I could smell burnt toast but it was the symptom of something very serious

Wales Online

5 days ago

I could smell burnt toast but it was the symptom of something very serious
Gareth Evans would regularly show up to his work while being depressed and upset, and though he knew something wasn't right, he could not pin point the cause
Gareth Evans, 57, thinks he had lived at least 10 years with the disease before it was diagnosed
(Image: Gareth Evans )
WHEN Gareth Evans hit his mid 40s, smelling burnt toast that wasn't there and crying at work for no apparent reason were just two of the signs of a deeper health issue. Keen rugby player Gareth, who worked as a carpenter at the Cardiff and Vale University Health Board, was active and happy in his work and personal life.
But the usually cheerful and motivated worker suddenly found himself showing up to his job feeling sad, or randomly crying at work.
He would also feel his arm twitch, or smell the aroma of burnt toast.
Nothing made any sense but, as doctors soon found out, he had been living with a disease that has no cure: Parkinson's.
The depression was one of the first symptoms Gareth noticed but, without a diagnosis, he had been at a loss.
'Depression… it comes with Parkinson's,' he explained. 'I didn't understand it. I'd go into work and I'd feel very sad and I would cry.
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"I would come home and I'd cry in the shower, but I was very good at hiding it, didn't talk about it, and didn't get any help and that just got worse and worse.
"I just knew there was something wrong. I just didn't know what."
Gareth with his wife Louise who is his motivation on difficult days
(Image: Gareth Evans )
It was only when the physical symptoms started that Gareth asked for help.
The 57-year-old said: "I worked for 34 years for the health service. So I was actually at work and I looked down onto my left arm, and I could see the muscle just on the forearm… it was twitching, twitching a lot.
"I couldn't control it, couldn't stop it and I had this for a while, you know, for a couple of days.
"So actually, I went to see a friend of mine who worked in the hospital and I asked her advice and she told me I needed to get it sorted."
Gareth finally went to his GP and was referred to a consultant at the University Hospital of Wales.
He was given his diagnosis on September 21, 2018, after which he says he 'cried like a baby'.
While he now has an answer for his previous symptoms, the diagnosis and the condition itself have understandably had a huge impact on his life.
"First of all, the depression just wasn't me, because I've always enjoyed life to the full,' he said.
"The depression knocked me for a six, more so than the actual Parkinson's, to be honest.
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"But it affects me now, like 10 years on if you want to go from the diagnosis date. I can't walk properly. If I don't take my tablets, I get these terrible cramps.
"I was walking the dog one day and I forgot to take my tablet and I was stuck in the field for 40 minutes. I just couldn't move.
"It was tipping down with rain and all my muscles had seized up.
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"I had a terrible cramp and it was very, very painful. This sort of thing happens quite a lot. It affects your internal organs as well.
"It affects you bladder. So you're constantly back and forth to the toilet.
"You think you need a wee, but then you don't, and then you do, and that affects you there.
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An unfinished painting by Gareth of his wife and him together
(Image: Gareth Evans )
"But I must admit, I don't really let it get to me too much now. I'm in control of it."
Nearly 8,300 people in Wales are currently living with Parkinson's.
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The progressive neurological condition caused by a lack of dopamine in the brain.
The disease causes both motor symptoms such as tremor, stiffness, and slowness of movement, as well as less commonly recognised non-motor symptoms including sleep disturbances, memory issues, and constipation among others.
It can also sometimes lead to phantosmia – where patients perceive smells, such as burnt toast, that aren't actually there.
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In recent years, Parkinson's has come to renewed public attention as a result of Michael J Fox's campaigning on the issue. The Back to the Future star has been open about his experience with the condition, and has won awards for his advocacy for a cure for the disease.
For Gareth, once he had fully taken in the advice from experts and come to terms with the diagnosis, he felt he could move on and get back to work.
But while Gareth's return was accommodated well by his employers, in light of his diagnosis he soon had to retire upon his doctor's advice.
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Recalling how he dealt with his retirement, he said: 'The first few months, I just sat in the window, looking out at the rain, beating down onto the patio, and I'm thinking, 'Is this it? Is this what retirement is about?'
"Like I said, I'm a very headstrong person, and I've been involved in team sports all my life, mostly rugby. So you know when you're down, and you know you can do something about it.
"So, I decided to... enjoy as much as possible and get out and about if I can. Look after my grandchildren and my wife. 'It was a case of, 'it's not going to get better. So I've got to live with it and work with it'.'
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It wasn't long before he found solace in his retirement, and found surprising new ways of coping.
"I started painting, believe it or not,' he said. 'Another symptom I've got with Parkinson's is insomnia. I don't sleep very well. So I get up at night and I paint, painting by numbers.
"I find that quite relaxing. Now that you might think is strange because I've got a tremor.
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"I tremor most of the time.
