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The ALS Support Group is for patient and families. It is a peer group where people can share their tips for living with ALS and discuss coping strategies.
Meets monthly on the 3rd Monday of the month from 2pm to 3pm EST through Zoom.
Contact: Neuroscience Social Work at 904-953-0332 to be added to the group.
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Decades of loving & sharing life with an exceptional couple, dear friends, part of my small, chosen, extended family - changed when, mid-2021, he was diagnosed with ALS.
September 2022, her neuropathy, after two bouts of cancer, caused her fatal fall - outside - hitting her head on a rock, and bleeding to death before medical help could arrive at the remote location of their lovely retirement home.
They were a beautiful example of 50+ years of a solid, successful marriage - her being a talented graphic designer, him being an engineer-minded geologist - Master Naturalists sharing a passion for and involvement in nature.
He doesn't have the time or energy to keep me informed. Over the months communications to him have become primarily unanswered. Phone calls are not an option, his slurred speech was their first indication of a serious health problem.
As of this summer I now live only ~1 hour away from their home. I don't know how I can help him or how I can be kept informed.
Any words of wisdom, any suggestions, would be greatly appreciated. Thank you. Ellen