If severe illness limits mobility, what do you do? If sitting is the safest place besides bed, how do you stay fit? More important, how can you help someone in such a condition?
That was the challenge when I became caregiver for my Parkinson’s afflicted father in law. The disease had taken Ken from a robust 220 lbs to a skeletal 140. Worst of all, it robbed him of his motivation.
This poor man was as close to the end of his life as anyone you’ve seen in a medical drama. He was ready to go, except he didn’t die after I volunteered as his hospice helper and brought him home for his final days.
If you believe in the virtues of fitness, you can’t leave someone in their bed if you’re the decision maker.
How does someone with Parkinson’s Disease respond to exercise? It’s one of the best weapons to use against the movement disorder. Recent studies cited in the New York Times explain how exercise adds new neurons to adult brains as well as slow the brain’s decay.
But how do you get someone to accept those findings when they are debilitated? Is it more difficult than working with so-called healthy people?
My dad in law was so far gone he didn’t respond to anything. It was all he could do to breath, but he would repeat a movement if I guided him through it. I asked him to raise his arms. He was too weak to hold them high, so I helped.
“That’s how fighters start, they raise their hands,” I said, holding his wrists. “That’s you, and you can be any fighter you want. Muhammad Ali? Rocky Marciano? Sugar Ray Robinson? Thomas ‘The Hitmam’ Hearns? Anyone. Who is your favorite?”
“Joe Louis.”
“Joe Louis?”
“Yes.”
“Yes.”
“Good choice. World heavyweight champ for twelve years. Seemed to fight all the time with his ‘Bum of the Month Club.”
With the goal of starting someone with advanced Parkinson’s Disease on an exercise program, first be sure you have their attention. One way is to start a conversation and embellish questions and answers until the person you’re talking to asks for less baloney.
Once they ask for something, you’ve got their attention.
“If you’re Joe Louis, am I Max Schmeling?”
“Schmeling.”
“Then let’s go. Round one”
I moved his arms in rhythm to jab, jab, cross then moved to the other side with jab, jab, hook.
If they’re strong enough, let the other person hold your hands while you gently push and pull.
I put one of Ken’s hands back to his side, then tapped his cheek with mine. He flinched and gave me a ‘what was that for’ look.
“Max Schmeling knocked Joe Louis out in their first fight. You just went down in twelfth round, Joe. Let me know when you’re ready for the re-match.”
“I’m ready.”
Using sports to introduce exercise slowly builds enthusiasm, and the exercise slowly changes the brain. The more complex the exercise, the more new connections you make in the neural network.
From big fights to running races, Ken improved mentally and physically. From the front of his chair, I lifted Ken’s feet to where his legs were almost straight. By lifting and lowering his legs, he got the feeling of walking. To be sure, I narrated a race.
“Humpty Dumpty sat on a wall. Humpty Dumpty had a great fall. All the king’s horses and all the king’s men couldn’t put Humpty together…”
“Again,” Ken said.
“That’s right, they couldn’t put him back together, and he’s talking about racing you and beating you. He’s a broken egg and he thinks he’s beating you? Come on. When do you want to move your legs again?”
“Now.”
Progressing from bed exercise to chair, then finally to his feet, Ken made strides. By fighting Joe Louis he regained enough strength to feed himself. When the talk was about feeding tubes and permanent bed rest, eating at the dinner table was a huge win.
By racing Humpty Dumpty from his chair, Ken was ready to move to his feet.
First it was a standing position.
“And here comes Dumpty at the turn and heading for home. He’s barreling down the stretch, neck and neck at the wire. It’s a photo finish and Humpty Dumpty wins again.”
Then one step.
“There’s a fresh face at the track, ladies and gentlemen, and it belongs to Ken. Can he beat the egg? Does he have enough in the tank to take down Humpty Dumpty?”
From one step to many, the days rolled by. Ken used a walker to take laps around the house and eventually outside with assistance.
“The two racers face off before their next race. Humpty Dumpty says it’ll be a fluke if he loses. He says Parkinson’s or not, he’s winning. What do you say to that, Ken? What do you want to tell such an unsportsman-like character?”
“Nuts. Let’s go.”
Getting someone to move is good; getting them to push their boundaries, whether defined by disease or attitude, is even better.
If you have disabled people in your family, step up and talk them through a workout. The results might surprise you. During your own workout you may start feeling their company.
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