This is a cruel disease

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lgg

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Joined
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Messages
22
Reason
CALS
Diagnosis
11/2017
Country
US
State
TX
City
San Antonio
It's taken the better part of a year for my PALS to get his wheelchair to feel good. Before he could only sit in it for 30-60 minutes before getting very uncomfortable. It finally has been fixed. It has taken about the same time to make our house a smart home, meaning lights, shades, doors and TV can be operated by voice commands. PALS cannot use his arms or legs, but thankfully he can speak and swallow. That is why these adjustments were so important. He used to read a book a day and was also able to start reading on his iPad again. All of this is good news, but his breathing is deteriorating to the point where he has to wear his bi-pap mask almost all the time. What I'm saying is now that we have all systems up and working, he can hardly use anything because of the mask he needs to breathe. I just want to make his life easier and it just isn't. As I said this is a cruel disease. Thanks for letting me vent.
 

lgelb

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Vent any time!

I do not see why he couldn't use voice commands with a nasal mask? What kind of mask does he use?
 

Kbush

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My pals uses voice commands through his computer to operate all of those things. It works great as he cannot speak at all.
 

JimInVA

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My wife used her BiPAP 24 hours a day. She used a nasal pillow during the day and a full face at night. With the nasal pillow, she was able to use her voice to control the computer for several years. Only after her voice weakened, did she need to move to eyegaze to continue use of her computer. I hope you can find that which works for your PALS.

My best...

Jim
 

lgg

Member
Joined
Mar 19, 2020
Messages
22
Reason
CALS
Diagnosis
11/2017
Country
US
State
TX
City
San Antonio
It covers his mouth and nose. Are there other kinds?
 

lgg

Member
Joined
Mar 19, 2020
Messages
22
Reason
CALS
Diagnosis
11/2017
Country
US
State
TX
City
San Antonio
Dear Jim, I will definitely look into it. Thank you. Leslie
 

JimInVA

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20201005_113004.jpg
 

nona

Distinguished member
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Joined
Oct 1, 2018
Messages
469
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON

VovoKate

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Dec 22, 2020
Messages
3
Reason
PALS
Diagnosis
12/2020
Country
US
State
GA
City
Dublin
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