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Point’s Jacqui Kapinowski overcoming obstacles

By Melissa Peace

Like most athletes preparing for a marathon, Point Pleasant Borough resident Jacqui Kapinowski will train hard, pounding the pavement every morning with one goal in mind — winning and doing the best she can do. The only difference between her and many other racers though, is that she will compete not with her legs, but by using her arms and the wheels her body has been forced to depend upon.

Equipped with a vibrant spirit and exuberant personality, Ms. Kapinowski, 45, has not let the disease that her body is battling put a stop to her pulsating drive for athletic excellence, which has her participating in scores of marathons and races as a disabled athlete.

“I’ve always been very athletic,” Ms. Kapinowski said. “In the past I have always jogged and participated in local races.”

In the late 90s, the avid runner’s love for just putting on her sneakers and heading out the door began to come to an end as she started to suffer from muscle spasms and seizures.

“Nineteen ninety-seven was the last year that I was completely able-bodied,” recalled Ms. Kapinowski, who has two sons, Lorin Michael, 22 and Billy, 21, with her husband of 18 years Harry, 55.

After years of visiting with specialists and being misdiagnosed with conditions such as multiple sclerosis or Lou Gehrig’s Disease, a neurologist in 2001 informed her that she was actually living with a rare neurological disease called Stiff-Person Syndrome.

Frequently misdiagnosed, the syndrome is still not completely understood by the medical profession, although scientists and doctors have linked the disorder to autoimmune diseases.

Most individuals with Stiff-Person Syndrome have frequent falls and lack normal defensive reflexes along with abnormal postures. Often times an individual with the disorder will seem hunched over and stiffened.

Although there is no cure for Stiff Person Syndrome, that does not stop Jacqui from her from achieving her goals.

Healthy for most of her life, Ms. Kapinowski believes that she developed the disorder after two different bouts of bacterial meningitis when she was in her 20s.

Although she can still take a few steps she needs to rely on her wheelchair due to dystonia & rigidity that has taken over her lower body.

This dependency was something that has progressed over the last few years due to the disorder.

Not long after she was diagnosed with the syndrome, Ms. Kapinowski used a cane to aid in her movement, followed then by a walker, and now a wheelchair.

Although her body was enduring a radical and progressive change due to the syndrome, there was always one constant in Ms. Kapinowski’s life — her love for racing.

“I am obsessed with racing,” said Ms. Kapinowski, adding that soon after she was diagnosed, she still attempted to complete marathons while using her walker or cane.

“It would be so difficult. I would be crying by the time I reached the finish line,” she said.

As time went on, her attentions were focused on racing in a wheelchair and setting her sights and goals high.

While some people diagnosed with a long-term, incurable disease may shut down and allow their drive for life to cripple, Ms. Kapinowski has done the complete opposite, making the best out of her situation and turning her obsession for competitive racing into a sort of career.

“If I wasn’t an athlete, I really don’t think my health would be doing as good as it is today,” she said.

Over the past decade, the impeccable athlete has been training daily to keep her physique in the best shape possible for all of her races.

With Harry, at her side, Ms. Kapinowski will use her arm muscles and fingers to push forward her wheelchair every morning, keeping in tact the rigorous training schedule that she loves.

“Jacqui is a tough competitor, but very fair. She would help anybody who was down,” said Mr. Kapinowski.

This love for racing has taken the athlete to almost 40 different races where she competes against other disabled athletes, and has seen her breaking the tape at the finish line numerous times.

In fact, Ms. Kapinowski and her push rim wheelchair touched down on German soil recently, when she competed in the world’s largest marathon in Berlin last month.

“It was amazing,” said Ms. Kapinowski. “I’ve never seen so many wheelchair athletes in one place before. It was so huge.”

While over 240 athletes competed in wheelchairs, Ms. Kapinowski took third place for females, a feat that should not be taken lightly, although you will never hear her brag about her wins.

“I compete to win, but it is also about doing what I love,” she said.

“I’m never surprised when Jacqui wins and she really strives for excellence. I’m so happy for her. She’s my honey,” said Mr. Kapinowski.

This competitive nature possessed by Ms. Kapinowski is not the only reason why she loves to keep busy racing. She also says that it allows her to remain positive.

“I keep so busy with racing that I am not constantly thinking about things that could bring me down,” she said.

Ms. Kapinowski has also spread her remarkable spirit to others in need, while participating in races alongside the Freedom Team, comprised of injured veterans from the Walter Reed Army Medical Center.

“They are truly heroes and it was such an honor to be in their presence,” said Ms. Kapinowski.

For all of those that have the privilege to be in the presence of Ms. Kapinowski, the honor is theirs.

Kevin Spina, an organizer and head of the division of disabled athletes for the Palm Beach marathon in Florida, has only positive words about his friend Jacqui.

“She is an amazing person and has a drive like I have never seen before,” he said.

Ms. Kapinowski and Mr. Spina were first introduced three years ago when she expressed interest in using her walker to complete the 26.2-mile marathon.

“I saw that she was struggling, so I walked the final six miles with her and we got to talking. I think we really bonded then and developed a friendship,” said Mr. Spina.

Since Ms. Kapinowski’s physical health was not getting any better and she did not have a push rim wheelchair at the time, Mr. Spina used his own money and donated funds to help pay for the pricey chair which can range in the thousands.

With her new chair in tow, Ms. Kapinowski competed again in Palm Beach the following year to great success.

“I told her she could do it, and she did. She is not the quitting type,” said Mr. Spina.

“There is a gleam radiating from Jacqui and she’s always got a smile on her face,” he said.

Whether she is participating in the marathons in Florida, New York City, Boston or Virginia, the winning racer sets her sights on enormous goals, including one of the highest in competitive sports.

“I am currently seeking a spot on the U.S. Paralympic Curling Team,” said Ms. Kapinowski.

As if she wasn’t busy enough with her racing, Ms. Kapinowski has found a new affection for the sport of wheel chair curling, a sport she took up only a few short months ago in August.

If she makes the U.S. team — which is made up of only four spots — after trying out this November, Ms. Kapinowski will head to the World Games in Switzerland to compete. After that, she will have the rare opportunity to be a competitor in the 2010 Paralympics in Vancouver Canada.

“I think she can do it,” said Mr. Kapinowski. “She’s only been curling for a short time and already she looks good.”

Although medical professionals cannot say how long Ms. Kapinowski’s health will allow her to remain so physically active in her chair, you will never find this woman feeling sorry for herself.

“I am truly blessed. I have a wonderful husband, wonderful sons and a wonderful life.”