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PSP Association
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New to this site, but not PSP

This has to be one of the most frustrating diseases that are misdiagnosed. It took almost 18 months before my 82 year old mother finally received the correct diagnosis. She was probably in her 6th year of having it. Her eye doctor explained more to us than her first neurologist did. Her current neurologist is wonderful! His main focus is Parkinson's and he is in the process of developing a new drug for that horrible disease. I still feel lost, frustrated, and helpless, but I know that my mother is in good hands. She went from living by herself into assisted living in less than 3 years. The falls, they were awful, but she never broke a bone. She did end up getting stitches several times. She went from a walker to a wheelchair in less than a month. She lives 4 hours from me and I feel so guilty because I can't be there for her. I am so glad that I found this community. I think you are going to be my lifeline as I deal with what time she has left. I've been told that 10 years is pretty much the end of their time. She has had it for about 8 years now. I'm hoping that she will prove "them" wrong!

4 Replies

Dear Djunel,

Welcome to this site full of wonderful people who have become my lifeline . Full of great advice and encouragement always ! I too live a distance from my mum and I weep every time I leave her . She stays with me every other week for a week and then goes home . It's so hard !!

Just busy seeing her lots and making as many memories as I can !

Love to you



Welcome. You have many supportive friends here and lots of good information. You can ask questions and often get answers that the medics would not know about. X


Hi. I also hope you have longer with your mum, lets hope so.xx


Hi djunell

Sorry to hear you and you Mum have to deal with this.

That damned distance thing is difficult and not much can be done about it. Very frustrating.

Maybe when she needs a Nursing Home you can get one nearer you?

I hope you will post here when you can.

Best wished to you and your Mum

Kevin and Liz


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