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New member
Apr 22, 2005
Hi there,
My brother was just recently diagnosed with ALS. He also has a spinal cord injury, so has been disabled for a long time now, and it's possible the symptoms were masked by his other medical problems. He has listed me as his healthcare proxy... originally, in his previous living will, he had said he wanted not to be kept alive with artificial means, but now that he has been diagnosed, he now says that he wants to be kept alive as long as possibly just as long as he doesn't experience pain.
My question is, what can we expect in terms of specifics as this disease progresses? Will he have pain? What is life like when this disease progresses to its fullest extent? Can someone be kept alive indefinitely with a respirator and feeding tube, or will this person be in too much pain? Also, we live in the USA and I don't know what the quality of care will be for him. He currently lives at home, but maybe he will wind up in a nursing home. He may be kept alive, but would he be able to find a way to communicate, and even if he could, would anyone be listening who could get him what he wants?
Hi Heather,

I can only speak to my experience-no, there is no pain. You do have muscle cramps, but they subside.
The only pain I feel is emotional. Some days I hate the fact that I can’t throw the ball to my son or tuck my daughter into bed, but like the cramps, it subsides.

Communication will not be a problem! There are many different ways and means to allow one to be heard. I have PALS friend who cannot move or speak- yet, through other means, she runs her household including hiring and firing healthcare workers or maids etc. A little ingenuity and fortitude will go a long way.

The progression of ALS is different for all. I know some who progress quite rapidly and others, like Stephen Hawking for example, who have had it for (I believe) 40 years. Your brother may never need a respirator, though being prepared is always wise.
I’m not familiar with feeding tubes but I’m sure another forum member will fill you in.

I hope things work out for your brother, Heather. Having a sister like you is tremendous for him! Stay in touch, eh!

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