Writer/director Chiara Viale told David Hennessy about The New Music, a film about Parkinson’s, punk and friendship.
Described by CineEuropa as “Brave work…a little independent film with a big heart”, The New Music is a film about Parkinson’s, punk and friendship.
Chiara Viale’s feature film directorial debut centres on talented classical pianist Adrian, played by Cilléin McEvoy. When Adrian is diagnosed with Young Onset Parkinson’s Disease, his world falls apart. Afraid of the health implications and failing his family, Adrian runs away from home to Dublin city. Finding a room in a shared apartment he meets Will, David and Jodie who make up the punk band The Cellmates.
Parkinson’s disease is a long-term degenerative disorder of the central nervous system that mainly affects the motor system. The symptoms usually emerge slowly and, as the disease worsens, non-motor symptoms become more common. The most obvious early symptoms are tremor, rigidity, slowness of movement, and difficulty with walking.
Although he initially shies away from their invitations to gigs and and says nothing of his lifetime of musical training, the band discover Adrian has something to add. More importantly he finds he can take some of their carefree but defiant attitude to deal with his new reality.
The film was inspired by heartbreaking real life experience as writer/ director Chiara’s father died having suffered from Multiple System Atrophy, a rare degenerative neurological disorder with symptoms similar to Parkinson’s.
Chiara told The Irish World: “I lost my dad in 2013. As often happens to people, you can’t write about it straightaway. You don’t know exactly how to work it out.
“It was a bit of a surprise when the story came out and it turned out to be so close.
“The whole concept started with me wanting to talk about someone who loves music, plays music but somehow can’t do it anymore because of something external that happens to him.”
When Chiara found out about a form of Parkinson’s that affects young people, she knew that this could be right for her character due to it being such a rare but devastating diagnosis.
“That’s where everything clicked for me because MSA is rare and I just remember how difficult it was for my family and for my dad to go through a condition that nobody knew about. It seemed like nobody had it, nobody knew about it, the doctors didn’t even know.
“In Italy there was no information for him so he used to get the MSA Trust magazine shipped from the UK to read because that was the only publication where people were talking about MSA.
“That’s how much it impacted him, the fact that it was a rare condition rather than something everybody would know about and know how to approach. That was an important part of that process for us as a family so this is one of the reasons why I think now, in retrospect, everything clicked for me so much and I felt like that’s the story I want to tell.”
It took a long time for Chiara’s father to get a diagnosis as the early warning signs were too small to register as what it is.
“What happened with his condition in particular, but it is something in common with many other conditions, is that the first signs are so small that they come camouflaged as other things.
“In his case we didn’t know. Now me and my mum are trying to trace back when things started.
“My Dad would have been in his fifties by then, because MSA is more of an elderly condition, so he’s from a generation that doesn’t really talk about their health much so we didn’t know anything.
“He got a bit more closed up at the beginning because he was trying to understand what he was going through but he didn’t really want to give out clues. He got very proud. He wanted to keep going to work and all of those things even if he wasn’t feeling too well. And then things started to show.
“MSA affects the autonomous parts of the nervous system so all the things that your body does without you having to tell it: Your ability to write, your balance, blood pressure, breathing while you’re sleeping. All of these things start to slowly be affected and in his case it became something that was under people’s eyes when he started getting very low blood pressure problems. That was something that anybody would see. He would lose his balance and fall so eventually at the end he had to use a wheelchair.
“But something that I really wanted to do with The New Music was to show what happens at the beginning of everything and this is why Adrian’s symptoms are almost unnoticeable throughout the film. The main actor did a great job. It is more about what he is feeling and what he is going through, what he feels that he can’t show and it’s not enough for people to see.
“In the case of my Dad the first symptoms would have been these but a lot of them were emotional symptoms as well: Not wanting to reach out. Every time you asked how he was, he would always react, ‘Oh yeah, I’m good’. A lot of closing up.
“Then eventually when he was diagnosed, which happened about five years later from when everything started, and he could put a name behind everything he actually opened up a lot and he became an even kinder person than he was before. Within the grief and the difficulties, we became closer as a family after but that first part was very tough on us.”
Five years is a long time for Chiara’s family to watch her father battle an unknown illness and for him to not know what is wrong.
“That’s one of the hardest things about these conditions, because they feel like they’re something else. He was on medication for a bunch of different things. He did loads of different scans and tests for different symptoms but all the doctors would see the different bits and treat each bit by itself.
“It took a long time for someone to join the dots and say, ‘I think this is neurological’. When someone said, We think that’s what it is’. Then it opened up the route for a new understanding and of course then being told that it was Multiple System Atrophy was a big hit because there’s no cure. It’s like Parkinson’s, it’s just a steady decline. All of it is, ‘What do I make of my life? Now knowing that, how do I make the most of what I have and how do I still enjoy my life and the people I love?’
The film is supported by Young Parkinson’s Ireland and aims to dispel the stigma and shine a light on the rare condition. The eclectic soundtrack also includes David Sangster, a musician who has also been diagnosed with the condition and has been an active advocate for greater research and understanding.
“I spoke to people in Ireland with Parkinson’s and we’ve been in close communication throughout the whole process. I’ve heard lots of people’s stories and it takes years sometimes for people to go through that first big emotional dismay of saying, ‘How do I deal with this?’ There’s depression, there’s all sorts of problems coming with it. The biggest fear is, ‘I can’t make plans. I’m going to lose my job. My life is over’.
