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Quest Issue 2, 2022 -
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Quest Issue 3, 2021
Recent Quest Articles
Service With a Smile and a Wag
At Payton Rule's high school in Missouri, the school year always ended with field day — a break from academics where kids demonstrated school spirit and played fun games on the athletic field located down a steep hill. Payton, who has Charcot-Marie-Tooth disease (CMT) and uses leg braces, missed the celebration during her first years at the school, because she could not safely maneuver the hill and the field on her own.
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Leading the Quest for Change
For years, MDA has worked to empower people living with muscular dystrophy, ALS, and related neuromuscular diseases to reach their fullest potential. And while strides have been made through innovations in care, research, and advocacy, there is more work to do. So this year, we're going bigger. We're declaring 2022 the Year of Independence.
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A New Direction for Charcot-Marie-Tooth Disease
Charcot-Marie-Tooth disease (CMT) is not one disease but a spectrum of nerve disorders. It is named after the three physicians who first described it in 1886: Jean-Martin Charcot and Pierre Marie of France and Howard Henry Tooth of the United Kingdom. CMT affects the peripheral nerves that run through the arms and legs, connecting the brain and spinal cord to the muscles and sensory organs. It occurs in approximately 1 in 2,500 people.
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The Hidden Benefits of Volunteering
Blaine, a 6-year-old black lab, is assistance dog extraordinaire to Bella Andrade, 19, who lives with spinal muscular atrophy (SMA) and uses a power wheelchair. Receiving Blaine from the Minnesota nonprofit Can Do Canines in October 2017 was a life-changing gift for Bella. With a verbal command, Blaine will open a drawer, push a handicap door access button, or retrieve a dropped pen or smart phone.
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Positive Relationships
Trust. Honesty. Mutual respect. Affection. The key elements of a healthy romantic relationship are the same for all couples. When one or both partners have a disability, it can affect how they each approach daily tasks, but it doesn't change the need for constant give-and-take. For adults living with neuromuscular disease, building and nurturing positive intimate relationships may even be especially important, because there are unique dynamics due to physical limitations or the progressive nature of the disease. Fortunately, couples can rely on tried-and-true strategies for forming healthy relationships.
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Working Together
Anyone who lives with a neuromuscular disease that affects mobility knows that it often takes a village of caregivers to get through a week, let alone a day. For many people, personal care attendants (PCAs) provide a large part of that caregiving. PCAs are professionals who provide home care to people with disabilities who need assistance with daily living activities. This can range from helping them get ready for the day to helping them take medication to performing chores and errands.
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Family Inheritance
In genetics, inheritance doesn't refer to property or financial assets. It is the process by which genetic information is passed from parents to children. Most neuromuscular diseases are genetic disorders, meaning they are caused by changes in our genes. While these changes, called gene mutations or variants, often are inherited from parents, they don't always cause disease. For many neuromuscular diseases — and the number grows every year with continuing research — scientists have identified disease-causing gene variants. They also have been studying the inheritance patterns, meaning how a gene variant may be passed from one generation to another and how it might affect members of a family.
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View From the Top
Hiker Skye Lemmen raised funds for MDA while trekking the Pacific Crest Trail When Skye Lemmen, of Grand Rapids, Michigan, decided to hike the Pacific Crest Trail, she knew she wanted her endeavor to support MDA and the neuromuscular disease community. So, while hiking the approximately 2,650 miles of trail, which extends from the Mexican border to the Canadian border in the Western United States, Skye raised more than $5,000 for MDA through Donor Drive. Inspired by her dad, who lives with facioscapulohumeral muscular dystrophy (FSHD), Skye wanted to support MDA for the assistance her family has received over the years.
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Making Peace
A common but rarely spoken truth within the neuromuscular disease community is that it is a continuous battle to deal with the emotional repercussions of watching the mobility you have dwindling, before your very eyes, as your disease progresses along its fated course.For the first 15 years of my life, my strength was consistent. But my doctors had always warned me that spinal muscular atrophy (SMA) would dictate how my muscles deteriorated and that it would occur in stages. Once the deterioration began, it would enact a progressive downhill slope.
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Keeping a Sense of Humor
Many years ago, I helped my grandmother, then in her 90s, downsize from her apartment to a single room in an assisted-living wing. Surveying the brimming room, I tried to say something encouraging: "Grandmom, it's like you're going back to college." Her response surprised me. "Actually," she said, "I like to think of it as finishing school." Dark humor indeed. I like to believe I've inherited her remarkable sense of humor (and verbal cleverness).
Read MoreMDA Resource Center: We’re Here For You
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.