COPING WITH FACIAL WEAKNESS IN FSHD
by Margaret Wahl
Songs tell us we're never fully dressed without a smile and exhort us to pack up our troubles in our old kit bags and -- smile, smile, smile. Smiling mouths tell us to buy everything from toothpaste and shampoo to diamonds and automobiles, and stylized "smiley faces" peer at us from posters and stickers.
There's more space in the brain devoted to muscle control of the face than to any other part of the body except the hands. And, a part of the brain known as the amygdala has as one of its specific functions the interpretation of other people's facial expressions.
Smiling is considered a milestone in a baby's life, one anxiously awaited by parents. ("Is it a smile, or is it just gas?" they wonder. "Is the baby connected to us yet?")
But, what about people, like many with facioscapulohumeral muscular dystrophy (FSHD), who can't smile? For many with this condition, weakness in the facial muscles makes any facial expression difficult, and smiling is particularly hard.
Paul Topkin of Lakeland, Fla., has his picture taken fairly often, mostly because of his recent fame as a builder of replicas of historic ships that sell for thousands of dollars to individuals and corporations.
Some people might see a photo of the 56-year-old Topkin and think he's a rather grim-looking artist, perhaps in need of treatment for depression. But Topkin has FSHD and, despite a lively sense of humor, he can't smile.To Read More