Jan 29, 2015

Comeback Athlete: Kristin Duquette

East Catholic High School, Manchester, Conn.

By Kyle Garratt

Kyle Garratt is an Assistant Editor at Training & Conditioning. He can be reached at: [email protected].

Kristin Duquette is big on goals. She sets them weekly, monthly, and yearly. Some of the teenager’s current goals include getting a manicure, having a sleepover with her friends, surfing in California again, improving at the violin, and trying her hand at triathlons. But one goal has reigned above the others since she was a child: to swim in the Olympics. And even though life has dealt Duquette some unexpected challenges, she’s not letting her Olympic dream die.

Now a senior at East Catholic High School in Manchester, Conn., Duquette started swimming when she was three years old, and was a very athletic child until the age of seven or eight. That was when she began to trip over her feet, developed difficulty running, and found herself chronically fatigued. In 2000, when Duquette was nine years old, her parents took her to a neuromuscular specialist, who diagnosed her with facioscapulohumeral muscular dystrophy (FSHD), a form of muscular dystrophy (MD) that causes muscle weakness and deterioration in the eyes, mouth, shoulders, and upper arms. She was also diagnosed with scoliosis, a lateral curvature of the spine.

“I didn’t know exactly what was going on, but I knew something was wrong when the doctor started doing all these tests,” recalls Duquette. “I was a kid, so the only things I really cared about were being like my friends and playing the sports I wanted to. But before long, I couldn’t run like my friends, and then I quit playing sports when I was 10 because my body was getting progressively more tired. It got to the point where I was sleeping for two hours every day after school.”

Duquette started traditional physical therapy, including stretching and strengthening exercises for her calves, legs, and upper body. She threw a medicine ball and tried yoga, but continued to lose control over her body. As a middle schooler, her doctors told her she would likely be in a wheelchair by the time she started ninth grade. FSHD makes swimming difficult, as it causes scapular winging and decreases flexion and abduction in the shoulder. As her symptoms worsened, giving up swimming was especially hard.

“I was getting slower and I remember feeling almost insulted when I’d finish in last place with no one else in the pool and people would still clap for me,” she says. “I had dreamt of becoming an Olympic swimmer, but I started to think it wasn’t meant to be.”

Duquette readjusted her sights and goals when she discovered two things that would change her life: the Paralympic Games and Integrative Manual Therapy (IMT). The Paralympics are an elite athletic competition held in the same year and city as the Olympics for athletes in six disability groups: amputee, cerebral palsy, visual impairment, spinal cord injuries, intellectual disability, and a group for those who don’t fit into the other five.

The games gave new life to Duquette’s dream of swimming against the world’s best athletes–which she hopes to do in London in 2012. And IMT helped give her a realistic shot of getting there.

IMT is a hands-on therapeutic technique that incorporates varying levels of pressure to reduce muscle spasms and pain while increasing soft tissue flexibility, joint mobility, range of motion, and strength, and improving balance and coordination. Developed over the past 30 years by Sharon Weiselfish-Giammatteo, PhD, PT, President of the Center for IMT (CenterIMT) in Bloomfield, Conn., and a physical therapy practitioner and instructor, IMT is unique because it targets specific systems within the body, utilizing different manual techniques for each.

“Muscles require certain intervention techniques for healing, and those interventions are different from the requirements for bones or blood vessels,” says Weiselfish-Giammatteo, who started treating Duquette four years ago. “IMT is based on an integrative systems approach with multiple types of intervention, and over the years we’ve learned which techniques improve muscle, and which improve bones, joints, circulation, connective tissue, or organs.”

Weiselfish-Giammatteo’s craft differs from other physical therapy methods for MD not only in practice, but in intent. “Traditionally, physical therapy for someone with Kristin’s diagnosis attempts to improve the body’s function, with the understanding that structural impairments will probably limit the degree to which function can be attained,” she says. “A physical therapist might try to maintain range of motion and strength. With IMT, we attempt to improve the structural integrity of the body in order to increase the potential for function.”

Duquette first met Weiselfish-Giammatteo and the staff at CenterIMT when she was 14, and was immediately impressed. “My mom brought in my x-rays to show Dr. Giammatteo that I had scoliosis, and she said, ‘I don’t need to see the x-rays. I know by the way she’s sitting and by feeling her spine,'” says Duquette. “When they performed therapy on me, at first I thought it was some kind of voodoo. But as soon as I got up from the table and started walking, I felt the difference.

“I was amazed because after so many years, something was finally going right for me physically and giving me hope,” she continues. “Walking out of there I said to my mom, ‘This is the best day of my life.’ I felt like I was finally getting my health back.”

Weiselfish-Giammatteo says every person with FSHD suffers from weakness in the facial muscles, shoulder muscles, and girdle, and postural deformities to the joints where the humerus and scapula meet. However, not everyone faces Duquette’s postural deformities and weakness of the lower back, spine, and legs. And fighting a disease is different from working through a disability.

“With a disability, you typically have the symptoms and the diagnosis, and that’s it,” says Weiselfish-Giammatteo. “It’s not supposed to get worse over time. A disease is constantly changing and potentially causing more and more deterioration.”

Duquette’s treatment is an ever-evolving team effort including Weiselfish-Giammatteo, fitness trainer Michelle Compton, CSCS, and her private swimming coach Rich Lucan. She has been performing strengthening exercises with Compton for just over a year, and coordinating with Weiselfish-Giammatteo has been integral to the process.

“I watch Dr. Giammatteo work with Kristin and I bring her my concerns about where I want to build Kristin’s strength,” says Compton. “Her condition gives her a lot of imbalances, so the better her therapy does at placing her in an anatomically correct alignment and range of motion, the more I can strengthen her muscles to help keep her there.”

