Need any ideas gadgets etc

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steeil

New member
Joined
Jul 23, 2015
Messages
3
Reason
CALS
Diagnosis
07/2014
Country
US
State
CA
City
Auburn
Hi, my mom has had ALS for a year now. She can no longer use her hands and her legs are days away from being unable to stand even to get up off the chair. Unfortunately not getting much help here in CA from the ALS clinic so feel all alone trying to help her. Need any ideas on things ALS patients can do without any use of arms/hands. She can no longer feed herself but can speak and swallow. Has to be in a chair 24/7 as she has cancer in her back and can not lay down on a bed. Any assistance on care giving etc would be welcomed. She's on a bypap machine 24/7 for breathing. thanks!
 
First, I'm sorry for your situation. Your mom is lucky to have you helping her.

She can use voice recognition (Dragon software) to operate a laptop on a portable table in front of her, or use an iPad or whatever other tablet she prefers. Using one of those, she can type letters, memoirs, anything, using a virtual keyboard (easier to do on the laptop than tablet), browse the Web, send e-mail, read e-books, listen to audiobooks, listen to music, watch movies/TV/college lectures, whatever she enjoys. She can also "chat" with people anywhere in the world via audio or video, thereby keeping in touch with friends and family, not just seeing their faces but they can take their phone or tablet around and show her things wherever they are. Those are a few things that come to mind. What devices do you have for her to work with, or would you think of getting? Of course, she will need to use a nasal mask if she wants to use her voice to control anything.

Other possibilities are a mouse like the Tetramouse that she can use with her chin/tongue/lips or a SmartNav that she can use with her head, to control a laptop.

If all this seems like too much work for her, if you are going to be with her, you can turn on videos, start a playlist, connect calls, etc. and leave her alone when she does not need you. For most of that, if she is not going to write and you are going to be the "controller," a tablet is fine and gives you more flexibility in positioning, e.g. a floor stand. We used a Levo stand. You can also mount it on the wheelchair or a table.

Do you have a Hoyer lift and know how you are going to do toileting and hygiene? Also, have you worked with an occupational therapist or someone who knows different beds/mattress types to enable her to lie down? Always sitting up, she will be at greater risk for pressure ulcers and it is just harder. You would never transfer her to a flat bed, of course; it can be positioned so she might be comfortable enough to use it. Does she have a Roho cushion and back on the chair? What kind of bed/mattress did you try?

Anyway, welcome to our corner of the world; we will support you however we collectively can.

--Laurie
 
>Anyway, welcome to our corner of the world; we will support you however we collectively can

Ditto that!
 
Unfortunately not getting much help here in CA from the ALS clinic so feel all alone trying to help her.​

I think we're at the same clinic (noticed you are in Auburn) and we had the same experience--but you aren't alone now that you're here! Laurie has already given you great advice and others will share what's working for them, too. My husband has bulbar onset so his progression is quite different from your mom's.

One thing I would recommend with that clinic is reading here and doing some of your own research and then going with a list of questions and requests all written out. Then do not let staff dismiss you until all of them are answered. And follow up. We have found the newer doc there quite responsive, but had had such a bad experience we'd already moved to the above MO before we ever got to see her.

Best wishes. So glad you've made your way to this forum. It has been a lifeline for us!
 
thanks, yes we are in Auburn and feel very much alone. Unfortunately my mom can no longer use hands, fingers etc. She is days away from not being able to use the tv remote. She wears the bypap 24/7 now. Who is the new doctor? I have a call into a generic ALS number for help since we are not getting any in Sacramento and she can no longer be transported to see anyone. Unfortunately also she has cancer in her back so she can not lie down so she is confined to the chair. Has anyone used a female urinal as I found someone wrote that helped in less transfers? I feel my dad and I are "trying" to re-invent the wheel since the help I thought was there hasn't been
 
Yesterday I called the ALS foundation main number. I just received a wonderful call from someone to help. She's connecting me with the ALS chapter (NOT clinic) in Sacramento for help. She gave me some great ideas and said every day new technology is developed to help ALS patient enjoy life not be unable to do things, so I am hopeful that I've come across some help in addition to the 3 people that also took the time to respond, which I really appreciate!
 
Yesterday I called the ALS foundation main number. I just received a wonderful call from someone to help. She's connecting me with the ALS chapter (NOT clinic) in Sacramento for help. She gave me some great ideas and said every day new technology is developed to help ALS patient enjoy life not be unable to do things, so I am hopeful that I've come across some help in addition to the 3 people that also took the time to respond, which I really appreciate!

I was just going to suggest the local ALS association, they are awesome in AZ.

Sherry
 
Sherry is correct, they are AWESOME here in AZ

Doug
 
i know when the time comes and i can't move at all on my own. i will be in a bed rest the time i have left. they ant going to set me up with anything to move me around with and jane ant going to afford it.
 
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