2019
Why me? Why not.
In January, I received some news that would change my life. I have Parkinson’s Disease.
In hindsight, I was probably inadvertently overlooking early symptoms of the disease. Like when my right arm stopped swinging naturally when I walked or when my handwriting started becoming illegible or when the dominant side of my body started feeling weaker than my non-dominant side. Afterall, I’m a healthy, active 36-year old. There was no reason to think something serious might be going on. It was when my hand started tremoring that I eventually went to my doctor. After weeks of anticipation punctuated by bloodwork, an EMG nerve conduction test and an MRI of my brain, I was eventually diagnosed with early-onset Parkinson’s Disease. An estimated 5 million people worldwide have Parkinson's and an estimated 60,000 new cases in the United States alone will be diagnosed this year. Some sources say only about 10% of those diagnosed are early-onset (i.e. under the age of 50), like me.
Parkinson’s is a clinical diagnosis meaning it doesn’t show up in bloodwork or a scan of your brain. A neurologist asks a lot of questions and has you do a bunch of tests in order to determine whether or not you have the disease. It’s more commonly found in people that have a family history of PD, have had significant head trauma or were exposed to chemicals. The mystery here is that I have no family history of the disease, no previous head trauma, and no exposure to chemicals. My doctors even ran a genetic panel and found no gene mutations that would make me susceptible to the disease. It’s “idiopathic,” as they say - “relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown.” In other words, just lucky, I guess.
But that’s the thing. I am lucky. Despite the fact that there is no cure and that there’s no way to know how my symptoms will progress since the disease is different for everyone, this diagnosis has caused me to realize just how lucky I am to be surrounded by such an incredible support system of family, friends, colleagues, coworkers, and clients, and even how fortunate I am to live in a region that gives me access to some of the best medical facilities in the country.
Earlier, I said this news had changed my life. It has. It’s helped me see the silver linings.
Everyone has a burden to bear in life. Big or small, we all have something to carry. Don’t get me wrong. The uncertainty of this disease is big and scary and I’d be lying if I said I was at peace with the news right away. Simple tasks like buttoning my shirt, finding something in my pocket, even brushing my teeth have become challenging. But this is not a death sentence. There’s a chance I could have gone years without anyone noticing my symptoms. Instead, I’m sharing my story now - not for your pity or your sympathy, but because if this is my new reality, I’m going to own it instead of it owning me. I’ve decided to turn this negative into a positive and to use it to propel me to carpe that diem, to accelerate the bucket list and, last but not least, do whatever I can to help find a cure.
The 12th annual New England Parkinson's Ride is on Saturday, September 7, 2019 where over 1,000 cyclists will gather to help pedal closer to a cure. It’s a two-fer for me: raise money for PD research and get to check off a bucket list item - participate in a bike race. I’m registered for the 50-mile course but may go for the 100-mile if training goes well this spring and summer.
Team Fox is the grassroots community fundraising program at The Michael J. Fox Foundation for Parkinson’s Research (MJFF). MJFF accelerates high-impact science through smart risk-taking and problem-solving with a commitment to urgency and efficiency. I’m one of thousands of people around the globe who are turning their passions into Team Fox fundraisers to help them speed a cure for Parkinson’s.
Please consider making a donation that will directly go towards continued research. When you give today, 100 PERCENT OF TEAM FOX PROCEEDS GO STRAIGHT TO MJFF'S PROGRAMMATIC EFFORTS. Or, if you’re so inclined, join our team “Silver Linings” and ride with us! Even our girls (ages 5 and 8) will be doing the 10-mile ride - how awesome is that!?
If you’ve read this far, I sincerely appreciate your concern. All that positivity I wrote about earlier is not idealistic spin or trying to trick myself. I’m genuinely doing really good. Thankfully my symptoms are somewhat moderate for now and my consistent regimen of medication, exercise and meditation appears to have had a positive impact on the progression of new or worsening symptoms. This glass is half-full. Silver linings abound. I’ve got this.
I hope you’ll consider donating to help our team reach our goal and I sincerely thank you for all your love and support.
David