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?
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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.
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
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