Both states or extremes are completely debilitating. Frozen or dyskinetic, either way I am unable to function and perform the simple chores of daily life. Happily (and I believe this is due to all the exericise) after 23 years I still have moments - 20 minutes here, an hour or two there - where I am almost completely symptom-free. These moments I cherish and make the best use of them. Either exercising my body and/or spending time with friends and family. If PD has taught me anything it is that these are the real important parts of life. The rest is just background music.
After several months of the intense exercise program, my body began to really take shape: plenty of muscle mass. Not big and bulky, just long and lean. My family began to jokingly refer to me as "Mr. PD." I liked the idea and even had business cards made up with the attached photo and this self-proclaimed title under my name. One version of the card includes the slogan, "Parkinson's: it's not for sissies." I think that, whenever possible, taking a light-hearted approach to a seious condition like PD can be a stress-reducer. For me, I believe that I am also teaching my son (13 yrs old) how to deal with adversity.
Hello, again. It has been almost 2 years since I wrote some of my PD life experiences. After much reflection (and almost weekly gentle requests by PLM staff!), I decided to update my profile. I promise not to post any more cheesy photos of me shirtless, showing off my “6-pack.”
I am now 55 years old, and have had PD for about 25 of them. As hard as I try, I realize that I cannot keep up appearances forever. I mentioned in my initial profile that I looked young for my age and people always assume that I am about 10-15 years younger than my actual age. Well I must be aging at warp speed, because in the last 2 years, when most people learn of my age, they look at me without a hint of surprise, as if to say, “Yeah, that looks about right!“
So in terms of physical conditioning, I have to be content now with knowing that I look as healthy as I can under the circumstances. I have put on a little weight…but the good kind of weight: muscle. I realize that, at my best, no one is going to mistake me for “Ahhr-nold,” but we all need all the strength we can muster if we are to defeat this monster…or at least give it a good, hard fight.
If you recall, at my last writing, I said that exercise, in my view, was probably the single most important action we can take to slow the progression of the disease? Well, I haven’t stopped my exercise in the past 1½ - 2 years and can honestly say that overall, I am in about the same PD condition I was then. In fact, I don’t believe I have progressed much at all in the last 10 years. Maybe some minor changes, some for the better, some for the worse. But overall, I have kept progression at bay. Some people even swear that I look better than a couple of years ago. I can only postulate it was due to my exercise. Since we cannot run control experiments on ourselves, and there are so many other variables, it is extremely difficult to measure improvement or decline. I just know in my gut that exercise is the best medicine for now.
And the news is growing. I am reading more and more articles and studies on the advantages of exercise for PD patients. So we have to celebrate all victories, big and small. Years ago, when my son was just 2 yrs old, I went for a third opinion. The doctor, after he examined me said that, yes I have a classic case of PD and as he glanced over at my infant son, told me I would never get to play ball with him, and would probably not live past 60 years old. Nice bedside manner, huh? I am happy to tell you that my son is now 14½ years old and we play ball almost every Sunday. He’s much bigger and better than I am, but I can still run up and down the court with him, and when possible, attend one or two of his high school team’s games.
As for my longevity, I have 5 years to prove the doctor wrong on both counts. So far, as Charlie Sheen would say, I’m “winning!”
That’s my story for now, and I’m glad I had the opportunity to bring you up to date. Please remember to exercise, with your doctor’s approval and supervision. Stay positive and hopeful. At least try to be. I hope you all get at least the results that I did.