Joining a support group was one of the best things I did early on! Meeting other people with Parkinson’s and learning about their own journeys has been invaluable for me. It was there that I met and befriended the hard-working Elaine, along with many other wonderful members of the support group.
As time went by and I settled in to coping with my new reality, I gradually became aware of many people from the Parkies community – some with Parkinson’s, some not – who volunteered regularly into helping roles. Some, like Elaine, coordinated support groups. Some helped out with other Parkinson’s groups or causes, others did office work for organisations. And what was I doing? I was feeling guilty because I wasn’t putting myself forward into any of those roles!
In honesty, I didn’t want to do any of those things yet I knew I wanted to find a way to give back to the Parkies community that was giving me so much. And that’s when the idea of a Parkies choir occurred to me – something that I knew I could do well, something that would be a bit different! And, for the first time in my working life, I was willing to run a choir free-of-charge.
The sticking point? After running numerous choirs across many years for profit within a sizable private music teaching business, I was only too well aware of the behind-the-scenes work involved. I was prepared to handle the huge musical side of things on my own, but also tackling all the tedious and never-ending admin work free-of-charge? No way!! Besides, I knew how time-consuming the musical work would be – and that’s not even counting rehearsal time – and I just didn’t have time to also donate all that free office work. (Famous last words, indeed! Now that we’re incorporated and a much bigger deal than our initial small group, I wish I could still say that I only need to handle the musical side of things!)
Anyway, my fabulous idea for a choir ended up in the ‘too-hard basket’ and I went on feeling mildly guilty.
It was Parkinson’s disease that brought music back to my life. My husband, Chris, was diagnosed with PD 8 years ago. In my proactive way of dealing with and managing his condition, we joined a support group, networked and explored ways to help Chris. We signed up for the pilot study for Dance for Parkinson’s, and right from the beginning, the live music used in class just moved me. It was like opening the floodgates. Having experienced at first hand how music and singing can have such life-changing benefits, and not just for PWPs, I began to search for a singing group we could both join.
We carry a fantastic instrument within us all the time. As PD can affect patients with voice production, swallowing, etc, I was passionate about doing something to make exercising the vocal cords fun, challenging and ‘addictive’. There are intensive speech pathology programs available with exercises to help with voice production. However, many patients who have done the training are unable to sustain practice at home. Long, arduous and boring vocalisation exercises are required to sustain the benefits of the initial training. No wonder many people don’t continue in the long-term.
When Linda joined my support group, I was very excited and eager to test the waters about forming a Parkinson’s choir. By this time I had joined another community choir and really enjoyed what we were doing. I could clearly see how this could be an excellent activity for PWPs and their carers/supporters alike.
Time continued to tick by, Elaine didn’t get around to saying anything, I carried on feeling slightly guilty but said nothing to anyone as I didn’t think anyone would be prepared to volunteer for all that odious admin work…
Then one day, Elaine phoned me and asked me to join her for coffee. She said, “I have a proposition for you.” I suspected it had something to do with music but not for a moment did I think she’d also been scheming away about a Parkies choir!
Little did I know, Linda also had the same vision. So when we met over a cup of coffee, like a marriage made in heaven, the New Voice Choir was born!
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