Information and Resources

PSPA provides really concise written information on all the signs and symptoms. They offer an area advisor who is there for telephone advice and support, and they have conferences for families and friends, and also healthcare professionals, so they provide some vital services.

Eventually when we got PSP diagnosis, we found the local PSP meeting group for us and has been, I think, singularly, the biggest comfort for my mum, and for us as carers, of just being in a small group of people who know exactly what we are going through, exactly how to help each other get along. And my mum starts getting excited about it, as do we, the week before we go and then we are full of stories and conversations after it. So that small event for a couple of hours gives us 10 days to two weeks of enjoyment of that month. So, it is great to catch up with people and somebody's always got a tip for you to share. So, mum really struggled with light sensitivity, that was one of the earliest signs and she went from wearing sort of her glasses and pulling blinds down in the house, to having sunglasses all the time, to now wearing these kinds of welding, we call it her welding glasses, which is sort of nearly blackout. And we didn't even really know they existed and it happened to be somebody else that suffered that in our local PSP group, brought those, the glasses for my mum to try.

And that was it, we manage to get some ordered, and... So that one trip, and I think that was the second time we had been to the PSP alleviated 50% of the thing that was causing me mum the most difficulty at that particular time, which was just constant pain and headaches because of brightness and we could not get the house dark enough, without literally plunging it into absolute darkness, which you know is not fun for everybody, and if we do that, she can watch the telly, because the telly is then too bright. So, it is really difficult, but that one throwaway comment in that PSP meeting solved an absolute massive problem that my mum had. So that's been exceptional.

You cannot speak to enough people about what they might have found from themselves. And even in our local PSP group, there is maybe five families, each one of us have found something different and we managed to share that around between us, and I think everybody as a whole now feels that they are getting better support as far as that is concerned. So I will just ask any person that you're getting some support from, ask them their views of what else you should be doing, and where else you should be getting support because they are likely to know something that you probably just have not thought about.