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Scots nurse sat in lecture on MND unaware she already had the disease

14 January 2025

A Scottish nurse forced to retire in her twenties after being diagnosed with motor neuron disease (MND) has described sitting through a lecture on the condition unaware she was already living with the illness.

Sheree Gregg, now 34, from Inverness, was just 28 when she received her diagnosis in 2019, making her one of the youngest people in Scotland living with MND, and the youngest in the Highlands. The diagnosis, which came following 18 months of tests to rule out other potential illnesses, eventually ended her nursing career and many other aspirations, including buying a home, playing guitar in a band, advancing her nursing career, and travelling the world.  

Despite her medical training, the possibility that she had MND did not initially cross her mind. Early symptoms, such as weakness and tingling in her left arm, were attributed to other conditions, including a pinched nerve or multiple sclerosis. Even during a university lecture on MND, she didn’t allow herself to confront the idea.

“I remember sitting in the front row during that lecture,” she said. “My left arm was already weak, and my muscles were twitching. It felt surreal, like the lecturer was describing exactly what was happening to me, but I couldn’t bring myself to say anything.

“I spent hours in the library, looking up symptoms in medical journals, and MND kept appearing. But I ignored it. I didn’t want it to be true.”

When her diagnosis was finally confirmed, Sheree’s medical background meant she understood the gravity of the situation immediately. Despite the shock news, Sheree continued to graduate with a BsC in nursing with distinction. 

She added: “Knowing the science behind MND gave me a clear picture of what was happening to my body. But that didn’t make it easier. Learning about a disease in theory is very different from living with it.”

Sheree first noticed symptoms while playing with a heavy punk band which performed regularly across the North of Scotland. A talented guitarist and a fan of bands such as Deep Purple and Led Zeppelin, she realised her left hand was struggling to keep up with the demands of her music.

“Music was a huge part of who I was,” she said. “I’d played live since the age of 15, and I loved performing, the energy of being on stage, and the connection with the audience. Giving it up was heartbreaking, but I had no choice.”

Nursing, which became her calling after working in care roles, also fell victim to the impact of her disease. As her symptoms worsened, she struggled to perform tasks like putting on sterile gloves and encountered discrimination and a lack of support from some colleagues.

Sheree’s diagnosis also brought a loss of independence. She gave up her driving licence two and a half years ago and now relies on her parents, Linda, 62, a retired nurse and Sheree’s carer, and Jim, 63, who still works full-time as a plant operator, for support.

“My diagnosis made me feel like I was failing at my job, and that was devastating because nursing was my passion,” she said. “Losing my ability to drive took away a big part of my freedom. It’s difficult to explain just how much that impacts your life. It’s the small things you lose – cooking, cleaning, washing – things everybody may take for granted. My parents have been amazing, but it’s hard for them.” 

Despite these challenges, Sheree has found new sources of joy. Earlier this year, she completed the 10K at the Loch Ness Marathon in memory of friends she had lost and those still fighting MND – one of her ambitions post diagnosis. Thanks to a ‘Timeout' grant from My Name’5 Doddie Foundation, she has also adapted her gaming controllers to continue enjoying video games. 

Despite all MND has taken from her, it has also led Sheree to a new-found love of horse riding, taking weekly lessons at Chapelton Stables, where she has bonded with horses Leo and Oden. Riding has become therapy for her, with medics saying it is helping her cope with MND by improving her physical and mental health.  

“Horse riding has been a real turning point,” she said. “It’s my happy place every week. It’s helped me regain some muscle strength, improve my posture, and feel a sense of freedom I thought I’d lost. The horse is essentially my legs – it can run when I can’t. It’s therapeutic and gives me a sense of progress and accomplishment. I have a slow progressing form of MND, and doctors have said my horse riding is helping me live better with it.” 

Sheree is sharing her story for Doddie Aid 2025, a mass-participation event raising funds for My Name’5 Doddie Foundation, which supports people living with MND and funds research into the disease.

“Organisations like My Name’5 Doddie Foundation have been a lifeline,” Sheree said. “They provide grants, support groups, and take so much stress off our shoulders.

“I didn’t know much about Doddie Weir before my diagnosis, but I’ve come to appreciate what an incredible man he was. He raised so much awareness and funding for MND research. I wish I’d had the chance to meet him.”

Reflecting on her journey, Sheree said she has only recently come to terms with her diagnosis.

“I’ve gone through the grief cycle many times, and only recently have been able to accept my diagnosis,” she said. “I’ve met so many wonderful people in the MND community, but losing them is incredibly hard. Many fought tirelessly to raise awareness and funds.

“We need more research and more funding to find a cure. Doddie Aid 2025 is the perfect opportunity for everyone to contribute. There isn’t much that can be done following an MND diagnosis right now, but that will change. There is hope, and it’s up to all of us to make that hope a reality.”

To sign up for Doddie Aid 2025, visit app.doddieaid.com.

A woman in her early thirties - Sheree Gregg is sat on top of Leo, a black and white horse, at a riding school. Sheree is wearing a My Name'5 Doddie Foundation t-shirt with yellow and blue tartan trim, and riding hat with My Name'5 Doddie Foundation headband placed around it.
Scots nurse sat in lecture on MND unaware she already had the disease
Sheree and Leo
Sheree and Leo
Sheree graduated as a nurse despite her MND diagnosis in her final year.
Sheree graduated as a nurse despite her MND diagnosis in her final year.
Sheree playing her guitar
Sheree playing her guitar

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