An interview with Kate Gray from Move4Parkinson’s on June 29, 2023 by George Ackerman, Ph.D, J.D.
Biography
Kate has been involved in Move4Parkinsons since May 2015 following her dad’s diagnosis in 2012. Kate believes that the Move4Parkinson’s community and classes are some of the key elements to helping improve the quality of life for People with Parkinson’s and she has already seen this firsthand with her dad.
Kate is a Montessori Elementary teacher from Dublin, Ireland and she enjoys being able to bring the children from school and the Move4Parkinson’s class attendees together through various intergenerational events and concerts each year.
Please tell me a little about your background and what got you involved with awareness.
I live in Dublin, Ireland. My family’s Parkinson’s journey started in April 2012 when I called to my parent’s house one night for dinner and was stunned to hear that the GP thought Dad had Parkinson’s. Luckily, for us one of the parents in the class where I teach is a neurologist so within a week, he had the diagnosis confirmed.
Looking back on the first year or two we are all in denial, it was the elephant in the room that no one spoke about. I’d only ever know one person with Parkinson’s as a child and he was wheelchair bound and had lost the ability to communicate on top of that memory everything I researched gave me the same answer – Parkinson’s Disease is progressive, degenerative, and incurable.
It was May 2013 I was unable to sleep and as I lay in bed, I was flicking through the RTE player (Urush TV Station), and I came across a documentary entitled Living with Parkinson’s. My initial thought was that it would be the same as everything else and I watched something else, but something drew me back to the documentary that night. As I lay in bed at 3:00am with tears running down my eyes I thought my prayers might have been answered. These were not tears of sadness but for the first-time tears of joy that there might be something out there to support our family. The documentary was about the work of Move4Parkinson’s and the various activities they offered along with following the Voices of Hope Choir as they travelled to Montreal to the World Parkinson’s Congress.
We are a musical family so I thought that mentioning the choir might be a starting point. The next day, faced with new information, I told Mum and Dad about the Choir, but there was no real commitment. My next tac was to show Dad a clip which was the Voices of Hope Choir singing in The Mansion House, Dublin still nothing I was failing miserably but I didn’t give up. I then began to follow the charity’s Facebook and realized that the choir had an open evening the following Thursday night. I asked dad to go but was greeted with a firm No. Being the person that I am, I rang the office and asked if the three of us could attend the open rehearsal.
Thankfully, during that week dad agreed to give it a go. As we drove to the rehearsal that first night, my parents barely spoke, in hindsight I probably didn’t fully appreciate how they were feeling as they did not know what they would see they entered the room.
As we entered Mags Mullarney the founder approached us and asked us how we had heard about M4P. Her next question to Dad was, do you like to sing? and with that dad burst into tears. But what we felt in the room that first night was magical, there was such a sense of love, a sense of community and a sense togetherness which I had never experienced before, and little did I know where that journey would take us.
Over the last 10 years my family has walked hand in hand with other people on similar Parkinson’s journeys we’ve come together in times of joy and in times of sadness.
Watching this disease take hold of my dad has been really unbearable at times, being with him some days when he doesn’t know us or days when his body doesn’t want to move can be incredibly tough but being able to bring him to the safety of Move4Parkinson’s classes where people know what you’re going through and know the fight that you’re facing each day without judgement is a lifeline. I dread to think where not just our family would be without M4P but where all the people who avail themselves of support would be.
Can you tell me more about Move4Parkinson’s?
Move4Parkinson’s was established in November 2011 by Margaret Mullarney who was diagnosed with Parkinson’s in 2004. We have a vision of a world in which People with Parkinson’s (PwP’s) are empowered to achieve their best possible quality of life.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to provide a safe space and weekly classes where People with Parkinson’s and their families can come and feel a sense of belonging.
What type of goals do individuals with Parkinson’s have when working Move4Parkinson’s?
Everyone who comes through our doors has their own goals relevant to them.
What type of programs does Move4Parkinson’s offer?
We offer weekly research-based classes including Choirs, One to One Voice lessons online, Set Dancing classes, Creative Dance classes, Physio based Exercise classes, Mindfulness sessions and recently we have established Support Groups for People with Parkinson’s and Family Members.
What effect can Move4Parkinson’s have on an individual with Parkinson’s?
I think some of these quotes from our class attendees sum up the effect Move4Parkinson’s has not only for People with Parkinson’s but their families too.
‘’Following my partner’s diagnosis, I was afraid of losing the person that I had known all these years. Since he’s started going to the Ballaly Voices of Hope Choir and to the Dancing classes, I have never heard him say that he doesn’t want to go- it is so important for me to see that he enjoys it and that he is like himself.”
“Move4Parkinson’s peppers through my whole life… I feel I belong; I have a place in the world again.”
“Parkinson’s was like the elephant in the room when my dad was first diagnosed. Finding the support of Move4Parkinson’s has changed my whole family’s life but especially my dad’s. Move4Parkinson’s is a very special community, with very special people who very quickly become very good friends.”
“I was just so struck by the fact that we were standing together, with such dignity and joy singing together.”
“We have slotted the Move4Parkinson’s classes into our lives. There is a lightness of spirit about the whole thing.”
“I just knew I was going to be ok if I could be with people like this.”
“I can’t begin to explain how much the Voices of Hope Choir does for me; I just love going. I really enjoy every minute of it. There is a sense of community I did not have before and I find that it has given me focus, a purpose, I know there is something I can do to help other people with Parkinson’s. Most importantly I have special friends now, a whole new circle of friends with Parkinson’s, friends who totally understand what I am going through.”
What would you like to see as a future goal for Move4Parkinson’s?
My dream would be that Move4Parkinson’s could reach more People living with Parkinson’s in Ireland and that we could provide classes and support nationwide.
What events do you participate in?
We have an annual intergenerational Christmas Concert with children in the local Montessori School, we have an annual Céilí, we run workshops and Conferences.
Move4Parkinson’s receives no Government Funding, we have no full-time staff so the day to day activities are planned by a very small voluntary Board of Directors hence we rely on donations and on fundraising to support our ongoing work.
How does Move4Parkinson’s also assist the caregivers?
All our classes are open to family members and friends.
How can someone get in touch? What is your website?
Email info@move4parkinsons.com
Website: www.move4parkinsons.com
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Your Parkinson’s doesn’t define you, your courage and strength does.