This week's #SWFLstrong features Ellen Chaney and Jacqueline Urso, who founded the Parkinson's Association of Southwest Florida 20 years ago. Jamie Stoddard
A disease can completely change a person’s life. Forced away from hobbies, activities and sometimes friends, it can completely control everything about them. But two women work to ensure support is found.
Parkinson’s disease can be one such condition, leaving some too worried or even embarrassed to leave home and do things they once loved to do, but the Parkinson Association of Southwest Florida is ready to help, explained Ellen Chaney, co-founder of the organization.
“We are about helping people live daily with Parkinson’s,” she said. “What’s the best way you can live with Parkinson’s and have a good quality of life? That’s our mission.”
Marjorie Johnston, right, helps Tom Yancy extend his reach as John Merriman stretches to the left during an exercise class for people who have Parkinson's or other issues with mobility on Wednesday, January 4, 2017 in the Fleischmann Park community center. The hour long class featured a series of stretches and balancing exercises. (Photo: Katie Klann/Naples Daily News)
Chaney and Jacqueline Urso founded the organization 20 years ago. The two met during their college years at Michigan State University and have been friends ever since. Urso eventually moved down to Naples in 1995 and quickly noticed that her father, diagnosed with Parkinson’s disease, was struggling to find any sort of support group.
“They had a group that would meet once a month for January, February and March,” she said. “It wasn’t enough.”
So the two teamed up to grow the group, picking up more members until it was forced to incorporate into a nonprofit after a local lawyer made the first donation of $64.17.
Marjorie Johnston leads the group in arm raises during an exercise class for people who have Parkinson's or other issues with mobility on Wednesday, January 4, 2017 in the Fleischmann Park community center. The hour long class featured a series of stretches and balancing exercises. (Photo: Katie Klann/Naples Daily News)
Now we have a budget of $250,000 a year,” Urso said.
The 1,800 members supply most of the money, which goes right back into support programs. There are bowling and golf groups, support sessions, speech therapy and various exercise classes for people with Parkinson’s.
“We’re at the point where we need to grow,” Chaney said. “Many of our classes are set for about 25 people — some have up to 40 people show up.”
Even after 20 years growing and sculpting the organization, the two founders are volunteers. In fact, only exercise trainers and a couple office personnel are paid — everyone else volunteers their time, including Jeanne Malone.
“There’s nothing like this anywhere else,” she said. “This is the reason we stay down here all year. If we weren’t here, we’d just be feeling sorry for ourselves.”
Jeanne’s husband, Will Malone, has Parkinson’s disease. The couple searched for some sort of support group near their home in Pennsylvania but were always disappointed.
“They were one session every month, usually at a nursing home,” she said. “It was so depressing.”
Jeanne Malone eventually found a group just for caretakers of people with Parkinson’s, such as close family members. She soon learned about the Parkinson Association of Southwest Florida.
“We came back (to the organization) after buying a condo down here, and we’ve come faithfully afterwards,” she said. “Every opportunity we can to go do anything, we go. It’s like a family.”
Togetherness and friendships are very important to the folks at the Parkinson Association, Chaney explained.
Rob Citrin reaches out with her left arm during an exercise class for people who have Parkinson's or other issues with mobility on Wednesday, January 4, 2017 in the Fleischmann Park community center. The hour long class featured a series of stretches and balancing exercises. (Photo: Katie Klann/Naples Daily News)
“Our biggest positive is a real family-like atmosphere,” she said. “There’s socialization — people go out to the bowling events or golf outings or our lunch brunch.”
Stan Weiner and his wife Joy Duval were lucky to find the association, Joy explained.
“We were so totally isolated,” she said. “We didn’t know where to go. We didn’t know anyone with Parkinson’s. Then we found the community.”
The couple aren’t normally the type to go out and get involved in such support groups, Duval explained. But after a few sessions, she knew it was the right place. Weiner now goes to voice lessons, discussion groups and just started with a boxing class.
“It’s extremely important,” he said. “Without them, I wouldn’t know what to do to help me. Now I’ve met a lot of people that are in the same situation. I don’t know what I’d do without them. You get to meet people, and that’s one of the biggest things. You meet a lot of people, talk to them — find out about their problems and talk about yours.”
Chaney and Urso plan on sticking with the organization into the future but have larger plans in the works.
“I want it to be self-sustaining,” she said. “I’ve always dreamed of our own facility where we go from diagnosis to death with Parkinson’s.”
Tying in with a clinic to help people immediately after diagnosis and expanding onto an assisted living space in the same facility is a hope, Chaney said.
“We want to keep helping them far into the future,” she said.
http://www.naplesnews.com/story/news/local/communities/collier-citizen/2017/01/06/swflstrong-helping-people-live-women-made-their-mission-help-those-coping-parkinsons/96156552/
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