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This disease takes so much. You should always be able to make your own choices.....

Neil, Steve couldnt breathe without his trilogy on. He couldnt wear it when he walked because he couldnt lift it. So when he fell and couldnt get up that was it. He was alone at the time although he knew someone would be arriving with a few minutes.

Steve said his goodbyes to us that week. He knew where things were headed and he didnt want to go there. He died making his own choices, his own way. For that I am grateful and glad for him.

It was a lovely gift.
 
I believe choosing to not use a machine to help you breathe any longer is your choice, not suicide at all.

If when the assisted device was removed and you were able to continue to breathe, you would do just that.

ALS has taken your ability to breathe, not you.

Peace be with you Neil
 
Neil,

Please be at peace. You are asking tough questions, good questions. This is the toughest thing I can think of to have to go through. There is no way to fight this disease other than to be true to those we love. Do what is right for you. You are an excellent example of an intelligent man to all of us who are going through this.

Thank you, Peter
 
This disease takes so much. You should always be able to make your own choices.....

Neil, Steve couldnt breathe without his trilogy on. He couldnt wear it when he walked because he couldnt lift it. So when he fell and couldnt get up that was it. He was alone at the time although he knew someone would be arriving with a few minutes.

Steve said his goodbyes to us that week. He knew where things were headed and he didnt want to go there. He died making his own choices, his own way. For that I am grateful and glad for him.

It was a lovely gift.

Steph,

I hope to be as brave and caring as your husband.

-Peter
 
Dear Neil,

From someone who is a born-again, Evangelical Christian, it is NOT suicide. It is simply a choice to not artificially prolong a life. So if this is a religious concern, I think anyone you ask who truly claims to understand theology, you'll get the same answer.

Love and peace to you.
 
Thank you Kim. My question was partly religious, although I have not been very religious most of my life. Dying has a way of changing things. I hope there is something after. I have enough to answer for in my life, I didn't want to leave this earth committing a sin.

Neil
 
Dear Neil,

I'm sending you a personal message.
 
Neil,

I think everyone has agreed pretty clearly that ending suffering in a terminal, incurable condition is not considered a sin. From my secular standpoint, the major concern for survivors is addressed with duly signed, notarized copies of your State or province's power of health care attorney and advance directive at the bedside.

If/when anyone has made the determination to withdraw life-sustaining BiPAP, I would recommend:

1) BiPAP set on pressure control (IPAP/EPAP at fixed levels) with a backup rate but not volume control (AVAPS, PS, iVAPS)

2) Morphine to comfort [at the end of life, needn't measure doses]

3) A gradual IPAP decrease

4) When breathing is only because of the backup rate (i.e. the machine is triggering each breath, which can be seen on the screen) and the person is not conscious, then removing the mask will not be distressing and the passage can be peaceful.

Shalom.

--Laurie
 
Neil, my thoughts and prayers are with you. You are choosing to let your body to do what it will naturally. Not using medical devices of an kind cannot be suicide. Steve is never going to make it with assisted devices and has been progressing and we all know that it's all about his dignity and mental anguish. I cannot see why it could ever be considered suicide as far as religion. Allowing yourself to move on is a fearless and very personal choice and I am positive after reading your post that you will move on and you won't be making any bad decision.

I am sorry you are going through this emotional, cruel and painful disease.
 
It's not suicide. It's taking control of your own health needs. And I think God would understand that.

Patrick
 
Neil you have a beautiful soul.
 
Neil, you give me courage, you give us all courage! Love ya chally
 
I was in a rush when I answered this question so I wanted to add something, I think that even if it were considered suicide I truly believe that everyone who is suffering while dying should be able to choose death whether it be by denying medical care which is legal or by taking something to bring on death which is only legal in some states and kind of screws ALS patients over because they have to be able to take the medication themselves and usually in the time frame it is allowed to happen an ALS patient is no longer able.

You are suffering from a disease that has no hope right now of a cure, if you decide that you don't want to keep on with it then I don't think anyone should blame you for that and I don't think you should put any guilt on yourself for it.
 
I have pondered this question many times as I sit here with living with ALS slowly but steadily progressing. I have indicated to my family that my red line is no trache, and if and when I reach the point, that I need artificially assisted breathing, beyond oxygen and BiPap, to allow me to leave this world with dignity.

My Mom had FTD during the last 11 years of her life, and her nursing home kept her shell of a body ravaged by dementia alive with medications and forced feeding (often against her will) and I feel certain if she would have been able to convey her choice, she would have refused the forced feeding especially the last few years of her life. IMO, Her soul (as we knew it) left her body a half decade before her physical body succumbed to her disease.

I been giving a lot of thought to what may transpire toward the end of my life and I am in the process of organizing a living will to the end of life to what I will allow and not allow. I know some of my choices may hurt some of my family members as I do not want to be prolonged in the suffering part of this disease just to say I live another day. In Canada, our parliament has been wresting with legislation on doctor assisted suicide. Fast Facts About Bill C-384 | Council of Canadians with Disabilities

From my perspective, refusing a trache or even a BiPap for assisted breathing is the choice of the patient, and it is the disease that is fatal, not the choices one makes with trying to stay alive while coping with the disease.
 
I met with my priest, (catholic ), we discussed death with dignity, which they don't condone. They accept and
A person's wish not to stay alive with mechanical intervention. It's all so personal. I'm with you, that matter
what my choice is, God will understand. Peace be with you my friend. :)
 
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