‘Parkinson’s isn’t a death sentence’; new support group forms to raise awareness

Parkinson's patients in Florida participate in exercise as a way to help balance and mobility issues that come along with the disease, date and location not specified | Photo courtesy of Lee Memorial Health Systems, St. George News / Cedar City News

CEDAR CITY — When Lee Talbot started falling off the heavy equipment he was operating as part of his job, his wife, registered nurse Diane Talbot, suspected it was Parkinson’s disease a year before the doctors were willing to make the definitive prognosis.

“His first symptom was that he felt like he was stuttering,” Diane Talbot said. “Instead of his hands tremoring, his jaw was tremoring.”

Ten years later, Lee and Diane Talbot are living in Brookdale, a senior living community in Cedar City, where Lee can get the level of care he requires. In December 2016, Diane Talbot started a Parkinson’s support group that meets at Brookdale the third Wednesday of every month.

The group was started not only for those with the disease to get together, Talbot said, but also to raise awareness and financial support.

“When my husband got it 10 years ago, I thought it was moving right along. Michael J. Fox’s foundation was getting information out,” she said, “but it hasn’t moved as fast as I wanted it to for my husband. So let’s get it fixed up and going faster for someone else’s husband.”

April is Parkinson’s Awareness Month. According to the Parkinson’s Disease Foundation, Parkinson’s is the second most common neurodegenerative disease in the United States after Alzheimer’s. The estimated economic burden of Parkinson’s is at least $14.4 billion annually, including indirect costs to patients and family members of $6.3 billion.

Symptoms vary from person to person but may include tremors; slowness of movement and rigidity; difficulty with balance, swallowing, chewing and speaking; cognitive impairment and dementia; mood disorders such as depression and anxiety; constipation; skin problems; and sleep difficulties.

There are all kinds of first symptoms that you’re going to see,” Talbot said.

As Talbot said, actor Michael J. Fox brought considerable light to the topic of Parkinson’s through his foundation, but currently there is no cure, therapy or drug to slow or halt the progression of Parkinson’s disease.

However, Talbot said, progress is being made.

“Parkinson’s research is really moving right now. They are talking about miracle things going on. Miracle medications and miracle treatments.”

Talbot also cited the 23andMe Parkinson’s research initiative, which partners with The Michael J. Fox Foundation to study the genetic makeup of individuals with Parkinson’s disease.

“It doesn’t cost anything,” she said. “They do your genetic testing. You get the results. … If you can’t go to someplace to be part of a research group, this is a good way to get your genes into a research group and see what’s going on.”

The stated goal of the 23andMe research group is to better understand the impact genetics has on the disease. Among other accomplishments, in 2014 the group identified six new genetic regions that had not previously been associated with the disease.

This is just one example of a resource Talbot said the recently formed support group has to offer. She said:

Everyone is welcome. We’ve got enough of a group started right now that they have a good idea of where to go for support and where to find things. We’ve got a library going. … Everybody is coming from different directions, different doctors. Some go to Salt Lake, some go to St. George. And they’re all ready to share and ready to pull in everything they can learn and keep going.

The group represents a wide range of cases and symptoms, Talbot said, but people shouldn’t let their expectations stop them from showing up.

“We have people who have had Parkinson’s for 10 years who are at end stage Parkinson’s,” she said, “and people that have had it for 10 years and are still walking and doing really great. People have said that they go to a Parkinson’s support group, and the expectation is a bunch of people in wheelchairs that are drooling.”

Drooling is a problem, and people end up in wheelchairs, Talbot said, but even with the most severe, late-stage cases, there is still hope.

“The goal for Parkinson’s Awareness Month is to make people aware not only that Parkinson’s is around and that Parkinson’s isn’t a death sentence, but to make people understand that Parkinson’s research needs the donations,” she said. “They’re treating cancers that 10 years ago were not treatable. If we can get Parkinson’s to that point, we need the donations and the awareness that Grandpa’s hands shake, but Grandpa’s OK.”

The support group meets the third Wednesday of every month at 1 p.m. at Brookdale, located at 995 S. Regency Road, Cedar City. For more information, contact Talbot at 775-292-0057.

Email: pdail@stgnews.com

Twitter: @STGnews

Copyright St. George News, SaintGeorgeUtah.com LLC, 2017, all rights reserved.

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