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How Could I Be So Wrong?

Tuesday August 26, 2014

It’s hard to avoid a bit of hysteria on being diagnosed with Parkinson’s Disease. To be scientifically rational and ruthlessly objective is hard even under the best circumstances. Nobody would confuse a PD diagnosis with the best of circumstances. One could even argue a little hysteria is an under-reaction to news of being stalked by a disorder that relentlessly hollows out those it afflicts until death.

vitamins


The grimmest part? You are helpless to stop it. How can this be?  In our present days of miracle and wonder, we carry little magic tablets that can conjure images of loved ones and allow interaction from a continent away. We travel thousands of miles in a few hours, watching the clouds from above. We even return from death regularly in emergency rooms across the World, relieved, grateful, but not especially surprised. The fact that, in the midst of this everyday sorcery, we somehow forgot to cure Parkinson’s Disease seems almost negligent.

Talk about pent up demand! After all these years, we are eager to embrace whatever holds the promise of curing, or at least slowing the inexorable progression of this disease. So recent news that a phase three trial of CoQ10 came up empty was disappointing.

But not to me. I was already disillusioned with it.

I started out as a CoQ10 true believer, paying about three hundred bucks a month for what was billed as the high-quality stuff. It had a plausible story. People with PD have unusually low-levels of this naturally occurring substance, and there was reason to believe it could help fortify our mitochondria, tiny “batteries” that power us at the cellular level. This, theoretically, could help ward off brain cell death. I bought it. Literally.

And darned if it didn’t seem to work! I brimmed with new energy after I started the stuff. My sensation of an infusion of pep was confirmed by my wife, who saw a dramatic change for the better. Booyah, PD! Take that!

A little more research and thousands of dollars later, I decided to kick the CoQ10 habit. When I stopped cold turkey, my energy level went unchanged. In fact, the only detectable difference post CoQ10 was my chagrin and anger at having forked over so much money over so much time for something that now seemed to lack any benefit. How could I be so wrong?

Here is how: The placebo effect. This is a term for the phenomenon that people will sometimes feel better with treatment, even if there is no real benefit to be found in said treatment. Thus many people who think they are getting real medicine when they actually get only sugar pills, nevertheless feel better. Crazy, eh?

Yep. But wait. We have a disease that, at present, nothing (except probably exercise) seems able to halt or slow. And we have my initial response, confirmed by my wife, of symptomatic improvement.  What is Parkinson’s Disease beyond the symptoms? To put it another way, if you had none of the symptoms, would it matter to you that you have something called “Parkinson’s Disease?” My suspicion is that you wouldn’t really care.

So I’m not angry any more about falling for the feeling CoQ10 improved me, even though it seems clear in retrospect it was just the placebo effect at work. Given that nothing had been shown to do the job, who am I to sneer at placebo relief?

 Now I’m just mad I paid for top-quality placebo, when cheap placebo might have done just as well.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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