I’ve always had the view that my glass is half full, so I just accept it’

GUERNSEYMAN Mark Wadley has been living with motor neurone disease for nearly two years and says he misses his bowls – the sport he loved and which kept him fit and healthy. In fact it was playing bowls that first alerted him to the fact something wasn’t quite right.

‘I’d been playing indoor and outdoor bowls for eight to 10 years as a way of keeping myself fit when I noticed I was getting weaker,’ he said. ‘I couldn’t reach the long jacks and I was also having trouble pinching clothes pegs when bringing the washing in. I put it down to old age at first – I was 67 at the time – but my doctor wanted to send me for tests.’

After trips to and from Southampton for various tests, Mark was diagnosed with MND in September 2022 but it’s been over the last year that he’s seen a rapid deterioration in his strength.

‘It affects the whole of my top body now – my shoulders down to my fingers on both sides and has got to the point where I’m so weak I can barely lift quarter of a sandwich to my mouth without having my elbows on the table to support me. I’ve got a lot weaker over the last 12 months.’

Mark has been overwhelmed by the support he’s received – both practically and emotionally from his wife of almost 50 years, Diane, as well as from the incredible MND team. ‘I’ve got Dawn [Spindler] and Debs [Robilliard], who come round as regularly as I require, and I’ve had great support from the UK. I was going over there every four months to see the neurologist, Dr Pinto, but since then I’ve found it difficult getting on and off the planes. It’s not my legs – they’re fine. But the steps are so steep to get onto the plane and I can’t support myself with my arms. I’ve got very little use in my upper body. Everything is heavy – even talking on the phone – and I have to keep my arms straight if I’m carrying anything. I just can’t lift anything up higher than waist height.’

Mark admits his life has changed beyond recognition since his diagnosis. Like many people living with MND, overwhelming tiredness turns ordinary, everyday tasks, such as changing a plug or light bulb, into a marathon undertaking. The things that most of us take for granted create the most difficulties.

‘I get up and have a shower or a wash and I have to go back to bed for an hour to recover the energy to do anything else with my day,’ he said. ‘Something you do without a second thought becomes a huge challenge. We still manage to go out and about. We’ll go and have a meal and my wife will cut up the food for me so I can eat, or we’ll go out and have a coffee. I have to be very careful with a coffee cup though if they overfill it. Eventually, MND will stop me from being able to do those sorts of things and it’s getting worse every month.’

Mark suspected his symptoms were in keeping with a diagnosis of MND, so it wasn’t a total shock. Like so many of the extraordinary people I’ve spoken to, he’s come to terms with what the future holds.

‘I’ve accepted it. Other people have got it too, probably worse than me – and we have to live with it,’ he said.

‘At least my legs are still working at the moment. I miss my bowls, especially the social side of that, but there have been no surprises. I’m deteriorating exactly as the experts told me I would.

‘I’ve always had the view that my glass is half full, so I just accept it and get on with enjoying my time as best I can.’

‘It’s about making people feel comfortable’

‘MND is the three little letters that nobody wants to hear and the impact is far-reaching. It’s not only the person with MND but their family, their loved ones, their support networks, their work colleagues – everyone around them is affected.’

The words of Debbie Robilliard – Guernsey’s dedicated motor neurone disease nurse who spends her working life caring for and supporting those living with MND in the Bailiwick to ensure they get the best possible treatment. She describes her role as ‘anticipatory’ – by which she means she’s always looking at the bigger picture of what MND patients might need, thinking ahead about what equipment might help and when it will be required. She admits it’s a role that comes with its own set of challenges.

‘There are times when it takes its toll and, I’m going to be honest, I will cry with the best of them. But I think we are proud to do our job and passionate about it – as heart-wrenchingly difficult as it can be at times. Guernsey is lucky to have such a support network and the team of professionals all do their part to make the MND journey more bearable,’said Debbie, wiping away tears as she speaks.

‘We can’t be cold and distant because this is affecting people’s lives and we are guests in their homes. We are privileged to be able to provide that care but we always go at the patient’s pace – that’s something we take very seriously. It’s about making people feel comfortable.’

The team includes nurses, physios, occupational therapists, dieticians, speech language therapists, respiratory teams and, of course, the palliative care team.

‘We can often see how the disease is going to progress before the person with it, which can be very difficult, especially when we have to suggest equipment they may need to think about,’ said Debbie.

‘Things can change very quickly – one minute we’re looking at a walking stick, the next a four-wheeled walker and then a powered wheelchair. Suddenly your home becomes filled with equipment that’s alien to you, but it’s crucial to allow the person with MND to live independently and to live well – to be supported and to save their energy.’

As part of her role, Debbie has been working with the visiting consultant neurologists, Dr Basil Ridha and Dr Esack, compiling detailed data on Guernsey’s MND statistics. They believe there may be some evidence to suggest the island has a higher than ‘normal’ rate of MND, and other neurological diseases. In the UK, you’d expect one to two people per 100,000 to be diagnosed with MND. In Guernsey, there are currently around 13 in a population of just over 63,000. The reasons behind this are – as with so many things MND-related – unclear, but by getting a snapshot of the situation they can look at ways to improve the service still further.

‘MND is an intensive condition that takes a lot of time and needs a lot of our input. The data we’re collecting will help us look at how we can keep getting this right for people with MND, justifying what we are doing but also giving us the chance to see whether Guernsey’s figures are higher than the expected norm and to plan for the future.’

In the meantime the focus remains on providing as positive an MND journey as possible for those living with the disease in Guernsey.

‘We are as emotional as the people we’re looking after and we get to know them and their families. We share their highs and their lows – their moments of distress – their moments of happiness. We celebrate the wins and we take the lows on the chin. But we are – in that moment – absolutely crucial to what the person with MND needs or wants.’

• 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