Pesticides and Parkinson’s disease

It seems like lately there have been numerous articles about the possible connection of pesticides and Parkinson’s disease. Additionally, there have been numerous articles on the role that genetics plays with respect to Parkinson’s disease. My husband is always saying that I have a “why” personality. What he means is that I do not just want to know that I have a diagnosis of PD, but I also want to know why I have PD. This “why” personality does not just pertain to PD, but it applies to any circumstance that occurs in my life. I have always wanted to know why something happens, or the nexus of why something occurs. It is often difficult for me to accept that no reason exists for something that occurs in life.

Keeping all of this in mind, I started recounting my years as a child. I tried to recall if there were any circumstances that could have occurred that may have been part of the reason that I developed PD. I thought I would look at the pesticide issue first, because the genetic portion is much more in depth.

As a child, I do recall that we spent a lot of time with my aunt and uncle and another aunt and uncle who lived in a community which had a potential problem with the drinking water. In fact, whenever we stayed or visited with either family, we always drank bottled water. Later, both families would eventually be part of a class action lawsuit and receive a monetary judgment as a result of the lawsuit. There was definitely contamination of the water due to a biohazard dumpsite.

Because we spent a great deal of time with both families, I began to wonder if drinking the bottled water was enough to insure that potential harm did not occur as a result of the tainted water. There were many times that I spent the night or even longer with one of the families. My cousins and I would run through the sprinklers or sit in a children’s pool that was filled with this water. We showered or bathed with this water. Could this tainted water, which did include pesticides, have gotten into my system and had an impact? It is a very interesting question, which I am uncertain there is an answer for. Additionally, I have never cared much for bottled water, so I know there were times that I did drink the tap water. It did not taste funny as I recall. I also do not recall how often I might have drunk from the tap despite the warnings from my aunts and uncles.

We used to have many pets when I was a child. When you have multiple pets, the likelihood of fleas is high. As adults we would recount with laughter how our house became so infested with fleas one year, that you could actually see the fleas jumping out of the carpet or couch as we sat on the couch watching television. After my dad had a nightmare that fleas were biting his ears, resulting in him falling out of bed onto the floor in the middle of the night, my dad took measures to “get rid of the fleas”. We were allowed to keep one dog and two cats. The rest of the animals were given away to various friends.

Reducing the number of pets in our household was only the first measure that was taken to rid the house of fleas. The final measure that my dad took was to spray a commercial grade pesticide throughout the house. I do not know what chemical was used, but it did take care of the flea infestation. I do recall that this chemical was sprayed on all of the carpeting, couches, and our beds. Anything that was made of fabric was sprayed, almost to the point of saturation. I also believe that he re-sprayed everything a few weeks later, just to be sure that there were absolutely no more fleas.

Thinking about it now, maybe the funny events surrounding the flea infestation were not as funny as we once believed. I now wonder if this type of direct and abundant use of a pesticide inside of our house could have been another contributing factor. Additionally, I was very much a tomboy as a child, so it was very common for me to roll around on grass during games of tackle football with the neighborhood kids. It is difficult to say what types of pesticides that neighbors may have used in their yards or the city may have used in the park across the street from our house.

Although exposure to pesticides may in fact contribute to the future development of PD, I tend to believe that a person may need to be predisposed genetically for this to occur. I believe that if PD had only once source or reason for its development, then we would already have far more answers than we do now and be closer to a cure.

I have done some very extensive research into various genes that are supposedly connected to the development of Parkinson’s disease as well as other various conditions. If I am interpreting this information correctly, then Parkinson’s disease may have types that are purely genetic, but may also have types that are a combination of genetics and outside environmental factors.

In my next post I will write about the genetic research I did as it relates to various conditions in my family’s history. I found some very interesting parallels between family history and Parkinson’s disease. I would find it additionally interesting to see if other people find similar parallels within their own family history, especially those of us who appear to be the first member of a family to be diagnosed with PD. This particular post will be difficult to write, because of the scientific nature of the subject. God willing, I will be able to explain the research I did in an easy to understand format.

Are There Any Decent Specialists Out There?

Since my last post I have become enlightened in several ways, so this post will touch on a few different topics.

After the holidays I was hit with a change in my physical symptoms which included excessive fatigue, an increase in daytime sleepiness, drops in my blood pressure, and just a general feeling of lethargy. At first I thought it was due to over-exertion during the holidays. I have had plenty of down time since then, and these changes in symptoms have only improved partially. Adding more salt to my diet has helped with my blood pressure immensely, but the other symptoms are not as improved as I would have hoped. I am now wondering if this is just another new phase or change due to PD that has entered my life that I will just have to adjust to. I will be discussing this with my MDS next month.

I received a comment from Diane on my previous post, and I have exchanged a few emails with her. Diane has a diagnosis of Multiple Sclerosis, and she has a great site that I have added a link to.

Although I write primarily about Parkinson related diseases and dealing with the medical community, these recent emails with Diane reminded me that my main purpose for starting this blog, was to try to help others who are struggling with the medical community, regardless of the type of chronic illness. I was further reminded that in the very beginning of my own search for a diagnosis, I was told that there was a possibility that I might have Multiple Sclerosis, so I have done quite a bit of research in the past on that disease. From what I have read, it is not uncommon for a patient with PD, especially females, to originally be told they may possibly have MS. Additionally, from my own experience, it took approximately three years to completely rule out MS.

