This was posed to me more as a thought-provoking question, as opposed to wanting to find out what activities I would find myself engaged in as a result of being able to lead a good quality of life, despite living with Parkinson’s Disease. The question did evoke some thoughts as to why, because the majority of my journey with Parkinson’s Disease has been focused on awareness, education, clinical trials, and the best quality of life possible as a result of the best medical care available.
One reason as to why I care is that I live with a vicious, relentless, incurable, neurodegenerative disease every single day and night. I was once asked if I ever forgot that I had Parkinson’s Disease. My response was that on a good day, I could “forget” about it for about four hours, until my tremors started up again, along with the muscle rigidity, and slow movement, and I was reminded that it was time for me to take the pills that would “mask” the symptoms for a few more hours.
Writing this post has been very difficult for me because I very seldom complain about the physical issues I deal with on a daily basis. I find it easier to say that I’m doing well most days because, at this point in my disease progression, my medication regimen allows for very decent days, which allow for a good quality of life, which allows for me to continue working, which allows for me to do what I can, while I still can, to make a difference in the lives of people living with Parkinson’s Disease.
There are days where I’m totally spent physically and mentally as a result of dealing with the symptoms, but I’ve often mentioned that my symptoms seem less bothersome when I think of what others are going through in their daily lives due to the debilitating effects of Parkinson’s Disease.
Why do I care? I care because we’ve all been called to be of service to others…
For me, being in the “public eye” as a person with Parkinson’s Disease requires me to take the good with the bad, as well as the small victories and bitter defeats when it comes to having the voice of the Parkinson’s community listened to in my work as an advocate. I learned a long time ago that there is a huge difference between “hearing” and “listening”. My focus is on being listened to, in order to get closer to better treatments, and ultimately, a cure.
I also have to constantly remind myself to not let “success in advocating” go to my head or the “failures in advocating” go to my heart.