PALS has lost function in arms only - need ideas

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2023sm

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Joined
Jan 16, 2023
Messages
4
Reason
CALS
Diagnosis
01/2023
Country
US
State
MA
Hi there - my PALS has progressed quickly in both arms but very slowly elsewhere. Docs think it might be brachial amyotrophic diplegia which is a sub variant of ALS. Does anyone have experience caring for someone with no arm function but otherwise is pretty strong? I am looking for some solutions that will help her feel more independent in her daily routine. It’s very frustrating to her that she can walk around normally but she needs a lot of help with anything that requires her to use her hands (so most tasks). Anything that you have found gadget wise or little swaps to help her do things on her own I think will really help her mentally right now. I guess it would have to be something she can control with her legs, feet, or head? Thank you in advance!
 
Jimi from these Forums recommended my PALS and I look into the Eva Facial Mouse Pro app. This is a head tracking app. Jimi is able to type out long messages with it. I downloaded it but got stumped because it seemed to be for the phone and not the computer. I would have to ask Jimi how he has his phone set up to use this app.
Jimi says this app is easier than an eye gaze.

My husband has an eye gaze which he uses fairly well. He searches the Internet and is able to do short emails with it. Insurance will cover this but I am not sure what the criteria are for getting insurance to pay for this. Others here probably know more.

I read the other day that someone is using a little robot to feed themselves meals. I can't remember where I saw this. I will try and remember.
 
The robot is an Obi robot. I think it might be pricey. The MA chapter of ALSA...the ALS Association might have some ideas as to where you could borrow one of these or buy one second hand. I don't know much about them.
 
I went back and looked. Jimi was saying that the Eva Facial Mouse Pro app is for android.
 
Thank you so much Mary, this is great information! I really appreciate your willingness to spend the time to share so much with me, especially since I am so new to all of this. Deepest gratitude
 
Welcome, SM. We will support you however we can.

BAD is kind of an umbrella term, not a specific condition. My husband had the flail arm ALS variant. His legs caught up to his arms fairly quickly beginning in year 2. But everyone is different.

There is a USB foot mouse that is not expensive that can be used for computing. It can be used with a virtual keyboard (built into Mac/Windows and available in more sophisticated apps as well).

Android and iOS both have built-in head tracking she could get started with to see if it's enough or if she wants more functionality. Ability switches attached to interfaces like Tecla can operate mobile devices, and can be switched to new sites as her abilities change. A foot switch can also be used for a night alarm.

Is it that she still has some arm movement, or none at this point? Do you have examples of tasks where you are looking for adaptive solutions?

Best,
Laurie
 
It may be best to move this to the general section so that Jimi can weigh in and help?
 
Hi 2023 SM, this was exactly the onset my husband had. He was diagnosed in Feb. 2020. For the first several months his only severe disability was trouble using his hands or arms (which as you note is quite severe in terms of impact on daily life). There were two things that made a big difference in independence, a feeding robot and voice controls on iPhone and iPad.

Our ALS Association loaned us an Obi, which is an absolute miracle robot that brings food to your mouth. You can find it online at meetobi dot com. Not trying to advertise, but I don't know of anything else like it and it's been a huge benefit to Steve's ability to feel a degree of independence at mealtime. It's expensive but we were lucky our ALSA had some to loan. If yours doesn't maybe you could ask them about it - it would be helpful for most PALS at some point, I think, so if they operate a loaner closet maybe they'd be willing to invest in one. We are about to return ours to ALSA because Steve is now on a feeding tube, but he used it regularly for almost two years, including at restaurants.

The other very important thing was learning to use voice control to operate his phone and iPad. You can call the Apple support line and they'll walk you through it. I am sure Android must have similar features but I'm not familiar with them.

One other thing was that we got a home assistant (Alexa or Google Home type thing) and put speakers in most of our rooms, plus a hub in the kitchen, and got some smart light bulbs, etc. Steve could turn on lights by voice, call from room to room (which became more important as his mobility decreased), play music, make phone calls, etc., using voice commands.

Best of luck navigating all this. It's great you're being so proactive to help your PALS, it'll make a big difference to her quality of life.
 
Agree this post should be moved so others can help. This thread is only for CALS.
 
Under tips tricks GADGETS thread i posted that i bought a medical pole and "third hand ". I got it on Amazon. There is a post on this. The pole raises and lowers. I have the third hand in the photo attached lower on the pole. This may help your PALS hold something?
 

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The pole and third hand are separate products.
 
A bidet toilet seat would be very helpful. You do need an outlet near the toilet. I love mine and haven’t needed tp for five years. Look for ones with remotes. Even if she can’t use the remote, someone else can push buttons.

I second the iPad with voice commands. There are many ways to set it up and hold it to eye level.
 
Yes, Android has "Hey Google" (Google Assistant) which does similar things as "Hey Siri." Mac and Windows both have some built-in voice control functionality as well, the extent depending on the application and operating system.

For dictation, as opposed to voice commands, there are freemium platforms like otter.ai that are easier to dictate long works to than the Mac OS (not sure how good the Windows OS is).

Otter saves the recording and its transcription in one doc, so it's easier to compare the two when the inevitable errors arise.
 
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You should browse the website
Activehands dot com

They review aids for people with hand disability but there may be something there for you.

Contact your local ALS Association and ask for resources.
Also try CCALS.
 
Hi 2023sm,

My husband’s first onset was in his hands and quickly into his arms. Everyone seems to have provided great suggestions to you. What I would add is something my sister and her husband made for us that made a huge difference for us. I couldn’t find anything that worked exactly the way we needed; so they made us the attached.

My husband loves coffee and wine and Diet Coke. Once his arms quit working, he had to rely on my placing a cup exactly perfectly for him to be able to drink without my help. See picture attached - this made a huge difference for as long as he was still able to drink. Now, he’s on PEG only, but for the year plus that we used this, it was a life changer. We used a small Yeti type cup and a long straw with an extended stretch/bendy part to direct it to his mouth. We used it for coffee, drinks with meals, and wine.
6922E947-66AA-4D5D-A48B-5CC30DD6BE9E.jpeg
 
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