Gifford © All Photos 2018-2019 NOAH ASANIAS
Larry Gifford was 45 years old when he was diagnosed with Young Onset Parkinson’s Disease.
“You don’t know the symptoms you’re experiencing are Parkinson’s until you get the diagnosis,” he recalled.
The first thing he noticed was a hitch in his walk—something always felt off, as if his shoes were too heavy. Even after switching to lighter shoes, his feet still dragged. He started to wonder if maybe it wasn’t the shoes. In conversations, Larry recalled feeling like he was always minutes behind the rest of the group. Was he tired from a long week, or was it something else?
The final straw was when he reached for a glass of water and found that his arm was shaking uncontrollably—that was when Larry realized that it was more than just a tremor.
There are approximately 100,000 people with Parkinson’s in Canada, and approximately 15,000 in British Columbia, according to information from the Ministry of Health, 2019/20. Up to 20 percent of individuals, like Larry, develop Parkinson’s symptoms before the age of 60.
While there are many theories about why the cells die, the exact reasons are unknown at this time. The progression of the disease and accompanying symptoms vary with each individual.
Parkinson’s disease (PD) is caused by a degeneration of the cells which produce dopamine in the substantia nigra area of the brain. Dopamine is a brain neurotransmitter which sends signals from one nerve cell to another. It affects the parts of the brain which control smooth, voluntary movements such as walking and writing and is also essential for involuntary movements, including control of blood pressure and bowel function. The symptoms of Parkinson’s appear when over half of the dopamine-producing cells are lost. While the root cause of the disease is unknown, genetics and the environment may work together to cause the cells to become damaged or destroyed.
While most people have heard of Parkinson’s disease, the range of symptoms experienced by patients and the ripple effect the condition has on friends and family are lesser understood and receive considerably less attention.
Parkinson’s is more than a tremor. The disease can affect all aspects of one’s life, and there is currently no known cure, though many people live full, productive lives.
“It is not a setback or a bump in the road,” Larry wrote in a letter to his younger self. “It’s our life. Acknowledging, embracing, or owning the diagnosis is not surrender. It’s taking the power of the Parkinson’s back. Parkinson’s has not defined you up to this point and it is not who you are. It is a reality of your life that you must manage with discipline.”
Living with Parkinson’s can be a difficult journey, and some days are easier than others. It means adjusting to your diagnosis, recognizing that life has changed, maintaining independence, doing your best to live well, and at the same time acknowledging when seeking help is appropriate. Parkinson Society BC (PSBC) has resources to help you and your family at every stage of your Parkinson’s journey.
For PSBC Board Member Richard Mayede, who was diagnosed with Parkinson’s in 2005, joining the non-profit gave him access to an understanding and sympathetic community. It allowed him to recognize his passion for advocacy. In a letter to his younger self, Richard said he wished he had reached out sooner.
“The other thing you should do is get in touch with PSBC,” he wrote. “Don’t be so hung up about seeing other people with Parkinson’s. The good thing is you do take action and get on the board, and help out in a number of ways that help many others with PD. That’s the best thing you will find out by getting to know the staff and members of PSBC. They are all unique individuals who care about and care for people with PD—and the friendships you develop with people with Parkinson’s and their carepartners are truly treasures of the heart.”
From participating in Parkinson SuperWalk, being at PSBC info booths, to sharing his story on the radio, Richard is determined not to let Parkinson’s control his life. He is constantly overcoming each obstacle with his love for sports, creativity, and making a difference in his community.
Richard hopes that PD can be understood better in our world, “If you met someone with Parkinson’s, you’ve met one person with Parkinson’s. Having PD is a journey that’ll be different for everyone. Yes, some symptoms are similar to all of us, but each of us will face things in our own way.”
Similarly, Larry hopes that sharing his Parkinson’s story will inspire others to do the same. He explains, “I’m trying to start a conversation. I encourage everyone who has Parkinson’s to break the silence to help end our suffering. Let’s raise awareness and funds. This is our disease, we should own it and find a way to make our lives better.”
At Parkinson Society British Columbia, we are inspired every day by the strength and resilience of our community. Together, we are united in our commitment to the advocacy, research, and fundraising efforts that are bringing us closer to a future without Parkinson’s disease. Join us and champion the cause again this year in the annual Parkinson SuperWalk, September 10th and 11th. Celebrate and honour all those touched by Parkinson’s across the province.
Learn more at parkinson.bc.ca/how-to-help
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Established in 1969, Parkinson Society British Columbia is a non-profit organization governed by a volunteer Board of Directors. The Society is supported entirely by donations from individuals, members, corporations, foundations, and the dedicated efforts of volunteers.
