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.
Showing posts with label PD-Plus. Show all posts
Showing posts with label PD-Plus. Show all posts
Thursday, October 18, 2007
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.
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.
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