A few basic facts that we should get out of the way:
Now that we’re all caught up, the challenge of being diagnosed so young is that that there is no script to follow to reveal your condition. Somehow in my mind, I could imagine saying, "Dad, I have cancer." Or "Mom, the tests have revealed my deepest worry: I have male pattern baldness." But I never could conceptualize even initiating the conversation about PD. Given that I had no clue how to broach the topic, I decided to keep it hidden.
I do a lot of public speaking for my job and, at a certain point, my symptoms were becoming harder to hide. I was worried that if I was seen as “sick” that it would derail my career aspirations. There became a delicate dance between my need to keep PD a secret and that pesky right arm tremor that served as a visual reminder that something wasn’t right.
One afternoon, I was online researching innovative statistical analysis modeling (or reviewing my fantasy baseball team) and I came across Fox Trial Finder (MJFF’s online clinical trials matching tool, www.foxtrialfinder.org) and it all just clicked. Being diagnosed with PD was definitely a challenge, but by remaining silent I was doing nothing to help push the ball forward. And that behavior had to change.
That fall of 2011, I gave an interview with the school newspaper, The Ithacan, where I revealed my diagnosis and I braced for the fallout. There turned out to be only tremendous support and, in a surprising twist, I received many messages from individuals who also had PD and did not feel they could disclose it for a myriad of reasons. (Editor’s note: See the 2012 New York Times' Well Blog post, “The Burden of Secrecy,” for more on this topic.)
It may seem strange, but Fox Trial Finder helped me to understand my role in advocating for – and participating in – PD research before I even signed up for my first study. The work of The Michael J. Fox Foundation gives me hope and that, in turn, motivates me to volunteer in any way possible to assist in moving forward the research, funding, and awareness of Parkinson's disease.
I have a long life ahead of me and I have made the decision to get off the bench and into the game. And I have MJFF and Fox Trial Finder to thank for that. Now if they can only assist in fixing the Mets outfield, I would be a very happy guy.
Bryan M. Roberts can be contacted at BMRoberts04@gmail.com and followed on Twitter at @RobertsAtPark. You can read his blog, Stepping Forward: Life with Young Onset Parkinson's Disease, here: http://steppingforwardyopd.blogspot.com/