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How do you connect with others in the ALS community?
In Kristin Neva’s recent column, she describes how as a caregiver for her husband who has ALS, she tried several options to connect with others in her same situation. She participates in many online groups but didn’t find anyone her age or who was also raising small children. So, she started a new one for spousal caregivers with young children.
You can read the column here: https://alsnewstoday.com/columns/connections-provide-sense-belonging-life-als/
What are your experiences with ALS support groups? Do you participate in any online social media groups? What would be the perfect group for you, if you could find it – – or create it?
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5 Replies
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I’m curious to know our member’s thoughts and experiences: What are your experiences with ALS support groups? Do you participate in any online social media groups? What would be the perfect group for you, if you could find it – – or create it?
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Our local ALS society hosts four zoom groups each month, two each for Pals and Cals. I have found the group to be incredibly helpful. I’ve gotten lots of information and tips about equipment and a great deal of emotional support. The size of the group varies but there is a group of regulars who I’ve become good friends with. This month we are going to add an in-person meeting. Our zoom group allows people outside of Calgary to join in from their homes, which they really appreciate.
I’ve also joined two Facebook groups. I learned about Billy shoes from one of these and have gotten other useful ideas as well.
I’ve been very thankful to have these outlets to connect with others who are dealing with this difficult journey we are on.
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I don’t except for the Facebook groups and of course I don’t even know if they are real people. I’ve tried ALSA support groups; back when I could speak they were so so. I was diagnosed during the peak of covid so we were on zoom and since I can’t speak there is little point to participating. Plus the topic of preparing for death is taboo in the support group.
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I participate in several Zoom support groups. One is hosted by the ALS Association and two are hosted by Inheritance of Hope. I have made several close friends and we stay in touch outside the meetings. We are free to discuss anything in our meetings. I would be lost without them.
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It sounds like pALS either love or hate the support groups (online or in person). My experience is that it all depends on the group’s leader – – some are innovative and enjoy bringing in interesting topics and speakers. Others just follow a template year after year.
I wrote about my thoughts here: https://alsnewstoday.com/columns/als-support-group-savvy-my-speaking-experiences/
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