Foundation friend and person with Parkinson's Bret Parker wrote a poignant blog post for Elsevier Connect about how participating in trials has given him both hope and a sense of control over his health. Read our excerpt below and view the full story on Elsevier Connect.
When I was diagnosed with Parkinson’s Disease at age 38, l felt that I had lost control over my fate. Before that moment, I could pretty much set my sights on any goal and know that with hard work, I would accomplish it. Having a type-A personality and being a lawyer, for me life had been a series of plans all executed on schedule.
Getting the news that I had a disease that still lacked a cure meant that my health was largely out of my hands. It was completely frustrating. I quickly realized that there was one thing I could do to make a difference potentially for myself but certainly for the millions of other patients with Parkinson’s – participate in clinical trials to try to find better treatments and a cure.
Around the world, 40 percent to 70 percent of clinical trials face delays because they cannot recruit enough volunteers, including healthy patients to serve as controls. I wasn’t even sure how to get involved, but luckily The Michael J. Fox Foundation created Fox Trial Finder, which allows people to sign up and get information on trials that meet the criteria they set. I logged on and set the parameters for what I wanted.
As a young Parkinson’s patient, I wasn’t eligible for certain trials. And because my symptoms are still in the early stages, I’m not yet interested in trying experimental drugs. I began looking for observational clinical trials in which researchers observe participants by monitoring their health over a period of time. These studies provide researchers with data that advances our understanding of Parkinson’s and how to treat the disease. By participating in trials, I regained a sense control over my health and found many reasons to be hopeful for better treatments and ultimately a cure.
From wearing a smartwatch to lifting heavy objects to donating blood, Bret describes all types of PD clinical trials that need volunteers. Read more at Elsevier Connect about the types of trials and sign up for Fox Trial Finder today.
Already registered on Fox Trial Finder? Sign in to review your custom list of trials in your area that need you.