My Story

I'm running the London Marathon 2023 in honour of my lovely Dad, Bob Pinegar, who sadly passed away this year and left an immense hole in our hearts.

He was a PE teacher, a rugby player and a gymnast and taught me the joy that can come from exercise, although it took me a while to believe him! He didn't really see the point of running if it wasn't chasing a ball, but I know he would be incredibely proud of me taking on this marathon, especially as I inherited none of his natural sporting grace.

Dad also loved a challenge and was a tad competitive to say the least! I can't think of a better way of celebrating his life, than with a mammoth sporting task like this. 

I'll think of him with every step, especially when the pain kicks in. I already know that remembering his determination, kind heart and silly jokes will keep me going through the dark winter months of training and to that all important finish line.

You'll always be with us Dad. x

Bob's journey with Lewy Body Dementia and why I'm raising money for Alzheimer's Society.

Dad suffered with Lewy Body Dementia for 6-7 years. In the early days, he started to change and display a number of strange behaviours. He went for a brain scan which showed...a perfectly healthy brain. However, we realised we were watching Dad drift further and further away from the man we knew. Doubts crept in that the clear scan wasn't the end of the story and we had many sleepless nights wondering where our Bob was going. Eventually we started to listen to our instincts. Mum and I asked each other 'What do you think it is?'. We agreed it must be some sort of Dementia.

We found resources like the Alzheimer's Society website that described Dad's symptoms to a tee. Despite having a Grandma with Alzheimer's and another with vascular dementia, LBD was a very different beast. Seeing what it could be in black and white finally backed up our gut feeling that this illness was something far bigger than 'grumpy old man' syndrome.

As we lived with Dad’s symptoms we went through times of immense sadness, confusion, guilt, frustration and exhaustion, but we were relieved to know what it was and to finally get an official diagnosis. However Dad’s care was in no doubt, limited. With the arrival of Covid many services went online or into complete non-existence. I think that as well as the extreme pressure our healthcare system was under, there also appeared to be very little known about LBD, despite being one of the most common dementias. In all honesty, Dad and his wonderful full-time carer; my Mum, were just about left to their own devices. 

We received very little support from our care system. Despite also being limited with Covid, local Dementia coffee mornings and a few hours of respite a week provided by charities, were a lifeline for Mum in helping her care for Dad.

As well as feeling somewhat alone on this journey, there was the financial mountain to climb when Dad sadly had to go into a care home. The fees are eye-watering and many care homes just don't have the facilities to care for Dementia patients. Luckily, the one in the area that could care for his challenging needs, was lovely to him.

Dad declined rapidly in the home due to the final stages of his illness taking hold. However, for others, it could be years. The worry of how long the money would last is crippling for families. We started to feel let down by a care system that provide end of life care for some conditions but leave others like LBD completely alone.

This film outlines this perfectly and has made me feel like we weren't just imagining it. "With Dementia, we pay the cost." The average personal cost of Dementia care is £100,000.

This is in no way an attack on the wonderful people in the NHS or care system in this country. This is just our story. So many people have a story like ours and I think we all agree that the system is broken. I'm running for Alzheimer’s Society because charities like this plug those vital gaps. Without them I honestly think we would have felt completely alone with Dad's journey. 

Their great work offers support for individuals like Dad and the tireless work of their carers. They conduct vital research that may uncover some of the mysteries around this awful disease. And they are pushing to get the discrepancy of care for Dementia patients to be addressed in government policy. 

By funding some of that work, I can only hope to help this heartbreaking journey run a little smoother for others.

Thank you for your support. 

Claire