Ahead of the launch of the Kilkenny Move4Parkinson’s choir for People with Parkinson’s, their family and friends, we asked Kilkenny resident and person with Parkinson’s, Marie Morris to share her thoughts on this exciting expansion. Here’s what she had to say…
Living close to our grandchildren in the beautiful medieval city of Kilkenny has given us a quality of life far exceeding our expectations when we retired here 8 years ago. However, there is one aspect of life which does bug me and that’s been trying to locate other people like myself with a diagnosis of Parkinson’s. I might be forgiven for thinking I’m the only one around these parts. If statistics are to be believed, they can’t be all living in Dublin, Cork and Galway…. there must be others with Parkinson’s in Kilkenny who like myself have loving support of family but presumably little or no contact with others on the same journey. I see my very agreeable consultant neurologist twice a year and my equally agreeable GP on average 4/5 times a year but with patient confidentiality issues, the absence of a Parkinson’s support group or designated Parkinson’s nurse (the nearest would be Waterford some 40 miles away ), I do feel very isolated at times.
Over the past five years I’ve scoured all the most likely places one would look for clues but have found only three others with Parkinson’s living in County Kilkenny. That information came using the internet. Although living miles apart, we keep regular contact via email and phone and with the help of family manage 3/4 very enjoyable get-togethers each year. It’s usually left to me to organise these meetings (probably because I’m the bossy one) but their friendship and support is so important to me, it’s worth the effort involved. Anyone with Parkinson’s knows that only someone who lives with the condition really understands how you feel about what’s happening to you. Online support from reputable Parkinson’s websites like Move4parkinsons.com has been a lifeline for me. Founder, Mags is an amazing woman (herself diagnosed at the age of 47) and meeting her was a turning point as it was the first time I had ever met anyone with Parkinson’s.
At this point you may well be thinking….. hmmm ……interesting….but what’s all this got to do with ‘Dreaming’ or for that matter ‘Singing’?
Well, the dreaming is about something, I’m hoping will happen in Kilkenny and the singing is something I have always enjoyed doing and which since my diagnosis of Parkinson’s has even more significance for me.
As a child, I used to sing on my own, morning, noon and night simply because I enjoyed it and it made me happy. My siblings were less than impressed with my vocal efforts and gave me little encouragement. I knew I wasn’t very good at it, but the noises that came out of my mouth were for the most part pleasant and in tune…I think!! Back then I thought people who sang in choirs were either very posh or very holy and I was certainly neither… so it wasn’t until secondary school that my singing abilities were finally recognised and I was chosen to sing in the school choir, the year we won first prize at the International Eisteddford in Wales. My interest was only briefly rekindled as choir singing was definitely not one of my priorities struggling with adolescence and pressures of exams.
Nothing further of note was recorded on the singing front until the age of 22 when I was living in Holland. I came across an old photograph of myself the other day singing with a group of Dutch friends in the University of Utrecht Student Choir, looking a lot younger and slimmer than I do right now. I felt quite nostalgic. There is something about belonging to a choir, one makes such good friends and some people in that picture are still my friends today, nearly 50 years on. Any further interest in choirs was put on the back burner for the next forty years as I was busy raising a family and working full time. Interest was however, to be unexpectedly reignited at a Move4Parkinson’s Empowerment Day in June 2012. Singing in a choir was the last thing I expected at a conference on Parkinson’s Disease but that’s exactly what I and 400 others were invited to try during a day packed with information, optimism and hope. Out of that day grew the now famous choir called ‘The Voices of Hope’. If you haven’t seen them I don’t want to spoil the surprise other than to say, I had an invitation to sing with this unique group of people at the Feakle Health Conference last summer and was able to experience first-hand the magnetic effect and spontaneous affection they engender in their audiences. I loved every minute of it and my hope is that if anyone reading this blog knows of someone with Parkinson’s living in Kilkenny, they will spread the word and contact M4P.
Living in Kilkenny, there is no shortage of well-established choirs but I am looking for one with a difference…one for People with Parkinson’s, their families and friends, and any others with similar conditions who may be invited to join us. The benefits of singing in a group for people with Parkinson’s have been well researched (http://www.canterbury.ac.uk/Research/Centres/SDHR/Documents/SingingandpeoplewithParkinsons.pdf) and one only has to read a blog by Carol Grimes (www.iavmt.org/documents/carolgrimessingforjoy.pdf) to discover first-hand accounts of the benefits of belonging to such choirs for people like ourselves who can so easily slip into depression, apathy and isolation dwelling on things we can no longer do rather on those we can.
Winning the Arthur Guinness Award has set the wheels in motion and M4P are now actively exploring the possibility of establishing a similar choir in Kilkenny. I am keeping everything crossed and am confident that Mags and her team will leave no stone unturned. This may seem like a challenge in a rural area like Kilkenny but M4P believes passionately that it is possible to live well with Parkinson’s, that there is hope and that we absolutely can have joy and laughter in our lives.
So on that note….why shouldn’t we “Dare to Dream”‘ in Kilkenny. We too will be able to enjoy the fun and friendships so important for our continued well-being and it comes more or less guaranteed in a small community choir of the kind envisaged. A diagnosis of Parkinson’s may be for life but that need not exclude us from living well . So, ‘C’mon on all you Katz’….let’s find our voices and start our own choir in Kilkenny.
Now that is something worth singing about!
About the Author:
Marie MorrisDiagnosed with Parkinson’s in 2010 (Symptoms since 2005), Marie’s career is in Special Education.
Having Travelled extensively, Marie and husband Terence are now happily settled in Kilkenny to be near their grandchildren, two cats and one very spoiled dog.
While not part of their original plan for retirement, PD has placed its feet firmly under their table. Their decision to blog for M4P gives a glimpse into their world and the ways in which they are learning to deal with their uninvited guest.