Old 09-05-2008, 09:45 PM #1 (permalink)
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Default What do I say to him?

Hi,
My neighbor was diagnosed with ALS about a year ago while I had moved. Recently I have moved back and I'm not sure how to talk to him. His life has been changed so dramatically in just a year. He has a feeding tube, a electronic device to talk and has daily breathing treatments, plus the basically said 6 months is it! I can't imagine hearing that. I don't want to sound too depressing with the "oh I'm so sorry's" but I can't just act like it's not an issue. I want him to know my family is here for him for whatever he needs and that he doesn't have to be alone. I have wanted to invite him over for dinner parties that some of the neighbors do occasionally but I thought that would be too akward with the feeding tube. I want to include him in things so he's not alone all the time. How do I talk to him? What do I say? I thought I could get some advice from people who are actually dealing with the same thing.
Thank you for any advice you may have.
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Old 09-05-2008, 10:38 PM #2 (permalink)
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How great that you want to communicate with and support your neighbor. I know he will appreciate it enormously.

From my point of view (I have speech and swallowing problems), I'd say don't be afraid to talk about ALS, but let him take the lead as to how many details he wants to share. I don't think it's at all depressing to have a friend say, "I'm so sorry you're sick" and ask how you're doing. I'm always rather glad to have someone interested in what's going on with me in general.

If he's not able to speak, and is on a feeding tube, it would be very tiring and awkward to have him to a dinner party ... talking to a lot of people is really hard when you're depending on a speech gizmo. But if he's interested and up to it, he might want to come by for "dessert" to be with a small group of old friends for a while. But ask him what he's interested in doing.

You could say to him exactly what you said here. You'd love to spend some time with him, but don't want to wear him out and you're not sure what he's interested in doing. Perhaps he would like to join you to watch a favorite movie on video, or a football game on TV.

My big advice (which I just went through with a friend yesterday) is to talk to him like an adult. Don't assume that because he can't speak easily, he's somehow lost 50 IQ points. Don't finish all his sentences for him. (You can finish a few ) Don't use the coo-ing voice one uses with a child!

I'm sure that your friendship will mean a lot to him.

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Old 09-05-2008, 11:05 PM #3 (permalink)
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just knowing that you care would make me a very happy person. and treat him as a friend.Im in bad shape also and i know i do hate people treating me different.So hang out with him be a friend you do all the talking lol but be a friend.
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Old 09-06-2008, 02:00 AM #4 (permalink)
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Default What to say; what to do

If you have a friend or relative with ALS and want to be helpful, by all means say so, but also DO something tangible so they will know you do care.

We have neighbors who help me take out the garbage every week, since my husband is no longer able to do that.

We have another neighbor who cuts our lawn.

We have some other neighbors who are very strong, well-built men who can assist my husband if he falls or has trouble sliding down in the bed - both of which have happened and both things are too hard for me to do much about, since I am not a large person and cannot lift my husband myself.

Other friends have brought dinner, come to visit, e-mail my husband so he can express his wit, his intellect and sophisticated speech patterns which ALS has taken away from him when it took his voice.

Are we grateful? We thank God for these people who live whatever faiths they profess.
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Old 09-06-2008, 03:34 AM #5 (permalink)
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My mom suffered from ALS for 3 years before her demise at the age of 43 this last May.
Throughout those years, she had very little support from family and friends.
They only visited during festive seasons or if she had had a major surgery done.
So that basically means that more than half her time, she was alone.

And that is really the last thing anyone would want to feel if they know that they are going to kick the bucket real soon.

Drop in as much as you can just to say hi.
Talk to him as normally like you would if he did not have his condition.
And show him that you genuinely care like help him take out his trash or something small like that.

I'm sure would make him feel alot better
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Old 09-06-2008, 07:51 AM #6 (permalink)
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Thank you all for your replies. I will try what you all have said. May God bless you all.
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Old 09-08-2008, 02:19 PM #7 (permalink)
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Smile Information in addition to sympathy?


I am a Bulbar Onset PALS, diagnosed in April 2008. In my opinion, I appreciate people who ask me about the specific treatments and devices that I have for my symptoms. I have always had a "pet peeve" with people who chirp "How ya doin?" They do not really want to know, and I don't really want to tell them. If I feel ornery I'll shout with my clumsy tongue "Terrible."

On the other hand, since I and my wife have spent quite a bit of time and effort researching treatments and devices, I do take pleasure in sharing that information about the technical details and underlying reasons for each medication or piece of equipment. Also, this is a way to educate people a bit about what ALS is all about and the burdens it imposes.

I realize people do want to show some sympathy, but so often the conversation is awkward and does not lead any where. Of course they're sympathetic! I prefer that they be curious as well. Just my opinion.

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Old 09-08-2008, 08:56 PM #8 (permalink)
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I might add that if you knew this man from before he got sick, you might already know his interests and what he likes to talk about. I know a man who has been in a wheelchair all his life but watches every golf tournament and reads a couple of golf magazines every week. I struggle to understand him on two levels: first, because he has difficulity speaking but mostly because I know very little about his hobby, LOL.
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Old 09-08-2008, 09:42 PM #9 (permalink)
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Talking

I just want to add that when people ask how I'm doing, I usually reply "Mahvelous". A friend of mine shared this story with me shortly after my 6/3/08 diagnosis of ALS:

The 4 older ladies were playing cards. One lady said "Oh, look at the beautiful fur coat my husband got for me", the next said "oh, my husband hired a maid and a cook to take care of everything in our home", the next said "oh, my husband is just the greatest! He takes me shopping for diamonds at least once a week". The fourth lady sat back in her chair and kept repeating "Marvelous" after each ladies' comment.

One of them finally asked why she kept saying "Marvelous". The fourth lady replied "well, my husband sent me away to charm school just so everytime I wanted to say BULLSH--, I would say "Marvelous" instead!"

enjoy,
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Old 09-08-2008, 11:00 PM #10 (permalink)
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Good one Brenda. When people ask How you doin? I usually reply Do you really know or are you asking just to be polite? My answer depends on theirs. The blank stares are really funny sometimes. Guess I have a warped sense of humor. I think the Forum did it to me. Beware you guys.

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Old 09-08-2008, 11:35 PM #11 (permalink)
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Al,
Nothing at all wrong with a warped sense of humor. I kinda like the blank stare effect too, but as much as I talk, it's hard for me to keep quiet! hahahahaha

Happy Monday Evening!
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