This email will mostly be of interest to the PSP folks, and maybe of passing interest to the CBD and MSA folks.
Local support group member Phil Myers sent me this info today.
Patricia Richardson, the actress who was on a show called “Home Improvement,” is the national spokesperson for CurePSP. She was on “The Doctors” today (July 11, 2013). “The Doctors” had segments today with actresses who played mothers on TV shows.
She talked about PSP, which is a disease her father had. She mentioned CBD and MSA. She said that the only person with PSP that we’ve heard of is Dudley Moore, and she said that Johnny Cash had MSA. (I thought that the MSA community did NOT think Johnny Cash had MSA.)
When describing PSP, she said that it was a tauopathy, like traumatic brain injury that returning vets get and like football players. I’m not aware that TBI injuries in war zones are connected with the protein tau. Certainly, chronic traumatic encephalopathy (CTE) is a tauopathy that many athletes have been found to have on post-mortem brain examination. CTE is caused in some way by repeated head trauma.
There was a graphic that came up when she talked that said 5 out of 100,000 people have PSP. Ms. Richardson made the point that only one in three are diagnosed with PSP. PSP is as common as ALS or Lou Gehrig’s Disease but people have heard of ALS.
Here’s a link to “The Doctors” webpage on today’s segment about health secrets from TV moms:
On that webpage, scroll down to find a summary of info on PSP and a link to three short clips — 90-second PSP overview, 90-second comparison of PSP and Parkinson’s, and 50-second caregiver advice from Patricia Richardson.
I’ve copied the info from “The Doctors” website on PSP below. (The details on the “synopsis” page were not all discussed in the segment with Patricia Richardson.)
Patricia Richardson on PSP Awareness
As the Home Improvement mom America could relate to, actress Patricia Richardson went from the TV limelight to being a national spokesperson for Cure PSP — an organization combating a rare and often misdiagnosed brain disease that claimed the life of her father and fuels her fight to find a cure.
“He probably had the disease [for] five or six years before we knew he did,” Patricia says. “We’re only really catching 1 in probably 3 people with it.”
PSP, or progressive supranuclear palsy, is a degenerative neurological disorder that causes abnormal movement, similar to that of Parkinson’s disease. People suffering from PSP develop sluggish body movement and stiffness, as well as balance problems and difficulty with eye and neck motility. PSP is caused by an inability to process natural waste from the cells in the brain. Most people can process this waste but for those with PSP, the waste remains in the brain and creates a protein that attacks the brain cells. Oftentimes, people are misdiagnosed with Parkinson’s and prescribed medication. If the medication proves ineffective, it signals that PSP may be the cause, as opposed to other brain diseases.
Approximately 5 people in every 100,000 will develop PSP, but only a third are diagnosed. Unfortunately, an official diagnosis usually occurs after death, when doctors can examine the brain during an autopsy to verify if the proteins that cause PSP are present. The best living diagnosis is if patients are not reacting well to their Parkinson’s medication. PSP usually develops in people in their 50s and 60s — not in the later years. The disease tends to last between five and 10 years, before patients die from related health complications, such as aspirational pneumonia and brain ulcers. Researchers speculate that there may be a genetic component to PSP, but the specific gene has yet to be identified.
(Note: there’s a short ad before these video clips)
This video is just over 3 minutes. Caregiving and PSP are first raised about 1:33. CBD and MSA are mentioned shortly thereafter.
This clip is about a minute and a half. It features Dr. Carlos Portera-Cailliau. PSP is compared to Parkinson’s Disease.
Patricia Richardson’s Advice for Caregivers
This clip is about 50 seconds long. Patricia Richardson advises people to get into a patient advocacy group. Caregivers are told to take care of themselves.