Just wanted to say hello and introduce myself and give a bit of background, I apologise for the long post!! My father was diagnosed with CBD a month ago and we as a family are still trying to get our head around it.
My father's speech has been slowly getting worse over the last 3 years (slurred). My children have had trouble understanding him for 3-4 years and stopped being able to understand him for 2 years. I told my mum and we just put it down to him getting lazy! I then had real trouble understanding him a year ago and said to my mum that she needs to take him to the doctors. I thought he may have been having small strokes and was worried that a big one was on it's way but he didn't go to the doctors.
He is a window cleaner and he had a couple of falls off the ladder over the last 2 years, with a nasty fall in February this year where he had to have stiches in his head! The staff at the local A&E noticed his speech and said we need to take him to his doctors. More urging to my mum but he still didn't go. We had noticed that he was running the window cleaning round down and people were ringing asking where he was as they hadn't seen him for a while. People who hadn't seen him for a while were asking if he had had a stroke, but still no doctors.
Finally my mum took him and the next day he was in hospital having CT scans. It was a real shock when we took him in as he done very badly on the co-ordination tests, memory tests (he didn't know who the queen was, what year it was, if it was day or night!!). This really knocked us as we didn't realise it was this bad. He was in hospital for two weeks after which they diagnosed CBD. They were amazed that he had been working up to the day before he went into hospital and I would hate to think how hard he had been trying to be 'normal'. My mum commented on how quickly he had gone down hill, but I said that I think we are now seeing him how he really has been, but he had been hiding it. He told mum that he fell over the stairs one night and woke up in a pile!!
He has now given up work mum is looking after him, although she goes back to work next week. She works nights, so my sisters and I will sleep the nights she works to be there. He gets very upset if he thinks he has to be on his own.
His is not sleeping very well at night and is usually awake and up around 4.00am and then very tired in the day. We have noticed that his speech, balance etc is much worse when tired. He resists sleeping in the day as he thinks he then won't sleep at night. I have tried to explain that I think if he has a structed hours sleep in the day, it may be better for him. Have others found this?
Also, my mum has noticed in the last two weeks that every 20-30 mins he starts coughing a lot as if trying to clear this throat. Could this be the start of the swalling issues we will face. I saw him doing this last week and it's as if he suddenly notices he has a build up in his throat, but can't swallow it and has to cough first to clear his throat and then swallow. He has no trouble eating at the moment though. He is having stiffness/cramp in his right leg a lot and mum said it gave way when he got out of bed the other day and he fell.
I have read quite a bit on CBD and it is frightening on what is to come and having not idea the timescale of things. It will happen when it happens I suppose.
Thank you so much for taking the time to read this very LONG post, it's just good to write it down and speak to people who know what we are going through and what we have to face.