2024
Back in the Saddle: 5 Years In
Hello again, friends. For 363 days a year, I try to live my life as though I don't have Parkinson's disease - that I'm not going to let it physically slow me down or, mentally, get me down. Those other two days of the year are when I acknowledge my diagnosis and accept it - the day I participate in the New England Parkinson's Ride and the day I write this typically long-winded annual update to all of you.
This past year consisted of many challenges and changes for me. One significant evolution was leaving my job after 17 years, starting my own company, and then taking a new job in an exciting role at one of the most respected companies in the toy and game industry. Although working remotely has had its challenges (one being that I hate working remotely), I couldn't be happier with my decision. It has, however, put me in a position where I'm working with people unaware of my condition. As of this posting, many of my coworkers don't know about my diagnosis. I've come to realize that this has subconsciously heightened my self-awareness, causing anxiety about whether I'm hiding my symptoms or that I might be thought less of. Honestly, as I'm writing this post it's occurring to me I need to rip the bandaid off and just get it out there so that I don't have to worry about whether my symptoms are on display or if my coworkers think something's wrong with me. (Eventually, I'm sure I will tell them and will share this link so if you're reading, hello Opsters!)
The fact of the matter is that there is something wrong with me and until there's a cure, my best hope is that the medication continues to work as well as it has the last five years since I was diagnosed. I'm on a new cocktail of fancy drugs now and my neurologist continues to amaze me and give me hope in both humanity and science. The new medications have leveled out the constant dopamine peaks and crashes I felt throughout the day in previous years and the OCD urges I felt before which compelled me to write and record five albums in one year (hashtag now streaming everywhere) are now a thing of the past (additional creative endeavors can be found here). And though I admit I do miss the creative outlet and I'm still not sleeping as well as I would like to be, it is still a marked improvement over the unhealthy routine I fell into the last couple of years.
What's interesting about Parkinson's Disease is how much you can't see. I've mentioned in past updates that hand tremors, limb rigidity, and loss of dexterity & motor skills are present but concealable. I'm talking about the stuff in my head like the OCD urges and these new anxiety issues that are either due to the disease itself or a side effect of the medication I'm on to combat it.
They also say that people living with PD may be at an increased risk of developing severe illness and infections, something I learned firsthand this past Father's Day (2023) when my wife rushed me to the ER. I ended up spending four days in the hospital fighting an intestinal infection that truly could have killed me if I ignored it any longer. So that was fun. I was discharged with another new condition that I'll have for the rest of my life but, again, it's manageable with the right drugs so I'll be fine. Don't worry - I won't be raising any funds for that one ;)
Regardless of what's occurring inside me, I'm grateful to be physically able to break out my beloved road bike and log some miles this summer in preparation for our fifth New England Parkinson's Ride. The ride's founders have become like family to us and we can't wait to be back in Old Orchard Beach this September. If you and your family want to join Team Silver Linings and ride with us or "cycle in sync" remotely, feel free to reach out. We'd love to have you ride with us. Jocelyn and I will attempt the metric century ride (62 miles) while the kids will ride the 10-miler.
We'll also return to Acadia this summer as we do every year. You might remember that last year our family achieved our goal of hiking every trail in the park which was around 140 miles. We even got a shout-out in Downeast Magazine for the feat. This year, I've decided to bike all 45 miles of gravel carriage roads in the park. I know... so obvious. Joce said she will join me for at least some of the rides, not sure yet about the girls. I feel like enough has been asked of them already.
Finally, we'll also be holding our third annual Pickleball for Parkinson's tournament this July 20th at Borgati Park in Agawam, MA. This event was organized by my dad who has fallen in love with the sport and has contributed nearly $10,000 towards the more than $100,000 we've raised for the Michael J Fox Foundation since my diagnosis. If you would like to play in the tournament, you can visit PB4PD.com for more information. Registration is open now and spots are limited.
However, what's needed most is your donation to fund additional research to find a cure for Parkinson's. Your donation is not just for me but for everyone battling this disease. That's nearly a million in the US alone. If you know anyone who has fought Parkinson's disease you may already know that it affects everyone differently. I'm fortunate to be in a position where I am physically able to be active and do what I can to combat its progression. Others struggle with physical limitations far worse than mine. 100% of the money raised goes to the Michael J. Fox Foundation which is the leading nonprofit for Parkinson's whose sole mission is to find a cure through research and government action.
Because of donations from people like you, here are just a few of the notable and promising ways the MJFF is plowing forward:
- Researchers and scientists are finding a way to identify the Parkinson's biomarker in saliva or regular blood draw without a spinal tap which is currently the only method.
- Clinics are working on new delivery methods for effective, targeted treatments that will alleviate the current round-the-clock pill taking and promise more effective targeting of symptoms.
- Congress JUST passed the National Plan to End Parkinson's Act which unites the government in an effort to find a cure.
These are all a big f'n deal!
So anyway, that's what's new with me. I'm still using this diagnosis to propel me to take a "YOLO" approach to life and carpe that diem. Just in the last year, our family explored our 2nd Hawaiian island and I've ticked another 3 states and 7 National Parks off my bucket list (bringing my totals to 37 and 17, respectively). We've got an aggressive summer bucket list ahead of us and are looking forward to making the most of our time together. You can enjoy pics from our family's adventures here knowing we aren't taking any of these experiences for granted.
A special thanks to everyone who has continued to support me on this journey. I remain eternally grateful for your generosity and friendship and will continue to live my life to the fullest as long as I am able. LFG!