2023

Four-ward

If you've been following my story since my initial announcement in April 2019 that I am living with Young Onset Parkinson's Disease, you might recall that April is Parkinson's Awareness Month. Every year I use this time to give you all an unedited, raw, and honest report on how I'm doing, and every year I ask you all to donate money to find a cure. Well, they still haven't found a cure, so let's do this thing again, shall we?

For the better part of the year since my last update, I've been doctorless. When my last neurologist left the practice it took me months to be seen by a new one at a different hospital. When I finally was seen, it was such a bad experience I walked away thinking I'd have to turn to alternative medicine or resort to nontraditional treatments if it meant I never had to set foot in there again.

Luckily, I knew a guy. 

A good friend from my childhood came back into my life after losing touch for several years. He just so happens to work at one of the best hospitals in the country so I asked if maybe he could get me in to see a doctor, any doctor. Well, he didn't find me just any doctor. He got me in to see someone whose credentials might be considered "too much" if they were a fictional doctor on TV; a Harvard Med graduate turned Harvard Med professor with a Ph.D. from MIT, she's done TED talks, been the subject of an Academy Award-nominated documentary and a five-part Radiotopia podcast, she's even written a freakin' book about creative mania - one of the truly odd symptoms I've experienced on my journey with PD. 

You might think that someone this smart might be lacking in other areas such as social skills or bedside manners. Contrary to that assumption, I've never encountered a doctor more interested in the patient (me). She quotes literature and philosophers in her appointment notes and even took the time to listen to some of my music as a way to measure my mental health. We email regularly as she makes tweaks to my dosage schedule.

Why am I spending so much time bragging about my amazing new doctor? Because it's a reminder that it's never over. You never know when things can turn around for the better. That's a message I think we all could benefit from being reminded of. 

When I started seeing her, I complained that my meds were making me feel like I was crawling out of my skin when I was coming down off of them, spastic and fidgety, unable to control my movement. I was sleeping a total of 3-4 hours a night. I had creative OCD. I was finding myself getting anxious in routine situations. I told her that my old docs kept pressing DBS (Deep Brain Stimulation = brain surgery) as the next viable treatment option, to which she responded with an eye roll and scoffed, "Pffft, we have so many other things to try before we have that conversation."

She's since changed up my meds completely. While my dexterity is pretty bad and I'm still unable to write legibly and my hand trembles slightly, she's addressed virtually all the aforementioned previous symptoms. I'm still able to hide my PD really well, possibly better than ever. When people ask me how I'm doing, I kind of surprise myself every time I find myself responding, "Really good, actually!"

Of course, there's no way of knowing how long I'll feel this way. Since Parkinson's is different for everyone, no one can tell me when things will inevitably get worse. It's a given. There are good days and bad days (and really bad days) and every bad day is a battle with the thought that this might be the new normal. If I somehow miss a dose, the lack of dopamine immediately sends me down in the dumps into an insta-depression. Basically, it's a weight. 

But all things considered, for now, I'm doing pretty damn well. After a long hiatus, I'm starting to get the itch to exercise again, to get some miles on the bike, run a 5k here and there, etc. That motivation has been missing for a long time so it's good to see this spark inside me return. I can honestly say that I didn't expect to be here right now. This is all thanks to the power of medicine & science harnessed by a skilled doctor, of course. The money we fundraise every year goes directly towards furthering this science and research in the hopes that a cure is just over the horizon. 

Jocelyn and I just returned from a weekend in NYC where we were guests at the Michael J. Fox Foundation's MVP celebration. The people in attendance were responsible for a staggering $11 million raised in 2022. It was an honor to be included with so many incredible people doing whatever they can to raise money for Parkinson's research. We left the city inspired to continue our fundraising efforts and bring an end to this disease. And so we press on. I want to thank each and every one of you who has donated in the past (many of you multiple times). The money you donate IS making a difference. Later this month MJFF is going to share publicly some news that could change everything. The hope and optimism is palpable. We are so close.

So what are we doing this year?

Unfortunately, due to a scheduling conflict, we are not going to be able to do the New England Parkinson's Ride in Maine this year. We will, however, "Cycle in Sync." Stay tuned for details about our own group ride here in Western Massachusetts later this summer. 

We also will be hosting the 2nd Annual Pickleball for Parkinson's Disease Tournament at Borgati Park in Agawam, MA on Saturday, May 20th at 8 am. Registration and more details can be found at www.pb4pd.com.

And of course, we're still hiking a lot. As a reminder, in 2017 Jocelyn and I decided to hike every trail in Acadia National Park (roughly 140 miles worth). We figured we'd pick away at this goal over each of our annual family vacations up there every summer. But two and a half years later when I was diagnosed with PD, this goal became more urgent and so we escalated our efforts. We're hoping we'll achieve our goal this summer if all goes according to plan!

So, remember: when you give through my fundraising page, 100 percent of your donation will go straight to MJFF's research efforts to speed a cure for Parkinson's disease and improve the lives of those living with PD today. Thank you so much for your support. Please feel free to send this page to any friends or family members who might be interested in donating. 

LFG