Rare disease of PSP affects only 5 or 6 per 100,000 people

My online friend Joe Blanc posted this article about a New Jersey man with progressive supranuclear palsy to the Society for PSP’s Forum recently.


PSP: A rare disease 
Brain ailment affects only 5 or 6 per 100,000 people, including John Tartis of Glen Gardner
BY Jeff Weber, staff writer
October 14, 2008

You likely have heard of Parkinson’s disease, Alzheimer’s disease and Lou Gehrig’s disease (also known as amyotrophic lateral sclerosis, or ALS).

What do they have in common? Each affects the brain and can cause anything from loss of memory and/or motor function to even death.

But there is another brain disease, one that affects far fewer people — only five or six per every 100,000 — but is just as potent, about which many people are not aware. It’s called progressive supranuclear palsy, or PSP, and like those other diseases, it has no cure.

There are treatments for Parkinson’s, Alzheimer’s and ALS, but none yet exists for PSP. Those suffering from the neurodegenerative ailment must work hard to live through it — usually for six to 10 years, according to the Society for PSP — until finally succumbing to it.

That’s just what 71-year-old John Tartis of Glen Gardner has been doing since being diagnosed with PSP in October 2004.

Tartis doesn’t speak much these days, finding it difficult to join conversations, but he has made one thing clear: “I feel helpless and can’t figure things out anymore.”

Tartis originally was misdiagnosed with Parkinson’s disease — a common occurrence for those with PSP, according to www.curepsp.org — but thanks to neurologist Dr. Lawrence Golbe of Robert Wood University Hospital in New Brunswick, at least he’s aware of what he has.

But that peace of mind still doesn’t help quell myriad symptoms.

“I am tired all the time but can’t sleep at night,” said Tartis, who had a scale of one to 100 devised for him by Golbe to track the progress of the disease. When first diagnosed, Tartis registered at 14. He now is at 63. “I miss being able to fool around with the car and do things myself (because) I can’t move or walk by myself.”

Tartis — a retired Newark Deputy Fire Chief who used to enjoy skiing, golf, tennis, sailing, biking and camping — also suffers from a lack of concentration and often shows disinterest in conversation. Still, he never is unpleasant nor exhibits any level of frustration.

When asked how he’s doing, Tartis simply says, “Good,” and his wife, Carol, believes he doesn’t truly understand that PSP is fatal. In fact, after a few visits to Golbe, Tartis asked, “When am I going to get better?”

Golbe’s response? “There may be a trial some time that you could participate in; otherwise, the disease will slowly progress.”

And it has. Tartis sometimes falls backward. At first, he needed only a cane. Then came a walker and now a wheelchair. He can barely write, and when he does, the penmanship often is illegible. Tartis even has difficulty feeding himself, since he cannot focus or see the food on the plate.

October is National PSP Awareness Month, and the Society for PSP and www.curepsp.org hope to get the word out about their mission of finding treatment and ultimately a cure. If there were a cure, Tartis once again could enjoy the things he loves, such as skiing, instead of watching on TV and saying, “I wish I could still do that.”

More information is available by calling 800-457-4777 or by visit the Web site.