Go to local support group, or not?

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COlisa

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Hi again,
My husband has initial diagnosis of ALS (actually revised to progressive bulbar palsy, with likelyhood to progress to ALS within 1 year because of a normal EMG).

Ths local ALS Association support group has monthly meetings. This month's meeting is the day after tomorrow.

I feel as if it would be beneficial for us to go (it is for PALS, friends & families), but am wondering if it seems premature to go?

We are still awaiting outcome of some of the "rule out other diseases" tests. I don't want to barge in on this (clearly) close knit group, but feel like we would like to gather as much info on everything possible. Also, I think it would be good to be able to speak freely about what's happening as we have not told any of our local friends about what's happening (only have told family, who are all far away).

What do you all think?

Thanks,
COlisa
 

Al

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My opinion is to go and say that your husband has a provisional diagnosis of ALS and just tell anyone that asks that more tests are coming. Most of us get 2 or 3 opinions anyway sou aren't out of place. The support is good for you because no one really understands what it is like to go through this unless you are doing it yourself. If you get cancer there are all sorts of treatments and options. We're pretty limited here. Best to be with people that have some answere and can relate to what you are going through.
 

COlisa

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Thanks Al. I think we will go.

I guess part of me is still thinking "ALS is so often mis-diagnosed....maybe it is just something else", and going to the group might make it seem too "real". I've got a bit of a denial thing going on, in case you didn't notice.
 

Al

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I would say we've all been through that one and some still are.
 

Carol Deboer

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Hi Lisa,

I agree with Al, go to the meeting. It certainly will not hurt. Education about this als thing is power. And, as Al said, they are all in the same situation. You may get some answers that you will need. Denial is normal. We went through all the staages of that one too. I think that until you get all of the other tests done and see all the doctors you won't rest easy anyway. I will pray for the best for your family, and hope that it is not als. Take care and don't worry we will all be here for you.

Carol
 

COlisa

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We went to the support group last night. It was really good and I'm so glad we went. They had a speaker there talking about "Comfort Touch" massage & Reiki. Very interesting. People were great & made an effort to come over to talk to us after the meeting, making us feel very welcome. Lots of discussion about Lyme's disease too. We were not the only "1st timers" there, which was kind of nice in an awful way, if you know what I mean. (Nice in that we were not the only new people, awful in that their PALS diagnosis has already been confirmed.)

Thanks to all who encouraged us to go. It was a very positive experience.
 

Carol Deboer

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Hey Lisa,

Glad to hear that you went to the meeting and it was a positive night. Good stuff. Sometimes we have to put ourselves out there, even if it is something that we do not want to do. However, in the end you meet new people, have good conversation, and possibly meet new friends that will help you out. Glad it was a good experience for you both.

Carol
 
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