Climbing through the wet mud of a five-mile obstacle course with a smile on her face is a metaphor for how 18-year-old Jenna Chwascinski has chosen to live her life — despite challenges she might face because she was diagnosed with multiple sclerosis (MS) a few years ago, she’s prefers to stay positive.
Talk to Chwascinski about her MS and she is quick to tell you that she doesn’t want anyone feeling sorry for her. She’s a woman of action, and she’s living her life that way.
“Until it gives me a reason to, I’m not going to slow down,” the 18-year-old remarked.
When she was a student at Washington High School, Chwascinski didn’t let her MS diagnosis stop her from participating in the school band and its many activities.
These days, she works two jobs (as a waitress both at Bob Evans and Cecil Whittaker’s Pizzeria), is a student at East Central College with plans to transfer to Central Missouri State in Warrensburg and eventually have a career in public relations.
Chwascinski also believes in being an active part of finding answers for the questions of MS, which is why earlier this month she and her family took part in that mud and obstacle fun run known as MuckFest MS to raise money for the National Multiple Sclerosis Society.
Held July 6 at the Federated Auto Parts Raceway in Pevely, the event drew over 2,500 participants and raised over $120,000.
“We ran through five miles of mud and water,” said Chwascinski, with a smile.
Next, she’ll step up to the plate for a Screwball Tournament set for Sept. 6-7 in Marthasville to benefit the MS Society, and then she’ll take part in the local Walk MS to be held Saturday, Sept. 21, at Lions Lake.
Registration begins at 9 a.m., followed by the walk at 10 a.m. This is an earlier time for the walk than in the past.
The event also will feature different refreshments and have a fund-raising booth with items like T-shirts and bracelets for sale.
There will be music, raffles and prizes, maybe even an opportunity for for a photo booth where teams or individuals can purchase silly photos of themselves with proceeds going toward Walk MS.
Diagnosed with Relapsing-Remitting MS (a type where symptoms come and go) three years ago, Chwascinski said she’s never wanted to make a big deal out of her condition. From the beginning, she took the news from her doctor in stride.
“I went back to school and took two finals,” Chwascinski said, matter-of-factly.
Soon after her diagnosis, as she told others about her condition, people would often respond with shock and sympathy, asking what she was going to do.
“ ‘Live,’ I told them. Don’t count us out.”
At the same time, Chwascinski said she isn’t kidding herself or pretending that she doesn’t have a hard road ahead of her. But she pays attention to her symptoms and is vigilant about taking her medication. She’s eager to do all she can to slow down the progression of her MS.
Lucky to Be Diagnosed Early
For Chwascinski, the first symptom that she had MS was numbness and tingling in her feet when she woke up one morning for school. Later she also felt it in her hands, across her back, on her side and belly.
She was 15 at the time, and so she told her parents, Duane and Rhonda Chwascinski and Karen Kubiak. Naturally, they were concerned and began taking her to doctors, including Dr. Jamie Haas, a neurologist with then-Patients First, looking for an answer.
A pediatric rhumatologist at SLU thought she could have lupus, Duane Chwascinski recalled. She has vitiligo, a condition where pigment is lost from areas of the skin leaving whitish patches, he said, and that “kind of fit with (lupus).”
Fourteen vials of blood were drawn for testing, but the results came back negative for lupus. That was a relief, of sorts.
When the doctors first brought up the possibility of MS, Chwascinski and her family were not that familiar with it. A spinal tap confirmed the diagnosis. It had only been a few weeks since Chwascinski’s first symptoms.
That’s extremely fast for people with MS, many of whom go years, maybe even a decade or more, before they get a diagnosis, said Duane Chwascinski. The symptoms can be that elusive and fleeting, coming and going to the point where it’s hard to pinpoint just what you were feeling.
“Even her doctor, Dr. Barry Singer with Missouri Baptist Medical Center in St. Louis, was surprised at how fast she was diagnosed,” he commented. “Most people have their first MS symptoms when they are younger, but they aren’t diagnosed until their 40s. They either just work through it or it goes away and they think it must have been no big deal.”
