People navigating an obstacle course, children jumping rope, and a dozen patrons pumping their legs in a pack of more than 50 stationary bikes inside USF’s Sun Dome set the stage for Saturday’s Multiple Sclerosis Fitness Challenge and Health Fair.Volunteers and vendors seemed to make up most of the crowd for the USF MS Research Fund’s first organized benefit, but that did not deter its planners.
“Overall it went well. It’s the first event, so you can’t expect too much,” Stanley Krolczyk said. “About 150 volunteers showed up in the morning. (That) was a pleasant surprise.”
Krolczyk said the purpose of the event was not only to educate the public about MS, but also to encourage those with the chronic, degenerative muscular disease to maintain control of their health with continued exercise, even though it might bring short-term discomfort.
“It changes the body’s temperature, and changes the conduction, which may make you fatigued and slow you down,” he said. “But you still have to keep your muscles and everything in tone and shape, or else you’re going to fatigue, and you’ll fall and have more problems.”
MS is a chronic disease that attacks the central nervous system, affecting vision, interrupting speech and physical coordination, and taking a toll on muscular abilities.
There is no known cure and its cause is unknown.
Symptoms often manifest when victims are young, starting to surface as early as 15. Most of the 400,000 Americans currently estimated to have MS experience recurring indicators like numbness, tingling sensations and fatigue between the ages of 18 to 40, and one of the performers for Sunday’s fundraiser was no different.
Singing Through the Pain
Thirty-three year-old singer Kristie Salerno Kent has danced since she was seven. As a young women she studied musical theater in New York with her eye on Broadway.
“But then I was diagnosed with MS, and that changed my dreams,” she said.
In 1995, she had just graduated from Syracuse University when she started feeling depressed and began having difficulties with coordination and balance in her dance classes.
“Ballet was one of the ones that used to come easy to me,” she said. “But it was causing me a lot of trouble because my left leg would go numb (while) I was dancing. Those were early symptoms of MS I didn’t recognize.”
She consulted an orthopedic surgeon and tried physical therapy, but was never diagnosed.
It was not until three years later, after she had just finished up a 10-month theater tour and was planning a wedding to her high school sweetheart, that the symptoms returned. Within days, the numbness and tingling in her hands and feet spread to her midsection.
“I woke up one morning, unable to move from the waist down,” she said.
When trips to the hospital and an MRI confirmed she had MS, she thought her career was over.
“For me, the toughest part about having this disease is the uncertainty,” she said. “One day is so different from the next day.”
“That stage I performed on today is not a Broadway stage obviously. I have restrictions,” she said.
“(I) have an appreciation for singing and what it takes to sing, where I took it for granted before.”
She said the disease has changed her performance in two ways. Weak posture, fatigue or suddenly going numb have made her fear that she may drop the microphone or trip on stage. Also, vocal techniques as simple as breathing from the diaphragm are more complicated because of her MS-related bladder conditions.
“I’m afraid sometimes if I really relax and let go here, I might let go with my bladder,” she said.
“(But) my performances are so much more rewarding than they ever were. (I) feel like that’s the reason that I have this disease – to share my music, and hopefully use music to inspire and motivate other people (to) live their dreams and not live their MS.”
Rows of Tables
USF medical students Jason Diamond and Brian Derby sat on the sidelines of the crowds that slowly filtered through the Sun Dome, handing out pamphlets of information about MS and questionnaires about conditions like chronic pain, depression and other neurological conditions associated with the disease.
There is no sure test for the disease, but since MS symptoms frequently arise among the college years, Derby advised students to follow “very basic health principles” and to familiarize themselves with how their bodies feel, move and work on a daily basis so that they know if something feels “out of whack.”
“Give yourself a once over,” Derby said. “Know your body well, and if you feel like there’s a combination of things that just don’t seem right (or) ‘This is not me.’ then that’s the time to get it checked out with the doctor.”
Making it Personal
Near the end of the daytime fundraiser, Krolczyk evaluated the success of the event. He said that although organizers may not have reached their financial goal of $200,000 for USF’s MS Research Fund, he wasn’t worried. A money-making fashion show and nighttime party were to follow at the Hard Rock Casino.
He recalled rushing through the halls with a peer to respond to a cardiac arrest during his first year of medical residency.
“We’re running in the middle of the night. We’ve already been up 30 hours. All of a sudden, she falls,” he said.
Krolczyk said when he told her to get up, she couldn’t.
A few days later, after an MRI and a spinal tap, his friend Amy found out she had MS.
“(One) of the things I’m going to try to do, is start a fitness center just for MS patients, because certain exercises can (affect) them more than others,” Krolczyk said. “They can see that they still need to have the quality of life, do things, get out there, and not just feel that those opportunities are taken away from them.”