What happens to my pALS if something happens to me?

kljack16

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Hi - as we are navigating this disease and its progression, I’m starting to worry about how does my husband get help if something happens to me.

Last night, he slid to the floor as we tried to get him into bed (his upper body has almost no function, but his legs have been fairly strong). I couldn’t get him up this time. As he lay sleeping on the floor (he didn’t want me to call for help yet), and I lay in bed stressing …. I started to wonder if I died in my sleep (morbid I know, but … even if I just became incapacitated) … how would he get help? How would anyone know he needed help?

We are fairly isolated where we are. We are moving to Houston, TX to be closer to medical care and friends and family, but between now and then … is there something y’all recommend?

We don’t have Alexa or any of those things because of the security issues with them … is that our only option though? What happens when his voice goes ….

I’m sure I’m not alone in these concerns … please let me know what y’all have found helpful. If Alexa is our best option, we will do it. I just want him to be safe.

Thank you!
 

Nikki J

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Alexa etc can be very helpful for all kinds of things if the PALS has a voice but as far as summoning help you could do that from a smart phone. If he wouldn’t have a phone always in range pair it with a smart watch. I have a iphone/ apple watch and with both the phone and watch can initiate calls voice only I say hey siri. Call x.

my county sheriff has a program where you can sign up for daily check in calls. I think if you don’t have that there are online programs too. Or a friend or family member could do this. Obviously this is back up for an immediate summoning of help because you could go 23 hours 59 minutes before anyone had an inkling there was a problem
 

MToole

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There are emergency alert systems that can detect when a person falls and automatically calls for help.
 

rmt

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The VA set us up with Silent Beacon so my husband could get help even though he can't talk anymore. It is just a button he has to press (his hands are currently OK) and it will call the emergency contact and 911. I'm sure there are other similar systems out there that are voice activated.
 

MToole

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Lifeline is an example of a fall detection system. <commercial link removed>
 
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kljack16

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Starkville
Thank you for all the responses. They are so helpful!!!

I think the Alexa type thing/AppleWatch might be our only real option - as long as he has his voice. I don’t leave him alone for more than an hour ever, and he’s not mobile without assistance; so it’s really just those possibilities of me not being able to get back to him.

I like the county sheriff checkin - where we are moving, there’s a concierge. I’ll just keep them aware of my comings and goings so they know he’s by himself - in case I’m not back in a reasonable amount of time.
 

lgelb

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While he has his voice, Siri can work (make a call, check email, etc.) with his phone without an Apple watch or Alexa, if you mount it near/to his bed and keep it charged. Settings you turn on would be "Listen for 'Hey Siri'," Allow Siri When Locked."
 
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wmilo

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It doesn't provide "smart" function, but we've been using a nursery monitor with good results. The nursery end is in my room and my CALS can easily hear me, and speak to me if desired. She can also carry the other unit with her if she will be in the garage, for example.
 

BarrCarr

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We have Google home mini's throughout our house. I can talk to my wife across the house, make calls, turn out lights, etc. If you have heard Amazon and Alexa have rolled out Sidewalk and it now has radio signal capability. YouTube Search and hear what people are saying.
 

lgelb

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The scenario we started with was the CALS being incapacitated and the PALS unable to move. For that, a voice-activated phone should do it if the PALS can speak, or even if they can only dial, there could be a prearrangement with the person(s) they call, including 911 with prior notice. But if the object is to rouse the CALS, there are many switch-operated alarm buttons, monitor pairs, and home speakers as described.
 

MToole

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When you decide what direction to go, please share your decision and experience here so we can all learn from it.
Thanks, Matt
 

Nikki J

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I do think there are ( fortunately) a number of tech options but also make people aware. It is worth contacting emergency services and letting them know Anyone with an impaired voice should consider getting that on file too. It shouldn’t happen in a perfect world but if you sound drunk / impaired you don’t want to risk delay or hang up
 
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