I think the most disgusting of all this is - without big bucks, there are no treatment options open for you for end of life care, like the communication boards, or nursing assistance etc. It's criminal. Everyone deserves the right to communicate and have decent care.
My husband just passed away from ALS… tracheotomy no an option for him, he made himself a dNR.. always thought about me as I was his caretaker, and he always thought about what my life would be like if he was on a ventilator… I miss him so much!!!!!!
I have had testing done this past year to see if I have ALS I go next Monday to see if I di. I have babinski in my feet and i have 2/4 upper extermerties are asymmetry. I have swallowing problems. It srarts with a D but i dont remember how to spell it and also something is going on with my Central nerve system.
I’ve made it clear to my care team that I don’t want any ostomies of any kind and if I can no longer have meaningful conversations with the people that I love . My husband is 85 and only 3 of my 10 siblings will still communicate with me. I was a nurse for twenty five years and I don’t want to burden systems that could be beneficial to others and especially don’t want to be a burden on my husband and family. I’m okay with that.
@@timhuffmaster3588 ❤️ Awe, God Bless you! you are not a burden to your family they Love you! Gods got a plan for you ❤️🙏Life sure has alot of twist and turns. I myself feel like the biggest burden on my 3 Kids. Im getting a small apt And I am going to do what I can on my own, I have never lived alone. I have been married and had Kids ❤️🙏💜😊
I think the most disgusting of all this is - without big bucks, there are no treatment options open for you for end of life care, like the communication boards, or nursing assistance etc. It's criminal. Everyone deserves the right to communicate and have decent care.
My husband just passed away from ALS… tracheotomy no an option for him, he made himself a dNR.. always thought about me as I was his caretaker, and he always thought about what my life would be like if he was on a ventilator… I miss him so much!!!!!!
I’m so sorry. May your husband Rest In Peace 🕊 and may you eventually find peace within your heart ❤️
@@Anastashya
Thank you, Amelia. That is very kind of you.
I have had testing done this past year to see if I have ALS I go next Monday to see if I di. I have babinski in my feet and i have 2/4 upper extermerties are asymmetry. I have swallowing problems. It srarts with a D but i dont remember how to spell it and also something is going on with my Central nerve system.
You are likely referring to dysphagia. All the best.
God Bless you❤️
I’ve made it clear to my care team that I don’t want any ostomies of any kind and if I can no longer have meaningful conversations with the people that I love . My husband is 85 and only 3 of my 10 siblings will still communicate with me. I was a nurse for twenty five years and I don’t want to burden systems that could be beneficial to others and especially don’t want to be a burden on my husband and family. I’m okay with that.
@@timhuffmaster3588 ❤️ Awe, God Bless you! you are not a burden to your family they Love you! Gods got a plan for you ❤️🙏Life sure has alot of twist and turns. I myself feel like the biggest burden on my 3 Kids. Im getting a small apt And I am going to do what I can on my own, I have never lived alone. I have been married and had Kids ❤️🙏💜😊
What a cruel joke