- Jan 28, 2016
I've had ALS for a little over two years, am about to move in with parents, who are elderly, because it's getting harder and harder to live on my own. I can still do things for myself, tho wheelchair bound, but am also losing strength in my dominant hand. (Absolutely no bulbar symptoms I've noticed yet). I am terrified of being a burden on my parents and am planning to stop eating and drinking when I'm no longer able to wipe my behind. I'm scared because I'm wondering how hard that will be...I like to eat!! Also the town my parents live in is very conservative and I'm worried the hospice workers won't accept my decision. I absolutely do not want a feeding tube or ventilator, I wish I'd develop bulbar symptoms before I lose my arms, but it doesn't look like that's gonna happen. I'm wondering if there are any family of PALS who went through this with their loved one...I spend a lot of time worrying about the end. I have no drugs I can take to end it all, and I'd prefer not to do anything illegal anyway. (Also I'm not depressed, I do a lot of fun things and am trying to enjoy life as much as possible while I can. However I would love to hear how others who stopped eating and drinking fared.) Thanks! I appreciate the wisdom, compassion and practical advice on this site.