A FORMER speech and language therapist whose husband’s devastating diagnosis of Motor Neurone Disease has changed their lives forever is taking part in a concert which she hopes will raise awareness of the disease.
Joy Gidlow was one of the first singers to join the Hot House Music choir that was set up by musician Jon Eno for parents and friends of those who were having lessons with the national music school locally.
Later this month, they will perform a fundraising concert at St Peter’s Church, Swepstone, near Ashby.
The following day the choir will record their own version of ‘You Raise Me Up’ at Derby Grammar School as a charity single. Proceeds from the sale will go to My Name’5 Doddie; a charity set up to fund research into the disease 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.
“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.”
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.
“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 scrum-half 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 fundraising event for them that raised over £7,500.
“Hopefully this event can raise awareness of this terrible disease.”
Jon Eno is the founder of Hot House Music. Founded in Derby in 2002, Hot House Music alumni have gone on to work with chart-topper Lewis Capaldi and the 1975, while other former pupils include heart surgeon and scientist who worked on the Oxford coronavirus vaccination.
Jon 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.
He said: “I have known Joy and George for several years and so have seen first-hand the devastating affects of MND on the family. Our choir is like a family and we all have music in common, so what better way to raise awareness of MND and, hopefully, lots of money for charity, than performing and recording a charity single.”
The concert takes place at St Peter’s Church, Swepstone on Saturday, March 25th https://fb.watch/j5z5FtCd7-/ You will be able to download the single from Spotify.
ENDS
For further information please contact Kerry Ganly on 07734 723951 or email kerry@penguinpr.co.uk
