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    Hi tallmelfitz Sorry to hear about your situation. I fully understand what you are going through because I went through the same things 2 years ago. I decided to put my dad on vent. Unfrtunately he was in no condition to intelligently give his feedback on whether he would want to live that way...
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    Dad lost the long hard battle..

    Dear Friends, With great sadness I want to share with you that my dad who had been living with ALS for 3.5 painful years has finally lost his battle 3 days ago. It was a very long and difficult last 3 years. I remember every stage of his progression from normal to comatose over 3 years. We have...
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    very fast progression

    hello jess, my father starte his symptoms and he too went from looking perfectly normal to being bed ridden in about a year. Like you, I too was very worried we might not have him for too long. THen about 1.5 years into his illness it got to a point where he needed a vent to keep breathing. then...
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    Back pain in bedridden condition

    I know there are probably million reasons to cause pain, but dad often compains about back pain especially when on side. He has been bedridden for almost a year now. Is there a chance his condition might increase his suceptibility to things like slip disc which could cause severe pain? Of...
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    does als hurt? cause sensory issues?

    I would venture to guess ALS might make person more susceptible to things that cause pain like arthritis, sprain etc. If your mucsles are weak they won't be able to "support" the joints and cartilidges as efficiently. Dad used to have aches and pains before ALS which did not change much after ALS.
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    Long term suffering from ALS

    life support HI califsand, Thanks for your reply. We did not really get much time to think about whether or not life support was a good idea and / or the long term consequences of it. I mean, who has ever seen what living on ventillator looks like untill you have to do it yourself. Sure, the...
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    Long term suffering from ALS

    Irma, So sorry to hear you story. Was your son young ? THat's terrible. I love my dad, but lets face it, he is old and lived a long fulfilling life. When time comes (and it does for everyone), we will say good bye to him with tears in our eyes but knowing that he is going to some better place...
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    Long term suffering from ALS

    I just wanted to get perspective from caregivers who have seen their patient suffering from ALS for very long time (several years). My dad is suffering for 2 years now and have been is close to total paralysis for last 6 months. Vent is only keeping his breathing going. I guess he has some...
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    trach/vent questions

    Hi Rajiv, Teej and all who are curious to hear one caregiver's side of story. My dad is living with bulbar als for 2 years now since onset of symptoms. I guess being 73, his progression was faster than usual, almost like the bulbar and limb progression was simultaneous. After about 1 and 1/2...
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    Communicating in advanced stage

    Currently Dad is close to advanced stage. He can't use his right hand whatsoever. His left hand is barely functional. Currently he just communicates by moving his fingers on the side of the bed to write one alphabet at a time. But he fear soon that may not be possible either. Needless to say...