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player ready...Raising money is one reason New Lenox resident Doreen Pomykala decided to renew a walk in the Chicago area for the Charcot-Marie-Tooth Association, but it’s not the most important one. Instead, her main goal is to provide connections for people with the rare disease.
“I meet people, and they’re excited to see someone who walks like me and looks like me. A lot of people have never met anybody else who has CMT. We get together and we talk about how life is so hard and tools and tricks that you use and doctors who know what they’re talking about,” she shared. “Connection is the biggest thing, but we (also) want to raise awareness and money because we want this taken care of.”
Pomykala, who runs the Chicago branch of the CMTA, said it’s hard to get a diagnosis for CMT, an inheritable, progressive neuromuscular disease that causes impaired balance, difficulty walking, nerve degeneration and muscle weakness. About 5,1000 people in Illinois have the disease, including about 2,900 in the Chicago area, according to a news release from the association.
She herself wasn’t officially diagnosed until her early teens, despite her mother having CMT and early signs, such as Pomykala not walking until she was 20 months old.
Those early years were tough.
“I tripped and fell all the time. I couldn’t, even as a young child, really run. My little body thought I was running but it was way slower than anyone. I couldn’t jump off the ground,” she said. “I could never roller skate. I learned how to ride a two-wheeler but I was 10 years old before I could do it.”
In her 20s, her hands started getting weaker and it got hard to walk. “It took so much energy. I would walk one step but it felt like I was taking two steps back.” Once she got braces for her legs in her late 20s, it got slightly easier. “I felt like when I walked I walked forward. It was beautiful,” she said.
Now, her hands and legs have gotten weaker. “My hands and toes are scrunched up. I can’t straighten my fingers anymore. But some of the daily living stuff, everything is just harder and slower.”
To compensate, Pomykala uses an electric toothbrush and a bigger pen. She also often needs help cutting food, especially meat, and she needs to have a stylus in each hand to type on a keyboard. She uses a cane to walk but admits that she should probably be using a walker, although pride keeps her from doing so. “A wheelchair will probably be in my future a lot sooner than I’d like it to be.”
Even her long career as a teacher required adjustments. “I taught for 34 years, my last 20 as a New Lenox kindergarten teacher,” she said. “Everything took longer. I came in early because I knew it would take an extra hour to set everything up.”
Luckily, she’s got a lot of gadgets that help. “My husband, Bill, has always been very creative to help make things to help me over the years,” she shared.
Although CMT is an inherited disease, not all symptoms are the same. “Interestingly, the same CMT in the same family can look very different in each person. One of my daughters has it, and two of my five grandchildren have it. It’s a 50-50 chance in my particular form of CMT,” Pomykala shared.
Her daughter Ashley Pomykala, of Merrillville, experiences nerve tingling and pain and has had hip and back problems related to the disease. She’s recently started a CMT branch in Northwest Indiana that will participate in the walk. And grandson Gideon Moffit, 5, has had swallowing problems since he was born and uses a tube to eat. Both he and her granddaughter Erika Reames, 17, have had multiple surgeries on their feet.
This year’s walk, set for Aug. 23 at Hickory Creek Preserve in Mokena, where Doreen Pomykala grew up, is the third one she’s led. Walks took place for 15 years in Oak Lawn, but that organizer stepped back several years ago. Check-in for the event is at 10 a.m. at the Hickory Creek Hollow Shelter. Participants are urged to raise money in advance, although same-day donations are welcome. Register at cmtausa.org/chicagowalk.
Pomykala emphasized that walking isn’t a requirement to participate. “Not everybody who comes to my walks actually walks,” she said. “We’ve always made that clear.”
Those who choose to make the quarter-mile loop will be doing so along a lovely trail. “You could walk for miles. It’s hilly. It’s beautiful,” she said. “Or if they want to bring their bike, they can do that.”
Attendees will find a display of helpful tools and gadgets, and a free picnic will take place after the walk featuring hot dogs and brats, treats from Fleckenstein Bakery in Frankfort, and a dish to pass provided by people in her chapter. “I’ll have bean bag games, kid toys and games like bubbles, large Jenga,” she said.
Another way she raises money that day is raffles. “One of the most popular raffles are Bill’s famous apple pies that he bakes that are as thick as can be and delicious.”
In addition, Elena Sorci, manager of Hanger Clinic in Frankfort and a certified prosthetist/orthotist who has helped Pomykala with her braces, will set up a table at the walk. Sorci, who also has CMT, will have sample braces that people can look at and try on.
Pomykala is an inspiration for those who know her. “She blows my mind every time I talk to her. As a patient and community member, it means the world to me,” said Mary Louie, national events manager for the Charcot-Marie-Tooth Association.
“We love when our leaders really bring in the community, clinicians, people that they see for their shoes, people they see for their bracing, as well as our Centers for Excellence across the country that attend walks,” said Louie, who has 2A CMT.
“I grew up in a family of CMT. I grew up knowing I had a 50-50 chance and then I was diagnosed in my early 20s due to symptoms. I’m one of the new mutations, so I was officially diagnosed in 2018. It was a long time coming; it was 18 years of work getting that diagnosis.”
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Louis agrees that the walks are important, both for raising money but also for community. “These events are sometimes the first touchpoint into the community for a lot of people. I always tell, especially walk leaders who are new, that people are going to hug you. They’re going to get excited and emotional because it might be the first time they’ve met someone with this disease,” she said.
“It’s a chance if they’re in the area to get some information, have a conversation with someone and keep on moving or go to the website (cmtausa.org) and get more information there.”
She urged people to join this walk or any of the 30 others that happen across the country as part of the association’s effort to raise $500,000 each year.
“A lot of us on staff either are deeply connected to the disease or are patients and community members ourselves. We want you to feel like you’ve found a place that you can fit because you have a disease where you don’t necessarily fit and that people haven’t necessarily heard of,” Louie shared. “If you can spend an afternoon or morning at an event and make some connections that can change your life, it’s hugely beneficial to all involved.”
Melinda Moore is a freelance reporter for the Daily Southtown.