April 11, 2016
The ladder drill kept getting the best of Tommy Kemp.
A simple rope ladder laid out horizontally on the floor of the Anderson-Cohen Weightlifting Center. Kemp could walk across it just fine.
But when asked to avoid touching the yellow handles or to step his left foot outside and then step back in?
Kemp told his foot to move, shouting at it in his mind. Nothing happened.
“It won’t listen to me,” Kemp said. “It doesn’t matter if you hold a gun on me, it won’t move.”
The 64-year-old has battled Parkinson’s disease for eight years, and until a few weeks ago, it was a battle he had nearly given up fighting.
And it was one he wanted to fight alone.
Kemp was diagnosed shortly after winning a personal battle with high cholesterol. His doctor told him he was headed for Type 2 diabetes before he changed his diet and lost weight.
The Parkinson’s diagnosis left him in disbelief.
“At first, I thought I could beat it,” he said. “I had beaten my cholesterol and my weight.”
For years, he kept his diagnosis from friends, family members and co-workers. He worked as a computer analyst for 33 years and did everything he could to keep his production level from declining.
“Up until the last year he quit (his job), he was able to fool everybody,” said his wife, Donna. “The next year, he wasn’t fooling anybody. But he tried.”
Photography, golfing, traveling — he lost the ability to do everything he loved.
Kemp walked into Anderson-Cohen dejected, under the care of Donna and his sister, Penny Lightfoot, unsure of what the new Get Excited and Move exercise program, designed specifically for people with Parkinson’s, could do for him.
The first time he tried to walk across the ladder, he fell straight to the floor.
GEM of a program
Michael Cohen, who manages the weightlifting center partially named after his father, Howard, received a call a few months ago from Sarah Bernzott, the executive director of the Savannah Parkinson’s Support Group. Bernzott told Cohen about a program called Rock Steady Boxing, which is based in Indianapolis and helps Parkinson’s patients live out active lifestyles through boxing. Scott C. Newman, the man who started Rock Steady, found that boxing created an improvement in his health, agility and energy.
Cohen researched the program and thought with the resources available to him at Anderson-Cohen, he could create his own program, which he called GEM.
Cohen took a trial class of about 20 patients and ran them through his six-week Level 1 course, which they completed March 31. Now they’re on to Level 2. Word has gotten out about the program. Another wave of participants is getting ready to start Level 1, and Cohen said he has classes completely booked for months ahead.
Early on, Cohen decided his program didn’t need to be limited to boxing.
“It all started with boxing,” he said. “I didn’t like its one-dimensionality. I needed them to understand other things. I’m big on variety.”
Through simple, repetitive exercises, the brain can re-establish connection with nerves affected by the disease, he said. Level 1 introduced patients to basic exercise movements and was mostly pretty simple with just one chief goal in mind: for the patients to know they can do it. Cohen’s first course has been somewhat experimental, and not everything has worked, but he hasn’t lost a single patient, he said.
“I knew we had hit the right chord when after the fourth class, everyone was still coming.”
Bernzott, who works with most of the class members regularly in her support group, said the difference made in just six weeks has been remarkable. Patients are doing things they had thought they’d never be able to do again, she said.
“They really thought they would decline from here,” she said. “Now they’re discovering there’s so much they can do.”
And there’s more to come at Level 2, and Cohen said his students will be even more surprised at what they can achieve. Some will be lifting weights over their heads, and the class will even extend to the indoor pool at Savannah State, where they’ll focus on overcoming water resistance, Cohen said.
“It’s about getting out of your comfort zone and making yourself do something,” he said.
Moment of truth
Of the patients that comprised Cohen’s first class, Kemp has the most progressive form of the disease. Gary Pauley, meanwhile, is broad-shouldered 52-year-old man who can send the punching bag swinging backward and is the group’s most vocal supporter.
But the disease has been just as difficult for him to accept. He denied it until Diet Mountain Dew, his favorite soft drink, hit him with the reality. He pulled the can of soda from the fridge in a convenience store, and dropped it. The can landed with a thud and cracked open, the soda spewing. He grabbed another one. Same thing happened. His fingers couldn’t hold a grip on them.
He said the convenience store clerk kicked him out for being wasteful.
“I was probably in denial for two years,” Pauley said. “It initially started with two fingers on my right hand that twitched all the time. Then I started losing strength in my right arm.”
Pauley spent 21 years in the U.S. Army as a military police officer and retired in 2002, looking forward to years of long-distance running as his recreation.
He was diagnosed in 2009. Even after that, he still competed in three marathons and nine half marathons. But he hasn’t been able to run the last two years.
“Everyone likes to think after they retire, the best part of their life is ahead of them,” he said. “It was a real kick in the shorts.”
Pauley also knows what it’s like to feel defeated by Parkinson’s.
“Alzheimer’s is the disease where you no longer recognize your family. Parkinson’s is the disease where your family no longer recognizes you,” he said. “It’s the feeling that your body is failing you.”
At one point, his hands got so bad he couldn’t button his shirt or tie his shoes. So now he just wears plain shirts and slip-ons.
Pauley is one of the few in the class who doesn’t have a caretaker, still clinging with all his strength to his independence.
“That’s the one thing I refuse,” he said. “That’s the next step I’m trying to fight. I still feel I can take care of myself.”
The GEM program reinforced that idea to him, he said.
“It’s just the fact I can do everything better. I can see the strength coming back, and I can see my agility getting better.”
Like so many in the class, boxing gave him the most gratification, and it would have been easy for others to think he didn’t have the disease the way he treated the bag.
“You know that rush you get when you’re in a competition? You’re going for something, and you’re actually going to beat it? That’s the type of rush I get when I punch that bag.”
Emotional outlet
With the variety of activities GEM offers, Cohen said it was OK if a patient just locked into one he’s good at.
Tommy Kemp liked hitting the punching bags as well. Maybe it was because it felt like the best way to relieve the frustration, as if the disease itself was in front of the patients and they were given the green light to take their best shots. He put on his own pair of boxing gloves along with everyone else in the class and threw his best left and right jabs at the bag.
Right behind him was Donna Kemp with a pair of gloves of her own. Lightfoot was also there with him, sporting pink gloves.
The program is as much for the spouses and caretakers as it is for the patients. Once the disease progresses, there’s very little the patients can do on their own, and daily life can become exhausting for someone like Donna.
After the first couple of weeks, with everyone at the punching bags, “It’s hard to see who are the folks with Parkinson’s and who are the caretakers,” Lightfoot said.
But Tommy said he’s not giving up on the ladder. In fact, he bought his own and practices at home.
Donna said she doesn’t expect a cure from the program, but step by step, she’s getting pieces of her husband back she thought were gone. Smiling might be his best activity right now.
“Anything that improves our quality of life,” she said. “That’s what we’re looking for at this point. I want him to be happy again.”
A smile broke through Tommy’s trembling mouth when she spoke.
“See,” she said. “That doesn’t happen very often.”
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