How a trip to the World Parkinson’s Congress changed my life

How a trip to the World Parkinson’s Congress changed my life

In 2010 I attended the World Parkinson’s Congress in Glasgow looking for answers to how I could better manage my Parkinson’s.  Accompanied by my son, David, a physiotherapist, I had been sponsored by the Cure Parkinson’s Trust UK and was just one of two people with Parkinson’s I knew of who had travelled from Ireland.

This year I will return to the World Parkinson’s Congress in Montreal as the founder of a charity that is going form strength to strength, leading a group of 20 of our Irish members. I will also be one of the workshop facilitators at the conference and Move4Parkinson’s has been accepted to lead a workshop and to present in the poster session. In addition, the ‘Voices of Hope’ choir will perform during the congress. All of these developments I attribute to my experience in Glasgow.

Diagnosed with Parkinson’s Disease in 2004, aged just 47, I thought my life was over. At the time I was working as a solicitor and was a mother of two children who were still in school (aged 17 and 20). After a period of “self-pity and despair” I realised that I needed to take back control over my illness and to ensure I was managing it in the best way possible.

By the time the WPC 2010 came along, I had learned a huge amount about Parkinson’s through internet research and reaching out to others internationally who were on the same journey as me. Yet I was hungry for more information and practical support. At this point I had had to stop working as my illness was proving too difficult to manage within the confines of a traditional nine to five role. Unknown to me at that point, my journey to Glasgow would prove to be a turning point in both my well-being and working life.

It was at the Congress that I met John Ball, a person with Parkinson’s who since turning fifty completed twenty-five solo marathons, one ultra-marathon, and several team efforts. Inspired, I announced to my family on my return to Dublin that I was signing up for the Dublin marathon having never raced competitively before.  That spring I set up a small blog called ‘Move4Parkinson’s’ to share my training experience. In October 2011, a year after Glasgow, I completed the Dublin Marathon, with my children, Nikki and David by my side. I was awarded the Lord Mayor’s inaugural medal in recognition of overcoming a significant challenge to participate.

Following the marathon, in early 2012 I decided to launch ‘Move4Parkinson’s’ as a charity. The first major initiative was a Patient Empowerment Day for more than 200 participants. Speakers included representatives of the WPC, The Michael J Fox Foundation, The Cure Parkinson’s Trust and Professor Bas Bloem. The event included seated yoga, mindfulness sessions and even a singing workshop – it was totally unlike any Parkinson’s event which had been held in Ireland previously and set a marker for how Move4Parkinson’s would operate.

In September 2012, Move4Parkinson’s launched the ‘Voices of Hope’ choir, creating a community of support for People with Parkinson’s, their friends and family members. A place where positivity and hope were central to everything. Following a series of successful concerts, in April 2013 the choir launched its first single ‘Something Inside So Strong’, which made it into the Irish charts and has already achieved more than 8,000 hits on You Tube. This was accompanied by the launch of this website, intended to provide a valuable resource on self-management for people with Parkinson’s.

While this work has been on-going, I continue to pursue my goal of achieving the best possible quality of life with Parkinson’s and enabling others to do the same. Move4Parkinson’s has developed a simple framework called the ‘Five Elements’ which outlines how people with Parkinson’s can self-manage their illness.

For me, Move4Parkinson’s has been a family experience. I am so fortunate that my two children Nikki and Dave, who are 30 and 26 years of age respectively, both take such an interest and participate actively in the charity as volunteers. Their being involved brings hope to our family, that there is life for all of us after Parkinson’s. Families are often forgotten as the person with Parkinson’s gets all the attention. Parkinson’s has in some ways robbed them of some part of their Mum and in other ways given us a bond we may never have had.

About the Author:

Mags 4 Parkinson’s

Mags MullarneyFounder of Move4Parkinson’s, Mags was diagnosed with Parkinson’s in 2004 when she was 47 years old. Since then she has worked tirelessly to better understand Parkinson’s and to improve her quality of life through taking a multi-disciplinary approach and utilising complementary medicine in addition to the traditional. She spends much of her time speaking to groups and individuals about her journey so far and the ways that PWP’s can empower themselves to better manage their Parkinson’s.

8 thoughts on “How a trip to the World Parkinson’s Congress changed my life

  1. Marie Morris

    Thanks, to you, Mags, your family and all the people at M4P for helping me manage what might have been the most miserable period of my life. You have inspired not just myself but so many others in such a short time to educate and empower ourselves. With the support of M4P, there truly is a life after Parkinson’s. Enjoy Montreal…I look forward to the next chapter of your/our journey. xx

  2. Nylton Roberto Valadão Freitas

    Acho fantástico estas iniciativas, Sou portador de Parkinson, diagnosticado em 2004, pertenço a um Grupo de Ajuda Parkinson Niterói (Rio de Janeiro-Brasil). Gostaria de receber mais informações.l

  3. Nylton Roberto Valadão Freitas

    Acho uma iniciativa fantástica. Tenho Parkinson desde fevereiro de 2004. Faço parte de um Grupo de Ajuda Parkinson-GAP (Niterói-Rio de Janeiro Brasil) e gostaria de receber informações.

  4. Sinead Lyttle

    Wishing all that’s heading to Montreal tomorrow the very best of luck, have fun and want to hear you singing from here… dying to hear all about it when you are all back, you are all great people/friends as well as Superb singers, luv Sinead C…..xxx

  5. Christina Soriano

    hi Mags,
    This is Christina Soriano from NC in the US. We served on the creativity panel together at the WPC and I was honored to hold your hand in the photo. I screened the film before yours about the dance work I’m doing in my community for people with PD. Thank you for sharing the work you are doing with the choir in Ireland! So cool! Do keep me posted on your work. All best,
    Christina

  6. Patricia Olivier

    Inspired and energised after reading comments. So glad to know that there is so much activity in the world of Parkinsons. Bravo. Diagnosed with Parkinsons four years ago and just beginning to feel serious effects – greatest struggle with medication and getting it right.
    Best wishes
    Pat

    1. sarah

      Thank you Pat and apologies for the delay in responding to you. Keep an eye on our facebook page facebook.com/move4parkinsons for more updates. In particular we are launching a new animation on the theme of medication awareness this week

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