Parkinson’s patients find support in CLIMB program
By Navar Watson
Carol DeBoy knew nothing about Parkinson’s disease when her husband, Larry, was diagnosed in 2003. She hadn’t noticed the subtle first symptoms. He blinked abnormally. He wasn’t swinging his arms while walking. He slumped his shoulders.
His conditions only worsened when, after a deep brain surgery in 2012 to minimize slowness and stiffness, Larry developed a serious brain infection that gave him a 1 percent chance of survival.
“He started life all over again, really. Back to square one,” Carol said. “He’s not the person he was, nor will (he) ever be. But he has a quality of life which he tolerates very well.”
Parkinson’s stripped Larry of many basic, physical abilities. He had to relearn to feed himself, bathe himself and walk. The doctors thought he would never accomplish these things again.
There is no cure for Parkinson’s disease, and every case is different. But at The CLIMB program in Noblesville, the DeBoys have found help and support in those fighting the same fight.
A branch of the Indiana Parkinson Foundation, The CLIMB program operates six days per week. Meeting in the Community Health Pavilion Noblesville, 9669 E. 146th St., personal trainers and volunteers guide Parkinson’s patients through exercises to help combat physical restrictions that come with the disease. Carol said the exercise helps “retard the progression” of the disease.
“It keeps them moving and keeps them from getting stiff and rigid,” trainer Kim Williams said. “It helps them mentally to stay in a positive cycle versus a negative cycle.”
Williams is “largely responsible” for Larry’s abilities. Williams, who knew very little about Parkinson’s coming in, said she “fell in love” with The CLIMB when she joined a year and a half ago. The patients continually impress her with their courage and perseverance.
“These people are just so courageous and so strong to come in here every day no matter what ailment they’re feeling, no matter how horrible they feel,” she said. “They are strong people, and they are fighting.”
Head trainer Andy Durnell called The CLIMB the “hands-on entity” of the foundation. He said it works like a research tank as he and the other trainers see what exercises work with people who have different body types and are in different stages of the disease.
“The amount of trust they have for us is amazing,” Durnell said. “You build the trust so you can get them to go to a new place. It’s just so rewarding to see somebody accomplish something that they would have never thought (they could).”
Alongside personal trainers, volunteers help guide patients in their exercises. Many of the patients’ spouses help as well.
“Everybody works together, not only between us and them but also between one another,” Williams said. “They have this fellowship. It is amazing. They are each other’s cheerleaders.”
This supportive atmosphere not only benefits people like Larry but also people like Carol.
After Larry’s crippling brain infection, Carol had to learn skills she never thought she would have to learn – she had to do taxes, organize files and balance the checkbook and basic things like how to take care of the house, the car and investments all by herself. On top of that, she had to learn how to take care of a spouse on her own. Her peers at The CLIMB, many of whom had dealt longer with the disease, were able to help.
“There’s a lot of sharing of information about getting ready for the future,” Carol said. “It’s nice to talk to people who really understand.”
The CLIMB program has learned not to close its doors, even in hazardous weather. If there is an ice storm, patients will show up anyway. Though the program meets 9 to 11 a.m. Monday through Saturday, Durnell said they are “in dire need” of expanding their hours. This would spread sessions out and give the trainers more one-on-one time with patients.
“It is family,” Durnell said. “I can’t imagine not having these people in my life.”
As for the DeBoys, Carol plans to continue taking Larry to The CLIMB as long as it continues to benefit him. After 48 years of marriage, she said she had “no doubt” her duty was to provide for him as he had once provided for her and her children.
“It’s an effort. You have to learn to change your expectations and accept a different living condition,” Carol said about living with Parkinson’s in the family. “This is not his disease. This is our disease…. I’m sick at heart that Larry is like this. He didn’t deserve this … But he’s got it.”
The Indiana Parkinson Foundation began in February 2009, shortly after Don Waterman was diagnosed the year before. Addie Cunningham, Waterman’s youngest daughter, and her three siblings created an organization to raise money for research on a cure. They began fundraising by selling strawberry shortcakes at the county fair, donating their money to the Cell Therapy Foundation in Indianapolis. But they quickly learned that the money they raised was “nothing” compared to what bigger organizations were raising.
“We felt like God was directing us to help people with Parkinson’s right now,” Cunningham said.
That direction started The CLIMB program, which first met weekly at White River Christian Church in Noblesville. Cunningham said 11 people attended the first session and it continued to grow to about 60 people. The foundation relocated to the Community Health Pavilion, where they meet now. It operates like a gym membership where patients pay monthly or weekly fees, depending on how often they attend the classes.
On May 24, the program held a workshop in which they trained anyone wanting to start their own CLIMB programs. Already, CLIMB programs exist in Greenwood, Indianapolis and Notre Dame. More training workshops are scheduled for October.
For now, the foundation is planning its second biggest fundraising event of the year, a run at Witten Park in Fishers on Sept. 20. Last year, more than 500 people participated.
Cunningham said the foundation has also hired a new executive director, Rebecca Buxton, who has more expertise in fundraising, grants and areas “that we haven’t even tapped into.”