Some years ago, our family doctor had three female patients diagnosed with Parkinson’s disease (PD) around the same time. She enquired of each of us if we were interested in meeting to be of support to each other.
We all agreed to meet. We shared our stories, and we started a friendship that would eventually become Good Vibrations. In 2013, our group was small, but as we continued to meet we became aware of other women with PD in our community and began inviting them to attend our casual, sporadic meetings.
When I was diagnosed with PD in June 2009, I was very aware of the overwhelming emotional strain this placed on me and my family. My early symptoms included lack of arm swing, rigidity, slowness of movement, and a slight tremor in my left hand. I continued to work for another year after diagnosis, and during that time, I formalized a plan to manage my PD symptoms. I gathered the latest research published on PD, read textbooks and searched on the internet for relevant information, and joined Parkinson Society British Columbia (PSBC). I also joined the local Parkinson’s support group and began attending their monthly meetings. I was determined to learn as much as I could about PD. In October 2013, I attended the World Parkinson Congress (WPC) in Montreal where the latest research available was being presented to over 3000 delegates from around the world. My knowledge increased exponentially, and I became inspired by the many people working so diligently to fight this disease. I was now aware that I could do much to help slow the progression of PD, and I challenged myself to spread my knowledge, along with my journey, to as many as I could reach.
While attending the WPC, I met Dr. Becky Farley from USA whose research findings I had read. She had developed specific exercises that seemed to slow the progression of PD. As a result, I attended her Parkinson Wellness Recovery gym for a one-on-one personal assessment culminating in exercises specifically designed to address my activities and lifestyle. These exercises and other forms of physical activity I have added, like boxing and yoga, I practice regularly. My commitment to this exercise regime has helped me maintain my strength, improve my flexibility, have better balance and more energy, and to keep a positive attitude. Also included in my repertoire is a weekly singing class. Singing and vocal exercises benefit me by keeping the vocal folds flexible resulting in a stronger voice; it also exercises the chest muscles and promotes deeper breathing as well as sharing the experience with other PD folks. It’s a lot of fun.
In 2014, several members of our Good Vibrations group gathered in a team to attended the annual SuperWalk (SW) in Kelowna to fundraise for PSBC. As part of my commitment to sharing my knowledge, fundraising was a good way to educate the general public as well as family and friends about PD and how, collectively, we could make a difference. The Kelowna SuperWalk had been in existence since 2010 and attendance was relatively small. Having volunteered at a support group meeting to be on the SuperWalk committee for 2015, SuperWalk began to take on a more formal structure. With an enlarged Committee of 9-10 members that met regularly and divided up tasks, more emphasis was placed on promotion throughout our community resulting in greater awareness of PD and the services available in our area. Through the collective efforts of our dedicated committee members, we have been able to increase awareness in our local communities about Parkinson’s and the effect it has on individuals and their families.
By 2015, our Good Vibrations Team had grown to approximately 12–18 members who were meeting regularly. This continues today, and we have 10-14 members able to attend our monthly meetings. Our friendships that have developed over the years are strong, and we give as well as receive a lot of support from one another. We share our PD journeys with the group and discuss our successes and failures with our treatment regimens; we give and receive hugs, share laughter and tears, and try not to take ourselves too seriously. As each PD journey is unique and specific to each member, so too are the contributions to SuperWalk. All members contribute as they can, some joining us for the Walk, others in a virtual way. In 2017 and 2018, our GV Team was fortunate to be awarded the top team for fundraising across BC. I am so proud of the collective efforts of all GV Team members. Each year with this reward came a gift certificate for $300 from IGA. At our Christmas meeting, we discussed giving this money back to a charity within our community, solicited ideas, and selected one. Since we had gained so much from each other in our own group, we looked for charities that focussed on women and children, and the homeless population. In 2017, we donated our gift back to Inn From the Cold (a homeless shelter) and in 2018, we donated the money to Mamas for Mamas (an organization supporting single moms).
As SuperWalk continues to grow in Kelowna, we have been able to increase our fundraising efforts and in 2019 the Kelowna contribution to PSBC was approximately $80,000. Our GV Team is motivated to raise money for PSBC as many of us have benefited from the programs and services they offer e.g. exercise videos, caregiving workshops, regional meetings, swallowing workshops, counselling services, pamphlets and newsletters to name a few.
Participating in SuperWalk is very rewarding; it’s a family event with all members — including pets — participating. There is a camaraderie within the crowd that we are all there for one purpose: to make the lives of those affected by Parkinson’s better and improve their quality of life. I am very proud of how our community has responded to our outreach for support. In addition to the programs and services available across the province from PSBC, advocacy is a key role of the Society. I have been involved at the local level, working with policymakers to raise awareness of PD and stress the urgency of their involvement wherever possible. Currently, more resources are needed from allied health professionals like speech pathologists, physiotherapists, occupational therapists, and dietitians to help patients manage their PD optimally.
Now in my 11th year since diagnosis, I continue to enjoy my life to the fullest. Each year, I set goals and a plan to achieve them. Physically, I find it a necessity to participate in as many varied exercise programs to maintain my physical health. Emotional health is achieved through my family and other social contacts. My grandchildren inspire me every day, and bring much joy to my life. I challenge my cognitive health by getting involved and spreading my knowledge. To this end, I have attended the WPC in Portland in 2016, and the latest WPC in Kyoto in 2019 to learn about the latest research in PD. And I continue to raise awareness in my community of what we can do to improve the quality of life for people affected by PD, and the efforts of PSBC on our behalf.
Fundraising is a lot of work, but the reward is BIG. Start small… every contribution is appreciated. I encourage all of you to participate where you can to make a difference — and get involved!
Submitted by Carole Taylor.