When I found out about my Friedreichs Ataxia (FA) diagnosis at age 16, I quickly found weight lifting to be a great outlet for me in dealing with and escaping the reality of my frightening symptoms. It remains that way today, but fitness has taken on even more importance as my disease progresses.
Weight training has been a constant in my life since my diagnosis. It has been probably the single best way I’ve been able to slow the progression of FA and maintain the physical ability I currently have. As you can imagine, keeping on as much muscle as possible (and even adding muscle mass) can be a huge help in pushing back against a neuromuscular disorder.
But for years after my diagnosis, I sort of kept the same physical stature. I weighed about 130 pounds and had some muscle to show in my upper body, but I assumed all I was lifting for is to avoid getting weaker and smaller – not to grow stronger. So what reason did I have to push myself in my training? For years, I did simple, safe workouts on machines at Planet Fitness or the Opelika Sportsplex. They were good, but not really challenging or pushing my limits.
That continued until the year after I graduated college, when I found a gem in Iron Tribe Fitness in Auburn. Long story short, the guy who hosted my college small group, Derek Gann, happened to own Iron Tribe. We were just getting to know each other when I mentioned working out at the Sportsplex. Basically, he offered to let me train at Iron Tribe for the same amount that I paid for a membership at the Sportsplex (which was and is incredibly generous and means a lot). His goal was for me to do more than what I thought I was able to do. Boy, he knew what he was saying, too.
When I first came in last May, he paired me with a trainer for a weekly lifting session. Still, we weren’t sure how much progress I was capable of. My ataxian balance made lifting free weights a challenge, and I needed support to do any kind of standing exercise. I could barely even bench press the empty bar without shaking. Since high school, I mostly stuck with weight machines because they felt safer and more supportive.
With a trainer there to spot me and help set up equipment, I quickly began to surprise myself as well as my trainers, Austin and Annie. Not really with how much weight I could lift, but with how much my stability was improving and how many reps I could do at a higher intensity. We really attacked my core, which had it easy doing the Smith machine bench presses or leg press instead of squats and body weight exercises. I did overhead press and chest press with dumbbells, bench press, pull ups, band pull aparts, assisted squats, get down and back ups, wall sits, lat pull downs, banded rows, walking with a weighted vest and more. *many of these workout videos can be seen at bottom of screen*
Most importantly, everything I do at Iron Tribe is completed in a circuit, not just one exercise at a time. That means more intensity in a smaller time period (I still need rest between sets and plenty of water with FA, but less of the phone scrolling and mind wandering like before). For example, I’ll do 4 sets of bench/chest press, banded rows, and then squats. Then I’ll do 3 sets of pull ups, wall sits and shoulder raises. My workouts usually take a total of 50-60 minutes, so like an hour less but 3 times more beneficial than before.
A few months into training, we found out just how beneficial it really was. I’m a numbers guy, so seeing proof of progress motivates me. When I did an InBody scan at the end of last summer and saw that I had added almost 2 pounds of muscle, I was shocked. I didn’t think that was even possible! It pushed me to keep going.
Fast forward to this October: my next In Body scan told me I added over 4 pounds of muscle mass since I started at Iron Tribe about 15 months ago. I also gained weight and increased my body fat percentage to about 18% – about a 2.8% increase. For a 24-year-old male, 15–20% is a healthy range, so I’ll gladly take it. I’d been under 130 pounds since the end of high school (over 6 years ago), so I was actually excited to gain weight — another thing I didn’t think I could really do.
After the first In Body scan opened my eyes to my potential growth, I was also motivated to make a few nutritional changes/habits. A major one is I began going next door to Clean Eatz after my workouts to stock up on high-protein/carb lunches, whey protein and Super Food powder for shakes, and a recovery snack of apples and peanut butter dip with an iced protein coffee. I also try to limit my intake of fast food and sweets (as I should do anyways). Another big one is taking creatine gummies (Force Factor brand) and increasing my daily water intake (filling up my Stanley helps).
As you can probably imagine, this type of weight lifting is more strenuous on my body than the kind I used to do at Planet Fitness. To deal with soreness and discomfort, stretching and occasional massages have also become part of my routine. I try to do a full stretching routine twice a week, plus warm-up stretches directly before each workout (hamstrings, hip flexors, back/core, shoulders, forearms). I’ve considered seeing a chiropractor, but I haven’t had enough pain to pull the trigger yet.
I usually do strength training 3-4 times a week, with 2-3 of those at Iron Tribe. Even in the time since I’ve been at the Tribe, seasons of life have changed how many times a week I go to the gym. But for 6 months I had an exercise bike at home through a clinical trial, and I also have the leftovers from my old garage gym – where my fitness journey started around 2016: dumbbells, a pull-up bar and the carpet for push ups and ab circuit. (should I do a home workout tutorial next?) Where I work out changes, but consistency is key to progress no matter what.
All in all, this fitness journey has changed my life for the better. It has helped me fight FA, meet some great people, be part of an awesome community, practice discipline and resiliency, get in better shape, and build confidence. My goal is to stay independent as long and as much as I can, and exercise is the most crucial way I can make that happen – now and into the future.
What I’ve Learned Training With FA:
- Your “limits” are sometimes just assumptions
- Hard days and occasional falls are just part of it if you want results
- Balance safety with risk… trust your gut and trainer’s brain
- Muscle is medicine – weight lifting really does benefit in everyday life
- Consistency beats intensity
- Accountability & community make a world of difference
Here are some videos of a bunch of my different exercises at Iron Tribe. Let me know if you have any questions or if there’s anything else you might like to see. I usually post my workout videos on Instagram @ noah.griffith.26
*tries to be cool and falls* story of my frickin life
(Side note: squats make me more sore than anything, but the more I do them, the less sore I get.)
Pull ups/ chin ups: I usually do 3-4 sets of max reps (as many as I can do, which is usually 8-12 depending on the grip). Important to try to keep from swaying back and forth, bend knees or recenter yourself in between reps if needed.
Additional resources on exercise and staying active with FA/rare diseases:
- Gavin Sippel via Instagram OR YouTube– adaptive athlete with FA
- Challenged Athletes Foundation
- Christopher J Nercesian Foundation
- Kelly Gregory on Instagram OR Facebook– nutritionist & trainer with FA
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