Technology

More Than a Game

A typical weekend day for me starts off with my partner or caregiver feeding me breakfast (Cheerios with milk on the side) and ends with me falling asleep to an episode of “Cutthroat Kitchen.” In between these moments, I game with friends from all over the country. Gaming has been part of my life since the 1980s. I grew up playing on all the major gaming systems and had a constant slew of competitors in my brother and neighborhood friends. But as congenital muscular dystrophy (CMD) affected my body over the years, and as game controllers became more complex, I started having trouble keeping up with my peers.

Facebook, Friends and Fundraising

When Ethan Och decided to host a Facebook fundraiser for his 21st birthday last year, there was no question of what organization he was going to support.“What came to mind above all other things was MDA because they’ve helped me do cool things over the years,” he says. Diagnosed with spinal muscular atrophy (SMA) when he was 1 year old, Och fondly remembers the time he spent at MDA Summer Camp during his childhood. In addition, MDA assisted his family in getting vital pieces of medical equipment, as well as offering priceless support and education over the years.

How Drugs Are Developed

Have you ever wondered what has to happen for the scientific community and pharmaceutical industry to develop a new drug and get it on the market, where physicians can prescribe it to treat a neuromuscular disease? Estimates vary, but it’s safe to say that, on average, out of 10,000 experimental compounds, one drug may make it to pharmacy shelves, and it will take at least 10 years and more than $1 billion to get it there.

Voice Banking Offers the Promise of a Natural Voice

A strong voice was the foundation of Penny Abreo’s job as a first-grade reading teacher in Houma, La. But when she heard her words slurring and experienced unexplained fatigue and hand cramps, she and her husband, Aaron, sought medical advice.At 41, Penny learned she had ALS. Also known as Lou Gehrig’s disease or motor neuron disease, ALS affects nerve cells in the brain and spinal cord that control voluntary muscle movement such as speaking, walking and other life functions. As the cells stop working, so do the muscles used to do such activities.

Creative Control

“I believe that if you are laughing, you are living.” This is 34-year-old Jared Aronson’s mantra. And he’s not particular about what deserves a good guffaw. He’ll laugh out loud over a clever play on words, a ridiculous Twitter post or even a temporary misfire as he masterminds yet another invention. Inventing is what fuels Aronson’s mojo. “I love problem-solving,” he says.

A World of Opportunities

In 2010, Darrin Altman, diagnosed with ALS, faced a professional dilemma. His speech was failing, which threatened his career as a Spanish-language court interpreter. “My doctors at UCLA recommended an app to help me communicate, which worked OK, but not perfectly,” Altman recalls. After testing several alternatives, he decided that the solution was to create his own full-featured text-to-speech app, which he would offer to the world for free.

Mobility: Choose the Right Wheels

Purchasing a vehicle can be a daunting experience for many people. Choosing one that accommodates an individual who uses a wheelchair often presents an additional layer of decision-making. When you are ready to buy an accessible vehicle, be prepared to ask and answer a lot of questions. The process typically begins with an evaluation by a certified driver rehabilitation specialist (CDRS). A CDRS conducts an assessment of your abilities and limitations, provides driving instruction and can collaborate with a mobility dealer to determine which vehicle and equipment is the best fit.

Mobility: In the Driver’s Seat

Like many teenagers, Casey Stark wanted to learn to drive when she turned 16. But living with spinal muscular atrophy (SMA) and using a power wheelchair meant that preparing for and completing a driving test required extra planning.Stark, who was a high-performing high school student, knew she could pass a written test, but she wondered how she was going to get behind the wheel. The cost of adapting a vehicle with hand controls and other driving aids was prohibitive, and she didn’t need to drive to manage her day-to-day student activities, so Stark put that dream on hold.

Smart Assistive Mobility Products

Keeping pace with the latest assistive mobility products is a tall order. The marketplace is so dynamic, so innovative, so accelerated; it can be impossible to stay on top of what’s new, what’s different, what’s covered by insurance or what will enhance your mobility and independence. This edition of “Innovation” catches up with some of the smartest assistive mobility products on the market now, as well as tips for selecting the right types to meet your needs.

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.

MDA 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 services are only available in the U.S.

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