Multiple Sclerosis and Parkinson’s Disease are both neurological conditions. I know that in theory, a Movement Disorder Specialist deals with the diagnosis and treatment of PD, and a Neurologist who specializes in Multiple Sclerosis deals with the diagnosis and treatment of MS. I have been to both types of specialists. The neurologist that was originally recommended to me by the MS Society was wonderful, and he did finally rule out MS. On the flip side, I had been examined by a Movement Disorder Specialist who was highly recommended in the Parkinson’s community, and I was told that I was too young to have PD. My own GP and a general Neurologist did more for me during the last two years, than the multitude of specialists that I have come in contact with, not including my current Movement Disorder Specialist, who is awesome. In my experience, the “extra” training that a specialist receives for specific neurological conditions, does not guarantee that a specialist will give you an accurate diagnosis. Additionally, a patient may get lucky when they see a specialist that is referred by specific organizations, or they may be out of luck. I have experienced both scenarios.

So, I will now get to the point. I believe that the best referral for specialists, or any other type of doctor, comes directly from other patients. In earlier posts I mentioned that I had added a link section for specialists that other readers would highly recommend. I began that section by adding the link to the Parkinson’s and Movement Disorder Institute, which is where my Movement Disorder Specialist practices. This section is not limited to Movement Disorder Specialists or Parkinson’s Disease. If you have a general neurologist who diagnosed and treats your neurological condition, who you would highly recommend, then please let me know. If you have a neurologist who specializes in Multiple Sclerosis, but diagnosed and treats your non-MS neurological condition, then get that specialist on the list. My goal is to eventually have at least two neurological related specialists that come highly recommended by you, for each state. These are the specialists, who not only have the knowledge, but also have the desire, concern, and willingness to help both the diagnosed and yet to be diagnosed. These are the specialists that think out of the box, especially since many patients with neurological conditions do not initially fit neatly into a box of predetermined criteria for diagnosis.

Since I began blogging I have learned so much from all of the people I have come in contact with, through their stories and experiences. With each new story I read, I gain new knowledge and insight, not only about Parkinson’s Disease, but about the similar physical, mental and emotional struggles that neurological conditions in general have in common. I just want to say a big “thank you” to those I have met through your stories and to those who I have not met, whose stories I have yet to read. Together, we can all make a difference just by reaching out through our words and our knowledge that we try to share. We are a great support for those who already have a diagnosis, but may even be a greater support for those still seeking a diagnosis. I found this to be true during my diagnosis process. With that being said, let me say once again, if you have a great specialist, please let me know.

Reflections of 2007

I hope that 2008 is off to a great start for everyone. There have been so many new and wonderful people that I have met during the past year that either have a diagnosis of a form of Parkinsonism or are still struggling to obtain a diagnosis. My prayer for those who already have a diagnosis is that they have a doctor who continually works with them in order to maintain the best quality of life. For those still struggling for that illusive diagnosis, my prayer is that they will receive those long awaited for answers in 2008.

2007 was a revealing year in my life with respect to my health. After many years, I finally received a confirming diagnosis of Parkinson’s Disease. (Akinetic-Rigid sub-type) As many of you know, although Parkinson’s Disease is chronic and progressive, it was a relief to finally be able to put a name to the condition that has been treated through medication for almost one and a half years.

As I previously stated, 2007 brought many new people into my life. Had I not been aggressively searching for answers to my health, I would have not met these people who have blessed and enriched my life so much. The common tie between all of us is Parkinson’s Disease or another form of Parkinsonism.

Although I now have a wonderful doctor who has helped me to find the best medication balance, which allows me to have fewer breakthroughs; I did find that the rush of the holidays did have an affect on my disease. There were a few times when I let adrenaline kick in, and the affect on my physical condition paid the price. I now realize that I may have to adjust the Sinemet dosages in order to compensate for additional physical activity. There were two nights in particular that my body completely “crashed”, and my symptoms came on full force. This came as a surprise to me when it happened.

Christmas has always been my favorite time of year, and I have always enjoyed the physical portion involved with decorating, baking, cooking, shopping and entertaining. This year I discovered that I do not have the same abilities as I once had in order to celebrate the season in the same ways that I have always done. My husband and I came to the realization that we will need to make some adjustments in how we celebrate and prepare for Christmas in the future. This came as a disappointment to me, but I now understand that such adjustments for holidays are no different than the adjustments that I will continue to have to make throughout my life due to Parkinson’s Disease.

I am not one who normally makes New Year’s Resolutions. However, I have set some goals for 2008 that I hope to be able to accomplish. This blog is one of my top priorities for the coming year. Learning more about the Akinetic-Rigid subtype of Parkinson’s Disease is another priority. Additionally, now that I have a confirmed diagnosis, I finally have the confidence I need to write to those previous doctors that were so quick to dismiss my symptoms throughout the years. Just as those of us who have a form of Parkinsonism are able to help and educate one another about these diseases through our stories, I believe that doctors can learn something from their previous patients that may benefit other patients in the future.

I believe that 2008 is going to be a great year. For all of my many new friends, I want to personally thank you for your prayers, kindness and encouragement. If we all continue working together through our blogs, support groups, and internet support groups, the ability to reach out to more people with a form of Parkinsonism has endless possibilities. May God bless all of you in 2008.

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.

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.

The Emotional Side of a Chronic Illness – Part 1

Pre-Diagnosis

I thought it was time to write about something on a more personal level. The majority of my prior posts have focused on issues patients face when dealing with the medical community and methods that can alleviate some of those issues. Although my previous posts represent my purpose for creating this blog, I think it is important to share the issues I have personally faced with respect to the Parkinsonism diagnosis. Therefore, I decided to begin by writing about how Parkinsonism affects me emotionally now, as well as how it affected me emotionally prior to the diagnosis.

My true diagnosis journey to Parkinsonism began in late 2003. It was at this time that I became fully aware that some of my symptoms were not related to the herniated cervical disc, which had been surgically addressed by a fusion in August of 2003. Because the fusion had corrected the symptoms that were related to the herniated disc, I was better able to recognize that the symptoms that remained were due to a separate cause. Therefore, in order to draw a line in the sand, I now state that my Parkinsonism related symptoms began in late 2003.

