Living With Multiple Sclerosis

Featured Article,Healthy Living,Multiple Sclerosis
March 11, 2011

A courageous mom shows that the good life is still possible with MS.

A courageous mom shows that the good life is still possible with MS.
A courageous mom shows that the good life is still possible with MS.
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Nicole Tassone prided herself on being an active, involved, “cool” mom to two young sons. But inside, she knew something was wrong with her body.

It started eight years ago when she collapsed while playing tennis on an annual girlfriends’ getaway to Haig Point, a vacation destination near her home in Hilton Head Island, S.C. “It went from that one accident — my legs just giving out — to a little limp, and then it progressed from there,” she says.

Nicole began to suspect multiple sclerosis (MS), and even consulted two cousins who have the condition. But it took three years and multiple doctors to confirm the diagnosis of MS, which can manifest in a multitude of ways. Finally, a friend’s husband helped her get an appointment at the Johns Hopkins Multiple Sclerosis Center, where the director, neurologist Dr. Peter Calabresi, recognized her symptoms immediately.

Though she’d fought long and hard for the right diagnosis, when it finally came, Nicole felt like it was a mixed blessing.

“Initially, I was relieved, but I didn’t realize that MS has no cure,” she says. “Then I did some research and learned that one day I might be in a wheelchair. That’s when I got scared.”

As her symptoms progressed, one concern weighed heavily on Nicole’s mind: How will this affect how I raise my children? Nicole’s sons, CJ and Michael, were only 7 and 5 at the time of her diagnosis. “At that age, they’re so active,” she says. “I didn’t know how to explain to them, ‘Mommy’s not going to be able to kick the soccer ball.’”

While her doctor adjusted her medication, Nicole pored over information about managing MS on a day-to-day basis and improving her quality of life. In the doctor’s office waiting room one day, she spotted a pamphlet for a wireless system called the Bioness L300, which helps “foot drop,” a common symptom of MS in which the ankle has difficulty moving upward, which can impede gait and mobility. Using the device enables her to periodically walk without a cane, making daily errands easier.

“Walking two city blocks might as well be walking 10 miles, so going to the grocery store can be exhausting,” she says. “That device helps keep me going.”

Nicole also quickly learned that while her physical capabilities were changing, staying active is now more crucial to her health than ever.

“Strength training is very important with MS—if you don’t use it, you lose it,” she says. “So I do that and yoga to make sure that I’m using my muscles. If nothing else, I’m very flexible. I like to say, ‘I may fall, but I can catch myself!’”

As part of her workout regimen, she hits the gym five to six days a week, in addition to frequent work with a physical therapist to strengthen her hips.

But one of the most important changes the young mom has made has been mental. No longer can she run herself ragged without consequences, so time management is key. She never goes to the store without a list, and she frequently takes catnaps to recharge during the day.

While Nicole prides herself on her hard work to remain active, she also knows when to give her body a break—like on an upcoming family trip to Universal Studios, Florida.

“I’ll use a scooter, just to make my life easier and have a little more fun,” she says. “MS has given me a different perspective. I’ve always been an extremely energetic, busy person—that’s the way I love to live my life. But now I know that it’s OK to slow down now and then too!”

 

Read about Dr. Mary Hughes’s search for an MS cure.

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