Saturday, March 22, 2008

Practicing Patients

Todd Small was stuck in quicksand again. It happened, as always, on the floor of the Seattle machine shop where he worked. His shift complete, Small was making the 150-yard walk from his workstation to his car, when he realized that his left leg was sinking deep in the stuff. Though this had happened before — it happened nearly every day now — he stopped and glanced down at his feet. His Nikes looked normal, still firmly planted on the shop’s concrete floor. But he was stuck, just the same. His brain was sending an electrical pulse saying “walk,” but as the signal streaked from his cerebellum and down his spinal cord, it snagged on scar tissue where the myelin layer insulating his nerve fibers had broken down. The message wasn’t getting to his hip flexors or his hamstrings or his left foot. That connection had been severed by his multiple sclerosis. And once again, Small was left with the feeling that, as he described it, “I’m up to my waist in quicksand.”

For the 400,000 Americans with multiple sclerosis, Todd Small’s description will most likely ring true. Muscle stiffness is a hallmark of the disease, and “foot drop” — the term for Small’s quicksand feeling — is a frequent complaint. The condition is usually treated, as it was in Small’s case, with baclofen, a muscle relaxant that works directly on the spinal cord. Every day for 14 years, he took a single 10-milligram pill. “My neurologist always told me if you take too much it will weaken your muscles. So I never wanted to go over 10 milligrams.” It didn’t seem to have much effect, but he carried on as best he could.

Small would have continued just as he was had he not logged on last June to a Web site called PatientsLikeMe. He expected the sort of online community he’d tried and abandoned several times before — one abundant in sympathy and stories but thin on practical information. But he found something altogether different: data.

READ MORE @ NY TIMES