I will write about the genetic research I did as it relates to various conditions in my family’s history. I found some very interesting parallels between family history and Parkinson’s disease. I would find it additionally interesting to see if other people find similar parallels within their own family history, especially those of us who appear to be the first member of a family to be diagnosed with PD. This particular post will be difficult to write, because of the scientific nature of the subject. God willing, I will be able to explain the research I did in an easy to understand format.

The Importance of Having an Advocate

2008-03-31T08:49:00.000-07:00

There were many times along the road to diagnosis when just the thought of seeing a new specialist would bring thoughts of fear and dread. On one hand, the desire to find answers would give me hope; on the other hand, the thought of being brushed off would bring intense anxiety, dread, fear, etc. Going through any diagnosis process can create an emotional yo-yo effect that is often worse than the symptoms being seen for.

For many years I went to my appointments with my doctors alone, armed with my list of questions and previous records. My ex-husband accompanied me to two appointments, because I was hoping for back-up when describing my symptoms. During the first appointment, he lost his temper and stormed out of my doctor’s office. This surprised me, because this was my General Practitioner who later retired, and I always felt he had my best interests in mind. The second visit he attended was when I saw a neurologist who stated that my symptoms were most likely due to depression, but that I did not realize that I was depressed. Although my second husband did not lose his temper this time, neither did he question or outright state that the neurologist’s opinion was out of line. I left that appointment in tears. My ex-husband just stated that I should see a different neurologist, and that he was not interested in going to any future appointments.

As time moved on, unfortunately my marriage did end. As I have written in previous posts, I am remarried to a man who has played an important role in finally receiving a diagnosis. Not only did my husband insist on being at every doctor’s appointment, but he did hours of research, so that he could competently talk with the many doctors we saw. It was my husband who was able to connect the dots of my symptoms. He had to ability to explain to the doctors how my symptoms resembled the symptoms that his mother experienced with Parkinson’s Disease. He has often been my voice when I have had difficulties explaining my perspectives, and his keen observations of my health changes and his ability to verbalize his observations, were the catalyst that increased the momentum in getting to a diagnosis. I truly believe that had he not taken the initiative to support me in this manner, I may have not received a diagnosis for at least two more years.

An advocate can serve many purposes when visiting with a doctor. This person can serve as a second set of ears, offer observations that may not be evident during the actual exam, and can be a second voice when asking questions during the visit. Most importantly, an advocate can be a great comfort to the patient during these very stressful visits. An advocate should be someone who sees you often enough and can fully describe the symptoms or changes that he or she has observed. In addition, it does help if this person is not easily intimidated, especially if the patient is dealing with a doctor who does not like to be challenged or questioned.

A spouse or significant other can obviously be a great choice as an advocate. Unfortunately, there are those times when a spouse or significant other may not be the best choice due to various circumstances. Other candidates can include a close relative or friend who sees you on a regular basis, and who has known you for many years. This person will have the ability to describe you and your lifestyle prior to and after the onset of symptoms. Additionally, this person should be someone who has a deep desire and level of concern that is sufficient enough to compel them to become a partner in your search for a diagnosis. This requires that they be willing to educate themselves along side you, so that they may be an efficient source of support in the doctor’s office environment. Here are some examples of how my husband acted as an advocate:

1. Researched my symptoms and possible causes

2. Made the association between my symptoms and Parkinson’s Disease based on personal
experience, as well as follow-up internet research; outlined this observation in a manner to my General Practitioner which enabled me to try a trial prescription of Sinemet

3. Created a list to submit to the doctors that included his observations of my symptoms, abilities, etc. that outlined a comparison between what he observed prior to symptoms and after the symptoms began.

4. Readily spoke up, based on facts known through research, when a doctor stated something contrary to those known facts.

5.Often spoke on my behalf if I became too “emotional” during the visit, in order to insure that the doctor did not arbitrarily throw out a mental health diagnosis, based upon the fact that I had become emotional.

6. Often asked questions that I either forgot to ask, or that he felt were important enough to ask; often these were questions I had not thought about asking.

7. Never wavered in his opinion or responses, especially if a doctor was going down a trail that had already been covered or appeared to go down the mental health road.

8. Never allowed me to personally throw in the towel after an especially emotional or disappointing visit; continually reminded me that the answers were already there, and that the only missing factor was the appropriate specialist.

I have found that having an advocate with me changed the dynamics of a visit with the doctor in many positive ways. Because the diagnosis process is so very stressful, just having the comfort of knowing that someone who cares about you is by your side, lessens the tension and fear factor. I also notice that a doctor will often pay more attention to what the advocate has to say than the patient, especially when a doctor wants to lean toward a mental health related diagnosis. A strong advocate can actually sway the opinion of the doctor in a more appropriate direction, especially if the advocate is well spoken and speaks purely in factual terms. I remember once when I had to see a specialist alone, because my husband had a business meeting and was unable to attend. That particular specialist seemed genuinely disappointed that my husband was not with me, because they had shared in depth discussions on PD related illnesses on previous visits. My husband had a better relationship with my specialist than I did, because he seemed to be able to talk the doctor’s talk, but this was a situation that was to my benefit. Although this doctor was unable to provide me with a confirming diagnosis, I believe that the interactions with my husband helped to motivate him more and to take a greater interest in trying to help me with finding a diagnosis.

Now that I have a confirmed diagnosis and a core group of medical doctors that I completely trust and feel comfortable with, my husband no longer has to go with me for my visits. He seemed hesitant to release his role as advocate at first, but he now understands that his role as advocate is no longer necessary at this time. He now plays the role of advocate, but only behind the scenes. Whenever I have an appointment, we usually talk about and make a list of issues that I need to discuss with the doctor. Thus far, this change has proven to be beneficial. I have enough confidence to deal with my doctors alone, and he no longer has to miss time from work to attend every appointment. Of course, he is always ready to reactivate his role as advocate if any future issues arise that require this action.

He still continues to be my main source of comfort, support and encouragement when I am having a bad day. In many ways, he is not just my life partner, but he is my partner in Parkinson’s Disease. His only sadness is that he cannot “fix” for me what is broken. Just knowing he walks beside me during this journey, is more than I could ever ask for. Yes, a cure would be wonderful. Since that is not yet an option, I have the second best option. I have someone in my life who loves me enough to take on my disease with the same intensity that he would if he were the one who had it. I am very lucky to have that in my life, and I thank the Lord daily for providing me with my partner.

Definition of a Patient: Customer

2008-03-18T10:18:00.000-07:00

It was in 1999 when there was that first hint that something just was not right. Whether that hint was related to the Parkinson’s Disease or the Degenerative Disc Disease is a question that will probably never have an answer. Until 1999 the only real medical related problems I ever experienced were pregnancy related.

In the long run, the cause of those initial symptoms is not important. The lessons that I have learned throughout the last nine years are priceless. The lessons did not come without a price. The price of those lessons included frustration, distrust, lack of medical support, insufficient answers, etc. It appeared to be a very slow learning process.

I believe that many of us are under the impression that when we visit a doctor, he / she will be able and willing to provide us with the answers we are searching for. I know that I had blind faith in doctors for many years. After all, they have spent many years in college and training, so they must know exactly what they are doing when it comes to their profession. Additionally, within the scope of my blind faith, I firmly believed that all doctors truly care about their patients. I was incorrect with respect to all of the above.

Here is the reality of what I now believe through my experiences with the medical community. The practice of medicine is just how it sounds. Although there are thousands of known conditions that have identifiable diagnosis criteria, there are numerous conditions that do not. Therefore, often a patient may have to go from doctor to doctor, trying various treatments, or be told there is nothing physically wrong, until just the right doctor makes just the right observations that leads to a diagnosis. This is unfortunate, but it happens quite often.

I began to realize that the internet held information that patients twenty years ago would have been unable to access without spending hours, days, or weeks inside of a library. Additionally, the internet is quick, and a person can easily find symptoms for most medical conditions without having to be a computer expert or a member of the medical profession. Aside from my husband’s observation and recognition of my symptoms, I would say that the internet was my greatest tool before, during, and after the diagnosis process.

Each time I was sent to a different specialist to rule out a specific condition, I would research that condition on the internet to learn as much as possible about that condition. Additionally, I would also research other conditions that were known to be similar or mimic the condition I was being assessed for. By doing this I had the ability to ask the appropriate questions and also know when a doctor was telling me things that were in contrast to known facts. I was very surprised to find that some doctors will tell a patient something that is not correct, because they presume that the patient does not know or understand the facts.

Although I have previously mentioned the internet and self education, I feel that it is important for patients to know that it is okay to tell a doctor that they disagree with something the doctor says. It is important that the patient be able to back up any disagreement with known facts, rather than just relying on what the patient may have once heard or someone may have once mentioned to him / her.

When a patient does disagree with something a doctor says I have found that there may be one of two basic reactions on the part of the doctor. If the doctor is truly interested in a proper diagnosis and has not made a rush to judgment based on non-factual issues, then the doctor will be open to discussing the disagreement. On the other hand, if the doctor has already decided that the physical symptoms are mental health related or the doctor is just plain arrogant, a patient may receive a rude or condescending response upon stating the disagreement. I have received both types of responses. I have also been cut off in the middle of explaining my position and rushed out of the office.

Before I began to realize that it is okay to disagree with a doctor, I wasted a lot of time going back and forth to doctors who had no real interest in finding the real cause of my problems. I lacked the courage and questioned my right to just walk away from a doctor, who is supposed to know how and want to help me. I had not come to the realization that I did not owe these doctors anything, but in fact, it was they who owed me something. I was a customer seeking out a service. I am a paying customer who should expect to receive the appropriate service that I am paying for. Once I realized this, seeing a doctor is not any different than hiring an electrician, plumber, or hair stylist. They provide a service that the customer pays for, and if they do not perform to the customer’s standards, then their services are no longer necessary.

When I seek the services of a doctor, I now go into an appointment with certain expectations. If those expectations are not met, I do not return to that doctor. Additionally, I do not recommend that doctor to friends, family, or anyone else who may be seeking out a new doctor. Although this may not mean much to the doctor, I believe that somewhere down the line, certain doctors do find that they become the choice of last resort. I personally believe that word of mouth is the best advertising for any business, and word of mouth can also deter patients from seeking the services of those doctors who have not quite figured out that the patient / customer is the most important asset they have.

In the last few years I have had conversations with other patients who will often say that they will give the doctor another chance. Often, they have already given a specific doctor multiple chances, just by paying for the doctor’s services through previous appointments. Sometimes, patients will often keep giving chances to a doctor, because it is very difficult to seek out the services of a new doctor. I finally decided that if by the second visit a doctor is not providing me with the services that I am paying for and expect to receive, that doctor is terminated / fired. If it takes going to two, three, or ten more doctors until I find one that knows how to properly provide service and genuinely cares about my health, then that is exactly what I do. It is absolutely a difficult route to choose. However, the benefits far outweigh the negatives. That is the reason why I have a select group of doctors that I see today, not because they are covered by my insurance or for any other reason, except that I choose to have them as my doctors. They all meet and exceed my expectations that I have for those professionals who play an instrumental role in my current and future health.

Just as I have the choice of which stylist I allow to cover my gray and cut my hair, I also have the choice of which doctors I allow to play a role in my health. Since my health is a much more important aspect in my life than how nice my hair may look, I obviously have certain expectations that a physician must meet that far exceed those that I would expect from a stylist. Just as I am the client / customer of my chosen hair stylist, I am also a client / customer of my physician. For this reason, I should be more willing to terminate my relationship with a physician than with my stylist. This concept has probably been the most important concept that I have learned. Simply stated, the patient is the customer; the doctor is the service provider. When I pay for any service, I expect to get my money’s worth.

The Gift I Received From Parkinson’s Disease

2008-03-18T10:14:00.000-07:00

Well, I must admit that I am just recently coming out of a short “why me” phase. It was short-lived and out of character, and I am now out of my “funk”. I now believe that this “funk” was directly related to the fact that this disease has dramatically changed my life. For some reason, this realization really hit me hard after Christmas, when I realized that the things I have done during the holidays every year in the past, took much more effort and more time for my body to play catch up after the holidays. I basically received an “in your face” lesson from my body, that I have to accept the limitations and learn to adapt to the limits placed on my physical capabilities. Adapting to such limitations is not really that difficult, because there often comes a time when the body just says to stop and rest. Often there is not a choice involved. On the other hand, acceptance does not always come easy, because we must mentally make the choice to acknowledge those limitations and make a conscious decision to embrace the things in life that we are still capable of doing.

When my kids were younger, and I was a single parent, I often dreamed about what I would do if I had all the time in the world to do whatever I wanted to do. During those days which seem so long ago, I was a full time parent who balanced taking care of two children and a full time job. Looking back, I now wonder how I ever managed those hectic days.

I recently came to the realization, that I now have that time that I always dreamed about. Unfortunately, that time was given to be prematurely due to Parkinson’s Disease. If I had to be honest with myself, I would have much rather received this time later in life, much closer to a normal retirement age.

I have changed my perspective on my early retirement, and I now believe that I have been given a gift. In return, I decided that I wanted to do something with that gift that would impact the people in my life that I care about the most.

My grandfather recently passed away, and my mother and her siblings have received old family pictures, some that date back to my grandparents’ grandparents. My grandpa took most of these pictures, as he was a semi-professional photographer. My grandmother, who was a very important person in my life, had passed away in 1991. When both of my grandparents were living, our family was very close knit. When my grandma passed away, that closeness seemed to fall apart. She was the thread that held the fabric of our family together.

When my grandpa found out he was dying, he made it known that he wanted to make peace with family members that he had not been in contact with due to various issues. I was blessed to be able to bring my father and his wife, my sister and her children, and my children to his bedside before his death. I saw it as a final gift to my grandpa and grandma. My son was the most difficult, because I had to arrange for him to come out from Las Vegas. My grandpa had a special relationship with my son, who would call my grandpa often just to say hello, so I knew that it was important for them to see one another before my grandpa passed away. As if he were waiting for him, my grandpa passed away the day after I took my son to see him. I filmed this final visit with my camcorder, which shows the two of them joking back and forth, as they often did.

The gift of time that I have been given, as well as the old photos that are now in our hands, gave me an idea. I decided to create a living legacy of my grandparents by creating a DVD movie with the pictures. This DVD will tell the story through pictures beginning with the oldest family photos through the generation of my children. In essence it will cover six generations. My mother, aunt and I are working on this project as a gift to every family member for Christmas this year. None of us are computer gurus, but my husband has shown me how we can do this using a photo scanner and my trusty computer. In addition, each family member will get a copy of all the photos that are not used in the DVD movie, in the form of CD’s. We decided that it was important for each family member to have copies of all of the pictures, rather than dividing them up among various family members. We also plan to create a master family tree diagram as a reference tool. This will allow a family member, current or future, who may view a picture and name of a person that is unfamiliar, and to be able to look to the diagram to see where this person lies within the family tree.

My sister and I are working on another gift for the family, which consists of converting old 8mm and Super 8 home movies to DVD format. These were home movies that my grandpa took of my mother and her siblings when they were children and home movies that my dad took of us while we were small children. This is a gift that we will not be able to do on our own. My sister and I must find a reputable company to do this for us, and she and I will share the cost of having it done.

Additionally, I am in possession of two 120 minute audio cassettes that my grandma created prior to her death in 1991. Essentially, she spoke into a tape recorder and told her life story from the time she was a small child through adulthood. I plan to try to convert these cassettes into CD’s minus the background noise. My husband believes that this can be done at home, so when I am ready to begin that part of the project, he will assist me with the process. My grandma was one of those people who was loved by everyone who ever knew her, and I believe that hearing her story in her own words and voice is a great addition to the DVD movie of our family history.

Finally, I plan to do a separate but similar project as a gift for my children. I have taped many of their life events using a camcorder, and I have kept just about everything they ever did in school. I plan to create a DVD movie for each child with the camcorder footage, so that each child has a copy of some of the biggest events in their lives. This DVD will also include the numerous pictures I have taken of them throughout their lives. If time allows, I will then scan all of their school papers and burn them to a CD, so that I will always have a copy. Then, I hope to create scrapbooks of the originals for each child. In essence, I want to give each of my children the family history I described above, but I also want them to have a permanent record of their own childhood histories.

Because these are very lofty goals for this year, and due to the day to day changes that occur with Parkinson’s Disease, I will not be disappointed if I am only able to accomplish half of these projects by Christmas. I work on them when I am feeling my best, and often work on them during those nights that I have insomnia. Since it is too difficult to predict when I am at my best, I just work on them when I can. If I were unaffected by Parkinson’s Disease and still working full time, this gift of time would have never been handed to me.

The photos that we have gathered, the home movies we have, and the footage I have of my children were all created to provide memories. If we do not do anything with these photos, film, and footage time will erode them to the point where they will become useless. All of these items can be used to not only highlight our family history, but they can be passed down to future generations as a legacy. I love the idea that my children’s grandchildren may one day receive copies of everything we are creating.

Those of us involved in these projects began working on them last month. I am finding that some of the preparation work can even be done when I am feeling fatigued and resting in my recliner. The time consuming portion for the majority of these projects is having the time and stamina to physically sit at the computer and scan the pictures and put names to those pictures. The amount of time spent doing this task depends entirely on how I feel. Since Christmas is so far off, even if I am able to only spend an hour or thirty minutes per day working on these projects, I believe that I will have a good chance of completing these projects.

It is an absolute fact that Parkinson’s Disease has robbed me of several activities that that I once enjoyed. Physically demanding activities and working outside the home are the two activities that enter my thoughts most often, and I mourn the loss of. On the other hand, Parkinson’s Disease has given me the gift of time, which is something that I have never had in my adult life. This gift of time is allowing me to replace those things that I am no longer able to do with projects that I can do and work around my limitations. This time provides me with no set schedule, no requirement to over-exert myself if I am having a bad day, and offers me the opportunity to give a gift to our entire extended family that will last a lifetime and longer. When I look at it this way, acceptance of my limitations and the changes in my life now take on a new flavor. There is now a little sweetness that has been added to the original bitterness. I guess it all comes down to how we decide to handle what life throws our way.

Uplifting Events This Week

2008-03-17T10:29:00.000-07:00

Hi Friends,

This past week I needed a little pick me up, and there were two events that happened that really did the trick.

As some of you may remember from a previous post, I introduced Diane's blog to you. Diane has Multiple Sclerosis and has a wonderful blog. She not only reaches out to others with Multiple Sclerosis, but she also has a link section to 100 blogs that are written by people with chronic conditions in addition to Multiple Sclerosis. A few examples are links to blogs about cancer, fibromyalgia, mental health, etc. This is an inspirational example about not only how Diane helps those who share her condition, but taking it a step further, she is reaching out to those with other forms of chronic illness.

Additionally, Diane created a unique method of introduction to other blogs. She recently left me a comment that stated that I received an award. When I went to her site this is what I found. This is the exact post from her blog at: http://dj-astellarlife.blogspot.com/

Sunday, March 16, 2008
The Award Goes To:

The envelope please. The winner of the
You Make My Day Award goes to...
Parkinsonism - Road to Diagnosis
"I am a 39 year old female, and I have been diagnosed with Parkinsonism. (Parkinson's Disease or Parkinson's-Plus; yet to be determined) I am married to a wonderful and supportive husband, and I have two children. My daughter is 18 and just graduated from highschool. My son is 14, and is a freshman in highschool. After several years of undiagnosed medical problems, numerous surgeries, at least a dozen doctors, and multiple diagnostic disappointments, I am finally the closest to a diagnosis than I have ever been. It has been a long, frustrating road, but I have gained so much knowledge through my diagnostic journey. I decided to share my experiences, with the hope that it might help other patients avoid the diagnosis pitfalls that I encountered. Whether it is PD or any other chronic illness, if my story and my experiences with the medical community can help just one person obtain that illusive diagnosis more quickly and easily, then my long journey and the knowledge I gained, was well worth it. It is only due to my faith in God and the support of my husband, that I have been able to continue in the struggle to seek a diagnosis, as well as reach out to others like me. "

She then added a link to this blog at the end of the text.

As you can see, her introduction to my blog is not only unique, but it is also eye catching. By inserting my own words from this blog as a reference, she has let her readers know exactly what my blog is all about. If you have the opportunity, it is definitely worth a visit to Diane's blog. Her blog has something for everyone. I want to personally thank Diane for the pick me up she gave me. We all need that in our lives once in a while. I have found that it is the people that I have met through blogging are often the source of encouragement when I need it the most. Thank you again Diane.

On a separate note, I decided to give myself a pick me up last week. As you might recall, in November I rescued a dog from our local animal shelter. She has been a great source of comfort and companionship, especially on those days where the recliner by the fireplace seems to be the place where I need to be. Because Mary Jane has been such a trooper, I thought that she deserved a friend. Although she is a great source comfort to me, I felt that there were times that she may not have been getting enough play time, especially on my "bad" days. Therefore, last Wednesday I went to another local animal shelter and got her a friend. Here is a picture of Mary Jane and her new friend Eldon.

Eldon is quite a bit smaller than Mary Jane, but he does not seem to have a problem when they play or wrestle around. He is 7 pounds compared to her 12.5 pounds. My intuition was correct, and Mary Jane seems to fully enjoy Eldon, although it did take her a few days to get used to the idea of sharing me. In addition, on those days when I just do not have the energy to "play", they have eachother for companionship. Both dogs definitely enjoy sitting with me in the recliner during their down time. The two of them are quite a pair, and I enjoy knowing that Mary Jane has a friend that she can play with anytime she feels the need. Of course, both dogs are extremely spoiled by both my husband and myself.

An Update On My Letter Writing Campaign

2008-03-12T05:22:00.000-07:00

Hi Everyone,

I just wanted to make sure that everyone knows that I am still here. I have finally completed all of the letters to the doctors. I wrote a total of nine doctors. Rather than sending them out one by one, I wanted to make sure that I sent them all at the same time. So, I will be making a trip to the Post Office today.

More than anything, I hope that by writing these letters, doctors may take a step back before presuming that a patient must have mental health problems, because he / she does not fall into a neat little category. Each person is different, and it is well known that Parkinson's Disease appears differently in each individual. No two people with PD will have the same symptoms. Some patients will exhibit slow progression, while others may progress more rapidly than expected. Just as each of us is unique, so is our Parkinson's Disease.

On an additional note, I hope to add a few new posts that may be useful to those who are still trying to find a diagnosis. I did get a bit sidetracked due to some extreme fatigue, as well as trying to get our taxes done. So, although I still fight daily fatigue, I do hope to get back to writing posts that relate back to my original intent for starting this blog.

This blog has opened up many doors for me personally. Through the contacts I have made because of this blog, I have learned so much from each new person I correspond with. Each person seems to touch my life in such a positive manner. These contacts help drive my desire to continue to write and share my experiences.

I will definitely offer an update if I receive any responses from the letters. For now, I am going to attempt to get some sleep, since insomnia has had me up for most of the night.

Blessings to you all.

Two Great New Blogs

2008-02-14T02:19:00.000-08:00

I hope this post finds everyone doing well and in good spirits. I have felt a little better over the last few days which I am very thankful for.

I contacted a fellow blogger after finding her blog and reading it. It is called “Life With Shaky”. It is written by a wife, whose husband has been diagnosed with Parkinson’s Disease. Additionally, her husband recently began writing his own blog called “Shaky’s World”. I believe that their combined blogs give great insight to not only how Parkinson’s Disease affects the person who has it, but how it affects the spouse. With their permissions I am adding links to both of their blogs. I believe it will be interesting and very informative to read about each of their perspectives as time goes on.

On a different note, I have begun writing letters to all of the former doctors that I have seen throughout my entire diagnosis process. I intend to write to doctors who not only were helpful, but especially to those who were not quite so helpful. I think it is important to let the doctors who tried hard to help me, know that I thank them and inform them of my diagnosis. On the flip side, those doctors that were not helpful and sometimes downright arrogant might find it interesting that their depression theories and other theories were incorrect.

I will be including the address for my blog in all of the letters. Hopefully, with the many links provided on this blog, along with my detailed story included on my blog, those doctors might think twice before presuming that a patient’s symptoms are mental health related. Hopefully, they might find that it is much more beneficial and morally correct to take each patient they see seriously. If only one of the doctors that I had a bad experience with takes the time to do a little reading, he or she may find that the negative experiences I had with the medical community are all too common. Although we share knowledge with one another through our blogs, I believe that doctors can gain a little education from our blogs also. This is my hope, and this is what I am currently working on. I will offer further updates on this topic, if I receive any feedback from any of the doctors that I write.

Are There Any Decent Specialists Out There?

2008-02-06T19:46:00.000-08:00

Since my last post I have become enlightened in several ways, so this post will touch on a few different topics.

