Curing PSP one step at a time

"It's incredible because people will find out about our group and say, 'My gosh, I thought we were the only ones!'" she said. "I had to go through it alone, so now I'm trying to make sure that no one else feels alone."

Cindy MacDonald

Chances are most people probably haven't heard of progressive supranuclear palsy (PSP); after all, it's a relatively rare disease, affecting just five or six people per 100,000. But those who have heard of it know just how devastating and debilitating it can be. Cindy MacDonald is one of those people.

MacDonald's mother, Dorothy, was diagnosed with Parkinson's in 1999, according to previous reporting, but something about the diagnosis never seemed right to MacDonald, despite the fact that it was confirmed by two different neurologists; nevertheless, she set aside her doubts to help take care of her mother.

She never forgot those doubts though, so in 2003 she acted on a friend's advice and took her mother to a Naples neurologist, Dr. David Perlmutter, who quickly realized the diagnosis of Parkinson's disease was in fact wrong; Dorothy had PSP.

"It was like, bam, bam, everything was right," MacDonald said in a previous interview.

The misdiagnosis of PSP as Parkinson's isn't unusual; both are neurodegenerative diseases that cause similar symptoms, including stiffness, slowness and clumsiness.

There are a few key differences though; according to CurePSP, patients with PSP "usually stand up straight or occasionally even tilt the head backwards and tend to fall backwards, while those with Parkinson's usually are bent forwards, (and) the problems with vision, speech and swallowing are much more common and severe in PSP than in Parkinson's."

"The clincher is a whole array of symptoms," Perlmutter said in a previous interview, adding that a thorough patient history and physical examination is important.

Another frequent symptom is "emotional incontinence" that causes uncontrollable bursts of laughing or crying, he said. The loss of the "up gaze" ability followed by loss of the ability to gaze down is also common, he said, and the symptom he used to diagnose Dorothy.

Dorothy died in 2008 at the age of 85.

"The disease doesn't affect the person's mental awareness, so they know exactly what's going on right up until the end, and that's the worst part," MacDonald said. "Watching a loved one lose the ability to walk, talk and eventually swallow is simply heartbreaking."

The loss of her mother spurred MacDonald to create the SW Florida PSP Support Group to help those who have either lost a loved one to the disease or are currently suffering from PSP. The group meets at 2 p.m. the second Saturday of every month at ManorCare at Lely Palms.

"It's incredible because people will find out about our group and say, 'My gosh, I thought we were the only ones!'" she said. "I had to go through it alone, so now I'm trying to make sure that no one else feels alone."

The group also sponsors the annual CurePSP Awareness and Memorial Walk, which begins at 10:30 a.m. Saturday. The walk supports those suffering from PSP, corticobasal degeneration (CBD), and multiple system atrophy (MSA), all of which fall within the spectrum of "prime of life" brain diseases.

The three diseases currently have no known cause, treatment or cure, but MacDonald said a PSP drug recently advanced to a second trail phase, which is promising.

This is the walk's fourteenth year, and it has raised more than $250,000 for research, awareness and support programs since its inception. The event includes lunch, a raffle and a silent auction.

This year's auction will include "Home Improvement" memorabilia donated by actress Patricia Richardson, who played Jill Taylor. Robertson is CurePSP's national spokesperson. Her father died from the disease in 2005.

This year's event will also honor Joan Reifler, a Naples resident who organized the first walk in January 2005. Reifler, whose husband died of PSP in 1999, was in charge of the event until 2012 when she handed the reigns to MacDonald, but she's still attended every walk since then and bakes hundreds of cookies for the event each year.

More than 300 people attend the walk annually, and a record crowd is anticipated for this year's event, according to a news release.

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IF YOU GO

CurePSP Awareness and Memorial Walk

When: March 18, 10:30 a.m. - 1:30 p.m.

Where: Mackle Park, 1361 Andalusia Terrace

Cost: $25 for adults; $10 for students. Includes a t-shirt and lunch.

Information: 239-353-3960 or hotrdh@hotmail.com

"It's incredible because people will find out about our group and say, 'My gosh, I thought we were the only ones!'" she said. "I had to go through it alone, so now I'm trying to make sure that no one else feels alone."

Cindy MacDonald