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My son died of ALS aged 29 years. He had the Bulbar sort. He lived about 5 years with ALS. I live in Bariloche, Argentina and have been widowed twice, so now I live with my cat. My surviving daughter lives next door. I also lost another son, aged 21 years, to suicide brought on by paranoid schizophrenia.  My second husband died of vascular cerebral disease, meaning dementia. That lasted 15 years. So I’ve been a carer for a great part of my  life. The result of all this caregiving for  loved ones has resulted in my having Fibromyalgia, a very painful muscular disease also related to the CNS. But I have two female friends who have ALS and they are still living with it after very many years. Their ALS has stabilized.