I could smell burnt toast but it was the symptom of something very serious
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.
Article continues below
"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.
"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.
"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.
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.
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.
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.
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'.'
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.
"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.
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.
"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.
"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.
"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.
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!
"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.
"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.
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.
"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.
"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.
"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.'
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.
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.'
Article continues below
:: To find out more about Parkinson's, visit https://www.parkinsons.org.uk
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Metro
2 days ago
- Metro
Your earwax might be able to predict if you have Parkinson's disease
Chemical differences in people' earwax may be a telltale sign of Parkinson's that could revolutionise the fight against the disease, new research suggests. Parkinson's disease, which affects physical movement by damaging the brain, is very hard to diagnose early on. The high cost of brain scans means the only widely viable method is a specialist's evaluation of physical symptoms, which develop only after significant damage to the brain has happened. Since early treatment makes a huge difference in later quality of life, experts are keen to find other ways to detect it. The idea that people with Parkinson's give off different chemicals gained traction after credible evidence emerged that they smell noticeably different. Joy Milne, a retired Scottish nurse in her 70s with a rare condition giving her heightened smell, came forward in 2016 after noticing a distinct change in the smell of her late husband when he began to develop the disease. She was able to guess 100% correctly whether randomly picked items of clothing had belonged to someone with Parkinson's. Since then, early research proved promising for a skin swab test that involves running a cotton bud along the back of the neck. Scientists believe people with Parkinson's have different levels of certain compounds in their sebum, an oily substance produced by glands in the skin. Now another potential method building on this may have been discovered by scientists from Zhejiang University in China. Since earwax is made mostly of sebum, they decided to analyse samples from around 200 people who were known to be living with or without Parkinson's. Data on the chemical make-up of their earwax was into an algorithm that correctly guessed whether an individual had Parkinson's or not 94% of the time. This was based on the levels of four specific types of compounds, which were significant regardless of each person's age and lifestyle. Two of them, ethylbenzene & 4-ethyltoluene, are known to be signs of inflammation in the brain previously linked to Parkinson's. More Trending Another was pentanal, which has been linked to accumulations of protein clumps in patients' brains that are a telltale sign of Parkinson's. The study's authors said 'early diagnosis and treatment are crucial' for treatment. It's hoped their model could lead to a chemical testing device that could be easily distributed to clinics. 'Further enhancements to the diagnostic model could pave the way for a promising new PD diagnostic solution and the clinical use of a bedside PD diagnostic device.' Get in touch with our news team by emailing us at webnews@ For more stories like this, check our news page.
Scottish Sun
2 days ago
- Scottish Sun
The strange sign in your EARWAX that can predict if you'll develop devastating brain disorder
Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) YOUR earwax could be used to predict whether you'll develop Parkinson's, scientists say, About 153,000 people in the UK live with the devastating neurological disorder, caused by a loss of nerve cells in the brain. Sign up for Scottish Sun newsletter Sign up 2 Earwax could be used to predict whether someone will get Parkinson's or catch the disease in its early stages Credit: Getty The progressive disease is characterised by symptoms such as tremors, slow movement and muscle stiffness, which slowly get worse. According to researchers Zhejiang University in China, most Parkinson's treatments only slow the disease's progression, so early diagnosis is important for managing symptoms. But current tests for spotting the disease - such as brain scans or rating scales - can be expensive or subjective, they said. Now, a study published to Analytical Chemistry suggests that earwax could be used as a cost effective way to screen people for Parkinson's. Researchers claimed they'd developed a new AI system that could help catch the disease at an early stage, using earwax samples. Previous studies have shown that changes in sebum - an oily substance secreted by the skin - could help identify people with Parkinson's. Sebum from people with the disease may have a characteristic, musky smell because volatile organic compounds released by sebum are altered by disease progression. But sebum on the surface of the skin isn't a reliable substance for testing as it's exposed to pollution or humidity, which can change its composition. However, sebum in ear canals is sheltered from the elements. Seeing as the oily substance is the main component of earwax and it's easy to sample, researchers decided to use it for their screening tool. Good Morning Britain star reveals Parkinson's diagnosis after tragic death of his wife To identify the compounds released by sebum in people with Parkinson's, the researchers swabbed the ear canals of 209 participants, more than half of which were diagnosed with the condition. They then analysed wax samples, identifying four volatile organic compounds specific to people with Parkinson's. Those include ethylbenzene, 4-ethyltoluene, pentanal, and 2-pentadecyl-1,3-dioxolane. Researchers said these could serve as potential biomarkers for Parkinson's. Using these findings, they were able to develop a system that inexpensively screens for Parkinson's. Everything you need to know about Parkinson's Parkinson's is a progressive neurological condition, meaning that it causes problems in the brain and gets worse over time. It affects around 153,000 people in the UK. People with Parkinson's don't have enough of the chemical dopamine because some of the nerve cells that make it have stopped working. This can cause a range of more than 40 symptoms, but the three main ones are: Tremor (shaking) Slow movement Rigidity (muscle stiffness) Other common signs include: Mild memory and thinking problems Trouble sleeping Issues with balance Pain Anxiety and depression Shuffling walk with very small steps Difficulty making facial expressions Loss of sense of smell Problems peeing Constipation The four main ways of managing Parkinson's include medication, staying active, exploring occupational therapy, physical therapy and speech and language therapy, and monitoring symptoms. Source: Parkinson's UK and NHS They trained an artificial intelligence olfactory system - a robotic model that can mimic how we smell - with their ear wax compound data. They found it was able to categorise samples with and without Parkinson's with 94 percent accuracy. Researchers suggested their system could be used to a first-line screening tool for early Parkinson's detection and could help improve care for condition by making it possible to administer treatments earlier. Author Hao Dong said: 'This method is a small-scale single-center experiment in China." 2 'The next step is to conduct further research at different stages of the disease, in multiple research centres and among multiple ethnic groups, in order to determine whether this method has greater practical application value.' Earlier this year, scientists warned of a surge in cases of Parkinson's. They said 25 million people across the world will be living with the debilitating brain condition by 2050. Researchers from Capital Medical University in Beijing, China, estimated that an ageing population would drive the surge in cases of Parkinson's disease over the next 25 years. According to Parkinson's UK, the condition is the fastest growing neurological condition in the world.
