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Steph Houghton gives update on Stephen Darby’s battle with motor neurone disease

Steph Houghton gives an update on Stephen Darby‘s battle with motor neurone disease, speaking in an interview with The Guardian.

Stephen Darby, 36, started his career with Liverpool’s academy before going on to play for the likes of Swindon, Notts County, Rochdale, Bradford and Bolton.

But he retired from football in September 2018, and was diagnosed with MND in the same year, finding out three months after their marriage.

Stephen Darby has been actively involved in raising awareness and funds for MND research through the Darby Rimmer MND Foundation, which he co-founded, showing his resilience and commitment to making a difference despite his condition.

Daily activities have become more challenging for Darby, yet he always remained positive, viewing the effort required as a privilege because it indicated that he could still perform these tasks.

MND can prevent a person of their movement and speech while also making it difficult to swallow.

In the last few months, Darby’s condition has deteriorated, having percutaneous endoscopic gastrostomy surgery, which implants a feeding tube to allow his body to receive all the nutrients and sustenance it needs.

“You want Stephen to be living a normal life as much as possible, to be able to eat as much food as he can and get that calorie intake on board,” Houghton said in the interview.

“Over the last few months it became a bit risky having food and that’s when the decision had to be made. We need Stephen to keep weight on and to eat. It hasn’t been a great few months because these decisions are life-changing and it takes a lot of time to get used to. But ultimately it’s the best thing for him. It allows him to relax a bit more.

“There are good and bad days but I think we’ve adapted really well over the last six years. It’s obviously a tough ride but I want to be honest about the actual process and spread awareness of the disease. It’s so important we discuss the reality of MND so we can potentially help people in the future.

“In the first few years it was so hard to take in. You don’t want to believe it because you’re like: ‘Why us? We’re only young and Stephen should still be playing football. It’s not fair.’ But the more you dwell on it, the more that it harms you. So I’ve learnt how important it is to be positive.”

Darby made sure Houghton continued her playing career after he was diagnosed with MND.

“That shows how unselfish he is because he easily could have said: ‘I need you here all the time.’ I would have done it in a heartbeat. But he knew how much football meant to us and my career was not over. Even since I’ve retired he’s just so supportive. We make joint decisions so that we can move forward with my work and his foundation.”

They have long considered starting a family and Houghton says: “I’ve always wanted to be a mam, and Steve’s always wanted to be a dad. So it was always in our plans that, as soon as I stopped football, we would potentially try.” Houghton looks up as a tangled smile crosses her face. “But life gets in the way sometimes, doesn’t it? We’ll see what happens.”

Houghton keeps herself busy, than ever before, all while caring for her husband, saying she is “very grateful that I’ve done work at Sky and I have my Man City ambassador role, coaching and a podcast [on women’s football] with Ian Wright. When I’m going to games or having to stay overnight I feel a little guilty because I’m not with Stephen.It takes a lot out of you emotionally”.

“These last few months have been challenging because you always have that worry in the back of your head if you’re not there and something happens. You just want it to be OK but I think we’re getting into more of a routine. Our families have been absolutely unreal as we’ve got such a good support network. It allows me to do what I need to do and for Stephen to have the best possible care.”

Ex-footballers Stephen Darby and Marcus Stewart open up on their battle with MND

ABOUT MND AND SUPPORT (per the NHS website)

Motor neurone disease (MND) affects the brain and nerves and causes weakness that gets worse over time.

There is currently no cure for MND, but there are treatments to help reduce the impact it has on a person’s daily life. Some people live with the condition for many years.

MND can significantly shorten life expectancy and, unfortunately, eventually leads to death.

Symptoms of motor neurone disease happen gradually and may not be obvious at first.

Early symptoms can include:

– weakness in your ankle or leg – you might trip, or find it harder to climb stairs

– slurred speech, which may develop into difficulty swallowing some foods

– a weak grip – you might drop things, or find it hard to open jars or do up buttons

– muscle cramps and twitches

– weight loss – your arms or leg muscles may have become thinner over time

– difficulty stopping yourself from crying or laughing in inappropriate situations

– Who gets motor neurone disease and why

Motor neurone disease is an uncommon condition that mainly affects people in their 60s and 70s, but it can affect adults of all ages.

It’s caused by a problem with cells in the brain and nerves called motor neurones.

These cells gradually stop working over time. It’s not known why this happens.

Having a close relative with motor neurone disease, or a related condition called frontotemporal dementia, can sometimes mean you’re more likely to get it.

But it does not run in families in most cases.

You should book an appointment with a GP if you have possible early symptoms of motor neurone disease, such as muscle weakness. It’s unlikely you have motor neurone disease, but getting a correct diagnosis as early as possible can help you get the care and support you need.

You should also see a GP if a close relative has motor neurone disease or frontotemporal dementia and you’re worried you may be at risk of it. The GP may refer you for genetic counselling to talk about your risk and the tests you can have.

It can be difficult to diagnose motor neurone disease in the early stages.

There’s no single test for it and several conditions cause similar symptoms.

To help rule out other conditions, a neurologist may arrange:

– blood tests

– a scan of your brain and spine

– tests to measure the electrical activity in your muscles and nerves

– a lumbar puncture (also called a spinal tap) – when a thin needle is used to remove and test the fluid from within your spine

As mentioned, there is no cure for motor neurone disease, but treatment can help reduce the impact the symptoms have on your life.

You’ll be cared for by a team of specialists and a GP.

Treatments include:

– highly specialised clinics, typically involving a specialist nurse and occupational therapy to help make everyday tasks easier

– physiotherapy and exercises to maintain strength and reduce stiffness

– advice from a speech and language therapist

– advice from a dietitian about diet and eating

– a medicine called riluzole that can slightly slow down the progression of the condition

– medicines to relieve muscle stiffness and help with saliva problems

– emotional support for you and your carer

How it progresses

Motor neurone disease gets gradually worse over time.

Moving around, swallowing and breathing get increasingly difficult, and treatments like a feeding tube or breathing air through a face mask may be needed.

The condition eventually leads to death, but how long it takes to reach this stage varies a lot.

A few people live for many years or even decades with motor neurone disease.

You might prefer not to know how long you might live. Speak to a GP or your care team if you want to find out more.

Having motor neurone disease can be very challenging for you, your friends and your family, to be sure to seek support, speak to a GP or your care team if you’re struggling to cope and need more support.

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