Let me start by describing how a typical day for me begins:
I wake up, stiff and rigid and most mornings sore, but not too bad. I move slowly, and that has nothing to do with being or not being a morning or a night person or how much sleep I did or didn’t get, it’s just the speed I move at.
I’m usually up between 6:30 and 7:00. I shuffle downstairs, take my morning Parkinson’s meds and my heart meds and my acid reflux pill – it borders on the ridiculous, the desktop in my office looks like a pharmacy – and grab a cup of coffee and see my wife off to work. Then I go in my office and log on to the computer, checking out e-mail and Facebook and reviewing any writing I may have done the night before. The point here is to kill enough time, thirty to sixty minutes, to allow my Carbidopa / Levodopa pills to kick in. Until they do, the rigidity is pretty bad, and I feel pretty crappy, and a little bit nauseous until I eat something. I’ve found that waiting a half hour to an hour after taking my morning blends of pills and caffeine before eating seems to work best, and I usually have something very light, like a cereal bar or a clementine and a glass of juice.
Then the “dopas” kick in and most of my rigidity goes away, and I’m loose, too loose. I flop around the house, my head bent over my torso like Groucho Marx, and my legs try to keep up with my head and the more they try to keep up the more they fall behind and the more out of control I become, my momentum finally stopped by crashing into walls and doorways. I overshoot targets and narrowly dodge furniture.
Then, at about nine or ten o’clock, I get up and get in my car and drive myself the seven miles to the hospital in Kenosha where, just about a year ago now, I underwent triple bypass surgery. As a result of being a Cardiac Kid, a member of the heart disease fraternity, I am eligible (for a reduced annual fee) to use the rehab center at Kenosha Memorial Hospital. I go every day and work out for an hour to an hour and a half, and almost every morning, when I get up, I don’t feel like going. But I drag myself up and out of the house five or six days a week, reminding myself how out of shape I was in when my heart issues hit last year, and how much I want to avoid a repeat of that whole experience.
So I get there and I work out. I still start by loosening up with the same basic stretches and hand weights I learned when I was still recovering from the surgery. I know from a cardio pulmonary standpoint they aren’t required anymore, but they loosen me up and shake off some of the residual Parkinson’s rigidity, and while I can’t quantify it, I believe they’ve helped me increase my range of motion.
Then I do thirty minutes on a treadmill, every now and then graduating to an increased incline and speed. I’ve kind of reached a limit on these settings due to my floppiness – often tines, the first ten minutes or so are dominated by my stooped posture and impaired balance, and it can be a struggle to keep up.
Then, on Mondays, Wednesdays and Fridays, I hit the weights. There are seven machines I do twenty reps of differing weights. I only do these every other day to give my muscles a day to rest. I find my strength has increased since last summer when I started – recently, less dramatically and slower than at first, but still increasing nonetheless.
Then I do one last activity, experimenting on different equipment, recently settling on a rowing machine, which I currently do five minutes on every day, counting in my head the number of strokes I pull. At first, the five minutes was wiping me out, but now, I set a personal best on the number of strokes almost every day, and even though I’m doing more faster, I’m not nearly as fatigued as I was at first, and soon I will up the number of minutes,
Then I cool down by walking a few laps on the corridor surrounding the facility when it happens. Every day, at some point, I notice that I’m walking in a straight line, with my arms swinging, my head erect. None of the stooped posture and flopping around like a fish on the end of a line. For at least an hour, on good days up to two or even three hours after exercising, I move about normally, and while Parkinson’s still annoys me with constant salivation and impaired speech and incomprehensible handwriting, its primary symptom, the impact on moving, is gone.
The really great thing is that every day, at some point, usually while still walking my laps, I become aware of this phenomenon, this daily miracle, and every day, I am truly appreciative and thankful for its occurrence. I don’t know how long this will continue, if eventually it won’t occur anymore, but for now I could care less. All I know is that when it does occur, I feel amazed and blessed, and for that moment, I take nothing for granted.
Don’t it always seem as though / You don’t know what you’ve got ‘till it’s gone
– Joni Mitchell
Parkinson’s disease sucks and I wish I didn’t have it. I have to confess I ask myself, more often than I should, why me? Pure bad luck is the best answer I’ve come up with so far.
But then I ask myself, how many other people are made aware of how beautiful and wonderful the ability to simply move freely is, and I realize that luck, good or bad, is a double edged sword, and that curses and blessings are often wrapped in the same package.