PSP Association
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Rog

Thank you all so much for your kind words whilst Rog was so ill. Quite bizarre but the first thing I did when he was so poorly was to reach out to you all.

He came home yesterday I needed him home as the care was awful, he will not go back to his previous level but I can still transfer from bed to chair without hoist so that is good. His speech is much worse , onwards and upwards.

My niece works for the local commissioning group and she has advised me to write officially to the trust re my concerns and also to the CHC as they deal with quality and will take the issues much more seriously, just another bit of info to put in your folder!

Letter arrived today re CHC now for yearly review good news for a change!

Lots of love from a calm house!!!! Xxxxxxx

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So glad to know he is back with you and you can still manage moving him. I'm very happy for you both! Love and peace, ec

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I,agree , w ex

Lol jll

Xxxxxx

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Hi, Jill! How are you this fine fall day?

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hi yer mr and mrs e#cedar

hows it going ok I hope my fingers have certainly been busy today matey well I'm supposed to go into hospital for carpell tunnell to my left hand this time on the 14th of dec then in a respite home the same one s before they said that they have a bed ready for me ======worst luck they are all old people in there and im sorry to say it but some have lost their marbles 1 w eek should be long enough for m,e or else I might come out worse than i went in if that is possible well you two cedars I wi.ll say see yer. take care henry life is short enough as it is Peter jones q.l.d. australia

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hi jill hows it going had any good falls lately peter jones q.l.d .australia

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Oh Julie, I am really pleased. I was beginning to worry, as we hadn't heard from you for a few days.

PSP does like these extra little illnesses, doesn't it. Each time S goes into hospital, he never comes out the same.

I have just bought S a magnetic board with coloured letters. His writing is now completely gone. Has been able to write large letters on a board, well enough for me to understand, until recently. Not sure it's working, just used it for the first time and I got "Burn each rats tail" Any ideas??? Might be some use to Rog though. I think you have to try everything available, to be able to keep that tiny bit of communication going. S hasn't been able to speak for a long time now.

Glad you are both OK, make sure you stay well rested, these first few days at home, can be hell!!!

Lots of love

Heady

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Can S see the letters? I don't know if F could? But the he might like burnt rats tails on toast if he could spell it!!

Lots of love xxxx

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I am pretty certain, that S can still see reasonable well, but I suppose that might be what is wrong. Better check in the morning.

Lots of love

Heady

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Charles has a "go talk" board since he can't speak. It's been wonderful and he uses it a great deal.

The Ffnny part is that I recorded the words and sayings so I'm talking to myself essentially! Thought you'd enjoy that laugh.

Cuttercat

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hi cuttercat whats a go talk board look like matey I used to be able to talk under water but its slowing down now and you do get fed up with people saying WHAT DID HE SAY #### THANKS IN ADVANCE.. peter jones q.l.d. Australia psp bloke

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It's very simple. A lightweight flat board 8" by 11" with squares. Approx twenty. You or someone puts a picture in each one and records what it says, for instance "nice to see you", OK, Hello, Yes, No, I'm hungry, thirsty, want to watch football, etc.

We tried many other ways for Charles to "talk" but this has helped him so much. It's so easy and I know you will like it.

There are 5 channels and photo cards, so you can have plenty of conversations.

Cuttercat

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Wonderful to hear that Rog is back home again !! Have a happy , peaceful and healthy holiday season !

Best wishes, Elise

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Julie I am glad Rog is home, he will get better care at home, sending you both a big hug, welcome home Rog xxxxx

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i agree y

loljill

xxxxx

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Julie glad he's home, have been thinking of you, it's such a tough road xx

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What a relief to feel you can care for him again. Good news. Hope he improves now he is on home turf !!!

Love, Jean x

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So glad Rog is home with you. I have learned that poor care can happen anywhere in the world. I'm sorry you experienced it. Love to you and Rog, Mary B.

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I am so glad you are able to have him home again. Keep up the good fight. Get all the help you can. Those of us who are able must fight to keep and increase these services. Sorry you had to go through this hard time. Is it not incredible how grateful and euphoric one can feel when a crisis let's up even for a little while ? God bless you both.

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hi

you are sooo right! once calm descends you feel quite manic must be a reason.

enjoy your day

julie xx

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