Help identify the priority research questions for PSP & CBD

[HelenPSPA]

Do you have any questions about PSP or CBD that you would like us to look into?

Questions highlighted so far include can physiotherapy and exercise can help with symptom management? How we can stop misdiagnosis? What are the best ways to control pain? How can we improve the care people receive at home? How can I improve my ability to swallow?

But what is important to you?

If you have any questions about living with PSP & CBD, the causes, prevention or cures, you can input them into our strategy development plan by completing our online questionnaire.

Please note that the questionnaire closes on 31 January.

surveymonkey.co.uk/r/PSPARe...

[Red1990]

Hi Helen,

I am in the US.

Do you still want my participation in survey?

Thanks.

Karen

[HelenPSPA Administrator PSPA in reply to Red1990]

Hi Karen,

Our research strategy is UK-based but we welcome input from everyone.

Best Wishes,

Helen

[Red1990 in reply to HelenPSPA]

Hi Helen,

I waiting-room-completed on my phone. Please ignore misspellings and hurried grammar mistakes..

The info in this presentation is borrowed from the Dystonia Support group..but I find the information quite interesting and think your staff might as well.

m.youtube.com/watch?v=-dUG4...(Not working as expected?)

[HelenPSPA Administrator PSPA in reply to Red1990]

Thank you

[Ruth1921]

I have been wondering for some time, and spoken to consultant and others about this, whether there are particular triggers for PSP. Many of those I have spoken to have had some trauma in their lives before the onset of PSP. For example, my own husband was diagnosed with prostate cancer, which shocked him considerably and the treatment wasn't that kind to him either. It was not that long after that he was eventually diagnosed with PSP. Others I've spoken to at clinic and meetings have said particular things happened in their lives which were traumatic, e.g. one person's marriage broke up very acrimoniously, another lost their job and their house. And there were others with equally traumatic stories. As an ex-researcher myself (although not in this field), I do wonder whether - rather than doing studies that look specifically at current coping strategies and such like - it would be useful to have research that explores PSP sufferers past histories. Just a though! Janet

[knitting62]

I live in the UK in Sussex do you want participants?

[HelenPSPA Administrator PSPA in reply to knitting62]

Yes please

[knitting62]

How do I participate?

[HelenPSPA Administrator PSPA in reply to knitting62]

Hi, if you click on the link below it will take you to an online survey: surveymonkey.co.uk/r/PSPARe...

[knitting62]

Thank you for the information you sent, I'm going to get my family to look at it so they know what it is exactly and what is expected.