After the holidays I was hit with a change in my physical symptoms which included excessive fatigue, an increase in daytime sleepiness, drops in my blood pressure, and just a general feeling of lethargy. At first I thought it was due to over-exertion during the holidays. I have had plenty of down time since then, and these changes in symptoms have only improved partially. Adding more salt to my diet has helped with my blood pressure immensely, but the other symptoms are not as improved as I would have hoped. I am now wondering if this is just another new phase or change due to PD that has entered my life that I will just have to adjust to. I will be discussing this with my MDS next month.

I received a comment from Diane on my previous post, and I have exchanged a few emails with her. Diane has a diagnosis of Multiple Sclerosis, and she has a great site that I have added a link to.

Although I write primarily about Parkinson related diseases and dealing with the medical community, these recent emails with Diane reminded me that my main purpose for starting this blog, was to try to help others who are struggling with the medical community, regardless of the type of chronic illness. I was further reminded that in the very beginning of my own search for a diagnosis, I was told that there was a possibility that I might have Multiple Sclerosis, so I have done quite a bit of research in the past on that disease. From what I have read, it is not uncommon for a patient with PD, especially females, to originally be told they may possibly have MS. Additionally, from my own experience, it took approximately three years to completely rule out MS.

Multiple Sclerosis and Parkinson’s Disease are both neurological conditions. I know that in theory, a Movement Disorder Specialist deals with the diagnosis and treatment of PD, and a Neurologist who specializes in Multiple Sclerosis deals with the diagnosis and treatment of MS. I have been to both types of specialists. The neurologist that was originally recommended to me by the MS Society was wonderful, and he did finally rule out MS. On the flip side, I had been examined by a Movement Disorder Specialist who was highly recommended in the Parkinson’s community, and I was told that I was too young to have PD. My own GP and a general Neurologist did more for me during the last two years, than the multitude of specialists that I have come in contact with, not including my current Movement Disorder Specialist, who is awesome. In my experience, the “extra” training that a specialist receives for specific neurological conditions, does not guarantee that a specialist will give you an accurate diagnosis. Additionally, a patient may get lucky when they see a specialist that is referred by specific organizations, or they may be out of luck. I have experienced both scenarios.

So, I will now get to the point. I believe that the best referral for specialists, or any other type of doctor, comes directly from other patients. In earlier posts I mentioned that I had added a link section for specialists that other readers would highly recommend. I began that section by adding the link to the Parkinson’s and Movement Disorder Institute, which is where my Movement Disorder Specialist practices. This section is not limited to Movement Disorder Specialists or Parkinson’s Disease. If you have a general neurologist who diagnosed and treats your neurological condition, who you would highly recommend, then please let me know. If you have a neurologist who specializes in Multiple Sclerosis, but diagnosed and treats your non-MS neurological condition, then get that specialist on the list. My goal is to eventually have at least two neurological related specialists that come highly recommended by you, for each state. These are the specialists, who not only have the knowledge, but also have the desire, concern, and willingness to help both the diagnosed and yet to be diagnosed. These are the specialists that think out of the box, especially since many patients with neurological conditions do not initially fit neatly into a box of predetermined criteria for diagnosis.

Since I began blogging I have learned so much from all of the people I have come in contact with, through their stories and experiences. With each new story I read, I gain new knowledge and insight, not only about Parkinson’s Disease, but about the similar physical, mental and emotional struggles that neurological conditions in general have in common. I just want to say a big “thank you” to those I have met through your stories and to those who I have not met, whose stories I have yet to read. Together, we can all make a difference just by reaching out through our words and our knowledge that we try to share. We are a great support for those who already have a diagnosis, but may even be a greater support for those still seeking a diagnosis. I found this to be true during my diagnosis process. With that being said, let me say once again, if you have a great specialist, please let me know.

Fluctuations In Parkinson’s Disease

2008-01-27T18:11:00.000-08:00

Although the main focus of this blog is to try to assist other people with chronic illnesses to more effectively deal with the medical community, I believe that it is also important to include how chronic illness can affect daily life. Having a chronic illness not only affects the life of the person with the illness, but it also affects the lives of our loved ones.

Since the end of the holiday season I have been dealing with extreme fatigue and low blood pressure, which have literally made it impossible to do many of the things that I can still do, despite having Parkinson’s Disease. I am fortunate that I no longer have to attempt to work, and I have been able to take the time necessary to focus completely on this recent turn of events in my disease. If I were still working at this point, I can honestly say that I would have been completely unable to function in the workforce, regardless of willpower, medications, or positive thinking. These past several weeks have served as a reality check for me in that respect. It is also the reason why I have not made any recent entries to this blog.

It is difficult to pinpoint the exact cause which brought about the changes in my condition. It may have been that I over extended myself during the holiday season. The frequent drops in blood pressure throughout the day could definitely cause extreme fatigue, so I have increased my salt intake to see if that helps. There could be a number of sources, and it is unlikely that I will be able to determine the exact cause for the recent down turn in my physical well-being. I have now come to believe that weekly, daily, hourly, or from minute to minute, that fluctuations in motor and non-motor symptoms of Parkinson’s Disease are just another component of the disease that we must deal with. I can honestly admit that this is one of the most difficult aspects of having Parkinson’s Disease that I deal with.

I am slowly beginning to realize that various circumstances play key roles in the management of this disease. Although I am on the best medication regimen I have ever been on, I know that extra physical activity, stress, and fatigue all affect how well the medications work. I recall two days during the holidays in particular, when I had medication failures due to over-exertion. I went from being “on” to “off” in an instant, before my next scheduled dose of Sinemet was due. I now know that if I physically do anything beyond my “normal” daily routine, that I may have to take the Sinemet at closer intervals. In order to lessen the amount of stress in our lives, my husband and I refrain from activities or circumstances that could contribute to increased stress levels, to the best of our abilities. Sometimes stress is unavoidable, and we deal with its effects as necessary. Fatigue is the one aspect of this disease and the effects it has on my physical well-being, which I am still trying to find a solution for. For now, I take medication each night for (presumed) REM Behavior Sleep Disorder, and I nap as often as needed during the day.

The numerous and continuous changes that occur as a result of Parkinson’s Disease, not only affect me, but also affect my husband. I know that it must be difficult for him to watch me struggle at times and not be able to “fix” the issues that cause the struggles. I must say that I am very blessed to have this man in my life for many reasons. Aside from being over-protective at times, he always seems to handle each new struggle with ease. He never complains when I am too tired to participate in an activity. If I become discouraged about something I am no longer capable of doing, he offers support by just listening or offering ideas for new things to try that I am capable of doing. More important than anything else, he never makes me feel like this disease is a burden in our lives. Parkinson’s Disease is just another aspect of life that we have to deal with. His positive attitude is probably the primary key factor in my own acceptance of this disease and the continuous changes that occur. I know that there are many people who do not have a strong support partner, and I can only imagine how much more difficult it is to face a chronic illness alone.

Extended family members are also affected by my Parkinson’s Disease, but to a lesser degree. Extended family members do not spend every day with me, so they are less likely to see the extent or intensity of this disease. Most of the members of my extended family know that I have Parkinson’s Disease, but they have not witnessed any of the effects. However, there are a few members of my family who I do see on a regular basis. These people have observed enough to key in to whether I am having a good day or a bad day. A few can even point out when my symptoms start to break through or I begin to experience a wearing off effect, even when those symptoms are very subtle. In my opinion, it is the people who I spend the greatest amounts of time with who are affected the most, because they see the symptoms more often. For those I do not see so often, it is like the saying implies, “Out of sight; out of mind”. Again, these are only my opinions, which I base on my own experiences.

Despite the continuous changes that this disease brings into my life and the adjustments to those changes that have to be made, I am thankful for the life that I have. There are far worse diseases out there than Parkinson’s Disease. Although there is not a cure for Parkinson’s Disease yet, there are medications that can help to treat the symptoms. I would much rather have Parkinson’s Disease than to be told I have a condition that has no effective treatment or a condition that is terminal.

Although I am not feeling as well as I did prior to the holidays, I am continuing to try to make little changes to see if I can get back to a happy medium. Hopefully some of these changes will jump kick my body back in gear. Essentially, I am trying to figure out if these recent changes are temporary or a more permanent change with respect to my Parkinson’s Disease. Time will tell. In the interim, I hope to continue writing, even if I am unable to write as often as I would like.

Reflections of 2007

2008-01-01T21:23:00.000-08:00

I hope that 2008 is off to a great start for everyone. There have been so many new and wonderful people that I have met during the past year that either have a diagnosis of a form of Parkinsonism or are still struggling to obtain a diagnosis. My prayer for those who already have a diagnosis is that they have a doctor who continually works with them in order to maintain the best quality of life. For those still struggling for that illusive diagnosis, my prayer is that they will receive those long awaited for answers in 2008.

2007 was a revealing year in my life with respect to my health. After many years, I finally received a confirming diagnosis of Parkinson’s Disease. (Akinetic-Rigid sub-type) As many of you know, although Parkinson’s Disease is chronic and progressive, it was a relief to finally be able to put a name to the condition that has been treated through medication for almost one and a half years.

As I previously stated, 2007 brought many new people into my life. Had I not been aggressively searching for answers to my health, I would have not met these people who have blessed and enriched my life so much. The common tie between all of us is Parkinson’s Disease or another form of Parkinsonism.

Although I now have a wonderful doctor who has helped me to find the best medication balance, which allows me to have fewer breakthroughs; I did find that the rush of the holidays did have an affect on my disease. There were a few times when I let adrenaline kick in, and the affect on my physical condition paid the price. I now realize that I may have to adjust the Sinemet dosages in order to compensate for additional physical activity. There were two nights in particular that my body completely “crashed”, and my symptoms came on full force. This came as a surprise to me when it happened.

Christmas has always been my favorite time of year, and I have always enjoyed the physical portion involved with decorating, baking, cooking, shopping and entertaining. This year I discovered that I do not have the same abilities as I once had in order to celebrate the season in the same ways that I have always done. My husband and I came to the realization that we will need to make some adjustments in how we celebrate and prepare for Christmas in the future. This came as a disappointment to me, but I now understand that such adjustments for holidays are no different than the adjustments that I will continue to have to make throughout my life due to Parkinson’s Disease.

I am not one who normally makes New Year’s Resolutions. However, I have set some goals for 2008 that I hope to be able to accomplish. This blog is one of my top priorities for the coming year. Learning more about the Akinetic-Rigid subtype of Parkinson’s Disease is another priority. Additionally, now that I have a confirmed diagnosis, I finally have the confidence I need to write to those previous doctors that were so quick to dismiss my symptoms throughout the years. Just as those of us who have a form of Parkinsonism are able to help and educate one another about these diseases through our stories, I believe that doctors can learn something from their previous patients that may benefit other patients in the future.

I believe that 2008 is going to be a great year. For all of my many new friends, I want to personally thank you for your prayers, kindness and encouragement. If we all continue working together through our blogs, support groups, and internet support groups, the ability to reach out to more people with a form of Parkinsonism has endless possibilities. May God bless all of you in 2008.

Young Onset Parkinson’s Disease

2007-12-13T09:20:00.000-08:00

I hope this post finds everyone enjoying the holiday season. My husband and I were fortunate to spend Thanksgiving with my sister and her family in Arizona. In addition we were able to visit with my dad and his wife in Tucson, so Thanksgiving turned out to be a great holiday for us.

Last week, after several years of dealing with the unknown, I finally received the answers that I have been searching for. During my last visit with my Movement Disorder Specialist, she stated that her opinion is that I do not have one of the PD-Plus conditions. Her opinion is that I do have idiopathic Parkinson’s Disease. Due to the lack of any significant tremor, it appears that I have the akinetic-rigid form of PD, rather than the tremor dominant form.

I am certain that many people would find this diagnosis to be devastating. As I listened to her diagnosis, I felt as if I were receiving a blessing. Although Parkinson’s Disease is a chronic and progressive disease, the disease itself does not reduce life expectancy. Had I been diagnosed with one of the PD-Plus conditions, my life expectancy could have been reduced significantly. Therefore, this diagnosis is a blessing in my life.

During my journey through the diagnosis process, I have met many others who have blessed my life. Many of those have had a diagnosis for several years, while others were struggling for a diagnosis as I had to. Too many of the people I have met were young people who have been told that they are “too young” for Parkinson’s Disease. Regardless, this diagnosis and the journey to get here, has brought wonderful people into my life. Additionally, now that I know that I have Parkinson’s Disease, this blog becomes all that more important. I hold this belief, because it should not have been as difficult to deal with the medical community as it was, in order to finally receive my diagnosis.

While visiting with my family in Arizona for Thanksgiving I was blessed to be able to personally meet one of my new internet PD friends for the first time. She is also a young person who has been having a difficult time trying to get a firm diagnosis from the medical community. It was wonderful to be able to finally meet this person after the many internet and telephone conversations we have shared.

More recently I was contacted through this blog by a young woman known as Indymama. She has a very unique story that I believe that young onset patients may benefit from. This young lady has a strong family history of Parkinson’s Disease, and she began exhibiting symptoms at the young age of eighteen. Despite her strong family history with this disease, she has been having many difficulties getting the medical community to acknowledge that she could potentially be dealing with Parkinson’s Disease. Like many others, she has been told that she is too young.

Indymama has graciously added a link to my blog on her site. I went to her blogsite and was amazed to read about her history and what she is currently dealing with. Her site is very informative and motivational. With her permission I am adding a link to her blog. It can be found in the “Resources for PD, PD-Plus, & Other Movement Disorders” section titled, “Indymama’s Young Parkinson’s Journey”. I believe you will be very blessed by visiting her site.

Before I close, I want to wish everyone a safe and wonderful Christmas, just in case I do not get a chance to post again before then. As we all know this is a very busy time for most of us each year. To all my new friends that have come into my life, I will continue to keep you in my prayers. You all know who you are, and each one of you have touched my life in ways that I never thought possible. Many blessings to all.

Man's Best Friend

2007-12-03T21:49:00.000-08:00

It has been some time since I have posted, and I do apologize. As I mentioned in my November personal medical journal post, I have been making some changes with my medications. These changes have had beneficial effects, but have also caused some extreme fatigue. I am slowly working my way through the various changes, and I am hoping to post more often.

Through the many years of internet research, I have often read that chronically ill people can benefit from having a pet. I am primarily referring to a dog, otherwise known as man’s best friend. On November the 10th I woke up, and without any real depth prior thought, I headed to one of the local animal shelters.

My husband had expressed concern in the past that having a dog might cause more harm than good. His greatest concern was that I could trip over a small animal and fall, since my balance is not very good. Up until that trip to the animal shelter, we had agreed that a dog was not in my best interest. In fact, my husband did not know that I was going to the animal shelter until I called him from there later that afternoon.

Several dogs were ready for “adoption” that day. Essentially, these dogs already had their shots and had been spayed or neutered. I looked at those dogs first, and I even took one that caught my attention for a short walk. Unfortunately, the little guy would have been more than I could have handled. He did not walk well on a leash, showed little interest in me, and spent the majority of the walk marking his territory.

I then began looking at the dogs that were available for adoption, but could not be released until they were spayed or neutered. As I walked past each kennel, most of the dogs were barking, jumping around, and just trying to get my attention. When I reached one particular kennel, there was a small dog that did not do any of these things. She was just quietly lying in the kennel with the saddest brown eyes I had ever seen. I almost immediately knew that this little dog was supposed to be mine.

It took the staff member a few minutes to get her on a leash, so that I could take her for a walk. She was very timid, and it was evident that she had not been treated well in the past. Within about five minutes, she broke out of her shell, and all she wanted was to be held and pet. She walked on the leash like an old pro, constantly looking up as if to check to see if I was still there. I knew this dog was meant for me.

It was about this same time that I called my husband and told him where I was. I spent the next thirty minutes telling him about this dog and how well behaved and calm she was. I told him that I knew in my heart that this dog was the reason I had been lead to the animal shelter that day. He reluctantly gave his blessing for me to let the shelter know that I was interested in adopting her.

After filling out the required paperwork and paying the fee, essentially this little dog belonged to me. Unfortunately, the animal shelter workers said that I could not take her home until she was spayed, but they told me that I could visit her as often as I wanted. I stayed at the shelter for another thirty minutes, until they closed, and I reluctantly went home. The shelter workers informed me that it would be about two weeks before I could bring her home.

Therefore, I visited with her at the shelter on Monday, Tuesday, and Wednesday. On Thursday, my mom and aunt went with me to the shelter to meet her. Like me, they instantly fell in love with her. As we were getting ready to leave the shelter, one of the workers said she wanted to check the dog, realizing that she had not been checked to see if she had already been spayed, prior to arriving at the shelter. To my surprise, the worker stated that she had absolutely been previously spayed, and she could leave with us that day. I am not sure whether the dog or I was happier about this turn of events. Regardless, on November the 15th she was able to come home with me.

I had no trouble deciding on a name for this little dog. The first time I saw her she looked so sad and pitiful, that she reminded me of a doll that I have that had belonged to my grandma, who died many years ago. This doll’s actual name when sold back in 1965 was “Little Miss No Name”. When my mom graduated from high school, she had bought it for my grandma. My grandma, who I was very close to, cherished that doll when she was alive. I remember how much I loved the doll as a little girl, and my grandma would tell me that I could look at her, but I could not touch her. I used to ask her why the doll was so sad and wore a dress made of burlap. She said that she was sad because her mom had died in a fire when she was eight years old, and she wore a burlap dress because she was very poor. I believe that this doll represented how my grandma felt growing up poor and after her mother died in a fire when she was eight years old. The last time I saw my grandma before she died, she had promised me that I could have “Little Miss No Name” after she passed away. Six months later, “Little Miss No Name” became mine.

I knew that “Little Miss No Name” was much too long for a name, so I named my new four-legged friend Maryjane. Maryjane was my grandma’s name. I was a little worried that some of the family would not understand why I chose the name, but most of them did. Although my mother said that had I named a “cat” Maryjane, my grandma would have turned over in her grave, because she had hated cats with a passion. Therefore, Maryjane is the name of my new little friend.

Little Maryjane has settled in very nicely. The veterinarian gave her a clean bill of health and stated that she was only about one year old. Her age surprised me, because she behaves like a much older dog. Although she will play occasionally, her sole purpose in life seems to be getting as much love as she can. She enjoys sitting in the sun while I am out in the garden, and she enjoys sitting on my lap for hours having her tummy rubbed. She enjoys car rides and knows to do her “business” outside. She has even bonded with my husband and enjoys cuddle time in bed with us each night, before he puts her in her own bed to sleep.

Although this topic does not have much to do with Parkinson’s Disease, PD-Plus, or dealing with the medical community, it does have much to do with well-being. Since Maryjane came into my life, she has played a large role in reducing stress and providing companionship. She has slipped so perfectly into our lives that I can only presume that she was the reason I felt lead to the animal shelter that Saturday afternoon. Her personality and behavior matches well with the limitations that this disease has placed on my life. Someone mentioned to me that she was the perfect dog for me. I may have rescued her from the shelter, but she has added benefits to my health that I never thought possible.

Our local animal shelter is a wonderful place. I found the workers to be helpful and friendly to deal with. Additionally, when a person adopts a pet, the adoption includes a bad of dog food, all of the first year’s required shots, and a certificate for a free veterinarian visit to insure that the animal is in good health. I believe that many of the animals at the shelters are not there because they are bad animals. I do believe that many are there because of circumstances caused by humans. I would now highly advocate that anyone seeking a four-legged companion to first check out the local animal shelters. There are so many unwanted, well-behaved animals who only need a good home in order to thrive.

To complete this little story, I am including pictures of both the real “Little Miss No Name” and Maryjane, who reminded me so much of this little doll when I first saw her.

Personal Medical Journal November & December 2007

2007-11-12T21:01:00.000-08:00

November 12, 2007

It has been a long time since I have posted anything new, due to a variety of reasons. I had meant to add a final entry for the month of October, but it just never happened. Therefore, I will give a quick update on everything that has been happening over the last few weeks.

The greatest challenge over the last few weeks was completing the process of replacing the Mirapex for the Azilect. Once I was a little more than half-way through the process, I felt as if I suddenly hit a brick wall. I had no energy, and I spent much of my time either reading or napping. It was the most bone weary fatigue that I have ever experienced. I am pleased to say that it has gotten better.

I have been completely off of the Mirapex for almost two weeks, and I have been taking the Azilect for a little over one month. Thankfully, the obsessive-compulsive side affect of the Mirapex has disappeared, which was the main reason for discontinuing the Mirapex. The Azilect has actually improved the motor fluctuations that I had been experiencing. It does appear that the medication switch was a positive decision.

Last week I had to have an epidural injection in my cervical spine, which was a procedure that had been planned for quite some time. So far, it appears that this injection was a success. I have less neck and arm pain from the herniated C5-6 disc. It took about six days for me to fully "recover" from the procedure. The sedation that I was given during the procedure stayed with me for a little over twenty-four hours, which I thought was strange. I slept after the procedure and for the majority of the day following the procedure. There was some significant pain for the first four to five days following the procedure, but all of that pain disappeared by the sixth day. I am very hopeful that this injection keeps the pain under control for a while.

I saw my MDS on Tuesday, and it was a very eventful visit. She agreed that the sleep study was "inconclusive", but she was able to glean enough information to make some additional medication changes. We are increasing the Azilect from .5 mg to 1.0 mg. each morning. Additionally, based on my husband's description of the REM Behavior Sleep Disorder types of symptoms he has observed, she had prescribed Klonopin to be taken right before bed. I have now taken it for four nights, and I do believe that it is helping with the quality of my sleep. I know that my husband is getting better sleep, because I have not kicked or hit him during my dreams. This particular mediation is supposed to help suppress the symptoms of REM Behavior Sleep Disorder. Although it has only been four days, it does seem that it is having beneficial effects.

All of these recent changes appear to have been beneficial. The only negative aspect is that I am still quite fatigued during the day. The positive results far outweigh the one negative aspect. The fatigue could be a bi-product of the medications or just the disease itself.

I am going to end here for now. I am working on another post, and I do hope to have it complete by this week. I will continue to add information updates on my medical process on this post for the months of November and December. God Bless to all.

December 12, 2007

On December the 5th I saw my Movement Disorder Specialist. She was very pleased with the benefits that adding the Azilect has had on my symptoms. Additionally, I informed her that the Klonopin was helping me get better sleep at night. I am still experiencing extreme daytime fatigue. I often nap daily, but she said that is perfectly okay to do. I do still have breakthroughs of symptoms, but not as extreme as prior to starting the Azilect.

Before we ended the visit I asked her if she had a clearer picture or thought as to which form of Parkinsonism I have. She believes that I do have idiopathic Parkinson's Disease. Rather than the tremor dominant form, she feels that I have the more akinetic-rigid form. I was so happy to hear that she no longer thought that PD-Plus was a possibility. I almost began crying right there in her office.

Since it appears that the new medication regimen is working well, I am to start seeing her every three months again, rather than monthly. I still have bad days, which is to be expected with this disease. I am better able emotionally to deal with those bad days, now that I know exactly what I am dealing with. It is a blessing to finally have the answers I have been searching for.

December 21, 2007

As much as I enjoy the Christmas season, I can really feel the effects of the PD with the additional hustle and bustle of the season. There are so many things that I need to get done, but many times my body just will not allow me to keep up. This is difficult for me to accept at times, because I have always been such a go-go person.

It is so remarkable how the things I used to take for granted have changed. If I spend an hour or two shopping, I find myself done physically for the rest of the day. Naps are now an almost everyday event.

I spent yesterday baking, and by evening I was a wreck. My lower back hurt worse than prior to the fusion, and somehow the effects of my medications wore off worse than they have since making all of the adjustments. The bradykinesia left me hardly able to walk or speak just prior to bed. The pain from my back was so bad, that it brought me to tears. Yesterday was a good lesson for me in the sense that I must come to grips with the fact that I just no longer have the abilities to physically do what I once was able to.

Aside from the extreme fatigue, there are still some minor symptom breakthroughs. Again, these are most often brought on by trying to do more than I should. My goal for 2008 is to really start listening to my body, in order to prevent some of the effects that occur when I try to keep "pushing myself". I have been given the opportunity to have the time to take care of myself, since I am no longer able to work. Therefore, my new focus is to use this time to try new things in order to keep the PD under the best control as possible.

Filing For SSDI / SSI Benefits

2007-10-28T18:03:00.000-07:00

Because many patients with a chronic illness may have to file for permanent disability at some point, I thought it was important to add a post about the role the medical community plays in this process. Aside from that role, there are multiple ways that a patient can become prepared should the need arise to file for permanent Social Security benefits due to disability. In fact, many of the suggestions that I have previously posted can become key elements during the Social Security application and approval process.