"So when I actually paint, because your brain tells you to concentrate and you literally go in and you paint, the painting by number is a very fine painting. You don't tremor because you use your brain.'
One of his favourite creations is a painting of his wife's grandfather, a World War two veteran.
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He explained: 'I've got a painting on my wall in my kitchen and it's my wife's grandfather. He was just a couple of days short of 102 before he passed and I painted him and he's sitting in an armchair with his World War two medals across his chest.'
Gareth also now helps other people diagnosed with Parkinson's to come to terms with their diagnosis.
He explained: 'Funny enough, I actually do talk to people who are recently diagnosed and need help.
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"They'll come over to my house or they'll phone me. We tend to stick together, belong to a Facebook page for Parkinson's.
"We all stick together and we help each other out… talking's the best thing."
Newly diagnosed patients often went through similar emotions, he added.
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"The biggest thing is fear, knowing it's not going to get better, it's going to get worse, and there is no cure.
"The tablets I take actually work for me but, believe it or not, they've been out since the '60s annd '70s with all these tablets, they'd been around for years and years, and [doctors working in the field of] Parkinson's are trying to find a cure.
"I'm hoping come September to actually go on a trial with my consultant.
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"I've asked to put my name forward and become a guinea pig, so to speak. Because you've just got to try something, you've just got to give it a go."
Gareth has thrown his weight behind fundraising, raising significant funds for Parkinson's charities through quizzes, marathons, and rugby matches.
Earlier this month – on May 4 – Gareth raised £8,000 when he underwent a sponsored head shave and wax at the Maltsters Arms pub in Whitchurch, Cardiff.
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Gareth at the head shave and wax event with his son
(Image: Gareth Evans )
He said: 'I'll always help, no matter what charity, and if I am able to do anything, I'll do it.
"This last one, this one we've done, all I had to do was sit down and have my hair cut. It was the easiest £8,000 I've ever been involved in making!
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"I've done charity rugby games as well because, when I was first diagnosed, I wanted to raise some money for Parkinson's, so I organised a rugby game.
All the people I've been involved with over the years, coaching, playing with, playing against, they all turned up for me. We raised £1,680 that day. That was just one day.
"Another time in work, when I used to work, I used to have a 'fat club', we used to call it the 'Big Boy's Belly Fat Club' and the boys used to pay a pound a week and I would have my scales in work and I'd weigh them and I'd write their weight down on the board to encourage them for next week to come in lighter.
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"This went on for a couple of years and a lot of people got to know about it. Again, we raised money and it was all sent over to Parkinson's.'
This Friday, Gareth is organising an auction in aid of Parkinson's charity, where shirts donated by Wales rugby stars Rhys Patchell and Ben Thomas will go under the hammer.
Meanwhile, Gareth wishes people were more aware of Parkinson's and how to approach people with the disease.
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Gareth before his head shave
(Image: Gareth Evans )
Gareth with his head shaved after a charity fundraiser for Parkinson's
(Image: Gareth Evans )
He recalled: '(At) Christmas time, I went to watch Cardiff rugby play. I wasn't feeling well.
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"I couldn't explain why I was feeling like it, but I wasn't very well and I decided to leave the rugby halftime.
"My wife was picking me up in town because of my condition.
"I became so bad quickly and I didn't know what it was. I had a chest infection as well.
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"I approached a man in Queen Street and I asked him for help because I was walking with cramps and I was stiff.
"I wasn't drunk by any means but this guy thought I was drunk, and I asked him for his help. He gave me the F-word, told me to go away.
"It made me cross, because that was the first time that had ever happened.
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"So I just want people, you know, who haven't got Parkinson's, to just realise when you look at somebody and they're a little bit different to normal, just think to yourself it could be something medical.
"It could be something causing that problem.
"Give them a chance, there's always a story behind everybody.'
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In the meantime, Gareth says he's had amazing support from his family.
He said: 'My wife, she keeps me motivated. My family, my children, my grandchildren.
'I'm a very lucky man. I've got a fantastic family and I've got a fantastic circle of friends and colleagues.
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I've been fortunate enough to be recognised in work and I actually went to meet the royal family at a garden party a couple of years ago. '
Gareth added: 'I've got three granddaughters and they're brilliant, six, four, three, and 18 months — nearly two. And my wife looks after them on a Tuesday, they come here to our house every Tuesday and I sit there and I just watch them and it makes me happy because I live through them.
'You look at your children and you... You see them doing well, and you just think to yourself, 'I've done something right in life, having a good family'. That's my unit, what I call my unit. My children.'
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:: To find out more about Parkinson's, visit https://www.parkinsons.org.uk