April is Parkinson’s Awareness Month
St. Andrew’s Steve Van Vlaenderen was diagnosed with Parkinson’s disease in 2011. Since then, he has learned much more about the condition and has become a strong advocate for patients’s needs and the need for more research to discover better treatments or a cure. Since April is Parkinson’s Awareness Month, Van Vlaenderen has agreed to share some of his story and advocacy work.
“Parkinson’s is a neurological disease that is progressive. It gets worse and worse and worse. I’ve had it now for 13 years since my diagnosis,” said Van Vlaenderen.
Residents in both St. Andrews and Selkirk will likely know Van Vlaenderen as the former owner of Stronghold Self Storage with his partner Darlene Hildebrand.
Van Vlaenderen is a very active person having raced cars, participated in competitive kayaking and taken up sailing while stoking his passion for photography before his diagnosis. Since his diagnosis, he has used his sailing skills to spread the word about Parkinson’s, become the author of a photography book that benefits Parkinson’s research, and took up bodybuilding for a time to show that a Parkinson’s diagnosis doesn’t mean that people should limit themselves.
The first signs of Van Vlaenderen’s Parkinson’s started over a decade ago.
“I went to my doctor and my middle finger would pulsate and we couldn’t figure out why. That was about a year before my official diagnosis,” said Van Vlaenderen.
His primary care doctor sent him to a neurologist to learn more.
Van Vlaenderen says that in hindsight he may have had Parkinson’s for a decade before it was recognized. He explained that changes to his mood or his lifestyle that he recognizes now as Parkinson’s were things that he chalked up to aging previously.
He explained that his diagnosis, once tested, came quickly.
“It was a series of questions that [the neurologists] asked me, cognitive tests, and hand-eye coordination. There were actually two neurologists, one from the States and one at the Movement Disorder Clinic in Winnipeg. They examined me separately and they both came back and they said you have Parkinson’s,” said Van Vlaenderen.
When he was diagnosed, he didn’t know what Parkinson’s was or how devastating it could be.
After learning more and becoming an advocate, he realized that this lack of knowledge about the disease before his diagnosis was common.
“Parkinson’s itself is a devastating disease. It strips you from the inside out. It strips you of your ability to live and do normal things. You could have 100 people diagnosed with Parkinson’s in a room and not one person will be the same,” said Van Vlaenderen.
The reason that Parkinson’s disease is so devastating is that it’s a neurodegenerative disease. Current research shows that Parkinson’s disease is caused by the cells that produce dopamine in the brain dying. Since dopamine carries signals between the nerves in the brain, the diagnoses of Parkinson’s affects every aspect of patient’s lives.
Van Vlaenderen likened the condition to running a car while it is almost out of gasoline. Nothing really works correctly.
Common symptoms include tremors, slowness and stiffness, impaired balance, and rigidity of the muscles. Other symptoms can be fatigue, soft speech, problems with handwriting, stooped posture, sleep disturbances and mental health can be affected causing depression, anxiety or apathy.
Patients can live with Parkinson’s for years but there is currently no cure.
“It affects your independence but it also affects your partner. It affects your family so not only does the person have Parkinson’s but, for family members, they don’t feel the pain but they feel the pain,” explained Van Vlaenderen.
A simple example that Van Vlaenderen relayed from his personal life is that he has been a lifelong photographer. Because of Parkinson’s, he can’t carry his equipment around without help. This extends to other aspects of his life as well.
Another symptom related to Parkinson’s that Van Vlaenderen talked a bit about affecting his life is having a frozen facial expression. Because a large portion of communication is not just the words that we say but the expressions on our faces as we say them, this has affected his ability to communicate.
These are just some small ways that symptoms that people often don’t know are part of the disease affect daily life. There are also the more well-known symptoms that affect mobility and independence.
Van Vlaenderen first started sharing information and advocating for Parkinson’s research a few years after his diagnosis. Having sailed on Lake Winnipeg, he and Hildebrand decided to partner with Parkinson Canada to sail around the Great Lakes in a journey that they called ‘Sail On with Parkinsons’. Throughout their journey, they stopped at various ports sharing about Parkinson’s disease and connecting with others with the disease.
This advocacy journey took place until 2020 when COVID-19 made travel impossible. Not one to slow down, Van Vlaenderen took his passion for photography and turned that into another way to bring awareness to Parkinson’s disease and the need for more research.
“I was driving Darlene absolutely insane pacing back and forth. We were isolated remember. You couldn’t go anywhere. She said, “You love taking pictures. Why don’t you take your camera and go and take pictures?’,” said Van Vlaenderen.
He got in his vehicle and went out to take photos of landscapes or wildlife not knowing that this was going to turn into something more. Outside of Beausejour, he found an over 100- year-old car parked in the trees. From there, the inspiration to take photos of vintage cars that had been left in place struck and he eventually published his photos in his first book Vanishing Wheels.
Proceeds from this book go to Parkinson Canada.
Parkinson’s is a disease that affects all aspects of a person’s life and though publishing a book is an incredible accomplishment Van Vlaenderen shared that he didn’t feel the happiness that you’d typically think someone completing a momentous project like this might.
“When you have Parkinson’s, you have apathy and so the emotion of seeing my finished product I couldn’t feel it. Mentally I knew it and I was ecstatic but emotionally I didn’t feel anything. Emotion is robbed from you. That’s what dopamine does,” he explained.
This is why Van Vlaenderen says it’s so important that there is research done to find better treatments and hopefully in the future a cure.
He also believes that the disease needs to be tackled with increased support for people with the disease and their care partners.
Something that Van Vlaenderen suggested might be a good service for people with Parkinson’s in the future would be a program where volunteers take people with Parkinson’s out for walks or to run errands. He says that this would be good for people with Parkinson’s because it is a way to keep active, both physically and socially, and it also helps the care partners who can use that time to decompress while knowing their person is safe.
“I worry about my partner because she has her lifestyle and she’s worried about me so she makes sacrifices,” he explained.
Van Vlaenderen’s advice for people diagnosed with Parkinson’s disease is to keep living their lives even though that can be easier said than done.
“Keep following your dreams. Keep working your way through it no matter what. I think caregivers and care partners are the most important people in your life. You also need some sort of social group. Talk to your friends. Have coffee. Talk about nothing. Just continue to live your life. If you have Parkinson’s that’s hard and it’s easier to say than to do,” he said.
To learn more about Parkinson’s visit Parkinson Canada at www.parkinson.ca. You can also check out Van Vlaenderen’s book Vanishing Wheels at the McNally Robinson bookstores in Winnipeg as well as through Van Vlaenderen’s website www.vanishingwheels.com.
