I had the pleasure of meeting Carol Walton, Chief Executive Officer of The Parkinson Alliance, at the Parkinson’s Action Network (PAN) Forum in Washington DC, this past week. Her organization is responsible for the Parkinson’s Unity Walk held each year in New York’s Central Park. [The Parkinson’s Unity Walk this year is scheduled for Saturday, April 27th.] She and I visited about the Forum sessions and a few other things, including my situation as a person with Young-Onset Parkinson’s Disease. Her comment, that was shared by several others during this trip, was that my disease progression seemed to be a slow one. I shared a bit of my story with her, and I’d like to share it in more detail in this post.
My Parkinson’s diagnosis six years ago (Feb. 21,2007) turned my life upside-down, never to be the same. Along with the depression that accompanied it, including dealing with being suicidal for about nine months during this ordeal, my focus for getting involved as an advocate came only after this very dark period in my life. I’ve previously mentioned that I was able to step out of the shadows of a deep depression when I started looking outward at how others were dealing with this disease, without the kind of support I was receiving from my family and friends. The days of looking inward and feeling sorry for myself would soon come to an end.
It was around this time that my focus as an advocate for Parkinson’s Disease awareness and education started. My whole focus was on letting people know about this disease that had moved in to my life and wasn’t leaving any time soon. My platform as an advocate has always included this and I feel it important enough to continue. My involvement with the Parkinson’s Disease Foundation as a Parkinson’s Advocate in Research (PAIR Program) dove-tailed quite nicely as I included, in my mission, to include the most people with Parkinson’s Disease (and without) in the clinical research process. My most used comment is that they can’t find a cure without us as equal partners in the process.
The more I travel and the more people I meet, a common thread that runs through our conversation is that I have very few visible symptoms and that they want to know what medications I’m on that allow me to continue working full time and also working on my lifes’ work as an advocate. My response includes the fact that I am incredibly blessed to have been able to seek the best quality medical care available that has allowed me to have the best quality of life possible for a person living with a neurodegenerative disease. So…having said that, my focus now includes talking about the importance of medical care that gives us a fighting chance to lead quality lives. As Dr. Jankovic mentioned the last time I visited with him, “I think we caught you at the perfect time, with the perfect combination of medications available, for the best results possible”. I’ll take that any day, but will also work at this so that many more people can have similar results as a result of their medical regimen.
The evolution of an advocate, specifically an advocate for Parkinson’s Disease awareness, education about the importance of clinical trial involvement, and the best quality of life possible through receiving the best quality medical care available, will ebb and flow slightly, but with the focus on the person living with Parkinson’s Disease, always. I fully realize that I can’t be everything to everybody because each person can only be as effective as their passions lead them, with the resources avaiable for them to work with on their journey.
“We cannot do great things on this Earth, only small things with great love.” Mother Teresa