I have Limb-Girdle (LGMD) but I know that FSH affects the face and shoulders. With any type of MD it's important to remember: Work the affected muscles enough to prevent atrophy, but not so much that you break down the muscle tissue.
Weight lifters work out hard and break down muscle cells. Then their body replaces the lost muscle cells with even more. Unfortunately, in most cases, the body of an MD patient can't replace the lost muscle cells.
It's usually very beneficial however to at least move and work the muscles every day to keep them toned and from atrophying. Use the muscles in your face, eyes and shoulders lightly each day. I personally use light dumbbells, around 3 pounds. Often I flex my fingers, arms, toes and legs while watching TV at night just to keep the muscles in use.
I have LGMD, and work out daily in a warm water pool, and I also ride an exercise bike at home at night. You may want to ask your neurologist for a referral to a physical therapist, who can guide you, and give you exercises that will help you out. If you have access to a warm water pool where you live, it is an excellent place to go, as you can work out a lot, but everything is low impact.
There is a lot of confusion about how much or little "we" should exercise, my neurologist said that my body will let me know when I have had enough. I currently work out around three hours a day, and feel tired and worn out if I don't. I am in better shape now than when I was a very active teenager...
Yes, good nutrition is important. I also have good experience with supplements as you mentioned. I take 400 mg Co-Q10, Vitamin E with selenium (the selenium is important in order for your body to effectively absorb the vit E), B-12 (lots of it even though I know it is not as healthy as originally thought, but the energy is awesome) Green tea extract, L-Carnitine, Creatine (about an hour before working out), and sometimes protandim. Protandim is fairly expensive, but the antioxidating properties of it are noticeable after just a few days!
I have tried once in a while to cut out one or two of them to see what the individual supplement does, and found that the combination is what works!
do you have your kitchen counter full of bottles?
I tried creatine and glutamine combination and some androstendium back when was available. the antioxidants are good, and i heard lots of good things about curcumin.
Happy thanks giving.