The story of Joanna
I’d like to tell you my story.
Progressive Supranuclear Palsy (PSP) is a very rare terminal brain disease that slowly kills off the stem cells in the brain rendering sufferers unable to walk, talk, swallow, see and more. My beautiful Mummy lived with PSP for 11 long years, she fought valiantly with dignity and grace to the bitter end and finally passed peacefully last year.
PSP is hard to diagnose in the early stages especially, it is not a text book illness and is so unknown, even by medical professionals. There is not much support or understanding in helping families come to terms in learning to live with this debilitating wicked disease and get the right support, help and care.
Please help me raise awareness. PSP needs to be recognised and fast tracked to get people the correct necessary care as early as possible. They need to be referred with ease and not have to fight to be able to get health and social care, CHC funding and hospice care so that they can live as comfortably as possible. It’s not just about the very end of life, what about the bit in between? After diagnosis and before dying. People have to live suffering for years!!
PSP affects the whole family and they also need support as it is so stressful being a carer for your loved one. I would never have done anything differently but I can tell you I am still putting myself back together after years of having mega stress, heartache and then finally losing my Mum to PSP. I’m relieved my Mum is no longer suffering but I’m angry that she was robbed of being able to live her life happily with my Father in their twilight years which they so deserved.
In honour of my beautiful Mum Joan, please help me raise awareness to help ease the pain for other families living with PSP. Thank you 🙏