Graphic by Sue Downey

Austin native aims to stay one step ahead of MS

Austin native Kirstin Czarnota was diagnosed with multiple sclerosis at 25. Now 37, Kirstin is trying to stay ahead of a disease that can cause debilitating side effects. -- Eric Johnson/photodesk@austindailyherald.com

A lot is riding on the Ride Across Minnesota. When TRAM comes through Austin July 26 and 27, native Kirstin Czarnota will be on the mind of at least two Austin residents — her parents.

Czarnota has multiple sclerosis, and she hopes the ride can bring it closer to the public’s conscious.

“That’s why the walks and the TRAM rides are so important,” said Czarnota. “It’s out there, and a lot of people don’t know much about it. I didn’t. I didn’t have a clue.”

Czarnota’s parents, Tom and Mary Graff, have been supporters of TRAM coming to Austin.

Czarnota, 37, was diagnosed with MS when she was 25, news that changed her life.

“It was frightening at first, finding out and learning that I have a disease that I’ll have for a lifetime and the disabilities it can cause,” she said.

At first, Czarnota thought she was going to be in a wheel chair.

“It’s not like that. It doesn’t have to be, but it can be,” she said.

Despite living with a disease that can be detrimental, she feels fortunate.

“After the initial shock, it’s been great, because I’ve been very lucky,” she said.

Czarnota learned she had MS after she went numb on the left side of her body.

“I couldn’t hold things, basically almost paralyzed on my left side,” she said describing the ordeal.

She was also having dizziness, and her father remembers being at her initial doctors appointments and seeing the concern in a technician’s face during a test.

“It was a shock, and she’s been dealing with it very well — better than we are,” he said. “We feel very lucky so far.”

Through steroids and medication, her feeling was restored. In a second attack, Czarnota went blind in her right eye.

In more extreme cases, MS can paralyze and cause blindness. Czarnota has been fortunate. She lives mostly free of extreme side effects from MS with her husband, Brian, and three children, Logan, Jacob and Olivia 2, in Cottage Grove.

MS is not believed to be genetic.

Czarnota’s parents are volunteering at TRAM to help prepare the camping area and transport the riders’ supplies.

Tom Graff said he’s thrilled to see the riders giving back, and his contribution pales in comparison.

“It’s very little for us to go out there and help out,” he said. “They’re giving a sacrifice, and our’s is pretty minute.”

Czarnota has not had any attacks commonly associated with MS, though she has less extreme side-effects, like getting tired easily.

“I’m very lucky,” she said.

Recently, she has shifted treatment methods. Her old doctor, who chose not to treat her MS if she’s not having the symptoms, moved away. The new doctor decided to implement preventative treatments. She receives injections three times a week.

While she said she prefers to not be on medications, she does like the idea of preventing further illness.

The medications do have side effects, but Czarnota hasn’t had any adverse reactions since. She has heard of more extreme cases where people struggled with symptoms for decades.

But, the road has been far from easy. In 2005, Czarnota was diagnosed with breast cancer. Doctors decided to stop the MS treatments and focus on the cancer.

“It’s uncommon to have someone so young go through two life-threatening diseases like this,” her husband said.

According to him, there’s a small sample size of people facing both breast cancer and MS, but his wife’s cancer is now in remission.

Despite the health concerns, the couple has lived a normal live. That’s not to say Czarnota has been un-effected by MS. She now has to live with limitations. In the past, she and her husband have participated in Warrior Dash, a fitness contest. But Czarnota has to limit herself because her balance has been affected by MS.

But when it comes to extracurriculars, fitness takes a back seat to the couple’s children.

“Our kids are our hobbies,” the husband said.

The couple is raising three children, but MS is said to not be genetic.

On a typical weekend, Brian and Kirstin are commonly found at home with their kids, possibly with another family over at the house.

“Thankfully the MS hasn’t impacted anything to date,” Brian Czarnota said.

Along with her parents’ involvement in TRAM, Kirstin and Brian’s extended family has participated in the MS work in the Twin Cities.

They’ve raised about a thousand dollars per year.

“There’s people not as lucky as me, and maybe we can find a cure,” she said of why it’s important to be involved.

Still, there is always the fear symptoms could worsen, which is why a cure would be so important for all living with MS.

“We always try to keep those possibilities out of our mind and hope for the best and just live our lives,” Brian Czarnota said.

Kirstin Czarnota isn’t the only reason her parents are involved in TRAM. Tom, who works as a park supervisor for Austin Parks, Recreation and Forestry, was inspired to help partially by the involvement of his co-worker, Valerie Pitzen, the recreation director.

“She works really hard at this,” Graff said.“She’s one of the reasons we’re doing this.”