MND takes and takes and takes
people are living with MND in the UK right now
people die each day from MND in the UK
of people die within a year of being diagnosed with MND
MND cruelly takes one thing after another
Motor neurone disease (MND) affects nerves in the brain and spinal cord that help tell your muscles what to do. That means it affects everyone differently – taking lives bit by bit, word by word, and breath by breath. It’s a disease that is sadly fatal and incurable. It takes everything. But we’re here to give people facing MND vital support and improved care – and bring us closer to finding a cure for MND.
Mike was always a very independent man, which of course meant having MND was tough – not just physically but emotionally too. While living with MND, Mike’s mobility worsened and he needed a wheelchair, and he lost the ability to speak.
However, Mike made it his mission to be heard. The Association gave him the chance to bank his voice so he could use an Eye-Gaze voice tool to communicate. We also loaned Mike technology to help make his life easier and provided grants for his wheelchair to keep him as independent as possible.
Just a few days after the launch of The Love Inside campaign, Mike sadly died of MND. Mike will be remembered for his incredible humour and for his commitment to improving communication opportunities for people with MND, in particular through his input to projects I Will Always Be Me, and Mind’s Eye.
Mike and Zoe’s story
Mike was diagnosed with MND just a few months after meeting Zoe, his partner, in 2020. It’s been a whirlwind romance and Mike and Zoe got married – determined to make the most of the time they have together.
“There are some dark days and it is difficult sometimes but in no small part Zoe has got me through some really difficult stuff.”
Even though Mike focuses on the things he can do, rather than what he can’t, his MND has progressed very quickly. He went from using a walking stick to a wheelchair within 12 months and also has trouble with his voice.
With his condition deteriorating, Zoe’s love and care is more vital for Mike than ever. We gave Zoe a grant to help her learn to drive, so she can get around easier to support Mike’s new needs. We’ve also been able to help Mike continue to communicate with grants going towards voice banking.
Louise started to notice some slurring in her speech in summer 2020 but put this down to the exhausting workload she had as a GP during the pandemic.
However, by Christmas of the following year she had completely lost her power of speech and had some swallowing issues. It became clear she had MND.
“It was extremely upsetting to know that somebody who’s so bright and intelligent is now being so limited by this disease.”
Having dealt with many MND patients herself as a GP, Louise was all too aware of the bleakness of her diagnosis. As her condition deteriorated, she became increasingly reliant on her partner Rob, who became her full-time carer.
Louise was able to bank her voice which allowed her to still have one-to-one conversations even when MND had taken her speech entirely. She was also one of the first people in the UK to test Mind’s Eye, a piece of technology that allows people to express themselves with AI-generated artwork.
Very sadly, Louise recently died in December 2023. She leaves an incredible legacy of helping more people have the very best end-of-life care through her career and charitable work.