Clinical trials for Parkinson’s: What’s in it for you?

Want a cure for Parkinson’s disease? Better treatment of symptoms? Or – dare I say it – something that will reverse this neurological disaster afflicting 8 million people?

If so, there just might be a clinical trial awaiting your name.

I learned about them early on. In fact, I had been officially diagnosed only about 45 minutes when I was handed a flier about a clinical trial for Parkinson’s medications that I could consider.

Yowza! It was a lot to take in. After coming to terms with my new future, I agreed to give the trial a try.

Since then, other studies have had me get zapped with electrical impulses, eat “prebiotic” granola-type bars daily, and properly ship a stool sample via Fed Ex – all in the name of progress! 

And what’s there to show for it? Read on.

Clinical trials I’ve joined

Some trials will be done in a couple of hours. Others take weeks, even a year. The longest Parkinson’s clinical trial I entered was soon after I was diagnosed but before I started taking any medications.

That first study lasted three months and was a double-blind controlled test of certain drug combos. 

I’m guessing I was in the control group taking placebos, because I didn’t notice much relief from tremors. Any relief I did feel may have actually been a “placebo effect.” I’ll never know.

That’s part of the deal — you have to accept that you may not receive your own personal results from the trials.

Some studies do allow you to see results, like the one where I was tested to see if I had one of a dozen “Parkinson’s genes.” This biomarker study was simple – just a blood draw. Afterward, I received a PDF with the results and a follow-up call with a very nice geneticist who used lots of big words to explain those results.

The most interesting study I joined was designed to measure the effect of electrical stimulation against tremor (photo above). It involved a hospital gown, two MRI’s, 40 minutes of electrical stimulation of my tremorous right arm, and testing that included drawing spirals on paper and pouring water into a cup.

The poop study was to check how well people with Parkinson’s can tolerate adjustments in diet to alter bacteria in the gut. I was told to eat prebiotic bars, made just for the study using scrumptious  ingredients like wheat germ and date paste. 

They weren’t really that bad, but eating two a day filled me up so much that I wasn’t hungry for lunch or dinner. 

It was through this study that I learned the fine art of collecting a stool sample at home using specialized high-tech instruments, shown here.

So what’s there to gain?

Admittedly, I may have deterred you more than encouraged you to join a study. But not all of them are this involved, and there are genuine benefits. Besides the satisfaction of knowing your contribution might alleviate human suffering, clinical trials for Parkinson’s are how we get new treatments, better medications, and perhaps someday a cure.

Some trials pay a small stipend. But that’s not why I do them. I want to be helpful, as other volunteers have been to me.

The way I see it, clinical trials are a low-risk way to donate your body to science before you’re six feet under. 

How to find a study

If you’re interested, start by checking trusted sources like the Michael J. Fox Foundation, the Parkinson’s Foundation, ClinicalTrials.gov, or a research hospital near you. 

Talk with your doctor about what might be a good fit for you. And once you’re in this exclusive club, you may even want to keep coming back.

Sign up only for what feels comfortable – if you’re not up for wearing a brain-monitoring cap while observing goat races on YouTube videos, you can take a pass. (I said no to a study requiring a spinal tap. I have my limits!)

Clinical trials are a vital part of the Parkinson’s puzzle, and regular people like you and me are needed to help make progress happen.

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What are some clinical trials you’ve done? Jot a note about them in the comments, or email me with your story.