That’s the way MS works, he explained — symptoms can be present for a short time and then go away and not appear again for years.
“Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body,” Meghan Freeman of the MS Society’s Gateway Chapter in St. Louis notes on their website, www.gatewaymssociety.org.
Symptoms of MS can range from mild to severe and can include things like blurred vision, loss of balance, numbness, poor coordination, slurred speech, tremors, extreme fatigue, problems with memory and concentration, paralysis, loss of vision . . .
“The progress, severity and specific symptoms of MS in any one person cannot yet be predicted,” notes Freeman, “but advances in research and treatment are moving us closer to a world free of MS.”
Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 6,900 individuals in the Gateway Area Chapter and more than 2.1 million people worldwide.
Jenna was lucky to be diagnosed early, because she was able to start taking medication that can reduce or maybe even prevent her from having “flare-ups,” or periods where her symptoms return, her dad said.
People who go undiagnosed or who choose not to take their medication for whatever reason leave themselves vulnerable to increased flare-ups and, thus, worsening symptoms in a faster time frame.
About a year after Jenna’s diagnosis, Duane Chwascinski took her to an MS event to meet other people who are living with the disease. He wanted her to hear about their experiences — including how failing to take their medication led to increased symptoms.
That made an impression, said Jenna, recalling how she met people at that event who said they didn’t take their medication when they were younger and today they are in wheelchairs, while she met others who said they always took their medication and they were not in wheelchairs.
Today, Jenna is vigilant about taking her medication — shots that she gives herself three times a week — and every six months, she visits her doctor at Missouri Baptist.
Goal Is to Create A Support Network
In terms of numbers, the goal for the 2013 Walk MS is $21,050 (up from last year’s $17,000) with at least 155 walkers from a broader area — not just Washington, but all of Franklin County, plus Warren and Gasconade counties, even Rolla.
But Chairman Monica Chwascinski is hopeful the walk will do more than just raise funds.
“It’s all about getting people out, raising awareness,” she said, noting her real goal is making it easier for people with MS to access help and support.
“There are only three people in Franklin County who are receiving services through the National MS Society . . . and it has so many resources to offer — treatment options, therapeutic options, physical therapy centers, equipment and devices. They can sometimes help with these things for people who can’t afford them.
“They can provide cooling vests in the summer, because when people with MS get overheated, it’s hard on their nerves,” she added. “They can provide scholarship programs for college. They have a camp, Camp Hope, for kids with MS.”
These are the kinds of things Monica Chwascinski wants to make sure people with MS are aware of, and she wants to bring as many people with the disease together to make connections and establish a network.
“There already is a local support group for people with MS, but Jenna and I have also talked about starting a Facebook page for people with MS,” she said.
The page, Mid-Mo Connections for MS, should be live in early August.
“It will be more informational and social, with dates of upcoming events like MuckFest, the screwball tourney or other fundraisers.”
In addition to Walk MS, a “footprint” fund-raising campaign will be held July 24-Aug. 11. Businesses around Franklin, Gasconade and Warren counties will ask customers if they would like to purchase an orange paper footprint for a $1 donation to Walk MS. The footprints will feature the donors’ names and be posted around the store, much like campaigns for causes like Children’s Miracle Network.
Businesses that sell $500 or more of footprints will then be considered a sponsor for the MS Walk, said Monica Chwascinski.
Participating in the Walk MS is free. There is no registration fee. Walkers are asked to bring donations.
Chwascinski said people shouldn’t feel like they only have to ask for large sum donations. Any amount helps.
“Just ask five friends for $5 each, and it adds up,” she remarked.
All of the funds raised through the Walk MS event here stay in the Gateway area to drive research, provide equipment to patients, support Camp Hope, adapt vehicles for people with MS and finance other programs.
People can register for Walk MS online through the Gateway chapter (www.gatewaymssociety.org) or at the event. They can form a team or join another.
Everyone who raises $125 receives an orange MS T-shirt.
For more information, people can contact Monica Chwascinski at 314-808-1495 or firstname.lastname@example.org.