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I have to say, the people that we have met have really shown an interest in it. So they will tell you the first time we met him, he immediately went to the website to see if he could find out some information. The physio that we are under in Colchester is fantastic. And anytime we go to see someone else, she wants to be on the phone with us immediately to say, "What have they told us? How might this illness change?" Because she had not come across it too much before. So I find that the people that we meet have got a real thirst for the information. But I guess when they are not meeting that many people that often, there are perhaps other things that they need to read up more on initially, that maybe come across as more helpful to them in their day-to-day jobs. So I think more information about the people that need it would be really helpful.

The doctor at first did not seem to understand what PSP was. And the society sent him an information leaflet, so he now seems to understand more.

I think it is important for healthcare professionals to understand the condition, and to help get to diagnosis quicker, where possible because I think they are so complex symptoms, and so much worry. I saw in my mum that whatever they were coming up with as a diagnosis, she really in herself did not think it was that. So went along with it for the first few weeks or months of treatment, whatever that would be, and for my mum, it was the vertigo treatment, so it is a lot of work with the physio. But deep down, she knew that she was not getting any better, and that created a lot of angst and a lot of anxiety, and I am sure that that in the early months did not help mum come to terms that something serious was wrong. So I think that would help with maybe early diagnosis. If it was more readily understood, sort of rare illnesses like this. And then I think it would help certainly my mum when she is going to check-ups, outreach appointments, things like this, to feel more supported when she goes. So often, we get times for things in the morning to go to appointments where, quite frankly, my mum is no good until lunchtime.

It takes her so long to get up and out of bed, and then she is exhausted, so we then need to let her rest on the bed for a period of time. So we really cannot get anywhere, even local places, until after lunchtime. So I think even if people understood perhaps that is common for PSP and CBD sufferers, that they could make adjustments to the times' things are done. That is a simple thing, I think.

Most people that you talk to have never heard about it. David has some cards that he gives out to people, so they will understand. But we find, they do not take much notice of the card. They do not read it and find the website that is printed on the card. I was in the hospital before Christmas, and we put a card on the table, that you have by the bedside; and no one looked at it, or asked me any questions. So the way they treated me in the hospital, they really did not know about the condition. They wanted me to walk, and I am not able to.

She has got significant speech problems now, and that is... While she has no dementia symptoms, she finds it difficult to verbalise some of the words that she is thinking in her mind, and so that appears that her speech is often slow and slurred, and it is difficult for people to always recognise some of the things that she is saying. So people can often treat her as if she has got dementia as well. But I think without me there being able to talk to people about what is going, it would be virtually impossible for my mum some days to get over the difficulties that she is faced, and actually answer some of the questions that she is being asked.