As you know I only just joined site, I don't want to say happy Christmas , cos I don't want anyone to say it to me, and I think you all further down this sad road than us, anyway all the best to all of you who have given me such good advice
Heady, Elsie,Tim sorry can't remember all of your names! Xxxxx
I do sympathize. I'll be glad when the holidays are done, but I will do my best to put a good face on it, and will no doubt make myself happy here and there over the next few days. Fake it til you make it, as they used to say...hang on, Debbieann, we are all in this together. Love and peace, Easterncedar
Debbieann we can't let this PSP beat us, we have to live one day at a time, and fight to stay a bit normal,whatever normal is. Chin up and enjoy the day. Sending you a massive hug. 💐💐💐💐
Please remember hat everyone is different I was diagnosed two years ago after changing it from Parkinson's in 2008 but ( (touch wood) still feel OK and still live an independent life. This psp doesn't have too be a sentence , Don't give in to it . good luck
You are right Debbieann it is a sad road, a very sad one but it is also a very long one that our loved ones have to suffer and us endure. I remember the first Christmas after diagnosis 5 years ago. My darling husband could join in the celebrations as we spent Christmas with our grandchildren and their parents. I thought it was going to be sad and I did shed a tear but I remember the fun we still managed to have, even though he nearly fell every time he got up from a chair. This year my darling will be in bed for most of the day to take pressure off his skin but when he is in his chair I hope to make it as joyous as possible; I'll put Christmas music on, light Christmassy scented candles and describe gifts I have to open for him that he can't see. Happy Christmas does seem a strange thing to say in our circumstances so I'll say I hope there is something during the next few days that will make us all smile, laugh and look back on, as being a good thing to remember.
Sending you a big hug and praying/hoping/wishing we all have a peaceful Christmas filled with love.
❤️ X
Thanks Debbieann, it is a long road and changes day to day are not noticed but this time of year your memories flood back good and bad. Last year M could eat Christmas lunch, puréed but still proper food, this year PEG feeding but I will give her a teaspoon of turkey and sprout, she could walk without physical help from room to room, though shadowing to stop falls, this year she can stand from chair with help but walking is only in short supported bursts of stuttering steps.
But equally we have the fantastic memories of travel, family meetings, parties and things done together.
This is the best present I can give you at this time of year while PSP is in early stages do things together get photos to remind you in the dark days to come. I have a new PC with a big screen I run some of our photos on a loop for M to look at when bored with TV or radio M seems to like remembering what we did together.
Wishing you a happy Christmas Tim
There is not much more I can say that hasn't already been said Debbieann. I like best the wisdom to use this time to make happy memories. Even as PSP becomes more pronounced, there will be times that you and your mate can make good memories, unless of course, you are not looking for them. then the small joys will have passed you by, and PSP will have won again. The other day when the little lady brought our suction machine, it was scary but still a bit like Christmas...getting something new!
And now B has just received a PEG feeding tube to keep the choking at a minimum.
And thank you God, it has. It's only been a day with this tube, but the sweet sound of silence when all there used to be was choking, is sheer bliss.
There can be good in things, but you have to look for it. Don't balance life on normal scales. Make a new normal, find joy where you can, do not let PSP be the winner.
Sincerely , AVB
Merry Christmas DEB
When does it start to improve?
How to talk and treat them. 
Keith, the love of my life
\"Why am I so tired all the time?\"
Care home complaint - reply
