Stephanie wonders whether I have a degenerative neuromuscular disease. Coming from a practicing neurologist, her prognosis spirals me into days of reflection. I’ve never had a body similar to anyone else. So scrawny as a kid, my elbows and knees were oddly double-joined. My toes are not independently flexible, more flipper than dextrous grabber. College food binging coupled with gym workouts put on some muscle weight (160 lbs.!) that I slowly lost in my thirties and forties.
Recently, however, as my cohort grows fatter, I disappear skinnier (135 lbs.). Belts require extra holes. My shoulders and hips hurt more. I suffer periodic foot cramps. I buy 28-inch pants. Among other conditions, Stephanie wonders whether I have facioscapulohumeral muscular dystrophy (FSHD) which withers the face, shoulder blades, and upper arm muscles. I feel mostly fine now, but fear losing more mass. Are my thighs too skinny? Will I have trouble raising my arms? I feel like an elf slowly fading away.
I ought to see a primary-care doctor, then a neuromuscular specialist, neither easy during a pandemic, but at least I switched insurance to Kaiser that can offer these medical enquiries. FSHD is caused genetically by too few copies of the D4Z4 gene, 10+ normally, but 1-10 for some FSHD sufferers. Perhaps I’m borderline in the high single digits, making this condition not surface until middle-age. Regardless of outcome, I anxiously consider all neuromuscular diseases. Do I have early-onset Parkinsons? Arthritis?
Such medical muddling wakes me up to the importance of exercise. I bought some at-home exercise bands to do weight training. Fortunately, in my case, I need strengthen the weakest of muscles, so I stretch my hips, flex my shoulders, and do presses to add mass to my upper chest. I’m bending now from my glutes and making sure to flex my toes. Instead of avoiding the little muscles, I’m requesting them to do some work. Perhaps I’m all right after all.