"I wanted others to know they’re not alone"

[HelenPSPA]

"When a diagnosis of PSP devastated my family we felt confused and bewildered by this unknown condition. PSPA provides a source of information and assistance.

"I wanted to get involved with the helpline so that others know they’re not alone and that there is support available. I also want to raise awareness of both PSP & CBD so that people can be diagnosed correctly sooner, and provided with targeted support." Kumud Bawa

If you'd like to speak to our Evening Helpline Team about your PSP or CBD journey, please call 0300 0110 122 or email [e-mail]

The Evening Helpline is available from 7pm to 9pm, Monday to Friday.

[Dickwin]

Helen,

Thank you so much for being there for all of us. A PSP diagnosis truly is devastating for the patient and their family. When my wife was first diagnosed with PSP, we had received a Parkinson's diagnosis two years earlier. So I was initially excited thinking it wasn't Parkison's. That must be good...Right? Then I spoke to my cousin who is a Neurologist who is very familiar with PSP and my initial elation was quickly replaced by shock and bewilderment, and depression. The following weeks were some of the worst we have experienced, and I still cannot imagine just how scared and confused by this my wife must have been. Thank God for the PSPA. I am an American, but this British Association and web site has provided us with more information and assistance than any other group or individual. I would be lost without this.

Warmly,

Dick

[Hidden]

Agree with Dickwin I am in the USA and if I hadn’t found this site I would be lost.Thank you for helping.

[Blueclouds07]

Hello Helen,I agree with previous replies . My mother has been diagnosed with PSP lately but we spent 3-4 years between doctors and hospitals and some didn’t know exact what is going with her and others have given us a wrong diagnosis. Thanks to Allah for finding this site and PSPA . They helped a lot to know how we can take care of her.

And as you said we need awareness and I think the effort will be doubled in middle east area.

Thank you