“Help! I Need a [Wheelchair Van, Wheelchair, Rollator, Shower Bench, etc.]: A Quick and Dirty Guide to Getting Used Equipment

In the parking lot of the home improvement store, a man pulled next to us and introduced himself, apologizing profusely. He saw us shopping for flowers in the store and didn't want to bother us, but he was desperate. His father had suffered a #stroke and they were learning how to take care of him but had no easy way to get him to and from his medical appointments. How could they find an affordable van with a lift, like ours?



Needs like this often come out of the blue. With your hands full trying to cope with a medical situation, you don't have time to fool around with financing and insurance. But here are some ideas for you based on years of dealing with #

MultipleSclerosis and some pretty tight situations along the way. It will still take some looking up numbers and maybe a lot of calling around on your part. Also realize that I haven't personally used most of the places listed below, so please be careful and do your homework about any buyers and sellers you deal with. But I and others have found what we needed — in the nick of time — at these places, so good luck and here goes:

— Before we start, check if your doctors and medical professionals offer transport services to your appointments, and look into Uber WAV accessible ride-shares. These are hit-or-miss but probably beats yelling out tons of money. Paratransit services can be good but they take a long time to qualify and use.

— Starting with big-ticket items first, you'll be surprised by how many used wheelchair-accessible vans you find on Facebook Marketplace. Also eBay, but with any vehicle you have to be careful about vehicle history: Some years ago, there were a lot of very good deals there, but it turned out that some were reconditioned after flood damage. Do your homework. Finally, here are tips for buying used wheelchair vans, with links: newmobility.com/tips-for-buying-a-used-wheelchair-van

— For other equipment, check out eBay, and tell all of your family and friends to scout for wheelchairs and scooters at local goodwill, resale shops and garage sales.

— Search websites like Facebook Marketplace, Craigslist, Quipit (goquipit.com) and the private Facebook group Disability Related Gently Used Equipment for Sale (tinyurl.com/ypmc2bkc).

— Try contacting your local Center for Independent Living, which is a clearinghouse for #disability-related resources and can probably point you in the right direction.

— Look up your local chapter of United Spinal Association, which has a lot of online resources local branches supporting people with mostly mobility-#disabilities (legs, arms and such), and the local groups probably keep listings of used equipment available in your area.

— Find your local Easterseals, which often has contacts to find equipment, along with caring, knowledgeable people. Check out other nonprofits as well, like United #CerebralPalsy and Habitat for Humanity. As one of the Easterseals people told me, their funds are limited and often they're winging it, but they'll work on situations until they can help someone in need.

— Look up your state's assistive-technology agency, which may keep listings for used adaptive equipment at a savings.

— Look up used equipment at New Mobility magazine, the member publication of United Spinal. These people have been at it a long time and I guarantee you'll find articles about this or any topic related to assistive equipment and anything else you may be struggling with. For example, check out newmobility.com/what-to-do-with-your-used-wheelchair for leads to donate or find equipment.

— If you have MS, contact the MS Navigators at 800-344-4867 or contactusnmss@nmss.org. Tell the Navigator your story and ask for ideas and resources. The Navigators are trained in research and all things MS.

— Off-topic but still important: Mobility problems often go hand-in-hand with social isolation. If you are feeling alone and looking for friends and support, look to online communities like MS Connections on The Mighty (themighty.com/groups/multiplesclerosisconnections), the MS Society community group on Facebook (facebook.com/groups/nationalmssocietycommunity), MS World (msworld.org/forum), or sign up to speak to others with MS at the MS Friends program (800-344-4867 or contactusnmss@nmss.org). Hang in there, because there's community out here waiting to hear from you.

— If you have #ALS, the ALS Foundation has a durable medical equipment loan program that offers assistive items like wheelchairs, shower chairs and cushions. “We have never had to turn away anyone with ALS for any requested DME. They can come down to our chapter, and we work with a nurse or ATP to [properly fit them],” Amy Sugimodo of the Sacramento Chapter ALS Association told New Mobility. See als.org.

— The Triumph Foundation is based in Southern California but assists people with spinal cord injuries across the nation. Affiliated with United Spinal, Move United, and the Los Angeles Paralympic Sport Club, the organization takes in, services and distributes donated equipment in California, but also matches equipment for people in other states — and even gives grants for fresh batteries for power chairs. More info at triumph-foundation.org.

