ALS News Today Forums Forums Living With ALS Do you attend an ALS support group?

  • Do you attend an ALS support group?

    Posted by Dagmar on June 11, 2024 at 1:01 am

    Have you attended an ALS support group? Was it an in-person group or held online? Did you find it helpful? And are you still going? What would your dream support group look like?

    Let’s help other pALS by sharing our experiences and thoughts about ALS support groups.

    Carol replied 4 weeks ago 13 Members · 13 Replies
  • 13 Replies
  • Dagmar

    Member
    June 11, 2024 at 12:06 pm

    There are so many options now – in-person, virtual, region or state, or international. I’m curious which you’ve tried and what worked best for you.

    In my area, the closest support group was one hour away and that was back before Zoom. It was an effort to get ready, make the drive, go into the building, and be there for one and a half hours. During the pandemic, when support groups went to Zoom – – I was hooked! In Arizona, they still offer both options. But the topics seem to repeat from year to year, so unfortunately I stopped attending.

    I look forward to reading what our members think about this topic.

    • John E. Mosman

      Member
      June 14, 2024 at 8:20 am

      I attend two Zoom support groups. The first is my private hospital where I was diagnosed. During a recent local walk for ALS, I was able to meet one of the particpants at our local ALS Walk. She is in her late twenties, early thirties and a go getter learning all she can and partipating in trials. The other group is through the VA. Their presentations are excellent about how to deal with all this. Both very worthwhile from a learnng perspective and the support we provide for each other.

  • Andy

    Member
    June 11, 2024 at 2:49 pm

    I regularly attend the ALS Association National Caregivers Support Group for men. I have found it to be very well facilitated and excellently structured so we are able to speak frankly about being a male CALS. All of us are spouses of ALS patients and have similar but different experiences. The facilitators regularly follow up with information and links to resources that are germane to our discussions.

    My wife and I also participate in our local ALS Association general support groups. The commonality of our experiences make it easy for all of us to share and ask questions.

    Both support groups are conducted via ZOOM and that is really helpful.

  • GregC

    Member
    June 11, 2024 at 2:59 pm

    I belong to an ALS group that is an invaluable resource for me. We meet 2 hours once a month on Zoom. Most of our members are located in our metropolitan area. There are about 15 people in our group and about 10 show up on a given meeting. We get to know each other, talk about our families and our lives. It is a friend’s group where all the friends have ALS (patients and often their caregivers). We have a wonderful volunteer facilitator. Occasionally she arranges for a guest speaker to talk about a topic. (ex. In home care, Hospice and palliative care, cannabis,, medicare/medicaid, etc). But most meetings have no agenda. If someone comes with a specific need ( I’m looking for Phys Therapist, I plan to get a hospital bed, what are you doing for salivation) then several in the group invariably have experience they can share. Those who can get together for the ALS walk in our area, some folks have visited others at their homes. We have an email listserv so we also communicate through that. We complain about ALS, we share tips and hacks, we laugh, sometimes we cry, we welcome new members in and say goodbye to friends who pass on. The group is a key source of practical information for me, but more importantly an important force in keeping my spirit strong.

  • Buzz

    Member
    June 11, 2024 at 3:08 pm

    My best experience with an ALS support group is attending our local in-person Watkinsville Mighty ALS Support Group! It is held in Athens, GA at the Athens-Ben Epps Airport on the 4th Monday of each month at 11:00 AM. The group is part of ALS United of Georgia.

    https://alsgeorgia.org/navigating-als/support-groups/

  • Melody

    Member
    June 11, 2024 at 4:34 pm

    I attend many webinars & support groups through CCALS – compassionate care ALS in Massachusetts. They are virtual and I learn so much. For an example on Sunday there was a webinar on Hope given by Dr.Richard Bedlack at Duke whose focus is ALS.

    My local ALS Northern Ohio organization is incredible as well!

    I feel extremely blessed.

    I find this space to be very supportive as well!

