Last night I took my husband Jake to Blueberry Hill for his birthday. We were able to see Chuck Berry perform in the Duck Room after trying to get tickets for five or six years. Since Chuck performs only once a month, you have to gp online immediately as soon as sales start to buy tickets. It was worth the wait: Chuck is 87 and still rockin’ and rollin’. I loved his music when I was a teenager and he was wild and free. I loved him yesterday too. This is certainly a tamer Chuck than the guitar legend. We sat front-row-center and could see how management puts a list of songs with keys in huge letters on the floor. He got the key wrong once anyway to the annoyance of Charles Berry, Jr. who performs along with his Dad and sister Ingrid. Right key, wrong key, April 23rd was Chuck’s 203rd consecutive performance at Blueberry Hill. How cool is that?
A lot of people his age would be resting on their laurels with their feet up in front of the television. Instead he is singing and playing the guitar for over an hour, sweating under the hot stage lights. Even putting one foot out and sliding on the other in a modification of the dance he pioneered – the “Duck Walk.”
That’s why I admire Lori so much. Like Chuck who won’t let the diagnosis of advanced age put him out to pasture, she is living her life to the fullest despite the diagnosis of Parkinson’s. When she first heard she had the disease, she says, “I felt like I just wanted to sit in a corner and cry until I died.” Then something powerful happened. She realized Parkinson’s would never kill her, so she determined to make the absolute best of her life. And she has. “I can choose to not let this get to me. And, if it does, then I can figure out another way to fight. And another way after that. I can beat this.”
I learned long ago that I think better after I exercise so I do my best to get some form of vigorous activity before I write. I try to exercise every day, but many weeks I can only do six days. Three times a week I practice a workout routine with a half hour on the bike, plus weights, crunches and stretches. I mix it up with yoga, tennis and three-mile walks with friends. I feel like it gets the blood pumping to my brain.
Since I figured this routine out myself, I was deeply interested to learn that exercise is a key part of Lori’s attack on Parkinson’s. Her specialist, Dr. Michael Rezak, says that Lori’s exercising has definitely slowed the progress of the disease. Lori dedicates four hours a day to exercise. She stretches when she gets up. For endurance and strength, she walks on the treadmill and lifts weights. Ballroom dancing and tai chi improve balance. Lori plays the harp develops finger control so Lori can help prevent the trembling hands that are a symptom of her disease. As a former aerobics instructor, all this comes naturally to Lori. While P.D. has taken away many things she liked to do, like biking, skiing or roller blading, but she is so much better that she can play golf again.
We were pleased to read that Dr. Dennis Keane, physical medicine and rehabilitation physician, thinks a dedicated exercise program will not only control the symptoms of Parkinson’s but may slow its progression or even prevent its manifestation. He says, “Our brains have neuroplasticity. That is, with activities such as exercise, we stimulate our brains to create new nerve pathways to take over the role of what we may have lost from a neurological disorder.”
I have Alzheimer’s in my family. I hope the same goes for Alzheimer’s.
I did not aspire to be a caregiver, but that is what I have become. I have balked and struggled, but I want to do my best to help two women, one very young and the other very old.
Last year I became a caregiver for my 17-year-old daughter when she was diagnosed with epilepsy. Two days after we got back from dropping her off at college, my 92-year-old mother had a stroke, and later a heart attack and a bleeding ulcer. Now I am taking care of my dear mother too.
From Lori and Bob, I have learned that caregiving is a love story. She says Bob reminds her of the gospel song: “He walks with me, and he talks with me and he tells me that I am his own,” even though this of course refers to a much greater love and power than the human. You give care for someone because you love her or him. You take on the task rather than delegating it because this is not a job. It is life.
Caregiving is a dance where the person giving care and the person receiving it wrap their arms around each other and move in time together to the music. Bob says that it is important for the person being cared for to respond with love. “You must love the people who love you. Their love and care demands reciprocity. You can’t just expect or demand or even accept their love and care without convincing them that you love them back. If nothing else, just tell them.”
The dance of caregiving is not a grim duty. The caregiver both gives and receives joy, as does the person being cared for. Lori advises: “Make constant ‘deposits’ into your energy bank accounts with hugs, sunrises, and laughs. They will allow for big withdrawals when you get hit with the unexpected.”
in my next blog.
Lori Patin brings so many wonderful qualities to her struggle against Parkinson’s – strength, persistence, determination. Still the quality that impresses me most is her attitude. Now attitude is a very difficult quality to pin down. The best way I can describe Lori’s attitude is to show a great example – her attitude towards hallucinations, a common side effect of Parkinson’s meds.
“One funny thing was that I started having hallucinations,” Lori told me. “I know that sounds really quite odd that I find those funny, and my family certainly was not laughing, but I wasn’t scared at all. I would get to talk to my father who has been dead for years or to my brother who lives in Ohio. Or I would see lots of animals, dogs, coyotes, even a zebra. Once I told Aly that she was in the living room delousing a zebra. You have to laugh at that one. These hallucinations weren’t transparent; they had form and shape and were as three dimensional as you or I. They didn’t scare me because I knew they were hallucinations, partly because it wasn’t logical to have my dead father in the family room or a zebra in the living room and partly because I just knew it was not real.”