By Erik Hanley (email@example.com)
A recent rare genetic neurological disease diagnosis isn’t stopping Oak Creek Ald. Chris Guzikowski from continuing to serve the city, which he called "a privilege and pleasure."
Guzikowski was diagnosed with Huntington’s disease. His wife, Colleen, said he was having some balance issues, was repeating a few things, forgetting things and had some issues with decision-making tasks.
“(Colleen) was noticing things were off a bit, and organizing stuff had become a challenge,” he said. “Normally I have the neatest garage in the neighborhood.”
Guzikowski said he was feeling a lack of motivation, which he and the family thought could have been the result of eight back surgeries — possibly something with the medication.
“We wanted to get testing out of the way to cross (Huntington’s) off,” Guzikowski said.
Colleen Guzikowski said there is a family history of Huntington’s disease; her husband’s oldest sister died from the disease about a decade ago. She said they knew it was a possibility Chris could have it, but at the time there were no symptoms.
One Friday evening in late October the couple was shopping at Walmart when the doctor called telling them Chris’ test was positive. Since then, the Guzikowskis have met with a genetic counselor to discuss the next treatment steps.
There is no cure.
Starting in early 2021, Guzikowski will begin speech therapy, which he said is a broad term.
“I won’t be able to swallow going forward,” he said, adding the therapy will also help with choking fits.
Guzikowski has worked at Western States Envelope and Label in Butler for about 30 years; he currently works in the sales department. While he said he's still able to drive, work his day job and serve on the council, there will come a time where he can’t anymore.
“I have to know when to say when,” Guzikowski said.
A bowhunter, Guzikowski said it was important to him to get out in the woods and in and out of his tree stand safely this fall.
Colleen Guzikowski said there is no set timeline for the progression of Huntington’s disease.
“We just don’t know with this disease how this could go,” she said. “He could stay at this level for five or 10 years or could deteriorate in next few months. We’re doing what we can each day.”
Chris Guzikowski said because the disease is genetic it could affect his three daughters.
“It directly impacts each one of them; this doesn’t skip a generation,” he said.
Guzikowski said he is working to organize a 5K walk/run in May to help increase awareness for Huntington’s disease. While his family knows about the disease, he said that when he tells those outside his family about the diagnosis, most are unfamiliar with it.
“It was just discovered in 1993; it’s a relatively new thing with no cure,” he said. “This walk/run will bring awareness to the Oak Creek community and surrounding communities.”
Two locations are under consideration for the event: Lake Vista Park and the Dale Richards Trail at Drexel Town Square. Guzikowski said he’s leaning more toward Drexel Town Square because it would be more of a memorial to Richards and his sister; he said the butterflies on the signs for the trail are because of her love of them.
Guzikowski also reached out to the Wisconsin chapter of the Huntington’s Disease Society of America to help out with the 5K event.
T-shirts will be sold, likely with the name “Guzi’s Gang” on them, he said.
Guzikowski announced his diagnosis to the Oak Creek Common Council on Dec. 16 and asked for prayers and support. He said he decided to tell the council about his diagnosis now because he is planning the fundraiser and it would come up on agendas in the new year.
“The diagnosis has been life-changing for me and my family,” he told the council. “I want you to know that I am committed, absolutely 100% committed to partnering with all of you, and I intend to serve my constituents in the Sixth District through my term. I also intend on running for re-election, health permitting.”
Chris Guzikowski’s current term as District 6 alderman will last until April 2022. He promised to be transparent if his ability to serve is affected.
“In the meantime, we have a lot to accomplish ... let’s continue with the work at hand,” he said. “Remember every day is a gift.”
Oak Creek Mayor Dan Bukiewicz appeared shocked and said that while 2020 has been full of bad news, this was terrible news.
“Wow, that’s a lot to comprehend,” he said. “Believe me, my prayers, my thoughts are with you. You’re a very brave man to state that publicly.”
Ald. Steve Kurkowski also expressed support to his common council colleague.
“We are a family, so you’ve got a bunch of people you can count on to help you,” he said.
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