“I met people who got this in their 40s. They have young children. David Sangster, the pianist helping us in the soundtrack- He’s a father.
“In Adrian’s story, it takes about six months to deal with this because he has the help of his friends, the help of the band but sometimes it takes a lot longer for people. Or less, it depends on the person.
“There’s definitely that time between the diagnosis and finding a way. That’s what the film’s about.
“Adrian comes from a world of perfection. We all view classical music as this perfect kind of world. Everybody is dressed up, the music has no mistakes ever. For him to have started in that world and be told, ‘Nothing is going to be perfect anymore’. That’s the big thing.”
It is his flatmate Dave that gets through to Adrian when he says that punk music is not about perfection but quite the opposite, accepting that you and the world are not perfect.
“It’s also something I struggle with myself. I tend to be a perfectionist. These words resonate with me as well.
“It’s the love of the people around you and the friendship and the community that you have that is going to make the difference rather than doing everything perfect or trying to.”
When he is diagnosed, Adrian runs away from his family, his planned international concerts but can not run away from his illness.
“Being young and having a very loving mother who expects a lot and has invested so much in him, there’s also that sense of and fear of letting people down.
“His running away is, of course, running away from the illness but also running away from what that means in his personal life and what that means for his family. He doesn’t know how to tell his mother about it so he prefers to run away. He still doesn’t want to deal with it but it’s the band who help him deal with it to the point he’s able to save his relationship with his mother eventually which was very important for me as well. I felt that I really wanted Adrian’s mother to be part of his life all the way up to the end. She refuses this new world that he goes into at the beginning but by the end of the film she understands that there is positivity there. That was very important for me to show that sense of being together as a family.
“I was just very lucky to have the help and support of the Young Parkinson’s community in Ireland. We had loads of lovely conversations and loads of support and encouragement throughout this. It is a thing that affects the person and everybody around them.
“I just wanted to make a film that would speak both to the people with Parkinson’s but also to their families. That seems to have happened. I’ve had good feedback from families being able to experience this together. That means a lot to me.
“Everybody’s story is unique and very different when it comes to Parkinson’s or any of these difficult and terrible conditions to have, especially the ones where there is no cure. I think they are the ones that are the most difficult because it feel like they’re robbing you of your hope. You have to redefine so many things and what hope means for you personally and your family. It’s a big thing to go through.”
The film shows Adrian reach rock bottom. When Jo wonders what is wrong with him, he snaps that he can’t stop his hand shaking, he’s struggling to swallow and says, ‘I’m falling apart’.
“People talked about how difficult it became to eat in a restaurant or take off their jacket.
“One of the big things mentioned in the Parkinson’s community is that the tablets they get given, the blisters are extremely difficult to open so they are still wondering, ‘Why do we get our tablets in such little tablet containers that we have such a hard time opening?’
“Also, one of the other things- It’s getting better now- is the fact that it used to be that you had to handwrite forms to submit things and handwriting gets difficult. Even my Dad with MSA, his handwriting was one of the first things affected. So many things that for people that don’t have this condition seem to take for granted are actually something you have to think about.
“If you look at what people with Parkinson’s do, what sort of changes and adjustments they make to their lives, it’s absolutely incredible.
“There’s always that time of, ‘I don’t know what to do. I put my hands up. Everything is broken’. From then, everybody finds something, some hope somewhere and it’s more about giving it a new name. The same way Adrian is like, ‘It’s not that I can’t play anymore. I can play music. I can’t play that music that way but that doesn’t mean that my passion is finished’.
“There’s people who keep doing what they love despite everything. It’s something I’ve seen people doing.
“I’ve seen so much courage and it’s given me so much courage. I’ve said this before, the occasional day onset when things go bad I think back to all these people that I know and think, ‘If they do that every day, what excuses do I have?’ That really has given me loads of strength.”
Following in a proud tradition of musical dramas set in Dublin that includes The Commitments, Once and Sing Street, Chiara says she took inspiration from the ‘roughness’ of the story of Roddy Doyle’s soul band and even more from the story of Glen Hansard’s busker.
“Dublin is really a city of music. I’ve been living in Dublin for six years and apart from recent times you walk down the street, there’s always music. There’s always buskers so there’s that sense of the musicality and the music tradition in Ireland is huge. It feels like the city has a soundtrack.
“I definitely took a bit of inspiration from Once. When Once came out, I was in Italy but I had lived in Dublin for a year by then. I just watched it and felt so homesick I was like, ‘I have to go back’.
“The film’s about the love of music.”
Originally from Italy, Chiara has lived in Dublin for many years and it has been hard to be so far away from family during the pandemic with Italy also a place that has been devastated by the virus.
“I’m very lucky because I don’t live alone and I have enough people around me. And Ireland is such a fantastic place for community, kindness and support as well.
“Of course, I particularly missed my family. There might have been times where there might not have been the urge of going home so much but somehow since this has started all I want to do is go home and hug my mum but I can’t. I’m looking forward.
“It just reminds us of the meaning of certain things. It reminds us of the meaning of being home with our families. Maybe the last Christmas I wouldn’t have thought it was such a big deal not to go home but this year I felt I really wanted to and I couldn’t. I feel that I’ll take some things with me when things get better in terms of remembering how that felt and spend more time at home.”
The New Music is available on digital now.