Hi, my name is Dave, I was diagnosed with Becker Muscular Dystrophy just over a year ago in July 2023 at 34 years old.
Me and my partner bought a first floor apartment in late 2021 in Glasgow, we decided to have the floorboards sanded before we moved anything in, so a guy came and mentioned he normally had someone helping him and would need to get a machine up the stairs, I said I’d give him a hand and made it halfway before feeling like I’d pulled every muscle in my body. I went to see a physio in early 2022 for the first time ever because of the back pain, she gave me a few things to work on for a few weeks, in this time I started a new job in a car garage and when I went back to the physio, the trapped nerve pain had now gone, but she noticed a few things with me walking up the stairs and with crouching and getting back up that concerned her, so she contacted my GP. After months of MRI scans and checks on my spine which came back with no sign of damage or cause, eventually I was sent to a Neurologist who immediately asked for me to do a blood test though at this point I didn’t know what for, I still thought the only three options now were: I’ve damaged something that will heal in time, I’ve damaged something that won’t ever heal or I will need surgery.
In July 2023 I had a phone call while at work to say, I have Becker muscular dystrophy, I just couldn’t believe it, I was told unfortunately there is no treatment and to avoid pretty much all the things I’ve been doing for 17 years in the motor industry. When I went back into work I googled ‘Becker muscular dystrophy’ and was terrified at what I had just been told but also so confused. After a few days of frantic googling my partner came across a Clinical Drug Trial currently underway for Becker muscular dystrophy, which was being run by an American company and we reached out, they explained that the trial was actually being held in the U.K. and this would be done in Newcastle, a month after my diagnosis, I was on the trial, 12 months later, we had sold our home and are now living in the Newcastle area to be closer for future research, and I’ve currently started the next phase of the trial.
The trial has been a huge positive for me as I was able to get so much more information and support from everyone involved so soon after the diagnosis, but I also felt a huge sense of duty to participate being one of a very small number of people with the condition that could even take part, maybe in some way also being told such a bombshell of news and that there’s nothing that can be done, I wanted to take control of the situation in some way. Early this year the John Walton Research Centre in Newcastle unveiled a new patient database, to allow those in the U.K. with Becker muscular dystrophy to take part and know about research and potential treatments taking place, called the BMD HUB, after it was announced I was asked to be the patient representative on its steering committee panel which has been a huge honour for me.
I grew up in Germany until I was 12 then moved to West Yorkshire in England in 1999, I did struggle in high school with Physical Education but I was still very active outside of school, I raised the issues a few times but nothing was ever noticed or taken further, I was always told I’m just growing or I’m not eating enough of something, I think growing up in the Army made me just blame myself or think I wasn’t trying hard enough, but once I found music and the guitar I felt I found the thing I could work on and was actually getting good at, so that really motivated me throughout my teens and then my working career.
I decided to leave my job in the motor industry a few months after my diagnosis as it just wasn’t safe or compatible anymore with the condition. Thankfully over the years of working in the motor industry I have had a side career in music, writing and recording music for film and tv, touring with a band and as a solo artist and writing and recording my own music for over 8 years now with a good amount of success, firstly as Charley Hicks and now under the name David & the Devil. I decided to finally go full time into music and use my platform to raise awareness of Muscular Dystrophy, and to talk openly about life with a muscle wasting condition as a musician, which in doing so has brought so many new and amazing people into my life. I recently released an album titled ‘Muscular Dystrophy Blues’ which entered the iTunes blues chart at Number 1 and US chart at number 2, so it’s been an incredible journey so far since that phone call back in 2023.
The album features a poem called ‘The Light’ written and read by my friend (Joe Logue aka @DystrophyDad) who I met on social media within the first week of my diagnosis who also lives with Becker muscular dystrophy and has written about life with the condition for many years now, it also turned out that he lived just 20 minutes away. I’m so thankful for his support and source of information in those early days. Once we met, we found that the condition wasn’t all we had in common, and finding someone who was also creative living with the condition gave me so much inspiration, I’m so proud to have his beautiful poem on the record and I can’t wait to work on more together.
My music is a mix of all the things I grew up with and love from 1920’s Mississippi Delta Blues to Heavy Metal, Rock, Folk, Country and so many more obscure genres that inspire me like Japanese Citypop, Synthwave and Chill Lofi Jazz, my music is usually very dark though and references swamps, the devil, death, monsters and occasionally, frogs. I am known for playing guitars made from steel called Resonator’s and using a slide on my finger which gives the guitar a unique and almost vocal sound.
It’s been a while since I played live with moving around the country and the seemingly sudden decline in physical ability and fatigue recently, but I want to get back out there and start doing it again with a new sense of raising awareness, inspiring others and continue enjoying playing and recording music for as long as possible.
I’ve learnt a lot about myself within the year and I know the condition varies so much individually, but my advice and strategy for myself so far is to be open and honest with everyone around me, confront the fears head on, be proactive, keep positive and keep fighting, with the right mindset I’m slowly realising that I can still do anything I want to do and I won’t let the diagnosis stop me.
I will be speaking about living with Becker muscular dystrophy at a Virtual Information Seminar on BMD hosted by MDUK on the 18th of October.
Thank you so much Treat-NMD for letting me tell my story so far,
David Hick (AKA David & the Devil)
