"My PD Community" As I scroll through my Facebook list of friends, I take great pride in the diversity of people that have been gracious enough to allow me to add them to that group. Although the majority are old friends and family, a growing portion is made up of my Parkinson’s community. This impressive group is made up of people of differing backgrounds, a spectrum of age, ethnicity, vocation and geographic location. Everyone from a former NBA star to physicians, lawyers to artists, and everything in between. Some I’ve met through attending Parkinson’s related events, some through online support groups and still others through my work with different Parkinson’s organizations. Yet despite the differences, we share something very important - our life experience with this disease.
My initiation into this illustrious group came when I attended my first Michael J. Fox Foundation annual fundraising gala in New York City. It was here that I gained enough confidence to “come out” publicly with my YOPD, almost a decade after my initial diagnosis. It was here that I found the courage to lean over to the person sitting next to me at dinner and say “I too have Parkinson’s Disease”. That confession was met by the kind eyes of Bill Wilkins whose smiling response I will never forget “Welcome to the club! It’s a very exclusive group you know. We don’t just let anyone in!”. Bill is several years my senior and without a doubt much wiser, someone whose path would normally not have crossed mine. Yet although we differ in many ways, I count him as one of my dearest friends and a life mentor. It was Parkinson’s Disease that brought us together and for that I am forever grateful.
And it is with this gratitude that I regard all of these kindred relationships that I have developed over the years. (I contemplated mentioning each individually as they have all come to mean so much to me but there are so many that I fear I would unintentionally forget to recognize someone.) There is a special bond that develops when you meet someone who is facing the same daily challenges as you. Someone that needs no drawn out explanation of how you are feeling physically, that understands the spectrum of emotions that you experience on this journey; someone that “gets you”. Because as good intentioned and supportive as those around you may be, they cannot truly understand what this pervasive and progressive challenge is like. They can’t possibly comprehend what it feels like to gradually lose control over your body and the intense daily struggle we fight to regain that control. The battle we wage in our hearts and minds as we come to terms with all that this disease has unabashedly taken from us, will remain elusive to them. And how we all try in our own ways to maintain an almost delirious optimism, they may admire but will never be able to relate to. Please don’t misunderstand - I could not make it through this without the support of all my family and friends but when I need someone who I know will instinctually understand, I turn to those in my Parkinson’s circle.
Once I emerged from a decade of denial and self-imposed isolation, I have been able to share my most private experiences and thoughts, my fears and victories with these friends. I’ve always enjoyed close friendships but these bonds are truly different. Kinship and loyalty develop almost instantaneously, skipping altogether the formal “niceities” which are a general prelude to all relationships. We find ourselves open and vulnerable with virtual strangers because of an unspoken trust that we have in each other - an unspoken promise to weather this storm together, to be with each other through this experience.
It is this group of people that band together to support each other through the daily struggles and life changing moments alike. They are there for practical advice on issues rarely touched upon by medical advisors and a virtual shoulder to lean on when we mourn the little unyielding losses that are a constant reminder of our condition. We cry together and laugh with as much fervor. I need only pick up the phone or go online when I feel panic set in or I am overwhelmed by the onslaught of this disease. And it is with this group of special people, my Parkinson’s family, that I will mark that day in our not so distant future, when we hear about the breakthrough we’re all working towards - the day they find our cure. And what a celebration that will be!
Most fundamentally, participating in this marathon really served to confirm what I have always believed - that proactivity is a key component…