In this very silly photo of me and my friend-since-forever-and-ever, Summer, I did not know. It was July 4th weekend, 2006, and just three months prior, I started to feel a tiny spasm in my right hand – between my thumb and my forefinger.
In the image I’ve posted of me and my mom at the beach, I did not know. It was Christmas of the same year, 2006.
About two weeks after that photograph was taken, my parents came to visit me in Washington, DC. My mom and I got up before dawn and took a taxi to the National Institutes of Health, where I underwent a four-hour series of tests. Some silly, some humiliating, some just annoying.
And then a doctor – a woman who couldn’t have been much older than I was at the time, 34 years old – sat me down in a tiny little room, gave a funny little sigh and said, “Well, it looks like you have Parkinson’s.”
Just like that.
I am approaching my eight-year “anniversary” with this disease, and I’ve been actively fundraising this entire time, to support research and treatments that will make my Parkinson’s easier to manage.
What I have realized is that however important the research and “cure” (I say it with air quotes because I don’t see it as a real possibility in my lifetime) for Parkinson’s are, so is managing the day-to-day of this disease.
That’s how I got involved with the Parkinson Foundation of the National Capital Area. Yes, it’s a mouthful – and if I use its acronym, PFNCA, not many people know what I’m talking about. But those who do, know how vital it is to their lives and to their every day functionality.
The money I am trying to raise – through the sale of my photographs – stays local. It helps people in the so-called National Capital Area (Maryland, DC, and Virginia) manage their Parkinson’s by providing dance classes, exercise classes, speech classes, and support groups….at NO CHARGE. Free to attend, free to participate, free to get the support they need when they’re paying so much for medication, treatment, doctors, diet, you name it.
I’ll continue to do the Unity Walk in Central Park each year, because the money I raise for that organization goes to supporting the big guns – Michael J. Fox Foundation, National Parkinson Foundation, etc. We need that research. We need better treatment. We need a cure.
But on a daily basis? I feel compelled to help the PFNCA. If I sell enough of my photographs to support a $100 contribution, that means 10 people can take a dance class at no cost to them. If I can shell out $200, maybe we can spring for another support group in an area we haven’t covered yet.
Life before the pictures attached to this post doesn’t really exist anymore. But the rich life I’ve lived since is because of the people who have supported me every day, whether grim or glorious. Everybody deserves that kind of community – Parkinson’s patients and their caregivers alike. Until a cure comes along, that community is better than any medicine!
(Okay, not any medicine, but most medicine. Especially the stuff I take. And no side effects from free dance classes! Except you feel more limber. And maybe you can touch your toes. You might freeze in that position, but you’re finally touching them!)