Paul’s Motor Neurone Disease story: “The spirit of community at The Brain Charity makes me feel better about life”
Paul, who is originally from Kenya, moved to the UK in 2012 to pursue a circus career as a contortionist.
But he was forced to give up the physically demanding job after he was diagnosed with motor neurone disease (MND).
MND is a degenerative terminal condition which affects the brain and nerves and causes muscle weakness. There is no cure and it gets worse over time, shortening life expectancy.
Paul’s MND affects the right side of his body, causing weakness in his right eye and joints and muscle wastage in his right hand and meaning he needs leg braces to help him walk.
The 49-year-old was supported by The Brain Charity’s carers advocacy team to apply for suitable welfare benefits and receive support for his household bills.
Staff at The Brain Charity also helped with housing and insurance processes when Paul’s partner’s home in Liverpool was destroyed in a fire five years ago.
Paul said: “When I came into The Brain Charity for the first time, I felt a warm feeling within myself.
“I love it here. Being in the centre made me feel better about life. It’s a peaceful place and the people create the spirit of community.
“During the COVID-19 lockdowns when I wasn’t able to come in, I missed it so much.”
Paul now volunteers in The Brain Food Café, serving food and drinks, showing guests to tables and cleaning surfaces.
He said: “During my childhood I lived on the street from the age of one.
“I had never received a birthday card in my life until The Brain Charity’s staff and volunteers sent me one.
“When I looked at all the names who had signed the card and wished me well I felt overwhelmed with emotion – I still have the card safe now.
“It was a feeling no one had ever given me before in my life and was so special. If I ever left the UK, that card would be one of the most important possessions I would take with me.”
Categories: Info & advice, Volunteering, Welfare benefits
Published: 1 November 2021