Hi, has anyone had a friend/ family member/ patient with this? My dad is suffering. He can no longer speak, blink, swallow ( has peg feed) focus or move gaze. He cannot move much except for a thumbs up/ down signal which is how we try to communicate. He chokes on his own secretions a lot. He is in pain- we try to keep it under control for him- but is hard when communication is so limited. We believe his cognitive ability is still there. But again- how'd you really know for sure? He sleeps a lot.
I would really appreciate speaking to some one who knows something of this disease. I know he won't get better. I know. But I want to know what might happen next. I don't want to loose him- but I don't want him to suffer either.
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Life-limiting illness
Progressive subranuclear palsy
3 replies
Spottyparrot99 · 10/09/2017 18:08
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