PD + Insomnia + Stress = Disaster

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.