Motor neurone disease has left me unable to speak, walk or feed myself but I’m determined to enjoy life
Nearly two years ago, Susan Fletcher Watts realised that something was a little bit ‘off’ with her speech. The then 59-year-old Patent Attorney from South Oxfordshire felt healthy enough and along with husband Brian, 62, she was still actively enjoying her passions for hiking, gliding and travelling.
But in March 2021 she noticed that she was stumbling over the odd word or two - an early sign of motor neurone disease (MND), the condition set to change her life.
"I was mispronouncing words like ‘bigger’ which was coming out as ‘bi__er’ and occasionally I’d splutter on a cup of tea or a glass of water," she says. "By May , I decided to contact my GP who asked me to come in later that afternoon as they suspected a stroke. Thankfully, that was ruled out pretty quickly once she’d talked to me in person, but I was referred there and then to the neurological department at John Radcliffe hospital."
At the hospital, specialists initially suspected a condition called Myasthenia Gravis, a rare long-term condition that causes muscle weakness. Susan felt hopeful that it could be kept under control. But after a detailed physical examination, the consultant said she suspected MND and asked her to return for another appointment, this time with the MND Neurologist in July 2021.
"I’d gone to the initial appointment alone – not expecting anything ominous – and when I heard the words ‘motor neurone disease’ for the first time, I was completely shocked, speechless," says Susan.
"I didn’t know much about it and thought it started in the limbs rather than in speech but at the time, the doctors didn’t do anything further because they had to carry out further tests to rule out other conditions before they could be certain it was MND. They said goodbye and that was it.
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“I managed to stay calm and hold it together for the drive home but as soon as I reached our driveway and Brian greeted me, I burst into tears,” she says.
Brian, her husband of seven years, remembers the moment clearly: “She got out of the car and then gave me a look and a thumbs down, so I knew straight away it was bad news,” he says. “When she told me, it was a life-changing moment. In an instant, you wonder about all the plans you’ve made for the future – what were we going to do now?”
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MND affects the nerves known as motor neurones which are found in the brain and spinal cord. Messages from the motor neurones gradually stop reaching the muscles leading the muscles to weaken, stiffen and waste. It affects up to 5,000 adults in the UK at any one time and can affect people of any age, although it is more common in the over 50s. Sadly, at the moment there is no cure.
But Susan’s family, including son Aidan, 30, and daughter Jessica 28, remained optimistic. “We are a very close family and I am very open with them so although we were worried, we hoped that it could be something else,” Susan says.
Time running out
But on 29 July 2021 – 10 days after Susan’s 60th birthday – they received the diagnosis that it was MND.
“Initially I was devastated, crying every night and thinking: ‘No, no… not me’ but you can’t live like that for long,” says Susan. “Eventually I rallied and I was determined to make the most of the mobile time I had left.
“I’ve always loved hiking and Brian and I had planned to walk England’s oldest and reportedly toughest National Trail – the 260-mile Pennine Way – when we retired in a few years’ time. I still wanted to do it but knew we’d have to accelerate my plans.
“We discussed it with my neurologist who said that if we could do the walk by the spring of 2022, then I might be in with a chance. So, we planned it for April/May. Unfortunately, as Brian had recently had a hip replaced, we knew he wouldn’t be able to walk the whole four-week walk with me so we called on lots of family and friends to join us. It really gave me something to focus on and MND wasn’t going to stop me.”
Finding a mission
The family started putting plans into place to raise awareness of MND and funds to help research a cure. As the months went by, Susan noticed her health deteriorating further.
“By Christmas I noticed I had started to drop things like the toothpaste tube due to my lack of grip and two months later, my legs began to feel wobbly first thing in the morning. I began to get anxious about managing the whole walk but was still determined to do my best.
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But adopting the motto ‘Walking the Positive Path’, Susan – with the help of more than 180 family and friends – was able to complete the incredible walk in May last year. She has raised nearly £70,000 so far.
Sadly, since her triumph on the Pennines, Susan’s health has continued to decline. In June, she required a feeding tube to be fitted and two months later started using a wheelchair. Recently, she completely lost the use of her voice and indeed was participating in this interview over Zoom, by typing her words in the ‘chat’ facility.
“Currently I cannot talk, walk, turn in bed, feed myself or do any of my personal hygiene routine unaided,” she says. “But I can still read, just about type, think clearly and play bridge – as well as press the TV buttons for my weekly dose of Strictly.
"I’m incredibly fortunate with all the support I receive. The MND and Palliative Care teams at the Oxford hospitals are expert and the numerous community medical professionals are always there when I need them and check in regularly. I have a giggle with my lovely carer, Nicky who comes every weekday morning. My family and friends have been amazing, with my sister Gill and my children Aidan and Jessica staying weekly to help out.
“But above all my wonderful husband Brian is with me night and day, except for Wednesday evenings when a local friend comes and ‘Susan-sits’ so Brian can escape for a well-deserved game of football and beer with his pals. A disabling disease is highly stressful, especially when you have been highly independent, and does put a strain on relationships. I find the best thing is to focus on activities you can still enjoy together, and don’t be embarrassed about getting a carer. Brian and I are still going strong!”
Seeking a cure
Susan says that although she often cries with frustration, there is still plenty to smile about.
“We simply want to help all those affected by MND now and in the future,” she says. “I have become a trustee of the MND Association, the main charity for the disease in England.
“Although you can't be certain, I'm told I have about another six to eighteen months to live which is tough to hear, but really, what can you do about it? We need to find that cure!”
For more information, visit the NHS website.
For support, you can visit the Motor Neurone Disease Association or call the Brain & Spine Foundation on 0808 808 1000.
To donate to the Motor Neurone Disease Association, visit Susan's Just Giving page.