Old 07-05-2016, 11:20 PM #1 (permalink)
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Default Question about talking to friend with ALS

I'm changing from the thread if nobody minds. My best friend has
ALS. She lives in a different state from me & I don't know how to talk to her. Her speech is impaired & its hard to understand. What do I say? How are are you seems very inappropriate.
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Old 07-05-2016, 11:27 PM #2 (permalink)
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Default Re: Question about talking to friend with ALS

I moved your post barneydog.
Please do not hijack other threads.
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Old 07-06-2016, 01:35 AM #3 (permalink)
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Default Re: Question about talking to friend with ALS

Barney, thank you for wanting to stay in touch with your friend.

First, since you are friends you might help her find text-to-speech technology that will help her "keep talking." Depending on her device/platform, there are free and commercial apps and you can find some doing a search here. Meanwhile, if she can text, that's one way to have a conversation.

Second, do some talking yourself, let her listen, catch her up with your life, ask about her, have a conversation if you can, talk to her as a friend, and you'll find the right topics. Instead of the clinical "how are you," there's "how are you doing," "how can I help," "how are things going," etc.

Best,
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Old 07-06-2016, 05:42 AM #4 (permalink)
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Default Re: Question about talking to friend with ALS

I do not like the how are you doing questions. I would say the number one thing is do not treat her as though you feel sorry for her or like you have to walk on egg shells around her. If you knew her before ALS you still know her today. Talk like you always have. We are still the same people just our dreams and aspirations have been cut short. Yes we physically decline and physically struggle but inside and in our minds we are the same. In general we just want to be normal - so treat her that way.
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Old 07-06-2016, 06:17 AM #5 (permalink)
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Default Re: Question about talking to friend with ALS

I have watched my husband with his friends, and he's happiest with those who treat him like they always did. voice to text is a good idea, or how about Skype or FaceTime so you and your friend can see each other. Then YOU talk. Talk about your life, mutual friends, politics, sports, fashion, or the weather--or shared memories. Tell your friend about your concern and desire to find the best way to communicate. Her mind is intact.
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Old 07-06-2016, 06:36 AM #6 (permalink)
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Default Re: Question about talking to friend with ALS

Yes, talk to her as before! It's important she can communicate with others, be it using low tech or high tech methods. Not being able to communicate will leave her feeling isolated, frightened & vulnerable.

If you're asking a question, ask a closed yes/no type. Not e.g. "Do you want that hot or cold?" but rather "Do you want it cold?" so your friend just has to nod or shake her head.
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Old 07-06-2016, 12:38 PM #7 (permalink)
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Default Re: Question about talking to friend with ALS

Is there a way you can plan a visit? That would be the best thing you could do for her. If not, find out what method of communications she uses and converse with her that way. My distant relatives e-mail me and, for now, that works. However you decide, please stay in touch until the end. It will mean so much to her and to her caregivers.

You might want to call her CALS for further suggestions.
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Old 07-06-2016, 11:43 PM #8 (permalink)
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Default Re: Question about talking to friend with ALS

thank you for your good advice
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Old 07-06-2016, 11:46 PM #9 (permalink)
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Default Re: Question about talking to friend with ALS

sorry, didnt mean to infringe. New to this site.
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Old 07-07-2016, 01:08 AM #10 (permalink)
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Default Re: Question about talking to friend with ALS

You did/do not infringe, Barney. Stop by any time. You have gotten some good advice, and I would only say, take a piece and go for it. I'm sure she misses talking with you, so however you end up engaging, just start somewhere.
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