Yoga instructor Lisa Recchione demonstrates a stretch designed to open up the shoulders to the group, including in the front row from left, Joe Puzan of Largo and Betty and Al Harper of Pinellas Park.
LARGO – The Feb. 6 meeting of the Starkey Parkies, a support group for those dealing with Parkinson’s disease, began with a vocal exercise, not unlike ones professional actors and singers use to warm up, explained facilitator Ken Fradain.
The circle repeated tricky syllables and complicated tongue twisters, each doing their best to enunciate and project the sounds. Speaking clearly and loudly is just one of the challenges those suffering from Parkinson’s disease can face on a daily basis.
“Fortunately for me, I have not been affected that way yet,” said Fradain, who acted as group facilitator for the first time that meeting. “(For) some folks, the Parkinson’s disease affects the muscles in their throats and causes problems with swallowing, and sometimes they can’t speak loud enough.”
The Starkey Parkies is a grassroots group that meets at the Grand Villa on Starkey Road “to provide a welcoming atmosphere of support,” explained group leader Theo Betjemann. Many of the attendees came with a spouse or partner in their fight against the disease. One caregiver invited the group to the funeral for her mother, who had recently passed away of the disease.
Aside from moral support, the monthly meetings are a forum to share exercises to forestall the effects of the disease, the latest medical tips and developments and stories that inspire each other to continue fighting.
“People need this kind of group,” said Maria Portes of Largo, who has fought against the disease for almost 14 years. “Honestly, it’s a very hard disease. I wish people would get educated about it.”
Portes was one of the initial organizers of the group, which first met in November. The organizers have been pleased by the positive response the group has had, evidenced even by the attendance of that first meeting.
“We got so many people. We couldn’t believe it. It was overwhelming,” Portes said.
The original facilitator of the group, Marcy McCall, an author of a book on the disease, had to step down due to an unrelated illness. But the area set aside for the group at the Grand Villa was still filled with attendees during its most recent meeting.
Portes said many people who don’t experience Parkinson’s disease firsthand still have a narrow view of it.
“They come to something like this (and) they think they’re going to see a room full of people shaking, but that’s not what it is about,” she said. “The stiffness is my major complaint. It’s hard. At my stage now, I have a lot of trouble walking sometimes.”
Even members of her own family don’t completely understand. Once, when Portes was visiting with family about six months ago, she began to leave the room and found herself stopped.
“All of a sudden, I just couldn’t walk. I just froze there,” she said.
Her brother asked her what was wrong.
“I said, ‘Nothing I’m frozen.’ He said, ‘Why don’t you put a sweater on?’ I was cracking up,” Portes said. “My brother, you have to get a little bit more educated about Parkinson’s.”
The biggest challenge is how unpredictable the disease can be, she said. The medication sometimes just doesn’t work as well as it should.
“I can be feeling fine now and 10 minutes from now, I’ll be a mess,” Portes said. “Everybody always says, ‘You look so good,’ but they don’t know what we walk through. You have to walk in other people’s shoes.”
On the other side of the room where the group met, Bill Ohsa of Largo carried refreshments back to his seat and suddenly couldn’t stop his hand from spilling the plastic cup of red juice.
“I get shaking and I can’t stop,” the retired construction worker explained as he recovered and began mopping up the floor.
Arlene Dawson, sitting nearby, was unfazed by the spill. She lives at the Grand Villa, having given up her doublewide trailer in Clearwater, along with her independence, about three years ago, shortly after being diagnosed with Parkinson’s disease. The ongoing fellowship and the information the group provides is important, she said. Her priority now is to make sure her brother, who lives in Ohio and was diagnosed with the disease before she was, also has a support group he can rely on.
The ease and understanding that comes with socializing with others familiar with Parkinson’s is key, explained Patty Nuytten of Largo, another organizer of the Starkey Parkies.
“You can get very isolated with Parkinson’s. My voice is particularly affected, so I don’t talk much on the phone. And it’s just hard to coordinate things,” she said. “You find yourself pretty much just staying at home if you don’t do something like this.”
There tend to be two types of the disease. Nuytten is more affected by the “stiff, rigid” side of Parkinson’s, as opposed to the “shaky kind of Parkinson’s,” she said. She agreed that sudden onset of symptoms makes the disease particularly challenging.
“One minute, you could be fine and five minutes later, you can barely walk across the room,” she said.
During a socialization break, Anneliese Tedeschi of Pinellas Park sought out fellow group member Mike Mugharbel of Seminole.
“I noticed he walks without the walker now,” she explained.
Tedeschi had a fall recently and broke her neck. She has healed enough to no longer need the halo brace, but hasn’t fully recovered.
“Now I can’t get out of the wheelchair,” she said. “Since he got rid of his walker, I was trying to find out (how).”
Mugharbel said he tackled various kinds of exercise on his own to regain his mobility.
“I’m proud of it,” he said.
“You look like you’re doing very well,” Tedeschi commented.
Staying active is particularly challenging to those suffering from Parkinson’s, but it’s key to forestalling the progression of the disease, group moderators emphasized.
In fact, the Feb. 6 meeting included a yoga demonstration designed to enhance mobility and stretch tense muscles.
Bob Etchells of Largo said hikes and biking were his primary forms of exercise.
“I’m not sure how safe that is,” he said with a smile, explaining that the other bikers on the Pinellas Trail move a bit faster than he does.
Etchells, a retired computer engineer, said the camaraderie and awareness of the latest developments in Parkinson’s made the Starkey Parkies group useful. He’s also discovered a better doctor through recommendations of its members.
“It’s inspiring,” said Robin Hirschberg, who is relatively new to the supportive community, having only been diagnosed with Parkinson’s in October.
The members of the group are sometimes more knowledgeable about the disease than his own neurologist, Hirschberg said. Another attendee, who did not want to give his name, agreed: those who suffer from Parkinson’s are able to recognize its symptoms in others, often before doctors do.
Aside from encouraging its members, the group hopes to raise general awareness of the disease, said Betjemann.
“‘Parkies’ can continue to live a meaningful life through personal awareness, improved self-care, socialization and various therapies,” she explained. “All of this becomes worthy of celebration when, through support of each other and the acceptance and embrace by the mainstream community, we are able to create victories over daily challenges created by the disease.”
The group ended with a vocal exercise. As a group, the Starkey Parkies voiced healthy affirmations aloud.
“My intention is to maintain health and wellness for myself,” they said together. “I am grateful for the health I have now. Opportunities to reverse any and all symptoms always come my way.”
The group meets first Thursdays, 1:30 p.m., at the Grand Villa, 750 Starkey Road in Largo. For more information, email Theo Betjemann at firstname.lastname@example.org