Parkinson’s is more complicated the older you get, and
that’s what the album’s about – all the symptoms, all the feelings you get and
the strange ways that people start to treat you. If you have Parkinson’s,
you’ll recognise it straight away – it’s all to do with how we feel and not
necessarily how we look. The message for those with Parkinson’s is ‘you’re not
The condition came along when I was about 54. It started
off in the shower – I was trying to rub my back and realised my left arm
wasn’t working very well. I went to the piano and I thought, “actually, it’s
falling behind the right hand”. My doctor referred me to a neurologist in
Nottingham, who said: “Have you ever heard of Parkinson’s disease?” It wasn’t a
very nice moment.
Parkinson’s can take you to dark places in your head. It’s
not the shaking and it’s not the stumbling or falling – it’s the phases of
nightmares and sleeplessness. That’s where I was at the time I started to write
my album two years ago. Parkinson’s impacted my piano playing – so the only
thing left to me now is to write music.
It’s not all doom and gloom. There’s a lot of humour to be had – we get ourselves into some interesting situations! If you can find a reason to laugh, you’ve got to take it.
What’s your musical background?
I’m a retired music teacher, but a full-time musician.
I’ve worked with lots of young people over the years through choirs, classroom
teaching and practical music making. I wrote music for amateur and professional
theatre and used to direct and write music for Derby youth theatre. I was a
That’s where my MBE – an order of the British Empire award – came from. When I received the letter, I thought it was a joke actually because it was all typed out like on an old typewriter. Prince Charles gave me the award and it was very special.
Why did you choose to feature a range of different genres and styles?
It was a conscious decision to explore different styles. The fascinating thing about Parkinson’s is that all sorts of different talented people and all different types of character can get it. The different styles reflect these different people. There’s going to be something for everyone – there’s folk, modern rock and a bit of country – there’s even opera in there.
How has music been important to your experience of Parkinson’s?
Sometimes it’s almost miraculous. I’m working on a new album and I put it on the other day. To be honest, I couldn’t walk at the time. I literally had to crawl because I was so worried about falling over – one of these days I’m going to fall straight through the drum kit! I put this track on, and it motivated me so much that I was able to snap straight out of it. And by the end of the track, three minutes later, I was dancing. I could even dance on one leg.
What role do you think that music can play during the coronavirus crisis?
Music can shake up our emotions and also straightens them
out. I love dancing around the studio listening to a track that I have
just recorded. A Beethoven symphony or a Benjamin Britten opera, or the White
Album can all take me to a special place in my head that Parkinson’s can’t get
Take some time out to plan some making and listening time for music. It does not matter how skilled you are, what experience you have, what style, where in the world the music originates, whether you are making music or listening or dancing – or all of these simultaneously. Just do it. Music, however you engage with it, will help you through.
What would you like to achieve next?
I’d like to raise more money for Parkinson’s research. 50% of anything I make on the album is going to a charity for Parkinson’s and if there’s any profit, the rest is going to be invested in my next album. I’d like to take it to a professional studio and producer, because collaboration has always been the key to the best things I’ve done.
Do you have a message for people with Parkinson’s at the moment?
My hope for the Parkinson’s community is that the science and the determination of humanity to find a vaccine to stop the coronavirus, will continue to advance and find a cure for Parkinson’s and all other disease. It’s ambitious, as well as hopeful – but we can do anything if we all put our minds to it.
To find out more about Parkinson’s and creative therapies, please visit the EPDA website.
Need to Know
Tony Coffey from Guernsey, Channel Islands, was diagnosed with Parkinson’s in 2009. He retired as a music teacher aged 60 – a year after receiving an MBE for services to education in 2014. His album ‘Out My Head’, dedicated to the carers of people with Parkinson’s, features 18 tracks about his experience of the condition.
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Why is it harder to cross obstacles when you have Parkinson’s disease?
A team of researchers at São Paulo State University, Brazil, have offered insights on why people with Parkinson’s disease can find it more difficult to cross obstacles than those without the condition. As part of the study, 13 people with Parkinson’s disease and 11 controls stepped over an obstacle 15 times, and scientists measured the distance between the foot and the obstacles during the step. They found that step-length synergy – the ability of the musculoskeletal system to adapt movement when encountering an obstacle – was 53% lower in people with the condition. “There are patients in our exercise group who fall three or four times a week,” said Fabio Augusto Barbieri, one of the study authors. “It’s important to understand how these patients’ gait and locomotion adapt while crossing obstacles so that we can improve step-length synergy.”
This April, The World Parkinson Coalition is launching The Parkinson Tulip Project – a global collaborative photography campaign to raise awareness of the world’s fastest growing neurological disease. As part of the campaign, which is supported by Supernus Pharmaceuticals, members of the Parkinson’s community are invited to share a photo of themselves with tulips – the official symbol of Parkinson’s disease. The project will run until April 2022, and all images shared by the community will be displayed at the sixth World Parkinson Congress in Barcelona, Spain. Additionally, every photo submitted will be entered into The Parkinson Tulip Project raffle. The World Parkinson Coalition hopes that the project will “give a face and name to those impacted by Parkinson’s” and “inspire the community, reminding people touched by Parkinson’s disease that they are not alone”.
Looking after dental health with Parkinson’s disease
Parkinson’s disease symptoms and medications can cause dental health problems – including difficulty cleaning teeth and increased tooth decay. Now, a study from researchers in Brazil has offered dental care recommendations to help people living with the condition. Analysing data from 14 studies, the scientists highlighted people with Parkinson’s can have “reduced quality of oral health and hygiene”. Their advice included routine teeth-brushing, as well as regular trips to a dentist. They also suggested brushing teeth with both hands, as symptoms like tremor and rigidity could mean using one hand is more difficult. The researchers wrote: “Although oral diseases are largely preventable, they are among the most prevalent diseases globally, thus creating a public health problem. “Despite the relatively low level of evidence in studies on oral health among patients with Parkinson’s disease, the data retrieved for this systematic review allowed us to create a set of simple guidelines.”