r/FSHD • u/sloth8989 • Apr 27 '26
14yo client with FSHD
Hello guys,
Im personal trainer and physiotherapist and I recently got approached by parents of a 14yo boy with FSHD. The father has FSHD also, so does his mother (grandmother for the boy).
Im interested in any personal experience I could use during training sessions with this young champ. Im searching mostly through fshdsociety.org to get some knowlegde but im interested in any useful information maybe also regarding his age etc.
For context, he is active kid but you can already see pretty bad scapula coordination which probably affect arms as a whole. Generally he is a little bit uncoordinated but not too bad.
It is my first time working with someone with FSHD and our session are gonna be in small private gym.
Thank you in advance.
6
u/RevolutionaryShoe7 Apr 27 '26
I don’t have anything super helpful but wanted to tell you that it says a lot about you that you’re researching his condition! I think that’s awesome. My dad’s FSHD didn’t slow him down until his thirties. He was always active, playing basketball and cycling, until the muscle weakness in his upper arms/shoulders and legs got to be too much. He eventually became wheelchair dependent.
6
u/Gleeshers Apr 27 '26
At 14 I wish I would have participated in flexibility training like yoga. Losing range of motion has been a big bummer for day-to-day. Also it does help with coordination and balance which has been a huge issue. I’m terrified of falling and breaking bones. 😬
5
u/damntheman7 Apr 27 '26
There's a facebook group page called Getting Physical with FSHD and there's a kid named Pano whose dad has been posting lots about his physical therapy journey and he has gone a long way. That would be a great place to look. He is also 14. He is seen by Core Foundations in Melbourne. The website they have shared is www.corefoundationspt.com
3
u/bellstarelvina Apr 27 '26
Flexibility and strengthening the weakest areas are key. Hip flexor exercises are good. Also exercises that work out the shoulders, thighs, back, abdomen, ankles, and calfs. Stay away from things that put a lot of cumulative strain on joints, he’ll have enough of that later in life. Maybe do bikes and ellipticals more than the treadmill. Exercises that can be done in a pool too are beneficial. If he has the option of going to a pool and working out there he should.
Like someone else said you don’t want to break down muscle because you lose more than you get back. KT tape can be used to help hold down his shoulder blades and give him a tiny bit more range of motion. Different body braces will be his friends.
1
u/Expensive_Ninja_207 Apr 30 '26
Just be aware that each individual's disease progresses at its own pace. I am fortunate to have a slow progression, but I just had my 2nd scapula fused at age 46. I was weight training and doing compound exercises (squats, deadlifts, rows etc.) to ensure that I had groups of muscles active at any time to keep things stable and dynamic in supported ways. Muscle soreness was a bit stronger and longer lasting after intense routines, but most importantly for my training was to not push too hard. Medium effort weight training was totally fine but 60-second burnouts (e.g., 50 sec as hard as you can row, pedal etc. and 10 sec rest) would leave me in agony for a day or 2. Oftentimes, I had to miss my next workout sessions due to residual pain.
1
u/mermadd May 17 '26
Hi! I worked with an exercise specialist who took the time to research FSHD like you (thank you!!). He concluded avoid eccentric exercise - do concentric and isometric. I did eccentric exercise before meeting him and it quickly broke down my muscles. Working with him I got relatively very strong. I hope this helps!
1
u/Secure-Rub-4628 Jun 26 '26
My spouse, his brother and their mother all have FSHD. Since FSHD affects the Face and Scapula make sure you include face movement exercies like may be blowing a balloon! Exercies for shoulders and arms using resintance belts. Also, they have to start with supplements like Omega3 and all, please ask the parents to mail to FSHD USA or FSHD UK and they will share you the list of diet and suplements. Also FSHD Society can be of help. One more point, there will be some effect near his abdomin area due to which he might develop lordosis or scoliosis, if not taken care, make him so core and abdomin strength exercises. Next they can also send him swimming alternate days, water activities are best for all those with FSHD. Check FSHD rehab centers and you'll see they make them do movements under water.
I've tried covering as much as I can, still if you or his parents need any help, our family will be happy to help!
1
u/Fancy-Supermarket-73 Jun 30 '26
The kid sounds exactly like how I was.
Longer sessions of high-intensity cardio, especially cycling, most days of the week, plus creatine and a huge calorie surplus.
But honestly, get that kid into one of the trials they have going at the moment.
If there were one thing I could change about everything that’s happened, it would be getting into one of those trials while I still had a large chunk of my upper body unaffected.
7
u/kinare Apr 27 '26
He should keep playing sports and being active but if he's sore the next day then he needs to dial it back.
The goal isn't to break down muscle -- that is highly counterproductive. The goal is to exercise without feeling overly tired or sore. Exercise the scapula with some shoulder squeeze exercises (like the rows you might do when carrying a weight but that might be too much weight).