Chapter 15: Quicksand
A trap befalls our protagonist.
Have you ever had that dream where you try and run but your legs hardly move? While you remain paralyzed despite your best efforts to flee, there’s inevitably some-“thing" gaining ground on you. ALWAYS gaining ground. Until… well, until you presumably wake up.
Evidently, nightmares such as this are common. So much so that there’s been much debate about the meaning behind the phenomena. There are theories about sleep stages where you are relatively paralyzed thus leading to a disconnect during one of these movement focused fantasies. Or that dreams themselves actually play out in slow motion all the time. More symbolic, Freudian even, perhaps there’s significant resistance in your waking life.
It’s all a moot point though. This isn’t a dream. This is my existence. When you try and try and try only to sink further into the quicksand. It’s a helpless feeling that’s not unique to what I’m going through but unparalleled in regards to complexity when it comes to this terminal illness.
Ever since the “Fight Harder Daddy” chapter, I’ve been OBSESSED with cracking this impenetrable nut that is ALS.
Let’s start with a review of my daily routine…
7:30am - Take first round of meds / supplements
20 minutes of infrared light therapy
8am - Breakfast
Take second round of meds / supplements
9am - Radicava infusions at the clinic (2 hours)
Study ALS during infusion
Protein smoothie on the way to gym
12pm - Consultations and work
Pre-Workout snack
3pm - Workout and stretch
Post-Workout protein shake
4pm - Third round of meds / supplements
Hang with my family
6pm - Dinner
Fourth Round of meds / supplements
6:30pm - Breathing exercises
7pm - Bath-time with Iris / Bedtime stories
Study ALS more / watch webinars
8:30pm - Take melatonin then go to bed
Rinse and repeat
Add in hospital visits across the country, counseling, a research trial, countless zoom meetings with specialists, and our commitment to patient advocacy (Jamie and I are involved with fundraising, board of directors, and legislative affairs committees for SIX organizations); and you can see that we have mustered our full resistance against this disease.
But much like that aforementioned odd, viscosity morphing sludge; the harder I seem to fight, the more trapped I become.
My progression in regards to muscle weakness has only accelerated over the past two months. Despite my impeccable regimen, there hasn’t been one thing I’ve added that appears to slow the degeneration down. This was NOT how it was supposed to play out. All the research. My consistency and discipline. A timely diagnosis. Doesn’t the universe know that I’m the guy who beats ALS?!
By our admittedly outlandish expectations I would call this a false start.
My strategy was (still is) to use a combination of lifestyle, homeopathic, medicinal (Rx), physical, and nutritional interventions to slow my progression until I get into a promising trial or another therapy becomes available (FDA has not been helpful in this strategy).
Further side note: I know I’ve been discreet about the stem cell trial we already got into and there’s a reason for that. I’ll explain in due time. But at this point in the story, I am not in a research trial.
Veterans of this illness often find their own unique protocols that they feel best extends their life and ability to function.
And Jamie and I are both starting to wonder if less is more in this regard.
We are on the verge of taking a little experimental hiatus because I take A LOT of pills.
Wouldn’t it be ironic if the pitifully few approved medications I use for ALS are actually making me worse? There’s certainly those that have had that experience. However, with so much variability and limited options, you just have to try for yourself and take good notes.
This new concept of “therapeutic exercise” has also been a bit of a moving target. My muscles simply will not adapt or recover the same as before. Therefore, workout goals have changed from improved performance to reduced symptoms and/or pain. I’m constantly walking the tightrope when it comes to my routine. Too much intensity or volume can do irreversible damage. Too little however, and I quickly lose the fitness I’ve built up over a lifetime. It all fits the quicksand narrative perfectly as ALS is a challenge one cannot outwork or simply “push through.”
I believe that it’s only a matter of time before I figure this all out. I still have a few more bullets in the chamber and an ace up my sleeve to boot. Though we are tired emotionally and physically, Jamie and I are nowhere near exhausted in our options.
While ALS is doing what it does so well (giving our plans the middle finger) we are regrouping for our next all out assault. In the meantime we will have to fight SMARTER because no one in the history of this disease could possibly go any HARDER than we already are.