Speech going

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Kim C

Active member
Joined
Jul 31, 2013
Messages
82
Reason
CALS
Diagnosis
07/2013
Country
US
State
KY
City
Nicholasville
How do you cope when your loved one's speech is going fast? My mother's speech is very hard to understand now. I expect by Thanksgiving she may not be speaking at all. How do you cope with never hearing "I love you" again?

we don't have the money to get one of those speech machines. My dad is very hard of hearing and he is having a terrible time communicating with her. This disease is hell on earth.

Kim
 
My speech is weakening and having conversations is very tiring. I am using 'speak it' on my ipad when I have to. It's a app I got for $1.99. Failing that, you could try a boogie board, (Amazon @ $28.00) or white board for communicating, if your Mom's fingers still work. ALS clinics offer other communication devices - please call them. And the loan cupboard may have just the right thing for your Mom.

The loss of speech is frustrating for everyone - when my husband hears " I love you" spoken on speak it! , it's not the same of course. But we have great laughs when " I " nag him in different voices and accents.

I know this is hard - but "I love you" is often spoken with our eyes.
 
My speech is also going but slowly. What did is I bought a iPad and you can install app for speech it's very easy to use and you can choose an app anywhere from a 1.99 all the way to $200.00
 
It's awful now that my mom can't be understood. We have tablets and pens in every room for her. She is too old to use technology - couldn't even get used to the whiteboard! She still naturally tries to talk first, then when I don't understand she will say it louder, then she realizes that she has to write it down. I am very grateful that she is still breathing and walking around - but it is so pitiful that her speech is gone. Just another thing to reduce her dignity and her life. I hate it.
 
That is a hard one to deal with. My husband's speech is going also. He becomes so aggravated because I can't understand him. I've made index cards with the basics on them so we can at least communicate to some degree. Another thing ALS has taken away....
 
Debbie-My mom gets very frustrated and angry when we can't understand too. She has no use of her fingers. In fact, there is nothing, and I mean nothing, that she can do now. Speech is all she has left and it's going too. I hate this horrible disease.
 
Elaine - I wish I knew how to quote your comment about 'i lov u being said with the eyes'. So true and brought tears to my eyes.
Trina
 
my wife and I communicate by me asking questions and her giving a SLIGHT nod of the head.

We have not heard my wife speak in 2 years.
 
I can understand less and less of my PALS speech every single day. Luckily for the most part we laugh about it as I tend to take what I think are reasonable guesses at what he says but they turn out to be wild guesses not even close. But in reality it's frustrating for both of us.

He resists using his iPad app saying it is slower than trying to speak.

Usually when others are here or we are with health professionals I can interpret for him fairly easily as they ask a question and I already know the answer, so when he says something I can interpret or he will just kind of say - you tell them about that or something.

So we cope by trying to laugh at ourselves, but with your mum losing her speech when that is all she had must be so awful for her. I can't imagine what this truly feels like, the cruelty is shocking.

I think that cards and whiteboard type solutions seem like the best, but with you prompting her through them and asking more questions for her to answer rather than her trying to say a whole sentence or concept. You can use cards to start with categories to get the context - personal care, food etc. Our speechie tried to get this concept across to my PALS, to structure his sentences differently and start by stating a context so that people can follow the speech a bit better, but he mostly forgets.

This disease does truly suck.
 
a suggestion i saw on here on an older post is to ask questions that can be answered yes or no. then work out some kind of simple way for her to answer, like looking up for yes and to the side for no. only a suggestion
 
Loss of speech is sooo hard for everyone. When all other options would no longer work we made a simple alphabet board. Set it up so that each vowel is down the left side of the board.
Point at a letter Pals can blink once for yes twice for no. It is slow but some communication is still doable.
We also made a picture board. Just cut pictures out of magazines and paste on a piece of Bristol board. For example a picture of a T V indicates, turn on/off or change volume. I used a picture of a vacuum to indicate the need for suction. Use whatever works for your family.
These lo tech choices are slow but work and take less energy for Pals. Hope this is of some help for you
 
What Elaine said is right and her words also made me tearful. My husband lost the ability to speak about 5 months before he passed, so it was a long time that we hadn't heard him speak. Although one time, about a month before he passed, his speech came back for about 10 minutes. He didn't lose his voice, ever. But strange how the voices or accents using Speak It on an iPad can suffice. And become part of communication, real voice or not. Try it along with letter boards that you can customize with individual names, simple phrases with needs or wants, etc. We had a few and they worked well. My husband also used to "write" letters and words on his thigh to communicate. So sorry you're all going through this. Yasmin.
 
We skype with my wife, me using the Tobii PCEye Go to type. Works great. It's more difficult with my 10 months old baby girl, who's learning her first words and trying hard to communicate with me. At least she understands the smiling and responds in kind.
 
Hi Kim C - My mom was diagnosed with ALS in September 2011, she passed away this year on January 16...she lived 1 year and 4 months after her diagnose...i was her caregiver with alot of help from her to siblings that she had...she was diagnosed with Bulbar als, everything happened so quickly with her, before you know it she is no longer speaking, how i miss her voice, she was 73 when she passed so no matter what i got her so make it better for her to comunicate with us, it was useless..she didnt want to use any of it, after a while she lived in a world of silence which is one of the hardest things to live with ...just keep talking to her, even if she cant talk back to you, tell her how much you love her....the only thing that she would use sometimes was an erase board that you can get anywhere, and only when she wanted to she would write there...that was our way of communication....i pray that god gives you patience...be strong...
Amy
 
Thanks for the ideas everyone. Mom gets frustrated with trying to speak and when she gets frustrated her speech is that much worse. I dread the day she stops speaking. I do know we've got to get a plan going immediately. Hopefully from your suggestions we can get something that will work.

Kim
 
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