'My husband had a couple of years to live after MND diagnosis - so he did the unthinkable'
A doctor has revealed that her husband is thriving - despite suffering from Motor Neurone Disease. NHS family GP Susie Tate met husband Andy decades ago. She fell head over heels for him when they met at medical school and the couple - who have been married for 25 years - have three children together.
They received a medical curveball when Andy started showing subtle signs of Motor Neurone Disease in 2019, and two years later he received an official diagnosis. But the 47-year-old is made of tough stuff and despite an average life expectancy of two years post-diagnosis, he's not only surviving, but thriving four years on.
Susie, 46, said: "Andy has always been very, very active. He loves rugby, tennis, golf and windsurfing but in a cruel twist, MND tends to target people who are more active. Studies have shown that people who are really active are disproportionately affected. MND gradually strips you of everything. One by one he had to gradually stop all the sports that he enjoyed."
Motor Neurone Disease is a fatal, rapidly progressing disease that affects the brain and spinal cord. It can leave people locked in a failing body unable to move, talk and eventually breathe. It kills six people every day in the UK, a third within 12 months of diagnosis and more than half within two years. It has no cure.
However, in a miraculous turn of events, Andy is running the Rob Burrows marathon today [May 11] in Leeds with 30 friends and family to raise funds and awareness for MyName5 Doddie foundation. Proud wife Susie revealed that although his upper body has lost a lot of functional movement and strength, he can still walk and even run.
"His arms have become weaker, but his legs are still strong. I'm a very proud wife. He's diagnosed with the ALS type, which is the most common, but also the fastest progressing, worst type. It's really been mostly his arms, shoulders and hands that have been affected. We were lucky in one way. The average life expectancy is actually two years after diagnosis, yet here we are."
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Despite his 'tiredness and exhaustion', Susie also revealed that Andy still coaches his son's rugby team too, and a year after diagnosis in 2022 even took part in a Guinness World Record attempt, raising over £100k. She said: "He played with his rugby team, the Sandbaggers, as they tried for the longest ever game of touch rugby on the beach at Bournemouth.
"He managed the 34 hours with a squad of 22 - he did that! It helped support the Motor Neurone Disease Association (MNDA) and the MyName5 Doddie foundation." Reflecting on first, subtle signs of the debilitating condition in 2019, Susie revealed it was actually a comical moment that led to their discovery that something wasn't right - and a moment they both still laugh about now.
'He lost an arm wrestle that he believed he shouldn't have lost. He said to me, 'listen, I'm at the pub, I lost an arm wrestle to James and I should not have lost.'' As funny as the scenario was, medical professional Andy truly believed it was the first pathological sign - and he wasn't wrong.
Susie continued: 'He started having fasciculations - muscle twitches - widespread through his arms and his shoulders, they're now quite obvious. He always knew something terrible was going on. I very much stuck to the belief that he would be fine, but he knew. We learn about some scary conditions at medical school, and if I'm honest, motor neurone disease is the most scary.
"You're gradually stripped of your ability to move and breathe. It's terrifying.' After having a nerve conduction study, called an EMG, Susie said it was apparent his nerves were not functioning as they should. Later blood tests confirmed their worst nightmare. There's not a specific test that's 100%.
"It's a process of elimination and ensuring we aren't confusing the symptoms with something else and falsely diagnosing.' Susie started her medical career over 20 years ago, spending the last 15 as a family GP. She trained in London and then spent a year with Andy in Australia working in accident and emergency.
They also worked a few years from Swansea in Wales, where Andy is originally from. By 2007, they'd moved their family to the sunny Dorset coast alongside trusted medical friends. Even throughout COVID times, the pair kept extremely busy. Susie ran a hot clinic and Andy was busy with his anaesthetics consulting in intensive care at Bournemouth Hospital.
But his hands and arms were getting weaker. Thinking at first he had an elbow nerve problem, he even went through an operation in 2020 to 'fix it'. "We carried on through COVID but by May 2021 he was formally diagnosed. He had to stop work - he had a tremor, and he knew that he was finding it difficult to hold onto the airway equipment. It was really sad because he loved his job.
'I was devastated. We're lucky to have a group of friends down here in Dorset and we've got a really great family so we had a lot of support around us, but we were completely and utterly devastated by it." The loving parents had another hurdle to cross, they had to let the children know about their dad.
'At first you want to shield your kids from it but it's not good to do that. They don't know why you're crying all the time and they think it might be them. It's really damaging to do that. For weeks we didn't tell them, but then the head at their school advised us to be more open, and it definitely helped.
'They love their dad, they want to support him and they're great boys. You don't realise how resilient they can be. They have a lot more to deal with than their friends.' In order to spend time with Andy and her sons, Susie has taken a year away from practising as a partner at her GP firm and has focused her attention on romance writing, releasing her third book, Outlier, this summer.
She's now a number one bestselling Amazon author, utilising her medical career knowledge to help tackle social, psychological and physical character issues such as loneliness and domestic violence. She said: "I started writing about 10 years ago but it was just a side hustle. A way to de-stress. Suddenly I had a big organic following and eventually it allowed me this precious time with Andy.
'Things have really taken off and I can be at home, supporting my family. I'm so grateful to the readers for supporting me and giving me time with my family. I could not have done that without the readers. They're a lovely supportive element in my life.' Whilst Susie might return to GP life one day, she reflected on how hard the profession is nowadays.
'I love being a GP but the world has changed so much in recent years. It's always been a very high workload. It's very stressful. It's like you're swimming upstream the whole time. I've known my patients for years and really care about them.' Susie believes it's likely she will need caring help in the future for Andy, but for now, she's by his side with their sons and cross Maltese dog, Gizzy.
She said: "We take each month by month, that's the best way. We can't over plan for things and we really don't know how it's going to go or our time scale. We try to live in the moment with less planning for the future all the time. We take each month by month, that's the best way. We can't over plan for things and we really don't know how it's going to go or our time scale.
'We try to live in the moment with less planning for the future all the time. Outlier by Susie Tate is published by Arndell Books and is available to pre-order now. Outlier is the third book in the Daydreamer series with Daydreamer and Gold Digger published on 1st July. All books can be read as standalone books To donate please visit www.justgiving.com/page/andy-vaughton-10
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