ALS

[concretejungle]

My father was diagnosed with ALS fairly recently and it seems to be progressing quickly. He was recently told that it's moved into his lungs.

Anyone here familiar with it or that have or do have family members suffering with any ideas, treatments (stuff to try at home) or support would be much appreciated.

[GoldMember]

Sorry to hear that. ALS is a very difficult condition, both for the person affected and their support network. I don't have anyone in my family who has it but Steve Gleason, former New Orleans Saints player is from Spokane and has suffered with it for several years now. With that, I've had some interest in following his situation. He has a pretty good website that has good information and links that may help. Best wishes to you and your family. http://www.teamgleason.org/

[Dantheman]

Do you live in a state with a "Death with Dignity" law? I saw an interview a while back with a woman who moved to Oregon after her ALS diagnosis. According to her, eventually she would end up fully cognizant but able to do nothing but blink and wanted the option to go out on her terms if she wanted. I think I'd want the same for myself if faced with that frightening prospect.

[Meadow Skipper]

I'm no help, other than the usual "sending good vibes" but I have to say it sure is hard to read threads like this and the "fuck cancer" one. Fuck ALS. I'd help if I could.

[concretejungle]

Thanks for the link GoldMember. I remember hearing about him but at the time I knew very little about ALS. I still know very little other than my experience with my father. There are support sites but most are for the person with ALS.

It's very difficult to watch a man who has been active his entire life be debilitated by this. Recently it has spread to his lungs and he's discussed what that means in terms of being hooked to a machine. He lives in a "death with dignity" state and he and I (I believe the rest of our family as well) are very thankful for that. He has been practicing Buddhism for many years and although it's helped him be ok with the diagnosis I know it's hard for him since he's not that old and his progression has been rather rapid.

It's a shitty disease no matter what but other than the ice bucket thing to raise awareness it doesn't seem like there is much progress in fighting it.

[old goat]

I'm really sorry to hear of your father's condition. Having your breathing fail is very frightening and extremely uncomfortable. If your father doesn't want to go on a respirator--I certainly wouldn't but that just applies to me--when his breathing gets too bad an opioid like morphine can ease the air hunger, even when it's given in doses too small to cause death by itself. At that point death is usually not too far off as pneumonia develops and organs are starved for oxygen. The morphine can make death from respiratory failure bearable. I think the decision making that will eventually come up is as hard or harder than the physical effects of the disease--and I think these decisions are harder on the family than on the patient. If it all possible your father should make his wishes clear and make all the decisions he has to make before he loses the capacity to make them himself and his loved ones are forced to make them for him. That is a very heavy burden. At the same time I think it is important for the family to accept and support the patient's decisions.
I hope these thoughts are premature and that you still have some good time left with him. I'm sorry I don't have any advice about specific treatments. Best wishes.

[Shredhead]

My sister died from ALS. It's an insidious disease.
She was beautiful, intelligent and had a lust for life.
My brother in law stood tall and took care of her till the bitter end.
Vibes to your dad.

[Danno]

It's a nasty awful disease. Father of a good friend died a few years back, watched him waste away before my eyes. Peace and strength to your dad, you, and your family.