First Local Support Group Tonight!

[Lynda]

I don't know if all support groups handle things this way, but our local ALS chapter holds group meetings in various towns throughout the state. Looks like they average one meeting a week.

It appears that some are just for patients, some are just for caregivers and some, like the one we will be attending tonight, will be split into two groups, patients and caregivers.

I'm both excited and scared to meet people who are in our shoes. I wish that I could be in my husband's group just to support him. I don't want him to be overwhelmed. He seems to be in positive spirits about it and is looking forward to going, as I am.

I hope I feel the sense of welcome and family there, as I do here in this forum. I'll be stuffing my pockets with tissues, just in case my eyes start leaking.

 

[starente15]

Hi Lynda. I go to a local group as well and have found it tremendously helpful. Ours are monthly and every other month they split up the CALS and PALS for one hour to allow more open conversation on both sides. They bring in guest speakers from ALSA, lawyers, etc. So much to navigate and so much information. Just knowing you're not alone is huge. I was very nervous the first time we went but now I like to think that everyone there is a friend. We recently did a local ALS walk and saw almost our entire group there. Overwhelming and motivating at the same time. Hope it went well!

 

[Nikki J]

Hope it goes well like clinic it can be a little overwhelming at first especially if some people are much more advanced than you but once you get past that you can make some really good friends. And you can pick up tips for navigating the clinic and other local services. Let us know how it goes

 

[Green Queen]

It's weird this MND thing, I'm thrilled for you Lynda that there is support for both you and your beloved, but how sad is it that there needs to be support groups?
I hope the meeting gives you peace of mind, that you are not alone, and good solid guidance for days to come.
Please share your experience.
God bless, Janelle x

 

[Lynda]

So, I had to write to tell you what a fantastic experience we had at our first group!

Part of me was so concerned that Michael would need me for support and that I'd be with the caregivers in the other room, but it ends up, my concerns were unfounded.

There were maybe 10 couples there, it so happened that all the caregivers were wives and all the patients were husbands. We sat and chatted for 2 hours about anything and everything. We all introduced ourselves, gave info about the diagnoses and then we just started an ongoing dialogue. We talked about everything from portable urinals to preferred doctors to handicap access, etc.

For the first time since Michael's diagnosis, I slept through the night last night. He had a great experience and so did I. We gathered lots of information, many fears were put to rest, or at least eased.

I can't speak highly enough of the group and we are looking forward the July meeting with these folks.

 

[affected]

That's so wonderful. Mostly people here report that support groups are indeed supportive.

Onwards towards making a life after diagnosis xx

 

[Barbie]

Great news Lynda! I only went to a couple of local meetings and my husband would never go. I hope you will consider a split group also, that is good for both the pals and cals to be able to really open up about feelings.

 

[Lynda]

Barbie, this was a split group. The patients in one room and caregivers in another. This was the first time they've done that and it was highly successful. I'm sorry that your husband wouldn't go.

 

[Green Queen]

Lynda, I'm so thrilled the meeting was a good experience for both of you.
God bless, Janelle x

 

[davbo49]

i think it's good to have both sides. there is somethings needs to be said apart. i know i don't want to bring any more down on jane as its is. i know jane needs to vent her self and that ant going to happen why im there.

 

[Green Queen]

Dave you are sooo right! I can tell other people about progression etc, but not Wayne. He isn't ready to hear it. I'm not quite sure who he vents to or even if he does. I have never asked. It's not that I don't care, I just think he needs his secrets in regards to who he tells what.
God bless, Janelle x

 

[starente15]

Glad to hear it was a positive experience and you have support!

 

[Alana]

Hello everyone,
I'm new to this forum. My husband just got the bad news. ALS is with us. I went to my first caregiver meeting and it was wonderful. I felt like I was understood as we are all in this together. It was overwhelming to hear the stories but I was grateful for being informed by such kind, brave people.
I will be attending as many as I can, the more knowledge the better I can be for my hubby.
Alana

 

[affected]

Sorry to welcome you Alana.

When you feel able, start your own thread (click on Current Caregivers (CALS) link at the top of the page and then click New Thread), and tell us a little about yourself and you husband.

So glad the group was what you needed.

 

[MaxEidswick]

did you get a 2nd opinion? from an ALS qualified/trained neurologist? most neuros can't spell ALS -- seriously.


like all the others, sorry to meet you here but welcome!

I have found that being active here on

these forums has helped me in way I cannot explain, but you will see.




Max - Friday, June 26, 2015 10:44:54 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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