'I thought symptoms were too much coffee but truth was much worse'
A woman who thought her shaking hands were due to too much coffee was left stunned when she was diagnosed with Motor Neurone Disease (MND).
Nicola McFarlane first noticed symptoms in 2022 after getting a tingling, shaking feeling throughout her body. She also had a slight loss of function in her hands when they were cold. The 47-year-old had started a new job at the time so put the changes down to the extra stress and drinking more coffee.
But in 2023 she began to notice a significant loss of strength in her hands and so sought medical attention. Neurologists nearly immediately diagnosed her with MND. Nicola 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.
Nicola wants to spread awareness about the reality of living with the disease (No credit)"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.
"It was like getting hit by a train. There's not really anything that can prepare you for being told you have MND. Motor neurone disease, or MND, is a rare condition that damages the nervous system over time, resulting in difficulties walking, speaking and breathing as the condition progresses."
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Nicola, a passionate horse rider and nature enthusiast, found it hard to come to terms with her diagnosis and the changes it would bring to her life. She found solace in the My Nam5's Doddie Foundation a charity set up by Scottish rugby star and MND patient George "Doddie" Weir.
Doddie shared his diagnosis in 2017 and established his charity that same year. The main goal of the organisation is to fund research into the disease, hoping to eventually find a cure. Despite Doddie's death in 2022, his charity's work and his dream of eradicating the disease continue to inspire many, including Nicola.
"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,'" Nicola said.
"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."
Nicola is teaming up with the My Nam5's Doddie Foundation to share her story and encourage people to join in the charity's annual Doddie Aid fundraising event. The campaign invites people all over the UK to sign up via the Doddie Aid app and log as many miles as they can, whether it's running, jumping, swimming or even walking the dog.
In the past two years, the event has raised over £4 million through more than 8 million miles, with profits going towards research for a cure for MND - a cause that Nicola says gives her strength on tough days. "When I was diagnosed, I really didn't know if I'd still be alive by Christmas," she confessed.
"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 this is a primarily research focused charity, and that gave me some hope."
She also addressed a common misconception about the disease. "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," she added.
"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.
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"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. 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. When people with MND are diagnosed, they're told there's no treatment and no hope. Without people getting involved, donating, and raising awareness, there won't be money for clinical trials."
Nicola is determined to continue raising awareness about MND, with the support of her friends and partner Paul van Baardwijk. Paul Thompson, director of fundraising at My Name'5 Doddie Foundation, added: "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.
"Doddie Aid is off to an amazing start this year, and the wave of support from the general public as well as some of the most famous names in the world is nothing short of inspiring. It shows Doddie's enduring impact and the strength of will he ignited in the public to help in our mission to rid the world of MND."
"The money raised from Doddie Aid goes towards research into effective treatments that may one day lead to a cure for MND. There's still plenty of time to sign up for this year's event, and everybody who does is playing a part in securing Doddie's legacy. Signing up for Doddie Aid is still the best way to do your bit for Doddie."
For more information on Doddie Aid 2024, and to find out how to get involved, visit doddieaid.com.
* An AI tool was used to add an extra layer to the editing process for this story. You can report any errors to [email protected]
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