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Quest Issue 2, 2022 -
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Quest Issue 3, 2021
Recent Quest Articles
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.
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Connecting the Dots
Just a few years ago, almost nothing could be said to parents like those in “Families Left with Questions,” other than that their child had a congenital (present at or near birth) form of muscular dystrophy.Andrew Loewi of Denver compares research on his daughter Samantha’s congenital MD (CMD) to Duchenne MD, for which the gene was identified in 1986. “What was so discouraging, so exasperating, for us, was that without even knowing what gene was involved, it seemed we were so far behind the eight ball that we’d never catch up.”
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Despite the Challenge, People Love Their Live-Ins
It’s not easy to live with another person. “Stuff” comes up, like privacy (“stay out of my stuff”), cleanliness (“pick up your stuff”), respect (“get that stuff outta my face”) and trust (“where’s my stuff?”).Yet many people with physically disabling conditions find that living with a personal care attendant solves more “stuff” than it creates — critical stuff like needing reliable help getting in and out of bed, dressing, cooking, or going to the bathroom.
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Secrets of the Salamander: Can Stem Cells Repair Damaged Muscle Fibers?
Long before "stem cell" became a household term, people had observed that plants and animals can, within limits, repair damage they sustain.Wounds heal, broken bones knit, and lost blood is replenished. Mowed grass soon regrows, and barren trees sprout new leaves in spring. Cut off a limb of a salamander or some other amphibians, and it regrows. But the limbs of other animals, once gone, can’t grow back.
Read MorePutting 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.
Read MoreMatters of the Heart: Cardiac Problems in Emery-Dreifuss MD
Jason Adamo’s life isn’t markedly different from that of any other teenager. The 17-year-old high school junior has a part-time job as a cook at a restaurant near his home in Port Charlotte, Fla., and enjoys flying radio-controlled model helicopters in his spare time.But had it not been for the alertness and persistence of his mother, Katherine, an intensive care nurse, things could have taken a tragic turn not long ago.
Read MoreTo 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?
Read MoreFatigue
In its broadest sense, fatigue is defined as a lack of energy, a subjective feeling of being tired. Fatigue also occurs when muscles decline in force — in other words, they poop out with overuse.Most people complain of fatigue at one time or another, says Julie C. Haviland, a physician at St. Vincent Mercy Medical Center in Toledo, Ohio.
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Parent-Caregivers: Learning to Let Go
College senior Roy Avery defines the difference between a parent and a caregiver this way:“A caregiver is someone who’s there to help you meet your needs.”A parent has a vested interest in your well-being and future. They love you.”Avery, 23, has Duchenne muscular dystrophy (DMD) and can’t lift or position his arms and legs. He relies on a power wheelchair and noninvasive ventilation to help him maintain a B+ average in computer science at Central Washington University in Ellensburg.
Read MoreMcArdle’s Disease: The Right Diagnosis Can Lighten the Load
When Michael Marino, 47, of Selden, N.Y., was a child, his parents thought he was lazy and sent him to a nautical military school to straighten him out. It didn’t.He had his first muscle cramps at age 9 or 10, from the extreme sit-up regimen, and couldn’t straighten up for two days.“I thought the pain meant I was building muscle, but now I know I was damaging it.”
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.
