Below is the piece I wrote when I launched this fundraising page back on New Year’s Day 2020. Back then the only challenge ahead was the marathon itself - little did I know that we’d all be battling the hardship, heartache and upheaval of Covid-19. 

Sadly, we lost mum in February this year but the sentiment of the piece I wrote remains so I’ve left it as it was written - a moment in time, a world away from where we’ve all been these last 18 months. 

On Sunday 3rd October I’ll finally be pounding the streets of London and I’ll be grateful for each step I take. Thank you for your support.

Phil Winterburn - September 2021

On April 26th I’ll be running The London Marathon (my first marathon) to support the amazing work of The Alzheimer’s Society. Thank you for visiting my page and making a donation - this is hugely appreciated - I can guarantee the money raised will be put to great use. If you can spare a few more minutes, please read on - I’d welcome the opportunity to tell you a little more about this disease, the impact it has on those affected and the sense of loss experienced by friends and family as the disease takes hold. 

If you know me well then you’ll know a little of mum’s story (that's mum in the photo with me as a toddler). I say her story but really it’s a family story with my dad wearing the superhero cape and my brother and I occasionally pulling our underpants over our jeans as his hapless sidekicks! Truth be told, calling this a family story is also misrepresenting it - it’s a community story - a people story - you’re most likely someone whose life has been touched in some way by my mum or dad. Even if your link is with me or my brother (and you’ve never met my parents) you’re really only one ‘click’ removed from them and, dare I suggest, under their influence!

Mum was barely sixty when Alzheimer’s first appeared. From what I’ve read and heard, there are many ways in which Alzheimer’s manifests itself and evolves over time - each person’s experience is, in many ways, unique. Alongside this, anyone who has a loved one affected by Alzheimer’s will have their own perspective on the disease - this is mine.

This story starts with a happy beginning. All is well - memories are made, conversations ignite opinions, calendars are juggled, arrangements re-arranged, influence is exerted, shoe laces tied, suggestions carefully crafted, social cues read, rounds of drinks memorised and delivered, cupboards stocked, cobwebs spotted and swept, journeys are planned, appointments kept, books balanced, corks popped - days are long and exhausting but, at the end of each, there’s a quiet satisfaction that just about everything has been done and that all is well in your world.

Against this backdrop, Alzheimer’s creeps in: a shadow. To begin with it masquerades as the ‘easily explained’ - a repeated question could just be tiredness or good, old-fashioned, inattentiveness. No one spots the shadow as it cloaks your loved one, enveloping their mind in its inky void. 

Over time the shadow becomes a hole - a deep well with a fierce gravitational pull. Invisible tendrils snake from the well and begin pulling at your loved one, dragging them towards the darkness. Now you know Alzheimer’s is in your world - you cling on, you hold tight, you plug the hole with love and time and tenderness but its appetite is insatiable. Alzheimer’s keeps tugging - cruelly tenacious, malevolently resilient - knowing its victory is ultimately assured. 

I know this sounds bleak but there’s a point to it. There’s no cure for Alzheimer’s. There’s no treatment proven to slow its progress. But there are people working on it and there are organisations - The Alzheimer’s Society being just one - who, not only enable this research, but also support people with the disease and, equally importantly, the many family members who care for them. 

This story also has a happy ending. Mum is still with us. Alzheimer’s has taken her cognition, her speech and, most-recently, her mobility but it can’t take her spirit - the glint in her eye, a smile which radiates sheer joy and a subtle change in posture which implies she simply wants to give my dad ‘a good telling off’! The story is still being written and now you’re a part of it so, from all the Winterburns, thank you. Knowing you’re there will make each mile just a little easier!