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Since the point where my husband, Todd, needed a wheelchair because of his <a href="https://alsnewstoday.com/what-is-als/">ALS</a> progression, he&#8217;s had to navigate a less than perfectly accessible world.
Todd is particularly challenged in our old community, which was built up long before the passage of the <a href="https://www.ada.gov/topics/intro-to-ada/">Americans with Disabilities Act</a> in 1990, with its accessibility requirements for public businesses. <a href="https://www.ada.gov/resources/title-iii-primer/">Accessible design elements</a> have since been incorporated into the construction of buildings, but many of our businesses operate out of early 20th century buildings, which have been grandfathered into a perpetual state of inaccessibility, with steps to get inside or inadequate seating.
Todd is <a href="https://alsnewstoday.com/columns/challenge-finding-fun-family-activities-als-progresses/">homebound now</a>, but when he could get out, his activities were limited to the buildings he could access. He could attend school events for our <a href="https://alsnewstoday.com/columns/parenting-children-rare-diseases-family-support/">kids</a> because the schools were built after the ADA passed. But when our daughter once had a violin recital in the old two-story building where I&#8217;d attended elementary school, he could only listen from the front foyer because the structure was never retrofitted with an elevator.
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Another time, our daughter was in play at a historic theater that had opened in 1900. The old auditorium&#8217;s aisles are too narrow and steep for a power wheelchair, but at some point a few seats in the back row were removed and a platform added. Todd had parked his chair there while I sat on a folding chair next to him. But when we returned for the play, a sound booth was in that spot, leaving Todd to park against the back wall. Fortunately, he has an elevate function on his wheelchair, so he could rise enough to see above the heads in front of us. I stood next to him.
We were delighted when there was a performance at a modern theater on our local university’s campus. There’s plenty of room for wheelchairs, with companion seats next to them.
<h3>Other kinds of challenges</h3>
Our local university also has accessible rink-side seating in its hockey arena, but when we started attending games, it was general admission. For one game, I purchased a wheelchair ticket for Todd and three companion seats for me and the kids. That hockey game was well attended because we were playing our rivals from a neighboring university, and other people in wheelchairs had filled all but one spot — and that was blocked by a videographer for a local television station. The man ignored our request to move his tripod down 3 feet, so I talked to someone in the box office. A manager arrived and persuaded the videographer to move over. The manager was apologetic and gave us free popcorn. The next time we attended a game, numbers had been added to the companion seats and open wheelchair spots so we could reserve the specific spaces.
It felt good to have a win.
Todd also had an accessibility win when he got a national chain restaurant to add a ramp between its parking lot and sidewalk. For years, Todd went out with his buddies every Thursday night, but it was difficult to get into the building because the asphalt parking area was a few inches below the sidewalk&#8217;s elevation. He couldn&#8217;t smoothly transition between the surfaces and would be jostled. But the real problem was leaving, when his chair would tip forward driving off the sidewalk. Todd had to back off of it for his safety.
He complained to the manager a few times over a couple years, and the manager assured him that he&#8217;d escalated the complaint, but no action was taken until Todd found a form on the corporate website and described the problem. They must have contacted the franchise owner, because a month later the problem was fixed.
<figure id="attachment_89829" aria-describedby="caption-attachment-89829" style="width: 671px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-89829" src="https://alsnewstoday.com/wp-content/uploads/2024/02/Joyful-Sorrow-Sidewalk-Fix.jpg" alt="Two pictures are divided by a diagonal line. On the left, under the word &quot;Before&quot; in red type, we see what appears to be concrete in the foreground, with a gap of a few inches before it resumes. on the right, under the word &quot;After&quot; in red type, we see dark gray rectangular stones butting up to dirty white or light tan stones, all on the same plane." width="671" height="322" data-wp-pid="89829" /><figcaption id="caption-attachment-89829" class="wp-caption-text">Before and after the sidewalk was fixed. (Graphic by Todd Neva; photos courtesy of Kristin Neva)</figcaption></figure>
It was an incremental improvement in a world that’s been progressively difficult for Todd to access.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

