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We used to walk a lot, but that all came to a halt. I used to garden, loved the gardening, but that all now has stopped. I have had the condition 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 have not 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 have not 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 mum'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 was not getting better, a neurologist appointment was made, and she was initially then re-misdiagnosed with multiple systems atrophy, which shares 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.