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This is my first time to write. I am new at this. My mother is 86 and has ALS. She is right handed and that no longer works as well as her speech is very garbled. What can I do to help her communicate with her nursing home staff and with me? She has limited movement with her left hand but is still able to feed herself and take her own meds. If there was some help with something that could make her communication understood it would be greatly appreciated. she gets so frustrated she starts crying and then this takes up all her strength.
Thanks for any help.
Billie
 

Granny

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Hi, and welcome to this forum.
I am so sorry that your Mother has ALS, but hope you can find some help here, sometimes it helps just to talk to other people who are going through the same things as you.
I am not an expert at all, but I have attended some seminars about communication. I have bulbar ALS and can't speak. I still have good use of my hands, so I write most everything on a small whiteboard and also use a communications device that is like a little computer.
For your mother, maybe just an alphabet display -the ahphabet printed out on a board or paper that your mother could point to with her left hand to spell the words. Or, sometimes if she could point to just the first letter of the word to give a clue, you could understand the rest of the word if she spoke it.
Also, maybe a board made up with phrases or things that she would say often, like, "I am cold", "I am in pain" "Please bring my glasses" or whatever would be suitable for her.
Do you have the services of a Speech/Language Therapist in your area? They might have some other ideas of things to help your mother.
I know there are devices that are controlled with eye movement and things like that, but they are hi-tec and you would need a therapist to talk about them.
Hope this helps and I pray that your mother gets something to help her communicate better.
Leah
 

Mike27

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Diagnosis
10/1993
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State
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Hi Billie
I empathize with the frustration your mother feels. It’s a terrible thing.

What Leah has written is perfect! The white board or pre-written statements are great. I actually carry a business card holder (picked up at Staples) and have several pre-written statements that I printed on blank business cards (also Staples) from my computer.

If I need it, I find the appropriate card and show it to whom ever I am speaking with. So far it works pretty well. Of course, you can’t hold a conversation.

Do you have an ALS Society in your area? They usually have an equipment program which includes speech synthesizers. I signed out a small one from my Society called a “Lightwriter”. It holds several (over a hundred) pre-written sentences, and you can hold a fairly decent conversation with someone.
There are several different kinds of machines and adapters depending on the mobility issue.

Hope this helps.
Good luck to you and Mom!

Cheers!
 
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I would like to thank you for the replies. I am waiting for a therapist to come and give her another assessment for things she could add to her electric wheel chair to keep her sitting properly and sometype of trough thing that would hold her right arm on the arm rest instead of falling off all the time and getting bruised. He mentioned that possibly a speech therapist should be consulted to see what is available. That is all to happen this week. I really like the ideas you have made and will look into them.
Yes we do have an ALS society in this province and it is only a couple hours away from where I live.
Once again thank you and I will keep in touch.
Billie
 
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I got a magnetic alphabet board for my mother. When I went to see her with it she was not impressed and started crying. I just left it on her table and tried to explain that perhaps it would help in communicating. She did not seeminterested at all. when I went this a.m. to visit her I noticed that it is still sitting where I had left it. I guess I just have to wait until she thinks she is ready. she did not seem as depressed today but I know this won't last.
Thanks for all postings andinfo. It is a comfort to know one is not alone.
Billie
 

Mike27

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Joined
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Messages
280
Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
That's too bad that she started crying Billie.
She'll come around...she has a wonderful child looking out for her best interests. That's very empowering!

Cheers!
 

Granny

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Hi Billie,
I remember when someone mentioned to me about someday needing a whiteboard to communicate, and I started crying. That was a long time before I needed it. But, when the time came, I gradually accepted it. I had a longer time than your mother to get used to the idea, which made it easier to accept. Now I could not go anywhere without my little whiteboard and erasable marker! I think I know something of what your mother feels, but she will come to feel better about it. I take from what you said that she could not write out what she wanted to say? Would just a sheet of paper with the alphabet done up on the computer in large letters and laminated that she could point at to spell the words be more acceptable at first?
You are a very caring daughter, and I hope your mother becomes more comfortable with her need for a new form of communication.
I don't have any good answers, but wanted you to know that we care.
Love and prayers
Leah
 
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I will try the plain paper with large letters printed so she can point to it. Never thought of that.
No she cannot write as her right hand is pretty much immobilized. She still can use her left hand even though it has limited movement. She still can feed herself using her left hand so that is encouraging. This is the last little bit of independence she has left.
Thank you all for caring and sharing.
Billie
 
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