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Are you a part of any ALS support groups?
ALS support groups are valuable for sharing vital information and giving the needed support to patients and family caregivers. These support groups are plentiful in the US, but our forum members live worldwide and often don’t have access to a support group.
Another example is my own, I live in a part of the US that is 20 miles from the nearest in-person ALS support group, so I don’t attend. But they do host an online group as well, that I occasionally drop into.
Do you attend an ALS support group? Is it in-person or online? Has the group been of help to you? If you live in a country that doesn’t have support groups, does this forum serve as your “support group?” Do you attend any online groups?
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I joined the in-person caregiver group the week after my husband’s dX in Jan 2020—it was in the small town where I lived so super convenient! Then COVID hit and the group was switched to online Zoom which I think has worked well. We are still doing the Zoom call once a month and participants are from close-by surrounding counties and the group is growing. I attend most of the time. We share the difficult stuff and share advice and resources. Because we are basically a local group many resources are often local as well i.e. contractors, places to go that are accessible (like the accessible trail on Mt Tamalpais), restaurants, etc. I also get newsletters, updates and participate in webinars and seminars from IAmALS (https://iamals.org/), Everything ALS (https://www.everythingals.org/) , the Healey Center at Mass General (https://www.massgeneral.org/neurology/als), Les Turner ALS Foundation (https://lesturnerals.org/) and stay connected locally with info from my local ALS Association Chapter (http://webgw.alsa.org/site/PageServer?pagename=GW_homepage) I’m probably leaving one or two out.
Granted, as a caregiver, I can’t spend all day reading, watching and listening so I pick and choose from the vast menu and share with my husband as appropriate. All the incoming info can seem daunting at times, but I’m grateful to have it!
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