Staying Active

Exercising with a Muscle Disease

Exercise: Love it. Hate it. Gotta do it.In these articles, Quest looks at the many sides of exercise for people with muscle diseases:Much of the conventional wisdom about exercising isn’t true for people with muscle diseases, and doing it wrong may cause irreversible muscle damage.As you read through the exercise articles in the magazine, one thing is clear: Each body is unique, and its owner knows it best. Please filter all this information through your own wisdom and experience, and please share it with your physicians, therapists and trainers.

What Kind of Exercise Can Be Done By ...

Unfortunately, even when MG is under control, as it usually is these days thanks to effective medications, lack of endurance when exercising and excess weight gain as a side effect of medication and inactivity remain problematic. People should not exercise to exhaustion but may undertake submaximal aerobic exercise, such as walking, swimming or using a stationary bicycle. It’s also OK to try some mild resistance exercise, using light weights (no more than 5 to 10 pounds) or stretchable bands. Several short periods of exercise are better than one long one.

Nonwalkers With SMA At High Risk for Weight Gain

Children and adults with types 2 and 3 spinal muscular atrophy (SMA) who are no longer walking have an increased risk of being overnourished and overweight if they otherwise have relatively good motor function, a multicenter study shows.The results emphasize the importance of a "dedicated and experienced nutritionist" in SMA medical management, the researchers say.

Enhancing Blood Flow to Exercising Muscles

Ronald Victor admits it: He never set out to study muscular dystrophy. As an adult cardiologist specializing in hypertension (high blood pressure) and neurologic control of cardiovascular mechanisms, he’s a relative latecomer to the muscle field, but far from a reluctant one.Victor, who’s now associate director of the Cedars-Sinai Heart Institute and director of the Cedars-Sinai Hypertension Center in Los Angeles, has been interested for decades in how the body allocates blood supply to various tissues under different conditions — something that’s largely under the control of the autonomic nervous system.

Not Just Horsing Around

It’s good to be back in the saddle.I thought my horseback-riding days were over due to the progression of Friedreich’s ataxia, until I found Therapeutic Riding of Tucson (TROT) in Arizona.I’m finishing up my second 12-week session at TROT, and I’ve noticed that — even with having a neuromuscular disease at age 33 — I’ve experienced many benefits from therapeutic riding.

At Your Service

Eric Cook, who has limb-girdle muscular dystrophy (LGMD) and uses a power wheelchair, no longer struggles to pick up the TV remote or his glasses when he drops them on the floor. Instead, the 57-year-old retired engineer relies on his service dog, Dusty, to help him with these and other needs. In total, Dusty knows and responds to 40 different commands for everyday tasks like turning on a light switch, pushing an elevator button or opening the refrigerator door. When Cook begins to slump in his wheelchair, he even has a command for Dusty to gently nudge him back into an upright position.

Strike a Pose

Editor’s Note: Always consult with your MDA physician and MDA Care Center team before beginning any kind of exercise program. Twenty-eight-year-old Chelsea Singer is not the typical yoga instructor. Her feet are deformed as a result of contractures and stiffened joints. Her hands shake, her knees frequently dislocate, and she lacks sensation in her extremities. Diagnosed with Charcot-Marie-Tooth disease (CMT) at age 11, Singer grew up believing she was frail and found physical activity, such as hiking, painful.

Where to Stay When Away

The Horans have 14 cousins. Every year, they make the trek from Denver to Chicago to attend a high school graduation or other special occasion with their relatives. Finding accessible accommodations can be a challenge for this family of five and their bulky medical equipment. The Horans’ three adult sons have Duchenne muscular dystrophy (DMD), and each uses a power wheelchair.

Four Steps to Booking a Hotel Room for Wheelchair Users

As an avid traveler who happens to be a wheelchair user, I do my fair share of booking hotels. It's a complicated process that I've somewhat mastered over the years. While most people can just go online and book their ideal hotel in a matter of minutes, it's not quite that easy for us wheelchair users. I recently called a hotel to ask if they were accessible, and they told me that they certainly were.

All in the Family

Michelle Murphy, a marketing coordinator from Albany, N.Y., with myotonic muscular dystrophy (MMD, or DM), has been running for as long as she can remember. So when she was diagnosed with MMD in the summer of 2014, she began looking for ways she could use her passion for running to raise money to fight the disease.