‘I feel like this is the card I’ve been dealt and I have to make the most of it’

BEHIND the doors of Daisy and husband Tom’s cottage, tucked away down a country lane, is one of the most brilliant examples of ‘making a building work for you’ I have ever seen.

Daisy was diagnosed with motor neurone disease in June 2020 at just 33 and her husband and dad set about transforming this traditional granite cottage into a wheelchair-user’s dream. In true Heath-Robinson style, the system of homemade ramps, ropes and pulleys make every part of the house accessible to Daisy and allow her to continue living as near normal a life as MND allows.

Daisy’s symptoms started as what felt like a strained neck and shoulder. After a raft of GP and specialist visits, as well as all the nerve conduction tests which confirmed her diagnosis, she went rapidly downhill and by January 2021 she needed a wheelchair and had started using a ventilator to help her breathe. By Easter of that year Daisy had lost all interest in food and the couple resorted to a feeding tube.

‘I was so tiny,’ says Daisy. ‘I got down to six stone. Loss of appetite is a symptom of MND and I’d always loved food and drink – our whole relationship was based on a shared love of food and drink – but I wasn’t interested in anything Tom put in front of me.’

Tom laughs, adding ‘I remember in the second lockdown you didn’t want anything – you didn’t even want wine. I thought this isn’t the woman I married! You got so incredibly thin and frail, but they put the feeding tube in and it changed Daisy’s life.’

As well as giving her the option to eat proper food – and to drink wine – it also gave Daisy her appetite back and, Tom believes, probably saved her life.

Now unable to move other than her eyes and mouth for talking, Daisy relies on Tom for absolutely everything, along with a band of carers made up of amazing family and friends. But she’s defying the normal progression of the disease. Her symptoms haven’t deteriorated any further for two years and even the specialists are amazed her MND seems to have plateaued.

‘The professor we saw never told us there was a hope of that happening,’ admits Tom. ‘I think it’s so incredibly rare and they don’t want to give people false hope. It’s only been recorded in a handful of people.’

The couple were told it may be because of where the disease started in Daisy or her young age and relative fitness.

As with so many aspects of MND, the experts just don’t know.

Tom and Daisy are both from Guernsey and met while working in the UK. A shared love of food, drink and travel meant they spent much of their lives visiting new countries – something that’s become impossible as the disease has progressed.

After she was diagnosed in Southampton, Daisy returned to Guernsey and the first thing Tom did was propose.

‘We got married within six weeks right here in our living room with our friends and family and we’re even thinking of doing it again now. He’s amazing. I couldn’t do it without him, for sure. Our last holiday was our honeymoon in Italy. I don’t think I would still be here if it wasn’t for the care that I get from Tom, my mum, from everyone. It’s just insane.’

Unlike many MND patients, Daisy is facing a much longer future now that her symptoms have plateaued, which throws up different challenges for the couple. With the potential of a much longer life expectancy, albeit a very different life from the one she led before her diagnosis, they’ve accepted their cottage will never meet the required standards to allow for home caring visits. They plan to knock down an outbuilding and build a bespoke bedroom and wash-room – a project they’re having to fund themselves, with the help of Daisy’s parents.

Now 37, Daisy says it’s her mum and dad who concern her most. ‘I don’t think too far in the future but I worry about my parents because they’re getting older and I can’t do anything to help them. I’m an only child so Tom will probably have to help, but we don’t really want to give him any more work. My parents are both in their mid-70s so that’s hard – that’s the future that worries me.’

Before her diagnosis, Daisy describes herself as a very anxious hypochondriac who’d probably cry about a bee sting. Now, though, and thanks in part to a combination of anti-anxiety drugs and medical grade CBD, she’s making the most of whatever life throws her.

‘There’s no point in feeling angry or resentful – I’d make myself and everyone around me miserable,’ she says.

‘I feel like this is the card I’ve been dealt and I have to make the most of it. We go out, have friends round, we’re always busy. There’s nothing we can’t do that we did before apart from going abroad. Everything just takes a lot of planning, some ramps and a bit of help here and there. You’ve got to count every day as a blessing,’ she laughs.

And her most important piece of advice for anyone diagnosed with MND – steer clear of Dr Google. ‘It will tell you the average life expectancy for anyone in my situation is between two and three years but I’m living proof that’s not always right.’

The impact on mental health

THE effect of a terminal diagnosis such as MND can be devastating – not just to the patient but also to their family and friends.

Watching someone you love coping with the harsh reality of the disease can prove overwhelming and deeply distressing. From my own personal experience – and many people I’ve spoken to, the total inability and powerlessness to do, or say, anything that will help, can prove too much to bear.

As with all mental health issues, it’s vital to spot the signs of deteriorating mental health early.

Guernsey Mind is a local charity which supports all islanders and it has valuable advice for anyone needing help. Be aware of the warning signs. People with poor mental health can:

• Become anxious, worrying more than usual and finding it hard to enjoy life.

• Become more withdrawn, unwilling to go out and socialise.

• Experience panic attacks and thoughts of suicide.

• Lose interest in the people and things that previously brought them joy.

How you can help someone with poor mental health:

• Show your support and don’t be afraid to ask someone how they are.

• Ask how you can help? Often people don’t want to admit their mental health is compromised so encourage them to open up to you.

• Be open-minded. Phrases such as ‘cheer up’ and ‘pull yourself together’ aren’t helpful. Try to be non-judgemental. Many people just want to be heard and there is nothing more effective or powerful than providing a good listening ear.

• l Show trust and respect and talk about the normal stuff. Few people want to be defined by their mental health.

To coin an often over-used phrase, ‘it’s okay NOT to be okay’. See your GP for more help or visit Guernsey Mind’s website (www.guernseymind. org.gg) where you’ll find lots more helpful information. Or contact the Samaritans on 116 123 – a safe place to talk any time you like, in your own way, about whatever you want, without judgement. The confidential helpline is available 24/7 and calls are never monitored or recorded. Bailiwick callers are routed to the national organisation which means there’s no chance you’ll end up speaking to someone you know. You could also email jo@samaritans.org or visit the website www.samaritans.org

• 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