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PSP Association

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We are home from our lovely stay in Norfolk, so relaxing, a few accidents, but nothing major. Our son was amazing, our daughter was amazing, she helped us get down to Norfolk, before she went home and Peter arrived, got sent out on Tuesday told to go out, and have some time for myself. Peter our son was so good with George he saw for himself how George had declined., the coughing and choking was horrible, Pete was frightened to see his dad choking.

We had a really lovely break lovely holiday barn, felt like as a family we could spend some quality time.

Last night George was very agitated up most of the night, welcomed us back to the really world of PSP!!!!!!! We have all come home tired but happy, ready to fight another day. Love to you all Yvonne xxxxx

54 Replies

Hi Yvonne

So please that you all have had a brilliant holiday and you all relaxed

Sue x

It was lovely xxx

Glad to hear you all had a lovely time. Times like these, give you the strength to carry on. Hope you are planning the next trip away.

Lots of love


Thinking about it Anne, hope you are ok? Think about you often xxx

Surviving Yvonne, surviving!

Lots of love


Oh Anne not looking forward to george passing away, just feel so sad when I look at him, but PSP is so cruel. Big hugs Anne xxxx

Yvonne, worry about today! Tomorrow will be here soon enough and I promise, it's NOT worth waiting for.

Lots of love


I can feel your pain Anne, sending you a big hug, xxxxx

abirke in reply to Heady

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. ... So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’. ... Therefore do not worry about tomorrow, for tomorrow will worry about itself.

Matthew 6:34

No better words than what you and the Bible has to say about worry.....so AMEN, Anne, Amen



So glad you had such a good time as a family. It brings you all closer to see the reality.

Love from Jean xx

So right Jean, how's things your end? Xxxx

Not good. Chris won't open his mouth to eat. He chokes a lot. You know how distressing it is. xxxx

It is so distressing when they start choking Jean, George takes ages to eat, really hate PSP. Yvonne xxxx

abirke in reply to doglington

Peg tube?

doglington in reply to abirke

He decided long ago to not have one.

George also decided long ago he didn't want a peg xxxx

abirke in reply to doglington

Me too Chris and George ......I support you and your wifes' decisions...



Andrea I would not want a peg myself, xxxx

Yvonne I'm so happy you all enjoyed yourselves, family time makes many precious memories....

Love and hugs to you all....Pat xx

Pat always thinking about you, hope you are ok, and getting out a bit xxxx sending you a big hug . Yvonne xxxx

I'm not too bad thanks Yvonne but we've had another tragedy in the family, my sisters 62 year old husband passed away suddenly 11 days ago, he had been poorly for quite a while but it was totally unexpected! She's in a mess as you can imagine , I'm dreading the funeral, she's been such a great support to me and I only hope I can be the same for her. To top it all my 88 year old Dad has been immobile and housebound for the past 5 weeks, he's very demanding so that has been a strain for me as well!

Sorry I'm moaning but I get so stressed out with it all!😩xx

Oh, Pat. Sorry you have so much on your plate. It is stressful for you. Love from Jean xx

Thank you Jean, how are you? xx

Hanging in there !!! xx

vlh4444 in reply to doglington

Do hope you are managing OK Jean. My love to you both.

Vicki x

Oh Pat sorry to hear that you are dealing with so much at the moment, I am sure you will be a rock for your sister, wish I could just pick you up and whisk you away. Big hugs Yvonne xx x

So do I Yvonne, so do I, just feel like disappearing! xx

Wish I could give you a big hug, you have been through so much xxxx


abirke in reply to Patriciapmr

Don't you be sorry, too many hard events.....again get some rest Pat

So pleased you coped so well Well done. Xxx GW

Yes thanks to all the help, it was hard work, at home you have a routine, going away is harder, but it was ok . Yvonne xxx

How wonderful that you were able to get away, and to have some help with your hubby. Sounds like your family had to face some tough realities, but were able to help you and George enjoy yourselves.

Yes so true xxx

Well done to you all! I’m pleased you were able to ‘all’ make some wonderful memories Yvonne!! Hugs x

Amanda hope your mum and dad are ok? Sending you a big hug lovely lady xxxx

It’s just ongoing Yvonne, an ongoing struggle! But of course My darling you know that! X

Yes Amanda something different every day xxxx

Sounds like you all had a wonderful rewarding time together..... XXX

We all did thank you xx.

So pleased you had a good time Yvonne.

Vicki x

Thank you Vicki it was very peaceful xxxx

West Virginia ? sorry I bet I knew that....got to get a hold of Ketchupman....living sometimes out that way....Is it as beautiful as I imagine.....it has pines ? Arkansas is mostly deciduous....leafy trees....Miss my Pines of (true ) Northern California oh well back to topic

God bless your children...nothing better than happy even if it comes with reality....

I love your kitchen and the man in it is beautiful too .....

Get some rest


Andrea .... AVB

Thank you Andrea xxxx


So glad you had a break, was the àccomodation mobility friendly? If so i would be interested iñ details


It had a few steps but easy enough to get the wheelchair in, we had to give George a bed bath, there was a shower but glass panel we thought to dangerous to attempt getting him in there. Xxxxx

I'm still clinging to the hope we might get away together but realistically now what with hospital bed ,continence issues ,catheter unpredictability and the list goes on and on ! I think i have to accept, no regrets mind we have travelled the world and had wonderful times.


Yes Julie felt the same we managed to do everything it was hard, George has a catheter, took a good quality mattress protector, are retirement was going to be traveling and doing what we wanted to do, George really wanted to go to Russia but never got there, we were going to build a house in the mountains in Cyprus, plans done but George got this bloody awful PSP and it took everything away. Yvonne xxxx

Thats hard, Yvonne. It must be so hard to have been cheated of your dreams.

Like Julie , we travelled a lot and have wonderful memories. Always more to do but had a good roll of the dice. We won't get away together any more.

love, Jean xx

We have been cheated Jean, are longest trip was going to Australia on a cruise seeing many lovely place, our son was in Australia and we wanted to make sure he was ok. Feel lucky to have done it. Xxxx

Praise be you managed that !!!


So pleased it was a successful break (bar the little mishaps). It is good your son and daughter saw the level of their dad's needs too. How lovely you got a day out too. Hope everything settles down soon.

Love Tippy

Tippy we are lucky to have our children, they have been supportive over the last few years. Xxxxx

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