For the first couple of years, I did not actively search out a cause for the existing symptoms, nor the additional symptoms that began to emerge. Since many of the symptoms were not consistently present, I was fully aware that seeing a specialist would not produce any results. My previous Primary Care Physician and I made the decision to monitor the symptoms until they were progressed enough that a cause could be determined. I often provided written communication to my physician as symptoms changed or new symptoms emerged. Emotionally, this period caused frustration more than anything else did. I was frustrated because I wanted answers, yet I fully understood why I had to be patient.

The intense search for a diagnosis began in August of 2006. By this time, my symptoms had progressed to the point that without appropriate treatment, my ability to function in all aspects of daily life would have been non-existent. My symptoms were not only consistent and present, but they had progressed to a very severe level. For the first time since my symptoms began, I was frightened. It was at this point that I realized that I was not dealing with a minor disease. I knew that whatever it was, it had the power to rob me of my ability to walk, speak, or do any type of activity that required normal speed of movement. My biggest fear was that whatever I was dealing with might not have a treatment or cure.

I previously posted on how Parkinson’s Disease came into the picture that August day that I tried Sinemet. Between that day until June of 2007, three different Neurologists evaluated me. Two were Movement Disorder Specialists, and the other was a regular Neurologist. Without going through all the details again, I will only briefly describe the roller coaster of emotions during this time.

Anger was a huge emotion that I experienced. I was not angry at the prospect of having PD. I was angry about how I was being treated by the two Movement Disorder Specialists. One made statements contrary to known information about PD, focused on conditions that do not benefit from Sinemet use, and discounted or did not answer questions that my husband and I would bring up. The other specialist blew me off, because I had dared to question the methods of the first specialist. Angry does not even describe the depth of emotion that these experiences caused.

Disappointment was prevalent throughout this process. My third Neurologist was a wonderful, caring physician. Unfortunately, after 6 months, he felt that he did not have the necessary experience needed to diagnose the condition. This contributed partially to my disappointment. The majority of my disappointment stemmed from the knowledge that I was losing a wonderful physician who I knew I was able to work with. Additionally, this event meant that I had to start over again with yet another specialist.

Frustration was a daily emotion, which had multiple contributing factors. During "wearing off" times or when I went off medication for medical evaluations, the return of motor symptoms was very frustrating. The inability to speak normally or to walk with a normal rate of speed and fluency was not only exhausting but also frustrating to the point that I often spent the day in solitude on the couch. Additionally, I felt like I had to be one step ahead and ready for battle when dealing with the specialists, which became a major trigger of frustration. I became more frustrated than ever before with not knowing my diagnosis and I felt that the specialists due to their methods, attitudes, lack of interest, etc., were wasting time. Finally, my biggest frustration was the inability to explain to other people how it feels when the symptoms are present. I never felt that anyone understood completely what I was feeling and trying to express.

During this period, the big “D” entered my life. Yes, whenever my symptoms would return I would be hit with an overwhelming feeling of depression. At first, this really frightened me, because it was a feeling I had never been exposed to before. Initially, I really did not understand that the feeling was in fact, depression. Of course, I began to do some research on the internet, and the information I found explained it all. It appears that when the dopamine levels in the brain are low, such as in between doses or when completely off medications, depression can manifest in the same manner that motor symptoms return. Depression is known as a non-motor symptom of Parkinson’s Disease. This appeared to be what was happening in my case. If my motor symptoms returned to a significant degree, depression would envelope me also. The next dose of Sinemet, which helps with controlling the motor symptoms, would also alleviate the depression. Therefore, I only had to deal with depression during those times when my dopamine levels were low, which I tried to prevent as much as possible.

Loss and mourning go hand in hand. This was the beginning of the sense of loss and mourning for those losses. The feeling of loss involved many factors, primarily the loss of my ability to maintain the fast-paced lifestyle I had always thrived on. I mourned the loss of my ability to work. In many ways, I felt as if I had completely lost the person I once was and had no idea how to deal with the person I was becoming. Additionally, the loss of complete independence and having to rely on other people for certain things was one of the greatest aspects of my former self that I mourned. I had been independent my entire life, and for the first time, I began to realize that my independence and self-reliance were now becoming a part of my past life.

I believe that loss and mourning are such strong emotions for someone dealing with a chronic illness, that often they become barriers to acceptance of the chronic condition, even if the chronic condition has not been firmly diagnosed. It was not until I was able to accept my various losses associated with my condition and get through my mourning of those losses, that I was finally able to envision a positive future, despite my physical health. Once this occurred I began searching out new interests to replace the activities that I was no longer able to do. This enabled me to wake up each morning with new purpose and helped me to realize that there were many things I could still do.

Finally, guilt was a heavy feeling that entered my life. Although my health condition was beyond my control, I began to feel guilty for the burden I felt I was becoming, in the lives of my family, especially my husband. I was no longer able to contribute as much financially as I had been. My condition would sometimes dictate when and for how long we were able to go places. These are just two examples of situations that fueled my guilt. I spoke openly with him about this feeling many times, and each time he would reassure me that I was not the burden I perceived myself to be. He would always say that he fell in love with my heart and my mind, rather than the physical condition of my body. Despite his words, the feelings of guilt, whether rational or not, were and still are difficult to remove from my life.

Through this initial diagnosis process, there were only a handful of people who I shared all of the information I had with respect to my health. My faith in God played a key role whenever I had to deal with these emotional factors of my condition. There were many times when the emotions were so overwhelming, and the only way to get through the negative feeling, was to turn it over to God and let him take control. He always brought me through the rough patches without fail.

