Unread 03-05-2010, 03:01 PM #1 (permalink)
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Default Talking with people who can't talk

Having met a few PALS, I find myself at a loss about how to converse with people who can't talk. Sometimes they have speech synthesizers and sometimes not. I'm wondering what the people involved would prefer.

The conversations always feel awkward. I don't know whether to try to monopolize the conversation or to ask questions and then wait patiently for a response. Or if there is no speech device, to ask yes/no questions assuming they can signal in some way.

I don't know whether to directly discuss the difficulties, like saying "what signal will you use to mean yes? and no?"

Of course it's ironic that I feel uncertain about this since I will probably be in the same boat within a year or so. I should be able to anticipate how I will like things to work when I can't speak, but it is so hard to imagine what it will be like.

How have other people handled this?
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Unread 03-05-2010, 03:14 PM #2 (permalink)
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Default Re: Talking with people who can't talk

i cant talk but i like having company over even if they do all the talking. i only use my computer at home and type to communicate. i can still move my head for yes and no questions. when i go out i use a doodle board. i have a hard time with my parents. they cant read right . and they only read in Spanish which is harder for me.
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Unread 03-05-2010, 03:20 PM #3 (permalink)
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Default Re: Talking with people who can't talk

Very Good question Hal, From one that can't talk and be understood..... My friends bought me a white board with an erace cloth and pens. I love it in the car . It is faster than my machine much faster. Sometimes i will talk before i think and then realize this doesn't sound like what i am thinking. oops! I carry my ipot and have started using it alot more. and my lightwriter for home. I also carry a notpad and a pen in every knitting bag and purse i have. Helps me a little better to camunicate...
I know some folks don't like people finishing their sentances for them. I welcome it gladly.... My 2 best friends can understand me still and my 2 daughters and Richard so sometimes I will turn to them and they will finish up for me. What i don't like is making someone feel uncomfortable at all. So if they don't understaned I say one min and bring out my notebook or what ever I have on me. I kinda laugh and hold up 1 pointer finger and smile , that usually helps, them and myself. I don't know if you might carry an pen and paper with you to places whereyou go and pals are there? Then I just don't know when I can no long use my hands. Whole other story? Hope we get some answers. Hugs, Linda
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Unread 03-05-2010, 03:29 PM #4 (permalink)
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Default Re: Talking with people who can't talk

Hal, thanks for asking this question cause it has been my life for the past couple of years and in the last few months especially. Now that no one can understand my speech at all I am tied to my speech devices so having a conversation is a totally different experience than it has been for most of my life.

The main and most important thing to remember is patience. I can have a reasonable conversation with someone as long as they are not in a hurry. If I feel rushed I make mistakes in typing and then the words come out garbled or the speech program spells out a word and everyone is guessing.

The second most important thing is to not change the subject. This happens most often in a group setting and it is very frustrating to take the time to type something and by the time I am finished it is about a completely different subject than what everyone else is talking about.

It can be awkward but not if you don't allow it to be. Yes or no questions are good but can restrict a conversation so just be yourself and allow the other person time to respond and it will seem like you are talking to a normal person (or as normal as any of us are)

Yesterday, my wife Beth and I had a very nice visit from some old friends who we have not seen since before I was diagnosed and while Beth did most of the talking I was able to converse and ask questions and the visit was very nice.

If the non talker has no speech device then communication is more difficult and other than them writing notes (white board, pad and paper) or giving you some kind of signal for your yes/no questions it will be tough.

The key is to be patient and be yourself. And don't be like all of the people who talk to me in a big loud voice like I am hard of hearing or "slow" or start writing notes back to me (I know that you would never do this cause you get it but it always amazes me how many people don't).

Again, thanks for asking and I hope you keep your voice for a long time, I'm keeping mine on the answering machine.

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Unread 03-05-2010, 05:05 PM #5 (permalink)
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Default Re: Talking with people who can't talk

My husband doesn't mind someone finishing his sentence unless of course it wasn't what he was thinking! LOL Seriously, patience is key with both parties involved. Some people don't like their sentences finished though. I think it depends on the individual.

