My Journey

Hi. I’m David. I’m the Gen X’er, Top Gun fan who was faced with the very real possibility of losing my voice who undertook the journey to build Talk to Me, Goose! Here’s a little bit about my story. This page will be the starting point of the place where I share about the app that we’ve built, about me, and about the journey that we’re on now that we’re dealing with motor neuron disease (and how we’re dealing with it), if you’re interested. I’ll share about our travels, our advocacy efforts, and our life when I have the chance.

A Little Bit About Me

I’m just a guy who spent his career working with health care organizations and leading teams to improve their ability to serve patients. I’m really a strategist, not a technologist, but I have always been fascinated by technology. I have dabbled a bit with computers, computer science, coding, algorithms, data analytics, and so forth but it was always out of curiosity and a desire to learn and be more conversant rather than to build things myself.

I’ve been an avid cyclist and someone who looks to do hard things simply because they are hard because I believe that we have gotten too used to being too comfortable all the time. We need to push ourselves sometimes to the limits of what we can do to reground ourselves. It’s humbling to struggle against something hard, and, in my opinion, it’s good to be humbled. So, whether it was riding across Britain in 9 days, climbing Mont Ventoux or the Col du Galibier, I relished the effort and the challenge. In retrospect, perhaps it was all in preparation for what lies ahead.

My Diagnosis

The beginning

At the beginning of 2024, I was excited. Coming off of my healthiest year yet, I had tackled what was arguably the hardest amateur cycling event in the world in 2023, the Haute Route Alps. I was looking forward to a lighter year focused on recovery and preparation for what I had hoped would be preparation for a big 2025 to take on the Pyrenees or some other as of yet to be determined challenge that had not been tackled. I had high hopes.

I was rehabbing from a shoulder surgery that had successfully repaired a long-standing torn rotator cuff, and things were looking up. But then, the strange health challenges started. What turned out to be most likely a viral infection had me seeing my physician on a way more regular basis than either of us ever intended, and I showed up one morning with the strangest sensation of twitching in my face and forehead. After a thorough neurological exam, she became concerned about something more insidious, and my journey began.

The darned twitching!

What began as sporadic twitching in my face spread to sporadic, then constant, twitching in my left arm and leg. I saw a series of neurologists whose concern ran the gamut all the way from “not at all” to “gravely concerned” yet nothing definitive was showing up in anything that was being tested. So, I continued on about my regular life preferring to hew towards the “not at all” end of the scale while also keeping the “gravely concerned” contingent always in my mind as the twitching continued to get more annoying and increasingly more aggressive.

I continued to ride my bicycle, and in September, with five friends, I completed the Ride Across Britain once again. We rode the approximately 1,000 miles from Land’s End to John O’Groats in Scotland over the course of nine cold and wet days, sleeping in tents and enjoying the beautiful landscapes that make up all that lies between. But, in the back of my mind, I knew that something was wrong with my body.

Something was off

When I got back to the states, I went on about my days until late October when my hands started not to work as well as they should, and I was experiencing cramping and fatigue in my arms and hands. When I started to slur my words (thankfully something only I was noticing), I knew that something was clearly going awry somewhere inside my brain. Having had difficulty getting taken fully seriously by the physicians that I had been seeing in my hometown, I sought out the care of the team at the world class Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital where I was grateful to be seen in early in December 2024.

The physician team there was fantastic, and they performed one of the most thorough examinations that I had received in the entire year. And, that examination revealed that what I had sensed in the back of my mind during the Ride Across Britain was, indeed, happening. Something was wrong with my body and my brain. The connections between my brain and my muscles were starting to fray, so to speak, and the early stages of motor neuron disease were becoming evident.

So, now what?

What does one do now? Right? I have been very fortunate to have had a successful career leading amazing teams to do some incredible things with phenomenal clients. And, this has allowed me the opportunity now to make some choices. So, I decided in December to choose to take some time off to spend time with my wife to travel and to work on some things that are important to me personally. And, that’s what has brought about this work now. So, I will continue to write about these things on this page and to share a little bit about what is happening with me here, what I’m working on, and what’s important to me.

I’ll share about our travels, my advocacy efforts, and I’ll share about the application that we’re building for people like me who one day will no doubt need some help (a Wingman, my “Goose”) to communicate with the world. I’d be honored if you want to follow along. This won’t be perfect, or even maybe all that interesting at times, but it will be from me.