Fewer than a fifth of the 20,000 Americans believed to have PSP have been diagnosed. Many people have been mistakenly told they have Alzheimer's or Parkinson's, two related diseases. All three are conditions in which brain cells gradually die. In PSP, those cells are in a few tiny but important places in the base of the brain. It usually strikes people in their 60s, causing trouble with vision, swallowing, speaking, walking and balance.
Patients say they feel as if they're moving through molasses.
The course of the disease is faster than Parkinson's, leading to death in about seven years. And unlike Alzheimer's, whose main problems involve memory and language loss, mental impairment is mild. Someone with PSP can consider their plunge into helplessness. Everyone feels very remote, very alone. The New Jersey woman formed a support group.