Rudy Erfle and Artemis Erfle are a dynamic couple driven by the love of their family to empower their community and people impacted by Parkinson’s. Fourteen years ago, Rudy first noticed a tremor in his hand while playing summer hockey. The diagnosis of Parkinson's at the age of 47 came as a shock to Rudy and his family, as he had always been active and was younger than the average Parkinson's diagnosis.
After telling the kids immediately, their daughter Marina, who was thirteen, asked, “is Daddy going to die?” Naturally, this close-knit family was upset. For weeks, Artemis was taken aback, but she eventually realized that “nothing changed from yesterday to today, so we can just deal with it, one day at a time.” Rudy himself, after his first Parkinson Canada run, decided to “live in the moment and make a conscious decision not to complain. There is always someone off worse than you, so you have to make the best of it. You have to accept things and work towards a positive change.”
Following a diagnosis, many people cut down their activities and avoid seeing people. “You start to create your own storyline” explains Rudy, “When you tell yourself life is awful, you start to lose hope. You withdraw. In the beginning, I wanted to quit everything. You shouldn’t quit what you love.”
Rudy's family originally insisted that he retire from his own business, Rudy Erfle Woodcraft and Cabinetry, building kitchen cabinets, and bathroom vanities, and take it easy but he persisted. He knew keeping busy would keep him in better shape, mentally and physically. Although Rudy is retired now, he is still involved in building. Artemis emphasizes, “People shouldn't assume that those with Parkinson's are incapable of doing anything. You do need the support of people around you, but people do need to be patient and let a person with Parkinson’s show up.”
Rudy noticed in getting out there “that you have to be smart about adjusting and inventing solutions. Travelling, especially through an airport, could be awkward. I make it easy for myself, whether it’s equipping my cane with a stick to guide me or just asking for help. Once people identify you as having a disability, not specifically Parkinson’s, they don’t step over you. People automatically help out. But you have to see what works for you. Keep trying and inventing solutions.”
Getting others involved requires opportunity, whether it is raising money or being open about Parkinson's. “Parkinson Canada has so many great resources. Our whole family was running marathons and on my tenth anniversary of having Parkinson’s I talked to my daughter Marina about raising more money, so we came up with Rudy's Run.” Rudy said. “It was a big undertaking, but it’s grown and continued from there, including golf tournaments and speaking events. It takes a community.”
In addition to educating the community about Parkinson's disease, Rudy's Run raises funds for research for those living with the disease. If you have an activity that you love, you can start an Active fundraiser too.
Jim Peters sensed something was wrong before an official Parkinson’s diagnosis. As an always active person involved in running and golf, Jim was well aware of his body and the suspicious gradual changes to his health.
It's common for twitches to be mistaken for nervousness or dizzy spells caused by skipping a meal, but after a series of events specific to Jim, he began asking questions. “It started with shaking,” Jim recalls, “then became a tremor in my lower lip, followed by one in my left thumb.” After consulting with his doctor, he underwent a series of scans, including an MRI. It wasn’t until confirmed by his neurologist that Jim was diagnosed with Parkinson’s.
Despite already experiencing symptoms prior to an official diagnosis, Jim became depressed and had difficulty dealing with this new information. Jim remembers, “It really stuck with me. It was a dark time.” Although depression is common with Parkinson’s, Jim was fortunate to be supported by his wife and four daughters. “It’s like my life flashed before my eyes. At 54, I wondered how my life would be at 80 with Parkinson's. I was desperate at that stage. Researching online to find a cure until I realized I didn’t have to live the next 30 years all at once.”
From then on, Jim was determined to live his life one day at a time. “The good thing about Parkinson’s is there is time. You're told it's a degenerative disease that progresses, but it doesn't have to be that way. Like a graph, you will have periods of decline and improvement, so enjoy the good days and tolerate the bad, but know there is always a better day ahead."
Jim, now 67, also recommends staying active. “If you went for a run today, go for a run tomorrow. Even in aging, we experience gradual decline, we don’t run as far or as fast, but exercise is terribly important. For me running, boxing or any high-intensity activity is good. Walking is good too. Whatever you can do, you should keep doing.”
In staying active, it’s good to keep the mind active as well. Jim, an accountant since 1985, still works from home with some minor adjustments to his schedule. “If I’m having a bad day, I balance the workload. I’m fortunate to be able to work on my own. It gives me the flexibility I need.” Although Jim works from home, he still experiences common misconceptions about Parkinson’s. “When someone sees you shaking, they think your brain is shaky too. They equate physical ability with cognitive ability. One day I want to make a t-shirt that says: Yes, I know I’m shaking. I got over it now it’s your turn.”
Unfortunately, from experience, Jim knows newly diagnosed people tend to change their lifestyle and go into hiding. “Getting past self-consciousness is not easy. But, the more people see people living with Parkinson's, the more awareness will develop.”
In sharing his story and raising awareness for Parkinson’s, Jim is excited to get out there and have “a chance to be included in the conversation.”
