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Kootenay man reflects on 10 years living with Parkinson’s disease

Today (April 11) is recognized as World Parkinson’s Day
Todd Wallace has lived with Parkinson’s disease for 10 years. Photo: Jackie Jonkheid

2023 marks 10 years since Todd Wallace, 59, was first diagnosed with Parkinson’s disease.

His circumstances have greatly evolved over the decade; he’s travelled alone after a 30-year union ended, he remarried and bought a new home in Salmo, he lost his father, and recovered from surgery. Through it all, he’s been challenged — not defined by — this life-changing chronic disease characterized by stiffness and tremors.

“It’s very important when you or someone you know gets diagnosed with PD (Parkinson’s disease), it’s not the end of your life,” Wallace begins.

He shares a quote from his March 2023 neurologist’s report which says, “With him being 59 , I do expect he has a long life ahead of him otherwise.”

Wallace adds, “I truly believe with positive energy and surrounding myself with supporting friends and an engaged health care team, I will live a long life.”

His story comes as today (April 11) is recognized around the globe as World Parkinson’s Day.

The City of Trail joins 11 landmarks across British Columbia in recognizing the day by lighting the Victoria Street Bridge in teal and magenta lights.

April is also Parkinson’s Awareness Month, wherein the Parkinson Society of British Columbia spreads the message that the disease is “more than a tremor.”

“My Parkinson’s story/life is always evolving and changing which is normal for everyone in our world,” Wallace shares. “Most days living with PD is okay, but there are other parts of my days that really suck having PD.”

While many people have heard of Parkinson’s disease, often, the first symptom that comes to mind is tremor. In reality, the lived experience with Parkinson’s may include a constellation of symptoms such as freezing, pain, depression and anxiety, sleep difficulties, and speech and swallowing issues.

As public awareness of the unique presentations of Parkinson’s is limited, the B.C. society says many individuals living with the disease have reported situations that resulted in stigmatization and discrimination.

“I have learned over my many years of dealing with health care issues that you need to be your own advocate for proper care,” Wallace says. “This is important.”

When Wallace was first diagnosed, he became a member of the Parkinson Society Of B.C. He also joined the Trail/Castlegar Parkinson’s support group which met 10 times a year pre-pandemic, the third Tuesday of the month, from 11:30 a.m. to 1 p.m. at The Colander Restaurant.

Several years ago, the group also held weekly exercise sessions in Trail, facilitated by a physiotherapist that specializes in Parkinson’s movement .

Sadly, COVID restrictions stopped all meetings, and the person that spearheaded the exercise group, Renice Townsend, passed away in August 2021. Townsend shared her Parkinson’s journey with the Trail Times many times over the years; her joy for life and determination in staying active was inspirational. She was that person who never gave up and her loss is felt by many, Wallace said. He’s hopeful group exercise will start again.

In the meantime, he keeps up with a routine physio session, as well as yoga and activities that involve socializing and movement.

“Most research suggests that exercise is the best medicine/prescription for slowing down Parkinson’s disease progression,” he continues. “I believe the reason for my success living with PD, is having a passionate partner that wants to live a healthy life which means eating healthy, exercising and most importantly helping each other.”

The Victoria Street Bridge in Trail will be swathed in magenta and teal lights on April 11 in recognition of World Parkinson’s Day. Photo: Don Conway/City of Trail Facebook
The Victoria Street Bridge in Trail will be swathed in magenta and teal lights on April 11 in recognition of World Parkinson’s Day. Photo: Don Conway/City of Trail Facebook

Now, more than ever, the society emphasizes that furthering public understanding of Parkinson’s disease is critical; for early detection and diagnosis of the disease, and to reduce stigmatization and discrimination, which can lead to isolation and loneliness.

Wallace concedes that residing in this beautiful area of the province can present some unique challenges for people living with a chronic progressive disease. For example, rural living means travelling long distances for consultations and appointments.

“I have learned that asking for help is key to overcoming any challenge, which may mean getting someone to drive you to a medical appointment,” he adds. “With modern communication technology anything is possible.”

Approximately 15,000 British Columbians have been diagnosed with Parkinson’s disease, the second most common neurodegenerative disorder after Alzheimer’s disease. Around 12 per cent of Canada’s population over the age of 80 is living with the illness, and the society says that number is expected to double by 2040.

“An important part of living with chronic illness is to have a health care team supporting you as you deal with your illness. My team consists of my loving wife, my family doctor, Salmo Wellness Centre staff, movement disorder specialist- neurologist, physiotherapists, speech therapist, community nurses, counselors, and all my friends that support me,” Wallace adds.

“Another point to remember is that everyone is different, so not every person with PD is the same.”

Read more: Parkinson’s disease: It’s more than ‘just a tremor’

Read more: Get up and get moving

Read more: Walk for Parkinson’s disease

Looking for support?

Contacts for the Trail-Castlegar Parkinson’s Support group are: Patti L. 250.367.9258; Barb J., 250-368-6864.

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Sheri Regnier

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