The Lord provided a partner here on earth that became my daily strength and the voice of reason whenever my emotions were running in high gear. This partner was my husband. When I needed to talk, he would listen for as long as needed, sometimes for several hours, allowing me to work through my emotions. If I needed to cry, which I rarely ever did prior to this disease, he would hold me for as long as I needed, until I completely cried out whatever emotion I was experiencing. My husband has only spoken words of encouragement with respect to my condition, and has never made me feel like our lives are less full because of it. When I am walking slowly, he holds my hand, and has learned to let me speak for myself even if it takes ten times longer than normal. When my husband has done everything he can to help me through a bad emotional event without success, he is the one who reminds me that it is time to give it to the Lord to deal with. My husband is my partner and best friend on earth. The Lord is my Savior who carries my burdens when we no longer can.

Internet Education During Diagnosis Process

I have previously written about the value of the Internet when trying to find a patient friendly physician. Additionally, the Internet has become my main research tool since I first began my search to find the cause or causes of my various symptoms. The Internet holds a vast amount of information, in one convenient location, which is so important when a patient is dealing with an undiagnosed condition. I have spent more hours than I can count, researching my symptoms one by one, cross-referencing conditions, and essentially ruling out conditions that were not applicable. This is not an example of a patient playing doctor. I was a patient, who took charge of her health by doing research, and who educated herself enough to be able to ask the right questions to specialists that needed answers.

Although we have been taught to depend upon physicians in the medical community to provide all of the answers for our healthcare needs, I have learned that taking this approach is not beneficial. I acknowledge that physicians have more knowledge about medical related issues than I will ever be able to glean from the Internet. However, each physician’s knowledge base differs, largely due to his or her specialty. For example:

1. A Primary Care Physician is a physician who provides both the first contact for a person with an undiagnosed health concern as well as continuing care of varied medical conditions, not limited by cause, organ system, or diagnosis. This physician can determine the cause of many acute conditions, such as an ear infection or a virus. Although a Primary Care Physician is not restricted from diagnosing a chronic illness, and will often render a differential diagnosis, many will refer a patient to a specialist that is specifically trained in a category of illnesses, to insure that the differential diagnosis is accurate. I personally believe that this action contributes significantly to the patient’s peace of mind, allowing the patient the peace of mind, knowing that the differential diagnosis is the correct one.

2. A Neurologist is a specialist who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles. A patient might be referred to a Neurologist if the primary care physician suspects a stroke, cerebral palsy, or a brain tumor.

3. A Movement Disorder Specialist is a Neurologist who sub-specializes in a group of similar neurological conditions that affect the way the body functions. Parkinson’s Disease, Dystonia, and Tourette syndrome are examples of conditions that would prompt a referral to a Movement Disorder Specialist.

4. A Rheumatologist is a physician who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones. Under the Rheumatology umbrella, there are more than 200 types of these diseases, including rheumatoid arthritis, osteoarthritis, gout, lupus, back pain, osteoporosis, and fibromyalgia. Many of these conditions can be difficult to diagnose.

It is not by chance that I mention the above referenced physicians. From my experience, these physicians are the ones that a patient may see when the motor functioning of the body is in question. Specifically, I am referring to chronic conditions that may affect movement, coordination, balance, muscles, joints, etc. This would exclude other types of chronic illnesses such as heart related conditions, internal organ function, cancer, etc. I have learned that symptoms of chronic conditions affecting the motor function of the body can often be symptoms of either a rheumatic disease or a neurological disease. Because of this, a patient may be sent to see a Rheumatologist to investigate a rheumatic cause for the symptoms, and may then be sent to see a Neurologist to investigate a neurological cause for the symptoms.

One of the first specialists I initially saw was a Rheumatologist. I was sent to the Rheumatologist for an evaluation, specifically to rule out or confirm fibromyalgia. In addition to the fibromyalgia evaluation, my Rheumatologist ran specific blood tests to rule out other rheumatic diseases that she thought could be causing my symptoms. After her evaluation was complete, it was her opinion that my symptoms were neurological in nature.

From this point forward, I began seeing Neurologists, which includes Movement Disorder Specialists, through my insurance and as a private pay patient.

Rheumatologist – When I was referred for an evaluation, specifically for fibromyalgia, I spent multiple hours on the Internet to learn as much as possible about the condition. Additionally, I familiarized myself with some of the more well known rheumatic conditions, but only those conditions that had the potential to be the cause of my symptoms. I also made sure that I understood the types of blood tests and other diagnostic testing that are often ordered when rheumatic conditions are being considered. By educating myself, about not only fibromyalgia, but also the various other rheumatic conditions, I was able communicate effectively with the Rheumatologist during the visit. It enabled me to understand, the medical terminologies she used, why she ordered certain blood tests, and fully comprehend her opinion that my symptoms were neurological in nature. Finally, the greatest benefit I received by doing this research was confidence. I now had the knowledge to know the right questions to ask, the knowledge to understand the answers given, and the knowledge to know when an answer was contrary to what I had learned through my research.

Neurologist / Movement Disorder Specialist – I have been evaluated for neurological conditions by several Neurologists and Movement Disorder Specialists. I performed the same types of research for neurology as I had for rheumatology. When Multiple Sclerosis was a potential diagnosis, I learned everything I could about it, other potential neurological conditions, as well as appropriate testing through the Internet. A few years later when Parkinson’s Disease and Dopa-Responsive Dystonia became the focus, I learned everything I could about those conditions, as well as learning the difference between a Movement Disorder Specialist and a Neurologist. Based on my last visit with the Movement Disorder Specialist, I am now learning all I can about the various Parkinson-Plus conditions, again using the Internet.

Some people may say that I went to the extreme with respect to my Internet research. I have spent many years searching for a diagnosis. The many roadblocks in that search inspired me to educate myself enough, to be able to remove those roadblocks. Without knowledge, a patient places himself in the position of blind acceptance, and is fully dependent on someone else with respect to his or her health. I prefer to be a team participant with my physicians, rather than sit on the sidelines, anticipating whether someone else will reach that goal line.

