Cissy Lacks: A message from your friends with Parkinson’s

April is Parkinson’s Awareness Month, but the 1 million of us in the U.S. diagnosed with Parkinson’s disease are acutely aware of the condition every day of every month.

Members of Movers and Shakers, the Evanston Parkinson’s support group, would like to share with people who don’t have the disease some information about our experiences with Parkinson’s.  

Almost everyone in the support group recognizes and appreciates that Michael J. Fox has worked miracles for Parkinson’s awareness, lending his fame, fortune, optimism and good nature to Parkinson’s research and publicity. But we think it’s also important to recognize that he has become the public face of the disease, and his appearance is how people think of Parkinson’s: tremors, shaking and uncontrollable movement.

That vision scares us when we get our diagnosis because it feeds a fear of inevitable progression, regardless of whether or not we have symptoms at that time. It’s important for friends and family to be aware of that fear when they have conversations with us.

In our support group, we frequently talk about the fact that Parkinson’s is not a disease with one set of symptoms. For example, some people show only a few motor impairment systems, while others show a lot. Acknowledging those differences is worrisome for patients and often misunderstood by non-patients.

Dr. Asvini Premkumar, my neurologist, tells me, and I suspect her other patients, that I shouldn’t worry. She tells me she will do that for me and she will tell me when I should be concerned. That is easier said than done.       

People in our support group are at different levels of progression of the disease.         

“I want people to know Parkinson’s is more than a movement disorder,” Dave Lapaglia said. “And it’s different for everybody. I have muscle stiffness and a left hand tremor. When it’s noticeable, I’m happy when someone asks me about it. Most people don’t.”

Howard Girovich has more non-motor symptoms. “It affects my energy level and my sleep. It’s hard to get to sleep, and I wake up a lot. People tell me that I look good. Maybe they expect I wouldn’t be doing as well with a Parkinson’s diagnosis. But it’s also true that they are not seeing my symptoms.”         

Judy Fiertag has dyskinesia, the medical term for noticeable, uncontrollable and continuous movements resulting from years of medication for early-onset Parkinson’s. She handles the condition with a sense of humor.

“I know I look odd,” she said, adding “but I’m not weird, at least not most of the time.”

When people are with her, she would like them to get over their awkwardness. She would like them to ask her about what she has.

“That’s a lot better than avoiding me or being standoffish,” she said.

Having a body that moves constantly takes a lot of energy, but Fiertag manages a full schedule of everyday activities, which can include cooking, riding a tandem bike with her husband, walking her 10,000 steps, dancing and boxing.

Hillorie Morrison sobbed at her first physical therapy appointment because she was so afraid of the future and also because she didn’t like to exercise.

Vigorous exercise is universally recommended for slowing the progression of Parkinson’s.

“I was told I had to exercise, and I took the advice seriously,” she said. “Now, I have a regular exercise program [for people with Parkinson’s] of walking, swimming, dancing and boxing, which maintains my weight, stabilizes my moods and brings me in touch with people several times a week. Strange as it might sound, my overall health is better than it was four years ago when I was first diagnosed.”

It doesn’t go as well for everyone, however, even after following all the exercise recommendations.

Heather Wolens attends Rock Steady Boxing and exercises regularly. 

“For me, the worst part of having Parkinson’s is that after I started falling, I could not babysit for my grandchildren. I was so sad,” Wolens said. “I am worried about me and what my life will become.  But I’m also worried about my family’s life, and they are constantly worrying about me.”

Wolens testified before members of our congressional delegation at a recent hearing on HR 2365, the National Plan to End Parkinson’s Act. Her testimony reportedly was so moving that it brought representatives to tears.

Jim Young, founder of the Evanston Movers and Shakers, wants people to know that HR 2365 is critically important to bring attention, focus and resources to conquer this disease.

“Since Parkinson’s is a degenerative disease, we need to get this legislation passed as soon as possible. Appropriate funds for research can eliminate the disease, just like we did for polio,” he said.

The scheduled Parkinson’s activities that Morrison talks about can be opportunities for making special friendships. Relationships become close faster, something that happens when people share feelings and fears they might not show to others.

Also, reactions to experiences can be unexpected. For example, I like listening to my friend with Parkinson’s play the piano, not just because of how she plays, but because as she continues to play, I can hear her fingers loosening up. It is that sound that I enjoy.  Of course, this isn’t why other people enjoy listening to someone play the piano.

Another member said that one thing she likes about the support group is that “I can make Parkinson’s jokes and people laugh and don’t feel uncomfortable. If someone who didn’t have Parkinson’s made the same joke, I’d probably be offended.” And of course, humor is behind the name of the Evanston support group: Movers and Shakers.

One word that repeatedly comes up in our group meetings is a mantra: intention.

The dopamine in our neurological systems directs automatic responses in our speech and actions. When Parkinson’s symptoms begin to show, it’s because people have lost about 80% of their dopamine. But the intentional can replace the automatic. And the technique of intention can be taught.

When people with Parkinson’s talk too fast or too quietly, it can be because they are not being intentional in their speech.

If I fall into a bad speech pattern, it is OK to remind me, especially if you are someone who knows I work on intentional speech.

Keeping up with Parkinson’s research might feel more important to those of us with the disease, but knowing about significant discoveries is relevant for everyone.  Significant discoveries justify putting resources toward research.

Recently, researchers announced an enormous leap forward with the discovery of what’s known as the Parkinson’s protein, officially called abnormal alpha-synuclein. It’s possible, in the near future, that the 6 million people living with Parkinson’s worldwide will have improved treatment and those newly diagnosed will not show full-blown symptoms. 

Now, that’s something everybody should be aware of this month, and in the months ahead.

For more information about Evanston Movers & Shakers, contact Jim Young: jim.young.midwestinvest@gmail.com