When it was determined that it was time for me to file for permanent disability, I was not looking forward to dealing with Social Security. Most people have heard the numerous horror stories about denied claims, the appeals process, and the length of time it takes for approval, etc. Many of us even know someone who has been through the process and had trouble with getting their claims approved. These horror stories were the nexus of my fears about dealing with Social Security.

When I was ready to begin the process, I went to the Social Security Administration’s website, in order to find out what the process was for filing my claim. I was pleasantly surprised to find that a person can file the initial application for benefits right through the website. What I found out during the online application process is that the application is very long and detailed. Depending on the amount of information a person has, the application process is probably a two to four hour process. In my case, I have difficulties with sitting for extended lengths of time, so it took me two days to complete the application. Their process allows a person to save and return to the application as many times as needed, which was a redeeming feature.

Based on my experience, the following information needs to on hand, prior to starting the application process for Social Security benefits:

1. List of all physicians, including mailing addresses, telephone numbers, and associated dates of contact. (Approximate dates are appropriate. Example: from 01/01/01 thru 12/01/02) This list should also include physical therapists, mental health professionals, physician’s assistants, and any other medical professional / practitioner that the patient has had contact with.

2. Dates that chronic illness began, including various symptoms associated with illness onset

3. List of diagnostic tests, including dates and results

4. List of past and current treatments including physical therapy, prescription medications, surgeries, over the counter medications, etc.

5. List of specific limitations and symptoms that prevent a person from being able to work. Specifics are required and looked at very closely. (Example: how long can a person sit before having to get up and move around, distance a person can walk before taking a break, amount of time a person can stand, etc.)

6. Copies of as many medical records that a person can find.

The application for Social Security itself is the greatest indicator of the amount of detail that Social Security looks at when making a determination for benefits. The more details that supplied during the initial application process, the better the chances are that a claim may be approved. If Social Security determines that there is not enough information to confirm that a person is permanently disabled, the claim most often will be denied.

Although there are many more aspects involved with the Social Security process, I primarily want to point out how some of the suggestions I have previously written about can assist in the process. Let us look at the following:

1. Finding and establishing a good doctor / patient relationship with physicians – This is essential for a person with a suspected or diagnosed chronic illness, but it can also be the most important aspect when filing for disability benefits. Social Security makes contact with a person’s physician(s) both in writing and by telephone, in order to verify a person’s disability status. If a patient does not see a physician often or does not have a good relationship with the physician, the physician’s response to Social Security may not help with the claim, simply because the physician may not be fully aware that any limitations exist. My Primary Care Physician and I had discussed my health issues prior to me filing my application, and he was well aware that his input to Social Security was essential. Because I have a good relationship with my Primary Care Physician and see him on a regular basis, he had enough information about my conditions, symptoms, and limitations to confirm my disability status and back up his opinions.

2. Personal Medical Records File – The person who has copies of his / her own medical records already has a large portion of the information that the Social Security application asks for. This includes diagnostic tests, treatments, information on physicians, etc. Keeping a personal medical file is not only an asset when dealing with the medical community, but it insures that a person does not have to spend hours searching for critical information that essential when filing for Social Security benefits. Additionally, I was able to provide the records I had to Social Security immediately, which allowed them to begin their process of determining my disability status. I believe that being able to provide them with an almost complete set of my medical records, expedited the process, because they were not dependent on sending out requests to the many physicians I have seen or waiting for those records to be sent by my physicians. They would have only had to wait for any additional information that they may have thought necessary to make a determination. Of course, this is only my opinion based on my personal experience.

3. Personal Medical Journal - Keeping a personal medical journal is not only an asset during and after the diagnosis process, but it is a great resource for the person who is applying for Social Security Benefits. Although medical records are important, they may not reflect or detail all of a patient’s symptoms, daily struggles, or the effects that the chronic condition has on the patient’s life each day. Additionally, a personal medical journal is a first hand account about symptoms, dates when symptoms emerged, responses to treatments, and other aspects that may not make it into a physician’s medical records. My journal became my main source for detailing my conditions, symptoms, and especially the progression of those conditions. Although I did not submit my journal to Social Security, I did use the information to insure that the information I was submitting was accurate. If Social Security had denied my claim, I would have then provided my journal during the appeals process.

4. Copies of my written correspondence to my physicians – Written documentation became essential during the diagnosis process, but also assisted me during the Social Security Application process. As with my personal medical journal, I referred to my copies of written correspondence to assist with detailing my symptoms, significant dates, and for general accuracy purposes. Again, I did not submit these copies to Social Security, but would have included them during an appeals process.

The most important thing that I discovered is that no information can be withheld when filing a claim with Social Security. Too much information is better than not enough information when going through this process. For example, I remember how angry I was with some of the specialists’ opinions about my conditions in the early years, along with their written reports that they submitted to my Primary Care Physician. However, during this process their content became less important. The reports actually helped to establish that physical symptoms of chronic conditions existed, as well as a timeline of when I first began seeking treatment and a diagnosis for these conditions. Therefore, during the Social Security process, some records that I once felt were detrimental, became evidence that the onsets of my conditions occurred several years prior to any diagnosis. This information, along with more recent records that indicated the severity of symptoms progression, helped to establish the likelihood that my conditions were both chronic and progressive.

I was pleasantly surprised again when I went to deliver my medical records to my local Social Security office, the day after I submitted my application via the internet. The man I met with was polite and informative. He assisted with helping to fix a problem with the records of my past earnings in order to insure that my award amount was correct in the event that my claim was approved. Additionally, he made sure that I had his contact information in the event that I had any further questions while waiting for a determination on my claim. Almost four months later, this same man called me on a Saturday to let me know that Social Security approved my claim, and advised me of additional documentation that I needed to bring into the local office as a result. Again, I was very amazed.

In my opinion, my experience with Social Security was remarkable considering all of the horror stories out there. I believe that the following factors may have played key roles during the claim process:

1. I have two diagnosed conditions that are considered as qualifying conditions for permanent disability by the Social Security Administration.

2. I have at least seven years of consistent visits to my Primary Care Physician and multiple specialists for diagnostic and treatment purposes.

3. I took extra time to provide as much detailed information as possible while filling out the online application, including information on other minor health conditions not directly related to the two chronic conditions.

4. I had 100% support from my Primary Care Physician who had full knowledge of my past medical history as well as my current conditions, and how these conditions affect my daily life.

5. I made certain that Social Security had access to as many medical records as possible.

6. I made sure that the person, outside of the medical community, who knew the most about my conditions and the associated disabilities, was the person who could best support my claim of permanent disability if contacted by Social Security.

Prior to applying for benefits, I came across an internet site that clearly outlines the Social Security claims process. This site gives complete information on the entire process including application, denials, appeals, hearings, etc. It offers information about legal resources, how Social Security determines if a person is disabled, and answers many common questions that come up during the process. It is one of the best resources out there for anyone who may need to apply for SSDI or SSI benefits. I will include a link to this site under the “Resources for PD, PD-Plus, and Other Movement Disorders” section.

It was a blessing that my experience with Social Security went as smooth as it did. It alleviated the potential for additional stress in my life, which has a tendency to affect my condition in a negative manner. I hope that by sharing my experience and the information that I found valuable that someone else might also have a good experience when dealing with Social Security. My positive experience may have been the result of the depth of information supplied to Social Security, a little help from the Lord, or a combination of both. Regardless, attention to every detail and a little prayer, cannot hurt when dealing with the Social Security Administration.

The Sleep Study

2007-10-18T21:44:00.000-07:00

Although I originally added this information on the “My Personal Medical Journal September & October 2007” post, I decided that it was significant enough to expand on.

Several years ago and prior to any symptoms of Parkinsonism, I began having various symptoms related to sleep disorders. In my late teens I began having sleep paralysis, which is described as paralysis upon sleep initiation or awakening which can include visual hallucinations. Additionally, I began to have sudden onset sleep attacks, excessive daytime sleepiness, and minor cataplexy-like episodes about five years ago. These are all listed as symptoms of Narcolepsy. Also, in my late teens I began having episodes where I would act out my dreams by talking, screaming, kicking, hitting, running motions, etc. This is characteristic of REM Behavior Sleep Disorder. These problems still exist.

Since the onset of my motor symptoms, I now experience intermittent insomnia. Additionally, I also have multiple nocturnal awakenings that occur on a nightly basis.

The reason I decided to give this topic its own post, is because sleep related disorders are very common in both Parkinson’s Disease and Parkinson-Plus Disorders. Although I am not a foremost expert on this, I will offer the information that I now know, based on my internet research. The Parkinson-Plus Disorders that I do not mention, are those which I have not done adequate research on.

1. Narcolepsy has been specifically linked to Parkinson’s Disease. Narcolepsy can pre-date the onset of Parkinson’s Disease symptoms by several years.

2. REM Behavior Sleep Disorder is common in Parkinson’s Disease, Progressive Supranuclear Palsy, and Multiple System Atrophy. Some literature states that up to 80% of patients who have Multiple System Atrophy, also have REM Behavior Sleep Disorder. REM Behavior Sleep Disorder can pre-date any form of Parkinsonism onset by several years.

3. Insomnia is common in Parkinson’s Disease, Multiple System Atrophy, and Progressive Supranuclear Palsy.

4. Sleep Fragmentation, which is defined as multiple nocturnal awakenings, are common in Parkinson’s Disease, Multiple System Atrophy, and Progressive Supranuclear Palsy.

5. Sleep Apnea / Hypopnea is more common in Multiple System Atrophy and Progressive Supranuclear Palsy, than in Parkinson’s Disease.

Although there are numerous additional manifestations of sleep disorders in Parkinsonism related conditions, these exemplify the more common ones. Based on the information I have found, I can fully understand why my Movement Disorder Specialist wanted to confirm or rule out REM Behavior Sleep Disorder and Narcolepsy. The following is my recent experience with a sleep study that was done, which was supposed to determine whether or not I have these conditions. It is a duplication of the original post.

I went for a sleep study on the 9th, which was intended to confirm or rule out REM Behavior Sleep Disorder and Narcolepsy. Sleep disorders are common in Parkinson's Disease and Parkinson-Plus Disorders. Unfortunately, it is my opinion that the wrong type of study was done. I am not a doctor, so I plan to confirm this with my MDS in two weeks.

There are two main types of Polysomnograms that can be done, according to the information I found on the internet. One is specifically used to determine if sleep apnea is present. Basically, a patient is wired up with sensors and goes to sleep. After about 90 minutes, the patients is told to change sleeping positions. (Example: switch from sleeping on the back to sleeping on the side) After an additional 90 minutes the patient is awakened and fitted with a mask that is connected to a C-Pap machine. The patient goes back to sleep and is monitored while using the C-Pap machine. The second test is geared more toward ruling out REM Behavior Sleep Disorder and as part of the testing for Narcolepsy. The patient is still wired to various sensors, but is never awakened throughout the night or hooked up to a C-Pap machine.

I was given the first test. The problem with this is that I never entered into REM sleep during the test, due to frequent nocturnal arousals, as well as being wakened every 90 minutes. Therefore, having never entered into REM Sleep, it is my understanding, that it is impossible to determine if I do have REM Behavior Sleep Disorder. Additionally, because the second test that is used in conjunction with a Polysomnogram for ruling out Narcolepsy was never done, it is impossible to determine whether or not I have Narcolepsy.

The only information that was gained by the test that was performed, is that I have multiple episodes of "hypopnea" while I sleep. In general terms this means that I have episodes of shallow breathing of less than 50% of normal, that cause arousals during sleep. Unlike true apnea, I do not stop breathing altogether. It also confirmed that I have multiple nocturnal arousals of unspecified origin that occur. These unspecified arousals continued even while attached to the C-Pap machine. Additionally, my sleep onset latency time indicated excessive sleepiness, and I only achieve 61% sleep efficiency. Normal sleep efficiency is 85%.

Again, I am not a doctor, but after researching my results on the internet, they raised more questions than there were prior to the sleep study. For example, apnea-hypopnea episodes are common in Multiple System Atrophy. These episodes can be decreased with anti-Parkinson medications, which I do take at night. This raises the question of whether or not the episodes would have been more numerous or severe had I not taken my medications the night of the sleep study. Frequent nocturnal arousals are common in both Parkinson's Disease and Parkinson-Plus Disorders. One of my original complaints was excessive daytime sleepiness, which the sleep onset latency time and the sleep efficiency percentage both support. Unfortunately, there is now no determination on the REM Behavior Sleep Disorder or Narcolepsy, but also no real explanation on what these results mean in terms of my condition.

I fully intend to bring these issues up with my MDS for her interpretation. If I am correct in the opinion I have made based on my research, a second sleep study will need to be done. It angered me quite a bit, because I had raised the question about the type of study being done, a week prior to the appointment. I was told that this is the standard test. I now believe that I was misinformed.

As I have stated previously, I am not a doctor. I reached my opinions after doing research on the internet. I will depend on my Movement Disorder Specialist to determine if my opinions are correct. Once I am able to speak to her, I will update this post with that information. Even if the two main issues were not resolved with this sleep study, I am hopeful that the information that was gathered may help her better determine which form of Parkinsonism I have. I will know more about all of these issues in two weeks.

Organizing Your Personal Medical Files

2007-10-18T20:55:00.000-07:00

Although this topic does not really affect directly how a patient deals with the medical community, I thought that it might be of benefit to share how I maintain my personal medical files.

I have two main conditions that affect my daily abilities. For better understanding, these conditions are severe enough that each are considered a disabling condition. Additionally, I have a few minor conditions that while not disabling, are surely affected by the two major conditions. For example:

Parkinsonism – major condition causing disability
Degenerative Joint Disease of the Spine – major condition causing disability
Osteoarthritis (knees) – minor condition not causing disability
Bursitis (hip) – minor condition not causing disability
Restless Leg Syndrome – minor condition not causing disability

Each patient’s medical condition(s) is / are unique to him / her. One patient may be dealing with one major chronic condition only, while another patient may have more than one major chronic condition. If a patient has additional minor conditions thrown into the mix, the variables are endless.

Based on my conditions above, I created a filing system for the sole purpose of quick and easy accessibility. Because I am dealing with more than one condition, I have a large quantity of records. While all of these records are important, not all of these records need to be provided to each physician. Therefore, due to the number of conditions I have been diagnosed with, plus the large volume of records associated with these conditions, I came up with the following file system:

File #1 – Complete set of all medical records in my possession

File #2 – Complete set of all medical records relative to Parkinsonism; includes any reports from specialist during the diagnosis process, diagnostic tests done to rule out other disorders, a copy of any related written documentation, and copy of personal medical journal entries that relate to Parkinsonism.

File #3 – Complete set of all medical records relative to Degenerative Joint Disease of the Spine; includes any reports from specialist during the diagnosis process, surgical reports, diagnostic tests, a copy of any related written documentation, and copy of personal medical journal entries that relate to the spine.

File #4 – Complete set of all diagnostic tests, regardless of type or conditions associated with these tests

File #5 – Complete set of all types of written documentation; includes written correspondence and personal medical journal.

Here is how this filing system assists me with quick and easy access to specific records. I will refer to the file number followed by a brief explanation for the purpose of that file.

File #1 – If I were to find myself in the position of having to see a new Primary Care Physician, that physician will need to have a complete set of my records. Although the physician’s office personnel would likely send out for copies of my records, the ability to offer the majority of my records during an initial appointment could give the physician a jumpstart on becoming familiar with my health related issues. Additionally, during an initial diagnosis process for an unidentified condition, a specialist should be provided a complete set of records, especially any results from diagnostic tests. This complete history, in addition to the exam, will assist the specialist who is attempting to determine a potential diagnosis and the course of action necessary to reach a diagnosis.

File #2 – Once a confirmed diagnosis of Parkinsonism was given, any specialist who I see now or will see in the future, only needs those records that are specific for Parkinsonism, unless otherwise requested. I have found that verbal information given to a specialist about other unrelated conditions is usually sufficient.

File #3 – Once a confirmed diagnosis of Degenerative Disc Disease of the Spine was given, any specialist I see in the future will only need those records that are specific to my history with this condition. This includes all documents related to diagnostic testing, and in my case, two surgeries. Again, I have found that verbally communicating the other unrelated conditions to a specialist is usually sufficient.

File #4 – Although this file comes in handy primarily when dealing with a new “unknown” potential chronic condition, I continue to keep this file for my own easy reference. For example, I will occasionally think about something I want to research about my conditions, and many times will pull my diagnostic test results for the correct medical terminologies or because it pertains specifically to the actual information on a specific diagnostic report that I want to research.

File #5 – This file gives a running history in writing and from my perspective, about every aspect of my health. It includes chronological information that can be used to gauge progression as well as the length of time that each condition has existed in my life. This information is invaluable not only when dealing with the medical community, but also when dealing with Social Security.

Essentially, I created my files based on my own experiences, which included the many specialists I have seen and what type of information each specialist required. Additionally, the documents in each file are arranged in chronological order by date, with the most recently dated document in front. I found that this not only assists me, but also assists a specialist who can look at my medical records from the beginning to the present, in chronological order. Again, each patient’s medical history is different. In my case, my system helps me spend less time figuring out what to give to a particular specialist, since I have created condition specific files. I only need to grab the file, make a copy, and proceed to the appointment. I do not have to spend hours digging through all of my records trying to determine which ones to provide to a specialist. Finally, I do not end up providing information overload to a specialist; by including information that is not relevent to the condition that specialist treats.

I have found that organization has become a key benefit for me, and it is just another aspect of dealing with my chronic conditions. It saves me time, which allows me to focus on the more important things in life.

The Importance of Keeping a Personal File of Your Medical Records

2007-10-12T21:04:00.000-07:00

Up until five years ago, I never gave my medical records any thought. I presumed that those records were important references for my Primary Care Physicians, and that they held no benefit for me. This perception was not only naïve, but very incorrect. In time, I would discover that having copies of my own medical records enabled me to maneuver more quickly and efficiently within the medical community.

My education on the importance of my medical records was a slow and painful one. Early on I recall having initial visits with specialists as being non-productive, because the specialists required information contained in my medical records, which had either not been provided or were not given to me to take with me to the appointments. This resulted in wasted time, not only for me but also for the specialists. Other than a routine exam and requesting basic diagnostic blood work, often no further evaluation was done until the specialists had my records. Additionally, if the specialist’s office requested my records, additional time was added between the initial appointment and a second appointment.

This scenario served as my first lesson in my education. It only took a few of these initial appointments before I decided I was not going to allow this scenario to occur again.

I began preparing for an initial visit with a specialist on the same day it was determined that I would be referred to one. If my Primary Care Physician referred me to a specialist, before leaving his office I would talk to one of his office staff about getting copies of my medical records for the visit. Often the staff person would tell me that they would send the records to the specialist prior to my appointment. I would then tell the staff person that I preferred to hand carry my records with me to the appointment. Taking my own medical records with me to an appointment with a specialist provided a guarantee that the specialist would receive them.

Taking my medical records with me worked like a charm. As time moved forward, another scenario began to emerge. As I was going through the referral process from specialist to specialist, I was not getting any closer to finding any answers to my medical issues. This applied to both my spinal problems as well as the Parkinsonism. Additionally, each time I was referred to a new specialist, my Primary Care Physician’s office staff had to make the same copies of my medical records for every new specialist. Therefore, I decided that whenever I received copies of my medical records to give to a specialist, I would make a copy for my own personal records, prior to handing then over to the specialist. Additionally, anytime my Primary Care Physician sent me out for new diagnostic testing, I always requested a copy of the results for my personal records. Some of the benefits of doing this are as follows:

1. Eliminated the need for my Primary Care Physician’s staff from having to make copies of the same information each time I saw a new specialist; they only had to provide me with any records that were in addition to the ones I already had in my possession.

2. Allowed me flexibility when I found it necessary to see a specialist outside of my insurance without having to inform my Primary Care Physician prior to doing so.

3. Allowed me direct access to the medical terminologies that were being used in reference to my health, which allowed me to research my own health on the internet; this contributed to a better understanding of potential conditions and assisted with my ability to communicate with the specialists in an educated manner.

4. Allowed me to research various topics, conditions, etc., based on the information in my medical records, that were possibly associated with my symptoms; this provided enough education to have the ability to recognize when a physician made statement that were contrary to known facts.

5. Allowed me to compare what was in writing versus what may have been communicated verbally during an appointment.

This method worked for quite some time until I was faced with the inability to continue in the workforce. My initial intent was to discontinue working, only temporarily, while I went off my medications in order to obtain a diagnosis. So, initially I filed for short-term disability through the state. This process did not require me to provide medical records. It was only necessary to fill out a form and have my Primary Care Physician fill out a form as well. I received approval for my claim, and I was relieved to be able to concentrate on my health, without having to worry about a loss of income.

Approximately two months later, the state sent me a letter stating that a neurologist of their choosing must evaluate me. I will not go into any detail about my experience with that visit, except to say that it was a waste of taxpayers’ money. What I will elaborate on is the fact that I now had to obtain all of my medical records that pertained to my medical conditions, without exception. Up to this point, the only medial records that I was keeping for my personal files were the records I had received from my Primary Care Physician, which did not include any reports from past visits with specialists. Again, until faced with this new scenario, it never occurred to me that I should probably have copies of my medical records from every specialist who had evaluated me. I now had to contact each specialist’s office, request the records, and pay for the records. Since I had to provide these records to the state appointed neurologist, I made sure that before I provided her the copies, I made copies for my own personal files.

The situations that I encountered throughout the last five to ten years provided the lessons I needed to learn about the importance of having copies of all my medical records for my personal files. Of course, there are some missing pieces in my personal files, because it was difficult to recall every doctor I had met over the last ten years. Therefore, I have a set of medical records, that are as complete as possible, and I continue to add to them as necessary. Building my personal medical files became my greatest asset when I came to the realization that I was no longer able to be in the work force permanently. With this realization, I was fully aware that it meant that I would now have to deal with Social Security. Like many others who find it necessary to file for permanent disability through Social Security, I did not look forward to the task.

I began the process of filing my application for Social Security. I was very pleased to discover that I could complete the initial application online. Although I will detail the Social Security process on a future post, I would like to address the important part that my personal files of my medical records played in the process. Because I now have the majority of my medical records in my possession, I was able to provide Social Security the entire portfolio of my medical history. I believe that providing my medical records when I filed the initial application decreased the length of time I had to wait before I received a determination from Social Security.

Every patient has a right to request copies of their medical records. When a patient makes a request for their records, he / she will normally be required to fill out a request form. Additionally, I did find that most physicians charge a fee to the patient for providing the patient with copies of their records. The fees vary, but I found that many charged a fee per page. (Example: 25 cents per page) Some physician’s offices will make the copies while the patient waits, while others will provide the patient a future date to return to pick up the requested copies. Each physician’s office has its own policies.

In a future posting, I will address how I have set up my personal medical files. Although each patient’s situation is different, the patient with a chronic condition will more than likely have a large medical records file. Additionally, patients with multiple conditions will have an even larger medical records file. Therefore, I fine tuned how I have my medical records organized, based on my two main chronic conditions. Keeping my records in an organized filing system has proven to save time and has added convenience when I must access my files.
The point I want to make in closing is this: If you are a patient, who is in the diagnosis process or already has a diagnosis, make time to create your own personal medical files. There is a high probability that a chronically ill patient will need to provide medical records to various entities. The patient should take a proactive approach, and have those medical records in hand, so that he / she is not dependent on people in the medical community to provide those records in a timely manner. This is just another way in which a patient can take charge and become his / her own advocate, with respect to insuring that his / her medical needs are met in a timely and efficient manner.

The Importance of Keeping a Health Journal

2007-10-02T23:50:00.000-07:00

Over the years, I have had multiple symptoms for various conditions, and I have been evaluated by a variety of physicians for these symptoms and conditions. With this in mind, it is impossible for me to remember each symptom and its date of onset. Additionally, it is also impossible to remember all of the details surrounding the various conditions I am either diagnosed with, or the individual diagnostic tests and dates for numerous probable conditions that have been ruled out along the way. With respect to both symptoms and conditions, although I may remember the names of physicians who have evaluated me, I cannot rely on my memory for the dates of these visits or the outcomes. Therefore, although I have always prided myself on the ability to rely on my memory, I did discover that even the best memory is incapable of keeping track of all these issues. This is certainly true for someone who has been experiencing symptoms and searching for a diagnosis for any significant length of time.

