A dad-of-two has told of how a change in the way he spoke led to a devastating diagnosis as he “started experiencing slightly slurred speech and muscle twitching”.
Back in November 2021, Mark Williams began to notice the changes and said he had a number of appointments with the GP from around Christmas time that year.
"I went back to the GP and a locum doctor referred me to a neurologist and ENT specialist.
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“There was a 26-week waiting list on the NHS for these services. I then had a physio session - he noticed changes in my reflexes and advised me to have an MRI as soon as possible," he added.
“This is the moment I realised that something serious was wrong and that I needed to see somebody straight away.
“I managed to get private health care in Spire Hospital in Cardiff and had an appointment with a neurologist in June. I was sent for further tests including MRI, blood tests and an EMG.
“I had a follow-up appointment in July which confirmed my diagnosis. My world came crashing down, I felt all sorts of emotions with the devastating news.”
Mark has motor neurone disease, a rare condition that damages parts of the nervous system.
As the condition progresses, people with MND will find some or all activities like gripping, walking, speaking, swallowing and breathing difficult - and with time, they may become impossible.
The 38-year-old has since spoken out about his experiences with MND, as he wants to thank his local community for their never-ending support as he and his family navigate his difficult condition.
He said it had been an extremely hard diagnosis for his family, but he had been supported by his wife Stephanie, and their two children, Niamh, age three, and Archie, age seven.
He said: “It’s been extremely hard for the family hearing the news but we’ve all kept each other going, through the tears, the laughter and the rollercoaster of emotions.
“It’s news you never want to hear, it’s tough but we’re getting each other through it. We’re a close family and we’ll stick together no matter what.”
Before his diagnosis, Mark was a full-time support worker for Caerphilly Council. He worked in the care sector for over 15 years, supporting people with substance misuse issues and young people in care.
In his spare time he also took pride in coaching mini rugby for Abertillery RFC, as his son Archie, aged seven, plays for the under eight’s.
Mark said he relied on working out and sport to maintain a positive mindset with his diagnosis. Before finding out he had MND, he climbed Snowdon in February, 2022, and recently completed Pen-y-Fan, which he said was “much to the shock of the doctors”.
He added: “I am continuing to push to the limits of this diagnosis and challenge myself daily – both physically and mentally. I hope to inspire others through my determination and positive mind set. I want to illustrate what can be achieved in the face of adversity.”
Recently, Mark travelled to Leicester to visit the Matt Hampson Foundation. There he met like-minded people with MND and said the experience made him even more determined to set new goals for himself.
He said: “On walking in, I realised I was somewhere special, the general aura of the place is breathtaking. We immediately felt welcomed and part of a family. The day consisted of motivational talks, weight training, banter, tears and lots of nice food. I left feeling even more determined to defy the odds.”
Mark's wife of six years, Stephanie, said: "The foundation does wonderful things and Mark’s goal now is to raise as much funds as he can for them, to give something back. We went up there a few weeks ago and it was life changing - the things that they do up there are just phenomenal.
“We’re going to go up there every few weeks so Mark can train with PT’s who specialise in training with people with disabilities. They provide support for people from all walks of life."
Stephanie added that they continued to workout in the gym together and Mark trained around four times a week. She said: “He’s smashing it. The mental strength that he’s showing is just phenomenal.
“He has his own page and he’s inspiring people to carry on and keep going to the gym. Mark has used his Instagram profile to share his journey and support other people with MND across the world.”
To do something productive with his time, he decided to make t-shirts with a slogan saying Motor Neurone Defiance, and the hashtag #MNDefiance has created an “online family” for support. They have sold over 500 T-shirts and current donations are going towards the Matt Hampson Foundation.
Mark hopes that by sharing his journey he will be able to inspire others and gain a positive mindset. For those who have been recently diagnosed with MND.
He said: “Spend some time absorbing the news, expect to feel very shocked and very upset but set yourself the challenge to take it on positively both mentally and physically.
“Surround yourself with positive people and family members that will help you on the long road. Aim to inspire others in the process.” He added: “Don’t ignore symptoms, see your GP - ask for a referral.”
Mark has also organised two upcoming fundraisers to raise as much money and awareness that he can for the Matt Hampson Foundation. On December 3, Mark’s two friends, Chris Stevens and Gareth Edwards, who recently ran 13 half marathons in 13 days, will be running 100km in aid of MND and the Matt Hampson Foundation.
The route will begin in Hereford at 7:00 am, where they'll make their way to Abergavenny (27 miles), up to Brynmawr (8 miles), across to Rogerstone (17 miles) and to Abertillery Park, where Mark will join them to finish the last 12 miles.
The second challenge will take place on December 17, when Mark will take on an 80km bike ride challenge with the help of a few friends.
They will begin their ride from Cwmbran, travel the canal route to Brecon, double back and finish up at the Coach & Horses in Llangynidr. To find out more or donate to Mark’s GoFundMe, click here. They’ve currently reached their target of £1,000, but they hope not to stop there.
Mark added: “The support we’ve had from all our family and friends and the whole of the valley community has been nothing but phenomenal. There are no words to say how grateful we are. So from the Williams, we want to say a huge thank you.”
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