To raise money for people impacted by Parkinson’s, Jim Peters and his daughter Rebecca started an annual golf tournament: Chipping in for Parkinson’s. If you are passionate about something, put your fundraising ideas to work and set up your own Custom fundraiser.
As a drummer for the band Mountain Head, Kevin Farmer knows one of the most important things any musician can do is learn how to listen. Sixteen years ago, Kevin’s father, Alan Farmer, was diagnosed with Parkinson’s. Kevin, then 18, was living at home and remembered his dad gathering the family to explain the news. “He seemed pretty normal at that point. The symptoms were minimal. I wasn’t aware of the impact, how challenging it would get for him.”
Having a close relationship with his dad, Kevin wanted to do something to help. After learning about the symptoms and seeing how his father developed, he wanted to raise more awareness and funds towards a cure. “Even when I tell people today, they have no idea what Parkinson’s entails. They may recognize Michael J. Fox, but there’s not enough information, not enough awareness out there. Many people believe Parkinson’s is only tremors. And my dad is kind of the opposite. He freezes up, where he can’t move or get a thought out and it can happen anytime. He is starting to know when it is coming on and tries to stop it from happening in advance. People just aren’t aware of the unique symptoms.”
After moving out on his own, Kevin noted Parkinson’s impact on the way they communicated and did things together. Even with best efforts, completing home projects became increasingly challenging, and at times his dad's speech was barely audible. “He sometimes can’t get even a whisper out. Even if you don’t understand at first, you can’t give up. Ask. Repeat.” Kevin encourages. "He exercises and works with a therapist. Rather than telling him to speak louder, we ask him to think louder. Sometimes, thinking loudly helps to get it out of the body."
Communicating creatively, and expressing a little hope, can make a big difference. As we all work toward a cure, more is possible. “Always having a bit of hope goes a long way.” Kevin reminds, “I remember before my dad had deep brain surgery, everyone thought he’d be in a wheelchair. My parents even bought a new house and ordered wider doors to accommodate one. After the surgery, he was much more mobile than predicted. It was night and day.”
Life can be full of uncertainty and in navigating a rapidly changing world, restoring creative connection is crucial. “Opening up your mind and being creative about raising money can inspire hope.” Kevin and his father were already involved in Parkinson Canada SuperWalk, but Kevin wanted to contribute in his own way. He wanted to share his talents drumming. “Not everyone can drum, but anyone can use their talent” We all have the ability to contribute, regardless of what talent we possess. Whether it’s running, dancing, or drumming you just have to pace yourself.” Inspired by my father, I combined my love of playing drums with a cause that I am truly passionate about.”
Since 2008, Kevin Farmer, Alan Farmer and family participate in the Parkinson Canada SuperWalk, raising money annually that goes towards, research, education and support for people living with Parkinsons. During the pandemic, Kevin came up with the idea to create and host Drums for Parkinson’s, a live streaming event hosted on Facebook, YouTube, and Twitch. You can set up your own Livestream fundraiser to tell your story and engage support.
Claire Giallonardo loved her work. She had a demanding job in high finance that required working long hours with still finding time for family and community. Originally from Timmins, Ontario, Claire is proud of her French heritage. As a fully bilingual person with several credentials in business, marketing and finance, Claire was well-established in her big city job and commuting home to Brampton.
In 2014, everything changed; Claire was diagnosed with Parkinson’s. Trying to juggle her fast-paced life, Claire was forced to slow down. “It was a big shock. I commuted every day for work and kept falling asleep behind the wheel. Stopping working at 57 was worse than the diagnosis and in 2017, there was no option to work from home.” Claire, upset, had to undertake the giant task of reorganizing her life and finances. “Now Parkinson’s is the boss. I must rest and take breaks until I get to do what I love to do.”
Claire was compelled to create art following a much-needed trip to Cuba. She found herself captivated by the vivid colors and paintings around her. “Nature and the arts have always left an important imprint on me. It makes me happy. I don’t know where it comes from, but I enjoy it. I enjoy the freedom it gives me.” It was at this point, upon returning to Ontario, that she met a group of French-speaking retirees who gave her the support she needed to continue.
The support Claire receives from her group motivates her to help others, including her brother. In her family, Parkinson's is well known. In addition to her grandfather, her brother also has Parkinson's disease, even though they both approach it differently. “It’s frightening, and you can’t hide it. Symptoms are visible. You have to embrace it and share it with other people. I’ve learned so much more from people living with Parkinson’s. My brother is shyer. People can only join a group or share when they are ready.”
Claire admits with her condition, there is anxiety and moments where she can’t walk and is exhausted, but she still manages to get out and be social. Last year, she was a member of a choir, and she continues to volunteer and raises money. Through SuperWalk and Facebook, she has raised a significant amount of funds for Parkinson Canada. Claire has high hopes for 2023. She is excited for the marriage of her son in August, as well as planning to exhibit her art. She also hopes for a cure.
Like Claire, you can share your fundraiser with friends and family online. Donations raised can help you reach your goal and make a lasting impact. Get started, Fundraising Your Way with Parkinson Canada.