Information that is invaluable to a patient during the diagnosis process and prior to any visit with a specialist is as follows:

1. Research the condition, which may have been a differential diagnosis from your Primary Care Provider. Understand the symptoms, causes, diagnostic testing, and treatment for the condition.

2. Research your symptoms to see if there are additional conditions that could be causing your symptoms. Make note of these conditions, so that you can discuss them with the specialist during the visit.

3. Research types of diagnostic tests that are routinely done for the category of conditions that the specialist treats, including blood tests, MRI’s, CAT Scans, etc.

4. Research some of the medical terminologies that a specialist may use for the conditions that he / she treats. Often, no additional research is needed with respect to medical terminologies, because they are often inclusive within research done on conditions, symptoms, testing, etc. I have found that Wikipedia, which is a free online encyclopedia, is a great resource for medical research, especially with respect to medical terminologies that are difficult to understand. I will post a link to this site in “Resources for PD, PD-Plus and other Movement Disorders”.

5. Educate yourself about the type of specialist you will be seeing. If you are going to see a Rheumatologist, make certain you have a general understanding of what a Rheumatologist is and the types of conditions he or she treats. Wikipedia is an excellent source for this research.

In summary, the Internet is the most effective and readily available tool I have used, when doing research on any topic involving my health. It is my primary source for information on physicians, medical conditions, symptoms, treatments, support groups, and any other health topic I may want to research. I have yet to find a topic of interest that was not available on the Internet. The Internet can provide a patient with knowledge. That knowledge provides the patient with the power to insure that the professionals within the medical community address his or her health in an appropriate manner that equals the patient’s expectations.

Internet Support During The Diagnosis Process

Within the last year, when it became apparent that I had a condition that was possibly Parkinson’s Disease or another form of Parkinsonism, I had the overwhelming desire to communicate with other patients with these conditions.

Originally, my potential diagnosis was either Dopa-Reponsive Dystonia or Young Onset Parkinson’s Disease. Both of these conditions respond to Sinemet, but the conditions are caused by two different mechanisms.

The first message board that I signed up for was DRD Central. This board is a support system for patients who have been diagnosed with Dopa-Responsive Dystonia. Because I did not have a firm diagnosis for any condition, I was concerned that I might not be welcome to participate on the board. Those fears were abolished by the responses I received to my first posting. Not only was I welcome, but the others were more than willing to answer questions about their own experiences with the condition, which gave me a vast amount of information, to compare to my own symptoms. Along with the communication between others and myself, the ability to read old posts served as a resource for additional information. Because of my experience with this board, I am going to include a link in “Resources for PD, PD-Plus and other Movement Disorders”.

The next message board that I signed up for was YOPA, which stands for Young Onset Parkinson’s Association. This board is a support system for patients who are diagnosed with Parkinson’s Disease. Again, not having a confirmed diagnosis did not prevent this group of people from making me feel welcome on the board. In fact, several people who participate on the board do not have a diagnosis. The people who have been diagnosed with Parkinson’s Disease, are very open to answering questions asked by those who do not have a diagnosis. It is a very friendly board, and the people who participate, whether diagnosed or not, are always there to offer words of encouragement and wisdom. Additionally, this board also has a chat room, as well as a place to ask a pharmacist questions about medications. Again, I will include a link to this site in “Resources for PD, PD-Plus and other Movement Disorders”.

Although there are several other online groups I have joined, the one that I am most active in is Daily Strength. What is unique about this site is that there are multiple boards that consist of mental health conditions, numerous medical conditions, relationships, and multiple self-help boards. Most people who are looking to communicate with others who share the same condition will be able to find a board to suit their needs. I obviously have signed up for the Parkinson’s Disease Board.

Daily Strength also has some other unique features that really make it feel like it is a family of friends. In fact, many refer to other posters as their DS Friends. A person can keep an online journal that can be read by anyone, or it can be locked, allowing only designated DS Friends to read it. People reading the journal can offer a response into the journal. Additionally, personal messages can be sent to individual users. The primary feature that makes the site more welcoming is the ability to create a profile that others can view. This profile is the user’s personal introduction, and a person may provide as little or as much information about himself or herself as they wish. It is a wonderful sight, and a link will be provided in “Resources for PD, PD-Plus and other Movement Disorders”.

The internet can provide statistics, symptoms, causes, and other pertinent information about medical conditions. However, the information shared between people who have the same chronic condition, puts the internet information into a more personal perspective. It gave me the opportunity to compare my symptoms and experiences, with others who have first hand experience with how Parkinson’s Disease or Parkinsonism affects their lives. Words read on the internet are just words. Words read on a message board in response to a post you made, lets you know that you are not alone with your condition.

These boards have allowed me to make contact with other people who have had or are having a difficult time trying to obtain a diagnosis for a chronic medical condition. Most of these people are in the Parkinsonism category for a potential diagnosis, since these are the boards I often frequent. Additionally, I have met others outside of these boards, who suffer from other forms of chronic illness, who also have had delays in diagnosis due to various circumstances involving the medical community. Some of these people were eventually diagnosed with chronic conditions that are easily identified through appropriate testing. These people, as well as the people from the boards, served as additional inspiration when I decided to write this blog.

Educations about my condition from the shared experiences of others, as well as support and encouragement, are only a few examples of what these boards have brought to my life. The most important and comforting knowledge they have provided me, is that I am not alone with my condition.

I have been blessed with family and friends who are supportive and offer me encouragement, for which I am very thankful. As important as they are in my life, none of them understands completely how this condition affects my life. They do not have a form of Parkinsonism, so they are not able to understand entirely how this condition affects my life. Therefore, it is the people I have communicated with through these boards, who can advise, encourage, and offer complete understanding. This is because they also experience the effects of this condition in their lives. They are an important part of the complete support system that I am lucky enough to have.