Whether a patient has been diagnosed with a chronic condition or is still in the diagnosis process, keeping a health journal is a great way to document the patient’s health history. There are several benefits to keeping a health journal, which include the following:

1. Establishes a timeline for the initial onset of symptoms, which can be critical when seeking a diagnosis for certain conditions

2. Establishes a timeline for progression of symptoms as each new symptom is documented, or established symptoms worsen

3. Can be used as a tool for the patient to recall specific events that need to be discussed with a physician during an appointment

4. Can be used as a tool for physicians, if the patient has provided him / her a copy

5. Establishes a running history of diagnostic tests for conditions that have been ruled out or confirmed.

6. Establishes a running history of treatments for known conditions, as well as treatments for symptom alleviation where a cause has not yet been determined

7. Can be a great asset for the patient who is filing for disability benefits, again because it establishes a timeline and documents progression of the chronic condition

There are several methods that a patient can use when keeping a health journal. Some methods are better than others are, and I have tried quite a few. I now use a combination of two methods with respect to my journals, so I will share those methods. Essentially, there is not a right or wrong way to keep a journal as long as essential information is included. Some examples of essential information are:

1. Date of journal entry

2. Description of topic – new symptom, changes in established symptom, reaction to medication, outcome of a visit with a physician, etc.

3. Complete explanation about the topic which answers the basic questions of what, where, when, how, and why, although not all of these are applicable to every topic. (Example: Where was the patient when the new symptom emerged? How long did the new symptom last, or is it ongoing?)

4. Notations on telephone conversations with physicians or office personnel in the physician’s office – include date, time, topic, and follow-up information

The first type of health journal that I keep is a journal that I write in only as new issues come up. Although my symptoms change from day to day, I do not write in the journal daily, because the day-to-day changes in symptoms are typical of my condition. Actually, the symptoms can change from minute to minute, but again, this is typical for my condition. I use my journal to document new symptoms, changes in how my medications affect my symptoms, appointments with physicians, and any significant change in condition that may be of importance.

In the beginning, I began writing in the journal daily, but I found that this only added additional material for reading without offering additional benefit or information. Because I often will provide my Primary Care Physician with a copy of sections I think he needs to see, I wanted to insure that the amount written was not overwhelming. Therefore, by only writing about significant changes / events, I believe I increased the likelihood that my physician will take the time to read what I have provided to him. Besides, I am one of those people who just cannot stick to writing in a daily journal, regardless of the topic.

The second type of health journal is probably better referred to as a complete “list” of all health related issues. This “list” begins with my first surgery when I was seven years old, and it continues through today. Included on this list are major illnesses, symptoms, surgeries, medications (past and present), etc. I created this list in 2001; therefore, any information prior to 2001 came from memory recall. Although I am certain that there have been some omissions due to faulty memory, this list contains approximately 95% of all issues pertaining to my health. The following is a sample of how my health related issues are noted in this journal:

1976 – Tonsillectomy and Adenoid removal at 7 years old

1984 – Walking Pneumonia at 15 years old

1988 thru 1989 – First pregnancy w/ multiple complications including pre-term labor and premature delivery at 33 weeks gestation. 19-20 years old (Terbutaline prescribed throughout pregnancy for pre-term labor and Magnesium Sulfate administered in hospital to stop active labor at 26 weeks gestation.)

October 14, 2003 – While walking for exercise, I noticed that my right arm no longer swings while I walk.

Most of my health related entries are one-lined notations, with the exception of major surgeries or illnesses. My entire health history is now summarized in date order, on four pieces of paper. If more in depth information is required, my alternate journal can provide the additional details.

The benefit from this type of health journal or “list” is it enables me to hand my physician(s) a few sheets of paper that gives an almost complete history of my health. It provides the dates (approximate dates prior to 2001), the medical events, and the results if any. Not only does my journal (list) include my symptoms pertaining to my current diagnosis of Parkinsonism by date of onset, but it also includes unrelated symptoms and information, that may be of importance for a physician who is looking at the entire picture, when trying to make a more precise diagnosis. The physician may see an event on my list that occurred ten years ago, prior to the onset of my symptoms of Parkinsonism, which may actually have been an early potential indicator for one of the various forms of Parkinsonism. This entire picture may help my physician during the process of trying to determine which form of Parkinsonism I have.

I maintain my journals on my computer and keep a printed copy in my own personal medical file. I have found that by using the computer, I can print out specific entries easily, to forward to my physician(s) as needed. If I am ever unsure of an event related to my health, I have easy access to my history. Additionally, based on the methods I use, it takes very little time to add new information to the journals. The little extra effort to track my medical health accurately through my two journals became a great asset during my diagnosis process. I have the security of knowing that I have the ability to provide a complete medical history to my current or future physician(s), without the potential to leave out essential information.

As I have stated in previous posts, written documentation is a key factor when dealing with the medical community. My journals make up a large portion of my written documentation. My journals are just as important as my written communications with my physicians. The same theory holds true for both. Verbal information can be challenged, but written information through appropriate documentation / communication is unlikely to be questioned. Keeping a health journal adds yet another level of security and helps increase the odds, for the patient who is searching for a diagnosis.

The Emotional Side of a Chronic Illness – Part 2

2007-09-28T12:26:00.000-07:00

After Diagnosis

I have already outlined many of the emotions that I experienced during the initial diagnosis process. Emotions such as anger, disappointment, frustration, depression, loss, mourning, and guilt, were emotions that came and went, often triggered by an unexpected event or change in my condition. Anger, disappointment, loss, and mourning are emotions that I have been able to overcome. They did not follow me into my post-diagnosis life. Unfortunately, frustration, depression, and guilt decided to follow me into the world of Parkinsonism. Additionally, feelings of being alone and fear had joined the party.

Although frustration, depression and guilt are still with me, they do not intrude in my life as often. Depression is directly tied in with medication and low dopamine levels. Frustration tends to appear more often than guilt. It is my opinion that I will continue to experience frustration primarily due to the continuous changes typical of my condition, which can happen at any time during the day without warning. Of the three emotions and associated feelings, I believe that guilt will soon be a part of the past.

When I first heard Parkinsonism was my diagnosis with the probability that I may have one of the PD-Plus conditions, fear and the feeling that I was alone with my condition, entered into my life.

I immediately set out doing research on all of the PD-Plus conditions, and I was not pleased with the information I was able to find. Parkinson’s Disease can be a devastating condition in its own right, but the PD-Plus conditions were far worse with respect to prognosis. This information was all it took to kick-start the fear, which took off running.

There were several aspects of fear that dominated my thoughts. If I am dealing with a PD-Plus condition, it may only be a matter of time that the Sinemet will no longer offer any benefit for my symptoms. This scenario means that I would always walk slowly with significant difficulty, and my speech would be so affected that verbal communication would always take significant effort. My major symptoms would never be improved, and I would have them with me every minute of the day. Honestly, my fear is whether I have the strength within me to deal with this possibility. I also know that PD-Plus conditions progress more rapidly and reduce life expectancy, and I am definitely not ready emotionally for either. Do not misunderstand, I do not fear death. However, I have so much more I want to accomplish before I am ready to leave this earth. Unfortunately, these fears cannot be put to rest for a while, because I am now in a waiting game to see how quickly my symptoms progress or if the medications decline in benefit.

I now understand how a person can feel alone, even if surrounded by a dozen people who love him / her. My husband understands this condition and how it affects my life better than anyone else does. Yet, his understanding is limited, because he does not have this condition. Without having the condition, he can only observe and imagine what it feels like to constantly fight your body, depend on medication to move and speak, and to experience all of the emotional aspects involved. Therefore, although my husband understands more than anyone else who is unaffected by Parkinsonism, I began to feel very alone with my condition. I had no one to talk to about the various struggles, feelings, symptoms, etc., who could understand completely what I face with this condition. Initially, I never thought that there might be someone else out there who was facing a potential PD-Plus diagnosis.

On July 20, 2007, I was again searching the internet for information regarding PD-Plus conditions. On this day, I came across a blog called PD Plus Me. The author of this blog was writing about his experiences with a medical condition that may in fact be one of the PD-Plus conditions. As I read the blog, I was completely overwhelmed, not only with the author’s complete detailed account of his experiences and struggles with his condition, but also the knowledge that I was not the only one.

As soon as I finished reading the author’s story, I sent him an email. I let him know that I had a recent diagnosis of Parkinsonism that could potentially be a Parkinson-Plus condition. I included a little history about my symptoms, and the reasons why they might be associated with a PD-Plus condition rather than regular Parkinson’s Disease. Additionally, I let him know that his blog was one of the most informative and in depth sites I had come across, with respect to Parkinson’s Disease, as well as the PD-Plus conditions.

Within a short time, the author, Dan Brooks, responded to the email I had sent. From that point on we began exchanging information on our conditions. With each email I sent regarding my experiences with my condition, I looked forward to receiving a response in order to compare symptoms. Although there were some differences, there were also so many similarities, and I was so thankful for the opportunity to communicate with another person who understood completely the struggles and emotions involved when dealing with a potential PD-Plus diagnosis.

Dan’s blog, which is such an open and honest account of his journey through the PD-Plus world, was the final inspiration I needed to begin this blog, which had been something I had wanted to do for a while. His blog not only details his own personal story, but also offers insight into how his faith in God has influenced how he deals with his condition. It is very impressive how his blog has evolved into a great source of information for Parkinson’s Disease and PD-Plus Conditions, and that all of this information is available in one place. Additionally, the words he writes are not only educational, but also inspirational and uplifting.

I now consider Dan a friend, as well as a fellow writer with a longing to help others who are dealing with the physical and emotional aspects of these life-changing conditions. Dan’s focus is on providing in depth information on Parkinson’s Disease and the various PD-Plus conditions, while my focus is on providing assistance for those who are experiencing problems with the medical community while searching for that elusive diagnosis. Both of our blog sites share PD-Plus as a primary focus. Therefore, he has added a link to my site on his blog, and I have added a link to his site on my blog. We agree that by doing this, we may have an opportunity to reach more people who are searching for answers and feel alone with their illness. You will find the link to Dan’s Blog under “Resources for PD, PD-Plus & Other Movement Disorders.” The link is titled, “PD Plus Me, Patient’s Personal Story.”

In the short period since PD-Plus entered my life, a new set of emotions and feelings have emerged, and have become powerful forces in fighting the negative emotions. Contentment, enthusiasm, hope, and peace are working hard to replace the negative emotions that this illness promotes. I am now content with my new life as it is today and no longer mourn the life I once had. This blog has created a renewed excitement and enthusiasm that what I share may help someone else who feels alone in their struggles. Hope has been renewed in me through the love and support of my husband and the unending encouragement he gives to me daily. Peace has been provided by my faith in the Lord and the several people who He has recently put in my path who are uplifting as well as encouraging. When I look around me, I now can see how truly blessed I am, in spite of my illness.

The Emotional Side of a Chronic Illness – Part 1

2007-09-27T23:56:00.000-07:00

Pre-Diagnosis

I thought it was time to write about something on a more personal level. The majority of my prior posts have focused on issues patients face when dealing with the medical community and methods that can alleviate some of those issues. Although my previous posts represent my purpose for creating this blog, I think it is important to share the issues I have personally faced with respect to the Parkinsonism diagnosis. Therefore, I decided to begin by writing about how Parkinsonism affects me emotionally now, as well as how it affected me emotionally prior to the diagnosis.

My true diagnosis journey to Parkinsonism began in late 2003. It was at this time that I became fully aware that some of my symptoms were not related to the herniated cervical disc, which had been surgically addressed by a fusion in August of 2003. Because the fusion had corrected the symptoms that were related to the herniated disc, I was better able to recognize that the symptoms that remained were due to a separate cause. Therefore, in order to draw a line in the sand, I now state that my Parkinsonism related symptoms began in late 2003.

For the first couple of years, I did not actively search out a cause for the existing symptoms, nor the additional symptoms that began to emerge. Since many of the symptoms were not consistently present, I was fully aware that seeing a specialist would not produce any results. My previous Primary Care Physician and I made the decision to monitor the symptoms until they were progressed enough that a cause could be determined. I often provided written communication to my physician as symptoms changed or new symptoms emerged. Emotionally, this period caused frustration more than anything else did. I was frustrated because I wanted answers, yet I fully understood why I had to be patient.

The intense search for a diagnosis began in August of 2006. By this time, my symptoms had progressed to the point that without appropriate treatment, my ability to function in all aspects of daily life would have been non-existent. My symptoms were not only consistent and present, but they had progressed to a very severe level. For the first time since my symptoms began, I was frightened. It was at this point that I realized that I was not dealing with a minor disease. I knew that whatever it was, it had the power to rob me of my ability to walk, speak, or do any type of activity that required normal speed of movement. My biggest fear was that whatever I was dealing with might not have a treatment or cure.

I previously posted on how Parkinson’s Disease came into the picture that August day that I tried Sinemet. Between that day until June of 2007, three different Neurologists evaluated me. Two were Movement Disorder Specialists, and the other was a regular Neurologist. Without going through all the details again, I will only briefly describe the roller coaster of emotions during this time.

Anger was a huge emotion that I experienced. I was not angry at the prospect of having PD. I was angry about how I was being treated by the two Movement Disorder Specialists. One made statements contrary to known information about PD, focused on conditions that do not benefit from Sinemet use, and discounted or did not answer questions that my husband and I would bring up. The other specialist blew me off, because I had dared to question the methods of the first specialist. Angry does not even describe the depth of emotion that these experiences caused.

Disappointment was prevalent throughout this process. My third Neurologist was a wonderful, caring physician. Unfortunately, after 6 months, he felt that he did not have the necessary experience needed to diagnose the condition. This contributed partially to my disappointment. The majority of my disappointment stemmed from the knowledge that I was losing a wonderful physician who I knew I was able to work with. Additionally, this event meant that I had to start over again with yet another specialist.

Frustration was a daily emotion, which had multiple contributing factors. During "wearing off" times or when I went off medication for medical evaluations, the return of motor symptoms was very frustrating. The inability to speak normally or to walk with a normal rate of speed and fluency was not only exhausting but also frustrating to the point that I often spent the day in solitude on the couch. Additionally, I felt like I had to be one step ahead and ready for battle when dealing with the specialists, which became a major trigger of frustration. I became more frustrated than ever before with not knowing my diagnosis and I felt that the specialists due to their methods, attitudes, lack of interest, etc., were wasting time. Finally, my biggest frustration was the inability to explain to other people how it feels when the symptoms are present. I never felt that anyone understood completely what I was feeling and trying to express.

During this period, the big “D” entered my life. Yes, whenever my symptoms would return I would be hit with an overwhelming feeling of depression. At first, this really frightened me, because it was a feeling I had never been exposed to before. Initially, I really did not understand that the feeling was in fact, depression. Of course, I began to do some research on the internet, and the information I found explained it all. It appears that when the dopamine levels in the brain are low, such as in between doses or when completely off medications, depression can manifest in the same manner that motor symptoms return. Depression is known as a non-motor symptom of Parkinson’s Disease. This appeared to be what was happening in my case. If my motor symptoms returned to a significant degree, depression would envelope me also. The next dose of Sinemet, which helps with controlling the motor symptoms, would also alleviate the depression. Therefore, I only had to deal with depression during those times when my dopamine levels were low, which I tried to prevent as much as possible.

Loss and mourning go hand in hand. This was the beginning of the sense of loss and mourning for those losses. The feeling of loss involved many factors, primarily the loss of my ability to maintain the fast-paced lifestyle I had always thrived on. I mourned the loss of my ability to work. In many ways, I felt as if I had completely lost the person I once was and had no idea how to deal with the person I was becoming. Additionally, the loss of complete independence and having to rely on other people for certain things was one of the greatest aspects of my former self that I mourned. I had been independent my entire life, and for the first time, I began to realize that my independence and self-reliance were now becoming a part of my past life.

I believe that loss and mourning are such strong emotions for someone dealing with a chronic illness, that often they become barriers to acceptance of the chronic condition, even if the chronic condition has not been firmly diagnosed. It was not until I was able to accept my various losses associated with my condition and get through my mourning of those losses, that I was finally able to envision a positive future, despite my physical health. Once this occurred I began searching out new interests to replace the activities that I was no longer able to do. This enabled me to wake up each morning with new purpose and helped me to realize that there were many things I could still do.

Finally, guilt was a heavy feeling that entered my life. Although my health condition was beyond my control, I began to feel guilty for the burden I felt I was becoming, in the lives of my family, especially my husband. I was no longer able to contribute as much financially as I had been. My condition would sometimes dictate when and for how long we were able to go places. These are just two examples of situations that fueled my guilt. I spoke openly with him about this feeling many times, and each time he would reassure me that I was not the burden I perceived myself to be. He would always say that he fell in love with my heart and my mind, rather than the physical condition of my body. Despite his words, the feelings of guilt, whether rational or not, were and still are difficult to remove from my life.

Through this initial diagnosis process, there were only a handful of people who I shared all of the information I had with respect to my health. My faith in God played a key role whenever I had to deal with these emotional factors of my condition. There were many times when the emotions were so overwhelming, and the only way to get through the negative feeling, was to turn it over to God and let him take control. He always brought me through the rough patches without fail.

The Lord provided a partner here on earth that became my daily strength and the voice of reason whenever my emotions were running in high gear. This partner was my husband. When I needed to talk, he would listen for as long as needed, sometimes for several hours, allowing me to work through my emotions. If I needed to cry, which I rarely ever did prior to this disease, he would hold me for as long as I needed, until I completely cried out whatever emotion I was experiencing. My husband has only spoken words of encouragement with respect to my condition, and has never made me feel like our lives are less full because of it. When I am walking slowly, he holds my hand, and has learned to let me speak for myself even if it takes ten times longer than normal. When my husband has done everything he can to help me through a bad emotional event without success, he is the one who reminds me that it is time to give it to the Lord to deal with. My husband is my partner and best friend on earth. The Lord is my Savior who carries my burdens when we no longer can.

Communicating With Your Physicians - Part 2

2007-09-25T00:33:00.000-07:00

In part one, I addressed the importance of effective written and verbal communication when communicating with a Primary Care Physician or Specialist. I gave examples of various situations that often arise and the type(s) of communication I normally choose to utilize for those situations. Additionally, I outlined some of the benefits and protections that the patient gains through effective verbal communication, and to a greater degree through written communication.

In part two I am going to offer suggestions on how a patient can be more effective in both verbal and written communication. Keep in mind that effective communication is only beneficial if the patient has a patient friendly physician.

Verbal Communication

I will outline below the key elements of verbal communication that are particularly important when communicating with physicians, and I will include examples.

1. Prior to any visit with a physician, the patient should make a list of all issues that he / she wants to address during the visit. Example: new symptoms, changes in existing symptoms, medication changes, alternative treatment options, etc. This will insure that the patient does not leave anything out due to faulty memory. Obviously, there will not be effective communication at all, if the patient cannot remember what he / she wanted to discuss.

2. Listen to what the physician is communicating, more than how he / she is communicating. Example: A physician may speak in a tone that may give the impression that the physician is skeptical of or not interested in a patient’s medical situation. That may be the case, or it may be just the way that the physician speaks, and is not a reflection on his / her actual opinion. If a patient moves into a defensive mode because of the manner of speaking, he / she may miss the information that the physician is trying to provide. Rather than concentrating on “how the words” are spoken, the patient needs to maintain his / her focus “on the words” that are being spoken.

3. The patient needs to make sure that he / she fully understands what the physician is communicating. Example: If the patient is unclear of something the physician just said, the patient can repeat back to the physician (paraphrase) what the physician just said. The patient should then ask, “Is that correct?” Once the physician confirms that the words the patient repeated back to him / her are correct, the patient can ask additional questions if further clarification is necessary.

4. The patient must be willing to state his / her position or opinion in a polite but firm manner, even if it is not in agreement with the physician’s position or opinion. Example: The physician tells the patient that it is not necessary to order an MRI of the lower back, although the patient has had radiating back pain for over a year. An X-ray two months prior did not produce the cause. This patient has done research and now understands that the type of pain he / she has been experiencing could be caused by a herniated disc or some other soft tissue injury, which will can not be seen on standard X-rays. The patient should communicate to the physician the information he / she believes to be relevent, remind the physician of the duration of time the pain has been present, and firmly state that it is his / her understanding that an MRI of the lower back is the best way to determine the source of the symptoms. By making a firm, educated statement, the physician is now obligated to provide specific reasons for his / her position. On the other hand, the physician may now concur with the patient’s educated statements and request the MRI. (I have had both scenarios occur.)

5. The patient must communicate in a clear, descriptive, and detailed manner. Example: A patient is seeing his / her Primary Care Physician for an abdominal problem and says, “My stomach hurts when I eat, but it does not hurt every time I eat”. Although a physician should ask multiple questions in response to this vague statement, this may not happen. This vague statement leaves the option open for a physician, especially one who is running behind schedule, to make a quick diagnosis of convenience, rather than take the time to extract more information from the patient.

The patient with the abdominal problems must clearly communicate the following information:

1. Type of pain (burning, stabbing, constant, intermittent, etc.)
2. The specific portion of the abdominal area affected by this pain
3. When the pain occurs (after meals, before meals, before bed, etc.)
4. How often the pain occurs (after every meal, daily, weekly, etc.)
5. Conditions that contribute to the pain (types of food, time of day, exercise after a meal, exercise prior to a meal, etc.)

By providing clear, descriptive, and detailed information, the patient enables the
physician to offer a more accurate initial differential diagnosis. It also provides enough information for the physician to quickly determine what type of diagnostic tests should be done, as well as a possible initial treatment plan to ease symptoms. Communicating in this manner saves time during the visit by limiting the number of back and forth questions and answers. This is especially important when dealing with a physician who is running behind schedule and is trying to limit the time spent with each patient in order to catch up.

6. A patient should communicate with emotion and feeling, but should not react emotionally. (This is easier said than done.) Example: If the patient is told something by a physician that he / she disagrees with, the patient can verbally respond in a passionate manner in order to get a point across or for emphasis on that topic. However, if the patient becomes visibly angry or bursts into tears, this can be very detrimental, especially if the patient is being told that his / her physical symptoms are being caused by a mental health disorder. These types of emotional reactions or outbursts will only serve to strengthen the physician’s opinion that the symptoms are mental health related rather than being caused by a physical medical condition. Even if mental health is not in question, a physician may be less inclined to want to work with the patient, if the patient is unable to keep emotional outbursts under control.

7. Before allowing a visit to end, the patient needs to inquire and understand the follow-up protocol, as well as a date for the follow-up. Example: A patient is trying a new treatment for a chronic condition. Any new treatment should include a follow-up appointment, especially if associated with a chronic condition. The patient should not allow for an open-ended statement such as, “Try this and call me if there are any problems”. Because the patient has a chronic condition, there should already be regularly scheduled follow-up visits in place. If this is not the case, the patient should insist on a follow-up visit, including the date the follow-up would take place. Depending on circumstances, at the bare minimum, a telephone follow-up should at least be scheduled.

8. Prior to any appointment, a patient should research medical terminologies associated with the chronic condition, as well as the medical terminologies often associated with the field of medicine that the chronic condition falls under – Example: A patient has been given a differential diagnosis of Parkinson’s Disease and is seeing a Movement Disorder Specialist. During the visit the patient should use the most accurate medical terminologies when discussing
symptoms, previous diagnostic testing, medications, etc. This will allow the physician to get a more accurate picture of what the patient has been or is currently experiencing. The greatest benefit of using and understanding the correct medical terminologies is that it demonstrates to the physician that you have a firm understanding of not only the differential diagnosis, but of other associated conditions. Because the patient has educated himself, it makes it more difficult for a physician to offer a diagnosis of convenience or statements contrary to known facts about the condition.

Written Communication

I will outline below the key elements of written communication that are particularly important when communicating with physicians, and I will include a sample written correspondence.

1. If the written correspondence is in letterform, which is my preference, always include the date, name of physician, physician’s address, subject of correspondence, and correspondence delivery method.

2. In the opening paragraph, provide a short, detailed summary that includes the purpose for the correspondence. If it is a summary being sent to the patient’s Primary Care Physician, in reference to a visit with a specialist, include the specialist’s name, location, and the date of the visit. Likewise, if it is in reference to concerns with or changes in a patient’s medical condition, the date of the patient’s previous visit and the specific concerns or changes since that visit should be included.

3. In the body of the correspondence, provide the details clearly. It is particularly important to use appropriate medical terminologies when corresponding in writing. Each paragraph should be limited to one subject, concern, symptom change, etc. Too many subject matters in one paragraph can cause confusion and may promote a less clear picture of the patient’s purpose for addressing the subjects.

4. Once all individual subjects have been addressed, the next paragraph should include either a summarization, if known, of future visits with a specialist, treatments, goals, or a question on how the physician would like to proceed based on the information in the correspondence.

5. The final paragraph should include a statement of thanks to the physician. A sentence that states that the patient looks forward to hearing from the physician should be included. This type of statement lets the physician know that you expect some form of response to the correspondence.

Sample: Written Correspondence to Primary Care Physician

September 24, 2007

Dr. Physician’s Name
1111 Any Street. Suite 1
Any City, Any State, Zip

Re: Patient’s Name – New Symptoms and Medication Concerns

Via Facsimile: xxx-xxx-xxxx

Dear Dr. Physician’s Name

Since my last visit with you on July 1, 2007, I have had two new symptoms develop, that I believe relate to my condition. I am now experiencing insomnia and multiple awakenings during the night. Additionally, the medications I am taking for this condition are not controlling my symptoms as well as they were. As you may recall, I am taking medication A and medication B for the last six months with positive results up until two weeks ago.

