Resources

All Fall Down

Some people have nightmares about falling off cliffs. Brad Williams has nightmares about falling — period.“Whenever I’m walking, falling down is always the major thought on my mind,” says Williams, 39, of Alexandria, Va. “It has to be on my mind a lot for me to be dreaming about it.”Williams has Miyoshi distal myopathy, a slowly progressive form of muscular dystrophy that primarily affects the extremities. He hosts an MDA Internet chat under the nickname “dysf,” and notes that other chat participants also have reported falling nightmares.

To Tilt or Not to Tilt: The Benefits of Tilt-in-Space

A wheelchair with the power tilt (tilt-in-space) feature allows the whole chair to tilt up to 30 or 60 degrees, depending on the model, while maintaining your hip and knee angles at 90 degrees. In most cases, this is done with the touch of a button, allowing you to move your body independently.Let’s take a look at whether tilting is beneficial to the wheelchair user, particularly one with a neuromuscular disease. If so, when should those of us with progressive diseases start thinking about upgrading to a tilt-in-space wheelchair?

Putting Your Best Foot Forward

Though we tend to think of it as something simple, the foot actually is a very complex body part, made up of 26 bones, 33 joints, and more than 100 muscles and tendons. By maintaining the health of this intricate appendage, you can prevent sores, infections or deformities and even wear stylish shoes.

Canes, Crutches and Walkers

More than 6 million Americans, including many with neuromuscular diseases, use mobility devices such as walkers, canes and crutches to assist them with getting around. The type of device people should use depends on how much assistance they require with weight support and balance. Deciding on the right device calls for expert consultation and some product comparisons.

Splish Splash: Easier Ways to Get Clean

If you have a neuromuscular disease, is there anything more energy-draining than taking a shower or bath?It’s important, though, and not just because you don’t want to stink up the joint. Because people with disabilities are more sedentary, they’re at greater risk for pressure sores and circulation problems, said Jodi Bales, an occupational therapist (OT) at the Forbes Norris MDA/ALS Center at California Pacific Medical Center in San Francisco. Bathing or showering every two or three days helps to reduce these risks by moving your body around and rubbing off layers of dead skin.

NIV Masks: Finding the One That’s Just Right

Once upon a time, there was a young woman named Goldilocks. She went to visit her MDA clinic for an appointment with a respiratory therapist (RT) because her doctor said she needed help to breathe better.Goldilocks was going to try on a variety of noninvasive ventilation (NIV) interfaces and find the one that was just right.

Hand Controls Keep You on the Go

Mechanical and electronic hand controls can mean the difference between staying on the road and feeling trapped in your own home.But while hand controls may sound like the be-all and end-all solution, there’s a long (and often expensive) road ahead. Planning, driver evaluations and training all are required in order to find the right equipment to safely meet your driving needs.

Turning Seats Can Enhance Mobility

Sometimes the problem with a vehicle isn’t driving it, but getting in and out. In that case, a turning seat may be a good option.People often would rather keep their SUV or pickup truck instead of getting an adapted van, says T.C. Cole, Access Unlimited’s director of sales and marketing. “This opens up a lot of possibilities that weren’t there before.”

Wheelchair Cushions Can Save Your Butt

Pressure sores, also known as pressure ulcers, ischemic ulcers and bedsores, are a common hazard for people who spend hours daily in a wheelchair.Not everyone is at risk, though, and for many, using a relatively inexpensive foam rubber or gel wheelchair cushion is fine, as long as it’s comfortable.

Stand Up!

Ten-year-old Morgan Fritz of St. Peters, Mo., received a spinal muscular atrophy (SMA) diagnosis when she was 15 months old. Three months later, she began a standing program, and she’s kept at it ever since.Instead of a wheelchair, Morgan, who was the 2005 MDA National Goodwill Ambassador, uses a Standing Dani Dynamic wheel stand from DavisMade as her main form of mobility. She typically stands for four to five hours per day, as recommended by her physical therapist (PT).