ONE of the biggest challenges “chatterbox” Lucy Lintott says she has to face is the prospect of losing her voice.
“I don’t think I’d be able to handle that,” she says. “Most people know me for my weird laugh. My voice is a huge part of me.”
When she was 19 years old Lucy was told she had motor neurone disease (MND), making her the youngest person diagnosed with the illness in Scotland.
Now three years on, she is bringing people into her home to show how she has confronted the condition head-on, challenging perceptions, as well as the increasing effects the disease has on herself.
“I don’t want people to see just MND, because it’s only a small part of me,” she says, in a moving new documentary called MND and 22-Year-Old Me.
Lucy at a photoshoot with renowned photographer Rankin
Filmed over six months, the programme shows elements of Lucy’s daily life alongside her reflections on the physical impact of the illness and its ongoing psychological challenges.
As a rapidly progressing terminal illness, MND stops signals from the brain reaching the muscles which can cause someone to lose the ability to walk, talk, eat, drink or breathe unaided. There is currently no cure or effective treatment.
Lucy, from Garmouth in Moray, was diagnosed with MND after she started experiencing difficulties with her balance and co-ordination while on a gap year in America.
After her diagnosis, she gave up her college course in Glasgow, where she had been studying business, and decided to move back home.
Living back in Moray with parents Robert, 53, and Lydia, 54, Lucy can now no longer walk unassisted and has to increasingly use a wheelchair.
“The quickest way to describe it is I’m slowly going paralysed,” she says.
But even though she has been given only a few years to live, she is still determined to do what 22-year-olds do.
She said: “I think it’s important if you have a progressive illness that you have a sense of humour, otherwise you’d be in a ball crying in the corner.
“MND isn’t a death sentence. Even though your life is going to change dramatically, you can still leave a normal life.”
A country-music lover, the documentary shows her meeting with friends, discussing dating and boys, as well as getting a special backstage pass to meet her idol Reba.
She visits Newcastle to meet stand-up Lee Ridley, a comedian who can’t speak, and talks with quadriplegic vlogger Jordan Bone.
Lucy met quadriplegic vlogger Jordan Bone during filming of the documentary.
A further highlight is a photoshoot with renowned photographer Rankin, who wanted to help her challenge people’s perception of the illness to show someone with a terminal disease can look and be healthy. She also confronts her decreasing ability to speak, visiting a clinic in Edinburgh where she and her sister Laura are recorded to create a personalised synthetic voice.
Lucy and her sister Laura were recorded to create a personalised synthetic voice.
“Filming was quite exciting, but it was quite tiring as well. Watching myself I cringed so much.”
She also said she would be a little less self-critical, after watching herself on the screen.
For the past three years Lucy has also tirelessly campaigned about the disease, raising more than £120,000 for MND Scotland – “kicking MND’s butt because I love a challenge”.
This has also included blogging about her experiences and tackling a bucket list of 45 challenges, such as scuba diving, going to Australia and riding in a helicopter.
“Right now I’m just enjoying being at home, going to the gym and seeing friends and family and waiting for the documentary to come out,” she said.
“After all this is done, I’ll probably need to excitement of my bucket list again.”
Craig Stockton, CEO of MND Scotland, said: “Lucy is a bright, bubbly, inspirational young woman, who has achieved so much at such a young age.
“In the face of a devastating diagnosis she has dedicated her time to raising awareness of the illness, fundraising for MND Scotland and inspiring those around her.
“Now Lucy is inviting the world into her home.
“Her bravery to share her experience, and show people what life with MND is like for her, is extraordinary.”
MND and 22-Year-Old Me will be shown on BBC Two Scotland on Tuesday, August 1 at 9pm. To donate to Lucy’s fund-raising efforts for MND Scotland, visit Lucysfight.com.
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