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The condition is frequently misdiagnosed. One of the issues for people with PSP is that it takes an awfully long time to get diagnosed. At present, there are no diagnostic tests, usually, it's by taking a really detailed clinical history of the condition. So, people are often misdiagnosed with MSA, stroke, Parkinson's before symptoms become more apparent. And then we have to review the clinical picture.

Some people have excessive saliva. And for some people that is their cue to say, "What is the symptom that's annoying, you most?" And they'll say that "I am producing all this excess saliva and some of it is very thick so it's difficult to swallow." One of the things that we use is Atropine eye drops, so a little few drops of those under the tongue and it seems to help with the saliva.

People with PSP tend to overfill their mouths, which has a big impact on their swallowing. Difficulty then swallowing and leading to aspiration and choking and people appear to develop a sweet tooth. So, they're looking for biscuits and cakes and sweets and over-eating on the sugary things.

People with PSP. Their intelligence remains largely intact but they do have subtle changes, cognitive changes. People might become more aggressive than they used to be, more irritable than they used to be, or a big symptom with PSP is people become quite apathetic. So, people who have had high power jobs and they are out there in the workplace, you think when they have had that diagnosis, they would be kind of riling against it all, but they seem very accepting of it, accepting of all the different carers and people coming in and out of their house. So, apathy is quite a big symptom.

People may become emotionally labile that they may cry or laugh inappropriately. Maybe they are watching television, and they will cry easily at a film or something. So a symptom that wasn't in their previous personality. People with Parkinson's may have tremor, not every person with Parkinson's has tremor but people with PSP don't have a tremor. So, when people come to you and you're suspecting a diagnosis, if the tremor is absent and you have got some of these other symptoms, then that can point you in a direction of PSP.

The main diagnosis is made by taking a detailed clinical history, and as time goes on and the signs and symptoms become more apparent, then the firm diagnosis can be made. The chart that the PSP Society has produced is very valuable to be in A&E, to be in with the paramedics and the GP surgery, just to make them aware of some of the signs and symptoms that could be associated with PSP, to point them in that direction. I think this is like for a paramedic who goes out to see Mrs Jones who has fallen 100 times. Instead of just picking her up and taking her to a hospital, I think... "We've gone out to you a lot. How are you falling, why are you falling? Maybe it isn't that you have got whatever you've got." Just because somebody has got a diagnosis, it doesn't mean it's the right one and that is why all the information from people going in from care assistants going in, from OTs, physios to pool that information because then you can get a bigger, better picture.

As this disease progresses, diagnosis is often clearer. People may present with more frequent falls and be referred through to the emergency services a lot more, and this may then be referred onto a neurologist and it will be picked up. And the eye gaze may become a more serious problem with the supranuclear gaze palsy that will be an indicator that it is PSP.

Yeah. I used to walk a lot. That all came to a halt. And I used to garden, loved the gardening. That all now has stopped. I had the condition for three years. But before that, I was diagnosed with vertigo and poor balance. I went to the physio to correct the balance if it was possible, but then the physio noticed after nine months that I hadn't gained any balance.

I think when you first meet new people in the healthcare system, they have got very little idea about PSP or CBD. I think the rareness of the condition... Often you find they haven't come into contact with anybody with it before. And that can lead to a number of things going wrong. Initially, that led to misdiagnosis of my mom's condition, so it was felt her dizziness, constant dizziness and balance problems were originally down to vertigo. And after nine months of treatment for that when she wasn't getting better, a neurologist appointment was made, and she was initially then re-misdiagnosed with multiple systems atrophy, which has quite a lot of symptoms with PSP and CBD. And it was going through that support network that eventually she got referred somewhere else and eventually got her PSP/CBD diagnosis.