As the autumn leaves start to fall, the holiday season is upon us. And between the hustle and bustle of decorating, shopping, food preparation and social gatherings, the holidays can be a source of increased stress. Anyone can feel overwhelmed this festive time of year, but for people living with neuromuscular diseases, managing the additional activities and expenses is crucial to maintaining mental, physical and financial health. Consider the following tips to help you plan ahead.Read More
Home, Sweet Modified Home
From navigating tight bathroom spaces to working your way through a long hallway, homes can present many challenges when it comes to mobility and accessibility for those with neuromuscular disease.Making large-scale modifications is always an option, but with the cost of renovations, it’s worth pursuing budget-friendly strategies first, says Amber Ward, occupational therapy coordinator at Carolinas HealthCare System, which houses the MDA/ALS Center at Carolinas Medical Center.Read More
ADA 25th Anniversary
On July 26, 1990, President George H.W. Bush signed into law landmark civil rights legislation called the Americans with Disabilities Act (ADA), which is intended to eliminate barriers for people with disabilities. The law mandates that individuals with disabilities have equal access to public accommodations, employment, transportation, state and local government services, and telecommunications.Read More
MDA Transitions: A Bright Future
“I was already signed up for Duke, and was wait-listed for Yale, but waiting for Harvard. When I opened the Harvard letter, I got the shock of my life, and that was it!” says 17-year-old Caroline Zheng on being accepted to her dream school, Harvard, where she’ll start classes in the fall. For Zheng, who has congenital muscular dystrophy (CMD), and for many young adults who live with a neuromuscular disease, college isn’t just a means to pursue academic and career success; it’s also an empowering step toward a more independent adult life.Read More
The Best-Worst Thing
Upon hearing my diagnosis — type 1 myotonic muscular dystrophy (MMD, or DM) — at the age of 20, I must admit, my world crumbled for a moment. I’ll never forget how the room seemed to shrink and spin, how the doctor’s voice morphed into white noise, and how visions of immobility caught my breath.Read More
CMT: To Exercise or Not to Exercise?
To exercise or not to exercise? I can almost hear the people reading this article screaming, “NOT!” Truthfully, until about a year ago, I would have been screaming NOT the loudest, the longest and with absolutely no hesitation. I have been affected by Charcot-Marie-Tooth disease (CMT) since birth. I have not known a single moment without dealing with CMT. Learning to walk as a toddler came later than most, and with many more falls. Riding a bicycle was out of the question for me because my balance was just nonexistent. Don’t get me wrong, not all people with CMT are unable to ride a bike. My sister and my daughter both ride a bicycle, and both have CMT.Read More
What About Exercise with LGMD?
Katherine Mathews is a neurologist at the University of Iowa Hospitals & Clinics in Iowa City, where she co-directs the MDA clinic. She recently discussed exercise in limb-girdle muscular dystrophy (LGMD) with MDA medical and science editor Margaret Wahl. Q: Do the different types of limb-girdle muscular dystrophy have implications for what you tell people about their activities?Read More
All Aboard Accessible Amtrak
Eagerly anticipating the arrival of our train at the Hammond (La.) Amtrak station, my husband and I were as excited as the animated grade-school children running among the suitcases. All of us repeatedly gazed down the tracks trying to get the first glimpse of the engine light.Hammond is a 30-minute drive from our home and the second stop the “City of New Orleans” makes heading north to its final destination — Chicago. Months earlier, we had booked our reservation with Amtrak — after carefully comparing it to driving and flying.Read More
Living with MG: Personal Stories
Autoimmune myasthenia gravis is an unpredictable disease. On the one hand, it is a condition that can be effectively managed with medication and surgical interventions. On the other hand, even with treatment, symptoms may come and go, and treatments that once worked unaccountably may stop working.Read More
Adapting to Change After Spinal Surgery
Tina Duong, a physical therapist at Children's National Medical Center in Washington, D.C., sees many children with neuromuscular disorders who undergo spine-straightening surgery. "From a rehabilitation standpoint, it would be really helpful if surgeons had a physical therapist or other rehabilitation specialist discuss with parents anticipated changes to their child’s movement and ability and need for adaptive equipment," she notes.Read More
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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 800-572-1717. If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.