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I was symptomatically diagnosed when I was in my early 20’s.  Prior to that I had been misdiagnosed with springle’s scapulai in my early teens.  Throughout my teens and into my adult life I stayed quite active .. I was a cross country runner, played volleyball and was a cheerleader in high school and rose horses.  in fact, other then having to deal with somewhat ill-fitting clothes for my shoulders, FSH didn’t seem to hinder me much.  Thankfully my mother was a seamstress and either made or altered my clothes to accommodate.  Into late 30’s and early 40’s I found I was still able to remain somewhat active but paid for it in the days that followed because of pain in my shoulders and upper back.  As my career turned more sedentary so did I until early 50’s when I had an AHA moment and decided to make some changes when I found I couldn’t balance on one foot long enough to take my sock off.  The following week I started going to the gym .. determined to not need a wheelchair in my 70’s like my mother, who was also afflicted with FSH.  A year later I hired a personal trainer to help me focus on the compromised muscles and together over the next 5 years went from a slow walk that tired me after only a few minutes, to doing a 13.5 minute mile and participating in 5K’s, and being unable to raise my arm higher than my shoulder to reaching overhead to, for example, get something from a top shelf in the cupboard.  I go for a daily 2 miles walk or snowshoe trek and do some form of structured exercise at least 3 times a week and have improved not only my balance to where I am able to participate in yoga poses I could only envy before, but overall strength, core and cardio.  I  I am happy with my progress and my neurologist is as well so to share what I have learned I started a Facebook group called ‘moving with FSHD” where patients and caregivers share exercises and support each other in living an active lifestyle despite this disease. I would like to say exercising and being active is an option .. I wish it was .. but if it was I probably wouldn’t do it as I have found I live in a use it or lose it world and for this reason, I not only chose to use it .. I need to.