In May 2021, we finally found out why Dad was losing skills, why his left hand and arm were ceasing up, and why he couldn’t drive safely anymore. He was diagnosed with CBD (Corticobasal Degeneration). A rare and untreatable progressive neurological disease. 

It’s a cliche, but from then onwards, our lives changed. My Mum has taken on a full time carer role and all her retirement dreams have been put on hold - but for how long? We don’t know. There is no known prognosis for CBD - you have to just roll with the punches. And that’s been the hardest thing for me because our (mostly!) fabulous NHS is not set up to react to rapidly changing needs. It’s too under resourced and the skill base for professionals dealing with rare diseases is frankly not up to scratch in our experience so far.

But at the centre of all of this is a 67 year old man who’s had to hang up his drumsticks after more than 50 years playing in bands - his one and only real hobby and the centre of his social life. He can’t walk for more than 5 minutes without tiring, and has to avoid using stairs & steps - he’s missed out on gigs, Nia’s preschool graduation & other events because of his mobility. In his words, he’s “lost all his happy places”. Families like ours are dependent on the third sector to provide information and support, when it’s most needed. Dad might not be able to walk far now but I can run…a bit! And so I have to, so I feel like I am doing something useful amongst days of feeling helpless. Thank you for your time reading my story and for your generosity xx 

PSPA is the only UK charity dedicated to improving the lives of people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD). We provide information and support for people affected by PSP & CBD whilst funding research into the causes, treatment, and eventually a cure. Together we can stop PSP & CBD in their tracks.