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PSP Association
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Neuro centre

Hi all I had a call from the neuro centre today, they wanted to assess George on the phone, they asked me all sorts of question, I felt really bad them trying to assess George in a phone call, told him that how can you assess someone without seeing them, I had to be a bit stroppy, and kept insisting that they have a face to face meeting to see George for themselves.

I don't really like being stroppy, because I am not like that but this PSP has made me fight for him, I really feel upset with them, I said my husbands doctor has been asking for this for nearly two months, and the speech therapist had been in touch with them so many times and it has taken so long, and now you want to assess him on the phone, am I being to sensitive? So many things going around in my mind, that when we got to the centre George went back, and I went with him straight onto the concrete path, he went pure white, and I cut my hand and hurt my knee, I was thinking of so many things.

Our son had a day off and he took me out to lunch. By the way the person that rung this morning and he said he would speak to his colleague and get back to me, I wonder when, I am sure he said today. Sorry to moan but have enough to worry about without another problem, they seems to be coming all the time.

Have a good evening Yvonne xxxxxxxx

6 Replies

I think the only surprise, is that they didn't demand to speak to George! Well Done for standing up to these people, I know it's not easy, but I'm afraid it comes with the terrority. I am a totally different person now, thanks to this blasted disease. Some bits I actually quite like, it's great not to be looked down at, by certain people. Other bits, well, like you, I hate it!!! I'm trying a new tack now, crying in front of these people, I hate crying in public, but the professionals hate it even more!!!!

I think we all have to accept, that the problems are going to keep rolling in, as long as they are different ones each day, we are doing OK,!!!

Keep those boxing gloves on!

Lots of love



Thank you I will xxxxx


Like everyone else on here pre diognoses I was a different person. I was not happy with the way the doctors treated Brian before diognoses but never made much of a fuss. But now we know what is what I'm like a lion protecting my cubs. And if anyone and I mean anyone says anything that I think is wrong I look them up and down and ask "are you for real". I think the two most important things to have now is a pair of boxing gloves and a box of tissues. And when you have finished one round have a glass of wine. Good luck Janexx


Love yur ideas on fixing things especially the wine !!!!!so rite yu don't realize how tough yu are till yr loved ones threatened then something kicks in my husband passed on jan 9 in October he told me flat out I would no be able to manage him at home proved him wrong it's where my pat needed to be And he was here !!!!yu no what's best but yu mite have to fight. Do it my heart felt wishes go out to everyone of yu battling this monster xxxoooo


Going to be on the phone in the morning with my boxing gloves on going to push it so the see George face to face and on Friday the speech therapist is coming around do will have a word with her and if need be will go to see GP as well if I don't get any joy boxing gloves out and polished xxxx Yvonne xxxx

1 like

I know what you mean. I am getting more and more stroppy because its the only way to get anywhere. But we have just returned from seeing the G.P. as C has a cold and she was really caring and listened. When that happens I feel tearful !

After getting really "teacherish " on the phone we have a pair of physios coming to reassess C. on Thurs. I don't think they understand how quickly things can change with this disease. Chin up !! love, Jean


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