‘It’s hard thinking that you’re not going to be there to see how well you’ve done bringing them up’

I MEET Alex and Abbie Duncan on the kind of evening February is famous for – murky, wet and frankly inhospitable. It made the warmth and love emanating from their home on a busy weekday teatime all the more striking. A riot of family life, Abbie was rushing out to pick up a prescription before the chemist closed – leaving me time to talk to husband Alex, who revealed he’d brushed off his initial symptoms as a bad night’s sleep.

‘I was reaching for the coffee my diligent 15-year-old son had made for me to make sure I’d get him to school on time,’ he said. ‘I leant over the bed to pick up the coffee and it just fell out of my hand. I didn’t really think anything of it. I thought I’d slept on it funny – trapped a nerve – but after a week it wasn’t getting better so I thought I better see my GP.’

After some basic tests and an X-ray, Alex was told there wasn’t anything visibly wrong but to come back if there were any future problems. Meanwhile, he and Abbie had become aware of another local GP with wider experience of neurological disorders and, when the symptoms didn’t ease, they made an appointment to see him.

‘He did some basic diagnostic tests like pushing and pulling and hitting a hammer on my knee,’ said Alex. ‘And then his head fell into his hands. He said don’t be afraid but I’m going to refer you for more tests as I have some real concerns.’

Private health insurance meant Alex got seen at the National Centre for Neurology in London within days, but a whole raft of invasive and, in Alex’s words, traumatic and painful tests were needed before any diagnosis could be confirmed.

‘I was a physical and emotional wreck and the journey back to Guernsey was very difficult. About two weeks later we went back to hear the diagnosis but the neurologist said to bring Abbie so I knew then it was bad.’

Alex’s wife Abbie has had what many would see as her fair share of personal tragedy. In the 15 years she’s been married to Alex, she lost her sister Aimee to brain cancer and then her mum, former States deputy Jean Pritchard – again through brain cancer.

‘When we went to the neurologist, I knew straight away,’ Abbie said.

‘That look. Having been through that with my sister and my mum, I just knew. It was such a massive shock and the journey home was a blur but life at home was just carrying on as normal. I felt it was my responsibility to tell our kids and it’s one of the toughest things I’ve ever done.’

The sheer hopelessness of MND can prove unbearable for some patients. But the Motor Neurone Disease Association is using money raised locally and nationally for a number of trials – and Abbie admits Alex’s involvement has been a game-changer. Despite the difficulties with travelling to London to take part in the trial, Alex said it allows them to feel they’re part of something positive.

‘It’s extra hope – that’s what I believe. Every day I take four big red pills and they’re saying after six months they’re very hopeful this could stop the disease from progressing. I’m five months in and whenever I feel my condition has improved – however slightly – I think, just maybe it’s working. I would be happy with just an extra few years’.

There’s no right or wrong way to deal with motor neurone disease. Everyone’s symptoms are different and the way it affects their mental health also differs hugely. Having children, Fin and Fraser, is what keeps Abbie and Alex going.

‘It’s hard thinking that you’re not going to be there to see how well you’ve done bringing them up – how happy they’ve become,’ Alex admitted.

‘I’m sad I won’t see how different things might have been if I hadn’t been diagnosed with MND. Both boys continue to do brilliantly at school. Fin has reacted with positivity, empathy and caring but Fraser is struggling and has become more withdrawn. It may be a defence mechanism – I mean, it’s not easy being 12 at the best of times. The power of having kids is the single most positive thing I could have done though. I think you’d be talking to a very different Alex if I was single and didn’t have children.

‘You have to keep going and it’s tough,’ said Abbie. ‘The other day Fin asked me out of the blue how long Dad has got to live and I get that all the time. The cruel thing is you can’t guarantee anything – you can’t give them an answer.’

For Alex, coping with the diagnosis and the longer-term impact of his illness has been helped by finding time to study the stoics. ‘I read a book called Meditations by Marcus Aurelius and it’s reinforced a certain sense of arrogance that I had a well-tuned mind to be happy and to make the people around me happy,’ he said.

‘The book says there’s no point in allowing your emotions to be controlled by things you can’t control because it will only make you less happy. And what’s the point of life other than being happy and making those around you happy? It’s reinforced my attitude to life.’

So for now, Abbie and Alex are working hard to protect their children and to live as full a life as they can in whatever time they have together. And Alex’s message to anyone who’s diagnosed with MND is simple.

‘Cry your hearts out now. Get it out of your system because it’s not what you think it is and you are going to realise that life has not ended yet. You can carry on – you will have probably the most joyful few years you can ever imagine. So cry and cry and cry but don’t worry, you’re going to be absolutely fine, and you’ll realise that quite quickly.’

• For more information about MND and where to go to for help, visit www.guernseymotorneurone. co.uk. You can also contact Susie at susiehunt2024@gmail.com

MND – THE WARNING SIGNS

MND is NOT a common disease and many of the signs and symptoms below are likely to be the result of another condition, injury or illness. As with anything worrying though, if you are concerned, please see your GP.

• Tripping and muscle wastage in one or both legs. ‘Foot drop’ can be an early symptom of MND, where one foot sometimes feels weak or drags. Muscle wastage can lead to trips or falls.

• Dropping things due to weak or stiff hands. This can be age-related or be caused by a trapped nerve but if you drop things or find it harder to grip this may indicate MND or a neurological problem.

• Tiredness. If this is your only symptom it’s unlikely to be MND. Extreme tiredness normally happens when other MND symptoms have become more obvious.

• Slurred or faint speech. This happens when facial or throat muscles weaken, or if you feel breathless and cannot support the volume of your speech.

• Swallowing or breathing difficulties. These can be caused by MND but aren’t always.

• Emotional outbursts (known as emotional lability). Unpredictable emotional responses such as uncontrollable laughing when upset, or crying when happy, can affect people with MND.

• Changes to thinking and behaviour. Known as cognitive changes, these affect up to half of those diagnosed with MND and can increase as the disease progresses.

• Muscle twitching (or fasciculation). This is normally only present if you have other MND symptoms as well.

• Tingling, pins and needles and/or numbness in hands, feet or limbs. These are not associated with MND but may be a symptom of another neurological condition.