South Wales Guardian
3 days ago
- South Wales Guardian
Alzheimer's and Parkinson's charities identify new ways to reuse current drugs
Experts say that by repurposing drugs, they can 'increase the shots on target' at tackling the diseases. This method of drug development could also reduce the time patients are left waiting for new treatments by up to 10 years, they added. It comes after the NHS spending watchdog rejected the use of new Alzheimer's drugs lecanemab and donanemab for widespread use in the health service. The drugs were approved for use in the UK last year by the UK's medicines regulator but the NHS spending watchdog, the National Institute for Health and Care Excellence (Nice), said they could not be used in the NHS because the benefits are 'too small' to justify the cost. Now charities Cure Parkinson's and Alzheimer's Research UK have joined forces to find current drugs that may tackle some of the common biology behind both diseases. After presentations to the International Linked Clinical Trials (iLCT), which was set up by Cure Parkinson's over a decade ago, experts from both fields will select the most promising drugs for both Parkinson's and dementia, so they can be moved quickly into clinical trials. Weight loss jabs are already being investigated for their effectiveness in treating symptoms of both diseases and experts hope to uncover more drugs that can have multiple uses. Semaglutide, the active ingredient for weight loss and diabetes drugs Wegovy and Ozempic, is being examined in clinical trials to see whether it can help patients with Alzheimer's disease or Parkinson's. Trial results for the Alzheimer's trial are expected to be published later this year. Dr Sheona Scales, director of research at Alzheimer's Research UK, told the PA news agency that the iLCT project had already been 'hugely successful' with people who have Parkinson's, adding: 'Around 30% of disease modifying therapies that are in clinical trials for Parkinson's disease came through this process. 'What we wanted to do is to build on their knowledge and experience and expertise in order to be able to bring a process similar to that to Alzheimer's disease.' Dr Scales said that there are some 'common grounds' between Parkinson's and Alzheimer's – both are neurodegenerative diseases and have some 'common biological processes' – such as inflammation, mitochondrial dysfunction and 'protein misfolding' – which could be targets for repurposed drugs. 'Getting multiple drugs that are targeting the disease is really important to us,' she said. 'Testing different types of drugs and getting as many shots on target is important.' She said: 'Repurposed drugs have already been demonstrated to be safe for use in humans development of new drugs for different diseases is a long process. 'What essentially bringing repurposed drugs does, is help to accelerate the drug development pipeline – it could save between five and 10 years within that process, compared to taking a new drug through clinical trials for the very first time.' Helen Matthews, chief executive of Cure Parkinson's, said the iLCT was originally set up to identify drugs that can potentially 'slow down, stop or reverse Parkinson's'. She added: 'It was through this programme that we realised that there were so many drugs that were also being looked at in the dementia field and there were commonalities there in terms of the drugs looking to reduce inflammation, or whatever it might be, there were specific pathways that those drugs were working on that could be beneficial for both disease areas. 'So given that we were already doing the (work) every year, it made sense to join forces in this way, just to add efficiencies. 'Because if you're looking at the same drugs, we'll only do that digging once, you know, only do that compilation of the dossiers once, so that you can actually take the learning for both diseases and then actually look and see which might be beneficial.' She said that the 'sharing of knowledge and digging' could also be shared with other disease areas, such as MS. And on lecanemab and donanemab, Dr Scales added: '(These) were the first disease-targeting therapies that have been licensed in the UK, but obviously are not available on the NHS at the moment. 'They showed for the very first time that we were able to alter the course of the disease. 'And what we're looking forward to now is what the next generation of treatments can bring us and how we can target different parts of the disease.' Dr Lucy Devendra, head of research at Alzheimer's Society, said: 'Repurposing medicines which are already known to be safe can help us find new treatments for the diseases that cause dementia much quicker. 'Although it is still early days, it's encouraging to see a renewed focus on this type of research and development.'
