SOUTHINGTON, Conn. – Still reeling from the news, she called her younger brother at the station where he worked. Her voice cracking and with tears in her eyes, she asked him to play her favorite Bon Jovi hit, “Livin’ on a Prayer.” While they talked, he tried his best to encourage her. After the call, he thought about just how close they’d been growing up. Only 15 months apart and both sporting maple brown eyes and jet black hair, everyone mistook them for twins. It would be the only time he would ever defy his sister. He, instead, played Bon Jovi’s, “I’ll Be There For You.”
“It was 1999, and after months of baffling symptoms affecting my balance and sight, I was finally diagnosed with multiple sclerosis,” said Carrie Aguiar Kuhn, whose brother, Joe Aguiar, is host to The River 105.9 FM weekday mornings from 5 to 10 a.m. “The diagnosis turned my life upside down. When I heard the song my brother dedicated to me, I just sobbed.”
Kuhn, who lives in Southington, had been working in a rehab center as a certified nursing assistant when she was diagnosed with multiple sclerosis, a potentially debilitating disease. At first, when she had felt numbness and tingling around her waist, she shrugged it off thinking she was wearing her belt too tight.
But before long, her balance seemed off, too. It wasn’t until one evening, while working a nightshift, that her entire left side went numb. She knew something was terribly wrong.
More than 6,000 Connecticut residents, like Kuhn, battle multiple sclerosis, a chronic, often disabling disease. Symptoms can range from numbness in the extremities, to loss of vision and, in severe cases, complete paralysis. The progression, severity and specific symptoms related to MS in any one person cannot be predicted, but advances in research and treatments are providing hope to those affected by the disease.
Sitting across the desk from Kuhn’s neurologist, Kuhn and her mother listened as he shared with them the news. He went on to explain the effects of the illness and what could be expected – or not expected.
“I could see him talking but I only heard, ‘multiple sclerosis,’” remembered Kuhn. “I was in shock. There was no way I could possibly share this with anyone beyond my family. I didn’t want people to think I wasn’t capable. I didn’t want to be labeled; I didn’t want to be restricted.”
Fearful she might be ill and have to cancel plans, Kuhn stopped making arrangements with anyone – at times, even her family. Her friends couldn’t understand why this once gregarious woman was now difficult to pin down. And after a while, Kuhn had fewer and fewer invites.
“I was really worried about her,” said Aguiar, 38, who lives in Wethersfield with his wife and three children. “She seemed to stop living. She even left my wedding early. At the time, I didn’t know her symptoms had flared up; she just didn’t tell anyone anything. Multiple sclerosis seemed to be robbing her of everything – movement, but also friendship and joy.”
Try as she may, hiding her illness at work proved difficult. In fact, after one too many stumbles and a couple prolonged absences, her supervisor called Kuhn into her office and asked if she had a drinking problem.
“It was all too much,” remember Kuhn. “I was so discouraged. I was forced to share with my supervisor that I had been diagnosed with multiple sclerosis. And just as I suspected, there wasn’t much support.”
Kuhn’s health continued to slip. There were times when she was essentially paralyzed on the left side of her body. It was during those times that family seemed to be all she had.
“I remember feeding Carrie when she couldn’t lift a fork,” said Aguiar, who has been with Clear Channel Radio for more than 10 years. “When she seemed downer than down, I’d refer to my arsenal of funnies to try and lift her spirits.”
Eventually, Kuhn began to take back the reins of her own life. She began to understand that the more she insulated herself against the world, the more MS was getting the upper hand. Kuhn found very little support in her current job. So, she changed jobs, signing on with Cloverleaf Family Medicine where she serves as a medical receptionist. In 2001 Kuhn married the love of her life, Bill Kuhn, who, knowing she lives with an incurable illness, meant what he said when at the alter he vowed, “for better or worse and in sickness and in health.” Next Kuhn changed neurologists; according to her, something long overdue.
“My first neurologist only treated me only when my symptoms flared up,” said Kuhn. “I needed a neurologist who could offer lifestyle suggestions and prescribe medication that, together, would work to reduce the number of exacerbations. I’ve made some healthy lifestyle changes. I’m also now on a disease-modifying drug to help slow the progression of my MS.”
Kuhn also began to open up about her MS, sharing first with friends and then with those with whom she worked.
“My co-workers see how hard I work,” said Kuhn, who is now called upon to share with patients newly diagnosed with MS. “Everyone at the office is so supportive and helpful. I couldn’t work for a better employer.”
For the past several years, Connecticut’s Clear Channel Radio stations, including The River 105.9, have been partnering with the National MS Society, Connecticut Chapter, supporting fundraising events, such as Walk MS. In fact, Renee DiNino, also a host on The River 105.9 and director of community affairs and programming, serves, along with Darren Kramer, WTNH News 8, as grand marshal for the annual Walk MS.
This year in support of the walk, Kuhn’s brother, Joe Aguiar, has gone the extra mile. He has organized a fundraising team, The River 105.9, in honor of his sister and her fight against MS. He and Kuhn also are serving as this year’s official Walk MS spokespersons and talent for a Clear Channel Radio PSA, which is airing on all seven stations, including The River 105.9.
“I’m inviting friends, family and even my River fans to sign on to join my team and step out with us at the Cheshire walk site,” said Aguiar, who, to raise additional awareness, guested with Kuhn in February on WTNH News 8’s Good Morning Connecticut. “Carrie inspires me. Everyone can help make a difference in the lives of people living with MS. It doesn’t take a lot. It’s putting one foot in front of the other for those who can’t.”
The 2014 Walk MS, presented by Travelers, will be held at 10 sites statewide on Sunday, April 6. The walk will be held at Westport and Madison sites on Saturday, April 5. Lunch is provided compliments of Subway and Coca-Cola. Route options include 2.5- and 5-mile walks. Those disabled by MS are invited to attend as participants in a newly organized virtual walk. There is no fee to register for Walk MS, but participants are encouraged to form teams and fundraise. Funds raised at chapter events, such as Walk MS, ensure ongoing scientific research to find a cure and provide for the continuation of vital programs and services offered by the chapter to Connecticut residents affected by MS.
“Looking back, I’ve learned it’s important to let others into our lives, especially when the going gets tough,” said Kuhn, who has picked back up some of her favorite hobbies, such as hiking, biking and photography. “People want to help. The more I shut people out the worse it got. With the help of those there by me, including Joe, my awesome husband, Bill, my family and my friends, I have become all the more empowered, mentally and physically, over my illness.”
Walk MS community partners include WTNH News 8, WUVN/WHTX Univision and WUTH Telefutura and Clear Channel Radio Connecticut, which includes The River 105.9, Country 92.5, KISS 95.7, ESPN 1410 AM, KC 101.3, 960 WELI, and ESPN 1300 AM, 95.9 The FOX, WCTY 97.7, La Puertorriqueñisima 1120 AM and Associated Neurology of Southern Connecticut.
Fundraising for Walk MS will continue through May 2014. To learn more about the 2014 Walk MS, presented by Travelers, or to pre-register, please visit ctfightsMS.org.