‘I just feel every six months I’ve gone downhill another notch’

A CHANCE meeting while travelling from Ireland to Australia brought Joe and Guernsey girl Anne together.

‘I met Anne as a 20-year-old and she saw me and said, “you’re not going anywhere, you’re staying here with me”. I was such a good catch and I’ve been here ever since,’ remembers Joe with a laugh.

Married for 53 years with a daughter and four grandsons, they’ve lived in their cliff-top home for 40 years building a life together – a life that changed beyond all recognition when Anne was diagnosed with MND in March 2021.

‘I was shocked because where does it come from? Why have I got it as opposed to anyone else? But I’ve got it – lucky me – but even luckier than that they found non-Hodgkin’s lymphoma at the same time. It’s very slow growing and there’s no treatment for that, so I just wait and see and don’t think about it really,’ Anne says, adding with a wry smile and glance to the heavens, ‘somebody up there wants me badly!’

Anne has always led a very active life. A customs officer for 25 years, she played netball and volleyball for the island and still swims regularly to keep fit. But after a couple of falls and the development of a persistent limp, she knew something was seriously wrong.

‘It’s quite a cruel thing, but you know in your heart that something’s not right because falling down isn’t normal – not the way you fall – you go straight down,’ she says.

Physiotherapy and regular visits to the balance clinic didn’t help and it took more than a year of MRI and CT scans, as well as electron tests, to reveal the truth.

‘I’ve been using a walker since I was diagnosed with MND,’ she says.

‘The first year I could walk a bit on my own but then I fell and hurt my arm and now I can’t walk unaided and I struggle a little with my speech. In the last two years I’ve been to Spain on holiday and I’m going to Jersey next month. I’ve even been to Herm – that was a challenge but we always like going there. I just feel every six months I’ve gone downhill another notch. Obviously I’m going slower but then suddenly it hits me.

‘I’m still driving and I swim at the Villette Hotel twice a week but I can’t walk. I’ve got a good group of friends and a wonderful family. It’s a positive attitude and Prosecco that keeps me going!’ she laughs.

And there’s no shortage of laughter – or tears – during our time together. A wonderfully warm couple who clearly adore each other, once the shock of Anne’s diagnosis subsided, Joe’s practical side took over and they began adapting their home to meet Anne’s future needs, creating a downstairs bedroom and wet-room.

Anne is grateful her MND seems to be progressing slowly, which may be to do with her age. Despite the obvious frustrations about how long she may live, particularly with the added complication of her non-Hodgkin’s lymphoma, she’s full of praise for the incredible team of health professionals who check in on her.

‘The Guernsey Motor Neurone charity, MND nurse and occupational therapist have been brilliant,’ she says.

‘As soon as Debbie Robilliard [the MND nurse] heard about my diagnosis she was like a starburst. You get this call and that call – I’ve got all their numbers and if I need anything, equipment for example, next thing I know it’s on my doorstep. I’ve got a bed I haven’t slept in yet because they’re so organised.’

The only treatment for MND is a drug called Riluzole, which offers the possibility of a 10% improvement in symptoms. The side-effects, though, make it an unattractive prospect for many patients. Any treatment for Anne’s non-Hodgkin’s lymphoma might affect her chest and airways – critical areas for MND patients who often struggle to swallow or talk, so she’s decided against any medication.

‘My arms work perfectly so Prosecco is a much better substitute,’ she laughs. ‘I’ve had breathing tests done and I’m clear, so that’s a relief because that’s when it starts to get tricky. And I’ve had my voice banked so Joe can still hear my dulcet tones.’

Voice banking allows MND patients to record their own voice and then, by the powers of modern technology, if they lose the ability to speak they can use that technology to continue to talk in their own voice – either using a keyboard if they can still use their hands, or using their eyes.

‘Unfortunately it can’t do the housework,’ says Joe, laughing. ‘I do what I have to do, and what I can do. Some days are better than others but Anne’s still doing what she wants to do and we have to think positive. A while back there was a guy on television who’d had MND for 10 years and it was just in his arms. Then you hear of other people and it’s all over in a couple of years. It’s the unpredictability of the disease that’s so difficult.’

Mobility is an ongoing problem for Anne – and all the MND patients I’ve spoken to. The cobbled streets of St Peter Port make it a no-go area for wheelchair users – something which Anne says sends out the message that anyone with mobility issues isn’t welcome in Town. And it’s the public perception of the disability that causes upset too.

