Parkinson’s disease: Stepping forth into exercise, stepping back into the world

When most of us stand up to give a speech, we fear that we might freeze on the spot, stuck for a word. For Mags Mullarney, who has Parkinson’s disease, the prospect is even more real; one of her symptoms is a sudden “frozen gait”, and she avoids it by walking while she speaks.

But it’s not just on stage that Mullarney has been keeping things moving: her social enterprise Move4Parkinson’s is helping people with the degenerative condition to understand how they can take a more active role in managing the condition and get involved with sociable activities that can keep their symptoms in check.

“We set it up to educate, empower and inspire people with Parkinson’s and their families to have a better quality of life – that’s the idea behind it,” says Mullarney. In 2004, she was diagnosed with Parkinson’s disease, a progressive neurological condition that affects the control of muscles in the body.

“After I was diagnosed, I couldn’t find any way to manage my entire self. So I spent many years researching it, making life better for myself.”

Mullarney decided to train for a marathon, and to blog about her experience. “I set up a website, not thinking anyone would read it, but people started to read it very quickly,” she recalls.

“I blogged about my journey [in the sense of] having a chronic illness and training to do a marathon: they were both long journeys, they were comparable.

“People started to ask me to come and talk to them and I found they got motivated by that. So I decided to share the knowledge that I had and not just hang on to it myself. We started from there, and it has been a huge rollercoaster.”

Singing, dancing and self-management

Move4Parkinson’s is based on the “five elements” framework of medication awareness, exercise, nutrition, emotional wellbeing and optional treatments, says Mullarney, and its community programmes are helping people to improve their quality of life through social activities.

“People with Parkinson’s need to exercise on a daily basis and to repeat the exercises so you remember them,” she says. “So we organise set-dancing classes, which is about taking a step to do exercise but also taking a step back into the world.”

The organisation also runs the Voices of Hope choirs in Dublin, Kilkenny and Wicklow, where people with Parkinson’s can sing with friends and family to help keep their voices strong. They have launched a single, sung at concerts and amassed thousands of views on YouTube.

“It is not only about helping your physical voice, which goes with Parkinson’s, but also your voice in society, which goes if you become reclusive and you stay at home,” says Mullarney. “This gets you back out.”

Information sharing

As well as running programmes for set dancing, singing and even drumming for the community, Move4Parkinson’s is building links with the medical profession and with other Parkinson’s advocate organisations, because Mullarney believes sharing information, and collaborating, is key.

“There’s no point in reinventing the wheel, so if someone has information, let’s use it together,” she says.

“Since I was diagnosed, I have lived for about 96,000 hours with Parkinson’s disease, and my and other people with Parkinson’s being able to share our experience and take part in studies and work with the medical profession can help everyone.”

Mullarney is now growing the social enterprise, which means fundraising and looking at new ways to enable people with Parkinson’s, and she is particularly keen to reach people who have just had a diagnosis.

“When someone is starting on this journey of chronic illness of Parkinson’s disease, they hear that it is something incurable and degenerative and progressive. There’s nothing great about those words, and we see people go into a place of despair and shock and anger and denial,” she says.

“I don’t want people to have to experience that. We need to be able to address any of the emotional issues that are coming up naturally as a result of that huge grief and bereavement to be diagnosed with something like Parkinson’s.

“We want Move4Parkinson’s to offer a place to go for practical, emotional and self-management help.”

Mullarney is driven to keep going with the social enterprise, in part for herself and in part for others.

“I believe that there are answers out there,” she says. “And the big reward is always when you meet a person who says that your work has made a difference for them; that it was really helpful.”

[ socialentrepreneurs.ie ]