Mandy's Story: Voices of MND

When Mandy first began to trip and notice weakness in her foot in 2018, she never imagined it would lead to a life-changing diagnosis. What followed was a long and uncertain journey, made even harder by the arrival of COVID-19.

“We were already going through tests when the pandemic hit,” explains her husband, Paul. “Everything stopped for over a year. It took about 18 months before we finally got the diagnosis.” In September 2021, Mandy was formally diagnosed with Motor Neurone Disease (MND).

Mandy and Paul attend regular three-monthly check-ups at the Leeds MND Clinic. These visits bring together neurologists, respiratory specialists, therapists and support staff all under one roof. “It’s a lifeline,” says Paul. “You’re not just ticking boxes. You get advice, help with equipment and home adaptations, and you feel less alone.”

At first, the couple were hesitant to meet others with MND. “You see the stories on TV and they frightened us, honestly,” Paul admits. “But once we went to an MND support meeting, we realised how valuable it was.”

Mandy eventually found connection with a very small group of other women living with MND through a WhatsApp chat. At a time when the disease can feel isolating this circle of five women became a lifeline, a safe place to swap advice, share frustrations, and simply talk to someone who understood what it means to live with MND as a woman.

They talk about everything from daily challenges to family life, keeping each other going with messages of encouragement and humour.

But sadly, the friendships came with heartbreak. One by one, every woman Mandy grew close to in that group has since sadly died from the disease. The loss has been devastating, leaving Mandy without the companions who once helped her feel seen and less alone.

“Finding other woman who understand made such a difference, I miss them...” Mandy says.

Mandy’s journey with communication has been especially challenging. Born hard of hearing, she already relied on visual and spoken cues more than most. As MND began to affect her speech, those changes made communicating even harder. “We didn’t realise how important it is to bank your voice early,” says Mandy. “It’s one of the first things the clinic recommends once you’re diagnosed.”

The couple have adapted their home to help Mandy stay independent, adding ramps and other practical changes. Paul also attends a carers’ group, where partners share advice and laughter. “You have to keep your sense of humour,” he says. “If you don’t laugh, this disease can take over.”

Mandy and Paul are looking forward to their first visit to the Rob Burrow Centre for Motor Neurone Disease for clinic.