MND and 24 year-old me

Lucy Lintott is a charismatic, funny young woman. At the age of 19 years old, Lucy’s life took a turn that nobody expected: she received a diagnosis of motor neurone disease (MND). As the youngest person in Scotland to live with the condition, this is Lucy’s fight.

Growing up consists of adventures, experiences, and meeting new people.

It was this passion and excitement to discover more of the world, as all teenagers do, that spurred Lucy Lintott on to work in America for the summer.

Prior to her adventures overseas, Lucy was experiencing the initial symptoms of MND. “My symptoms where weakness in my left hand and foot, falling over a lot,” emphasises Lucy.

“Slurred speech and twitching muscles,” it didn’t take long for Lucy to receive her MND diagnosis.


After returning from America, Lucy noticed her symptoms had started to take more physical forms.

Finding it challenging to open her left hand for long periods of time, walking on her toes on her left foot, facing vibrating muscles when sitting or standing: in 2013 Lucy’s road to diagnosis began.

“My journey to getting diagnosed with MND was incredibly quick, it was a week between seeing the neurologist and going into hospital to getting the diagnosis,” remembers Lucy.

“The diagnosis impacted my life quite dramatically, after a bad fall which ended with me in A&E I moved back home and gave up studying business.”

Receiving the diagnosis of MND at aged just 19 meant that Lucy was now the youngest person in Scotland to be diagnosed with the condition.

MND is the term used for a group of diseases that affect the nerves in the brain and spinal cord that tell your muscles what to do.

Unfortunately, at present, there is no known cure for MND.

Lucy adds: “I had never heard of MND before I was diagnosed. Which I’m extremely grateful for because being naive about the condition at the start meant I could stay positive, which I definitely needed.”

Upon receiving her diagnosis, it was the love, support, and guidance of friends and family that helped Lucy adapt to her diagnosis.


“My family, friends and my community are without a doubt my rock,” enthuses Lucy.

“During the toughest times over the past five years it’s because of them I have carried on going. Having such an amazing support system is incredible and I’m forever grateful and humbled to have them fighting beside me.”

Alongside, the care and guidance of family and friends, Lucy – and others living with MND – are supported by various health professionals, charities, speech and language therapists, and occupational therapists.

Despite the challenging nature that comes with having a terminal condition, a strong support system is imperative to helping people through the dark times.

A light of community and companionship was turned on for Lucy with the help of the internet.


Lucy explains: “Needing to let my family and friends in, while trying to push them away because I was struggling to come to terms with my diagnosis, was why I started my blog. I’ve carried on blogging because I need it to sort out my head.”

Through her blog, Lucy’s Fight, Lucy has detailed her journey over the last five years: from diagnosis, fear and relationships, travelling, to getting confident.

“Ever since I can remember I’ve been open and honest. If I’m going to write about myself and my life I’m not going to pretend I’m okay when I’m not,” says Lucy.

“It would be like lying to myself because when I write I’m constantly re-reading and making sure I’m true to my word. Each piece has a part of me in it so it has to be open and honest.

“We definitely need more honesty in the world.”

Alongside sharing her thoughts, feelings, adventures, and apprehensions: Lucy is raising awareness of MND in a bid to change the perspective of terminal illness.

Through her charity work and achievements in her personal life, Lucy is not being left behind.


Lucy and her family during a ball to raise funds for MND

Everyone has goals, dreams, and aspirations they want to achieve in their lifetime. Like many others, it is common to continually put them off. Lucy is no different.

After speaking with a close friend who encouraged Lucy to write down her bucket list, Lucy had 45 goals she wanted to achieve.

Visiting Paris, swimming with dolphins, to raising £100,000 for MND: Lucy has already achieved a lot from her bucket list, plus more. And is determined to keep going.

The future of people living with MND is uncertain, but Lucy is working hard to show others what life with the condition entails, alongside what can be achieved.

Starring in her own BBC documentary, MND and 22-Year-Old Me; speaking to 12,000 Scottish students as an inspirational speaker; continually raising money for MND; and winning countless awards – Lucy is not letting MND hold her back and with her infectious personality and compelling journey she is living her life to the full.

“Keep fighting it, don’t give up,” emphasises Lucy. “If you listen to yourself you’ll know what your body needs.

“Also, just know that MND sucks – but it’s not who you are. Don’t let the diagnosis steal your identity. Your still you. Asking for help doesn’t make you weak it means you’re strong enough to show that you are vulnerable and human because everybody needs help.”

Her advice for others?

“Never put off for tomorrow, what you can do today.”

Follow Lucy’s journey through her blog, Lucy’s Fight and get MND support from MND Association.

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