Researchers hate the placebo effect, but for many of us with Parkinson’s, placebos help get us through the day.
Maybe it’s a vitamin & supplement regimen, or your diet. Maybe there are foods you will or will not eat at particular times of the day. Maybe it’s your art or music. Maybe it’s your exercise routine. Maybe it’s your bicycle. Maybe it’s swimming. Maybe it’s dancing. Maybe it’s meditation. Maybe it’s neurofeedback. Maybe it’s yoga or tai chi. Maybe it’s a sport. Maybe it’s table tennis. Maybe it’s poetry. Maybe it’s your gun therapy. Maybe it’s a red light bucket on your head. Maybe it’s volunteer work. Maybe it’s trainspotting, planespotting, cranespotting, drainspotting or brainspotting. (I didn’t even know that was a thing!) Maybe it’s social media. Maybe it’s anti-social media. Maybe you’re a smart ass, and you think a serious research effort exploring inflamed monkey bowels is a reason to talk about Anti Monkey Butt Powder. (Sorry, but sarcasm and snark are part of my Parkinson’s therapy, so don’t question my placebo, it seems to be working.)
But seriously, placebos and the placebo effect are a fascinating phenomenon that is particularly relevant to Parkinson’s Disease. Placebos aren’t just in research studies, they are all around us. And personally, I think that understanding how and why they affect us gives us the opportunity to create our own placebo effects.
From the first time I read about it, I’ve been fascinated by the placebo effect. The placebo effect is a big challenge in clinical trials for a new drug or treatment. In these so-called double blind studies, there is one group of patients 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.
A big part of the problem in trials related to Parkinson’s Disease is that there are significant numbers of individuals that see improvement during these tests as part of the placebo group. This has fascinated me. I’ve wanted to understand this better, so that I can create my own placebo effect.
I created a presentation video to explain why dopamine’s significance in Parkinson’s Disease invites the placebo effect and offer some suggestions how people with Parkinson’s can leverage this to create placebo effects.