My mum's story

FOR CORTICOBASAL DEGENERATION CBD

I have put this under my mum's name Helen Henderson but I write as her daughter on her behalf. Its been a long and scary journey. Not havng a diagnosis at the start and all the diagnosies given and then ruled out along the way. Then getting the diagnosis and being told "if you haven't heard of it, I suggest you google it". Reading up on it and from then feeling like everything to do with this disease was going to be a struggle and it sounded horrendous and living nightmare. The main issue seemed to be the total lack of knowledge that our GP, carers, social workers had on what was happening to mum and the type of care that was going to be needed not just at that stage but all the stages that were going to follow up until the stage we are at now. From start to the stage we are at now ( we are calling final stage) has been a fight from start to now. When I (her daughter) started to look online for anything that might help us, we found a lifeline, a group on facebook who then put us in touch with an association for PSP & CBD. They got in touch and helped by sending us heaps of booklets that I could then pass onto mum's GP, carers and social worker and bascially told them "this is real and happening and go away and read this". They all did and then and only then did we start to feel that we weren't fighting anymore that finally her diagnosis was being accepted and recognised. Once that had happened her GP referred mum for palliative care and here wee are at the present day, They came to see her, asked her what she wanted to happened and how it was too happen and we are just now taking each day as it comes. as a family we treasure every extra day we have with her as we know it is just a matter of time until her suffering will be finally over.