We celebrate small wins for wheelchair accessibility with ALS

When <a href="https://alsnewstoday.com/what-is-als/">ALS</a> first caused my husband, Todd, to need a wheelchair, he realized he couldn’t recline too far in it or he&#8217;d get stuck there; his arms were too weak to reach the joystick or seat-control buttons. To compensate, his durable medical equipment technician added an egg switch to the rear of the footrest, so Todd could slip his heel back to return to a seated position. After he lost all use of his legs, the technician removed the egg switch.
Todd later lost all use of his arms, too, so he began using a head array to drive and change his seating position. When he wants to recline to nap or relieve pressure on his bottom, he has to avoid going back too far or he’ll get stuck there with his head pinned against one of the buttons. Or his cheek might accidentally hit the head array’s egg switch, and he&#8217;d be unable to lift his head off the proximity sensors to reactivate the control.
With all the technology now available, we thought there&#8217;d be a solution, such as using an <a href="https://www.youtube.com/watch?v=Zie_EMU6LnI">Alexa-compatible device</a> so Todd could give his chair voice commands. Unfortunately, our durable equipment provider no longer has a technician to service our area, and it’s not practical for us to travel four hours to an ALS clinic.
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I explained our dilemma to a Facebook ALS group, where someone suggested I reach out to the <a href="https://gleason.wsu.edu/adaptive-technology/">Adaptive Technology Center</a> at the Steve Gleason Institute for Neuroscience at Washington State University. The center’s staff is familiar with technology available through durable medical supply companies that could be covered by Medicare or other insurance plans. They also keep abreast of off-the-shelf solutions and have many items that people can try without having to purchase them.
<h3>A guide through the technology landscape</h3>
The center offers tours for those who can get to Spokane, Washington, but that isn’t possible for us in Michigan. Instead, I set up a <a href="https://alsnewstoday.com/columns/being-vulnerable-grief-als-healing-sharing-opens-hearts/">Zoom meeting</a>, where we connected with staff member Victoria Perkins and explained our situation. She asked questions about <a href="https://www.youtube.com/watch?v=lCFNl7GXivw">Todd’s specific wheelchair</a>, so I crawled around the base of it with the web camera, showing her where cables were plugged in and which ports were available.
“Oh, that looks just like my son’s chair,” Victoria said. “Try U2.”
I tried plugging in an old egg switch into that jack, but nothing happened.
“Try U1. That’s where I plugged a switch into my son’s chair.”
I tried that jack, but it only replicated the cheek switch, which wasn&#8217;t helpful.
Then Todd vaguely remembered that the technician had removed and unplugged his heel switch from the bottom right of the chair. Bingo! I found open ports labeled M1, M2, and M3, each corresponding to his preset positions. I plugged the egg switch into different ports until we found one that returned Todd to a position where he could regain control of his head array.
But we still had a dilemma — how was Todd to activate a switch?
He still has his voice, limited head movement, and the ability to twitch his left ring finger. Given that, Victoria reviewed a number of options with us, including the benefits and drawbacks that Todd might face.
The <a href="https://enablingdevices.com/product/ultimate-switch/">Ultimate Ball End Wobble Switch</a> from Enabling Devices could be activated with the slightest touch; it could work if placed next to Todd’s head. The <a href="https://enablingdevices.com/product/36-easy-flex-sip-puff-switch/">36-Inch Easy Flex Sip and Puff Switch</a> from the same company could work for Todd because he still has the ability to use a straw, but I would need to position it pretty much in his lips because he can&#8217;t move his head to reach it once reclined. As far as voice-controlled options, she pointed us to the <a href="https://us.switch-bot.com/products/switchbot-bot?utm_source=google&amp;amp;utm_medium=cpc&amp;amp;utm_campaign=VV_Search_Brand_US_220129&amp;amp;gclid=Cj0KCQjwj5mpBhDJARIsAOVjBdqIlForIyW84ge4IoGQkV_lt_1DHNcAP9K_OoUPa1xInxSmU5hO4U4aAla3EALw_wcB">SwitchBot</a>, but we might have trouble rigging it up to press, hold, and release as would be required to change the seat position.
The winning solution might be the <a href="https://glassouse.com/product/finger-switch-glassouse-assistive-device-accessory-hands-free/">Finger Switch</a> from GlassOuse. It could be attached with Velcro to Todd’s ring finger, and it requires only light pressure.
After the meeting, Todd said, “When she mentioned her son, I realized we were dealing with somebody who really knows what she was talking about. She’s tried it and hasn’t just read about the technology.”
I was impressed by Victoria’s technical knowledge of wheelchairs, since she&#8217;d learned the ins and outs of her son’s. I&#8217;m not a naturally tech-savvy person, and I hadn’t learned more than the basics of taking Todd’s head array on and off. But now that we don’t have access to a wheelchair tech, it’s time for me to learn.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: wheelchair

We celebrate small wins for wheelchair accessibility with ALS

As we try out new wheelchair technology, I have much to learn