Assistance TechnologyDevice Wishlist

[caregiverals]

Hello all - My name is Sarah and I was a CALS for my husband for 4 years. His journey with ALS ended 10 months ago. He used to work at the engineering school of our local university, and this year's senior class would like to work on a legacy project for assistive technology/devices for PALS and CALS. They are involving me as a consultant and I'm going to be tapping all my experiences and resources for them. I'll be talking to students to get the project started this week.

I'm here to ask PALS and CALS, what's your wishlist? They're biomechanical engineering students so they will be interested in biomechanics and medical equipment related to the body. Maybe a specific type of neck brace or moveable limb brace, something that can help with range of motion, an improved type of bed or air mattress that can't be found yet, devices that can help with more non-verbal communication, safer mobility devices/lifts, etc.. I may have access to computer science engineers as well.

I just want to get an idea of where the need is highest and I can add them to my short list. Thank you!

 

[lgelb]

The first thing that popped into my head, Sarah, and endorsed by our son, who was my fellow caregiver, was a cheaper method of taking a shower over a longer period of time, since most homes don't have a zero entry shower. So, as you know, often P/CALS buy something expensive like the ShowerBuddy (a track/chair combination for a traditional shower stall), or renovate. But renters can't renovate, and many homes can't support that kind of renovation due to lack of space, time, or funds.

Even in a setting in which a shower chair can be used, typically a weakening torso makes a shower chair inadequate support at some point, and the person has to give up showers. So many people consider chairs that tilt, but that adds depth. There are freestanding stall kits and wet rooms, with many of the same caveats as above, plus concerns about flooding, plumbing, and permits.

That's the problem statement. Off the top, and I am not an engineer, I envision some kind of caterpillar-like chair or cradle where segments can be "opened" to permit cleaning, then closed in favor of the next segment, to reduce total length/width and permit some level of tilt. Having less "length" at one time might also improve overall support, as would a more molded back.

To avoid the "crossing a threshold" problem, maybe it folds out from a shower wall or door mount (though as I am typing this, the weight involved makes that idea pretty crazy) , and somehow pivots outside the stall enough to accommodate a Hoyer. Maybe it mounts to the threshold rim, or in a room with a tub shower, to the tub wall.

Well, you get the idea. I think there are more "bath lift" concepts in use in Europe, and some of those are ceiling-mounted, so those might be worth looking at. But running water is much more hygienic for a PALS.

Thank you for the opportunity to comment and for spearheading the project. I'm sorry to hear about your husband but can imagine how happy he would be to see this living legacy. Please extend our collective thanks to the students for their efforts as well.

Best,
Laurie

 

[caregiverals]

Thanks Laurie - In 2020 I ended up building our own packable shower to use in our kitchen, and it was showerbuddy wheelchair friendly because my husband did need a recline as well.
View: https://youtu.be/kcaDODFJ_cc?si=D0T6wGEVgWEXlaPZ

 

[MupstateNY]

what do you suggest if a tilt is needed?

 

[lgelb]

A tilt chair can work if your shower space is big enough. Or you can kludge something, even a lawn chair mod, that fits with tilt, if you have enough caregivers to keep you in it and do the shower at the same time.

Some people find a sling-based solution, if there's room for the lift in the bathroom.

 

[oldgeek]

Hi there. I had a need but solved it . But, I'd be happy to share. Here's the details.

I have a trach and on a vent which I carry on my new power chair. With the trach tube in my throat, I find it hard to turn my head and see behind me.

The ventilator tray attached on the back of the chair sticks out pretty far and so I found I was hitting things backing up.

I asked my wheelchair company about proximity sensors and they are expensive: $3000 - $5000

So, being a retired geek, I built my own. It is comprised of a $5.99 microcontroller that has bluetooth low energy and so it can be powered by the small phone charger attached to my chair. To the controller, I attached three ultrasonic distance measuring "eyes" at $1.49/ea.

I wrote a small program (that I'd be delighted to share) that will take the measurements from the "eyes" every half second or so, and send them over bluetooth to my android phone. I wrote another program for my android phone (I can share) that will take the readings and if any of the three are under a distance threshold I set, it will send tones to my bluetooth hearing aids or bluetooth speaker. Each "eye" has a different tone so I know which sensor is sending - and the closer I get to the object - the faster the tones beep until it plays a solid tone under the MIN threshold - telling me to STOP!

One sensor is mounted straight back, and the other two at 45 degree angles left and right. Here's a couple of short videos: link (Proxity Sensor )

I have used this for several trips and find it incredibly useful; particularly getting out of tight elevators; but even just navigating around things at home with my "wide swing" with the vent tray sticking out of the back is easier.

I know this must be a common problem - at least for those of us in a power chair with a vent and for less than $20 - the solution is cheap.

I had to solder the parts together, but they could use a pre-printed circuit board that is easy to source now for quantities of just four or five.

If your team wants more details, let me know. Great idea by the way.

 

[Jimi]

I want a mini eye gaze cam to attach to an android phone and software to allow complete control

 

[Tokyo Tengu]

I have limb onset ALS, but the first symptoms to manifest when things started going bad was jaw weakness. I simply have no jaw power for chewing. I still swallow pretty well, but the only way I can chew currently is to put my chin in the palm of my hand, put my elbow on the table, and rock my head up/down to replicate chewing motions.

It occurs to me that a wearable head device with reciprocating pistons on each side of my head and a chin cup to hold my jaw might work to simulate chewing actions.

 

[Tokyo Tengu]

I had in mind a vertical roller device like you see in a car wash that could be installed in a shower so a person without hand/arm strength could lean into it and scrub his/her body unassisted. I can get in and out of the shower, and I can even turn the water on/off, but other than rinsing, I can't do much. My arms just hang off my shoulders and refuse to lift any higher than my waist.

 

[Gizzmo]

I know exactly what you mean about your arms my husband has the exact same thing. His arms moves just to his waist would be nice to have something like that . Finding a way to eat would be great to get his arms and hand up to his mouth also.

 

[Doing My Best]

Gizzmo, for eating when you can't use your arms there is a robotic device called an Obi that is fantastic. My husband used it successfully for over a year before going to a PEG tube due to swallowing problems. You can google the name and see the manufacturer's website. It's very expensive, but luckily we were able to borrow one from our ALS Association's loaner closet. Probably my PALS' favorite assistive device.