"Living well" with Parkinson's requires
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I have long been "Levodopa phobic," convinced that starting on this "gold standard" treatment would be the beginning of the end, ushering in dyskinesia and motor fluctuations. My doctor assured me that not everyone experiences these side effects, and that those who do are affected to different degrees; but she could offer no guarantees as to how I would respond. Instead, she told me I deserved to feel better and handed me a prescription, expressing confidence that when the time was right I would know it and do what I had to do. A few months later, 12 years into my journey with Parkinson's, I surrendered… or at least that was how I viewed it. My gait and balance had deteriorated to the point that I was reluctant to go places alone. Getting dressed was laborious, as I pleaded with and then cursed my leg to lift off the ground and slide into its own pants opening. Getting up from a chair and in and out of a car was equally painful. It was time. I took my first full dose of Levodopa while out to dinner with my husband. As we walked back to our car, I told him I felt surprisingly good. He told me the medicine couldn't possibly work that fast. Inside the car, I fully extended my left arm out in front of me. There was no movement, not even a twitch in my pinky. I didn't want to go to sleep that night, afraid I would awake to find it had all been a dream. The next day, I met a friend who also has Parkinson's for lunch. She watched me stride confidently from my car to the restaurant and rushed out to greet me. "They found a cure for Parkinson's and you're getting it in a clinical trial," she exclaimed excitedly. "Not exactly," I answered.
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Most of the time, now, I forget I even have Parkinson's. I have regained my independence and am again enjoying full days of shopping, eating, and visiting with girl friends. While on vacation, I swam 12, 40-foot laps every other day, eliciting compliments from a personal trainer who looked at me with astonishment when I told him I have had Parkinson's for 12 years. He, like many others I have encountered since beginning Levodopa, said he never would have even suspected I had Parkinson's. I know this "honeymoon" won't last forever, but I am thankful for every good day. I share my story not to encourage anyone to start on Levodopa or to imply that they will experience what I have. Parkinson's is unpredictable, and no two of us have the exact same symptoms or disease progression. What I have learned and want to share is that living well with this "designer disease" requires we put aside our fears, and with the advice of our doctors, consider all treatment options available to us.
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