‘People look at you differently,’ Anne says, ‘not those who knew me before all this but anyone new. I met a friend who asked me how I’m doing and I said I’m walking like an old woman of 70. Oh hang on. I AM an old woman of 70. I do feel old pushing the walker. The exhaustion is unbelievable and that’s something I was never used to. I had boundless energy but that’s probably the worst of all. I won’t give into it – no way. I want to keep doing everything as long as I can.’

We talk about how, other than Stephen Hawking, few people had heard of MND until high-profile sporting figures such as Rob Burrow and Doddie Weir went public about their disease.

‘They kept Stephen Hawking alive for his brain, I reckon – but I don’t think they’ll bother with mine,’ she laughs, adding she already has a ‘do not resuscitate’ order in place. ‘First thing I said – don’t bring me back to this.’

With so much debate about whether assisted dying should be legalised both in the Channel Islands and further afield, Anne admits she’s ‘not brave enough – though she can see why people do it’.

Joe too is unsure. ‘I think if they said to Anne you have two months to live, maybe that’s different. But we don’t know – it could be 5-10 years for Anne so it really depends on how bad you get before saying enough is enough. I wouldn’t like to make that call.’

For now Anne and Joe are focusing on doing the things they love with the people who make them happy and trying not to look too far into the future. But the last word has to go to Anne and her determination not to be beaten by MND.

‘When we went to Spain last year I had to get insurance and I put on the form that I had a terminal illness. The insurance company asked me how long I’ve got and I said I have no idea – it could be tomorrow, it could be five years. They said you’re not terminal, you’re just incurable, so they insured us and away we went. I thought that was a good way of looking at it. I’m not terminally ill, I’m just incurable, and I can still drink Prosecco. So life’s not all bad.’

‘I want to promote quality of life at every stage’

DAWN SPINDLER has a touch of the Santa Claus about her. An advanced occupational therapist with Guernsey’s Community Adult Physical Disability Team, she spends her working life pre-empting and giving out the right equipment needed by those living with MND and other neurological conditions.

Her job for the past nine years, Dawn liaises with Guernsey Motor Neurone – the local charity that provides financial support and practical equipment to sufferers. And speed is of the essence when dealing with people with MND.

‘I explain to people that a week in the life of someone with MND is like a year to someone without the disease,’ she says.

‘It can change and be more or less, but waiting four weeks for a piece of equipment can be like waiting four years for those without the disease. That’s how quickly there can be a change in someone’s ability to function normally.

The equipment allows people to retain their freedom and their dignity for far longer than MND would otherwise allow.

‘I’d like to travel round in a big Winnebago with all the equipment in there and just say, “what do you need?”, like a sweet shop,’ says Dawn.

‘There’s nothing more “disabling” than having to ask someone for help with everyday movement.

‘When you’re diagnosed with a disease that’s going to be life-changing, many can’t face the thought of equipment they’re going to need. They put up barriers and see it as very institutional, hospitalised and medical – making them look “disabled”.’

By her own admission, Dawn’s first meeting with someone recently diagnosed with MND is the worst part of her job. Still reeling from the diagnosis, Dawn understands many can’t think about the future – and whether or not the design of their home will make life difficult for them. But, she says, the aim is simply to pre-empt what may be coming down the line and then make sure everything is done to allow the person to stay in their home for as long as they wish.

A role which brings you into direct contact with people struggling with MND can be emotionally draining, Dawn admits, and walking her dogs and talking things through with her colleagues is her way of coping with the day-to-day challenges. But it can also be very uplifting when you hear how big a part of your patients’ lives you’ve become.

‘For me it’s really important to gain people’s trust and build a rapport because I want them to feel able to pick up the phone to me if there’s anything they want to talk through. I often offer that support to family members too – if you need advice or you just want to talk, we’re here for you. But it is hard and I don’t feel that I’m enough.’

Many people diagnosed with MND and life-limiting conditions suffer from what’s known as anticipatory grief. They’re not only facing changes to their life plans, they’re losing their ability to move. It’s all part of grieving for the things you could do in the past and are no longer able to.

‘I think it’s important that as healthcare professionals we acknowledge anticipatory grief and work with people in their own time. We need to recognise the impact this very real grief can have on the people we care for,’ Dawn says.

‘My role is very holistic. It’s about what people’s passions are – what gives them a sense of wellbeing and makes them feel needed and purposeful. MND is one of the most horrible things you can ever be diagnosed with because you don’t know how quickly it will progress, but you do know how it will end. But they’re still the person they were before the diagnosis and it’s important we enable MND patients to continue feeling that way. It’s about having the time to get to know each other properly, to work with the patient and their family so we’re ready for whatever the disease throws at us. I want to promote quality of life at every stage and do it to the best of my ability. That’s what drives me. That’s what I try to do.’

• 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