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"don't help me talk"

in keeping with the theme of this thread... i just returned from a visit to my aunt. she has bulbar onset of als and her speech is getting extremely difficult to understand. her tongue shrunk. i couldn't believe it. and she can't pucker her lips or stick her tongue out.

anyway, what i found this visit was that she gets VERY upset if she's trying to speak and people just nod "yes" without really understanding so they don't hurt her feelings. and also, she gets worked up with people who try to finish her statements when she's talking to people. i think she's very afraid (of course) of not being about to communicate and she doesn't want to know a thing about machines that speak for you or anything like that. i guess time will tell if she changes her mind. she's got another granddaughter on the way so i would think she'd like to be as strong as possible for when the baby comes but she's resisting a lot of things.

on the other hand, she tried accupuncture and felt she had some great results. i know there are tons of debates about this sort of treatment but... whatever works for you.

however, her speech is not sounding better to me. it's all so scarey. luckily, she laughs at herself and still has a very strong sense of humor!

love to everyone,
nicole
 
My dad has bulbar onset ALS so his speech and swallowing were effected immediately. He had been driving, going to church, shopping....pretty much doing alot of things, except being able to communicate by speech, until a few weeks ago. He does write some and has a Dynavox speaking device. I tease him alot about how well we do at "charades" because he lets you know what he wants! lol So if the question is, do people want to continue living after losing their speech......I think it is up to the individual but I know my dad has done alot of living in the past year in spite of having no words left at all.
 
Speech-Banking w/Model Talker Makes Me Feel Better!

My speech problem is my first and fastest-moving symptom. At first I felt like I wouldn't want to live once my voice was gone. (Although I'm still in denial that that'll really happen) :) . I thought I'd be completely isolated, unable to participate in conversations, and people would think my brain was gone along with my voice. But as soon as I began to read all your posts about alternative communication devices, and Model Talker voice banking especially, I learned that I can still speak in my very own voice and be just as gabby as ever (well, almost -- I've always talked too much, so maybe I'll have to be more concise, be a better listener, and think before I speak)! I've recorded a whole bunch of phrases besides the 1649 programmed words/phrases that the program required. I even recorded a laugh!

I'm trying to make a bargain with God now, that I'll be happy and grateful to use speech devices as long as I have my arms and hands so I can type, hold a book, play the piano, etc. When my hands go, then I'll be about ready to give up and croak, I think. I'm 70, so I feel like I've already had a wonderful life anyway. I don't like to think about my legs going, (God, are you listening?) but I'm ready to live in a wheelchair if I can still use my hands.

I can't say enough about Hospice and its volunteers. My mother and dad, who died from other things than ALS, were helped immeasurably by wonderful home and residential Hospice workers. They are God's own angels.
 
speech

I have bulbar onset A.L.S. I began loosing my speech in Jan 06. I have no speech at all now and its been that since December 06. I cannot swallow and have a peg. As pointed out by someone else, I use E-triloquist on my lap top. I also purchased speaking dynamics. The Speaking Dynamics allows me to pre program talking points. I have set it up for answering the phone, going to the doctor and a number of other activities. I am in insurance so I have clients list the questions and then call them back and use the speaking dynamics to answer. It eliminates the individual having to wait while I type out the answer. I miss talking, eating and enjoying things as simple as a cup of coffee. But I can still drive, walk, and use my hands and arms. I try and focus on what I can do and not what I used to be able to do. As bad as this is I have met many brave folks who are an inspiration. Also, PALS are so helpful to one another as this site demonstrates. I always look for Captain Al's take on things. I also use Sprint relay. That works well to.
 
Instant message to talk to my mom

Thank you for all the great ways to augment speech.

Here is a simple way I can "talk" to my mom on the phone. It requires high speed internet (no dial up) and Instant Message.

My mom and I are on the phone (I put her on speaker). She talks and I respond via instant message. My message comes through instantly.

I am not a pro on instant message- a friend set it up- but ask any teenager, they are the masters!
 
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