By Alex Matthews
A lorry driver who lost his cab after grabbing a cup of tea has described how his life was turned upside down by an Alzheimer’s diagnosis – but he is still able to drive.
Terry Jones, now 59, worked as an HGV driver his entire life and was driving all over the UK and Europe covering tens of thousands of miles every year.
But he began to struggle badly with his memory, forgetting which jobs he had been on earlier in the week and having to call his wife Tina for directions if ever he ran into a diversion.
After he lost his cab for five hours when he left it to go and grab a brew his wife demanded he got for a test to establish what was wrong.
In May 2014 at the age of 56 he was given the devastating diagnosis of young-onset Alzheimer’s, a moment in which he said his life ‘completely came to a halt’.
But after a year of struggling with his diagnosis he is now determined to show others that Alzheimer’s doesn’t mean the end of the road.
With his wife Tina, 56, writing down every daily task on a whiteboard – from shopping to family visits – he is able to live a comfortable life and even enjoy camper van holidays.
And while he has given up his job driving professionally he is still able to get behind the wheel, having been passed to drive every year since his diagnosis.
Terry from Blackburn, Lancashire, said: “I thought being given the diagnosis would be the end of everything.
“Everything around me just seemed to stop and I didn’t say a word to my wife on the way home.
“But it is really important people realise it’s not like that at all. Alzheimer’s is a condition you can live with.
“I had my first signs of problems eight or nine years before the diagnosis, but it was little lapses in memory we put down to stress or working 100 hours a week.
“But when I was 52 there were bigger problems, such as repeating myself or needing to be reminded of jobs I had just completed.
“I used to make up nicknames for the other drivers so I could remember who they were because their names wouldn’t stick.
“One of drivers became my best mate but he never asked me what was wrong. Every time I didn’t know where I was going I would just call him and he would tell me even if I had been there the day before.
“I had to start writing everything down, something I still do now to cope, and the folder just got bigger and bigger.
“Then one day I was away and I lost my truck in Hastings. I had a pick up and went for a brew, when I came out I couldn’t remember where I had left the truck, who I drive for or anything.
“When I finally found it after five hours I had 90 missed calls, one from my boss and 89 from Tina, and I knew I had a problem.”
Tina, who is now a full-time carer for Terry, said: “We went to the doctor after he got back from that trip and after 10 minutes he referred us to a memory clinic.
“When I say to people Terry was 56 when he was diagnosed they are shocked. At 10:15am he was a truck driver and at 10:40am our lives had completely flipped.
“Life is just about making adjustments. You can live well with Alzheimer’s.
“People think it’s funny us having a whiteboard in the living room but it doedoesn’t bother me anymore. I write down everything we are doing that day for Terry so he knows.
“We have a campervan for going on holiday while we still can and Terry still drives. We are thinking about going abroad soon.”
Since his diagnosis, Terry has joined several medical trials conducting research into young-onset Alzheimer’s.
Medics from the trials have informed Terry that his Alzheimer’s has not progressed much since his diagnosis.
He and Tina, who have been together for more than 30 years, are thrilled they are getting more time together.
Tina said: “Attending the trials has been really useful because it’s allowed us to keep track of Terry’s brain.
“The Alzheimer’s is not progressing quickly at the moment which we are very thankful for.
“I first met Terry when I was meeting my friend and he was staying with his sister and noticed me walking into the building.
“He asked my friend who I was and two weeks later he turned up at my door with a Tesco bag and asked to move in with me. It really was love at first sight.
“You don’t expect at 56 to have a husband with Alzheimer’s but we are still able to live well.
“We would urge anyone who has concerns about a family member’s memory to get checked out, because a diagnosis does not mean it’s the end.”
Terry also attends a café and meeting group for people with young-onset Alzheimer’s after finding there was limited support for people of his age.
According to Terry, after he was diagnosed he was given information about writing a will and little else, and most other dementia groups he attended were full of people older than him.
The café meet-up Terry attends is called Freshers’ Café in Lytham, Lancashire, and is run by fellow Alzheimer’s sufferer Peter Lyttle.
Terry said: “It’s not just grandparents being diagnosed with Alzheimer’s now, it’s the parents too. But we’re still stuck thinking everyone is old.
“The first dementia café I went to the staff spoke really loudly and they played Vera Lynn and I realised there was nothing for my age group.
“I heard about Peter’s group after finding him on the internet. Everyone there is of a similar age and we all hit it off.
“We have similar things in common, such as music tastes from the 70s rather than the 40s or 50s and I think it’s brilliant.
“It really makes all the different having people you can talk to who are going through the same thing as you.”
FACT BOX: WHAT IS YOUNG-ONSET ALZHEIMER’S
– People with dementia whose symptoms started before they were 65 are often described as ‘younger people with dementia’ or as having young-onset dementia.
– There are estimated to be at least 42,000 younger people with dementia in the UK. More than five per cent of all those with dementia.
– Young-onset dementia is also more likely to cause problems with movement, walking, co-ordination or balance.
– Young-onset dementia is more likely than late-onset dementia to be hereditary. In around 10% of all people with young onset dementia the condition seems to have been inherited from a parent.
(Info from Alzheimer’s society)