When Craig Mastalerz was diagnosed with young onset dementia aged 51, he initially fell into a deep depression. But he gradually began to find comfort by setting himself hiking challenges and sharing videos of his adventures on social media.
The former soldier, from Almondbury near Huddersfield, says it was the “worst possible outcome” when he was told in February that he had three types of dementia, and had even “hoped” it was a brain tumour.
The devastating diagnosis came after 12 months of tests for symptoms including memory loss, problems with mood, dizziness and difficulty processing thoughts.
Now 52, Craig says he “wasted” four months at home feeling depressed before finding a new purpose by getting fit and organising challenges involving hiking and wild camping.
Since June, Craig has been on numerous adventures that have seen him walk up Scafell Pike, Ben Nevis and Pendle Hill in Lancashire, as well as doing other challenges, like plunging into ice baths.
“I believe as long as I keep going and keep busy, I can hold it at bay,” Craig says.
“I think if I’m just sat dormant, I’m in big trouble.
“As long as I’m happy – when I’m happy – it doesn’t seem to affect me at all,” he says.
‘It’s a cruel illness’
Craig has “mixed dementia” which means he has more than one type of dementia at the same time.
In his case, he is living with vascular dementia, Alzheimer’s and frontal lobe atrophy, which means that part of the brain is shrinking.
Craig was forced to retire from working as an electrician and property maintenance professional following his diagnosis, which has also added a financial strain to the family.
“It’s a cruel illness,” Craig says.
“It doesn’t give you a minute’s break.
“You think you’re going OK and then you forget something.
“It’s impossible to put into words what dementia is like – it’s such a struggle.”
Craig’s family carefully plan his adventures with him to make sure he is as safe as possible.
His walking routes are plotted on a GPS watch, and he is tracked by his wife Jane wherever he goes, with pubs, hotels and campsites contacted in advance so they know what time to expect him.
He has also recently cancelled a walking trip to Scotland because the weather conditions weren’t good enough.
“Until myself and his dementia nurse say, ‘come on Craig you need to be staying local’ he can go and do it,” Jane says.
“I’m not saying I don’t worry; I see it looking on the tracker that I know where he is better than he knows sometimes.”
However, Jane says that while he is still able to do these things it’s “brilliant” because he “looks so happy”.
Fran Mada, a consultant Admiral nurse at Dementia UK, says: “It’s OK to carry on doing the things that you like, you just have to consider safety.
“It’s about safety for the person with dementia and safety for others.
“If the person feels anxious and disorientated we might have to rethink if they can do this alone.”
Craig’s wife Jane says she worries about him but they plan his walks carefully [BBC]
Craig calls his social media accounts Beyond the Fog and hopes they will raise awareness about what it’s like to live with dementia.
He also hopes to raise money for dementia charities and the Royal British Legion once he becomes more established.
Craig admits that he still struggles on a daily basis to deal with his diagnosis but that keeping busy helps with the “emotional rollercoaster”.
“I’m terrified of being incapable of doing things – and in the long run that’s what I’ll end up being,” he says.
However, he says it helps him to know his message is starting to be seen on YouTube, TikTok and Instagram.
“I’m getting viewers, I’m getting followers,” he says.
“People need to be aware of this – and I think I’m quite funny to watch.
“The future should be OK as long as I can keep going.”
BBC Radio Sheffield presenter Ellie Colton has also shared the story of her father Richard who was diagnosed with young onset Alzheimer’s at the age of 59 earlier this year – before his dark hair even started to go grey.
She says it was “not something they expected to happen to him” at his age, adding he does “not want anyone to feel sorry for him”.
“I don’t let it impact me day to day as I have built-in tools to help me – simple reminders or making lists,” he says.
“It destroys you, it’s the most heinous thing and some of the things you’re told to do like keep fit you try to do to help with the lacking cognisance.
“You haven’t got a choice but to accept it and at the moment I’m still articulate enough to speak and communicate but I know it will become harder and that’s one of the things I’m dreading the most.”
If you have been affected by any of the issues raised in this story you can visit BBC Action Line.
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