Fluctuations In Parkinson’s Disease

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

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

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

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

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

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

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

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

The Sleep Study

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

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

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

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

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

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

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

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

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


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


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

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

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

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

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

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


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

The Importance of Keeping a Health Journal

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

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

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

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

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

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

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

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

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

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

1. Date of journal entry

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

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

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

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

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

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

1976 – Tonsillectomy and Adenoid removal at 7 years old

1984 – Walking Pneumonia at 15 years old

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

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

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

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

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

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

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.

My Story - Part One 1992-2003

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

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

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

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

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

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

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

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

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

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

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

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

My Story - Part Two 2003-Present

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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