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There is a growing consensus that more exercise is better, and there is concern that many PwP are being given outdated or incomplete exercise recommendations.
One of my fellow boxers at the Rock Steady Boxing affiliate in Hilton Head/Bluffton, SC has been having issues of dizziness and brain fog/light headedness. He’s not alone, as 1 in 5 people with Parkinson’s are also diagnosed with Orthostatic Hypotension. I’ve been collecting some information to help him prepare for his next doctor’s appointment, and thought this may be helpful to share with others.
Most of us are familiar with the term hypertension, which refers to high blood pressure. Hypotension refers too low blood pressure. Orthostatic is a medical adjective that indicates a condition relating to or caused by an upright posture. Orthostatic hypotension is a condition in which your blood pressure falls significantly when you stand up quickly.
This was my first time attending the World Parkinson Congress. I suppose that is understandable considering that the congress is held every 3 years, and it has only been 2-1/2 years since my diagnosis. Prior to that, PD was not on my radar. As a congress newbie PwP, I thought I would share a few of my thoughts and “take-aways” from the congress, in no particular order of importance or relevance.