bulbar onset diagnosed 8/2024, has anyone passed away when they could still walk and use their arms?

[dianej]

I want to end it as soon as I start loosing my ability to get around on my own. I live along no family alive, My worst fear is to be bed bound and not beable to communicate with anyone. I have bulbar and cannot talk now. my plan is once I start loosing my ability to walk or use my arms I'm going to have my feeding tube removed and go into hospice and have them end my life as soon as they can, if it means starving or not being able to breath, bring it on I'm ready to go, life sucks with als, in death there is no pain or worry, wish I could go today. everyone is going to die.

 

[Nikki J]

It wasn’t in the US but one of my relatives had their tube “ fall out” refused reinsertion and went to inpatient hospice. They were medicated for comfort and died fairly quickly and peacefully.

Please consider at least a consult with palliative care. I think you might want to continue with them if you find a good one. I had a palliative care visit early on. They were very willing to meet me where I was and would have addressed both emotional and physical concerns. I didn’t need anything and it was left with let me know when you want to see me again