Based on my experiences, I would recommend to anyone who is diagnosed with a chronic medical condition, or is facing a diagnosis, to find a support group. Internet support groups have the advantage of being available to those people who have mobility issues that prevent attending a support group in person. It is also a great way to take the initial step into the support group arena, for those who may be hesitant to attend a local support group in person. Finally, I cannot say enough about the education, encouragement, and support that is given by others who participate on these support boards. If nothing else, it gives you a place to go, that will remind you that others completely understand what you are experiencing.

Time To See A Specialist

Although I have already detailed this information in My Story, including this information is important, because it leads into the reason why I chose to seek out a specialist, outside of my insurance.

The first time I went to see a neurologist, I had no idea what to expect. I did nothing in advance to prepare for the appointment. Additionally, I had no preconceptions about what I expected from a specialist. I believed that I would see the specialist, and after an examination, I would know what the cause of my symptoms were or be on the road to a diagnosis. I was wrong.

My primary care physician had referred me to a neurologist. I was being evaluated for Multiple Sclerosis. Rheumatoid conditions had already been ruled out. The rheumatologist I saw was very concerned that my symptoms were neurological in nature, and she wrote a very detailed report, which backed up her position. She was the second physician at this point who believed that I might be dealing with a neurological problem.

To make a long story short, I had the appointment with the neurologist. He did the typical neurological exam, and then he told me to follow up with him.

I returned to the neurologist, and I received quite a surprise when he rendered his opinion. This neurologist stated that my occipital headaches were caused by the fact that I was a female in my early thirties, and that it was common for women to begin having headaches at my age. He went on to say that my physical symptoms were being caused by severe depression. He told me that I was severely depressed, but that I did not realize it. I questioned him about the hard disc herniation that was touching my spinal cord, and he told me that it could not be causing my symptoms. (His opinion was based solely on a radiologist’s written report; he never requested to see the actual MRI.) I was then given a prescription for another anti-depressant. I left his office in tears.

To make matters worse, his report made me out to be just a depressed female, who had no “physical” problems. He even stated in his report that my cervical herniation was in no way responsible, advised against surgery, and he advised that I not be prescribed any type of narcotic pain relievers for pain. It appeared to me that this neurologist has made a presumption that I was the type to get “hooked” on narcotic pain relievers. I had made it clear to him during my appointments that I did not like to take medications, even those that you can buy over the counter. I was completely astounded.

Let us fast-forward two years. My symptoms had progressively worsened, and I was beginning to lose hope of ever having any answers. After a second neurologist that I saw through my insurance was unable to make any determinations, I finally convinced my primary care physician to send me to a neurosurgeon.

The neurosurgeon performed a thorough exam, and he then looked at the MRI films that I was told to bring with me. He pointed out the damage that was being done to my spinal cord on the MRI. The MRI films and a review of my symptoms convinced the neurosurgeon that my symptoms could be corrected by having a cervical fusion. He stated that my symptoms could absolutely be attributed to the hard disc herniation.

The surgery was a success, in my opinion. Unfortunately, I would soon realize, that although the surgery did correct the majority of my symptoms, new symptoms began to emerge within a few months after the surgery. These symptoms could not be attributed to spinal cord damage.

Multiple Sclerosis

I was at a standstill after my cervical fusion surgery. Because I began having new symptoms, I thought it was imperative to have Multiple Sclerosis completely ruled out. I had already been to the neurologists that were available through my insurance group. At this point, my primary care physician suggested that we take a “wait and see” approach. Unfortunately, I am not very patient, so I decided that it would be worthwhile to find a neurologist who specializes in Multiple Sclerosis, and to make an appointment as a private pay patient.

The Multiple Sclerosis Society referred me to a local specialist, and I was lucky enough to get a patient friendly physician. He requested further testing, which I was able to get the insurance to pay for. Based on all of the test results, as well as the exam, the neurologist’s opinion was that I did not have Multiple Sclerosis, but that I did have myelopathy from the cervival herniation.

I followed up with my primary care physician. He felt there was definitely something unrelated to the spine going on, but that the symptoms were not pronounced enough to determine a cause. Together, we decided that we would treat the symptoms as best we could. He believed that in time my symptoms would become more pronounced and clear, at which time we could pursue a diagnosis.

Parkinson’s Disease

Time moved forward two more years. Now, I not only had additional symptoms, but those symptoms were now with me every day, and it was becoming impossible to ignore them. My previous primary physician had retired, and I now had a new primary care physician, who is my current physician to this date.

Without a complete recap of what I have previously written, I was prescribed a trial of Sinemet, which had dramatic results. Because the Sinemet did improve my symptoms, I was able to get a referral to a Movement Disorder Specialist. Under normal circumstances, I would have been referred to one of the neurologists I had already seen while trying to rule out Multiple Sclerosis. Because Parkinson’s Disease has the distinction of being considered a movement disorder, I was able to insist that the insurance cover a visit to a Movement Disorder Specialist.

After waiting three months for the appointment date to arrive, I was sadly disappointed during that first visit. The Movement Disorder Specialist was not patient friendly, did not like to be questioned when he made statements that were contrary to what my husband and I had learned about Parkinson’s Disease through our research, and he refused to acknowledge that Sinemet was improving my symptoms. I decided not to see this specialist after my second visit.

I sought out another Movement Disorder Specialist as a private pay patient. I had hoped that I would get lucky like I had when I sought out the Multiple Sclerosis Specialist. Luck was not on my side. This person took offense that I was questioning the other specialist’s opinion, because she knew him to be a good physician. I was told that she did not know what was wrong, and she would have her office call me with information for another specialist. I never received any follow-up.

