A woman who thought her hands were shaking due to too much coffee was diagnosed with Motor Neurone Disease (MND) — and now she wants to raise awareness for the rare condition.
Nicola McFarlane, 47, had started a new job when she first started getting symptoms in 2022 — a tingling, shaking feeling in her body.
She initially put this down to the fact she was consuming more caffeine than normal, but then she began to lose function in her hands when they were cold.
By 2023 she was struggling to hold things and her hands were becoming weaker and weaker.
‘I went to the doctor because I’d started to notice muscle wastage in my hands – and of course, I’d done some Googling,’ said Nicola, from Dundee, Scotland.
‘I was having trouble with fine motor skills. I also noticed that when I was in bed and trying to fall asleep, I’d notice tingles all over my body.
‘At the time, I put it down to having just started a new job and drinking too much coffee.
‘I got referred to neurology within two weeks – and they diagnosed me with MND in ten minutes.’
The shock was all encompassing.
‘It was like getting hit by a train,’ Nicola recalled
‘There’s not really anything that can prepare you for being told you have MND.’
What is MND?
Motor Neurone Disease is a rare condition that progressively damages parts of the nervous system, according to the NHS. This leads to muscle weakness, often with visible wasting.
A famous case of MND is scientist Stephen Hawking, who was diagnosed with the condition in his 20s.
Early symptoms of MND
Symptoms of MND can start in your arms and legs, the throat, or, in rare cases, the lungs.
Symptoms include:
- A weakened grip, which can cause problems picking up or holding objects
- Weakness at the shoulder, making lifting your arm above your head difficult
- Tripping up over your foot because of weakness at your ankle or hip
- Slurred speech
- Difficulty swallowing
- Breathing difficulties and shortness of breath
- Trouble sleeping
- Headache in the morning
Nicola, who has always loved to ride horses, said she was in a ‘dark place’ after diagnoses, but thankfully she sought help from the My Nam5’s Doddie Foundation, founded by Scottish rugby player George ‘Doddie’ Weir, who died from MND in 2022.
Now, Nicola is taking it one day at a time.
‘I think that I have quality of life – I’m still working full-time and I’m not ready for palliative care, although that will come,’ she said.
‘I try and take one day at a time, and not look too far into the future, because I’ll just get massively overwhelmed and terrified.
‘It is a disease marked by loss – my whole life revolved around horse-riding, camping, wild swimming, being outdoors and being active.
‘It’s about adaptation and finding things that you can still do and enjoy. It’s very difficult.
‘Some days are a lot harder than others to be present and not be overwhelmed by thoughts of the future.’
Nicola believes that MND isn’t incurable but underfunded — and that a lack of awareness about the condition is fuelling this.
‘When I was diagnosed, I really didn’t know if I’d still be alive by Christmas,’ she said.
‘I’m still alive and very grateful that I still have independence and that I’m living my life.
‘There’s a lack of awareness about the disease and it’s been underfunded – but [My Nam5’s Doddie Foundation] is a primarily research focused charity, and that gave me some hope.
‘There seems to be a misconception that only old people get MND. It does seem to be more common in older men, but women absolutely get it and it’s not as rare as people think.
‘It’s seen as rare because people tend to die quite quickly when they get it. I think social media is full of images of people in their last stages of MND, but when you’re first diagnosed, you’re not at that stage.
‘You’ve still got time, although it varies.’
She said that MND is marked by a loss of hope, but organisations like the Doddie Foundation are doing great work.
That’s why Nicola is urging people to get involved in the charity’s annual Doddie Aid fundraising event.
The campaign encourages people across the country to sign up via the Doddie Aid app and log as many miles as they can of running, jumping, swimming – or even walking the dog.
The event has made over £4 million through over 8 million miles in the past two years, with profits funding research into a cure for MND.
‘When people with MND are diagnosed, they’re told there’s no treatment and no hope,’ Nicola said.
‘Without people getting involved, donating, and raising awareness, there won’t be money for clinical trials.
‘As Doddie said, this isn’t an incurable disease, it’s an underfunded one.
‘The funding of clinical trials and treatments can be possible.
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‘Will it be in my lifetime? I don’t know, but future generations deserve the possibility of treatment.’
Paul Thompson, director of fundraising at My Name’5 Doddie Foundation, said: ‘The outpouring of emotion and support since Nicola told her story to help launch this year’s Doddie Aid has been something to behold. She reminds us all why we are doing this.
‘Doddie dedicated his final years to pushing forward the MND cause, and we owe it to him, Nicola, and everybody living with the disease to continue his legacy and not stop until we live in a world free of MND.’
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For more information on Doddie Aid 2024, and to find out how to get involved, visit doddieaid.com.
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