By Teresa Swartz Roberts
Blog post 17. Copyright 2017
It wasn’t sustainable. The miracle, I mean. Wellness. My zeal for wellness. When I was diagnosed with Parkinson’s two years and four months ago, my neurologist told me that in two to five years, we would be tweaking my dosage because my carbidopa-levodopa would stop working as well as it had in the beginning. The medicine was an elixir that gave me a reprieve from my frozen, shuffling body. It helped me feel like myself again, made it possible for me to throw myself into physical and speech therapies, appreciate new endeavors.
I was sure I would be the exception, the patient whose first dosage of medicine lasted past the five-year mark. I wasn’t, and it didn’t. And I was so disappointed in myself. I had thought that with commitment I could single-handedly fight Parkinson’s Disease. In the process of trying to stave it off, I almost let the disease win way too soon.
Last month I missed a dose of my Parkinson’s medication, and it was clear that something was wrong. I was with a friend who commented on the change in my gait. I told her that I experience that change several times a day as my meds wear off, and then I actually heard what I was saying.
In my quest to be that patient, the one who didn’t need to up the dosage until after the five-year mark, I had let myself plan my life around when I would be unable to move adequately. Granted, I still have to do that to a certain extent, but my good hours had shrunk. I was slowing down, tensing up, thinking my steps while my brain and body waited for the next dose of the magic potion that put back my depleted dopamine.
I start out my day with mild exercise, which I consider a prescription. I am pretty good in the mornings, but by the time I’m having breakfast, I am grateful to sit until the pills work their magic. I try to wait a while after my meds to floss my teeth because my right leg shakes, but it’s not pretty like it was when Elvis did it.
I can feel the dopamine starting to work. I’m not as tense. My face exercises begin to evolve into real smiles, and it’s easier to keep count as I run through them. When I stand up, there’s less pain and stiffness, and that first step happens without coaxing. I look forward to that moment. And I dread the wearing-off time.
What I dread even more is admitting that I’m not in charge of this process. I don’t know when my next dosage increase will be because I don’t know when I’m going to need it. In the beginning, when I was first diagnosed and making progress, I counted the days: I have been given 14 days better than I was before. . . four months. . .a year. I need to go back to that, to live in today and make it what I want it to be. Tomorrow my medicine may have lost its potency.
So I’m trying a new dosage of carbidopa-levodopa and a new approach to exercise, my other medicine. I’ll still do my morning exercises in bed, stretch while I’m making my bed and putting on my socks. I’ll still do the Parkinson’s-specific Big and Loud LSVT exercises, more speech therapy and facial exercises to help me swallow and smile. I will still work out in a swimming pool regularly and in a gym occasionally.
Now I dance, just a little. A little is what I can manage. Dancing to one song every day is more than a fitness goal; it’s a miracle. I took my first Yoga for PD class this week through PD Gladiators. I applied for a Parkinson’s scholarship to our local YMCA. It’s a little farther from my house than my pool or gym, and more crowded, but the Y offers some Parkinson’s-specific exercise classes, and I might use the gym more often.
So far, so good.
When my medicine has lost its power, I will have to recognize that I can do something about that or accept that I can’t. I’ll still have all those days, years now, that I was blessed with a better me. That is still a miracle.
Meanwhile, babies will still laugh, sunsets will still paint the clouds orange, gardenias will still smell heavenly. Miracles everywhere. I just have to notice them.