PSP Association

I'm here at last!

Hi everyone,

Sorry I haven't posted or replied to anyone for a long time but my internet has been down for a month and it has taken this long to sort it! Needless to say I now have a supersonic, very fast connection so I will be able to keep in touch with you all again!

Hope you are all ok and coping with everything, I am just about, still have good and bad days though but that's something I am slowly getting used to. Keith isn't too bad at the moment he is going through a fairly settled stage, he's not had any bad falls, but that is mainly due to the fact that I follow him everywhere!

I have been catching up on all your recent posts and when I read all the ones about pee and poo problems they certainly rang true to our situation, I seem to spend most of my life shuttling backwards and forwards to the loo and the rest on my hands and knees with a scrubbing brush, cleaning solution and carpet cleaner, oh the joys of this awful PSP and how degrading for the poor sufferer, how I wish I could do something about it!

We do get a lot of help now though but only because I have pushed for it. Keith still doesn't want to go to the hospice again and if he's unhappy about it I've decided not to push him. Instead we get a sitter for three hours every week who pushes him out in his wheelchair if the weather is fit, the caring team (who look after him in the morning and get him ready for bed at night) have given us some free sitting hours and are coming on Friday afternoon for five hours so I can take my mum out shopping for the afternoon. Keith's brother has also offered to come up once a week for a few hours and take him out so I am getting a little normality back in my life at last and feel slightly recharged for the challenges ahead.

We have also managed a holiday!

Decided that now was the best time to do it while Keith is still able, we have been to the lovely island of Menorca and stayed in a private villa with its own swimming pool, only managed to get him in the pool once though, very scary as it had three steps down to it and no rails! Our son came with us, I wouldn't have attempted it on my own, he stood one side and I the other and we walked him in!

My son promised me I would be able to have a complete rest and guess what, I only had one cup of tea in bed which I was really looking forward to, how sad that you can get so excited about a flipping cup of tea!

We also had all the help available at both airports and I was very impressed!

Keith only had one fall, off the loo of course, but only sustained a small cut to his cheek (on his face!) which reminds me I have just had to stop writing and go on yet another pee and poo visit! Happy days!

I have missed chatting to you all very much and am so glad I have got my magic machine working again!

Much love to you all....Pat....xx

7 Replies

Hi Pat, welcome back, you seem in a better frame of mind, glad you have got some help, and are able to get out a bit. Trying to get George to go away in September with the three children, which would be lovely just the 5 of us, but he says he does not want to go. I am feeling very selfish because I have told him that we will still go and get someone in to stay with him, I need to get away and it is only for 6 days.

Did you find travel insurance difficult to get? I an hoping he will come.

We once again welcome back Yvonne xxxxxxx


Hi Yvonne,

Good to hear from you, we got our insurance through The Royal Bank of Scotland and it's available through their Royalties Gold account.

I phoned them up to tell them about Keith's PSP and at first they said we wouldn't need any extra cover as Keith wasn't taking any medication at the time!

But I phoned them again when the doctor prescribed some mouth drops as I thought that couldn't be right as Keith had one if his early falls whilst on holiday and had to be taken overnight to hospital! (We didn't even make it to our apartment we had only just arrived!)

I think it cost about £60 extra which I thought wasn't too bad considering the risk factor!

Luckily we didn't have any accidents as we were ultra careful!

Take care and again good to hear from you!

Much love and hugs....Pat....xx


greetings Pat, I've been here about a month...B and I were just looking at our points and saw that we may afford a flight to his parents.I told him that he was going pd!...

he could choose the time....he thinks Christmas....we'll see.

Anyway again welcome back. always good to have a new point of view or another shoulder to cry on!



i agree with what has been said above\

welcome back to the site APAT and long may you be with us!

lol Jill



Hang in there Pat. I'm back at home today after knee surgery which could be delayed no longer. Sandra, at home in a hospital bed, (presumed CBD) since April 2014, has live in care for the next five weeks. What a boon.


Welcome Back Pat. A whole month without this support, how did you manage?

Glad to hear you got away on holiday. A few days in the sun, away from this cold wind we are experiencing at the moment!!! The help at airports is amazing isn't it? Surprised they don't offer it to first class passengers. You don't have to worry about anything, so much more relaxing, than the normal rough and scrum of the departure lounge. Also, that you have some help put in place. I am still struggling. Crossroads came to see me, promised the earth, did give me £500 to join our local gym, but nobody has come forward yet to give me the time off to go!!! No doubt, that's another fight! Hey ho!

Day off today, so much rush and finish getting S ready to go to the hospice!

Lots of love



Hi Pat, pleased you are back. I was frustrated when I was without the internet for a day, I don't think I'd cope without it for a month.

It's good things seem more settled for you now and brilliant you managed a holiday. We did last year but can't any more. Do what you can, while you can.

Long may this settled state last.



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