(Hal, please make all the recordings you can of your voice. We were watching a video the other day of our son's first day at pre-school and our son wanted to know who that was talking...of course it was his daddy.)
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Unread 03-05-2010, 09:44 PM #6 (permalink)
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Default Re: Talking with people who can't talk

What gets my goat is when people ask questions just because its quiet. They feel like there needs to be a conversation going. Trust me, us non talkers just enjoy being there. Conversation is not necesary, and please don't ask a lot of questions, unles they can be answered with a simple yes, or no. Thanks!
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Unread 03-05-2010, 09:58 PM #7 (permalink)
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Default Re: Talking with people who can't talk

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Originally Posted by Phil M View Post
What gets my goat is when people ask questions just because its quiet. They feel like there needs to be a conversation going. Trust me, us non talkers just enjoy being there. Conversation is not necesary, and please don't ask a lot of questions, unles they can be answered with a simple yes, or no. Thanks!

Phil, yes, some folks are uncomfortable with silence. I love silence. I never get enough of it because at work its background noise all day, at home its the TV 24/7 (husband is addicted). Many times in my car when I'm alone I turn off the radio.....ahhh silence.
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Unread 03-05-2010, 10:57 PM #8 (permalink)
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Default Re: Talking with people who can't talk

Just remember that people using a speech device can hear..
I find that people automatically talk louder when addressing him. We both look at each other with a smirk when this happens.
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Unread 03-06-2010, 12:42 AM #9 (permalink)
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Default Re: Talking with people who can't talk

Liz hated it when people tried to finish her sentences. Patience is key. I for one, relish silence, always have. With four kids in the house there's always noise around. I too frequently turn the radio in the car off just to hear.....nothing. Dick
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Unread 03-06-2010, 12:51 AM #10 (permalink)
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Default Re: Talking with people who can't talk

I change what I am going to say if someone tries to finish my sentences just to screw them up. Just me but my words are my words and if you cant slow down enough to wait for me to finish then go away and learn some manners.
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Unread 03-06-2010, 02:17 PM #11 (permalink)
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Default Re: Talking with people who can't talk

Just a quick aside (because my viewing platform is a little different).. Most people with ALS have full mental functioning and yup.. would appreciate finishing their own thoughts thank you very much. On the other hand.. one of the primary symptoms of FTD is being unable to find words (the infamous "say as many words starting with D as you can in one minute"... Glen came up with dog, dinosaur and diptheria) So after waiting briefly to see if he can finish his sentence, it is actually a kindness to give him the word he's searching for, if you're pretty sure it's the right one. Sometimes, even giving him the wrong one will spark his ability to finish his thought.

I guess the bottom line is... be sensitive to the reactions of the person you are talking to.. follow their lead. Hard to go wrong that way.
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Unread 03-06-2010, 03:23 PM #12 (permalink)
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Default Re: Talking with people who can't talk

It can be awkward talking to someone who can't talk. All of the advice above is right - just be patient and let them finish what they are trying to communicate.

As for "visiting" someone with ALS - my mother has ALS and can no longer talk. When people ask to visit we suggest they visit with someone else so that they can keep the conversation and wise-cracking and story-telling going, and then my mother only has to join in when she has the energy or something to contribute. So usually people come two at a time to visit.

That's not always the case - there are people who are dropping in almost every day by themselves, but they are the ones who are just naturally part of our lives (close neighbours, family etc). It's the more formal visits that can get awkward, and usually people are very happy to bring a friend along. In fact we've found people visiting multiple times because they enjoy the outing with their "speaking" friend, and the two of them can visit my mother, then go and have lunch (and probably talk about their visit) and it turns out to be a very pleasant outing for them both.

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Unread 03-06-2010, 03:45 PM #13 (permalink)
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Default Re: Talking with people who can't talk

Great discussion! What I have learned from it is patience is key. I have already learned that with ALS, patience seems to be constantly tested. Patience.
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Unread 03-06-2010, 10:01 PM #14 (permalink)
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Default Re: Talking with people who can't talk

Patience, Patience, and more Patience. I can type rather quickly on both my computer and my ipod so people generally have enough patience to wait to hear my answer. Of course if there is more than one person it is more difficult. One think I have noticed is that my husband does not have the patience of others. He is almost put out by having to wait for my answer. Of course it was always difficult to get him to listen to me when I could speak so this is even more frustrating. Don't know how long this will go on until I say enough and go home to my sisters. I saw it on her, "Just because I can't speak doesn't mean I don't have something to say" So please listen.
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Unread 03-07-2010, 10:35 AM #15 (permalink)
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Default Re: Talking with people who can't talk

I would like to add that if my husband is really tired and I try to finish his sentence as he struggles to get the words out and it's not what he meant he will respond with a wave of the arm and a rolling of the eyes to dismiss me. So, I usually let him go on and then try to repeat what he said and ask yes or no is that what you meant? He can't write and we are waiting for a speech eval. (Sometime in the next millennium! Don't know why it's taking so long!)
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