ALS Hotline inspired by Candd

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paula B

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Has anyone ever heard of a als hotline? I am wondering if there is a number to call and talk to someone like say when you are feeling down.
Perhaps we need to start one or do something. This group is great but,,if a stressed out person was able to call and talk to someone rather than wait for someone to answer there questions online that maybe helpful also.
What i am thinking is,,,ok like maybe in AA how they have sponsors,,,perhaps we could do that. I know all of us cant speak,,i can speak better than type(reason for my short but to the point replys).
I have that unlimited calling on my phone.
So good idea or no?

Paula
 

joelc

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I like the idea in principle. But, unless a person has a degree in counseling it might not be as good an idea as we think. It is one thing to post on this forum....it is quite another to talk in person to someone who is very down. The callers expectation goes up and it can really get intense for the helper. There is no better way to bring yourself down than doing something like this. In short......it is dangerous.

For friends to talk it is okay and beneficial, but if someone you don't know calls and starts to threaten suicide if you can't help them.......it can turn ugly really quickly. You could also leave yourself open for law suits, especially if you don't have a counselling degree.

I think something like this for friends and on an informal basis is good. But we should be carefull advertising something like this. I don't mean to shut down a good idea, or discourage friends from supporting each other, but I have seen things like this turn bad and no one needs this kind of frustration on top of ALS.

Paula, I really appreciate your spirit and desire to help........I just wish it was that easy.

What are everyone elses thoughts?
 

Jamiet

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I would say the ALS assn if your in America?

I don't know..., but it's a suggestion....
 

paula B

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Joel,
I still think its a good idea,,perhaps there are still some bugs in it but i think it can be worked out. Perhaps call it Phone a friend. I think people will know they are not calling
doctors,,rather other people like themselves.
You do make some valid points about this.
Lets work on this together and figure it out.

Paula
 

joelc

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I don't want to make an issue out of this, just wanting to offer caution.

I also like the idea and if we can keep it between "friends" it should be safe. Where it gets questionable is when a stranger gets our phone number and calls, then a well meaning family member gets their nose out of joint............ See where this is going?

Also, some of the people who could offer the most help are already past the point of being able to speak. You are right, there are some bugs to work out, but they can be overcome if we get creative.

Joel
 

CindyM

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I think it could work. The training that other hot line helpers get is not too intensive- maybe a few weeks or so. Because of the training involved, there is usually some sort of screening of volunteers. Nothing major but you want to be sure to weed out those with poor intent and make sure the volunteers can handle a heavy emotional load. And there is usually some supervision involved to help the helpers, so to speak.

So we are talking about some money, I think, to make it all go smoothly. But it is a great role for former CALS who want to give back, other friends and family who aren't needed as CALS, PALS who have the time and inclination, and even students looking to increase their experiences.

I think it is a good idea, Paula. Because this disease affects a relatively few folks, people tend to feel isolated. That's where hot lines fill in the best - in between the regular support group meetings or when somebody lives too far away from a physical meeting. Regards, Cindy
 

Omar

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hey guys,

As long I still can type I will keep on chatting and typing, as long as I still can walk I will keep on going out and walking, and as long as I still can talk I would be happy to speak with other PALS and hear their voices.

;) omar
 

Al

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The ALS Society gives my name and number to newly diagnosed patients in my area that want to talk to someone dealing with the illness. I am not aware if this is a normal practice everywhere but as Jamiet suggested you could call ALSA and inquire if they had someone to talk to and have the number handy for future use.
AL..
 

CindyM

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Good idea, Al. No sense reinventing the wheel! :) Cindy
 
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