Living with Muscular Dystrophy

Kevin’s Story

Kevin was 28 when he was diagnosed with has facioscapulohumeral muscular dystrophy, or FSHD. “I don’t want my identity to be my muscular dystrophy. I don’t want people to think I sit at home and can’t do anything. I don’t ever want to have a day where I don’t have lots to do.”

Leading an active life with muscular dystrophy has its challenges, but Kevin takes them all in stride. There was the frustration this former distance swimmer and three-time Junior Olympian felt when he couldn’t swim 25 yards. And the time he was headed to a black tie dinner only to cancel his plans when he learned that one of the two wheelchair cabs in town was broken. “That was a real ah-ha moment. I don’t want to be in that position again…the position of not being able to do something because of my limited mobility.”

Kevin

Kevin was living in Washington, DC when he was diagnosed with FSHD. As the muscle inflammation, wasting, and loss of balance got worse, his doctor suggested he move someplace warmer that had FSHD specialists. Kevin chose Atlanta. “I took a big pay cut. I was looking for a less stressful job with really good insurance. My new company offered long term disability insurance from day one. I was thinking long term without making it sound like I was thinking long term.”

“Stairs were tough, but I could do them. Then I decided to use the cane, and then the crutch. I had six trips to the ER during the first two and a half months of the year, all from falls. My doctor said next time it would be a broken hip, and I’d be in the hospital for months. That’s when I got the wheelchair. Now I can do so much more.”

Earlier this year Kevin decided to go on disability. Volunteer work keeps him busy, and his physical and mental health has improved. He works with the Humane Society and helps lead a fundraiser supporting AIDS vaccine development. He’s registering to be a citizen lobbyist during the next Georgia legislative session. Kevin also has an idea to help others with FSHD. “We need something to help people when they’re first diagnosed. New patients ask the same questions. It’s overwhelming to learn you have a disease you can’t even pronounce. Social media is helping connect patients and break down the isolation faced by many with FSHD.”

As Kevin enters his second decade living with muscular dystrophy, he laughs that he turned 40 and got a minivan in the same month. “I don’t think that’s how your midlife crisis is supposed to go.” When asked if he thinks about the next ten years, he says “I can’t go there. I can’t stress about the things I can’t control. Today my life is great.”

CDC would like to thank Kevin for sharing this personal story.

Conor’s Story

Conor with his family

Conor actively advocates for people with disabilities. He pointed out to the staff at his college that the newly built walkway from disability services to another campus building had stairs at one end, and then he worked with disability services to get a ramp built. Conor also scored the winning goal in the national championship game of the United States Power Soccer Association. Conor has Duchenne muscular dystrophy. Having Duchenne means his muscles, including his heart and muscles that control breathing, will get weaker and weaker. Learning about Conor’s life is an important part of understanding what can be done by and for people with Duchenne.

Conor focuses on his living situation and plans after college. He says he might like to “live somewhere closer to the city, but not anywhere too expensive, and maybe have a few roommates with Duchenne or other disabilities. I’d like to have more information on places to live on my own.” Conor’s mom adds, “When Conor was diagnosed at age 4, the Internet was new, and things written about Duchenne were very discouraging. Now medicine is advancing and there are clinical trials for new treatments. That’s why we need information on college and independent living.”

Living independently is one part of transitioning to adulthood. Managing medical care is another. Individuals with Duchenne see many different specialists. Conor’s mom calls herself the care coordinator. She shares, “There’s a nurse coordinator at the Muscular Dystrophy Association clinic in the children’s hospital, but once you age out of the children’s hospital, it’s a problem. If Conor gets to the emergency room for some reason, the first doctor I would call is the pulmonologist (a lung disease specialist). I feel like that’s number one.” For people living with Duchenne, care coordination often becomes the responsibility of the primary caregiver. Conor’s mom says she’s the one who usually tells the other doctors about Conor’s medicines, treatments, and other care management details.

Conor’s mom says it can also be tough finding care for Conor. A few years ago, Conor needed cataract surgery. Ophthalmologists (eye specialists) typically do cataract surgery at outpatient surgery centers, but Conor needed to be at a hospital. “It took us a year and a half until I found a doctor who would do it.” She stresses the importance of care coordination, which gets more difficult as men like Conor begin managing their own care and transition to doctors who care for adults.

“I decided that eventually I have to manage my medical care, so I should try to understand it better, emailing and setting up appointments,” says Conor. He says people should “teach kids how to manage their medical expenses and their living situations after college, and maybe also talk about how you don’t always have to be stuck at home. You can be outgoing and do a lot of stuff. And you can make a difference if you really try.”

Conor and Kasey, his personal assistant and best friend, are busy making plans. They go to the movies on Fridays and enjoy playing video games. Last summer they attended a three-day outdoor music festival with 40,000 fellow fans. Both men will tell you they enjoy getting to know bands before they make it big.

CDC would like to thank Conor for sharing this personal story.