I took more than a year off from updating the Parkinson FIT website…and stopped keeping up with the various PD websites, Twitter, and news feeds. I can’t really say I had a plan, I told myself that I was obsessing a little bit too much about Parkinson’s disease. I figured that I would just go about my life…keeping up the healthier lifestyle and exercise regimen that started after being diagnosed with PD 4+ years ago. All this exercise was time-consuming enough…
All in all, it seemed like a pretty good year…not that different from the year before. This spring, I ran another half marathon, and went on another ski trip…and I get a sense of déjà vu looking at the Parkinson FIT website, and seeing my posts about these same activities the previous spring.
So what brought me back online?
It was my decision two months ago that it was time to stop taking a dopamine agonist (pramipexole/Mirapex).
In a research study published in the Journal of Parkinson’s Disease, researchers from Northwestern University determined that that people who exercised regularly had significantly slower declines in HRQL (health related quality of life) and mobility over a two-year period.
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.
In a nutshell, the placebo effect is the big challenge in phases 2 & 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.