Volunteering for clinical research can be a critical part of any treatment process, regardless of condition. Parkinson’s Disease is no different in how those, who live with Parkinson’s, are benefitting from the work being done to understand and treat this disease in the near future.
John Humphries has lived with Parkinson’s for more than 13 years. The moment he was diagnosed, necessity prompted him to find out how to get involved with the movement.
We live with hope when we have Parkinson’s, and this gives me hope every day.
“I got involved with clinical trials because I had lost my job and I didn’t have insurance,” Humphries admitted. “So I talked to a social worker and she suggested to do clinical because you could get more exams from a movement disorder specialist at a teaching hospital than you could ever imagine.”
When actual patients get involved with participating in clinical research, it has direct benefits in both treatments and knowledge.
“I do it mainly because it keeps you really abreast of what’s going on,” he explains. “And then to be honest, we live with hope when we have Parkinson’s, and this gives me hope every day.”
While it can be encouraging to dive head first into the clinical trial waters, it is better to evaluate your condition and the parameters around the trial before committing. Knowing yourself, your medical history, and having real talks with your physician about what is best for you is key.
John offers this insight for those seeking more information, support, and activities to consider when living with Parkinson’s:
“I just really network and find out the clinical trials that are in the area that I might be interested in and talk to different people,” he advises. “I think with your clinical trials goes along with your advocacy. Just do something. Don’t sit on Facebook, do something.”
Not all trials are created equal and if something doesn’t feel right, there’s nothing wrong with respectfully bowing out of a trail that isn’t a good fit. In keeping with John’s transparency, his final thoughts on the matter are simple:
“I was having problems with hallucinations for a trial. But then there were some that we would just work our way through because we could see the advantages of it,” John reveals. “I just think that everybody needs to get involved. Because it’s different for everybody, how they’re going to have to respond in doing a clinical trial. It’s something they have to feel comfortable with.”
