Sunday, January 27, 2008

Fluctuations In Parkinson’s Disease

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

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

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

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

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

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

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

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


Diane J Standiford said...

Hi, I am starting a Chronic Illness Blogs for my blog site; may I add yours? Diane-

email me
(I have MS and I find your blog very inspirational and informational)

Patient With A Plan said...

Hi Diane,

You and I have exchanged a few emails, and I am very pleased that you would like to add a link to my blog.

As you know, I have visited your site and also found it very uplifting and informative. I will be adding a link to your blog on mine also.