Nearly ten years ago, my lovely mum Linda Lord started having strange neurological symptoms and it started a long road of medical appointments and worry. After a misdiagnosis of Parkinson’s disease and a year of treatment which didn’t do anything, doctors did some more tests and she was re-diagnosed with a rare movement condition called corticobasal degeneration, or CBD. 

I had heard of it but didn’t know much about it. But as a family we have had to learn fast. It’s a cruel condition that has meant Mom has declined fairly quickly. There aren’t any treatments available to help her and there’s no cure. No one really knows about the condition because it’s quite rare and it’s been really hard to get the right support for her. She’s already lived longer than all the doctors expected her to- but she can’t do anything for herself and her complex needs mean she has had to move in to a care home. The last few years have brought so much stress with arranging the right care as well as funding - don’t even get me started on that one! 🤯🤬

Until the symptoms started Mom was always active and busy, with a really sharp brain (especially when it came to maths!) She is now pretty much bed-bound, is fed through a tube and totally reliant on other people and can’t do anything for herself, and she can’t walk or talk. We know she knows what is happening as she often laughs at rude jokes, cries when emotional things happen and she will blink if she wants to say yes. At first it was just her right hand that stopped working so she couldn’t write, but now her left hand has done the same. She gets really upset about what’s happening to her, and it’s heartbreaking for all of us.

Until July last year Dad cared for her at home but two long stays in hospital (and somehow her surviving the second!) mean she’s declined further to the point that her needs are too great for us to care for her at home. Dad visits her every day but he and all of us are finding it really tough.

The photo at the top of this page was taken on Christmas Day- we were only allowed to take mum out for a couple of hours and she came to ours for a bit to open her presents. It was short but so lovely - I hadn’t seen her smile so much in a long time 🥰

Because of this I want to raise money for the PSP Association (PSPA), a national charity who provide support and information to people living with progressive supranuclear palsy (PSP) and CBD. They also fund research into better treatments (there aren’t any right now) and ultimately a cure (there isn’t one on the horizon). They aim to raise awareness of these conditions and improve the lives of everyone affected by PSP and CBD. They rely entirely on voluntary donations, and that's why they need our support.

People affected by CBD and PSP urgently need answers and hope. It’s too late for Mum, but people who are affected by this terrible disease in the future need research to discover new treatments. I’ve heard so many stories about people being misdiagnosed - so we need better ways to diagnose people sooner so support can kick in and they and their families can have a better quality of life.

So that’s why I will be running the London Landmarks Half marathon on Sunday 7 April and the London marathon on Sunday 21 April. I won’t be breaking any records but am hoping to get round both of them in one piece- probably a bit emotional! A few hours pain is nothing compared to what my lovely mum is going through.

I would be so grateful if you could get me through my training and the run itself, and help me raise as much money as possible.

Thanks so much for your support xxx