The next neurologist I saw was through my insurance. He was a new neurologist within my group insurance. He stated that he would be interested in having me as a patient. He believed that I had either Dopa-Responsive Dystonia or Young Onset Parkinson’s Disease. Unfortunately, after six months, he was honest enough to admit that he just did not have enough experience with movement disorders to render a diagnosis. I appreciated his honesty, but I was now faced with the fact that I had exhausted all of the neurologists within my insurance group. I belong to a small group, and all of the neurologists that were associated with this group had already seen me. I could have been referred back to any one of them, but there really was not much point in doing that.

I had no other choice but to search for a Movement Disorder Specialist outside of my insurance. I was so afraid that I would find another non-patient friendly physician, so I decided to get creative. I decided that I only wanted to see a physician who was truly interested in having me as a patient. There were a number of Movement Disorder Specialists in my area to choose from. I came up with a plan to narrow my options down, by using email.

I created a master email letter of introduction with two attachments, which detailed my symptom history, as well as an analysis of how each symptom related to either Dopa-Responsive Dystonia or Young Onset Parkinson’s Disease. I then searched the internet for Movement Disorder Specialists in my area. Once I determined which physicians, clinics, or larger hospitals I wanted to contact, I individually sent an email to each recipient. I sent out seven emails that morning. I was surprised when I received two responses by the end of the day.

One response came from the physician who founded a clinic that specializes in movement disorders, and the other response came from a larger teaching hospital. I did some research on the internet on each of the facilities, and I made the decision to make an appointment with the smaller clinic. A few of the specialists I had already seen were affiliated with larger institutions, and it appeared to me that it was more difficult to get personal attention, when there are so many patients walking through the door each day.

I called the clinic the next day to set an appointment and inquire about the cost per visit. I was to make an appointment with an associate, because the founder of the clinic was not taking new patients. I was surprised that not only was the cost reasonable, but I was able to get an appointment within two weeks. I had intended to email the physician to thank him and let him know that I had made an appointment with his associate at the clinic. Before I was able to do this, he had emailed me again to inquire if I had made an appointment. What astounded me was the fact that this physician not only took the time to read and respond to my original email, but cared enough to follow-up with me a second time. That depth of patient care is not very common. I was more convinced than before, that I had made the right choice on which specialist to see.

My husband and I went to this appointment fully prepared. Over the years, I had learned that providing as much information as possible was critical to helping a physician see the entire picture. I brought with me copies of all the records that I had that pertained to my current condition, as well as any records pertaining to my spinal problems. I also made a video of myself off Sinemet, so that the specialist could see how I am off medication.

The specialist turned out to be one of, if not the best specialist to date. During the appointment, the specialist looked through the entire stack of records I brought with me. She then performed a neurological exam. There were also multiple questions that she asked my husband and me. At the end of the appointment, I was told that she could rule out Dopa-Responsive Dystonia. She was not able to confirm Young Onset Parkinson’s Disease, but did diagnose Parkinsonism. The reason for not diagnosing Parkinson’s Disease was that my postural balance appeared to be worse than what would normally be expected in Parkinson’s Disease. This finding is more typical with Parkinson-Plus Disorders.

The specialist also requested that I have a sleep study done to rule out Narcolepsy and REM Behavior Sleep Disorder, because I have had symptoms of both for several years. I do know that sleep disorders are common in both Parkinson’s Disease and Parkinson’s Plus. For instance, narcolepsy has been associated with Parkinson’s Disease, and REM Behavior sleep disorder has been associated with Multiple System Atrophy, which is a Parkinson-Plus Disorder. Therefore, it makes sense entirely to have a sleep study done.

There is a reason that I wanted to include the rather detailed history of my experience with specialists, including those I was referred to through my insurance and those that I self-referred to as a private pay patient. Detailing the history allows me to pull together the three topics I wanted to address:

Why I chose to self-refer to a specialist as a private pay patient

How I was able to get tests I needed done and see a Movement Disorder Specialist, and have the insurance cover those costs

Persistence and knowing what you expect from a specialist



My Reasons for Seeing Specialists as a Private Pay Patient.

For both Multiple Sclerosis and Parkinson’s Disease, I was able to see neurologists through my insurance. Unfortunately, the results of these visits were less than satisfactory, including the one Movement Disorder Specialist I saw through my insurance. I decided that it was time to take the matter of my health in my own hands. I could have probably insisted and fought with my insurance, to make them cover additional visits to these specialists. The reason I chose not to take this path, was that it would have added a significant amount of additional time to the already vast amount of time I had spent looking for answers. I decided it was worth paying the money in order to save the time.

Although seeking a specialist outside my insurance did not guarantee that I would find a physician who was patient friendly, it did increase my odds. Because I was not limited by the constraints of insurance, I had the ability to choose the specialist from a much larger pool of physicians. I could choose a physician close to my residence, or I could choose a physician on the other side of the United States, if I so desired. Additionally, I could research a specialist, clinic, or associated hospital, prior to making that initial appointment.

I also see a Rheumatologist as a private pay patient. Originally, this Rheumatologist was associated with my insurance, so I did not have to search for her. I was so impressed with how thorough she was, as well as her level of care and concern, that I continued to see her as needed for my arthritis and bursitis, even though she is no longer a provider in my insurance group.

