Chapter 25: Look ma! No hands!
Still nursing his wounds, the main man gathers himself for one final push.
I received an iPhone activity report today. Usage over the last week was down 60%. That’s like a 5-hour a day drop off. There’s a good reason for that too. And it coincides with my increasingly lengthy gaps between social media posts and blog chapters. I’d like to say it’s due to my intentional desire to be more present in the moment. But it’s really because my hands aren’t working anymore.
Sadly, I took my final (you’re gonna hear that word a lot going forward) drive with my dad the other day. He warned against the idea. Unfortunately, I’m more stubborn than I am smart. We got two blocks before realizing the obvious. I could no longer turn the steering wheel. Now just how symbolic of my life is that?!
After a horribly awkward fire drill of sorts, Dad took over and I was again forced into a premature farewell. This time to the unbound freedom accompanying one of my favorite activities. I suppose it was poetic in a way. After all, it was my father who was the one that taught me how to drive in the first place.
Back to my writing (or lack thereof), I’m working on adapting to eye gaze technology and other accessibility options to help me overcome my recent challenges to communicate. In the meantime, today’s entry will read more like an update than a romantic essay. I simply don’t have the energy to do better. I’m down to one finger and two eyes for the foreseeable future. With that out of the way…
Contemplating the last 7 disappointing months in Boston
Jamie and I recently had our final (and most emotional) visit to MGH in Boston to conclude the trial that we hoped would save my life (or at the very least extend it). To say it’s been a disappointment would be the understatement of my lifetime. My family has been gutted by my recent progression. This pALS ALSFR scores resemble the stock market circa Spring 2020.
Honestly, I’m having trouble moving on. I believed with every fiber of my being that I would be among the first generation to survive ALS. Now that belief is being tested like never before.
Nerd alert: Remember in “The Matrix” when Neo visits The Oracle and discovers that he is NOT, in fact, “The One?” Yeah, this feels kinda like that. I sure hope I’m as wrong as he was.
Much like Neo, driven by love, I too must carry on. While we await open label extension for my trial drug (don’t even get me started on that subject), we’ve already moved on to a new experimental ALS treatment. It’s through an Expanded Access Program, which we advocates are all fighting to see become more prevalent (along with speedier and more flexible FDA guidance).
The new medication is a breathing treatment called RNS-60 and there’s zero percent chance of it being placebo. This drug will soon be included in the game changing Healey Platform Trial, so I feel extremely fortunate to be receiving it this early. It’s too soon to say if it’s working yet, but I haven’t needed to wear my BiPap at night this past week, so there’s that!
Now for a much needed happy ending. When I opened my eyes this morning I noticed Iris was in bed next to me. We played silly games and cuddled for hours. My lack of hand use and poor speech was irrelevant. Our wild imaginations filled in the gaps. And even more spectacular, I felt something I hadn’t felt in a long while. Hope for the future. Whatever that may look like. It was the best morning ever.