by Dorothy Ross
Balancing physical activities and medications with social and civic commitments is vital for people with Parkinson’s, and it isn’t easy.
With only twenty-four hours in each day, balance requires planning. If I’m lucky enough to sleep for seven or eight hours at night, I often wake up with a bad case of “off” time. I stuff my feet into my Uggs and shuffle into the bathroom for morning meds. Then I wait. And I wait. And I wait for the medications to work their magic. They will not be rushed.
Coffee clears my head of its morning fog, but it does nothing to move my feet. I don’t dare schedule any appointments before nine a.m. because I’m not safe behind the wheel until my feet can be made to obey my brain. The hours between six and nine in the morning aren’t a total loss. I type awkwardly during that time, but I can usually answer email, browse the Net, and keep up with the grandkids’ Facebook pages.
Once the morning shot of levadopa makes its way to my extremities, I’m ready to start my day. My husband and I walk our big dog in the University of California’s sprawling orchards–two or three miles most days. By the time we get back, I’m tired and “off” and I need to sit again until the next dose of meds takes effect.
I’m generally in good shape through the middle of the day. If you saw me downtown on my way to meet a friend for lunch, you might not believe I have PD. But when I get home from my outing I’m often listless and sagging, and sometimes freezing in my tracks. So I take a pill and lie down for a nap to rest up for the evening.
You don’t need a detailed itinerary of my week’s activities to understand how important it that I listen to my body and make a plan to be alert and strong when I have a commitment that requires my active participation. I’m sure that’s what Michael J. Fox does; otherwise, he couldn’t stand up to act in front of the camera.
To help me track the fluctuations in my moods and movement capabilities, my doctor has suggested that I keep a PD journal. I record the hours of sleep and naps, the timing of meds, amount of exercise, “off” hours, and social events. The details in my little book serve as vivid reminders of how important all aspects of my life are and how I must make time for family and friends and fun, as well as dance and yoga and walking–if not every day, then over the course of every week. That’s the balancing act.
Dorothy Ross facilitates the Parkinson’s Support Group in Davis, California. The subject of the current SCN writing contest suggested this piece for that support group’s blog.