Living with Parkinson's Disease

Something was not right that November of 2004. I would wake most mornings having difficulty preparing for the day. There was a stiffness on my left side, particularly my arm and hand. No pain, just a troubling stiffness which made bathing, dressing and tying shoe laces a chore. Then at work, as I would play music for the residents, the stiffness became more pronounced. At first I thought it was a pinched nerve or a strained muscle and over time it would improve. But a few months later it was still prevalent.

April 2005, I went to see my primary physician for a checkup to find out what was going on. A physical, blood tests, an MRI and a nerve conduction velocity test revealed two things - a lesion on the right frontal lobe of my brain and bilateral carpal tunnel. The lesion, I was told, was non-specific and the carpel tunnel I suspected after 46 years of playing piano. But this did not explain the rigidity on my left side. Suspecting Parkinson’s, my doctor referred me to a neurologist.

It is early June of 2005 as I go to my first appointment with the neurologist. I was quite impressed with his meticulous exam. He took time to check for balance instability, how I walked, testing sensitivity, checking dexterity of fingers and hands, observing movement of my arms and legs, and watching my facial expression. He spent time asking about family history or if I had been exposed to certain toxins. His conclusion - I had the classic symptoms of Parkinson’s.

I had mentally prepared myself for this news. But it still hit hard with the realization I have a chronic, progressive disease meaning that symptoms continue and worsen over time. Did I have questions! How fast would this progress? How long before I am disabled? Do I need medication now? What type of medications would I have to take? And others. He graciously answered them all.

Since my symptoms were limited to one side (stage one) and because of my younger age (52yrs old) he thought it would be best to start me on what is called a dopamine agonist. Together we chose the agonist with the least amount of side-effects - Requip. I began the regimen of starting with the smallest dose and gradually increasing to the next higher dose. At first my symptoms were improving. However, when I reached the 1mg dose three times a day, I was getting more fatigued then I should and could not function proper. So we switched to another agonist - Mirapex. But as I got to the larger doses, I began to experience hallucinations, a side-effect of this drug.

Now some months into my therapy my neurologist put me on Levadopa. Levadopa works well for rigidity, but one side effect that appears over time is dyskinesia - the difficulty or distortion in performing voluntary movements. I was hesitant at first to start this drug, but the benefits would prove favorable. I started with the 25/100 dose twice a day but the regular version was too intense first thing in the morning. I could not function well the first hour or so after taking my morning dose. So we switched to the CR (controlled release) version. I’ve been on this type since April 2006 and it is working well.

Depression is not uncommon among those of us with PD. And sure enough it hit me too. I recognized this from PD literature I had read. So when I returned to my neurologist he prescribed a simple medication to help me deal with this depression

Since my diagnosis in June 2005, I have taken an active role to learn more about this disease and what is being done in the medical field to provide better symptomatic relief or find a cure. I am active in a support group finding comfort and encouragement from others who have PD. I continue to work daily and do as much as I can around the house. I continue to spend time with my family %u2013 going to various functions and take outings with the grandchildren. The only thing different is that I do these things at a slower pace. I’ve adjusted to PD and will continue to do so as the disease progresses to keep living life as “normal” as I can.

Some people share tales of surviving catastrophic events or suffering some type of difficulty and say, “…but at least we have our health.” However with PD you begin to lose your health in stages. When I first learned about having PD I use to focus on what I would be losing in my life. I even stopped doing things I enjoyed because I thought I could no longer handle them.

But now I’ve grown to realize that I can still continue to live my life fully and with dignity. What was once considered a loss has become a gain. I can keep doing the things I enjoy, although with some difficulty, diminished ability or assistance. I may move and talk and look somewhat differently, but in my heart and mind I am still the same person God created me to be. I am a person with value and worth, able to persevere with the strength He provides - enjoying each new day He so faithfully gives.