Technology

Give Me a Lift

You’re still transferring independently, but you’ve fallen a couple of times on your way from the wheelchair to the bed.Your caregiver still lifts you in and out of the bathtub, but her groans from back pain are getting louder.It’s time to start thinking about a mechanical or powered lift system that you can use at home, and maybe one for work, too.

One Good Turn

When turning over in bed becomes difficult for a person with muscle weakness, usually two people suffer sleep deprivation — the “turnee” and the “turner,” or person who wakes up several times a night and helps with repositioning.Consequently, any sleep aid for people with mobility problems is a sleep aid for their caregivers as well. Although some sleep aids, such as alternating pressure mattresses or turning beds, can be pricey, they provide a two-for-one solution to a frustrating problem, and pay big health dividends over time.

Gene Therapy Rescues Mice with SMA

Scientists at four U.S. institutions have successfully used gene therapy to treat very young mice with a disease resembling severe spinal muscular atrophy (SMA). Study results were published online Feb. 28, 2010, in the journal Nature Biotechnology.Newborn mice that received the treatment demonstrated near-normal motor function (movement) and brain-to-muscle signaling, as well as a dramatic increase in length of survival, with most living upwards of 250 days as compared to untreated mice, which had an average life span of 15 days. (None of the treated animals have succumbed to SMA so far.)

Front, Middle or Rear? Finding the Power Chair Drive System That's Right for You

Whether choosing your first power wheelchair or your next power wheelchair, picking the correct drive system for your needs is one of the first and most important decisions you’ll make.The location of the drive wheels (the wheels powered by the motor) in the rear, middle or front of the chair has a definite effect on the chair’s performance in different environments.

Exon Skipping in DMD: What Is It and Whom Can It Help?

Exon skipping is a strategy currently being developed for Duchenne muscular dystrophy (although it may have application to other genetic diseases down the line) in which sections of genetic code are “skipped,” allowing the creation of partially functional dystrophin, the muscle protein missing in DMD.

In Focus: Straightening the Growing Spine

Payton Mueller's parents knew something was amiss by the time he was 9 months old. “Payton crawled really early,” recalls his mother, Rachele Krebsbach of Crosby, N.D. “He pulled himself up on furniture at 7-and-a-half months, and he was into everything a lot sooner than I had expected him to be. But then he just kind of stopped doing everything.”

Newborn Screening Recommended for Pompe Disease

The Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (DACHDNC) today voted to add Pompe disease (acid maltase deficiency) to a list of diseases that it recommends states screen for in newborns.The list is known as the Recommended Uniform Screening Panel (RUSP).

Fashion Forward

Children and adults living with neuromuscular diseases often have to make a choice between fashion and function. Skinny jeans and tall lace-up boots may be all the rage, but items like those present plenty of challenges in terms of getting them on and then staying mobile afterward. Even regular jeans and sneakers can be a hassle, leaving many to simply don sweatpants and slip-on shoes, but self-esteem can take a hit as a result.

Home Smart Home

As the world awaits the full realization of the Internet of Things (IoT) — the computer- based platform on which all home automation will reside — the individual products and innovations that will one day comprise it are slowly trickling out. These smart home technologies will likely end up in all homes in the future; however, the difference in their effect on a typical homeowner compared to one living with muscular dystrophy, ALS or a related muscle- debilitating disease is the difference between additional convenience and a game-changing transformation.

Choice Seating

Manufacturer, brand and model are merely the first choices in the methodical process of wheelchair seating assessment. These days, it’s wheelchair accessories that present the widest selection and biggest potential for enhancing independence and mobility. There are accessories for comfort, attachments for smoother rides and additions designed to maximize independence for people living with neuromuscular diseases.