30 Days of Parkinson’s: Exploring Clinical Trials Has Given Me Purpose

Photo courtesy of Joseph P. O’Connor

Day 5 of 30

This is Joseph P. O’Connor’s story:

After I was diagnosed in late 2016, I realized I had to find something that would give my life a purpose. I found that through clinical trials. I could learn about my disease and help improve the lives of my fellow “Parkies” by participating in these trials. 

I had read about the Fox Foundation’s clinical trial finder and decided to give it a try. Surprisingly, I got into the first trial that I applied for! After applying for more trials, I figured out that I broadly fit into three groups.

The first group consists of observational trials and they involve one or more tech devices to monitor me. For example, one trial involved me using an iPhone and iWatch to record my mobility. 

The second group of trials is the intervention trials. These involve new medications or re-packaging of current medications. These are pretty straightforward: you either get the real stuff or the placebo.

But the third set is the really interesting one. These are conducted by doctors and involve the clever use of existing technology (this technology is rarely, if ever, intended for Parkinson’s). 

Here are two examples of these trials. The first involves imaging and training yourself through the use of an MRI, practicing the activity and re-learning it, and then applying the imagery to the real situation. For example, I used to swim distances and compete, but Parkinson’s had robbed me of my once-powerful swimming stroke. After doing the trial, I jumped into my pool and found I could swim a perfect crawl stroke!

The second example was a trial about sleep and Parkinson’s, and this trial involved two short hospital visits and the use of a SAD lamp, a lamp for seasonal affective disorder. The experience changed my defective sleep to a much better situation which I still enjoy to this day.

The hospital stays reinforced a point I want to make. When you are on a clinical trial, you are treated like royalty and you can always back out at any time. I have done, at the time of this writing, 32 clinical trials and I encourage other Parkies to try to do as many as they can. If we Parkies don’t do these trials, we will never find a cure.

Parkinson’s News Today’s 30 Days of Parkinson’s campaign will publish one story per day for Parkinson’s Awareness Month in April. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPAR, or go here to see the full series.