Wheelchair options and features for improving life with ALS

“I can’t believe I could’ve had longer footrests this whole time,” my husband, Todd, said this morning as he peered down on his wheelchair while I transferred him using our overhead lift. “I’ve been so nervous about my toes, especially now that I’m having such a hard time driving.”

Todd got his power wheelchair 11 years ago, after ALS had taken his ability to walk. A couple years later, he was outside in his chair and accidentally ran into our lawn tractor, bending the nail of his big toe all the way back. It was extremely painful.

At the time, we didn’t know about longer footrests. Neither Todd’s occupational therapist nor the durable equipment provider, which no longer services our area, mentioned that option when we ordered the chair. However, we knew to request other features, even those not covered by Medicare, and we later determined we needed still others.

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Todd’s chair base, with tilt and recline, was covered by Medicare, but we had to pay out of pocket for the elevate function. That feature helped with assisted transfers for a time, and then became useful for Todd to pull up to a counter-height table to eat and drink from a straw.

We later added an attendant control, and we replaced the plastic backrest with a cloth version, which added out-of-pocket costs. Todd upgraded to soft armrests and added elbow blocks that prevented his arms from falling back when he tilted and reclined, both covered by Medicare because he’d been developing pressure sores. Eventually, after Todd’s arms weakened too much for him to safely use the joystick, he got a head array, again covered by Medicare.

And now his neck is getting too weak to safely drive his chair with a head array.

Moving forward with upgrades

Even though Medicare allows for a wheelchair upgrade every five years, Todd had been hesitant to do it because he didn’t want to incur all of those costs again, and besides, we’d thought that the eye-gaze technology that would allow him to drive the chair wouldn’t allow him to adjust the seat position.

But a couple weeks ago, we learned quite a bit from the new branch manager of the durable equipment provider that now services our area.

Todd had requested service for a replacement battery, and the branch manager showed up with the technician. The manager was surprised by how old Todd’s chair was and asked him about upgrading.

Todd explained his concerns about the add-on expenses and limitations of the eye-gaze technology. “I don’t go anywhere anyway,” he concluded. “I can just have Kristin use the attendant control to drive me from one end of the house to the other, and once I’m parked, it’s more important to control my seat position.”

“Actually,” the branch manager said, “the eye-gaze technology can control the seat. It’s not compatible with your wheelchair, but on the new chairs you can drive and adjust your seat position.” He also said that Medicare now covers the cost of the elevate function. And as for the attendant control, one of the major wheelchair manufactures includes it for free on chairs with all the other options. “And if you want to go with the other manufacturer, we can ask Team Gleason to cover it.”

“Wow, you know your stuff,” I said. He understands how the system works and is even familiar with Team Gleason, a nonprofit that helps provide direct services for people with ALS. “You should get a new chair,” I told Todd. If there’s technology that enables him to be more independent, I want to take advantage of it.

Todd agreed that it was time for him to upgrade, and we then discussed options and features with the branch manager. First Todd settled on a mid-drive chair, and the manager asked Todd about his arm positioning and suggested arm troughs.

“I don’t like how my toes hang over the footrest,” Todd said. “I don’t know why they make them so small.”

The branch manager knelt down and measured Todd’s foot. “You wear a size 9.5 shoe?”

“Yes,” Todd confirmed.

“These are only 8.5-inch footplates,” the manager said. “We can put 11-inch footplates on your new chair. And we can get you toe boxes and gel pads, too.”

“Those would be nice features to have,” Todd said.

“They offered 11-inch footplates back when you got this,” the manager said.

“You gotta be kidding me!” Todd said. “Years of being nervous about injuring a toe, and I could’ve had longer footrests from the start.”

The branch manager began the process that will require a prescription from Todd’s physician and a wheelchair evaluation from his physical therapist, and now we’re now looking forward to getting Todd’s new chair — one that, this time, will be set up right from the start.

Todd reclines in his old chair on our patio. (Courtesy of Kristin Neva)

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