Widowed to Motor Neurone Disease: Rachel’s story

June 2024

Following the sad news of rugby star Rob Burrow’s death from Motor Neurone Disease (MND), WAY member Rachel speaks about her experience of being widowed to MND – and shares some advice for Rob’s widow…

"My husband was diagnosed with Motor Neurone Disease (MND) in November 2020, at the age of 46. He lost his ability to walk and stand, then his ability to speak. In March 2021, he had a tube fitted to administer all medication and then food. By August of that year, he had completely lost his ability to swallow. At this point, his arms and hands had also started to fail. Within a few months, all he could do was blink his eyes. 

Watching my big, strong 6’2” husband slowly physically destroyed by this disease is one of the most traumatic things I have been through. He died in April 2022. After such bravery and graceful acceptance of this, it was a relief not to witness his suffering any more. 

I am pretty sure that Rob’s widow Lindsey will be feeling all these things. Relief and desperate sadness rolled together. There are so many of us who get it, unfortunately. 

Caring for someone with MND is very different to other illnesses, but the grief is the same. The peer-to-peer support network WAY Widowed and Young has been a lifeline for me. There aren’t many of us who lost our partners to MND within WAY, but there are plenty of people who understand loss of this magnitude. All I can say is that, over time, it does get easier to carry. You slowly learn to live alongside your grief.

My heart goes out to Rob’s widow Lindsey and what I would like to say to her is: Please reach out to those who get it. Being able to talk to others in the same position is so very important. "

WAY members offer each other support, friendship and understanding after being widowed at a young age.

Find out more about our peer support network