Is there a best diet for muscular dystrophy? What about exercise? What mobility devices are worth trying? And what home modifications will give you access to all parts of your home? Here are some tips and information to make your daily life easier.
Muscular dystrophy diet
There is a lot of research and interest on how diet can improve or worsen various chronic diseases, according to Lauren Elman, MD, a neurologist and professor of neurology at the University of Pennsylvania Hospital in Philadelphia.
“Unfortunately, there aren’t really any ways that we know of to improve or change the course of muscular dystrophy through diet. There is nothing special about diet to help or reverse muscular dystrophy,” says Dr. Elman.
Elman says the general dietary suggestion is to maintain a healthy weight.
“Overweight is kind of the enemy in muscle atrophy. You don’t want to carry too much weight on weak muscles because that will make things more difficult in everyday life,” she says. Weight control mostly depends on the proper number of calories, since people with muscular dystrophy often have difficulty exercising. However, “we don’t recommend people lose a lot of weight because you need good nutrition to maintain muscle health,” adds Elman.
In terms of macronutrients, although protein is typically associated with muscle growth, a high-protein diet isn’t recommended for people with muscular dystrophy, Elman says.
“There is absolutely no recommendation for a high-protein diet for people with muscular diseases. People with muscular dystrophy should eat the same recommended amounts of protein that a healthy person without muscular dystrophy should consume.
Exercise with muscular dystrophy
According to Elman, exercise advice for people with muscular dystrophy should be very individual. The range of abilities in people with muscular dystrophy is very diverse. It can move from people with a slight disability to the other end of the spectrum, where people are in electrically powered wheelchairs and really have limited mobility,” she says.
For those who are able-bodied, exercise can be a very beneficial part of their regimen, but it’s not really recommended for individuals who struggle, says Elman. “The most helpful advice I can give an individual with muscular dystrophy when it comes to exercise is, ‘If it hurts, don’t do it.’ Anything painful is really beyond what is necessary or recommended, and that means you’ve gone too far.”
“It’s also a general rule with neuromuscular disease that any muscle that doesn’t have an anti-gravity force shouldn’t be exercised,” Elman says.
“There have been small studies that show that in various situations, non-stressful exercise may improve things like quality of life, but there has never been anything that shows that it slows disease progression,” Elman says.
“I tell my patients, ‘You can’t exercise your way in or out of this disease.’ If improving or slowing muscular dystrophy were simple, all my patients would belong to the finest gyms out there because they are very dedicated individuals; if they could do something to prevent themselves from Sitting in a wheelchair, they almost certainly will. It’s not a matter of not trying enough; it’s simply not possible,” Elman says.
Manage your prescriptions for muscular dystrophy
For most types of muscular dystrophy, Elman says, there are no medications for the underlying disease itself. “There are only a few cases of muscular dystrophy that we have actual treatments for. In most cases, we only get supportive treatment, which is medication to control the symptoms.”
She adds that depending on the type of muscular dystrophy a person has and the progression of the disease, some people need medications for conditions that may develop as a result of the disease.
Your health care team is the best resource for determining which medications may help with your symptoms or complications and the best way to take them. Your pharmacist can also recommend tools such as pill organizers, easy-to-open pill bottles, and refill reminders if you have trouble remembering to take your medications, refill them, or simply take them out of the bottle.
Complementary and alternative medicine for muscular dystrophy
Although many people are very interested in how various nutritional supplements or herbs can help treat muscular dystrophy, there are no specific supplements that have been shown to be helpful in improving symptoms or altering the progression of the disease unless the person has a specific deficiency, as well. Elman says.
“Heart health, bone health, and gastrointestinal (GI) tract health are all important, but no specific dietary supplement has been shown to alter the course of neuromuscular disease,” she says.
Vitamin D levels should be checked because bone health is very important in cases of muscular dystrophy due to the higher risk of falls, Elman says. “If a person is deficient, I would recommend vitamin D and treat them—not because it might help with muscle atrophy, but because it might help prevent them from having a fracture if they fall,” she says.
Essential oils are collected from plants using processes such as distillation (Using steam) or cold pressing. The extracted material is then added to a “carrier” oil to create the final product. The oils can be inhaled for their scent or massaged into the skin and can have therapeutic benefits for some conditions.
