The PSP Association

From everyone at the PSP Association, thank you for your support in 2011 - with your help we have made a real difference to the lives of people living with PSP and their families.

Christmas is always an emotional time. We celebrate life and enjoy the company of family and friends and look forward to the year ahead - some with excitement, others with trepidation. We also turn our thoughts to others.

When Hannah Daykin's father injured his arm at work five years ago, little did she realise it was the start of a devastating disease which would rob her of the dad she knew and loved.

Twenty-one-year old Hannah was, by her own admission, a daddy's girl. But over the past five years Hannah has watched her father David change from the funny, loving and caring man she knew into someone she barely recognises.

"He was a very funny dad," said Hannah from Nottingham. "And when he wasn't funny we had to laugh at his jokes anyway!
"I remember him taking me to my first football match when I was seven. He is a huge Nottingham Forest fan and had followed them for years. My first match we won 6-1 but I cried all the way through. I didn't like the noise."

Today Hannah's experience of her father is very different. He is unable to walk or talk and relies on others to do everything for him.

"He is so different now," said Hannah. "His speech is next to nothing and even though his brain will tell him not to do something his body still does it. It's heartbreaking to watch. I miss the person he was and I find it hard to see him. He's just not my dad anymore."

Hannah's family first noticed changes in David after he dropped a radiator at work and tore a tendon in his thumb. Looking back they now realise that accident was the first sign of the disease taking hold.

"He was off work for six weeks and after that he started acting differently," said Hannah. "He became obsessive about things like time. He wanted his dinner cooked at a certain time and he would insist the TV volume was always at the same level."

The Daykin's had no idea that David was becoming ill with Progressive Supranuclear Palsy (PSP). By the time he was diagnosed in 2008 he had started to lose his balance and had fallen down the stairs on several occasions.

He couldn't lift his head up anymore," recalls Hannah. "I remember being at the top of the stairs talking to him. He was at the bottom of the stairs and he couldn't look up at me."

David's diagnosis hit the family hard as they were catapulted into an unknown world in which they had to adapt very quickly to rapidly changing circumstances, while at the same time come to terms with the fact they were losing their loved one.

"The diagnosis didn't feel real," recalled Hannah. "We didn't know what the disease was. If you are diagnosed with something like cancer people have heard about it and understand it. We had to research PSP and then tell other people what it was."

Hannah and her 14-year-old brother have been undergoing counselling to help them come to terms with the loss of their dad. Hannah has also been actively raising awareness of PSP through the media, Facebook and blogs.

As they prepare for the future, Hannah and her family know David's death is inevitable and her mum has helped David to plan his funeral.

For Hannah, the future means working hard to ensure more people gain a better understanding of PSP, its causes and hopefully a cure.

I know it will take a lot to find a cure. But we need to get a better understanding of PSP. That's the only way anything will change," she added.

If you are able, please consider supporting our Christmas Appeal. Every contribution goes towards helping people living with this devastating disease and the £1m we need next year to invest in vital research to beat PSP - once and for all.

All we can do is support Hannah and her family through this difficult time but we are committed to beating this cruel disease - can you help us?

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