TeamUP co-captain Rod Fulmer lives with a condition known as Facioscapulohumeral muscular dystrophy (FSHD). But with the help of his Allard AFO braces — and the support of his family — he won’t let anything stand in his way. Get to know Rod with these 5 Questions!
1. Can you explain what FSHD is and how it affects your life?
FSHD is a rare but the most common form of MD. FSHD affects people in varying degrees. FSHD affects both men and women and most start out in life with a normal childhood with very little limitations. In early teens weakening of the arms, legs, torso and facial muscles begin. FSHD can progress very slowly and then at times you may have a rapid decline of strength. Some are in wheel chairs before adulthood.
2. What is the one thing you’d like the general public to know or understand about FSHD?
Although we don’t walk or move exactly normal most people don’t realize the weaknesses we have (not even family). It’s hard picking up a large drink much less a gallon of milk. Stairs and curbs are hard to maneuver.
3. Are you involved with any FSHD-related groups or organizations? How so?
I am involved with the FSH Society and was instrumental in getting a chapter started here in Atlanta. For many years I was active with the MDA but later realized the FSH Society is a grass roots organization of FSHD patients heavily involved with research.
4. How have your Allard AFOs helped with FSHD? What kinds of activities have they allowed you to do?
My Allard Blue Rocker braces have allowed me to walk much longer than I probably would have. And walk more normally without falling.
5. What would you say to other people living with FSHD or other mobility challenges?
Keep moving as long as you can, because there are things out there like AFO’s that help. Get in the water if you can. Water allows me a full cardio workout. There is so much research going on who knows there may be a cure for what ails you, so you need to be ready.