Within the last two weeks, I have had multiple episodes of insomnia. Most evenings I got to bed at 10:00 P.M. It usually takes no longer than twenty minutes to fall asleep. I have had difficulty falling asleep on ten of the last fourteen nights. On those evenings it has taken anywhere from two to four hours to fall asleep. I have had no recent lifestyle changes or stressors that could be contributing to this problem.

The multiple awakenings during the night began to occur at the same time as the insomnia. This now appears a nightly occurrence. On most nights, I wake up approximately six times per night. Of those awakenings, only one can be attributed to needing to use the bathroom. The rest appear to have no known cause. Again, I have no recent lifestyle changes or stressors that could be contributing to this problem.

For the last six months, medication A and medication B have been sufficiently controlling most of my symptoms. I have been taking both medications every four hours as directed. Two weeks ago, I noticed that my symptoms would return three hours after taking the previous dose. As a result, I now have one hour per every four-hour period that I must deal with the symptoms at their maximum levels. This has caused a great deal of hardship for my family and me. This change in effectiveness has been consistent throughout the entire two-week period.

At this time, I think it may be necessary to return to the specialist in order to address the new symptoms and medication issues. The onset of new symptoms appears to correspond with the onset of medication issues. Historically, it normally takes four to six weeks before an appointment is available with the specialist. If this is the case currently, should I make an appointment to see you in the interim? If you do not believe that an appointment with you is necessary at this time, then I would like to request that a prescription sleep aid be called in to my pharmacy. If it enables me to get a few more hours of sleep each night, I will be better able to handle the four to six week wait to see the specialist. I also believe I can handle dealing with my symptoms returning every four hours. Additionally, if it is possible, I would appreciate if your office could expedite the referral to the specialist.

Please let me know how you would like to proceed. I look forward to hearing from you. As always, thank you in advance for your assistance.

Sincerely,

Patient With A Plan

This correspondence provides clear and accurate information to the Primary Care Physician with respect to the patient’s immediate concerns. Additionally, it provides a potential temporary solution for those concerns, until they can be addressed appropriately. In the manner written, this correspondence reflects the patient’s comfort level with the physician. The patient does not hesitate to state the need for a referral to a specialist, nor does the patient hesitate to offer input for an immediate course of action. A good doctor / patient relationship is evident, as well as the patient’s previous experience in dealing with the changes that can occur with a chronic condition.

Although personal information was not included, this correspondence represents my personal experience with this scenario. More often than not, my Primary Care Physician will call me, rather than have me come in for an appointment. This of course depends on the severity of the situation. Additionally, he has often been willing to call in prescriptions when situations warrant, as long as it does not pose a risk to my health. Again, because I have a good relationship with my Primary Care Physician, which was built through effective communication, there is a mutual understanding that my healthcare is a team effort.

The willingness to correspond directly with me outside of an office visit is something that is not common in the medical world today. In fact, this is the first Primary Care Physician that I have met, who goes above and beyond with respect to communication. There is no guarantee that a patient who communicates effectively will have the same exact results. However, the patient who communicates in an effective manner, both verbally and in writing, has a better chance of building a good relationship with his / her physician. That relationship, along with effective communication, provides the patient with the security that is essential when dealing with any chronic condition.

Communicating With Your Physicians - Part 1

2007-09-18T22:36:00.000-07:00

Communication between patient and physician is an important factor in the diagnosis process. At one time, I thought that verbal communication was the only form of communication necessary, when communicating with my physicians. I have since changed my opinion.

There was a time when I only saw my Primary Care Provider for an annual exam. I was normally a healthy person, and I was not prone to automatically seeing a physician for minor illness. Therefore, a quality doctor / patient relationship was not established with my primary care physicians during my healthy years.

Once I began having medical problems, I went through two Primary Care Physicians, prior to finding a patient friendly physician who was willing to work with me. Since I had become a frequent visitor to my Primary Care Physician’s office, the development of a good doctor / patient relationship was able to take root. Familiarity, as well as communication during appointments, helped to solidify a good working relationship between us. Unfortunately, he retired prior to my symptoms progressing enough for him to render a differential diagnosis.

My current Primary Care Physician inherited me because of my previous physician’s retirement. In the beginning, I was not sure that he and I would be a good match for an acceptable doctor / patient relationship. However, I did not throw in the towel. One afternoon we engaged in an intense verbal discussion by phone, which turned the potentially disastrous doctor / patient relationship into probably the best doctor / patient relationship I have had to this date. Clear communication and some human emotion had turned this relationship around.

While I was a patient of the now retired Primary Care Physician, I incorporated written communication into my doctor / patient relationship. As it became clear that I was potentially dealing with a chronic illness, I wanted to insure that every symptom I experienced was communicated and documented. My previous Primary Care Physician was very thorough at taking notes, but for my own peace of mind, I wanted my symptoms and other health related concerns, documented in writing from my perspective as the patient. Additionally, not all physicians are thorough when taking notes, and there are often key pieces of information that are left out. Therefore, when a patient brings up a previously discussed symptom at a future date, and if that symptom never made it into the notes, the physician is very likely not to recall ever discussing the symptom. Physicians see so many patients, that it is impossible for them to remember every word of every verbal communication with every patient.

It is now my standard practice to communicate with physicians verbally, as well as in writing. The type of circumstance dictates whether I utilize verbal communication, written communication, or both forms of communication. The following is a list of various scenarios, and the type of communication I will normally use:

1. Office visit with Primary Care Physician for minor illness or basic follow-up appointment – verbal communication

2. Initial visit with a Movement Disorder Specialist or other specialist – verbal and written communication. If time permits, I send a letter of introduction and copies of my medical records, prior to the appointment. I also make sure to bring backup copies with me to the appointment, in the event that my letter and medical record copies somehow did not make it into the physician’s hands.

3. Follow-up visit with a Movement Disorder Specialist or other specialist – verbal and written communication. Prior to the appointment, I write a brief summary including symptoms, changes in symptoms, medication problems, etc., to give to the specialist during the appointment. This summary not only helps me to remember the topics I want to verbally discuss during the appointment, but also serves as a permanent record that the information was provided to the physician on that date.

4. Non-office visit follow-up with Primary Care Physician after seeing a specialist – verbal and written communication. Following a visit with a specialist, I write an informational short report detailing the visit. This includes information pertaining to symptoms, treatment, topics discussed with the specialist, and future visits. Additionally, I include a copy of any written communication I had given to the specialist. I then fax these items to my Primary Care Physician’s office, and call to make sure they were received.

5. New concerns, which may or may not be related to my spinal condition or Parkinsonism, that I want my Primary Care Physician to be aware of – verbal and written communication. I call my Primary Care Physician’s office and provide a brief description of my concerns to his office assistant. I then write a more detailed summary of my concerns and fax it to my Primary Care Physician’s office. Again, I then place a call to his office to confirm that my fax was received.

Why do I now communicate with physicians both verbally and in writing?

Verbal Communication

Verbal communication is obviously the primary form of communication used during a visit with a physician. During a visit with a specialist, a patient verbally describes his / her symptoms, duration of symptoms, differential diagnosis, diagnostic tests performed, and current treatment(s) to date. Likewise, a physician may verbally ask questions for clarification, explain his / her findings after examining the patient, present a need for further diagnostic testing / evaluation, and render a preliminary diagnosis with a treatment plan. A patient will normally be able to ask questions, in order to make sure he or she fully understands what the physician has said. Even if the specialist does not render a diagnosis during the visit, if the verbal communication is adequate, the patient will understand the physician’s course of action necessary to assist with the diagnosis process.

Written Communication

I have found that written communication is an important tool, especially for the patient who has an undiagnosed chronic condition. Additionally, for patients who do have a diagnosis, written communication is a great way to keep your Primary Care Physician, as well as your entire team of physicians, informed on any changes in your condition, in between appointments. Aside from and including some of the situations that I have previously listed, here are a few examples of the benefits of establishing written communication with your physicians:

1. Patient provided written documentation of symptoms gives an exact description and complete information that leaves little room for misinterpretation. Verbal communications have the potential to allow incorrect interpretation and potentially incorrect note documentation with respect to the patient’s symptoms. Patient provided written documentation eliminates these issues, because it is the patient’s accurate, first hand account that can be added to the patient’s chart for future reference by the physician.

2. Patient provided written documentation of changes in the chronic illness helps in two manners. First, if it is provided to a physician during a visit, it gives an accurate, first hand account of those changes. Again, a patient can request that the documentation be added to the patient’s records / chart. If the patient is in-between visits, he / she can fax the written account of the changes to the physician’s office. This allows the physician to determine whether or not the issues need to be addressed immediately, or if the issues can be addressed at the patient’s next appointment. I have found that my Primary Care Physician will often call me to discuss my correspondence, and then he will determine the necessity for an earlier visit.

3. Patient provided written documentation provides security for the patient. In my experience, there are times when a physician may not recall a specific issue of a verbal conversation with a patient, and may not have taken detailed notes of that conversation. For example, a patient may be at an appointment and wants to talk about a symptom that had been discussed six months ago. The patient goes on to describe changes involving that symptom. The physician states he / she does not recall discussing this particular symptom and it is not noted in your patient file. In this scenario, a patient may then remind the physician of the previous verbal conversation and can offer to provide him / her with another copy of the written documentation. Providing written documentation to your physician and having it added to your patient file provides the patient the security of knowing that there is an accurate record of any concern, new symptom, medication issues, etc. in the physician’s possession.

Another aspect of security provided to the patient who provides written documentation, is that it tells the story of your “history” with respect to the diagnosed or undiagnosed medical condition. This history becomes a great asset if the patient applies for permanent disability through Social Security. When the Social Security Administration sends out a request for your medical records, your written documentation / correspondence with your physician, can assist in establishing degree of disability, progression, length of chronic illness, etc. It also provides evidence that the medical condition causing the disability has existed for an extended period of time, and it is likely to continue.

Here is my personal example of how written documentation saved me from an incorrect differential diagnosis that could have potentially caused an enormous delay is my search for a diagnosis. I have written of this previously, but it deserves additional attention at this point.

When my symptoms progressed to a point where every aspect of my daily life was affected, I made an appointment with my Primary Care Physician. My physician had previously not observed most of my symptoms, due to their intermittent frequency in the beginning. Being the master procrastinator that I am, by the time I finally went to see my physician, my symptoms were not only constant, but also profound. The most prominent features were my extremely slow walking pace and the quality of my speech, which was low in volume and slow. By this time, I had virtually no facial expressions or bodily animations when speaking.

When my physician saw me in this condition, he was shocked. After speaking to my husband and me and performing an exam, he stated that I was possibly bi-polar. He also did not recall ever hearing about these symptoms before this particular visit. My husband was with me for this appointment, and he began to explain to my physician that my symptoms reminded him of his mother, who had been diagnosed with Parkinson’s Disease prior to her death. He also let my physician know that he had never observed any signs of depression, bi-polar disorder, or any other mental health related condition in the six years that he has known me. My physician agreed to prescribe Sinemet, which I still take today. He also believed an appointment with a Psychiatrist was needed.

That afternoon someone from my physician’s office called me to give me the name of a Psychiatrist that my physician wanted me to see. I was annoyed that he was still going down this trail, but I wrote the name of the Psychiatrist down. At this point, the biggest thing that was bothering me was that I was certain I had previously told my physician about all of the symptoms.

That evening I began going through all of my copies of written correspondence that I had given to my physician on previous occasions. I not only found written correspondence from two years prior that had detailed many of the symptoms to that date, but also written correspondence to my previous physician that noted a few of the symptoms that had emerged during that time period. Both correspondences should have been in my patient records file at my physician’s office. So, at this point I became even more upset about the initial bi-polar opinion. I composed a new written correspondence, detailing the beneficial effect of Sinemet on my symptoms, as well as referencing my previous correspondences. I faxed this new correspondence along with the previous correspondences to my physician’s office. Within an hour of that fax, my physician called to apologize and let me know that I would receive a referral to a Movement Disorder Specialist, and that there was not a need to see the Psychiatrist at this time.

Had I not implemented written communication into my relationship with my physicians, I believe that valuable time might have been wasted while chasing after a mental health disorder that did not exist. Of course, a few months later I took the steps necessary, as I noted in a previous post, to insure that in the future, mental health conditions could not be offered as the source of my condition. Additionally, had I not retained copies of my previous written communications, I would not have been able to offer proof that I had already shared that information with my physician. I also would not have had the ability to prove that the symptoms even existed prior to the most recent appointment.

In the second part of communicating with your physicians, I will better define some key elements that can assist a patient on how to be more effective in communicating both verbally and in writing. I will also post a “sample” written correspondence.

Internet Education During Diagnosis Process

2007-09-13T22:52:00.000-07:00

I have previously written about the value of the Internet when trying to find a patient friendly physician. Additionally, the Internet has become my main research tool since I first began my search to find the cause or causes of my various symptoms. The Internet holds a vast amount of information, in one convenient location, which is so important when a patient is dealing with an undiagnosed condition. I have spent more hours than I can count, researching my symptoms one by one, cross-referencing conditions, and essentially ruling out conditions that were not applicable. This is not an example of a patient playing doctor. I was a patient, who took charge of her health by doing research, and who educated herself enough to be able to ask the right questions to specialists that needed answers.

Although we have been taught to depend upon physicians in the medical community to provide all of the answers for our healthcare needs, I have learned that taking this approach is not beneficial. I acknowledge that physicians have more knowledge about medical related issues than I will ever be able to glean from the Internet. However, each physician’s knowledge base differs, largely due to his or her specialty. For example:

1. A Primary Care Physician is a physician who provides both the first contact for a person with an undiagnosed health concern as well as continuing care of varied medical conditions, not limited by cause, organ system, or diagnosis. This physician can determine the cause of many acute conditions, such as an ear infection or a virus. Although a Primary Care Physician is not restricted from diagnosing a chronic illness, and will often render a differential diagnosis, many will refer a patient to a specialist that is specifically trained in a category of illnesses, to insure that the differential diagnosis is accurate. I personally believe that this action contributes significantly to the patient’s peace of mind, allowing the patient the peace of mind, knowing that the differential diagnosis is the correct one.

2. A Neurologist is a specialist who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles. A patient might be referred to a Neurologist if the primary care physician suspects a stroke, cerebral palsy, or a brain tumor.

3. A Movement Disorder Specialist is a Neurologist who sub-specializes in a group of similar neurological conditions that affect the way the body functions. Parkinson’s Disease, Dystonia, and Tourette syndrome are examples of conditions that would prompt a referral to a Movement Disorder Specialist.

4. A Rheumatologist is a physician who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones. Under the Rheumatology umbrella, there are more than 200 types of these diseases, including rheumatoid arthritis, osteoarthritis, gout, lupus, back pain, osteoporosis, and fibromyalgia. Many of these conditions can be difficult to diagnose.

It is not by chance that I mention the above referenced physicians. From my experience, these physicians are the ones that a patient may see when the motor functioning of the body is in question. Specifically, I am referring to chronic conditions that may affect movement, coordination, balance, muscles, joints, etc. This would exclude other types of chronic illnesses such as heart related conditions, internal organ function, cancer, etc. I have learned that symptoms of chronic conditions affecting the motor function of the body can often be symptoms of either a rheumatic disease or a neurological disease. Because of this, a patient may be sent to see a Rheumatologist to investigate a rheumatic cause for the symptoms, and may then be sent to see a Neurologist to investigate a neurological cause for the symptoms.

One of the first specialists I initially saw was a Rheumatologist. I was sent to the Rheumatologist for an evaluation, specifically to rule out or confirm fibromyalgia. In addition to the fibromyalgia evaluation, my Rheumatologist ran specific blood tests to rule out other rheumatic diseases that she thought could be causing my symptoms. After her evaluation was complete, it was her opinion that my symptoms were neurological in nature.

From this point forward, I began seeing Neurologists, which includes Movement Disorder Specialists, through my insurance and as a private pay patient.

Rheumatologist – When I was referred for an evaluation, specifically for fibromyalgia, I spent multiple hours on the Internet to learn as much as possible about the condition. Additionally, I familiarized myself with some of the more well known rheumatic conditions, but only those conditions that had the potential to be the cause of my symptoms. I also made sure that I understood the types of blood tests and other diagnostic testing that are often ordered when rheumatic conditions are being considered. By educating myself, about not only fibromyalgia, but also the various other rheumatic conditions, I was able communicate effectively with the Rheumatologist during the visit. It enabled me to understand, the medical terminologies she used, why she ordered certain blood tests, and fully comprehend her opinion that my symptoms were neurological in nature. Finally, the greatest benefit I received by doing this research was confidence. I now had the knowledge to know the right questions to ask, the knowledge to understand the answers given, and the knowledge to know when an answer was contrary to what I had learned through my research.

Neurologist / Movement Disorder Specialist – I have been evaluated for neurological conditions by several Neurologists and Movement Disorder Specialists. I performed the same types of research for neurology as I had for rheumatology. When Multiple Sclerosis was a potential diagnosis, I learned everything I could about it, other potential neurological conditions, as well as appropriate testing through the Internet. A few years later when Parkinson’s Disease and Dopa-Responsive Dystonia became the focus, I learned everything I could about those conditions, as well as learning the difference between a Movement Disorder Specialist and a Neurologist. Based on my last visit with the Movement Disorder Specialist, I am now learning all I can about the various Parkinson-Plus conditions, again using the Internet.

Some people may say that I went to the extreme with respect to my Internet research. I have spent many years searching for a diagnosis. The many roadblocks in that search inspired me to educate myself enough, to be able to remove those roadblocks. Without knowledge, a patient places himself in the position of blind acceptance, and is fully dependent on someone else with respect to his or her health. I prefer to be a team participant with my physicians, rather than sit on the sidelines, anticipating whether someone else will reach that goal line.

Information that is invaluable to a patient during the diagnosis process and prior to any visit with a specialist is as follows:

1. Research the condition, which may have been a differential diagnosis from your Primary Care Provider. Understand the symptoms, causes, diagnostic testing, and treatment for the condition.

2. Research your symptoms to see if there are additional conditions that could be causing your symptoms. Make note of these conditions, so that you can discuss them with the specialist during the visit.

3. Research types of diagnostic tests that are routinely done for the category of conditions that the specialist treats, including blood tests, MRI’s, CAT Scans, etc.

4. Research some of the medical terminologies that a specialist may use for the conditions that he / she treats. Often, no additional research is needed with respect to medical terminologies, because they are often inclusive within research done on conditions, symptoms, testing, etc. I have found that Wikipedia, which is a free online encyclopedia, is a great resource for medical research, especially with respect to medical terminologies that are difficult to understand. I will post a link to this site in “Resources for PD, PD-Plus and other Movement Disorders”.

5. Educate yourself about the type of specialist you will be seeing. If you are going to see a Rheumatologist, make certain you have a general understanding of what a Rheumatologist is and the types of conditions he or she treats. Wikipedia is an excellent source for this research.

In summary, the Internet is the most effective and readily available tool I have used, when doing research on any topic involving my health. It is my primary source for information on physicians, medical conditions, symptoms, treatments, support groups, and any other health topic I may want to research. I have yet to find a topic of interest that was not available on the Internet. The Internet can provide a patient with knowledge. That knowledge provides the patient with the power to insure that the professionals within the medical community address his or her health in an appropriate manner that equals the patient’s expectations.

Personal Medical Journal September & October 2007

2007-09-12T00:01:00.000-07:00

September 12, 2007

During the last two weeks, I have had some new aspects of my condition come into my life. There have been a few occasions where my medications have appeared to fail to address my symptoms to the level they normally do, then stop working altogether until my next dose. Additionally, there have been a few occasions where the medication kicks in fine, but my symptoms then return to some degree, only to improve again. Finally, my blood pressure has been acting up more frequently. When I have felt myself getting dizzy, my blood pressure is normally below 90/60.

What concerns me about these changes is that all of these could be indicative that my diagnosis is leaning more toward a PD-Plus condition. Although most PD-Plus conditions do not respond or do not respond significantly to Sinemet, I have read that younger people appear to have response that is more favorable. (Multiple System Atrophy) Up to 28% of people with MSA respond well to Sinemet for the Parkinsonism symptoms, but only 13% retain any benefit from Sinemet. Although I have had several occasions of drops in blood pressure over the last ten years, it is hard to determine if the increase in incidents is due to the condition or the Mirapex that I take.

There are only a couple of possible scenarios.

The first scenario is that I am experiencing the motor fluctuations that can occur in young onset Parkinson’s Disease patients, who are taking levodopa. (Sinemet) I have read that young onset PD patients can begin to experience dyskinesias and motor fluctuation within the first year of treatment. With respect to the blood pressure issue, it is either totally unrelated to the condition, or it is part of the Parkinson’s Disease, but is more advanced than what would be expected. Autonomic dysfunction is definitely part of Parkinson’s Disease, but those types of issues do not normally develop until late in the course of the disease.

Unfortunately, the other scenario is that I am actually dealing with a PD-Plus condition, and the PD drugs that are normally prescribed for the Parkinsonism symptoms, are beginning to lose their effectiveness. Likewise, the increase in low blood pressure incidents is easily attributed to a PD-Plus condition. If this is the case, I can only wonder how long it will take before the meds no longer have any beneficial effect on my symptoms, and how that situation would affect the progression of symptoms.

I know how slow and unstable my walking is, as well as how bad my speech is, when my symptoms return at night before my Sinemet CR kicks in, or when I have the problems described above. I also know how hard it is during these brief periods to deal with the return of symptoms. With this in mind, I try not to think about how hard it would be not having any improvement in the movement and speech symptoms.

Obviously, scenario number one is the most appealing scenario. Only time, and monitoring the progression of this condition, will shed some light on which condition I may actually be dealing with. Until then, I will continue to play in my garden, as much as I can, since it provides me with peace and much needed exercise. I will also continue writing this blog and hope that others may find something that is helpful for their situation. Most importantly, I will put all of this is God’s hands, knowing that He is much more capable of dealing with this than I am; and believing that whatever the outcome is, it will be no more than I can handle.

September 19, 2007

I am still having symptom breakthroughs. There does not appear to be any real pattern. One minute by symptoms have adequate coverage, and the next minute I am experience speech and walking issues. Then the symptoms will be covered again within 10-20 minutes. Also, I am still having times when the medication seems only partially effective. Again, there is no real pattern. It is a little embarrassing when it happens out in public. It happened a few weeks ago at the grocery store. My husband and I were getting ready to check out, and I became "slow". Rather than stay in the store, worrying if anyone would notice, I "slowly" made my way out to the truck, leaving my husband to check out. Since I was only fifteen minutes away from my next medication dose, I just went ahead and took it.

Sleeping is becoming a real issue again. I had been taking a sleeping pill a few months ago, but discontinued it once I started taking the Sinemet CR at night. There is definitely a difference in the quality of sleep, but I am still waking up multiple times some nights and still having difficulty falling asleep. I really do not like the idea of adding another medication, but I have read that inadequate sleep can have and affect on the symptoms. I may ask the specialist, when I see her in two weeks, if she can prescribe a sleeping medication that I can use a couple nights a week as needed.

My balance seems to be getting a little worse. There are times when I will begin to fall backward, and I have been lucky so far that I have not yet hit the ground. I think that this is due to the fact that when I have started to lose balance, it has most often been while standing up from a sitting position. If I am sitting on the edge of the bed and then stand up, the bed is there to catch me, so to speak. I was in the bathroom one night, and I began to fall backward. If their had not been a wall behind me, I really believe that I would have ended up on the floor. Additionally, I notice the balance problems when taking a shower. I do not seem to have any issues with falling forward.

So, all of these new changes will be addressed with the MDS in two weeks. I plan on not taking my medication that morning, so that she can see what I am like without the Sinemet. I do not look forward to that, but I think it is important for her to see. I was on the Sinemet during my initial visit, so she saw the symptoms to a lesser degree. The Mirapex does not seem to play too big of a roll in covering the symptoms. It only seems to have extended the length of time each Sinemet dose is effective.

I attended a PD support group yesterday, and it was very informative. There was a physical therapist as a guest speaker, and she showed the group some exercises that can help with muscle strengthening and balance. I plan to start doing these exercises, most of which can be done while sitting, to see if I can benefit from them. Additionally, there was another speaker who said she would call me with information on a support group near my home. The support group I went to yesterday was about an hour away from my home. It is worth the drive, so I will probably still attend that group, but additionally joining a more local group would benefit me in the event that the hour drive becomes too much. It would also give me the opportunity to meet people in my area who have PD or Parkinsonism.

