Multiple Sclerosis, Parkinson’s, ALS, by now most are all familiar with those crippling illnesses. Another one some may not have heard of is PSP or Progressive Supranuclear Palsy.
There are about 20,000 cases in the US. What doctors know is that for some reason a protein in our brain begins to act erratically and starts killing off cells. Why? No one knows.
There is no known cause or cure, and anyone is at risk. It’s more common in people ages 50+. Many doctors have never heard of it, making it that much harder to treat and understand.
But doctors at UAMS are going head to head with PSP, and Arkansas is seeing its fair share of cases, said UAMS Neurologist Dr. Mark Pippenger.
“The prevalence in the United States is estimated at 7 in 100,000 people that have it. By that metric, with the population in central Arkansas, we should have maybe a dozen cases. But we are seeing more than that, so we have seen quite a few with the disease.”
For some, PSP can come out of the blue and hit like an anvil. Former Pine Bluff Mayor and State Senator Jerry Taylor found that out.
“You know, when I bumped my head that first time. I was just standing there, and then, my head was down against the floor. It’s just terrible. It’s a terrible disease.”
Taylor, a more than astute politician, is described by colleagues as being loyal and fearless.
Dealing with PSP now means getting around in a wheelchair and wearing a helmet to prevent head injuries because of falls.
“Yeah, balance, my balance is just terrible,” Taylor said.
His wife recalls the time when he struggled to drive out of a parking lot, confusing left and right and not understanding why. It went downhill from there.
“To watch somebody going from knowing everything, to doing everything, he was always really smart. Finances, he knew them. He got to where he could not add or subtract. It’s terrible.”
For the Taylors and others with PSP, knowing something is wrong, and knowing you need help becomes more troubling, especially when no one knows what you have. Taylor was finally diagnosed August 7, 2015.
“It comes on pretty quickly. I didn’t have any idea what it was.”
He’s not alone. Donna Anderson was in the prime of her life when everything changed.
“I used to play bridge and work in the yard, and I don’t do anything anymore,” said Anderson.
Donna and her husband were at a loss as to why she was having such a hard time doing everyday things, and so were doctors.
PSP patients can experience:
- Loss of balance and muscle control
- Problems with speech and swallowing
- Memory loss
- Hard time reasoning
“We saw 10 or 11 doctors, neurologists, two heart doctors, never got a clear answer to what was going on, until we went to UAMS.”
The problem with diagnosing it is the symptoms look like so many other things. One misdiagnoses is Parkinson’s. Doctors at UAMS say it is worse.
“Unlike Parkinson’s, unfortunately Progressive Supranuclear Palsy does lead to a decrease in life span. That’s another reason we need to stop it early to prevent it or slow it down if we can,” said Dr. Tuhin Virmani, Director of the UAMS Movement Disorders Program.
While a cure remains elusive, patients, caregivers and doctors are also trying to educate.
“We want the public to know, but we also want doctors to know,” said Linda Taylor, her husband echoing the sentiment.
Dr. Erica Petersen says the more people and physicians know about PSP, the better chance they can diagnose it early and better the odds of finding treatment while a cure is being sought.
“A family practice doctor may not see more than one of these PSP patients in his or her career. So being able to come to a university where someone sees these patients, one or two a week, means you are seeing a person with a degree of expertise.”
The protein involved is also linked to Alzheimer’s, doctors believe
Finding the mechanism that stops or at least slows the onset or progression of PSP may also lead to help for Alzheimer’s patients.
There are medical trials underway, and UAMS is playing a very active role.