tamilard
Active member
- Joined
- Apr 10, 2023
- Messages
- 40
- Reason
- PALS
- Diagnosis
- 07/2019
- Country
- CA
- State
- AB
Hello everyone,
I originally posted this info dump to reddit an hour ago so there might be some overlap in what I've shared on here already.
I'm in my 20s, living in Canada, and have ALS. For all intents and purposes, I would be considered paralyzed, since I can't move or walk on my own, and have very limited use of my forearm and hand.
I also have severe difficulties with speaking/being understood and communicate mainly using TTS on an eyegaze tablet or clicking an on screen keyboard on my laptop with a mouse. My main caregiver is my mother, in her late 60s. We live at home. We occasionally get help from my dad and will be getting more homecare in in a little while.
Lately I've become very anxious that I'll end in an emergency situation where I'm stuck without communication tools, namely in the middle of the night, early morning, bathroom breaks or any other time like that, and my caregiver is injured, unconscious, or otherwise indisposed... No one regularly checks up on us either.
Since I can't exactly go grab a phone from anywhere, I was thinking for my own peace of mind to get some sort of medical alert system, like a bracelet I can press or something. I can only reach anything that's in my lap now, so I'd need a long lanyard if it hangs around my neck. I've looked at some sites but it's all a bit overwhelming.
I can, with difficulty, use our home phone handset, but I only ever have that on me if my mom runs out for a few minutes and I'm in bed or at my desk alone. I don't exactly want to sleep with it on my lap. I'm also trying to see what exactly I can do with my eyegaze screen and maybe Google home for phone communication. I found out I can text emergency services through my screen, so trying to get that set up as well.
Any sort of suggestions are very welcome.
tldr: am severely disabled, need a contingency plan if my caregiver is incapacitated and I can't use my communication tools.
I originally posted this info dump to reddit an hour ago so there might be some overlap in what I've shared on here already.
I'm in my 20s, living in Canada, and have ALS. For all intents and purposes, I would be considered paralyzed, since I can't move or walk on my own, and have very limited use of my forearm and hand.
I also have severe difficulties with speaking/being understood and communicate mainly using TTS on an eyegaze tablet or clicking an on screen keyboard on my laptop with a mouse. My main caregiver is my mother, in her late 60s. We live at home. We occasionally get help from my dad and will be getting more homecare in in a little while.
Lately I've become very anxious that I'll end in an emergency situation where I'm stuck without communication tools, namely in the middle of the night, early morning, bathroom breaks or any other time like that, and my caregiver is injured, unconscious, or otherwise indisposed... No one regularly checks up on us either.
Since I can't exactly go grab a phone from anywhere, I was thinking for my own peace of mind to get some sort of medical alert system, like a bracelet I can press or something. I can only reach anything that's in my lap now, so I'd need a long lanyard if it hangs around my neck. I've looked at some sites but it's all a bit overwhelming.
I can, with difficulty, use our home phone handset, but I only ever have that on me if my mom runs out for a few minutes and I'm in bed or at my desk alone. I don't exactly want to sleep with it on my lap. I'm also trying to see what exactly I can do with my eyegaze screen and maybe Google home for phone communication. I found out I can text emergency services through my screen, so trying to get that set up as well.
Any sort of suggestions are very welcome.
tldr: am severely disabled, need a contingency plan if my caregiver is incapacitated and I can't use my communication tools.
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