Each day is a challenge, but it is also a blessing. The challenges serve as a vehicle to become stronger and to remind us to appreciate more fully when we have those happy moments. Seeing others who are in worse condition that I am, reminds me to appreciate the things that I still can do, instead of being upset about the things I no longer can. Since Parkinsonism became part of my every day life, it seems that I learn something new each day. I have learned to accept my condition and how it relateds to my life today, and I refuse to dwell on what may happen tomorrow. I will deal with tomorrow when it gets here.

October 8, 2007

I saw my MDS a few days ago for my three month follow-up. I went to the appointment without taking Sinemet, because I wanted her to see me with my symptoms in full force. During my previous appointment I was fully medicated. I absolutely hate allowing my symptoms to surface to the maximum level, but I thought it was important to do so for this appointment.

So, I was extremely slow, and my speech was terrible. She did a shortened version of a neuro exam, which my husband says I failed miserably. As soon as she finished her exam, I immediately took a Sinemet.

Having to deal with the symptoms really wears me out, so I was not able to discuss everything that I wanted to. We did agree to discontinue the Mirapex, because it was turning my mild Obsessive Compulsive Disorder, which is normally under control, into major OCD that was becoming out of control. We are replacing the Mirapex with Azilect, which is another class of drug. It will hopefully to what the Mirapex was doing, except without the OCD increase.

I told her about the medication issues I have been experiencing, as well as the increase in orthostatic hypotension. Again, it was so difficult to communicate, that I really did not ask the questions that I wanted to. I have a follow-up appointment in a month, rather than the usual three month follow-up, to see how I am handling the Azilect. I will definitely take that opportunity to discuss everything then.

My foremost question that I want to ask is if she is leaning in any particular direction with respect to the type of Parkinsonism I have. I know it may take some time before she can be definite, but I am curious of what her initial thoughts are. I guess I will just have to cool my heals and wait until next month. Until then, I plan to rigorously document the medication failures and blood pressure issues, so that I can address those more thoroughly. I feel like I am closer than ever to a diagnosis, and patience is not my strongest suit; everything happens in its own time.

October 17, 2007

I am in the middle of tapering off of the Mirapex, and I can feel a difference. The "off-times" seem to be more pronounced and increasing in frequency. I began taking the Azilect today. I did not appear to have any immediate adverse reactions, so that is a positive sign. Hopefully, once the Mirapex is completely out of my system, the Azilect will prove to be an equal or better replacement. It would be miraculous if it stopped the end of dose "wearing off" and "on-off" fluctuations altogether.

I went for a sleep study on the 9th, which was intended to confirm or rule out REM Behavior Sleep Disorder and Narcolepsy. Sleep disorders are common in Parkinson's Disease and Parkinson-Plus Disorders. Unfortunately, it is my opinion that the wrong type of study was done. I am not a doctor, so I plan to confirm this with my MDS in two weeks.

There are two main types of Polysomnograms that can be done, according to the information I found on the internet. One is specifically used to determine if sleep apnea is present. Basically, a patient is wired up with sensors and goes to sleep. After about 90 minutes, the patients is told to change sleeping positions. (Example: switch from sleeping on the back to sleeping on the side) After an additional 90 minutes the patient is awakened and fitted with a mask that is connected to a C-Pap machine. The patient goes back to sleep and is monitored while using the C-Pap machine. The second test is geared more toward ruling out REM Behavior Sleep Disorder and as part of the testing for Narcolepsy. The patient is still wired to various sensors, but is never awakened throughout the night or hooked up to a C-Pap machine.

I was given the first test. The problem with this is that I never entered into REM sleep during the test, due to frequent nocturnal arousals, as well as being wakened every 90 minutes. Therefore, having never entered into REM Sleep, it is my understanding, that it is impossible to determine if I do have REM Behavior Sleep Disorder. Additionally, because the second test that is used in conjunction with a Polysomnogram for ruling out Narcolepsy was never done, it is impossible to determine whether or not I have Narcolepsy.

The only information that was gained by the test that was performed, is that I have multiple episodes of "hypopnea" while I sleep. In general terms this means that I have episodes of shallow breathing of less than 50% of normal, that cause arousals during sleep. Unlike true apnea, I do not stop breathing altogether. It also confirmed that I have multiple nocturnal arousals of unspecified origin that occur. These unspecified arousals continued even while attached to the C-Pap machine. Additionally, my sleep onset latency time indicated excessive sleepiness, and I only achieve 61% sleep efficiency. Normal sleep efficiency is 85%.

Again, I am not a doctor, but after researching my results on the internet, they raised more questions than there were prior to the sleep study. For example, apnea-hypopnea episodes are common in Multiple System Atrophy. These episodes can be decreased with anti-Parkinson medications, which I do take at night. This raises the question of whether or not the episodes would have been more numerous or severe had I not taken my medications the night of the sleep study. Frequent nocturnal arousals are common in both Parkinson's Disease and Parkinson-Plus Disorders. One of my original complaints was excessive daytime sleepiness, which the sleep onset latency time and the sleep efficiency percentage both support. Unfortunately, there is now no determination on the REM Behavior Sleep Disorder or Narcolepsy, but also no real explanation on what these results mean in terms of my condition. I fully intend to bring these issues up with my MDS for her interpretation. If I am correct in the opinion I have made based on my research, a second sleep study will need to be done.

It angered me quite a bit, because I had raised the question about the type of study being done, a week prior to the appointment. I was told that this is the standard test. I now believe that I was misinformed.

October 23, 2007

I have added the Azilect and will be completely off of the Mirapex in 6 days. I can really see a difference now with respect to both.

Since starting the Azilect I have not had any symptom breakthroughs (on-off). Although I still have end of dose wearing off, it occurs less often and with much less intensity. The symptoms return very slowly and to a much lesser degree. The only downside that I have noticed is that I am more tired during the day, and my energy level seems to have decreased quite a bit.

Now that I am down to a very small amount of Mirapex, I have noticed that my obsessive-compulsive behaviors are back to normal. Since I do have mild obsessive-compulsive disorder, I have always had minor obsessive-compulsive behaviors associated with the condition. While on the Mirapex, those behaviors increased significantly. I now feel that those behaviors are back to where they were prior to starting Mirapex. The best way to describe the difference is:

My "normal" mild obsessive-compulsive disorder does not interfere with my daily life. Although annoying at times, usually I am able to re-focus the behaviors on tasks that I need to accomplish, which actually helps me be more efficient and somewhat of a perfectionist. However, while taking the Mirapex, not only did the behaviors intensify, but I was no longer able to focus on anything that needed to get done. I was only able to focus, to the extreme, on the tasks I wanted to do. I had no ability to focus on the tasks that I needed to do. I would push myself to extremes physically, because I was so obsessed with whatever I was doing at the time.

So far, it appears that the medication switch was a good decision. I am more than willing to be more tired during the day, rather than have extreme obsessive-compulsive behaviors. At least when I am tired, I can take a nap. I am hopeful that the Azilect will continue to help the Sinemet with controlling my symptoms. Of course, there are those symptoms that appear to not be helped as much as others, such as speech and balance. Therefore, I make extra efforts to speak clearly and with greater volume, and I try to be more aware of my surroundings due to my balance. Regardless of medications, each day is different from the next. I just take each day as it comes, and I do my best to avoid situations that make the symptoms worse.

I will add one last entry for the month of October as soon as I am completely off of the Mirapex.

Internet Support During The Diagnosis Process

2007-09-09T22:25:00.000-07:00

Within the last year, when it became apparent that I had a condition that was possibly Parkinson’s Disease or another form of Parkinsonism, I had the overwhelming desire to communicate with other patients with these conditions.

Originally, my potential diagnosis was either Dopa-Reponsive Dystonia or Young Onset Parkinson’s Disease. Both of these conditions respond to Sinemet, but the conditions are caused by two different mechanisms.

The first message board that I signed up for was DRD Central. This board is a support system for patients who have been diagnosed with Dopa-Responsive Dystonia. Because I did not have a firm diagnosis for any condition, I was concerned that I might not be welcome to participate on the board. Those fears were abolished by the responses I received to my first posting. Not only was I welcome, but the others were more than willing to answer questions about their own experiences with the condition, which gave me a vast amount of information, to compare to my own symptoms. Along with the communication between others and myself, the ability to read old posts served as a resource for additional information. Because of my experience with this board, I am going to include a link in “Resources for PD, PD-Plus and other Movement Disorders”.

The next message board that I signed up for was YOPA, which stands for Young Onset Parkinson’s Association. This board is a support system for patients who are diagnosed with Parkinson’s Disease. Again, not having a confirmed diagnosis did not prevent this group of people from making me feel welcome on the board. In fact, several people who participate on the board do not have a diagnosis. The people who have been diagnosed with Parkinson’s Disease, are very open to answering questions asked by those who do not have a diagnosis. It is a very friendly board, and the people who participate, whether diagnosed or not, are always there to offer words of encouragement and wisdom. Additionally, this board also has a chat room, as well as a place to ask a pharmacist questions about medications. Again, I will include a link to this site in “Resources for PD, PD-Plus and other Movement Disorders”.

Although there are several other online groups I have joined, the one that I am most active in is Daily Strength. What is unique about this site is that there are multiple boards that consist of mental health conditions, numerous medical conditions, relationships, and multiple self-help boards. Most people who are looking to communicate with others who share the same condition will be able to find a board to suit their needs. I obviously have signed up for the Parkinson’s Disease Board.

Daily Strength also has some other unique features that really make it feel like it is a family of friends. In fact, many refer to other posters as their DS Friends. A person can keep an online journal that can be read by anyone, or it can be locked, allowing only designated DS Friends to read it. People reading the journal can offer a response into the journal. Additionally, personal messages can be sent to individual users. The primary feature that makes the site more welcoming is the ability to create a profile that others can view. This profile is the user’s personal introduction, and a person may provide as little or as much information about himself or herself as they wish. It is a wonderful sight, and a link will be provided in “Resources for PD, PD-Plus and other Movement Disorders”.

The internet can provide statistics, symptoms, causes, and other pertinent information about medical conditions. However, the information shared between people who have the same chronic condition, puts the internet information into a more personal perspective. It gave me the opportunity to compare my symptoms and experiences, with others who have first hand experience with how Parkinson’s Disease or Parkinsonism affects their lives. Words read on the internet are just words. Words read on a message board in response to a post you made, lets you know that you are not alone with your condition.

These boards have allowed me to make contact with other people who have had or are having a difficult time trying to obtain a diagnosis for a chronic medical condition. Most of these people are in the Parkinsonism category for a potential diagnosis, since these are the boards I often frequent. Additionally, I have met others outside of these boards, who suffer from other forms of chronic illness, who also have had delays in diagnosis due to various circumstances involving the medical community. Some of these people were eventually diagnosed with chronic conditions that are easily identified through appropriate testing. These people, as well as the people from the boards, served as additional inspiration when I decided to write this blog.

Educations about my condition from the shared experiences of others, as well as support and encouragement, are only a few examples of what these boards have brought to my life. The most important and comforting knowledge they have provided me, is that I am not alone with my condition.

I have been blessed with family and friends who are supportive and offer me encouragement, for which I am very thankful. As important as they are in my life, none of them understands completely how this condition affects my life. They do not have a form of Parkinsonism, so they are not able to understand entirely how this condition affects my life. Therefore, it is the people I have communicated with through these boards, who can advise, encourage, and offer complete understanding. This is because they also experience the effects of this condition in their lives. They are an important part of the complete support system that I am lucky enough to have.

Based on my experiences, I would recommend to anyone who is diagnosed with a chronic medical condition, or is facing a diagnosis, to find a support group. Internet support groups have the advantage of being available to those people who have mobility issues that prevent attending a support group in person. It is also a great way to take the initial step into the support group arena, for those who may be hesitant to attend a local support group in person. Finally, I cannot say enough about the education, encouragement, and support that is given by others who participate on these support boards. If nothing else, it gives you a place to go, that will remind you that others completely understand what you are experiencing.

Mental Health - A Proactive Approach

2007-09-06T16:56:00.000-07:00

I decided to share one of the strategies that helped significantly, while on my diagnosis journey. I only wish that I had used this strategy earlier, because it could have saved me time in the end.

As I have detailed previously, I was told several times, by multiple physicians, that my symptoms were attributed to a mental health condition, such as depression, anxiety, and stress. This scenario occurred repeatedly for nine years.

In November of 2006, I decided that I needed to remove any physician’s ability, to diagnose my symptoms as mental health related. Therefore, I decided to do what these physicians did not. Using my medical insurance, I referred myself for an evaluation with a Psychologist. I intended to have an evaluation, in order for it to be made perfectly clear, that my mental health was not the cause of my physical symptoms. With my HMO plan, I do not have to have a referral from my primary care physician, in order to seek out mental health treatment. Therefore, my primary care physician was only made aware of my plan, once my evaluation with the Psychologist was complete.

When I met with the Psychologist, I outlined to him my reason for being there. I provided my complete medical history, so that he would understand the motivation behind my visit. Although my reason for seeing a Psychologist was to rule out mental health conditions, I entered into the process with an open mind and the understanding that I might not hear what I wanted. I had made the decision that if the Psychologist diagnosed a mental health condition that he felt was causing my physical symptoms, I would accept that diagnosis, and I would address the diagnosis appropriately with the proper treatment. I was not arrogant enough to ignore the slight possibility that my symptoms might be due to mental health issues, although I felt strongly that they were due to an unknown physical medical condition.

The Psychologist and I met weekly for a period of two and half months. During those visits, he asked many questions, in order to have as much information about me as possible. Some of these questions were about my childhood, my family life, work, and any other subject he thought would assist him with the evaluation. Additionally, he had me meet with a Psychiatrist, as an additional diagnostic source.

During this time, I had decided to go off Sinemet, because I was aggressively pursuing a diagnosis. I believe that the timing was beneficial, because the Psychologist was able to observe me when my symptoms were being helped with the Sinemet, and he had the opportunity to observe the difference while off Sinemet. It is my perception, that having the opportunity to see me under both conditions assisted him with his final diagnosis.

In January of 2007, the Psychologist informed me that he did not believe that further visits were necessary. He said that unless I just needed someone to talk to once I was given a diagnosis; there was not any purpose for future visits. He rendered opinions, one of which I was already aware of. He told me I had minor Obsessive-Compulsive Disorder that did not require treatment. Additionally, it was his opinion that I was suffering from minor Depression because of not knowing the cause of my physical symptoms, but not causing my physical symptoms.

Once the evaluation was complete, the first thought that came to my mind was “validation”. When I arrived home and told my husband about the Psychologist’s opinion, I broke down and cried. For so many years, I had been told I was depressed, anxious, or stressed, that I was suddenly overwhelmed by the magnitude of what this evaluation meant. For example, I now realized, without a shadow of doubt, that I had a physical medical condition that would eventually have a name to it. For so many years, I had been prescribed anti-depressants that were not needed. Additionally, for so many years I suffered through physical pain, which could have been avoided, had physicians not insisted that I had a mental health disorder. With this realization and validation, I gained new confidence, which has enabled me to be more firm when dealing with my most recent specialists.

Now when I see a specialist, if the subject of mental health issues is brought up, I let him / her know about the evaluation. I then offer to provide the contact information for the Psychologist who evaluated me. Not one specialist has felt it necessary to contact the Psychologist. I firmly believe that had I not proactively been evaluated, that it would have left the option open for any specialist or physician, to make an initial mental health related diagnosis. By choosing to have a mental health evaluation done, it opened the door to seeking out the physical condition that was causing my symptoms. At this point, all I needed was a patient friendly specialist to take an interest in my medical history, as well as my current symptoms. In July of this year, I found that specialist. Again, I only wish that I had thought to obtain a mental health evaluation sooner than I did. Being proactive in my approach to rule out mental health issues has helped to expedite the diagnosis process.

I have been in contact with other patients, who have also been informed that their symptoms are mental health related. It appears that Depression is the condition that is diagnosed most often. Like me, many of these patients are female. Many have been prescribed a variety of anti-depressants with no resolution for their symptoms. Additionally, many have never been referred to, or instructed to seek out, a mental health evaluation by a licensed Psychologist, Psychiatrist, or Therapist. In my experience, it appears to be common for a primary care physician or a specialist to make the diagnosis and prescribe anti-depressants, prolonging the proper testing and evaluation for a potential physical medical condition.

Nine years ago, had I known at that time what I know now, I would have obtained a mental health evaluation then. Hindsight is always 20/20. Therefore, if you are a patient with undiagnosed physical symptoms, and you are being told that they are due to a mental health condition, I would seek out an evaluation as quickly as possible.

If you do have a mental health condition that is causing the physical symptoms, then you will already be under the care of the appropriate specialist, who will be able to render treatment.

If it is determined that a mental health condition is not the cause of your physical symptoms, then you will have a great tool to use as proof that a physical medical condition does exist. It will give you the ability to insist, with confidence that the specialists concentrate only on medical conditions that exclude mental health. If a specialist or primary care physician still refuses to acknowledge that an undiagnosed medical condition may exist, then it is time to find one that will. Although you now know without a shadow of doubt that a non-mental health related condition is highly probable, you need a specialist who also has that opinion. It is imperative to find a specialist that is willing to work with your primary care physician and you as a team, to determine the true cause and appropriate treatment for your medical condition.

Turning Anger Into Something Positive

2007-09-04T17:08:00.000-07:00

Two nights ago, my husband and I were discussing this blog, and he said something that is worth reflecting on. He told me that he is very happy that I am writing this blog, because I am doing something positive with the anger I have had for so long.

My husband was not referring to anger due to my condition. Believe it or not, I am not angry about dealing with Parkinsonism. My husband was referring to the anger I have harbored for so long at the medical community.

What fueled my anger? One aspect of trying to find answers to my medical problems that angered me greatly, was consistently being told that my medical issues were due to depression. This was the “diagnosis” I most often received by physicians, without ever being referred to a psychologist, psychiatrist, or counselor for any type of evaluation. I was given samples or prescriptions for anti-depressants. I refer to depression, or any other diagnosis that has not been proven by testing, evaluation, etc., as a diagnosis of convenience. I will not elaborate on why I believe that a diagnosis of convenience is often handed out. I will say that the reason this particular diagnosis affected me so deeply, is because I was given this diagnosis early on, even though I did have a spinal condition that could have been easily identified through appropriate testing. Rather than being told I was depressed and prescribed anti-depressants, had the proper tests been ordered when I first began seeking treatment, the spinal problems would have been identified six years earlier than they were. I spent six years with various symptoms, which included pain. Instead of treating the actual physical medical condition, I was given various medications for a condition that never existed.

Another big trigger for my anger was being told that my symptoms were because I am female. The headaches I once had due to a cervical spine herniation, were attributed to my gender. Those headaches resolved after I had a cervical fusion. I am still a female, so why do I no longer have occipital headaches? Obviously, this was another diagnosis of convenience. Additionally, being female also contributes to the “depression” diagnosis; something about a female’s hormones changing and causing chemical changes in the brain, which cause depression, anxiety, additional stress, etc. Again, without the appropriate mental health evaluation, medical testing, and appropriate specialists, these types of medical opinions are not founded in facts.

Finally, the most difficult aspect, which fueled the anger in me more than anything else, was dealing with multiple physicians who were not patient friendly. It is my perspective, that had these physicians been patient friendly, the “diagnosis of convenience” scenarios would have never occurred. Had these physicians acknowledged my symptoms, I would have had fewer years of physical pain, frustration, unnecessary medications, and self-doubt. Self doubt? At times, I would doubt myself; because I was told so many times that no physical medical problems existed. Additionally, I would have been saved multiple years of knowing that something was physically wrong, but not knowing the cause. I will never understand why these physicians made the choices they did with respect to my requests for help. I have come to a point of forgiveness, with the hope that these physicians have evolved into patient friendly physicians, with the passage of time.

I have often wondered how these physicians would react, if I wrote each one a letter that detailed the medical conditions that have since been diagnosed, but were given a “diagnosis of convenience” while I was under their care. Would they be enlightened, or would they not care? Would they take a step back and analyze how effectively they deal with their patients? Would it assist even one, to recognize that the needs and wellbeing of the patient should be the physician’s top priorities? Physicians need to remember that as patients, we rely completely on them to assist us when our health is in jeopardy. Our lives are in their hands. The words they speak, and the actions they take, can be the patient’s biggest blessing or greatest nightmare. I may sit down one day and write those letters. For now, my priority lies with other patients like me, who are struggling to find the answers they need.

Being angry with the medical community never assisted me in my search for a diagnosis. The only thing my anger did was waste my time. Rather than giving up any more time to anger, I decided to take the lessons I have learned and share them.

I have only touched on a few methods that can assist a patient who is traveling through the diagnosis journey. There are so many other things that a patient can do to make the diagnosis process smoother, and I find myself getting frustrated, because I can only type so fast. I get so excited each day, waiting in anticipation, for the next moments that I will have available for writing in this blog. This excitement and desire to help other patients, has completely replaced the bitter anger that I had allowed to invade my heart. The actions and words of these physicians that caused the anger, have now become the nexus for something positive. I cannot change what happened in the past, but maybe I do have the ability to help change the amount of time it takes, and help reduce the frustration, for other patients who are now facing the challenges that I once did. It would be such a blessing to know that through sharing my experiences, I have made a beneficial contribution in someone else’s life.

My husband is the one person responsible for this change in direction. Each time the anger would rear its ugly head, he would calmly tell me to turn my anger over to God. Sometimes that is easier said then done. I will admit it took quite a while before I was willing to let the anger go, and turn it over to God. I did finally give up the anger, and in its place, God placed a plan in my heart. This blog, which allows me to share my experiences and the lessons I have learned along the way, is the plan I was given in exchange for my anger. My husband provided the guiding words, and God provided the healing.

Recommend A Specialist

2007-09-03T21:39:00.000-07:00

The primary intent of this blog is to share some tips I have learned over the years with others who are having difficulties with trying to find a diagnosis for a chronic condition, but I also have one other goal in mind. Before any patient can be diagnosed with any condition, he / she must first find a specialist that is patient friendly. From my experience, that is often easier said than done.

Knowing what you expect from a specialist and learning some tips on how to locate a patient friendly specialist are important. Part of my vision is to include links to specialists, whom other patients have found to be patient friendly, caring, and thorough. In a prior blog I made the comment that “word of mouth is the best advertising that money cannot buy”. With that understanding, I am seeking input from patients, friends of patients, or families of patients who have a form of Parkinsonism or other related movement disorder, who have found patient friendly specialists.

I intend to add an additional links section, which will include contact information for specialists who patients have found to be patient friendly. Although I am focusing on Parkinsonism and other related movement disorders, specialist recommendations for other chronic illnesses are welcome also.

I have come across so many people with movement disorders, who have or are having the same difficulties I have faced, with respect to finding or confirming a diagnosis, as well as finding a patient friendly specialist to render or confirm a diagnosis. These patients are not only in my geographical area, but also throughout the United States. If a recommendation list can be compiled, based solely on patients’ personal experiences with specialists, it can increase the odds significantly for someone else who may be having trouble finding a patient friendly specialist. It could help save another patient time, frustration, anger, tears, and the anxiety that is felt when the patient knows there is something wrong, but is unable to find a patient friendly specialist to help find the answers.

Parkinsonism and other associated movement disorders often take several years, from the onset of symptoms, to obtaining a diagnosis. The variability of symptoms and progression of symptoms, adds to the difficulty of the diagnostic process. Additionally, several movement disorders are diagnosed solely on a clinical basis, which is dependent on the symptoms of the patient. Many of the conditions are so similar, that it is difficult for the specialist to discern which condition a patient may actually have.

From my own personal experience, if your symptoms do not fit into the textbook criteria developed for diagnosing a condition, then you might be told there is no possibility that you may have that condition. For example, I had one specialist specifically state that I was “too young” to have Parkinson’s Disease. I also do not have predominant tremor, but I do have bradykinesia as my dominant symptom, which affects my walking and speech. I am definitely not a Parkinson’s Disease textbook case, so right out of the hole, I did not fit in to the textbook description of someone with Parkinson’s Disease. Now, I still do not know if I have Parkinson’s Disease, but I do know I have Parkinsonism that currently responds to Sinemet, and I went through four specialists to get to the Parkinsonism diagnosis.

So many other patients out there do not fit the textbook description for a movement disorder, but may eventually be given a diagnosis. It is easy to understand that a specialist will not make a diagnosis on the first visit. A patient may need to be followed for a significant length of time, before the specialist has enough information to render or confirm a diagnosis. This scenario would be acceptable to most patients. The most difficult aspect remains. The patient needs to find a specialist, who often must look outside of the textbook descriptions of various conditions, and be willing to follow the patient until he / she feels comfortable with making a diagnosis.

