Family turns to music to highlight disease

by Kerry Ganly

A FARMING family are raising awareness of Motor Neurone Disease by using the power of music.

George Gidlow, of Springwood Farm in Staunton Harold, was diagnosed with the disease in July 2020. His wife, Joy, has been helping raising awareness of MND through performances by the Hot House Music choir, of which she is a member.

The choir gave a special fund-raising performance in Swepstone in March and then recorded their own version of “You Raise Me Up” at Derby Grammar School as a charity single Proceeds from the sale will go on to the MND.

Society and My Name’5 Doddie, a charity set up to fund raise by the family and friends of Scottish rugby player Doddie Weir.

“George’s diagnosis – in July 2020 – devastated our family,” said Joy, who lives in Staunton Harold with her husband of 36 years. “All of your hopes for the future are suddenly thrown out of the window because, for many families, deterioration is very rapid We are lucky, I guess, that three years in, George is still ‘doing OK’ and still managing to work on our family farm.

"It’s been a very frustrating few years, though”. Joy and George were on holiday in 2019 when a rippling down George’s right arm raised alarm bells

“George has, over the years, had problems with his back and we thought that it may be connected,” said Joy, a former paediatric speech and language specialist. “When we returned from holiday, George went for various scans and nerve conduction tests and, in the January, we saw a consultant who talked to us about diseases that damage parts of the nervous system.

Joy says that it took a while for her – as well as daughters Bethan and Carys – to be able to share news of George’s diagnosis with wider family members.

“At this point, George wasn’t diagnosed with Motor Neurone Disease – that didn’t happen until the July – but before I was a paediatric SLT, I worked with adults diagnosed with degenerative diseases, and I remember being about 22 or 23 years old and treating a patient with MND He was in his early 40s and his rapid deterioration has stayed with me forever ”

“We were in the middle of Covid, I’d just lost an uncle to Covid and George’s mum was ill,” recalls Joy. “We all needed time to process the diagnosis and we were also trying to plan for a July 4 wedding for Bethan, which couldn’t happen due to Covid”.

Joy says that within days of the diagnosis, though, George was appointed his own dedicated team of specialists at Nottingham’s Queens Medical Centre who “have been incredibly supportive ” He was also asked to take part in a medical study into Motor Neurone Disease led by Professor Dame Pamela Shaw at the University of Sheffield.

“For a year George had to keep a food diary and regularly have his urine tested,” said Joy, “so that doctors could look to see if there is a link between the metabolic rate in the body and deterioration for people with MND.

“Very little is known about MND and there has been little notable research into the disease here in the UK over the last 40 years Patients are prescribed Riluzole, a drug that has been used for several years, to slow down the disease There was a recent study that suggested a nasal spray may make a difference, but that study is still in the early stages

“There are lots of patients in the USA who are on different drugs that have had varying degrees of success, but their licensing laws are very different to over here. “That is why it is important to raise awareness of MND by taking part in the concert with Hot House Music, so that more research can be done”.

The death of Scottish rugby player Doddie Weir and diagnosis of former Leeds-Rhino scrumhalf Rob Burrows has meant that MND has been in the spotlight more in recent years.

And the charity set up in memory of Doddie Weir – My Name’5 Doddie – will benefit from sales of the charity single recorded by Joy and the rest of the Hot House Music choir “Like Doddie, we’re from a farming family,” said Joy. “We all love rugby and it is just a great, small charity that is making a huge difference We’ve already held a fund-raising event for them that raised over £7,500.

“Hopefully this event can raise awareness of this terrible disease”.

Jon Eno, founder of Hot House Music, taught Joy and George’s children Bethan and Carys to play the clarinet, trumpet and piano and felt that recording a charity single would be a good way to show support for the family, and others whose lives have been affected by MND.

The single will be available to download from Spotify.