Q: How did you become a part of PWP/ParkinGo and how long have you been attending class?
I was diagnosed with Parkinson’s on Nov.18, 2008, while living in Calgary. At that time my husband, Gil, and I spent our winters in Phoenix. The following March, while in Phoenix, I met a woman with Parkinson’s , at my fitness class, and she invited me to go to a Davis Phinney event in Tucson. I knew very little about Parkinson’s at this time because I had “buried my head in the sand” since my diagnosis. That day, at Davis Phinney Victory Summit, changed my life! Becky Farley was one of the speakers and she talked about her work with exercise and Parkinson's and how she had developed BIG movements and vigorous exercise specifically for the disease. Since then, I have been to 3 of Becky’s week long retreats for Parkinson’s in
Phoenix and to her gym in Tucson twice. I saw how important exercise was but also the importance of just
being with other “Parkies” and sharing. Exercise had always been a part of my life so I thought “this is the
disease for me!” But now, I realize it is not only exercise but “community” that is as important. In 2012, Gil and I moved to Victoria. I discovered on the internet that Jillian Carson had a group of Parkies meeting at Panorama Recreation Centre to exercise together, so I contacted her and joined the group. There was Chris, Brian, Diana, Jillian and me. I soon realized how knowledgeable Jillian was and how she was connected with people and organizations all over the world regarding Parkinson’s. We would go for coffee afterwards at the The Roost and she talked about her dream of a Centre and that we needed to get organized because there were lots of others with PD who were not being well served. She and Diana came up with the name ParkinGo, which we thought was so “cool” not realizing that it would eventually have to change because of confusion with airport parking. So that is where the name ParkinGo was formed! More joined our group so we moved to Greenglade Community Centre, from Panorama. Bill, another Parkie, who had lived in Tucson for awhile and had gone to Becky’s classes, lead us in the PWR! exercises that Becky had developed for Parkinson’s. When he left, Lori lead our classes. She volunteered all her time and went to Tucson, to Becky’s, to learn the “moves” as well. Soon Terry came on board and with his financial background got our name registered and a charitable number. A couple of years later, a second site at the Ukrainian church, closer to downtown, was opened and more instructors added. Now here we are, today, a not for profit with lots more classes, super instructors, a new home of our own and the community that Jillian dreamed about! We are lucky to be in Victoria!
Q: What does PWP mean to you?
PWP means community to me. It means support. It means caring. It means understanding. It means exercise. It means fun. It means friends. I feel blessed to be a part of this wonderful organization.
Q: Any words of advice for people who are newly diagnosed with Parkinson’s disease?
My advice to those newly diagnosed with PD is to tell people you have Parkinson’s. You never know where that will lead. If I hadn’t told the fitness instructor in Phoenix, that day, I never would have met the woman with Parkinson’s who took me to that Davis Phinney Victory Summit in Tucson.
Q: What is your favourite place to go walking in Victoria?
I love to pole walk. I put my music on to a great beat, grab my poles and am out the door. I find the music makes my movements so much easier and fluid. I live near Lochside trail so walk there and have discovered lots of other trails around my home. I also love to walk the Songhees Walkway, Mystic Vale at U of Vic and along the waterfront in Sidney. We are fortunate to have so many wonderful places to walk in this beautiful city.
In this issue of the PWP Newsletter we present to you Sukhi Rai!
Sukhi is one of the original members (class participant and past board member) of PWP all the way back to when it was ParkinGo! Sukhi has lived with Parkinson's disease for nine years, and has navigated the ever changing nature of the disease with grace. Read below for some tips and tricks which help him swim this sea.
1. How long have you been with Parkinson Wellness Project?
I started attending classes in Victoria for almost 3 years.
2. What are your challenges with change?
It is now almost 9 years since my diagnosis and as is the case with many people living with PD I have faced many changes as the disease has progressed. I find the major challenge with change comes with the mental struggle; the grieving over having to leave my occupation, the sadness in giving up my driver’s licence, and accepting the changes in the body as PD progresses
3. What helps keep you grounded during times of change?
My spiritual community and the support of my wife, children and extended family. Their faith in me means the world to me. Also, I am inspired by others living with PD who I have met in PD support groups or at PD exercise classes. It's comforting that you are not alone in your PD journey.
4. Do you have any advice for people first diagnosed as they overcome the changes ahead?
My advice for those newly-diagnosed is for them to resist the temptation to withdraw and instead stay connected with your community. This means reaching out to organizations such as PWP, Headway and Parkinson’s BC. All three organizations ensure you are not alone in your PD journey. Personally, I gained great benefits in belonging to a PD support group and being part of the PD exercise classes run by PWP. The exercise classes are as beneficial for your mental health as they are for your physical well-being.
5.What does the Parkinson Wellness Project mean to you?
PWP means the world to me as it provides a safe and enjoyable environment to strive to be the best you can be for that day. I am grateful in being part of the positive energy established by our great instructors and the other participants of the classes
Q: How did you meet?
Carlea and Jim: Jim and I met 19 years ago on a blind date, set up by mutual friends. When we met, we knew it was meant to be as we both had the same goals and outlook on what we wanted in life and we were married a year later. Jim worked as a Transit driver for 31 years and I worked for the Provincial government for 36 years. Once retired, Jim bought himself a muscle car to restore and fix up, a dream that he has wanted to accomplish since he was young. After I retired, I was able to spend more time sewing for myself as well as volunteering my sewing services for the seniors in various care homes. We love spending time with 2 granddaughters, ages 4 and 2, they are such a treasure in our lives. We spend most summers up at Honeymoon Bay, just outside Cowichan Bay, where we have a trailer and enjoy getting together with our lake friends for golfing and happy hours.
Q: How do you practice love for each other?
Carlea and Jim: Jim and I both grew up with parents who instilled good morals and values, such as respecting others and treating people the way you want to be treated. One value, was never take each other for granted, just by saying “thank you” to each other even if its something we do for each other on a daily basis. Being there for each other is important to us whether attending appointments or an exercise class, and holding hands whenever we are out and about, it gives us that tender feeling of love. Both of us value the type of love and respect our parents had and we try to emulate what they had and they both had 50 years and up together!.
Q: Why is LOVE and Parkinson's disease important?
Carlea and Jim: When Jim was diagnosed, it certainly was a shock, something Jim never would of believed it would happen to him. With this new life change, it was daunting to say the least, as well as feeling isolated as no one else we knew had PD. I didn’t want Jim to feel alone during his journey, so I did whatever I could to find out everything about PD, referencing books, on-line studies and the people through the Parkinson’s Programs. One of the biggest things for us was not to forget that we are a couple, and that doesn’t change. We problem solve together whatever life is giving us on a daily basis, we don’t focus on fixing Parkinson’s we focus on how to live with it so we can enjoy life.
Q: What does PWP mean to you?
Carlea and Jim: For both of us, PWP was a real “light bulb” moment. Anyone can read on-line about PD, watch Youtube videos or read books, which all were very helpful to us, but when we joined PWP, we met so many amazing people, all with their own stories of their journey, but once Jim realized everyone else shared the same challenges, whether it be emotionally or physically, he no longer felt alone. We both look forward to our exercise classes and meeting up with our PD family, we have fun participating with everyone and try to make it a fun time, we are all so fortunate to have the PWP, life would be very different for us if it wasn’t for the PWP.