Friday, September 28, 2007

The Emotional Side of a Chronic Illness – Part 2

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.

Thursday, September 27, 2007

The Emotional Side of a Chronic Illness – Part 1


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.

Tuesday, September 25, 2007

Communicating With Your Physicians - Part 2

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.


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.

Tuesday, September 18, 2007

Communicating With Your Physicians - Part 1

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.

Thursday, September 13, 2007

Internet Education During Diagnosis Process

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.

Wednesday, September 12, 2007

Personal Medical Journal September & October 2007

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.

Sunday, September 9, 2007

Internet Support During The Diagnosis Process

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.

Thursday, September 6, 2007

Mental Health - A Proactive Approach

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.

Tuesday, September 4, 2007

Turning Anger Into Something Positive

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.

Monday, September 3, 2007

Recommend A Specialist

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

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.


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.