IN MY COUNTRY Author: Natalie Muschamp Published: 2 January 2019
Natalie Muschamp is the founder of Step up for Parkinson’s, a Maltese organisation that provides free dance therapy classes for people with Parkinson’s and their carers.
In the latest in our ‘In my country’ series, she tells us how, having found her “calling”, she tackles the stigma around Parkinson’s – and why her classes will always be free of charge
My aunt’s partner had been suffering from Parkinson’s for years and eventually passed away. I was young at the time, so I didn’t really know what was happening, but seeing my aunt in such distress was frightening. I came to understand the caregivers’ side of Parkinson’s – and the impact it can have on you as a person.
I went back to school in Malta as a mature student and decided I wanted to use dance to help people living with Parkinson’s. One of my tutors sent me a link to Dance for Parkinson’s in New York, US, and that was it – I’d found my calling. From then on, I dedicated everything to Parkinson’s. I trained in New York and did another course with Dance for Parkinson’s and the English National Ballet in the UK.
Tackling stigma
Step up for Parkinson’s was born in 2017, after I managed to get funding from Maltese charities the Malta Community Chest Fund and later, the Social Impact Awards. When we started – with 15 participants – there was only one other Parkinson’s support group in the whole of the country.
Early on we faced a lot of challenges. There was very little known about Parkinson’s and the stigma around the condition was huge. It was also impossible to get men to come to dance classes, so I had to brand it as ‘creative movement therapy’. When we started, participants wouldn’t let me take photos because they didn’t want people to know they had Parkinson’s.
There isn’t just stigma around Parkinson’s in Malta but around disability in general. It’s not like we have disability friendly buildings everywhere – breaking down those stigmas is hard.
Now, two years later, we have 152 members in six locations, 11 trainers, and ambassadors for the organisation appearing on TV and radio. People are becoming more open about having Parkinson’s. Because we’ve grown so fast, it’s vital we get more funding to pay our trainers. We provide a free service, but we pay our trainers because they are all either dancers or practitioners.
It’s a constant struggle trying to achieve financial sustainability. We’re not selling anything, we’re not making any capital – but that’s the choice I made. I refuse to charge people and the beauty of the classes being free is that we have people from all backgrounds taking part. By making the classes free, we are integrating the whole community.
The arts as therapy
I want people in the international Parkinson’s community to take the arts as a therapy more seriously. It’s been proven to help. People with Parkinson’s often lose their expressions – in their faces and sometimes in their voices – so these classes are an opportunity to regain that expression and creativity, as well as to practice breathing and mindfulness techniques.
It’s worth remembering that you don’t get Parkinson’s alone. If the person with Parkinson’s feels better – their caregivers or family members feel better. It gives what we do double the purpose. I think we need to tap into the arts to treat mental illnesses too – and most importantly, I think they should always be free.
I knew Step up for Parkinson’s was doing well when the head of the neurology department at the Mater Dei Hospital, Malta, endorsed us, and my participants’ doctors told them they didn’t need to double their dose – they ‘just needed to keep dancing with Natalie’. That is a success.
Eventually, our aims for the organisation are to become a part of the national health system in Malta, to extend our therapies to other conditions like rheumatism and MS and continue to raise awareness around Parkinson’s.
For more information on dance movement therapy and Parkinson’s please visit the EPDA website: https://epda.eu.com
https://parkinsonslife.eu/step-up-for-parkinsons-malta/?fbclid=IwAR3PPNoOsfLcn5Pn4hk2fqofrkpMt6KpwdS9E7gV2IIcA8C01aTmKMtXVqk
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