Dad has changed so much in a week.
It looks like PSP has moved along another step. He doesn't seem himself at all and it's not just as if he's got a cold. He's finding it hard to keep his eyes open and everything is becoming a bigger task.
But we're ready to deal with it all. As hard as it's going to be.
It's like he's had a stroke.
Hi Hannah
I know what you are going through. My husband was dozing over very frequently and the task of dressing him to take him out grew more and more difficult. It takes so much patience and a very strong will to get through the day and cope with their changing moods too.
Best wishes
Lina
Hi hannah,
sorry to hear that news.It is a sad long journey we all have to complete.
Take of each other
luv Lindax
Hi Hannah,
So sorry to hear things are getting more difficult for your Dad. It maybe that he is starting a chest or urine infection so migth be worth getting a GP to take a look. The PSP nurse told me that any emotional/physical trauma or infection will make the symptoms of PSP much worse.
Take care of yourself my lovely
love
Kathy x
Hello Hannah
I agree with Kathy, get your dad's GP to take a look at him just to be on the safe side, but it sounds as though this is all to do with his PSP. As those of us who have already been along this road will know, it really is a roller-coaster of a journey. Sometimes you think your loved one is near the end maybe, but then they suddenly make a miraculous change for the better (not a recovery of course but you know what I mean). Of course your dad will gradually get worse but in most cases they tend to go downhill in plateaux stages. He will stay more or less the same for a few months with very little changes noticeable, then he will perhaps have a little hitch when he will lose a little more of his previous abilities. Then he will pick up once again - to an extent - until the next time and so on. Each time, gradually getting a little worse and never quite regaining what they had before. It very wearing on the family and carers to see this happening, but sadly there's is nothing we can really do.We just have to go with the flow and try and keep cheerful for there sake. Remember they know what is happening and they can get scared too. Sadly this is why this illness is so dreadful. It's a real bummer and certainly tests everyone's strength, patience and stamina.
Another thing I noticed, by the way. If my husband had had visitors - it may have been his doctor, a friend or one of the family - but he always seemed to make an extra effort of trying to appear as normal as possible. The effort though, I began to notice, would knock him for six for the next day or two. The sheer effort was totally exhausting for him although it didn't appear so at the time. It was as if the concentration was just too much.
Good advice too is to try and read up as much as you can about PSP in order that you can be one step ahead of what may come up in the future. At least you can be ready for each stage and you'll be ready to accept it. If you know this or that may happen it's not so alarming and you won't pass on your alarm to your dad. Try and stay strong and hang on in there. All of us know what you are going through and we all know, it's not easy is it?
Love, Maggie x
Hi Maggie,
Just wanted to say I've noticed the same thing with Mum....she really makes an effort with the people she sees once in a while and then she's exhausted the next day.
I'm always half hoping that maybe we've been given a wrong diagnosis but when you read that other people experience exactly the same, sometimes slightly random symptoms you know it can't just be coincidence.
Thanks for sharing so honestly
love Kathy x
I have to say I have the same with my mum. She is recovering from Shingles at the moment but yesterday had her sister to visit. As her sister is very dear to her and at 82 is 4 years older and cant get up to see mum very often, it was extra special. Mum made a momentous effort with speaking and today her PPS has kicked in big time and she is quite rigid and very tired. The one thing she has not done so far is go off her food but she left half a sandwich as she was exhausted. She is still on antibiotics so I am hoping for further improvements but each time she has a set back she loses the ability to feed herself for anything up to a week afterwards, even though she wants to do it herself. It's such a bumpy road.
Hi Hannah
Thinking of you and your family. Keep strong and big hugs to you all. Say hello to your dad from us.
Take care..............SuzieQ xxx
Hi Hannah
So sorry to hear your dad's not himself. Like Maggie I noticed with dad that he would put more onf an effort in when people came or when he went for an ppointment which tired him out, so he could overly tired if people have been. This also used to frustrate me as people then used to say 'oh he doesn't seem so bad'.
Dad also always went down a bit when he had a chest infection so it is good advice from the others to check with the GP. Its not easy for you or your family so please take care of yourselves
Lesley x
Hi Hannah,
It's an agonising time, I know. Our mother is in the very final stages of this most distressing of diseases. She has had no speech or movement for about a year now , can hardly eat anything and we have no idea whether she is aware of us or not. We can only assume that she is - and talk at her as not able to talk with her.We had no idea that this 'final stage' could go on so long and I know every case is different. At least there is time to say everything - it can be terrible to lose someone very quickly without the time to tell them how much you love them and have valued their presence in your life for so long.
How much worse can/will it get :( 
Dads walking has gone alot worse
Getting around - wheelchair
THEY JUST DON'T GET IT AT THE HOSPITAL
