anyone know of support groups specifically for the newly diagnosed?

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KevinM

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Hi Kevin and melab,
I’m finally checking back in here and I can identify with the feeling of still being in shock and how alone this disease can make you feel. If you all felt like doing a phone conference call at some point to discuss these feelings, I’d be open to that. Or if you wanted to do it online we could use a portal such as Patients Like Me or exchange emails. Let me know if any of those options might work.
Thanks for checking in Michael. I think there are forum restrictions on exchanging phone numbers. Let’s ask a moderator (Nikki?) the best way for four or five of us to exchange numbers and coordinate a conference call. Thanks, Kevin
 

affected

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There are no rules that say you can't exchange phone numbers, just it's not a good idea to post them publicly. If you have PM rights, you can exchange that way. If you don't then Nikki or one of the kind moderators would possibly help out get a private message across :)
 

Michael_67

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When I was first diagnosed, I found a counselor who understood ALS and we did one-on-one counseling for a few months. We did some in person and some from my iPad because I was still working. It helped.

There are so many virtual groups. You can even create one on Facebook. Most of the groups there add new members just about every day, sometimes more than one a day.

Hi Kim, Thanks for this response! It got me thinking that I would love to find a counselor who has worked with ALS patients and/or people dealing with “terminal” diagnoses. I was wondering if you had any advice /thoughts on the best way to find one.
 

Michael_67

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Thanks for checking in Michael. I think there are forum restrictions on exchanging phone numbers. Let’s ask a moderator (Nikki?) the best way for four or five of us to exchange numbers and coordinate a conference call. Thanks, Kevin
Hi Kevin,
OK I reached out to a Nikki on the newly diagnosed thread you began about the phone number question. I will keep you posted when I get a response.
 

Nikki J

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Check pms kevin, Michael Melab
 

KimT

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If anyone in Central Florida wants to meet up, I'll try to be there. Also, I will speak to anyone who just wants to talk. I seem to be progressing very slowly so I've accumulated a lot of information on the disease. My condo is accessible if anyone wants to visit.

I thought about taking a break from the forum but........guess I'll just reduce my time here.
 

KevinM

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If anyone in Central Florida wants to meet up, I'll try to be there. Also, I will speak to anyone who just wants to talk. I seem to be progressing very slowly so I've accumulated a lot of information on the disease. My condo is accessible if anyone wants to visit.

I thought about taking a break from the forum but........guess I'll just reduce my time here.
Hi Kim. We’d love to include you in the conversation. Under PMS, Nikki has set up a contact info thread where we are posting our phone number and email. Michael is busy this week, but we are talking about a conference call sometime next week. Love to have you participate. Kevin
 

KevinM

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Hi all. I’m available any time this week. Michael, feel free to call one on one or try to conference in others if they wish. Just let me know a time you might want to talk. Kevin
 
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