Old 08-11-2017, 08:01 PM #1 (permalink)
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Default in person support groups

Sorry in advance that this is long.

I had Clinic today, and it so happened that at the same time as my visit the local ALS association support group was going on (they meet in the conference room at my ALS Clinic). Since there was a delay between seeing pulmonary and waiting for neuro they asked me if I wanted to sit in the support group and they'd get me when my doctor was ready instead of me just waiting by myself in the exam room. I should add that normally my husband attends with me, but he could not today due to our childcare falling through last minute.

Anyway, I went and sat in on the support group and there was a husband and wife that were CALS (parents of the PALS). They were sharing their grief and the mother was crying. They were talking about how their son, who is very newly diagnosed, doesn't want to talk about the diagnosis. It reminded me of how I am with my parents because it is really hard for me to discuss my disease with them I get too upset. Anyway, I became very emotional listening to them because it made me think about my own parents and I really struggle with the fact that my situation causes so much grief to them and my other loved ones. When the nurse came to get me to see the doctor I couldn't hold it in and cried really hard for a few minutes once I was out of that conference room. I actually had to stop in the hallway and the nurse just held me while I cried.

A part of me thinks it was probably healthy to confront some of those emotions and have a cry. I have not allowed myself to cry since my diagnosis day in early March. But another part of me feels like I never want to attend another support group again because it HURT.

I'm not sure what I am looking for here.. I guess I'm wondering what other PALS think and how you feel about these types of groups and the feelings that come to the surface in that emotional environment.
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Old 08-11-2017, 09:27 PM #2 (permalink)
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Default Re: in person support groups

I have wondered the same thing myself and have never attended one. Curious to see responses from those who have attended
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Old 08-11-2017, 09:34 PM #3 (permalink)
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Default Re: in person support groups

I was dx in August 2015. My friend, Fred, convinced me to go to the first support meeting in March 2016. We both cried through the whole thing. Everyone was so positive, friendly, and understanding. Back then there was really no way of physically telling that I had the disease so I got lots of questions asking what I was doing, etc. We ended up going out for a late lunch with about 10 other PALS and CALS. Four were in chairs so Fred and I drove ahead and made sure the seating was accommodating.

We formed friendships with these people. Two are now flying free and that's the heartbreaking part. We attended (or I attended alone) for the next six months. After the two passed, it was harder and I didn't go for another 4-5 months. We went again last month but skipped this month.

The wife of one of the PALS that passed, visits me about every other month. I have no idea how she does it but she does and it helps. I got pretty close to another PALS and she is failing pretty fast. It breaks my heart.

I don't know the answer. I don't know if I'll ever go again.
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Old 08-12-2017, 01:01 AM #4 (permalink)
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Default Re: in person support groups

Hey Kristina,
I go faithfully to group. My bf goes with. The first couple were hard to get through, but, it gets better....
We have about 10 people (+our regional ) Most are CALS, but, there is one fALS (and her daughter), one gent (chair bound, using eye gaze tech) one lady (bulbar issues as well), and me.
In fact, we discussed inviting the past cALS, to catch up..... I miss seeing them, after all, it's like we're all one big ole family now...

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Old 08-12-2017, 09:21 AM #5 (permalink)
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Default Re: in person support groups

I have never attended a support group meeting mainly because I don't know if one is available in my area, but if there is, and I believe that there probably is why wouldI want to make myself sad ? I can do that very well by myself . I don't want to share or be shared. I'am happy just the way I am and intend to stay that way.
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Old 08-12-2017, 09:30 AM #6 (permalink)
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Default Re: in person support groups

We go every 3 mos to VA support group.
Helps to be around others with ALS, to get tips etc.
It's different for each, some like the group some not.
I am a people person so I am interested in everyone's story.
The cals meet in a room and pals in another room.
Hard part is first getting there and seeing who's not with us now and then hard to meet the folks just new espically if they are younger with families.
I say isolation for me is not good , I need others input and who knows I just might have the right words to help another.
I say go be apart of, together we'er strong!
Love ya. Chally
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Old 08-12-2017, 09:52 AM #7 (permalink)
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Default Re: in person support groups

I think the VA does it right with separate support groups for CALS and PALS. There is a place for groups with PALS/CALS teams too but CALS alone in with PALS alone have too different needs and can lead to hurtful moments unintentionally
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Old 08-12-2017, 03:43 PM #8 (permalink)
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Default Re: in person support groups

I have only been to one support meeting and found it difficult, and don't ever want to go back.

I have not been to clinic for 2 years because it became repetitious and takes all day.

The worst crying episode I have had was at my Cardiologist a few months post diagnosis. He told me he was so sorry that I had ALS, and ask me if I wanted to continue seeing him. I just lost it, he came over to me and gave me a big hug, that seemed to increase the waterworks. I was so embarrassed and had to remain in the exam room for 10-15 while I regained my composure.
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