Once I decided to take charge of my medical care, including seeing specialists outside of my insurance, the diagnosis process speeded up dramatically. I do not believe that I would be at this stage of diagnosis, if I had not made the decision to look outside of my insurance. In summary, I will choose to see a specialist outside of my insurance, when it appears that there is extreme limitation with respect to the availability of knowledgeable specialists within my group insurance. I will always attempt to see a specialist within my group first. I now limit the amount of my time I am willing to invest in a specialist, who may not be the right person to be part of my “medical team”. Additionally, if I find a specialist, who is not associated with my insurance, I keep them as part of my team. If there is a specialist within my insurance group that should be part of my team, they are also included. In my case, the surgeons I have met with through my insurance are the only specialists within my insurance group, who remain as part of my team. My Rheumatologist and Movement Disorder Specialist are specialists I see as a Private Pay Patient. Whether or not the specialist is associated with my insurance, all are willing to work with my primary care physician, for the benefit of my health.

Testing, Specialists, and My Insurance

As you may recall, I sought out a specialist who specifically dealt with Multiple Sclerosis, when Multiple Sclerosis was a potential diagnosis. Although this specialist was not part of my insurance group, once he determined that additional testing was needed to rule out diagnosis, my insurance covered those additional tests. I have found that the insurance will cover tests that were not previously offered to a patient, if a specialist / physician recommends they be done. My presumption is that because these tests were determined to be necessary by a specialist in the field of Multiple Sclerosis, the insurance was not willing to take liability for not paying for the tests, especially had my true diagnosis ended up being Multiple Sclerosis. Consequently, had I stayed with the course of medical management that was being done through my insurance, I might not have been able to completely have Mulitple Sclerosis ruled out for several more years.

I have found that the above scenario holds true to this date. Although my specialists are not part of my insurance group, my primary care physician does not hesitate to request any test that these specialists feel is necessary. As long as the specialist is willing to work with and communicate with my primary care physician, there does not seem to be any issues with respect to testing. It is my personal belief that the medical team “spirit” and the open communication facilitate the willingness of my primary care physician to make the appropriate decisions with regard to my condition.

Although a Movement Disorder Specialist is not normally covered under my group insurance, I was able to utilize my insurance in order to see one. I believe that it became apparent to my primary care physician, after the positive results I had taking Sinemet, that there may have been prior specialists and primary care physicians who had incorrectly assumed that I was suffering from a mental health disorder. I believe that the prior physicians’ opinions that he received, were the reason that he also initially believed that my symptoms were mental health related. Once he became aware that mental health was not the problem, he immediately sent me to a local Movement Disorder Specialist. Additionally, my primary care physician became my biggest advocate with respect to helping me confirm a diagnosis.

I believe that I was able to see the Movement Disorder Specialist through my insurance for two reasons. Again, my personal opinion is that there could have very well been liability issues, if I had not received appropriate care in light of the potential diagnosis. Additionally, because Parkinson’s Disease and other related disorders, fall under a specific neurological class of conditions called movement disorders, a Movement Disorder Specialist is the most qualified to confirm a diagnosis. My insurance group did not have a Movement Disorder Specialist as a provider, but they did cover the visits.

Persistence / What I Expect From a Specialist

Each person needs to be able to define what he / she expects from a specialist or primary care physician. Over the years, due to my experiences with the medical community, I now have very firm expectations for those professionals who hold my health in their hands. My expectations are as follows:

1. Must be willing to take the appropriate amount of time during an appointment to address the reason for the visit, address any questions I have, and discuss any plans for testing, treatment, etc.

2. Must have good communications skills, as well as good listening skills. I want to be able to understand, in layman’s terms, what is being said about my medical condition. I also want to have the assurance that what I am saying is being taken seriously, being understood, and being used as a tool for diagnosis or treatment.

3. Must be willing to answer questions, even if those questions contradict his / her opinion. Example: If the physician makes a statement that is contrary to something I have read through research, I want to have the ability to discuss the difference between his / her opinion and the information I have found. Essentially, he / she must be able to acknowledge and deal with me, as a patient, being educated as much as possible about my condition.

4. Must not immediately make a diagnosis based on depression, stress, age, gender, life circumstance, or for any other biased reason that cannot be ascertained without a mental health evaluation or hard evidence based on testing that can prove a physical condition / disease does not exist. I do not want a physician’s quick fix or best guess. I want an accurate diagnosis, to the best of his / her ability, based on facts.

5. Must exhibit a genuine interest in my health, including appropriate testing, medications, or any other type of treatment that needs to be rendered.

6. Must be willing to work as a team with my primary care physician and me, in order to insure that my medical treatments are the most appropriate for my condition.

7. Must be willing to be honest and say that he / she is not able to ascertain a diagnosis, either due to lack of experience, vague symptoms, or for any other reason. I have more respect for a physician who says they do not have the answers, than for a physician who gives a diagnosis that does not cover the symptoms I experience.


Persistence


Regardless of the chronic condition, a patient must be persistent when seeking a diagnosis. I came up against many brick walls throughout the last ten years. There were many times I felt like throwing in the towel, and felt like I should just sit back and wait for this condition to take over. Despite being told I was depressed, too young to have true spinal problems, too young to have Parkinson’s Disease, and numerous other false scenarios provided by specialists and primary care physicians over the years, I knew that if I did not persist in finding a diagnosis, no one else would.

There were brief periods where I did have to take a step back, in order to regroup and rethink the methods I was using to get the answers I sought. Within each short break, I would come up with new ideas and methods to try, in order to persuade the next specialist to take an interest and want to help me get to the final answer. These breaks, as well as some guidance from my husband, helped me learn, not only how to deal with physicians / specialists, but what I can do to better up my chances of finding an appropriate specialist.


What I have learned through the last ten years, and now put in to practice, is the nexus of why this blog exists. It is my hope that what I share may help someone else to save time, frustration, and tears, and additionally to help someone not to have to learn by trial and error. If you visit a specialist / physician who show no interest or appear incapable of empathy, then move on. I went through several specialists and primary care physicians, until I finally found just the right ones, who were as interested in my health as I am. I chose not to give up, and that persistence provided me with an education I will never forget, but also a great group of medical professionals who work with me as a team.

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.