Hi everyone, my sister is one year into this disease and unable to move completely. Voice is gone, eats fAirly well. Some trouble with swallowing water and liquids. Having more trouble moving food around in her mouth lately, losing her tongue.. .
We brought hospice in back in sept. She has decided against a peg or bipap. Doesn't want anything. The last time she was checked (in July) her breathing went from 73 to 62 in one month.
She sleeps for a good part of most days. I guess that's my question, I know I'm rambling. Just sad. Is the sleepiness part of the end disease? An indicator of the air trapped in the lungs ?
I've read people's posts here and am inspired by your courage. My sisters quality of life is awful, everything is hard for her, everything.....
We brought hospice in back in sept. She has decided against a peg or bipap. Doesn't want anything. The last time she was checked (in July) her breathing went from 73 to 62 in one month.
She sleeps for a good part of most days. I guess that's my question, I know I'm rambling. Just sad. Is the sleepiness part of the end disease? An indicator of the air trapped in the lungs ?
I've read people's posts here and am inspired by your courage. My sisters quality of life is awful, everything is hard for her, everything.....