- She put the tingling, shaking feeling throughout her body down to caffeine
- Neurologists diagnosed her within 10 minutes with Motor Neurone Disease
A woman who put her shakes down to caffeine jitters has revealed it was actually a sign of motor neurone disease.
Nicola McFarlane, of Dunblane, Scotland, first noticed a tingling feeling throughout her body in 2022.
However, the 47-year-old had recently started a new job, so put it down to the extra stress she was under and drinking more coffee than usual.
Ms McFarlane last year began to notice a loss of strength in her hands whenever they became cold, so turned to her GP.
Within a matter of weeks, she was diagnosed with MND, of which the most common type is amyotrophic lateral sclerosis (ALS).
Ms McFarlane is now working with an MND charity in a bid to raise awareness about the condition.
Ms McFarlane said: ‘I went to the doctor because I’d started to notice muscle wastage in my hands — and of course, I’d done some Googling.
‘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.’
She was referred to a neurologist and was diagnosed with MND within a fortnight.
‘It was like getting hit by a train. There’s not really anything that can prepare you for being told you have MND,’ Ms McFarlane said.
MND is a rare condition that damages the nervous system over time, resulting in difficulties walking, speaking and breathing as the condition progresses.
Around 5,000 adults in the UK have MND and there is a one in 300 risk of developing the condition over the course of a person’s life.
Muscle twitches and a weak grip are among the early signs of MND, along with weakness in the leg or ankle, slurred speech and weight loss.
Some tremors are normal and can be caused by caffeine, stress and age.
There is no cure but doctors can provide treatments to help reduce the impact it has on a person’s life.
Ms McFarlane struggled to cope with the diagnosis and was worried about the impact the disease would have on her life.
Seeking support, she stumbled across the My Nam5’s Doddie Foundation — a charity founded by Scottish rugby player and MND sufferer George ‘Doddie’ Weir.
The athlete revealed his diagnosis in 2017 and set up his charity that year. He died in 2022. The organisation invests in MND research with the aim of finding a cure.
Ms McFarlane said: ‘After my diagnosis, I was in a very dark place, but thinking of Doddie and everything he achieved helped lift me out of it.
‘It wasn’t until a month or so after I was diagnosed, I read a quote from Doddie Weir, which said — “this is the hand of cards I’ve been dealt and I’ve just got to crack on with it”.
‘That really resonated with me. I think that his attitude and achievements, even with the mental and physical impact of the disease, gave me a lot of strength.
‘I drew huge amounts of inspiration from Doddie. When he was diagnosed, his attitude was: why isn’t there a treatment or a cure?
‘When you do have MND, you just want some hope of treatment.’
She is working alongside the My Nam5’s Doddie Foundation to raise awareness of the charity’s annual Doddie Aid fundraising event.
The campaign encourages people across the country to sign to the Doddie Aid app and log as many miles as they can of running, swimming — or even walking the dog.
The event has raised more than £4million and recorded more than 8million miles over the past two years, with profits funding research into a cure for MND.
Ms McFarlane said she plans to keep fighting for MND awareness, alongside her friends and her partner Paul van Baardwijk.
She said: ‘There’s a lack of awareness about the disease and it’s been underfunded — but this 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.’
Life expectancy is usually two to five years from when symptoms first begin.
Ms McFarlane is still working full-time but said she is aware that she will eventually need palliative care.
‘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,’ she said.
‘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.’
When people are diagnosed with MND, they are told there is no cure. However, the charity hopes to one day find one through the clinical trials that it funds.
‘As Doddie said, this isn’t an incurable disease, it’s an underfunded one. The funding of clinical trials and treatments can be possible,’ said Ms McFarlane.
‘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.’
He encouraged people to sign up for Doddie Aid to take part in this year’s event.
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
