I joined the Parkinson’s Action Network as an Assistant Director for Washington State a few months back. I figured it would be one place where my unpredictable body wouldn’t be too much of a concern.
I had tremendous momentum initially and my efforts led my congressman, Representative Dan Newhouse, to join the Congressional Caucus on Parkinson’s Disease. Unfortunately, PAN was going through some transitions at the top right as I joined so I never recieved the guidance needed to ensure my momentum was sustainable. I also have yet to really connect with my fellow Washington grassroots leaders, although not for a lack of trying. I had an email exchange with the director that left me feeling dismissed and frustrated. He didn’t seem interested in what I could do for PAN while I was waiting to have surgery, which was exactly what I didn’t need at the time.
Now I’m not trying to dog on my fellow grassroots leaders. They may be significantly busier than I am, more limited by their disease (if they are PD patients) or any number of other reasons. I sincerely hope that I’m able to work with them productively in the future, but I found myself at a crossroads: I would either find someone to take me under their wing or I wouldn’t be involved with PAN for much longer.
So I reached out to someone in Massachusetts. He shared his story of how he got involved with PAN in Massachussetes and how their team works together to make things happen. He’s taking me under his wing, and connecting me with other members of PAN who will be willing to do the same. I left my conversation with him feeling recharged and motivated to have good news to report when we spoke again in a week (we’re planning to speak on a weekly basis).
I’ve been meaning to get more involved with the local support group for some time, but today I made it my number one priority. My disease is very different as I’m the youngest by far, but I do get tremendous satisfaction from getting others involved in the fight against Parkinson’s. I’m happy to report that roughly a dozen people expressed interest in PAN. Sometimes the smallest steps can take you farther than you would ever expect.
Living with Parkinson’s is a constant struggle for momentum, and I have to say that it feels good to know that I’m moving in the right direction with DBS (hopefully) right around the corner.
