Health
Cissy Lacks: A message from a friend with Parkinson’s
April is Parkinson’s Awareness Month, and the million of us diagnosed with Parkinson’s disease in the United States are acutely aware of the condition every day of the month.
Members of the Evanston Parkinson’s support group, Movers and Shakers, would like to share information about our experiences with Parkinson’s disease with people who do not have the disease.
Nearly everyone in the support group recognized and thanked Michael J. Fox for his miracles in Parkinson’s awareness, and his fame, fortune, optimism, and good nature in helping Parkinson’s research and publicity. I’m here. But we also think it’s important to recognize that he’s become the public face of Parkinson’s disease. His appearance is the way people think of Parkinson’s disease, including tremors, tremors, and uncontrolled movements.
Having a diagnosis terrifies us because that vision fosters fear of the inevitable progression, whether we have symptoms at the time or not. is important to recognize.
In our support groups, we often talk about the fact that Parkinson’s is not a one-symptom disease. For example, some people show only a few of their motor impairment systems, while others show many. Acknowledging these differences is disturbing for patients and is often misunderstood by non-patients.
My neurologist, Dr. Asvini Premkumar, told me not to worry. She would do it for me, she said, and she would tell me when I should worry. That’s easier said than done.
The people in our support group are at various levels of disease progression.
“We want people to know that Parkinson’s is more than just a movement disorder,” said Dave Lapaglia. “And it’s different for everyone. I have muscle stiffness and tremors in my left hand. It’s nice to have someone listen when it’s noticeable. Most people don’t.”
Howard Zilovich has more non-motor symptoms. “It affects my energy levels and sleep. But it’s also true that they haven’t seen my symptoms.”
Judy Fiatag has dyskinesia. This is the medical term for the pronounced, uncontrolled, constant movements resulting from years of medication for early-onset Parkinson’s disease. She deals with this condition with a sense of humor.
“I know I look weird,” she says, adding, “But I’m not weird. At least most of the time.”
I want you to get over your awkwardness when you’re together. She wants to be asked about what she has.
“It’s much better than avoiding me or being complacent,” she said.
Having a body on the move takes a lot of energy, but Fiertag manages a full schedule of daily activities, including cooking, tandem biking with her husband, walking 10,000 steps, dancing, and boxing.
Hillary Morrison sobbed at her first physical therapy appointment. Because she was so scared of the future and she didn’t like exercise.
Vigorous exercise is widely recommended to slow the progression of Parkinson’s disease.
“I was told I had to exercise, so I took that advice seriously,” she said. “Now I have a regular exercise program. [for people with Parkinson’s] I keep my weight under control, I keep my mood stable, and I keep in touch with people several times a week. It is ”
However, even after following all exercise recommendations, it may not work for everyone.
Heather Wolens participates in Rock Steady Boxing and exercises regularly.
“For me, the worst part about Parkinson’s was not being able to care for my grandchildren after I started falling. It was so sad,” Warrens said. “I worry about myself and what my life will be like.
Wolens testified before members of our congressional delegation at a recent hearing on HR 2365, the national plan to end the Parkinson’s Act. Her testimony was so moving that it reportedly brought her representatives to tears.
Jim Young, founder of Evanston Movers and Shakers, wants people to know that HR 2365 is so important for bringing the attention, focus, and resources to beat this disease.
“Parkinson’s is a degenerative disease, so we need this legislation passed as soon as possible. As with polio, if research is adequately funded, the disease can be eradicated,” he said. said.
Morrison’s forthcoming Parkinson’s activism could be an opportunity for special friendships. Relationships become more intimate. This is what happens when people share feelings and fears that they might not show to others.
Also, reactions to experiences can be unexpected. For example, I like to hear my Parkinson’s friend play the piano. Not only because of the way she plays, but because she hears her fingers loosen as she continues to play. It’s the sound that I enjoy. Of course, this is not why we enjoy hearing someone play the piano.
Another member said one of her favorite things about support groups was, “I can make Parkinson’s jokes and people laugh and not make them feel uncomfortable. And of course, there’s humor behind the name of Evanston’s support group, Movers and Shakers.
One of the words that keeps coming up in our group meetings is the mantra “intent.”
Dopamine in our nervous system directs automatic responses in our speech and actions. About 80% of dopamine is lost when Parkinson’s symptoms begin to appear. But the intentional can replace the automatic. And you can teach the technique of intention.
People with Parkinson’s may speak too quickly or too quietly because they are not speaking intentionally.
If I fall into a bad speech pattern, especially if someone knows I’m working on intentional speech, feel free to remind me.
Keeping up with Parkinson’s research may feel more important to those of us who have the disease, but it’s important for everyone to know about key discoveries. Justify investing resources in
Recently, researchers announced they had made a giant leap with the discovery of what is officially known as the Parkinson’s disease protein, called aberrant alpha-synuclein. With better treatment for sick patients, newly diagnosed patients may never show full symptoms.
Well, that’s what everyone should know this month, and in the months to come.
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