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Quest Issue 2, 2022 -
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Quest Issue 3, 2021
Recent Quest Articles
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.
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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.”
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New Directions in Autoimmune Disorders
What do inflammatory muscle diseases (myositis), myasthenia gravis, Lambert-Eaton syndrome, and dozens of other disorders like lupus and rheumatoid arthritis, have in common?In all these and more, the body’s immune system, which normally detects and destroys invading microbes that cause illness, somehow has taken a wrong turn, and is attacking its own tissues, causing what’s known as an “autoimmune” (self-immune) disease.
Read MoreWheelchair 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.
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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.
Read MoreEuropean Team Combines Stem Cells, Gene Correction to Treat DMD-Affected Mice
A European group of researchers successfully used a combination of genetic correction and stem cells to treat Duchenne muscular dystrophy (DMD) in mice with the disease. The compound they used for the genetic correction was developed by Judith van Deutekom, then at Leiden (Netherlands) University Medical Center, with MDA support.
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Not Enough ZZZzzzs?
Do you suffer from sleep disturbances — snoring, choking or gasping, or restless tossing and turning?Do you wake up in a sweat in the middle of the night, or arise in the morning feeling fatigued, or with headaches, sore throat or dry mouth?Do you experience memory and concentration problems, or find you’re excessively sleepy during the day, falling asleep when you normally shouldn’t, such as during eating, talking or driving?
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How to Get Your Child's School to Provide Assistive Technology or Help with Learning Disabilities
State and federal law requires school districts to provide assistive technology (AT) and specialized instruction for learning disabilities (LD) to qualifying students.But parents may have a difficult time convincing their school districts that these services will benefit their child.Parents stand a better chance of getting special services if they know what to ask for, why they’re asking for it and how to ask for it.
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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.
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Debatable Destinies
When Rena Szymanski turned 40, she expected to slow down a bit. She never had been athletic, and it sometimes seemed to her that climbing stairs was harder for her than it was for other people, but she thought her strength was “normal” in general.Soon after her birthday, though, she noticed increasing weakness. “I didn’t know what was wrong with me,” says Szymanski, who until recently was working at a stressful job an hour away from her home in Stony Point, N.Y. To her knowledge, there is no history of muscle disease in her family.
Read MoreMDA Resource Center: We’re Here For You
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 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.
