Dublin-based Margaret Mullarney, who has Parkinson's disease, will be facilitating workshops and bringing her choir to the third World Parkinson's Congress in Montreal which starts today.
Mullarney, diagnosed with Parkinson’s disease in 2004 at the age of 47, is the founder of an Irish charity, Move4Parkinsons, which aims to educate and empower people with the condition to achieve a good quality of life.
Parkinson's disease, which affects more than 8,000 people in Ireland, is caused by a loss of brain cells that produce dopamine, a chemical messenger.
World congress
Mullarney, a social entrepreneur, is one of 4,000 people attending the congress, organised by the World's Parkinson's Coalition. The delegates are made up of physicians, scientists, health professionals, caregivers and people with Parkinson's disease. They will hear about the latest research into the condition.
For Mullarney, who completed the Dublin City Marathon in 2011, living with Parkinson’s is not a soul-destroying life sentence. This former solicitor believes in taking control of the illness in a multi-disciplinary way that includes exercise, choral singing and nutrition as well as medication.
“What I hope to get out of the conference is up-to-date information around the management of symptoms and advice on how to achieve a better quality of life,” says Mullarney.
This pro-active woman admits that when she was first diagnosed, she thought her life was over and went through a period of “self-pity and despair”. But now, she is keen to impart her knowledge of how to live well with Parkinson’s.
"People would like to think we're getting closer to a cure. I don't know if we are but there is certainly a lot of work going on around Parkinson's. It's now much more in the public eye. I really believe that in the past, the disease wasn't seen. Because our symptoms are so unpredictable, people with Parkinson's tended to stay at home and be forgotten about.
'Old person's disease'
"When I was diagnosed, I thought Parkinson's was an old person's disease and that everyone who had it suffered from a tremor. I wasn't old when I was diagnosed and I don't have a tremor. Only 50 per cent of people with the condition have a tremor.
"What I suffer from is 'freezing gait' where one minute you're moving and the next minute, you're frozen and can't move at all. It's very challenging. I spend an hour every morning lying in bed, hoping that the medication will work. I'm doing very well in the circumstances."
Wellbeing
Mullarney attributes her sense of relative wellbeing to yoga, breathing mindfully and choral singing. Her charity's choir, 'Voices of Hope', will perform at the convention in Montreal's Palais des Congres.
"The purpose of the choir is to bring people with Parkinson's back into the world. It also helps our voices through singing. Our musical director, Jennifer Grundulis, who is a speech therapist, is going to do a musical piece at the congress.
“The reason we started the choir is because with Parkinson’s, your voice can go. The choir is there to give us our voices back. Singing in it is an amazing experience. It’s also good for our emotional wellbeing.”
Mullarney will present a session with New York-based neurologist Steven Frucht, who is also a musician. "I'll be talking about how I use music for breathing mindfully. Using mindfulness for singing helps people with rhythm and can also help people with their mobility. When you sing in a choir, you stand up so that helps with balance and mobility."
Chairwoman of Move4Parkinsons, Dr Emma Stokes, a physiotherapist attached to Trinity College, says the search for a cure for Parkinson's "is a journey. The greater our understanding of the condition, the closer we are to very good management of it."
move4parkinsons.com