Collectively, we can help each other by sharing information and providing personal recommendations to other patients. Therefore, regardless of where you live, by recommending a specialist that you have found to be patient friendly, you may be able to help a fellow patient in your area, who has not been able to find a patient friendly specialist. You may offer a recommendation directly through this blog by submitting a comment.

Thank you.

Time To See A Specialist

2007-09-03T00:03:00.000-07:00

Although I have already detailed this information in My Story, including this information is important, because it leads into the reason why I chose to seek out a specialist, outside of my insurance.

The first time I went to see a neurologist, I had no idea what to expect. I did nothing in advance to prepare for the appointment. Additionally, I had no preconceptions about what I expected from a specialist. I believed that I would see the specialist, and after an examination, I would know what the cause of my symptoms were or be on the road to a diagnosis. I was wrong.

My primary care physician had referred me to a neurologist. I was being evaluated for Multiple Sclerosis. Rheumatoid conditions had already been ruled out. The rheumatologist I saw was very concerned that my symptoms were neurological in nature, and she wrote a very detailed report, which backed up her position. She was the second physician at this point who believed that I might be dealing with a neurological problem.

To make a long story short, I had the appointment with the neurologist. He did the typical neurological exam, and then he told me to follow up with him.

I returned to the neurologist, and I received quite a surprise when he rendered his opinion. This neurologist stated that my occipital headaches were caused by the fact that I was a female in my early thirties, and that it was common for women to begin having headaches at my age. He went on to say that my physical symptoms were being caused by severe depression. He told me that I was severely depressed, but that I did not realize it. I questioned him about the hard disc herniation that was touching my spinal cord, and he told me that it could not be causing my symptoms. (His opinion was based solely on a radiologist’s written report; he never requested to see the actual MRI.) I was then given a prescription for another anti-depressant. I left his office in tears.

To make matters worse, his report made me out to be just a depressed female, who had no “physical” problems. He even stated in his report that my cervical herniation was in no way responsible, advised against surgery, and he advised that I not be prescribed any type of narcotic pain relievers for pain. It appeared to me that this neurologist has made a presumption that I was the type to get “hooked” on narcotic pain relievers. I had made it clear to him during my appointments that I did not like to take medications, even those that you can buy over the counter. I was completely astounded.

Let us fast-forward two years. My symptoms had progressively worsened, and I was beginning to lose hope of ever having any answers. After a second neurologist that I saw through my insurance was unable to make any determinations, I finally convinced my primary care physician to send me to a neurosurgeon.

The neurosurgeon performed a thorough exam, and he then looked at the MRI films that I was told to bring with me. He pointed out the damage that was being done to my spinal cord on the MRI. The MRI films and a review of my symptoms convinced the neurosurgeon that my symptoms could be corrected by having a cervical fusion. He stated that my symptoms could absolutely be attributed to the hard disc herniation.

The surgery was a success, in my opinion. Unfortunately, I would soon realize, that although the surgery did correct the majority of my symptoms, new symptoms began to emerge within a few months after the surgery. These symptoms could not be attributed to spinal cord damage.

Multiple Sclerosis

I was at a standstill after my cervical fusion surgery. Because I began having new symptoms, I thought it was imperative to have Multiple Sclerosis completely ruled out. I had already been to the neurologists that were available through my insurance group. At this point, my primary care physician suggested that we take a “wait and see” approach. Unfortunately, I am not very patient, so I decided that it would be worthwhile to find a neurologist who specializes in Multiple Sclerosis, and to make an appointment as a private pay patient.

The Multiple Sclerosis Society referred me to a local specialist, and I was lucky enough to get a patient friendly physician. He requested further testing, which I was able to get the insurance to pay for. Based on all of the test results, as well as the exam, the neurologist’s opinion was that I did not have Multiple Sclerosis, but that I did have myelopathy from the cervival herniation.

I followed up with my primary care physician. He felt there was definitely something unrelated to the spine going on, but that the symptoms were not pronounced enough to determine a cause. Together, we decided that we would treat the symptoms as best we could. He believed that in time my symptoms would become more pronounced and clear, at which time we could pursue a diagnosis.

Parkinson’s Disease

Time moved forward two more years. Now, I not only had additional symptoms, but those symptoms were now with me every day, and it was becoming impossible to ignore them. My previous primary physician had retired, and I now had a new primary care physician, who is my current physician to this date.

Without a complete recap of what I have previously written, I was prescribed a trial of Sinemet, which had dramatic results. Because the Sinemet did improve my symptoms, I was able to get a referral to a Movement Disorder Specialist. Under normal circumstances, I would have been referred to one of the neurologists I had already seen while trying to rule out Multiple Sclerosis. Because Parkinson’s Disease has the distinction of being considered a movement disorder, I was able to insist that the insurance cover a visit to a Movement Disorder Specialist.

After waiting three months for the appointment date to arrive, I was sadly disappointed during that first visit. The Movement Disorder Specialist was not patient friendly, did not like to be questioned when he made statements that were contrary to what my husband and I had learned about Parkinson’s Disease through our research, and he refused to acknowledge that Sinemet was improving my symptoms. I decided not to see this specialist after my second visit.

I sought out another Movement Disorder Specialist as a private pay patient. I had hoped that I would get lucky like I had when I sought out the Multiple Sclerosis Specialist. Luck was not on my side. This person took offense that I was questioning the other specialist’s opinion, because she knew him to be a good physician. I was told that she did not know what was wrong, and she would have her office call me with information for another specialist. I never received any follow-up.

The next neurologist I saw was through my insurance. He was a new neurologist within my group insurance. He stated that he would be interested in having me as a patient. He believed that I had either Dopa-Responsive Dystonia or Young Onset Parkinson’s Disease. Unfortunately, after six months, he was honest enough to admit that he just did not have enough experience with movement disorders to render a diagnosis. I appreciated his honesty, but I was now faced with the fact that I had exhausted all of the neurologists within my insurance group. I belong to a small group, and all of the neurologists that were associated with this group had already seen me. I could have been referred back to any one of them, but there really was not much point in doing that.

I had no other choice but to search for a Movement Disorder Specialist outside of my insurance. I was so afraid that I would find another non-patient friendly physician, so I decided to get creative. I decided that I only wanted to see a physician who was truly interested in having me as a patient. There were a number of Movement Disorder Specialists in my area to choose from. I came up with a plan to narrow my options down, by using email.

I created a master email letter of introduction with two attachments, which detailed my symptom history, as well as an analysis of how each symptom related to either Dopa-Responsive Dystonia or Young Onset Parkinson’s Disease. I then searched the internet for Movement Disorder Specialists in my area. Once I determined which physicians, clinics, or larger hospitals I wanted to contact, I individually sent an email to each recipient. I sent out seven emails that morning. I was surprised when I received two responses by the end of the day.

One response came from the physician who founded a clinic that specializes in movement disorders, and the other response came from a larger teaching hospital. I did some research on the internet on each of the facilities, and I made the decision to make an appointment with the smaller clinic. A few of the specialists I had already seen were affiliated with larger institutions, and it appeared to me that it was more difficult to get personal attention, when there are so many patients walking through the door each day.

I called the clinic the next day to set an appointment and inquire about the cost per visit. I was to make an appointment with an associate, because the founder of the clinic was not taking new patients. I was surprised that not only was the cost reasonable, but I was able to get an appointment within two weeks. I had intended to email the physician to thank him and let him know that I had made an appointment with his associate at the clinic. Before I was able to do this, he had emailed me again to inquire if I had made an appointment. What astounded me was the fact that this physician not only took the time to read and respond to my original email, but cared enough to follow-up with me a second time. That depth of patient care is not very common. I was more convinced than before, that I had made the right choice on which specialist to see.

My husband and I went to this appointment fully prepared. Over the years, I had learned that providing as much information as possible was critical to helping a physician see the entire picture. I brought with me copies of all the records that I had that pertained to my current condition, as well as any records pertaining to my spinal problems. I also made a video of myself off Sinemet, so that the specialist could see how I am off medication.

The specialist turned out to be one of, if not the best specialist to date. During the appointment, the specialist looked through the entire stack of records I brought with me. She then performed a neurological exam. There were also multiple questions that she asked my husband and me. At the end of the appointment, I was told that she could rule out Dopa-Responsive Dystonia. She was not able to confirm Young Onset Parkinson’s Disease, but did diagnose Parkinsonism. The reason for not diagnosing Parkinson’s Disease was that my postural balance appeared to be worse than what would normally be expected in Parkinson’s Disease. This finding is more typical with Parkinson-Plus Disorders.

The specialist also requested that I have a sleep study done to rule out Narcolepsy and REM Behavior Sleep Disorder, because I have had symptoms of both for several years. I do know that sleep disorders are common in both Parkinson’s Disease and Parkinson’s Plus. For instance, narcolepsy has been associated with Parkinson’s Disease, and REM Behavior sleep disorder has been associated with Multiple System Atrophy, which is a Parkinson-Plus Disorder. Therefore, it makes sense entirely to have a sleep study done.

There is a reason that I wanted to include the rather detailed history of my experience with specialists, including those I was referred to through my insurance and those that I self-referred to as a private pay patient. Detailing the history allows me to pull together the three topics I wanted to address:

Why I chose to self-refer to a specialist as a private pay patient

How I was able to get tests I needed done and see a Movement Disorder Specialist, and have the insurance cover those costs

Persistence and knowing what you expect from a specialist

My Reasons for Seeing Specialists as a Private Pay Patient.

For both Multiple Sclerosis and Parkinson’s Disease, I was able to see neurologists through my insurance. Unfortunately, the results of these visits were less than satisfactory, including the one Movement Disorder Specialist I saw through my insurance. I decided that it was time to take the matter of my health in my own hands. I could have probably insisted and fought with my insurance, to make them cover additional visits to these specialists. The reason I chose not to take this path, was that it would have added a significant amount of additional time to the already vast amount of time I had spent looking for answers. I decided it was worth paying the money in order to save the time.

Although seeking a specialist outside my insurance did not guarantee that I would find a physician who was patient friendly, it did increase my odds. Because I was not limited by the constraints of insurance, I had the ability to choose the specialist from a much larger pool of physicians. I could choose a physician close to my residence, or I could choose a physician on the other side of the United States, if I so desired. Additionally, I could research a specialist, clinic, or associated hospital, prior to making that initial appointment.

I also see a Rheumatologist as a private pay patient. Originally, this Rheumatologist was associated with my insurance, so I did not have to search for her. I was so impressed with how thorough she was, as well as her level of care and concern, that I continued to see her as needed for my arthritis and bursitis, even though she is no longer a provider in my insurance group.

Once I decided to take charge of my medical care, including seeing specialists outside of my insurance, the diagnosis process speeded up dramatically. I do not believe that I would be at this stage of diagnosis, if I had not made the decision to look outside of my insurance. In summary, I will choose to see a specialist outside of my insurance, when it appears that there is extreme limitation with respect to the availability of knowledgeable specialists within my group insurance. I will always attempt to see a specialist within my group first. I now limit the amount of my time I am willing to invest in a specialist, who may not be the right person to be part of my “medical team”. Additionally, if I find a specialist, who is not associated with my insurance, I keep them as part of my team. If there is a specialist within my insurance group that should be part of my team, they are also included. In my case, the surgeons I have met with through my insurance are the only specialists within my insurance group, who remain as part of my team. My Rheumatologist and Movement Disorder Specialist are specialists I see as a Private Pay Patient. Whether or not the specialist is associated with my insurance, all are willing to work with my primary care physician, for the benefit of my health.

Testing, Specialists, and My Insurance

As you may recall, I sought out a specialist who specifically dealt with Multiple Sclerosis, when Multiple Sclerosis was a potential diagnosis. Although this specialist was not part of my insurance group, once he determined that additional testing was needed to rule out diagnosis, my insurance covered those additional tests. I have found that the insurance will cover tests that were not previously offered to a patient, if a specialist / physician recommends they be done. My presumption is that because these tests were determined to be necessary by a specialist in the field of Multiple Sclerosis, the insurance was not willing to take liability for not paying for the tests, especially had my true diagnosis ended up being Multiple Sclerosis. Consequently, had I stayed with the course of medical management that was being done through my insurance, I might not have been able to completely have Mulitple Sclerosis ruled out for several more years.

I have found that the above scenario holds true to this date. Although my specialists are not part of my insurance group, my primary care physician does not hesitate to request any test that these specialists feel is necessary. As long as the specialist is willing to work with and communicate with my primary care physician, there does not seem to be any issues with respect to testing. It is my personal belief that the medical team “spirit” and the open communication facilitate the willingness of my primary care physician to make the appropriate decisions with regard to my condition.

Although a Movement Disorder Specialist is not normally covered under my group insurance, I was able to utilize my insurance in order to see one. I believe that it became apparent to my primary care physician, after the positive results I had taking Sinemet, that there may have been prior specialists and primary care physicians who had incorrectly assumed that I was suffering from a mental health disorder. I believe that the prior physicians’ opinions that he received, were the reason that he also initially believed that my symptoms were mental health related. Once he became aware that mental health was not the problem, he immediately sent me to a local Movement Disorder Specialist. Additionally, my primary care physician became my biggest advocate with respect to helping me confirm a diagnosis.

I believe that I was able to see the Movement Disorder Specialist through my insurance for two reasons. Again, my personal opinion is that there could have very well been liability issues, if I had not received appropriate care in light of the potential diagnosis. Additionally, because Parkinson’s Disease and other related disorders, fall under a specific neurological class of conditions called movement disorders, a Movement Disorder Specialist is the most qualified to confirm a diagnosis. My insurance group did not have a Movement Disorder Specialist as a provider, but they did cover the visits.

Persistence / What I Expect From a Specialist

Each person needs to be able to define what he / she expects from a specialist or primary care physician. Over the years, due to my experiences with the medical community, I now have very firm expectations for those professionals who hold my health in their hands. My expectations are as follows:

1. Must be willing to take the appropriate amount of time during an appointment to address the reason for the visit, address any questions I have, and discuss any plans for testing, treatment, etc.

2. Must have good communications skills, as well as good listening skills. I want to be able to understand, in layman’s terms, what is being said about my medical condition. I also want to have the assurance that what I am saying is being taken seriously, being understood, and being used as a tool for diagnosis or treatment.

3. Must be willing to answer questions, even if those questions contradict his / her opinion. Example: If the physician makes a statement that is contrary to something I have read through research, I want to have the ability to discuss the difference between his / her opinion and the information I have found. Essentially, he / she must be able to acknowledge and deal with me, as a patient, being educated as much as possible about my condition.

4. Must not immediately make a diagnosis based on depression, stress, age, gender, life circumstance, or for any other biased reason that cannot be ascertained without a mental health evaluation or hard evidence based on testing that can prove a physical condition / disease does not exist. I do not want a physician’s quick fix or best guess. I want an accurate diagnosis, to the best of his / her ability, based on facts.

5. Must exhibit a genuine interest in my health, including appropriate testing, medications, or any other type of treatment that needs to be rendered.

6. Must be willing to work as a team with my primary care physician and me, in order to insure that my medical treatments are the most appropriate for my condition.

7. Must be willing to be honest and say that he / she is not able to ascertain a diagnosis, either due to lack of experience, vague symptoms, or for any other reason. I have more respect for a physician who says they do not have the answers, than for a physician who gives a diagnosis that does not cover the symptoms I experience.

Persistence

Regardless of the chronic condition, a patient must be persistent when seeking a diagnosis. I came up against many brick walls throughout the last ten years. There were many times I felt like throwing in the towel, and felt like I should just sit back and wait for this condition to take over. Despite being told I was depressed, too young to have true spinal problems, too young to have Parkinson’s Disease, and numerous other false scenarios provided by specialists and primary care physicians over the years, I knew that if I did not persist in finding a diagnosis, no one else would.

There were brief periods where I did have to take a step back, in order to regroup and rethink the methods I was using to get the answers I sought. Within each short break, I would come up with new ideas and methods to try, in order to persuade the next specialist to take an interest and want to help me get to the final answer. These breaks, as well as some guidance from my husband, helped me learn, not only how to deal with physicians / specialists, but what I can do to better up my chances of finding an appropriate specialist.

What I have learned through the last ten years, and now put in to practice, is the nexus of why this blog exists. It is my hope that what I share may help someone else to save time, frustration, and tears, and additionally to help someone not to have to learn by trial and error. If you visit a specialist / physician who show no interest or appear incapable of empathy, then move on. I went through several specialists and primary care physicians, until I finally found just the right ones, who were as interested in my health as I am. I chose not to give up, and that persistence provided me with an education I will never forget, but also a great group of medical professionals who work with me as a team.

Finding A Patient Friendly Physician

2007-08-30T20:58:00.000-07:00

How many people have experienced this scenario or one similar to this?

You have just enrolled in an employer sponsored HMO medical plan. Your preferred primary care physician does not accept the new insurance, so you are forced to choose a new primary care physician. You pick a doctor at random from a list of physicians in your area. Once your coverage begins, you decide to make an appointment, because you have been having frequent headaches. You find out that there is a two-month wait for an appointment, so you make an appointment, because the headaches are getting worse.

After you wait the two months, you finally get to visit your new doctor. You arrive 30 minutes early as instructed, because being a new patient, you have paperwork to fill out. You then wait for an hour and fifteen minutes in the waiting room. Finally, your name is called by a nurse, who takes your vital signs. She then takes you into an exam room and tells you the doctor will be right in. After another 30 minutes of waiting in the exam room, the doctor finally comes in. He very quickly introduces himself and inquires about the reason for your visit. While you are explaining the reason for your visit, trying to give as much information as possible, he interrupts you before you are finished. He then states that you are experiencing stress related headaches, and he suggests that you reduce your stress levels, take an over the counter pain reliever as needed, and call to make a follow-up appointment in two months if the headaches are still occurring.

Before the doctor can leave the room, you try to explain that you have no additional stress at this time, and the over the counter medication is not covering the pain. The doctor discounts your explanation, and he repeats that he believes they are classic, stress related headaches. He then informs you that you can be under stress without even realizing it. The doctor refuses to prescribe a stronger pain reliever, but he does offer you an anti-depressant to “calm” your stress. You politely decline the anti-depressant, and you decide to go along with his first suggestion. Before you can ask any additional questions, the doctor thanks you and leaves the exam room. This entire visit lasted approximately five minutes, and you leave the office with the same treatment plan you had already been doing prior to the appointment.

Rather than take a wait and see approach, you decide that it might be quicker to change to another primary care physician through your insurance. Unfortunately, you now realize that you have a 50/50 chance of choosing a new physician that is just like the one you just saw. You really do not have any other option but to find a new physician, because you know that if your primary care physician is patient friendly, you are more likely to have your headaches addressed more thoroughly. You are also more likely to obtain a resolution for these headaches that have become such a disruption in your life.

This type of scenario occurs more often than it should. Imagine how much time is wasted, while you search for a new primary care physician who is patient friendly, and wait for that initial appointment. Depending on the circumstances, you might be looking at one to three more months until you are able to see the new primary care physician. In the interim, your symptoms continue to worsen and are affecting your quality of living.

Do you choose another primary care physician from a list of approved doctors at random? Or do you come up with a plan of action that might increase your odds of finding the right physician for your needs? I had to make this choice, and I came up with a plan.

The following are some of the methods that I have used to assist me when looking for a primary care physician or specialist. Although these methods are not a guarantee, I have found that putting them into practice does increase the odds in your favor.

Talk to friends and family - I have always believed that word of mouth is the best advertisement that money cannot buy. This was the first method that I put in to practice, and I found my first patient friendly physician. It only took one visit with the physician to realize that the reference I received from a friend led me to a physician that I was able to establish a strong doctor / patient relationship with. Not only was he an exceptional physician, but he was one of those rare physicians that gave you the amount of time necessary during your appointment, in order to deal with your medical issue. This physician never hesitated to order tests, and he never hesitated to refer me to a specialist. I remained with this physician until he retired from practice.

Talk to your current doctor – If you find yourself in a situation like I had, where your primary care physician is retiring, or will no longer be seeing patients for another reason, ask for advice on a replacement physician. My physician already had a replacement physician lined up. This was a benefit to me, because my retiring physician made sure that my new physician understood that I had a condition that was not yet diagnosed. On my first visit with my new primary care physician, he was already aware of who I was and had been advised of my medical history. This physician remains my primary care physician to this date. If your physician does not have his / her replacement lined up, ask whom he / she would recommend.

Look to the Internet – There are multiple free sites on the internet that will not only provide a list of physicians in your area, but many also include a rating for each physician. One such website is called “Find a Doctor”, and I will include a link to this site in the “Links” section. On this site, you can search for a primary care physician, specialist, or dentist. You can also see how other patients rate the physicians. Additionally, what I like about this site is that physicians list themselves on the site. They are reaching out to find new patients, which in my opinion, may indicate that they might have more time to deal with a patient’s issues, because they have not reached the point where they are continuously overbooked. Once you have selected a physician, you can then check to see if that physician accepts your insurance. Additionally, it is often wise to contact the physician’s office to make certain he / she is accepting new patients. If you have an HMO, you will need to contact them to let them know that you wish to change your primary care physician. Those with a PPO need only to make an appointment.

Look to Your Insurance Company – Most, if not all insurance companies, supply an online directory of covered physicians in their plans. Additionally, I know of at least one insurance company, that actually includes a rating system for physicians and hospitals.

Background Check – This is not as in depth as it may sound. I make it a practice to go to the California Medical Board’s website and look up any physician that I plan to see. The website will not only confirm that the physician you have selected is licensed to practice medicine, but it will also let you know if the physician has any disciplinary actions against him / her. I will include a link for this site in the “Links” Section.

Do a General Internet Search – Once you have selected a physician, perform an internet search using your favorite search engine. This is best done using the advanced search feature. Once the search is complete, the results might include medical articles published by the physician, information about professional associations, the physician’s website, etc. This type of information could be very relevant, especially if you are searching for a specialist who sub-specializes in a particular field of medicine, such as a Movement Disorder Specialist.

In my humble opinion, for those who are searching for a primary care physician, the best method to use is talking to friends and family. A primary care physician is a person with whom you are looking to establish a trusted relationship with. A reference from a patient, who already has that type of relationship with a physician, is a strong indicator that the physician is patient friendly.

When searching for a specialist, it does not seem as common to have a friend or family member who can provide a reference. If you are lucky enough to have a friend or family member who can provide a reference, that is still the preferred method. Otherwise, I have found that the best way to search is through the internet. Many specialists are not only listed on sites such as “Find a Doctor”, but many are also published and have professional affiliations, which can provide a wealth of knowledge with respect to their expertise. Unfortunately, expertise does not guarantee a physician will be patient friendly, so there is still a higher risk that a specialist may or may not be patient friendly.

For those people who have an HMO and are referred to a specialist by their primary care physician, I would still recommend finding out as much information as possible about the specialist. I have found that knowing as much as possible about a specialist, better prepares me for the appointment. Since I do not have control over which specialist I see, I feel more confident when I do at least know his / her background and expertise.

In a future post, I will address the subject of specialists a little more in depth. I will discuss why I chose to see specialists, outside of my insurance as a private pay patient, and the results of those visits. I will also address how I was able to see a Movement Disorder Specialist, using my insurance, because of the type of condition I have. Finally, the most important aspect I will address when trying to find the right specialist, is persistence. Being persistent, as well as firm about your expectations and requirements, are key factors in finding the primary care physician or specialist who you can build a trusting relationship with.

Physicians 50/50

2007-08-30T20:25:00.000-07:00

While trying to decide where to begin, I decided that it would be appropriate to address the variables I have encountered with physicians I have come in contact with since 1996. I decided to break down the list into three categories consisting of: primary doctors, surgeons, and specialists.

The specialists consist of three neurologists, four movement disorder specialists, and one rheumatologist. For obvious reasons, names of these physicians are not revealed.

On this list, I have included a few sub-categories of opinions and treatments rendered by doctors, based on my personal experiences. I have also included the number of physicians in each category that I would consider as indifferent / difficult to deal with or as concerned / patient friendly.

Additionally, for specialists only, I included the number of specialists that I was referred to by my HMO insurance, and the number of specialists that I self referred to, as well as paid cash to see. (This is for reference only, and the issue of self-referral will be addressed in a future writing.)

Number of Primary Care Physicians 5
Ordered x-rays only 2
Ordered no tests 1
Ordered Multiple Tests 2
Stated symptoms due to depression 4
Prescribed anti-depressants 3
Stated symptoms due to gender 2
Indifferent / difficult to deal with 3
Concerned / patient friendly 2

Number of Surgeons 3
Ordered Tests 3
Performed needed surgery 3
Concerned / patient friendly 3

Number of Specialists 8
Stated symptoms due to depression 1
Prescribed anti-depressants 1
Stated symptoms due to age / gender 1
Indifferent / difficult to deal with 4
Covered by insurance 3
Private Pay, Self-Referred 1
Concerned / patient friendly 4
Covered by insurance 2
Private Pay, Self-Referred 2

Although this list only represents my experiences with physicians, as I look at the numbers, they increase my understanding of why it was so difficult to find concerned / patient friendly physicians over the years. For example:

- Four out of five primary care physicians attributed physical symptoms to depression, and three of the five prescribed anti-depressants, after little or no testing.

