19-05-2025
'I forgot my daughter's birthday – it led to the worst news I could have imagined'
'I forgot my daughter's birthday – it led to the worst news I could have imagined'
Andy Paul was struggling to spell words or remember names – and then he was given a life-changing diagnosis
Andy Paul, from Deeside, was diagnosed with early-onset Alzheimer's five years ago
(Image: Keith Freeburn )
Andy Paul has never forgotten any of his kids' milestones but when he opened his Facebook page and saw an alert saying it was his daughter's birthday he had absolutely no recollection of it. Luckily it was early in the day and he could cover his tracks by popping to Asda and buying her a card. But, it was the latest little sign of his memory that caused him worry.
He made an appointment with his GP and was referred to a memory clinic where he was asked to draw a clock. But, try as he might, he couldn't remember where to put the number 12. A brain scan then followed after which he was told he had Alzheimer's disease. He was just 60.
Before then he thought it was just part of getting older but with the diagnosis came the warning he probably had between five and eight years to live. He is now 66 and five years on from his diagnosis.
He had put forgetting names, or spellings, down to getting older. "I've never been the brightest star in the sky when it comes to putting pen to paper but I seem to have just lost the ability to spell anything. Basic came as a bit of a shock," he said. For our free daily briefing on the biggest issues facing the nation, sign up to the Wales Matters newsletter here.
It dawned him it was more than getting older. "I was forgetting dates and I couldn't remember actually basic things like people's names – people I had known for a long time. I remember my kids' names still but even now when I go out I say: 'What's his name?'."
His overriding feeling when he struggled to spell a word or remember a name was one of frustration, he said. "After getting the diagnosis I thought: 'Well I can't argue with technology – I've had the scans and I won't beat this, because you won't beat it, but I've got to cope with it'."
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In the years since his diagnosis his symptoms have got worse. He now relies on help of apps or Alexa for any spellings and his body shakes to such a degree he has had to change his life. It stops him doing day-to-day tasks and he is having to learn to adapt and ask for help.
"I won't eat out now in a restaurant because I don't want the food everywhere. I took my grandkids to McDonald's and dropped the tray with all the drinks on them and everything. I just wanted a big hole to swallow me me up but there are good people out there and when I dropped it there was a guy there who was fantastic. But what I should have done was have said to my grandson: 'Carry the tray for granddad'.
But he said: "It frustrated me more than anything and I suppose I was a little bit sad but I'm not one for dwelling or self-pity. So I gave myself a kick up the bum.
"I used to be embarrassed with myself but it's not fault – I didn't ask to get ill."
He is now awaiting brain surgery. His surgeon has warned him that the surgery could stop his tremors or it could bring on his condition quicker. But he wants to have good years in which he can start going back out for dinner without fearing not being able to control his hands so he is able to eat in public.
"What the surgeon said to me was: 'I don't know what your outlook is'. My outlook is is quality of life – not quantity. You're better to have two good years than five bad ones. That's what I believe in."
Andy, from Deeside, is involved in a number of charities, including Alzheimer's Society, and is involved with training North Wales Police and the Welsh Ambulance Service as well as giving talks at Bangor University. He wants to do anything he can to help people understand the condition.
His charity work has meant he has become a go-to for friends who approach him for advice, saying they are worried about a relative or even themselves. His advice is simple – go to the GP to get help.
The signs and symptoms of Alzheimer's
This week (May 19 to 24) is Dementia Action Week. Alzheimer's Society is highlighting the six most common and early symptoms of dementia. They are: Memory loss – for example, problems recalling things that happened recently. Difficulty organising thoughts or staying focused – for example struggling to make decisions, solve problems, or follow a series of steps (such as cooking a meal). Problems using words or communicating – for example difficulties following a conversation or finding the right word for something. Problems with vision – for example problems judging distances (such as on stairs) or perceiving the edges of objects and misinterpreting patterns or reflections. Getting confused about where you are or what time it is – for example, losing track of the time or date or becoming confused about where you are. Changes in mood or personality – for example becoming unusually anxious, irritable, sad, or frightened, losing interest in things, and personality changes.
Andy knew his GP and when he first approached him and told him he was worried they had an informal chat and then a formal one. He was then told to go to the memory clinic. Within weeks he had his first memory clinic appointment.
He had to carry out a number of predictive tests – things like drawing the clock or filling in the blanks. "It doesn't sound right on the clock because anybody can draw a clock. I drew a circle and I put the numbers in but the one at the top where the 12 should be. For that 10 minutes or half hour or so I didn't have a clue where the 12 went," he said.
He was fully aware something was missing and each time he tried he couldn't manage.
Then he was sent to hospital in Wrexham where his diagnosis was confirmed after a brain scan. He was told he had between five and eight years to live. Five years on from that "I'm going nowhere fast," said Andy.
The thing he struggled with most was his driving licence being taken from him. "The one thing that upset me was they took me driving licence off me literally the day after I was diagnosed. I thought: 'I could drive yesterday but I can't drive today? I've still got my faculties, I'm not making a silly decisions'. If I thought I was a threat on the roads to the road users I'd pack in myself but I've paid for a test and passed with flying colours," he said.
Andy has been working with charities across north Wales since his diagnosis
(Image: Keith Freeburn )
He has been paying for yearly assessments to keep his licence and just needs help from his son to fill the form in. "When the form comes around I say: 'Right, I'm not going to let this get me down'."
Andy has seen how much others struggle with the diagnosis. A friend who had an Alzheimer's diagnosis at the same time has since taken his own life "because he couldn't handle the fact he had a terminal illness and basically he was waiting around to die – but I don't look at it like that".
Asked how he keeps that attitude he said: "Obviously your life is going to be cut shorter than it normally would have been. But I think: 'What's the point in dwelling or self-pity and sadness? Keep doing what you were doing and if you can give help to other people.'
"There are ways to try and deal with it – the day will come when I can't deal with it but I won't be aware of it then. I'm one of these 'what will be will be' people – there's people worse off out there," he said.
Andy added: "I have what's called young-onset dementia. People expect somebody with dementia to be an old man or an old lady in a nursing home. with a walking stick or a blue rinse and it's something old people get. Since I've been doing what I've been doing I've spoken to guys at 40 and 50. It can happen to anybody."
Rachel Nelson from Alzheimer's Society Cymru said: 'Around 50,000 people are living with dementia in Wales and nearly half of them don't have a diagnosis. This means thousands of people are facing the devastating realities of dementia without access to the vital care, support, and treatment that a diagnosis can bring.
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"Getting a diagnosis can be daunting but we believe it's better to know. Alzheimer's Society research showed 97% saw a benefit in getting a diagnosis. An early and accurate diagnosis is crucial to manage symptoms, live independently for longer, and avoid ending up in a crisis."
