comforting a loved one with bulbar

blonde

New member
Joined
May 11, 2020
Messages
1
Reason
Loved one DX
Diagnosis
9/2018
Country
US
State
CA
City
los angeles
Hi!
My loved one is in late stages of Bulbar, and can not communicate. I am curious what sort of comforts I can offer him. He still has some leg mobility and is not bed ridden. I have tried hugs and gentle leg massage. Please, if you have any words of wisdom :)
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
563
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
I also cannot speak, I have an IPad that can speak for me. My wife can understand most of what I am trying to say.
Al
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,242
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
What are his capabilities, Blonde? Can he move his head, use any kind of mouse, button, or switch, even twitch a muscle in his cheek? There are many text to speech options as Al mentions.
 

jb64

New member
Joined
Apr 30, 2020
Messages
1
Reason
CALS
Diagnosis
12/2019
Country
US
State
MN
City
Plymouth
My mother is also in the late stages of bulbar. She communicates with a wonderful tool called a boogie board. Also, we try and ask her yes or no questions as she can nod/shake her head to answer us. She tells us children, with her voice, that she loves us daily. While to most its almost unintelligible, we know what she is saying and cherish it.
 

wmilo

Active member
Joined
Feb 14, 2018
Messages
64
Reason
PALS
Diagnosis
10/2017
Country
US
State
PA
City
Zelienople
She tells us children, with her voice, that she loves us daily. While to most its almost unintelligible, we know what she is saying and cherish it.
jb, I don't know if it is considered poor form for PALS to post in a CALS forum, but hearing about the love shared with your mother and her children really lifted me up.

Thanks,
Bill
 

Naturelover

New member
Joined
Jan 7, 2020
Messages
3
Reason
CALS
Diagnosis
11/2018
Country
US
State
WA
City
Bellevue
My stepdaughter has bulbar and in late stages. She has been communicating with a tobii device, using eye gaze, since October, when she could no longer write. Medicare pays for this. It takes patience on the CALS part, to make sure you give her the time to say what she wants to say, to not look over her shoulder or finish her sentences for her. We also use eye blink for lots of yes/no questions. It is a godsend.
 

PrimaVera

New member
Joined
Apr 23, 2020
Messages
3
Reason
PALS
Diagnosis
03/2020
Country
US
State
CT
City
Shelton
Hi, I am a PALS with Bulbar symptoms. My son downloaded “Text to Speech” to my iPad; it is quite effective. He also bought me a Blue Tooth connected iPad keyboard; I keep them together in the nice carrying case.

Text to Speech is a free program, but I paid the $4.99 to remove the annoying pop up adds. If your family member still has good hand control, they can type in what they want to say, then press the arrow to make is speak. I am surprised at how good the program is... I also have a communication board from the VA to speak for me, but this is so much easier to take with me.

You can choose a ”voice” that sounds the most like you (there are a variety of male and female voices), and you can also adjust how fast it speaks for you. Any computer savvy family member can show you how to set it up and use it. I use it a lot as talking is very difficult, most people can’t understand me anyway, and my husband is hard of hearing, so communication is challenging. It even works well when I am on the phone. You can save commonly used phrases, too, so you do not have to type them in each time you want to speak. I saved a comment to the effect of “I use a computer voice to speak for me. Please give me time to answer you...”

Hope this helps,
Vera
 

old dog

Distinguished member
Joined
Aug 27, 2011
Messages
248
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
OR
City
Scio
Vera - This is very similar to the program I use. I use a Chromebook rather than an I-pad. I chose it for the longer battery life and larger screen, as I use it for other things.
 
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