Since Cristian and I began this fundraising project, we’ve been astounded at the positive attitudes and happiness of everyone we’ve met.
I wasn’t really expecting another such uplifting experience from our meeting with ex-amateur boxer Richard Jones because of his gruelling history with motor neurone disease: He developed a genetic variant of the illness 3 years after his twin brother died from MND.
As if that wasn’t enough his wife, after watching her brother-in-law wasting away to death, couldn’t bear to watch her husband do the same. She decided to leave Richard and he was left to fight his own corner. His consultant told him he had between 3 and 5 years to live.
Jump ahead 11 years and Richard is still very much alive!
“When I got to 5 years, I thought that was it. I was waiting for something to happen but nothing did – laughs – I celebrated with a few pints!”
Although he uses an electric wheelchair to get around, has lost some of his speech and lives in a supported housing complex, he comes across as a happy man and is very philosophical about MND.
We were invited into the shared lounge in the building where he lives and while Cristian set up his Hasselblad I interviewed Richard. He was obviously a man with some inner steel, but I sensed kindness in his eyes, and real happiness. It’s a character combination that keeps recurring – every time we meet someone affected by MND.
“I used to do martial arts, my dad was a champion boxer in the army, my dad and my uncle were boxing champions in Worcester. I played rugby, cricket and cycled.”
When he was told that his twin brother had motor neurone disease 17 years ago, he had to go to the doctors to ask what it was. No one around him knew anything about it and he collected leaflets to help educate his friends and his brother. The more he found out, the more he thought “that can’t happen to Andy, my brother”.
Richard and his ex-wife nursed Andy through the illness –
“I used to feed him, bath him, wash him, take him to the toilet – all of which I loved. He was the funniest person you could meet. I was the one that could look after myself. Andy was funny.”
Cruelly, MND developed in Richard 3 years after Andy’s death. The first symptom he noticed was difficulty walking during his job at Worcester Porcelain. As Richard talked to me he kept chuckling as he remembered that he was still alive and the doctors gloomy prognosis had been wrong. His advice to anyone who is diagnosed with motor neurone disease?
“Enjoy life as much as you can, and if you’ve got a twin like I did, stay close because your twin will always stand by you. Live life to the full!”
If you’d like to help people with MND like Richard, you can donate to the MND Association – the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
Donate via your mobile phone! – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070