Parkinson’s Awareness Month – Learning to live with debilitating disease

Just as her daughter was off to post-secondary school, a Warfield mom’s plans for more time on the golf course landed in the sand trap when she found out she had Parkinson’s disease.

“I was getting tired and kind of shaking every now and then and I thought, ‘Oh, I’m just depressed’ because my daughter had left for school,” recalls Lil Harper. “But then (the doctor) came right out and said, ‘You have Parkinson’s’ and it was kind of a shock and I went home in a daze and cried for days.”

Harper was 53 years old when she was diagnosed just over 10 years ago with the common degenerative neurological disorder that is a result from loss of dopamine in the brain.

During Parkinson’s Awareness Month, Harper hopes more people are made aware of the disease that about 11,000 people in the province are noted to be suffering with, according to the Parkinson Society of British Columbia.

For most people diagnosed, their minds stay sharp while their movements are limited due to tremors, slowness and stiffness, impaired balance and rigid muscles. As the disease progresses, individuals have difficulty walking, talking and swallowing.

“You have your good days and your bad days, I still do. Some days I can’t even get out of bed and my husband has to help me out,” she said. “I can’t walk very far because my muscles in my lungs don’t function very well and some days it’s hard to climb the stairs.”

Early on, Harper struggled with staying positive but nowadays she has learned to live with Parkinson’s and feels blessed to live in the area she grew up in, surrounded by family and friends.

“It hit and I think for about a year I kind of shut down and didn’t want to see anybody or do anything,” she said.

“You have to first accept what you have and that you can’t change it. Some days you think, ‘why me?’”

Life got easier when she connected with the Trail and Castlegar Parkinson’s support group, which meets once a month to share information, have lunch, listen to guest speakers and do exercises.

With about a dozen members on board, Harper can’t help but think there are residents out there that are ignoring their disease.

“What we find in our community is that people don’t want to admit they have it,” she said.

But Renice Townsend, who runs the local group, said the complex symptoms people with Parkinson’s face can often deter them from social outings.

“It’s a disease that has a lot of hidden characteristics,” said Townsend, who was falsely diagnosed with Multiple Sclerosis before officially finding out she had Parkinson’s in 2004. “We feel a little apprehensive in groups but it’s still important to socialize. You got to remind yourself that OK, yes I find it difficult to mix with people but it’s still important to practice my social skills.”

Townsend recently joined Toastmasters, an organization that works toward developing public speaking and leadership skills, to work on building her confidence up.

To acknowledge the common symptom of the disease, the local group will be viewing a DVD on speech when they meet today at the Colander at 11:30 a.m.

While April is a time to remind residents with Parkinson’s that they’re not alone, September is also a big month with the group’s annual “SuperWalk” fundraiser, which will be held at Gyro Park on Sept. 17.

Money raised locally goes to the Parkinson Society of British Columbia, which puts the funds toward research and distributing information.

Members of the local group pay an annual fee of about $25, which often goes toward sending a member to provincial conferences.

For more information about the Trail and Castlegar Parkinson’s support group, contact Renice Townsend at 367-7437 or email renicetownsend@hotmail.com

Members meet the third Tuesday of every month at the Colander Restaurant in Trail at 11:30 a.m.