10 Lessons from 10 Years with ALS
As I approach my TENTH(!) anniversary living with ALS, I’m reflecting on my journey – trying to make some sense out of the chaos. Although I have to constantly relearn these lessons, they’ve become my touchstones whenever I need to gather and regroup. Maybe they can help someone else with ALS, or even someone lucky enough to be “normal” (does that exist?). Take what’s useful and leave the rest. Above all, I hope that it brings you HOPE in this short little experiment we call life.
Your ALS journey is unique. Everyone hears this early on in their diagnosis, but it’s worth repeating. I went from completing a 70.3-mile half Ironman triathlon to walking with a cane (and slurred speech) in 6 months. So you wouldn’t think I’d be alive 10 years later – *I* certainly didn’t, especially since I was told by an ALS doctor that progression is typically linear. It isn’t. The “2-5 year life expectancy” is just a shorthand for how awful ALS is. It’s not a ticking time clock for YOU.
Exercise matters. What accounts for my slowed progression? Extreme luck, and a few other things – the most important of which is exercise. I’m not talking marathons. Except when traveling, I work out 5 days a week: swimming & pool exercises (2x), Pilates-based PT, weightlifting, triking on weekends. Plus, respiratory muscle training (which honestly, I’m getting back into and can already feel the difference). So I’m veryveryveryveryvery lucky, but I’m also working my ass off.
When I’m consistent, I can feel myself getting the teensiest bit stronger. Or at least it’s easier to get around and I have more energy. If you are just starting out or are further progressed, focus on range of motion, your strongest muscle groups, or just have someone stretch you. It feels heavenly.
Mental health matters. Talk about something I forget all the damn time. I’m convinced that years of chronic stress triggered my ALS — work, perfectionism, overtraining and underfueling all combined into a neurological freakout at the cellular level. Until researchers can provide a more scientific cause for my sporadic ALS, I’m sticking to that story…
So I can’t go as hard as I used to. Or move as fast. And need more rest (at this point, everyone who knows me is like uhhhh...). All I’m saying is that I’m trying — trying! — to be more intentional with my time.
Get yourself a puppy or kitten. The very best thing we did after diagnosis was adopt a two-month-old, 2.5-pound kitten. Impossible to be sad around that derpy, hilarious, purring pile of furry snuggle-bones. I seriously think we should start clearing the shelters and handing them out like lollipops with every terminal diagnosis.
Falls can be catastrophic. After every fall that makes my poor husband come running, he asks “what happened?” Which kind of drives me crazy in the moment (dude, I don’t know!), but is a good question to consider as the adrenaline subsidies. Was I turning too quick? Walker too far away? Or is this happening more often and therefore a sign of progression?
Like it or not, fair or not, you have to be vigilant every.single.second. With ALS or if you have balance challenges (ahem, Dad). If you break something, it will set you back in ways you’re not gonna like. More doctor’s visits, more weakness from being stationary, more reliance on others.
In that moment when I’m teetering, I’ve trained myself to think “don’t fall!” or “NO!” Maybe the kick of adrenaline overpowers my slow response times and spasticity, but it’s actually saved me more than a few times.
Find your tribe. It’s often said that ‘ALS is the best club no one wants to be part of,’ and this is absolutely true. The dear friends I’ve met because of ALS, I just can’t imagine my life without. And then there are my Team Drea friends who have shown up over and over for me, for whatever crazy thing I’ve come up with next. And my FAMILY, who would do anything for me, and has. I am beyond lucky, but it is because I was vulnerable enough to tell my story. Lean in, it’s worth it.
You are becoming an ALS warrior. The strongest people I know can only move their eyes (Mayuri, Desi, Shelly, Jay, the Steves…Gleason and Saling). They carry on full, meaningful lives writing books, throwing parties, running organizations, meditating, parenting. It all takes a quiet, steely patience that I can scarcely comprehend, but whenever I’m whining about how long it takes to tie my shoes, these are the warriors I look to. The daily battles we fight now are preparing us, building our strength, wisdom, and tolerance to withstand whatever ALS throws at us.
Actually, these people take the runner-up spot next to the caregivers, past and present – the ones who feed us, change us, do all.the.things, and stay in the fight after we’re gone.
I am healing. Thanks to my HAS sisters Sam and Shelly, I’ve discovered the work of Dr. Joe Dispenza whose work has given me the courage to believe (and say out loud) that I can heal from ALS. I may not be one of Dr. Bedlack’s ALS reversals yet, but this is the work of my next decade.
“Until further notice, celebrate everything.” These words of my late friend, Arthur Cohen (borrowed from somewhere, I’m sure) are true. Birthdays, your diagnose-aversary, any given Tuesday you are on this planet, are all reasons to celebrate this messy, mixed-up, brutiful world and keep working to leave it better than you found it.
You can still live a great life with ALS. It might be nothing like what you pictured — or as long — but it can still be amazing.