‘I hope I’ve broken some myths’
As a new campaign launches to challenge myths about dementia, we meet one of its ambassadors who’s helping to overturn attitudes and misconceptions about the condition
Ever since the day the doctors said the word ‘dementia’ to Sue Strachan (62) she was determined not to be defined by the condition that currently affects at least 850,000 people in the UK. And today, having seized life by the horns, ticking off her bucket list one by one, volunteering and even running a marathon, Sue is living proof that it’s possible to live well with dementia. That’s why she’s fronting a new campaign called Dementia Revolution for the 2019 London Marathon, which as well as fundraising for a cure, also aims to challenge myths about the condition. In December 2012 Sue, who lives in Herefordshire, was visiting a friend’s house in Surrey when she suddenly had no idea where she was. “I went as white as a sheet and kept repeating myself,” says Sue. “We thought I’d had a stroke but the hospital told me
I’d had a TGA – a transient global amnesia episode.”
She was advised she’d make a full recovery but a few months later, she still didn’t feel right, at which point she began a series of tests which eventually revealed she has vascular dementia. “This means my dementia is progressive and stepped, so if I were to have another TGA it’s possible I could wake up and no longer be able to recognise people. It’s a ticking time-bomb and it’s scary but I can’t do anything about it so I try to focus on the here and now instead.”
As Sue set about living as well as she could, she took up running on the recommendation of her GP who advised staying fit and active. “I started with the Couch to 5k programme – a beginner’s running app created by the
NHS – and then joined a local running group. It really surprised me how much I could do and the running made me feel good, while the running group gave me some supportive friends.” Having done the Royal Parks half marathon in 2015, Sue decided to take things one step further and contacted Alzheimer’s Research UK about possibly running the London Marathon to raise money for them and showcase what is possible with dementia. “Alzheimer’s Research UK’s mission is to find a new treatment for dementia by 2025 and I thought it would be fantastic to feel I was a part of that, even if in 2025 I’m not aware of that fact. I’m also on a mission to challenge myself while I’m still able, as I don’t know what tomorrow will bring.” Once Sue was offered a place on the marathon, training began in earnest, as did the fundraising. On marathon day, April 22, 2018, Sue set off, proudly wearing her orange Alzheimer’s Research UK top. The London Marathon can be notoriously overwhelming for even the most seasoned of runners, but for Sue the challenges were even greater as her condition means she struggles with direction and fatigue, while crowds and noise are incredibly intimidating. “I was really struggling at the 10k point because it was such an incredibly hot day and was leaning on a barrier thinking
‘you’ve raised the money, you’ve raised awareness, just give up.’ But at that moment, someone ran up behind me and asked for a selfie as she’d heard about my story and offered to walk with me for a bit. That gave me my mojo back and I made it to the end. “At the finish line, Alzheimer’s Research UK put on a little afterparty for us where lots of people came up to me saying they’d heard I’d run the marathon with dementia. “It was very humbling to hear my story had touched people and I realised just how many people are affected by dementia in some way.” To date, Sue has raised more than £13,500 and as well as running and fundraising, she also volunteers leading Dementia Friends sessions in workplaces to talk about some of the myths and misunderstandings around dementia. “It’s incredibly powerful at the end of the session to say I actually have dementia, as it really shatters people’s illusions about what dementia is. “I feel it’s a lot like cancer a few years ago when it was taboo to speak about it. Now it’s the big D people shy away from, but I wanted to encourage people to talk about dementia and the fact it is possible to live well with the condition.
“It would have been easy for me to get the diagnosis and think, ‘oh well, that’s it’ and feel miserable. And while I do have incredibly down days, I’m mostly positive.” Today Sue focuses on spending quality time with her partner Sheila and her extended family, while continuing her running.
“My diagnosis has made me grasp life by the horns as well as hopefully helping other people by showing what you can do with dementia.”
‘I wanted to encourage people to talk about dementia and the fact it is possible to live well with the disease’