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Funding Accessible Vehicles

When my mom and I had to purchase a new accessible van about two years ago, we were not in a comfortable financial situation to do so. I was going into my junior year of college, and we planned to hold off until I graduated.Unfortunately, that plan changed when our van died for the final time a couple of days before my 20th birthday. We ended up purchasing a used Dodge Caravan that kneels to reduce the steepness of the ramp and has tie-downs to secure my power wheelchair. My mom took out a loan to help pay for it. Fortunately, the mobility dealer supplied us with a list of grants that we might be eligible for.

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The Smart Home’s New Story

You've probably heard of the "smart home." For close to two decades, it has been a regularly covered topic across all sectors of media. Each year, a story in a magazine, on prime-time news, or in an industry outlook report shows a futuristic take on a home that is automated to the point that it appears to read its occupant's mind. But what began as "the home of tomorrow" has become increasingly practical as new products and technology are rolled out on the market.

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The Hidden Benefits of Volunteering

Blaine, a 6-year-old black lab, is assistance dog extraordinaire to Bella Andrade, 19, who lives with spinal muscular atrophy (SMA) and uses a power wheelchair. Receiving Blaine from the Minnesota nonprofit Can Do Canines in October 2017 was a life-changing gift for Bella. With a verbal command, Blaine will open a drawer, push a handicap door access button, or retrieve a dropped pen or smart phone.

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MDA Q&A: Let's Talk

The MDA Resource Center is available to provide one-on-one support. Here, Resource Center specialists answer Quest readers’ questions. Q: How can I find a therapist who knows about mental health and living with neuromuscular disease? —Jeffrey, New York First, we applaud you for prioritizing your mental health. Because neuromuscular diseases are considered rare, it might be difficult to find a mental health professional who is familiar with a specific disease. We recommend looking for a therapist who has worked with people living with chronic health conditions. Consider asking if they are also willing to counsel your family members, as a neuromuscular disease can also affect loved ones in their own ways.

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Mental Health Is for Everyone

How are you? We're asked this question frequently, and we often respond, "Fine." But the truth is, many times we're not fine. Life is complicated. And for people living with a neuromuscular disease or caring for a loved one who is, there are a multitude of challenges to navigate.Having a lot to deal with, feeling alone, and coping with medical trauma and loss are among the many life experiences that can affect mental health. It's important to know that no matter what you're feeling, you don't have to go through it alone.

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Help Wanted

Sarah Schwegel, an organizing and advocacy specialist with Paraquad in St. Louis, began working from home last March as the COVID-19 pandemic emerged in the United States. Having spinal muscular atrophy (SMA), Sarah realized that she was at higher risk for complications if she contracted the illness. Her employer supported her request to work remotely.

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Education Within Reach

To make planning for and going to college easier for students with neuromuscular disease, MDA launched a new online workshop called Access to Education: Higher Education. This no-cost educational program, available on-demand, offers an overview of common considerations, tips for choosing a school, information on financial preparation, and guidance on finding support if students encounter access barriers during their higher education experience.

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How to Make a Decision About a Clinical Trial

Colleen and Chris Labbadia of Geneva, Fla., became concerned when their son, Brendan, was slow meeting early physical milestones. He was diagnosed with Duchenne muscular dystrophy (DMD) before his second birthday, and when he was 4, they enrolled him in a clinical trial for an experimental drug. "It was the hope for a better future for Brendan," Colleen says.

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MDA Q&A: Top of Mind

You don’t have to navigate your neuromuscular disease journey alone. The MDA Resource Center is available to provide one-on-one support. Here, Resource Center specialists answer Quest readers’ top questions. Q: I have oculopharyngeal muscular dystrophy (OPMD). Is COVID-19 vaccination safe for people with neuromuscular disease? Are there any side effects?

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Find the Right Resources

Amy Curran, 38, lives in Philadelphia with GNE myopathy, as do her three older siblings. Considering the high cost of accessible vehicles, this close-knit family decided to pool their resources and buy one wheelchair-accessible van. They use an online calendar to keep track of who’s using the van when. The van fits two power wheelchairs, so they often take turns going on outings in pairs.

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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 programs are only available in the U.S.

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