One of the most frustrating things about Parkinson’s Disease is finding yourself unable to do things that you used to enjoy doing. I suppose this applies to aging in general, but with PD, it is premature aging. I was never a great skier, but it was something I enjoyed.
There was a recurring theme in some of my dreams when I was younger…I’d try to run, but despite my best efforts, I was unable to make any forward progress. It was never a situation where I was running away from something, more like I was trying to run toward something. I’d get frustrated, trying to move my legs faster, but I would seem to be running in place. After some period of frustration, it would hit me…I’d remember that I could fly, I just needed to use my arms.
Flying dreams were the best. I’m certain these dreams were inspired by my having watched the Greatest American Hero TV show at an impressionable age. Thankfully, my flights did not require a special form fitting body suit provided by aliens. Let’s face it, even by dream standards, that would be weird.
While traveling back home on a long cross country flight, I got a chance to read a fascinating book, “Suggestible You: The Curious Power of Your Brain to Deceive, Transform and Heal” by Erik Vance. The first few chapters are all about the placebo effect, and how some conditions, such as Parkinson’s Disease, are particularly prone to it.
In a nutshell, the placebo effect is the big challenge in phase 3 of a clinical trial for a new drug or treatment. In these so-called double blind studies, there is one group that receives the treatment and another group that receives a fake treatment known as the placebo. The patients, and those evaluating the patients do not know who is receiving the real treatment or the placebo until the end of the study. For a treatment to be deemed effective, the patients who received the treatment need to fare better than the placebo group in a statistically significant way. In other words, the treatment being tested has to prove that it’s better than nothing…a challenge that is surprisingly difficult to meet.
I’m a relative newbie to PD, having been diagnosed 2-1/2 years ago. Since that time, I’ve had the pleasure to meet individuals who have lived with Parkinson’s for 10 to 20 years, and more. The common theme for living well with PD is regular exercise. The sooner that you learn to love to exercise, or at least find an exercise program that you enjoy, the better off you will be.
You need to think of exercise as your most important prescription, something that you need to make time for almost every day. Exercise is more important than any medication. (But medication is often necessary or helpful to maximize your ability to exercise.)
At the recent World Parkinson Congress 2016, the main theme that I noticed is that exercise is the best medicine for PD. It may not be as effective at treating PD symptoms as l-dopa, but all the research and anecdotal evidence clearly shows that collectively, those who exercise regularly enjoy a far better quality of life with PD, for a longer period of time, as compared to those who do not. While medical research continues to be important, the best thing that can be done for the growing number of People with Parkinson’s (PwP) today is to encourage exercise.
There is a growing consensus that more exercise is better, and there is concern that many PwP are being given outdated or incomplete exercise recommendations.