- Surgeons ranked higher than any other physician did. Three out of three surgeons ordered needed testing and performed necessary surgeries with satisfactory outcomes.

- Four out of eight specialists were indifferent / difficult to deal with.

From this point on, I will only address primary care physicians and specialists. Based on my list, the surgeons I dealt with, not only were thorough, but also were concerned / patient friendly physicians. My theory is that, outside of emergencies, surgeons deal primarily with specific conditions that can be confirmed through testing, prior to any surgery taking place. More often than not, if a patient is referred to a surgeon, an existing condition has already established. Additional testing requested by a surgeon, in addition to the examination by the surgeon, confirms whether a surgery is necessary or not.

As I looked at the number of indifferent / difficult to deal with physicians and compared it to the number of concerned / patient friendly physicians, it dawned on me that there were almost equal numbers of each. Therefore, 50% of the physicians were indifferent / difficult to deal with, and 50% of physicians were concerned / patient friendly. Consequently, each time I saw a new physician, there was a 50/50 chance that physician would be someone I could establish a good relationship with. Of the five primary care physicians, there were only two that I established a long-term doctor / patient relationship with. I consider both to be exceptional physicians.

Like me, if you have an HMO, you do not have much choice with respect to the specialists you are referred to. The choice that you do have is to choose a primary care physician that is not only concerned / patient friendly, but also one who you have the ability to build a strong doctor / patient relationship with. This type of physician will be willing to listen, be more willing to request the appropriate testing, and will not hesitate to refer you to a specialist if needed. If your primary care physician appears not to be looking out for your best interest, contact your HMO and find a new primary care physician immediately. Your primary care physician is the key to your health, even if you are not experiencing symptoms of a chronic condition. Having a good relationship with your primary care physician can save time when trying to obtain a diagnosis.

Although I do not have personal experience with a PPO, it is my understanding that having a PPO enables you to see any affiliated physician of your choosing. If you choose to see a primary care physician, and he / she appears not to be looking out for your best interest, immediately find another physician. Again, it is my understanding that you have the option to self refer, even to a specialist, without having to contact your PPO. This availability will save time, which is so important to any patient who is seeking a diagnosis. If your situation is urgent, and you do have this option, seek out an appropriate specialist first, and replace your primary care physician afterward. Having a PPO does not mean you should give up finding a concerned / patient friendly primary care physician. It only means that you have more options when faced with a potentially urgent or chronic medical condition.

If you have spent a significant amount of time searching for a diagnosis for your symptoms, and you have experienced difficulties, sit down and make a list of the physicians you have met with and what the results of your visits were. If you find that you also are having difficulty finding concerned / patient friendly physicians, you now recognize that finding the right physician needs to be the primary goal that will enable you to move forward.

The bottom line is that we need to increase our odds of finding physicians who we can have a good doctor / patient relationship with. In my next post, I will offer some tips that I found useful, that may be of assistance to patients who are searching for a new primary care physician or a specialist. These suggestions can be applied to patients who have either an HMO or a PPO.

My Story - Part One 1992-2003

2007-08-28T23:44:00.000-07:00

The first time I had a problem with my spine was in 1992 while I was pregnant with my son. I had been lying on the couch, and when I tried to get up from the couch my back went out. I ended up crawling on the floor for a few minutes until I felt safe enough to pull myself up to a standing position using a piece of furniture for help. There was not any pain, and once I was standing everything seemed normal again.

Although there were a few other times that my back went out briefly, it was in 1996 that I actually experienced any pain. I had bent over to pick something up off the floor, and I felt a stab of pain in my lower back that radiated into my left leg. For approximately three weeks, my lower back had excruciating pain along with the radiating leg pain.

It was not until late 1996 that I first sought medical treatment. After a few more times of my back hurting with the accompanying leg pain, I went to my primary doctor. Additionally I had left hip pain and a crunching sound that had developed. He initially did an x-ray of my hip for arthritis, but not of my spine, because he stated that he thought I only had a pulled muscle or that I was just under stress, so he gave me a prescription for Naprosyn. The x-ray of the hip was negative for arthritis, so he said that the pain was probably because I smoked or I was probably under stress. On about the third visit to this doctor for the same issues I asked if there were any other tests that could be done to try to find the underlying cause of the pain. He said that the only other test was an MRI and he would not order it, because he did not think it was necessary. Again, he reiterated that I was probably just stressed, needed to quit smoking, and that possibly I was suffering from depression. He stated that people my age did not have true back problems. I was 27 years old at the time. I decided that I was not going to return to a doctor about these issues.

Now we will fast forward to 1999 - 2000. I had a new primary doctor who acknowledged my back and hip pain, but again this one would not do any further testing due to my age. He, like the other doctor, suggested that I was either stressed or depressed and prescribed an anti-depressant. I knew I was not depressed, but I told him I would try it anyway. Needless to say that after a few months I told him I was not going to take it anymore, because it put me in a fog. He prescribed another one, to see if it would help. This one had the same result.

About the same time, I began having occipital headaches, which ran from my neck through the back of my head. I also began having blurred vision, which appeared to coincide with the headaches. Additionally, I began having some sort of pain under my right rib cage that would sometimes last for minutes or sometimes for days. This pain felt very muscular in nature, almost as if the upper abdominal muscles were tight from doing 1000 sit-ups. I had to go into his office a few times to get a shot to relieve the headaches. On the final visit for the headaches, my regular doctor was not available, so I saw another doctor at the office. He noted that I had been in several times for the headaches, so he decided to do a neurological exam. Based on that exam he suggested that he saw findings equivalent to early Multiple Sclerosis and that I needed to be followed up by my primary for a referral to a Neurologist. Additionally, he ordered an ultrasound to check for gallstones, which came up negative. When I went back to my primary doctor, he stated that he was not very interested in testing for Multiple Sclerosis, since there is not anything that can be done about it anyway with respect to treatment. I immediately began looking for a new doctor.

My new doctor turned out to be wonderful, although he did ask me to try the
anti-depressant route as the others had. Since he was willing to begin testing for physical problems as well, I went along with trying the anti-depressants. Within three months, he agreed that depression was not the issue, and I discontinued the anti-depressants, except for taking a small dosage of Amytriptelene for leg pain, which I was now having. He was able to rule out everything that he could through blood tests. He noted that I had winging of my right scapula and that my right shoulder was much lower than the left. Scoliosis was not an issue, and my leg lengths were equal. A Rheumatologist ruled out Fibromyalgia, but she was very concerned that I had bilateral leg weakness and pain. I had an MRI of the brain, which was normal. The MRI of the cervical spine noted a hard disc herniation at the C4-5 level that was “touching” the spinal cord. My lower spine showed disc herniations at L4-5, L5-S1, and other various signs of degeneration throughout the entire lumbar spine.

I was referred to a neurologist for assessment of Multiple Sclerosis. After spending approximately 30 minutes with me on the first visit and 15 minutes the second visit, he announced that he thought that I was just severely depressed and did not realize it. He said that the cervical herniation had nothing to do with my problems, although he never actually reviewed the MRI film. Additionally, he stated that my headaches were probably stress related and that many women in their early thirties begin having headaches due to hormone fluctuations. He tried prescribing another anti-depressant, and I told him I would not take it.

I was referred to another neurologist through my insurance, but he stated that he did not have any answers. I temporarily stopped trying to get any answers until after an incident that scared me half to death. I had an incident where all of a sudden I got extremely dizzy with vertigo and collapsed. The paramedics came and determined that I had not had a stroke. My ex-husband took me to urgent care the next morning. I was still unable to sit up or stand. It was determined again that I had not had a stroke. I was told that I probably had an inner ear problem, but there were not any tests to determine that. I was sent home. I was able to walk by the following day, but walked off-balance, looked like a drunk, for about three weeks. From that time on, I would continue to have vertigo and dizzy spells to a much lesser degree. I also began experiencing walking difficulties. It felt like my legs would get heavier and heavier the longer distance I walked, until it was too much of an effort to move anymore. They also began to give out, and I am very lucky that I was always able to grab onto something in order to prevent falling.

In 2001 I decided to see a Neurologist outside of my insurance to finally rule out Multiple Sclerosis. I contacted the Multiple Sclerosis Society who referred me to a doctor who specialized in Multiple Sclerosis. Although he did not believe that my problems were associated with MS, he did contact my primary doctor and let him know that they needed to finish testing for MS in order to completely rule it out. Therefore, my insurance did pay for an MRI of the thoracic spine, another MRI of my brain, evoked potentials, and a lumbar puncture. All tests came back normal, so MS was finally ruled out. Since there were findings during my neuro exam that he performed, he diagnosed myelopathy.

My primary doctor was hesitant to send me to a Neurosurgeon, because the first Neurologist that he had sent me to specifically stated that my problems were “not” due to my spine. Remember, he never physically saw the MRI and was only going off the radiologist’s report. Therefore, I spent several months taking painkillers, muscle relaxers, and going through physical therapy. Finally, the physical therapist said that he could not help me anymore and would let my primary doctor know. My legs had gotten very weak by this point, and physical therapy was not going to fix that problem.

I was finally sent to a Neurosurgeon in June of 2003. I was told to bring copies of my MRI. The surgeon examined me and looked at the films. He then pointed out to me where the hard disc was actually damaging the spinal cord at the C4-5 level. This was evident by a color change from black, which was how the rest of the spinal cord appeared, to white at the point where the damage was being done. He immediately began setting me up for surgery. My doctor was still hesitant about having me undergo surgery and only agreed after he spoke directly with the surgeon.

I had the surgery in August 2003. After the surgery I no longer had headaches, my legs did not feel heavy, the vertigo abated, and within about a year my leg strength appeared to be near normal. In hindsight, the only real issues that remained were the muscular lower rib cage pain, leg pain, and slowed walking. Because of the slowed walking, I believe I confused later specialists, because I never differentiated between the walking problems prior to surgery and after the surgery. I just used the term, “same walking problems” which was not accurate. It was within 6 months post surgery that the remaining problems and new emerging symptoms would set me on a new quest for answers.

My Story - Part Two 2003-Present

2007-08-28T23:43:00.001-07:00

Approximately six months after my cervical spinal surgery I saw my primary doctor to let him know that I still had pain in my legs, and I was still having issues with walking. My walking was slow at times. A short time before this appointment I had noticed that my right arm was not moving while I was walking. I also began having “episodes”. There were two types of episodes. One type was the sudden need to sleep, regardless of what time of day it was. Sometimes, especially if I was at work, I would try to fight off the need to sleep, which sometimes worked after great effort. If I was at work and could not fight it off, I would close and lock my office door and lay my head down on my desk. At home, I would just go to sleep. Sometimes I would sleep for fifteen minutes, and other times up to two hours. The other type of episode consisted of my eyes getting heavy and needing to close without actually sleeping. During these episodes, my speech would slow down, and it would feel like my body was in shutdown mode. These lasted anywhere from five minutes to up to thirty minutes. I also had increasing daytime fatigue. My primary doctor stated that he knew that the surgery was not going to fix the problems. I reminded him that the majority of the issues were fixed, and that most of these current symptoms were new. At this point, we decided to try Neurontin for the leg pain and monitor the rest of the symptoms.

In 2004, I began having speech problems, which initially manifested only during times of fatigue, stress or anger. It began as stuttering, not being able to speak the word I was thinking of, trying to remember the right word, and low speech volume. I began to have creepy crawly sensations in my legs when I would lie down to sleep as well as cramping in my feet and calves. It was also during this time that my ex-husband would state that I never smiled anymore. Please note that all of the symptoms, except for the loss of right arm swing and fatigue, were intermittent and would come and go in random fashion for various lengths of time usually during times of fatigue, stress or anger.

During this time my primary doctor retired, and my current primary doctor took over his practice. Because I had a long medical history, I wrote him a letter of introduction outlining all of my pre-surgery and current symptoms. This letter would prove to save my hide later. When I met my new primary for the first time, he stated that my previous doctor had told him that I was a “special case”. My retired primary always told me that along with my spinal problems, he believed another unrelated condition existed that would become more evident with time. The reason for the first visit with my new primary was because I thought that I had herniated another cervical disc. Immediately my new primary stated that it was probably a pinched nerve, prescribed Prednisone, and told me to come back in 30 days if I was still having problems. Thirty days later, I was back in his office. He agreed to order an MRI, and it absolutely showed a new herniated disc at the C5-6 level. He referred me to the Neurosurgeon, and at that visit, we agreed to hold off on surgery to see if it would improve on its own. The acute stage ended, but I was left with livable neck pain, occasional occipital headaches, and pain that radiated down my arm to my thumb and first finger. I still have not had that surgery, but I know I am getting closer to having no choice but to have it fixed.

In 2005, I had left knee arthroscopic surgery for Plica Syndrome and Arthritis. I also began having constant, severe lower back pain with radiation into the left leg. Additionally I began having new symptoms such as nighttime sweating, urinary frequency and hesitation, constipation, insomnia, and sporadic tremors. All of the other symptoms were still intermittent, except for right arm swing and fatigue, but they did seem to come more often. I did not pursue any answers at this point, because the pain caused by my back was becoming more than I could handle. It took nine months from the onset of the consistent back pain to finally having the fusions to fix the problems, during which time I continued to work while finally escalating to oral morphine to deal with the pain. I had the fusions of L4-5, L5-S1 in December 2005, four days before Christmas. I came through the surgery fine, but I had complications with my bowels 24 hours post surgery while still in the hospital. My bowels completely stopped working, so the morphine drip was discontinued, and the only thing they allowed me to take was Darvocet. My bowels did begin to work again a few days later (Christmas Eve), so I was released by my surgeon Christmas Night. (I now wonder if the bowels shut down because of the surgery or from the underlying undiagnosed Parkinsonism condition, which all can affect the gastrointestinal system)

This surgery also fixed the issues it was intended to fix. I spent through mid February 2006 recovering and returned to work. In April 2006, all my symptoms began showing up more frequently. By July 2006, I no longer could walk at normal speed, and my speech was very low, slow, and hesitant. I was much less animated when speaking which was evidenced by lack of associated hand gestures and movements while speaking. Additionally, my husband said that my face had no expression, and I rarely blinked. He mentioned Parkinson’s Disease at this time, because his mother had it before she died, and he recognized the symptoms. I told him he was crazy. The worse part was that people at work began to take notice. My standard answer to their questions was that I was just tired. I waited a full month before I would make an appointment to see my primary. I was hoping that everything would go away as it had in the past. The symptoms stayed. (Note: In June 2006, I had right arthroscopic knee surgery for Plica Syndrome and arthritis.)

In August 2006, I saw my primary doctor. He was shocked by what he saw. He immediately stated that he thought I must be bi-polar. Thank goodness my husband was with me, because I would not have been able to communicate well enough in that condition to deter my doctor from going down the mental health path. My husband told him that there was no way that I was bi-polar, depressed, or had any other mental illness. He explained that we had worked together for five years, and that at no time had he ever witnessed any signs or symptoms of mental health conditions. Then he told my doctor his opinion about Parkinson’s. He convinced my primary doctor to allow me to try the Sinemet, because it would not hurt me if I did not need it. He finally agreed. Within 30-40 minutes of taking that first pill, I was a new person. What bothered me though was that my doctor stated that I had never mentioned any of these symptoms before. During the visit, I did not put two and two together. Later that day I remembered the letter of introduction I had sent him back in 2004. I wrote a new letter detailing how well the Sinemet was working and that I expected to be referred to a Movement Disorder Specialist. I faxed this letter along with a copy of the 2004 letter to his office. Within an hour, I received a call from my doctor agreeing to send me to a Movement Disorder Specialist. From this point on the relationship between my primary doctor and I became a prime example of what the optimal doctor - patient relationship should be. It was at this time we began working as a team to find the answers I had been looking for with respect to my medical condition.

It took three months to get in to see the first Movement Disorder Specialist. He was not worth the wait. He diagnosed Restless Leg Syndrome and prescribed Requip to be taken before bed. He had me come back for a second appointment to evaluate me off Sinemet. At the second appointment, he had residents with him that he was instructing and seemed to pay more attention to them than to my decreased physical abilities. My husband was very angry. The Movement Disorder Specialist also appeared to take offense when we questioned him about statements he was making that were contrary to the information we had learned on our own about Parkinson’s Disease. One example of such false statements was when he stated that I was too young for Parkinson’s Disease, which is definitely not a factual statement. He even put this statement in his official write-up that was sent to my doctor. This Movement Disorder Specialist decided to send me out for an EMG to rule out a condition that had already been ruled out. (Myasthenia Gravis) We went to have the EMG, but we never returned to this Movement Disorder Specialist. During this time, I had arranged to concurrently see another Movement Disorder Specialist, which I paid for outside of my insurance. She was polite until she found out I was seeking a second opinion. When I named the first Movement Disorder Specialist, she stated that he was a great doctor, and she could not understand why we would question his opinion. She then said that she did not know what was wrong and could not help me. She promised to have her office call with information about UCLA, so that I could try there, but I never received any further follow-up.

In November of 2006, I decided that a Psychologist should evaluate me in order to establish that my symptoms were physical in nature rather than mental. By doing this, I would be able to absolutely refute any further opinions that might be given by other doctors that my physical symptoms were related to mental health issues. I saw this Psychologist weekly for almost three months. Additionally, he had me evaluated by the facility’s Psychiatrist. The timing was right, because he was able to see me both on medication and off medication, because I went off the medication in December. In mid-January, he decided that unless I really needed to talk to someone or I needed to talk to him in the future once I received a diagnosis; there was not any need for me to continue to see him. In his opinion, I had mild depression caused by the undiagnosed medical condition, but this depression was not the cause of the physical symptoms of the medical condition. He also diagnosed mild obsessive-compulsive disorder, which I already knew I had, that was not in need of treatment. Now, whenever I see a new doctor or one I currently see, I let them know about this evaluation and provide them with the contact information for the Psychologist should they like to confirm what I tell them. Not one doctor has requested any written information from the Psychologist, but it is a great comfort for me to know that the information is there if it is needed.

I decided to go off the Sinemet in December of 2006 to try to better my chances of getting a diagnosis. I went out on temporary disability. By the time I went back on the Sinemet at the end of January 2007, it was becoming apparent that I might not be able to return to work. I finally made the decision not to return to work in March of 2007, and my primary doctor supported that decision.

I asked my primary if I could see the neurologist who performed the EMG. Although he was not a Movement Disorder Specialist, he recognized immediately that I did not have Myasthenia Gravis, which is the condition that the first Movement Disorder Specialist was having me tested for. He said he thought I could be dealing with either Dopa-Responsive Dystonia or Young Onset Parkinson’s. He seemed excited about having me as a patient. I saw him three times, but on the third visit in June 2007, he stated that he just did not have enough experience to diagnose the condition

I had added an Agonist to my medication schedule in May 2007 due to end of dose return of symptoms and breakthrough symptoms, so during that final visit I asked if he could assist me with increasing the Agonist to the maximum level, so that I might be able to avoid having to increase the Sinemet. I did not want to increase the Sinemet, just in case I was really dealing with Parkinson’s Disease. He agreed, and he also added a Sinemet CR at night to help with symptom control at night. It is now clear that within the first year of taking the Sinemet, its benefits were not as strong as when I initially began taking it. To this date, even with adding the Mirapex, I still have breakthrough symptoms as well as end of dose return of symptoms. The Mirapex helped me to lengthen my dosages of Sinemet from every two and a half hours to every three hours, fifteen minutes. I will probably start taking it every three hours, because of the end of dose return of symptoms. It also prevented the symptoms from returning as quickly as they did when I was only taking Sinemet. The decline in physical ability at the end of a dose, or on those occasions where I forget to take the next dose, is much slower.

I came up with a creative method to find a new Movement Disorder Specialist. I sent out a mass email to approximately seven doctors, clinics, and large hospitals. This email consisted of a letter of introduction and two attachments, which outlined my symptoms, plus how these symptoms fit in with respect to Parkinson’s Disease and Dopa-Responsive Dystonia. This mass email method allowed me to see who was interested in having me as a patient based off response to this email. I surmised that if someone took the time to not only read the email and the attachments, but also responded positively to that email, then that was the doctor / facility that I wanted to be involved with. This method paid off, and a specialist who showed great interest in helping me find a diagnosis contacted me.

I met with the new Movement Disorder Specialist in July 2007, and that is when Parkinson’s-Plus came into the mix, specifically because of postural instability. The Dopa-Responsive Dystonia was ruled out completely. The Movement Disorder Specialist diagnosed Parkinsonism, and I will see her every three months, so that she can follow my progress. Therefore, here I am today trying to learn as much as I can about the PD-Plus conditions and waiting to see if I continue to progress as quickly as I have in this past year. The Movement Disorder Specialist requested that I have a sleep study done to rule out or confirm Narcolepsy and REM Behavior Sleep Disorder. I am presuming that she is also waiting to see if the new medication regimen that was established in June 2007 continues to benefit me or if the benefits decline within a short period. The latter would be a greater indication of a PD-Plus condition rather than Parkinson’s Disease.

Aside from all of the symptoms listed, I have had very sporadic periods of blood pressure issues, which looking back, actually predate the motor symptoms by several years. I now have a monitor, so that I can take my blood pressure if I begin to feel dizzy. I have found that I do have significant drops in blood pressure at times, which I will address at my next appointment. Prior to medication, this symptom existed, but I never paid much attention to it, because that symptom alone was not a major concern.

Additionally, when my medications wear off a deep, morose depressive mood comes upon me that does not exist when medications are working, nor did it exist prior to the onset of any symptoms. I also find that I tend to be more emotional than I have ever been in my life. My “normal” personality was to internalize whatever was bothering me, keep it to myself, find a solution, and deal with the issue. More often than not, now I am more likely to allow emotions to reach the surface and cry more freely.

More recently, I have noticed that I startle very easily. Loud noises, quick movements, or someone coming up quietly behind me, can cause me to react physically and verbally. One example just happened two days ago. I was sitting at the computer, and my husband made a noise from behind a nearby open door that leads to the backyard. The unexpected noise caused me to jerk my head to the left and gasp. As a result of turning my head so violently, I think I may have either pinched a nerve or herniated another cervical disc, because I have pain running down my left arm, new neck pain, and my two outer fingers on the left hand have been semi-numb since this occurred. Needless to say, my husband feels terrible.

So far, I am able to still drive, although I no longer drive during the night, because I am dangerous at night. I have a difficult time with adjusting to different lighting degrees that occur at night and have extreme difficulty distinguishing distance at night. If abnormal weather such as rain or fog is involved, it is completely impossible to drive at night. Normally I will only drive locally, although I feel comfortable driving longer distances, but only when my medications are at their optimum level. Losing my ability to drive completely is one of my biggest concerns.

Since July of 2006, I have lost over 30 pounds. Although I was never considered overweight, now I am considered underweight by a few pounds. I have recently changed the way I eat and have added additional calories in order to try to gain a few pounds. It seems like I will gain a few then lose a few with this new method of eating. I am just wondering if the difficulty in gaining weight can be attributed to extra calorie usage during the medication “off” times. I would imagine that more calories are burned if you have to fight your body in order to walk, speak, etc. Another possibility could be a slowed digestive track, because I often have to force myself to eat, because I often feel full several hours after a previous meal. The only benefit to this problem is that I am eating some favorite junk food right now that I have not had in my diet for years.

Finally, medication effectiveness seems to be tied to many factors. The more physical activity I do, which isn’t ever much more than sitting in my garden pulling weeds or planting new flowers, affects how well the Sinemet works. On the rare occasions that I may do something excessively physical, such as walking for extended periods, too much housework in one day, etc., I may have to take an additional Sinemet to counteract the affected dose. Lack of sleep or extreme fatigue can make the Sinemet seem less effective. I limit my protein to the evenings, because the protein definitely affects the Sinemet. I have read that these variations in medication effectiveness are normal, but they are disconcerting nonetheless.

Upon doing multiple hours of research, I have subsequently learned that sleep disorders are common in both Parkinson’s Disease and Parkinson-Plus Disorders and can predate symptom onset by several years. Narcolepsy, REM Behavior Sleep Disorder, and Insomnia are the three main disorders associated with these conditions. I have had symptoms of Narcolepsy and REM Behavior Sleep Disorder for many years, and I have developed Insomnia within the last 3 years. It will be interesting to see what the results are from the Sleep Study Test.

Beyond any of the symptoms, the speech issues bother me the most. I enjoy having conversations with people, and I am most frustrated when the speech issues interfere with communication.