Just like the character Nigel Bates in EastEnders, Mark Ellis was diagnosed with early-onset dementia. Now he’s determined to make the most of every single day he has left
Sitting down in front of his consultant neurologist, Mark Ellis had a feeling it wasn’t going to be good news.
After years of increasingly worrying issues with his memory, he and wife Emma felt certain something wasn’t right – Emma’s mum Anne had recently been diagnosed with dementia in her late 80s, and the couple saw too many similarities to be easily dismissed by their GP.
Finally, three years after first wanting answers, the doctor at Sheffield Hallam Hospital confirmed their fears – Mark, just like the character Nigel Bates in EastEnders last week, was given the bombshell news he had early-onset dementia.
Diagnosed before the age of 65, the devastating brain disease now affects over 70,000 people in the UK, a 69 per cent increase since 2014
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Building surveyor Mark said: “I just broke down and thought this is it, my life’s over, there’s no cure, no hope – but the doctor told me not to give up, there are lots of treatments which can help slow the decline.”
Immediately given the drug Memantine to do just that, Mark knew he had two choices – either wallow in self-pity, or, as his doctor advised, make the most of every day left.
“Being told you have dementia so young, with so many things to look forward to, is unbearable. The plans you had are ripped up and thrown away in an instant,” Mark said.
Educational mental health practitioner Emma, 50, said: “We got home and told the kids we had something important to say,” Emma said. “Kelly was pregnant with our first grandchild, which was very poignant, and all of them just said we had to live for the now, to get on with whatever plans we’d been saving up.”
It was then that Mark started compiling his bucket list – enjoying seeing new parts of the world on cruises, taking part in more research programs to help find new treatments or even a cure for dementia, making time to see his children and grandchildren grow up, and renewing his wedding vows with Emma.
Mark said: “It wasn’t just about me making my own memories, I wanted my family to have those memories too, to remember me by after this illness started to change who I am.”
Mark says he first started noticing symptoms of the disease in 2017 – forgetting to turn the taps off and leaving the bath to run over, leaving his keys in the front door, forgetting plans Emma had repeatedly told him.
Building surveyor Mark, now 58, said: “At first I thought it was just old-age memory loss, but then started to get really worried – but didn’t want to tell anyone because I thought I was letting the family down.”
Finally opening to Emma about his concerns, they went to their GP for tests – but it wouldn’t be until three years later that they got confirmation of their fears.
Coincidentally, Emma’s elderly mother, Anne, had recently been diagnosed with frontotemporal dementia and had also hidden her symptoms for years before getting help.
Mark said: “I didn’t want to go and visit Anne in her care home because I was worried this would be me, this was my future. I only went to see Anne in 2021 when she was about to pass, blinkering myself from the realities of this horrible disease, like too many men do.”
After going back to their GP, Mark and Emma finally got a referral to the neurology department at Sheffield Hallam Hospital, where he underwent a series of brain scans – but were told the results of those scans were inconclusive.
But refusing to accept that nothing was wrong, they went back to ask for a second opinion – and then got accepted into a research program, including a lumbar puncture test and PET scan, which finally gave them the news they’d been fearing.
Since then Mark has done exactly what he promised – they regularly enjoy relaxing weekends on the coast in their new caravan, they’ve been on countless holidays and cruises – with many more planned – he has walked his grandson Archie to school for his first day, and taken part in medical trials and raised funds to help find a cure for the disease which has taken away the future he’d been planning.
But it was finally renewing his wedding vows to Emma in October on her 50th birthday that Mark says was the ‘best day imaginable’.
“I’d nagged Emma endlessly from the moment I got my diagnosis that I wanted to tell the world how lucky I was to have her, this amazing woman by my side as we face this uncertain future,” he said. “But she just kept telling me how silly I was being, it would be a waste of time and money, so I eventually stopped asking.”
Arriving at his daughter Kelly’s house for what he thought was going to be Emma’s 50th birthday on 3rd October, Mark had no idea what was in store for him.
Behind the scenes Emma had spent months secretly planning their second ‘big day’ as the perfect surprise for the love of her life.
It was while on holiday in Majorca last May with their son George that Emma had a change of heart – and set the ball rolling for the ‘biggest and best surprise’ of Mark’s life.
She said: “It was on that holiday that I realised how Mark was actually right, how much renewing our vows would mean not to just to us, but to all our closest friends and family, everyone who knew what we had coming,” Emma said.
“I sat alone with George one evening after dinner in the hotel bar, watching the sunset, asked what he thought, and he told me it was a brilliant idea – but we had to make it as stress-free as possible for Mark, knowing with his anxiety he couldn’t deal with big crowds.”
Over the coming weeks and months, Emma secretly sorted every tiny detail – the venue, the celebrant, the photographer, she arranged singers, and even organised a florist to recreate exact replicas of the same buttonholes and bouquet they’d had made for their original wedding almost 25 years before.
Arriving at his daughter Kelly’s house that Saturday, she broke the news there was a new plan.
Mark, now 58, said: “My head was all over the place, I didn’t know my head from my backside!”
Kelly showed her dad the special poems and vows written for them to read out, and slowly Mark got an idea of how much time and love his wife had put into the day ahead.
Just over two hours later, Mark was accompanied by both Kelly and his other daughter Elizabeth down the aisle at The Wentworth Arms pub in Mapplewell to meet Emma and Geoge standing proudly in front of the celebrant.
“Mark’s Alzheimer’s meant he’d had a few wobbles about this, but after seeing how excited we all were and how many of our closest friends and family there were waiting, we quickly calmed his nerves,” Emma said.
Emma said: “Only our close family knew what we had planned, so the guests were as surprised as Mark – there wasn’t a dry eye in the room, and there were massive cheers and whoops after we said our vows!”
“We didn’t want the day to be sad, but the opposite – to create more amazing memories for all of us, to tell everyone there how lucky we were to have found each other. Nothing crystallises your feelings for someone more than being told the clock’s ticking, and since Mark’s diagnosis I came to realise how very special he is, whatever the future held.”
“I knew it was better for me mentally not to know about it in advance because I’d have been so worried, an anxiety I’ve developed as a result of my dementia – and hearing that Emma and all our kids had been involved in the planning made it so much more special.”
“Creating those special memories with the most amazing people looking on, being able to see the photographs now, it’s literally priceless to me.”
On taking part in the dementia research programs, Mark said: “I felt anything I could do to help shine more light on this illness could be a legacy to help others in the future. I’ve got a fire in my belly to change the prognosis of people like me who feel their life’s over – dementia is such a scary, taboo subject, and the more we run away from it, the less chance we have of ever finding a cure.”
“Seeing celebrities like Bruce Willis, Pauline Quirke, Terry Pratchett all openly talk about their young-onset dementia is so important to raise awareness – this disease can hit anyone, and rips whole families, whole communities to pieces.”
After the ceremony, the whole family and their guests enjoyed a relaxed meal in the pub, reminiscing on the great times they had enjoyed – and the plans they had to keep going.
Mark said: “I’ve walked our youngest grandchild, Archie, to school for his first day, I’m hoping I’ll be able to do the same with our other, Ida, this September, we’ve just enjoyed a holiday in Turkey for our 25th anniversary, we had a lovely cruise around the Canaries with Kelly and our grandchildren for our second honeymoon – I just want to inspire others to grab life while they can, to beat this horrible disease.”
Help find new treatments or a cure for young onset dementia by taking part in Alzheimer’s Research UK’s Walk For A Cure events this summer, a nationwide series designed to unite communities in the fight against dementia
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