  • alexs

    Member
    June 11, 2024 at 5:48 pm

    Yes! I hang out on HealingALS.org and after our Sunday group session we breakout into breakout room and chat with other PALS who are all, like me, using natural methods to slow and halt the disease.

  • Sandy

    Member
    June 11, 2024 at 7:19 pm

    My husband, Paul, and I attended some Zoom groups together. I attended a Zoom Caregivers group. Both were once a month, which did not seem like enough. After Paul passed away, I attended the bereavement group on Zoom once a month. It wasn’t/isn’t enough time. Usually there are new attendees who are very much in need of support. I found a local grief support group that meets in person weekly and found that to meet my needs a little better, although it was not specific to ALS. The ALS Association seems to have a policy of only once a month meetings.

  • pearlyt

    Member
    June 12, 2024 at 12:17 pm

    I attend a Zoom call with MND Scotland support group once a month. Everyone is very friendly and I find it really helpful.

  • charliewren

    Member
    June 13, 2024 at 1:54 pm

    I’m a big supporter of ALS meetings. At the beginning of my ALS, I attended “in-person” meetings. However, due to the pandemic, meetings evolved to become virtual. The ALS Network has been instrumental in continuing meetings through the power of the Internet, keeping people connected, raising awareness, and answering questions about this devastating disease. I enjoy making new friends and learning revolutionary advances with ALS. Meetings are a wealth of information and a chance to find out, you’re not alone.

  • Angie161

    Member
    June 13, 2024 at 9:14 pm

    I attend an in-person caregivers support group in St. Paul, MN. We meet monthly for 75 minutes. I am so grateful for this wonderful group of people ♥️

  • Douglas M Clough

    Member
    June 18, 2024 at 3:32 pm

    I went to our eat valley support group from May 2014 until COVID 19. I only missed if I was on vacation or doing something else with the chapter or national. It almost didn’t happen because if my fear it was going to be a bunch of people crying.

    My wife and I drive to the group location and I left 3 times before actually going in. There were pregnant 8 or 9 other pALS and a couple of cALS there as well. And it wasn’t a bunch of crying people. It was encouraging and there was laughter.

    Everyone in that group have died except me. That had been a recurring theme, by thru the group I have met some of the nicest, funniest, strongest and most committed people I’ve ever known. I bought the van from the first person who died from ALS that I knew. Frosty. I still have his van. I wanted to keep it in our support group family.

    There was a good while where we had the same pALS for well over 2 years, at heart most. I have one friend who died within 6 months. But we had a ton of fun for those months! I may have forgotten names but I remember so the faces.

    I used to meet many of them for coffee or lunch. Most of us talked via text often we looked forward to the next group activity and most of us participated. We have an incredible team at our chapter back then. But once COVID hit, things changed. Or chapter still supported us but couldn’t put together group activities.

    Once things started to return to done sense of normalcy,, the staff had changed as did the support group structure. I understand that it started off centralized for a while, but it hasn’t returned to local communities in the rest and West sides of the Valley. There is more staff and they are doing more important things than meeting us in monthly, smaller, and more intimate groups.

    I wish we were meeting is local groups. I can’t drive downtown for the I’m person group and I have a Bible study when they have the virtual group. I’ve gone from attending almost all of the group meeting to only attending a handful of group meeting, virtually when it was a part of the in person group.

    I know that our ALS office separated from national asking with many other “chapters”. We have had fundraisers that raised record amounts of dough. That will help ALS Arizona grow and hopefully get super groups where the patients are instead of having the patients travel long distances.

    We had the best people in our group. Macy if the survivors and I have remained in contact.

    I would suggest going to a group to try it a few times. I was scared to go at first, but it completely changed my studies about my journey with ALS and it changed baby others.

    Doug

  • Carol

    Member
    June 18, 2024 at 6:13 pm

    I enjoyed the support groups in Minnesota. Then we moved full time to central Arizona where the zoom groups are poorly attended so I quit

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