My husband is declining rapidly . He still does not have a final diagnosis and his movement specialist made a referral to Mayo Clinic in Minnesota. Symptoms.began just over 2 years ago with incontinence , less engagement in conversation, and falling backwards. It took several months more until family and friends also saw a difference in him.. We have tried to accommodate his needs. At this point he can no longer get up from his life chair without help, get into a stair chair lift without assistance from 2 , eat at all with his right hand and even has problems lifting a sandwich with his left. He can no longer use a spoon or fork without great difficulty. He is stiff and has a hard time getting onto a toilet and tends to sit very crooked on a chair after he plops down. He cannot get his legs up to bed, walk without assistance and then not far. Two people can get him down the 3 stairs at our home, but it is hard and takes a lot of time as he freezes. It is hard for him to grip the bars we have on Wales, and then he cannot let go. He has now become bowel incontinent. At this point he does not seem to aspirate, but his breathing can be labored . He is still here and my kind and wonderful man, the hardest park is that he says less then a dozen words a day . He is still "in there" but says he finds it hard to talk. He will sometimes shake his head. When he does speak, his voice is OK and cleaR.
Can anyone tell me if the quick decline is more common in CBD. The course of his disease seems too fast for what I have read with PSP.
Thanks to those who respond. This community has been a wealth of information and even more importantly a place for understanding and support. As you all know , it's just not a fun life.