Some of the upper-body strength work involves resistance training with stretch cords and light weightlifting. For the lower body, Duquette performs stretching exercises with her calves to increase dorsiflexion, along with core-strengthening exercises using foam rollers and wedges. Duquette is the first MD patient Compton has worked with, and the road to increased functionality has not been without its bumps.

“It’s been hard at times because she is so limited,” says Compton. “For example, it took me three months to come up with a triceps exercise that she had the shoulder stability to perform without causing pain or taking her out of a normal range of motion. It’s a lot of experimentation. She stretches my mind more than any other client I’ve ever worked with.”

The progressive nature of FSHD means that different muscles strengthen or weaken at different paces, adding another challenge. Duquette might be able to perform an exercise on her own with one leg, while Compton has to passively move her through the same exercise on the other leg. And while her biceps are strong, her shoulders aren’t stabilized enough for much strengthening work, which prevents her from performing more advanced exercises. Compton and Weiselfish-Giammatteo constantly work to get Duquette more in tune with her muscles and help her recognize what it feels like to use them. To do this, Compton teaches Duquette anatomy and emphasizes visualization.

“We’ve hit sticking points where she can’t move a muscle past a certain point because I can’t adjust her hips or fix the arch in her back,” says Compton. “While I’m moving her through a range of motion I’ll touch a muscle and say, ‘It attaches here, now picture these muscles sliding together and shortening.’ She’s become more aware of her body and now she can visualize her muscles working on her own.”

For most FSHD patients, success often means simply slowing the deterioration of the body. But Duquette’s determination, and the hard work of her treatment team, have resulted in a more optimistic outlook as they focus on improving her athletic performance as well as her overall health.

Even Duquette’s diet was revamped, as Weiselfish-Giammatteo recommended she eliminate sugar, gluten, and all other substances which could damage her nervous system and speed up muscle deterioration. Compton urged her to eat more, including pre- and post-workout meals to fuel her body for exercise and promote muscle growth.

At age 15, around the time doctors had told her she would be in a wheelchair, Duquette began to take swimming seriously again, beginning in a 10-meter pool. “I was dealing with a different body than when I was younger, but I got used to it,” she says. “For all those years when I couldn’t do any sports, I knew there had to be a way back, and then it finally came. I cried. I was just so overjoyed.”

Duquette swam in progressively longer pools and joined her high school team for her junior and senior years, a privilege her parents allowed only because she maintained nearly a 4.0 GPA in school. At meets, she swam half the distance of her able-bodied competitors. In July 2007, she joined the Connecticut Paralympic team and competed in her first national Paralympic swim meet. She was given the Paralympic functional classification of S4 on the one-to-10 scale measuring disability level (the lower the number, the more severe the disability).

By the end of that summer, she had achieved qualifying times for the U.S. national team in the 50-meter freestyle and backstroke, and the 100-meter backstroke. She also became the junior national record holder for those races at the National Junior Disability Championships in July 2008, and is the only person in the country with an S4 classification to complete the 200-meter backstroke.

“I’ve not heard of another person with FSHD who has reached those goals,” says Weiselfish-Giammatteo. “Nobody in the medical field can really understand her improvements, because they so far exceed the expectations according to predictors of outcome in the medical literature.”

Today, Duquette is training to qualify for the U.S. Paralympic team, which she can accomplish by again meeting the qualifying times in official meets in May and July. She swims two hours a day, five to six days a week, and four hours on Saturday, taking breaks when her body is too fatigued to continue. She also does dry-land exercises every other day for 30 minutes to an hour to stretch and strengthen her muscles, and meets once a week with Compton for strength training and with Weiselfish-Giammatteo for manual treatment. Duquette relays which strokes Coach Lucan wants her to improve on, and Compton creates exercises to strengthen the appropriate muscles, with a special focus on reducing stress on the interior of the shoulder.

“She has an incredible work ethic,” says Compton. “She takes her therapy, training, swimming, sleeping, and eating as seriously as a professional athlete. With her condition, she has to work twice as hard, but she thrives.”

If Duquette makes the U.S. Paralympic team, she will compete in national meets for the next three years in hopes of being selected to the U.S. qualifying team for the 2012 Paralympics. Selection for that team is based on world ranking, race times in national meets, and a swimmer’s potential to medal at the London games.

“Before I started therapy, I was absolutely terrified about the future,” says Duquette. “I did not want to look forward because I didn’t know what was going to happen. If you told me I would be where I am now, I might have jumped for joy, but then again, I probably wouldn’t have believed you.”

Now when she looks forward, she doesn’t just see the Paralympics. She sees a college education and, hopefully, collegiate swimming. She sees a potential career in motivational speaking–she recently gave a 30-minute speech to the Women’s Democratic Club of East Hartford on her struggles with FSHD and her Paralympic dreams. And she sees a transition from a walker to a four-pronged cane and increasing independence.

“She’s traveled a long and difficult road, to say the least,” says Weiselfish-Giammatteo. “It’s a joy to know her and recognize all she has accomplished.”

Duquette says she has no doubt she can make it to London, but she knows her body and condition are always changing, always capable of ruining her fairytale story. But one thing FSHD has improved is her ability to adapt.

“I will encounter situations I can’t control, but I can control how I perceive what is good and what is bad,” she says. “I try my hardest at whatever I do. I am still just a kid who has been given situations and opportunities and tried to make the best of them. I’m really thankful for everything that has happened to me.”

FEEDBACK: Fantastic Kristin! I am 58 and in a wheelchair since 2005. I have FSCD, was diagnosed attached 22 and could play golf until 1997. On Saturday I decided to get into the pool at our home. It was very emotional but an unforgettable experience!

– Christo Loots Pretoria, South Africa