Journeys with MND

Motor neurone disease (MND) affects everyone differently. The condition can begin in different parts of the body and progress at varying speeds. People may experience a wide range of symptoms in different orders, and not everyone will face the same challenges. This means that care and support need to be tailored to each person’s unique experience.

In this animation, we follow three individuals — Arthur, Bina, and Perry. Each has a different form of MND, and each experiences the disease in their own way.

Arthur’s journey

Arthur has amyotrophic lateral sclerosis (ALS), the most common type of MND. His symptoms began in his legs and gradually spread throughout his body. He lives with his long-term partner.

Six months after diagnosis, Arthur begins using a walking frame. By one year, he relies on a wheelchair, and everyday tasks such as dressing and preparing meals become more difficult. His partner is now his full-time carer.

At two years, Arthur starts using both a communication aid and a feeding tube. He experiences significant fatigue and breathing difficulties, and by two and a half years he is using ventilation support. Despite these challenges, Arthur remains actively involved in decisions about his care. He and his partner continue to share moments of connection and humour even as the disease progresses.

Arthur dies three years after his diagnosis, having spent his final months at home.

Bina’s journey

Bina has bulbar-onset MND. Her first symptoms are difficulties with speech and swallowing. She is married with two young children, and her rapid progression makes early planning essential.

Within three months, Bina begins using a communication aid. By six months, she needs a walking frame. As her hands are no longer free, she can only use her communication aid while sitting.

At seven months, paid carers begin visiting her at home to support her and her family. At nine months, she requires a feeding tube and, shortly afterwards, ventilation support. As her condition worsens, communication becomes more challenging and her energy levels drop.

In her final days, Bina is cared for in a hospice where she receives round-the-clock care in a peaceful, supportive environment that also provides comfort to her family. Bina dies 18 months after her diagnosis.

Perry’s journey

Perry has primary lateral sclerosis (PLS), a rarer form of MND. His disease progresses more slowly, but early stiffness and spasticity affect his mobility and cause frequent falls. Perry lives alone and values his independence.

By one year, he is using a walking frame. At four years, he begins receiving support from visiting carers, allowing him to continue living in his own home. For several years, his condition remains relatively stable.

Around seven years after diagnosis, his voice weakens and he begins using a communication aid. He also starts using a wheelchair. Perry dies peacefully at home several years later, having reached the average life expectancy for people with MND.

Summary

These three journeys highlight the diverse ways MND can unfold. While no two experiences are the same, timely, person-centred care can help ensure each journey is met with dignity, compassion, and support.