If you know of any others, or have more info about what's listed here, please contact me to update when I repost this next. For questions and comments, message @themightyjohn or email wheelieoutthere@gmail.com. 

A Brush With Greatness: A Farewell to Brooke Ellison

The best part of what I do is all of the diverse people I get to meet. Everyone I meet is better than me in something or another, and has something to teach me. This month I met a great one who taught me a lot.

A few weeks ago we lost Brooke Ellison, 45, a disability advocate who was a professor at Stony Brook University and VP of technology and innovation for United Spinal Association. She led an extraordinary life and I encourage you to watch this “TODAY” show profile. Along with her prominent career, she wrote a couple of books, one of which was made into a movie by Christopher Reeve; ran for the New York State Senate; and was a professional speaker and one of the first quadriplegics to graduate from Harvard University — all after being hit by a car and paralyzed from the neck down at age 11. Here is Brooke Ellison’s TED Talk: The Pillars of Hope.

Ellison and her mother, Jean, who aided her throughout the undergrad years.

I had the honor of speaking to her just before she passed. We talked for an interview on a few tech-related accessibility topics, subjects she had been working on her whole life. We had difficulty scheduling it, but I knew she was a busy person and I’m not reading anything more into it. However, once we finally got down to it, she poured out the information. In her mind was coiled a nonstop string of knowledge that unspooled into my ears. My mouthstick was throwing sparks trying to keep up on my keyboard. This is why I record interviews. It’s not just to get the quotes right — it is being able to unravel all of the points and concepts skipping past my baby-smooth brain. Tape, don’t fail me now!

Birds of a feather.

We gabbed almost 17 minutes, transferring a ton of info and sharing a few laughs. That was the best thing, that we shared a genuine rapport. We both had high-level disabilities, and I could tell she appreciated my questions that could only come from someone actually living the life. I was truly gleeful, not only to have gleaned from her exactly the info I needed to cap off my story, but also to have had a real conversation with such an authority on things that make my and many other’s lives much better.

One thing we really got into was the MouthPad, a revolutionary new device that is worn like a retainer in the mouth, to control computers, phones and other Bluetooth devices. It is a touchpad for your tongue that is worn on the palate of the mouth.

MouthPad.

The MouthPad will have uses for people from all walks of life, but in the testing phases the developer, San Francisco-based Augmental, has included many people with disabilities, including Ellison. She was the perfect person to speak to on the MouthPad too, because for years she used a forerunner of the MouthPad called the Tongue Touch Keypad.

TTK.

Developed some 15 years ago, the TTK was also worn in the mouth and had buttons like a remote control that could be pressed by tongue. Ellison used it to control her wheelchair, lights and environmental controls. However, the developer went out of business in 2011 and the aging device was “on its last legs,” she said. With time, the infrared TTK grew more and more out-of-date in a Bluetooth-heavy era.

“I felt in a lot of ways that technology was kind of passing [me] by,” she said. “My cell phone was basically like a paperweight.” How I could relate to that last comment! When I finally found a cell device I could use, it was 2022. I felt like Rip Van Cellphone.

Ellison was very excited about the MouthPad, which she thought will dramatically expand disability access across many different areas in society. “The promise is so much greater and the company that developed this technology is thinking much more broadly than the TTK ever did. … I’m really excited to see how this technology is going to continue to be integrated into many different aspects of our lives. I don’t think the limit is going to be computers (or) handheld devices,” she said. “I’m really excited to see how everything unfolds.” Ellison contributed for years on the development of the MouthPad with Augmental, and finally got a device of her own only a week before our interview. No wonder she was excited. With her unique history, she could experience the progress that’s been made on the tip of her tongue.

Two days later came word from my editor that she had passed. He and I and the entire United Spinal community were shocked. If she was ailing in some way when I talked to her, I had no idea and she gave no indication. I felt sad all day long that I didn’t get to know her better, and a lot of sympathy for those lucky enough to know her. But looking back, I’m grateful she granted me that opportunity to talk together. It was a brush with greatness. It's natural, then, to dedicate my story to Brooke. It will appear in New Mobility magazine this summer.