“Patients have told me they enjoy massages with essential oils, but beyond that physical experience of enjoyment, I don’t know of any medical benefits for muscular atrophy,” Elman says.
Easy access home and muscular dystrophy
The adjustments that need to be made to the living space depend on the person and their needs. Wheelchair accommodations may be necessary, but there are smaller changes that can make life easier and safer for people who are still walking.
The Muscular Dystrophy Association (MDA) recommendations for making living space more accessible include:
- Alter doorways by removing moldings or remove doors altogether to help wheelchair access more easily.
- Replace door handles with lever-type handles, or install an automatic door opening system.
- Lower the bed with a smaller box spring or without a box spring.
- Use the elevator or lift to get in and out of the bed or bathroom.
- Install a floor-to-ceiling grab bar to help someone get up from a chair or bed.
- Install handrails in stairs, in the bathroom, and throughout the home, if needed for support.
Before you invest a lot of money in home renovations, talk to members of your muscular dystrophy care team, including an occupational or physical therapist, to get advice on what changes will help you most in the moment. The Muscular Dystrophy Association Resource Center lists additional sources of information about home modifications.
Movement aids for muscular dystrophy
Whether or not to use a mobility aid and what kind of ongoing conversation you have with your doctor, Elman says. “Depending on the individual, people may be reluctant to use mobility aids simply because shifting your mind can be difficult,” she says.
The conversation usually focuses on two important issues: energy conservation and safety, Elman says. “Mobility devices can help a person stay active and out in the world and continue to participate in their daily activities safely; that is our main goal, to keep them engaged in their active daily lives,” she says.
Braces, or orthoses, that fit over the ankles or knees are specially designed to conserve energy and help with the work of walking so people get more “bang for the buck” every time they take a step; They can also reduce the risk of trips and falls, Elman says. “Although some people are reluctant to try braces, I find that about two-thirds of the people I prescribe find them to be very helpful,” she adds.
In addition to braces, the following can help a person move safely and independently:
- cane or walking sticks There are two main types of canes: a single-point cane and a four-point cane, in which four pegs are attached to the main shaft. Some people also choose to use two canes, one in each hand.
- crutches These can hold more weight than sticks. Newer stabilizing crutches with support behind the shoulder can help the user stand straighter.
- They walked A walker is a good option if you notice you’re starting to stumble more. The standard walker has rubber grips on the bottom to help with stability.
- They walked The pulleys are like walkers, but instead of flat rubber handles on the bottom, the pulleys have wheels on the bottom.
- Wheelchairs and scooters Eventually, it may be necessary to use a manual or electric scooter or wheelchair to travel longer distances.
A physical therapist, working alongside your doctor, can help you decide which mobility devices will be most beneficial to you and teach you to use them properly.
Learn more about adaptive techniques and devices for muscular dystrophy
Traveling with muscular dystrophy
With the right preparation and advance planning, travel can be enjoyable for someone with muscular dystrophy, Elman says. “I’ve had a lot of people I care about travel the world with and have fun trips and very good memories, but it takes a little more planning than people who don’t have extra needs,” she says.
One website that can help you decide which hotels meet your needs is Accessible Friendly Hotels.
Keep in mind that some ways to travel are easier than others, Elman says. “For example, cruises are a very good way for people in wheelchairs to travel because almost everything is accessible. It can be somewhat difficult to bring a power wheelchair on a plane because they [can be] “It gets damaged when you’re in the cargo hold, and so you have to be prepared just in case that happens,” she said.
“Almost all hotels have accessible rooms, but you need to make sure you book them in advance. If you have specific needs that are not always included in a wheelchair-accessible room – for example, if you need a Hoyer lift to move between a bed and a chair — that would have to be arranged in advance,” Elman says.
If you use a wheelchair, the key to a successful travel experience is to communicate beforehand, Elman says. “Think through every step of your trip, and email or call your travel agency, airline, and hotel to let them know exactly what you need. Doing research and planning on transportation and dining options in advance can help you relax and enjoy yourself once you reach your destination.”