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Eventually, when we got PSP diagnosis, we found the local PSP meeting group for us and has been, I think, singly, the biggest comfort for my mum. And for us, as carers, 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 of event for a couple of hours gives us 10 days to two weeks of kind of enjoyment of that month. So it is great to catch up with people. And somebody has always got a tip for you to share. So mum really struggled with light sensitivity. It was one of her earlier signs. And she went from wearing sort of glasses and pulling blinds down in the house, to wearing sunglasses all the time, to now wearing these kinds of welding, we call them her welding glasses, which is sort of nearly black out. And we did not even really know they existed. And it happened to be somebody else that suffered that in our local PSP group, brought the glasses for my mum to try. And that was it. We managed to get some, ordered them.

So that one trip. And I think that was the second time we have 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 is not fun for everybody. And if we do that, she can not 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 absolutely massive problem that my mum had. So that has been exceptional. You can not speak to enough people about what they might have found from themselves. And even in our local PSP group, there are maybe five families. Each one of us have found something different. And we have 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 would just ask any person that you are 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 had not thought about.