Thursday, August 14, 2008

PD + Insomnia + Stress = Disaster

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.

Saturday, July 26, 2008

Another Spinal Surgery Complete

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.

Monday, March 31, 2008

Pesticides and Parkinson’s disease

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

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.

Tuesday, March 18, 2008

Definition of a Patient: Customer

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

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.

Monday, March 17, 2008

Uplifting Events This Week

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:

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.

Wednesday, March 12, 2008

An Update On My Letter Writing Campaign

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.

Thursday, February 14, 2008

Two Great New Blogs

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.

Wednesday, February 6, 2008

Are There Any Decent Specialists Out There?

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.

Sunday, January 27, 2008

Fluctuations In Parkinson’s Disease

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.

Tuesday, January 1, 2008

Reflections of 2007

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.