Shit V. That's awful, absolutely awful. What a nightmare for all concerned.

No, you're right, it won't be 'ok'. But saying it is just a way of trying to help and comfort. Don't be hard on yourself for wanting to help and give comfort, V, it's who you are. Everything's heightened, the little phrases that slip from our mouths unbidden in times like that, aren't always right for that exact circumstance. A thousand other times those words will be the right thing to say, rather than just the instinctive thing *smiles*

Of course it won't, not immediately anyway, but that's what you're supposed to say. And like any of life's tragedies, we adapt, and move on.

Wow. I am a twin, also, so this hits me double. And genetically vicious diseases are, at this point, impossible to defend against. Yes, there is one in our family, also. Cards, photos, and recordings were one way distant family members were able to remind our ailing beloveds that they were being held in thoughts. Perhaps son could do that? I'm sorry for this sorrow. Keep in touch.

An update:

M had a doctor's appointment yesterday. It was very grim. The doctor prefaced his remarks by saying it was going to be an unpleasant conversation, and gave people the chance to leave the room. No one did. He was right.

M has been in a wheelchair for a couple months now, but her breathing is no longer strong enough for the CPAP machine to help her, so a trache tube has been suggested. Likewise, her swallowing ability is very weak so a feeding tube has also been suggested. Darkest of all, the doctor said a decision on these items, and hospice care needed to be made this week. Hospice care?!? ffs.

Tink's taking tomorrow off to go to see M, just hang out, a little sister time. I've asked Tink to send along my love. I'll forward all your support and best wishes in the same psychic package.

Same advice as earlier, If you can, contact the ALS foundation ( www.alsa.org ). They have good people working for them and can put you in contact with support groups and any equipment supplies you may need and advice on home aides, etc.

I'll keep you all in my good thoughts and prayers.

V this disease can progress at varying rates with different people. My FIL died about two days after we were told to contact hospice. (He was living with us) He was able to breath, didn't like the cpap, and had had a feeding tube for a couple of months. It could be two months or it could be two days.

I'm sorry to hear the news. Take Sheldon's advice and call the ALS people.

She made today's paper.
Though the disease is ravaging her body, her spirit remains unbowed.@Sheldonrs and footfootfoot, we (they) have been in contact with the ALS Foundation for a long while. Sorry I hadn't made that clear from the op. I thank you all for your support. It makes a difference, even though you may not see it.

No problem. I just wasn't sure if you'd seen the 1st post. *HUGS*

Thank you.

Holy wow. Why didn't I see this thread before? Give Tink and M my healing thoughts too. (Full plate, huh?)

Send along the Fobble family's best wishes too, V. I hope Tink and the rest of her extended family are holding up well.

The support from all of you is a welcome blessing and I thank you sincerely. I also send along grateful thanks from Tink.

M will be having surgery on Monday. She's having an operation to help her breathe, a tube (tracheotomy?), and Tink says the doctor's description was very scary about how M's body must adapt to this new breathing regimen, or else. She's very weak, and Tink fears that M may not survive the surgery.

Goddammit. I've been sitting on this news for hours. I don't know how to communicate to all of you the crushing fear and sadness that comes with helplessly watching a loved one suffer. Please let me be clear, this is in no way a poor me situation. I love Tink. I love M. I love her husband and their children. I love her father, my father-in-law. They are all suffering and all I can do is watch.

If it were for a larger purpose I could rationalize away the pain. If my child were suffering but there was a lesson to be learned cemented by the pain, I could watch that. I could watch that knowing that the suffering I witness was like the smoke and sizzle of a branding--elements that accompany the introduction of an important lesson, one that literally leaves a mark.

But what is the lesson of ALS? You have bad luck in the genetic lottery, you suck? Yeah. That's instructive. I am lost, and they are lost.

My thoughts and prayers go out to you V. I know what you are going through is a difficult one? I have been there. You have no control. Best wishes to all.

:( sorry V - I feel your helplessness and know all to well the feelings you are experiencing. If there is anything...

All of y'all are in my thoughts, V. I lost a grandparent to this. :(