Throughout this past week, there have been great, inspirational blogs from my fellow PPLV board members about getting involved and being active both for yourself and for your community. From Ruth’s powerful appeal about raising your voice and the need to vote Christian’s touching personal story of the challenge of voting as a Person with Parkinson’s (PWP) and his commitment to fight, regardless of the difficulty.
Yesterday, Martie wrote an excellent piece about the power of her community at Green Valley Rock Steady Boxing. They are a group of fighters who work harder than they imagined they still could, laugh and know they are safe, respected and loved.
I’m going to further those ideas of community and engagement with another kind of appeal of activity: clinical research. I’m a clinical trial recruiter at UNLV. I work with Dr. Poston and Dr. Landers on a number of projects, from telehealth studies in the rural communities in Nevada to Cerebellar transcranial direct current stimulation (c-TDCS) to Treat Parkinson’s Disease (don’t let the fancy title scare you - it’s small pulses of electricity put forth to measure the impact on the brain and, in particular, simple movements).
These studies, and scores of others across the U.S. and the rest of the world are our brightest hope for both a cure and what I’ll call “a stop”. Those two things are separate and one seems to hold tremendous hope, while the other may still be a ways away. The stop is the end of the progressive effects of PD. This would mean you have what you have, but, in theory, the symptoms wouldn’t get any worse. Most people I talk to with PD, including my dad, say that would be a Godsend because they’ve adapted to what they have. Many are thriving. The problem is when a new symptom pops up, without warning, many feel like they’re back to square one. It’s a death of a thousand cuts - frustrating, humiliating and depressing.
This is why a “stop” is so important. There are several articles that point to this possibilty that have been published over the last couple of years. I’ve linked a few of them in our research section. My advice is to read them with a healthy dose of skepticism, but not cynicism. Those who have or care for those with PD know there’s what’s in front of us, tangibly, usable today, and what we hope will be tomorrow.
So we strike that balance, focusing on what we can do: We can exercise. We can eat in ways that support our maximum health. We can connect with others, remembering and being reminded constantly that we’re better together.
We can also get involved with clinical trials. The work we do there paves the path, tangibly, for what we hope for tomorrow. If you have questions about some of the studies in our community that you can be involved with, please feel free to contact me at firstname.lastname@example.org.
written by Robert Cochrane