Maureen Kennah-Hafstein remembers the day well.
She had just returned from visiting family in New Brunswick. She woke up in the morning feeling different, light-headed and uneasy.
“Don’t leave me, stick with me today, I feel like I’m going to fall over,” she told her spouse, Irwin.
And that feeling never went away.
Maureen is referring to Parkinson’s, a disease she has lived with for 12 years. That day was just before her 50th birthday.
Now, after months of lobbying and years of suffering, she has reason for hope.
Maureen had been employed as a math and chemistry teacher, grades eight to 10, at Eagle Valley Secondary. She could no longer work.
“I was at the top of my career; I felt I was a good teacher at the top of my game, and I was chopped down at the knees,” she says. “Teaching is hard and then you finally feel good about it.”
Her symptoms slowly worsened. The worst, she says, are the side effects from the drugs. The disease creates lack of movement, muscles of stone. So the drugs produce movement, often relentless.
“It’s a trade off. If you want to move, you have to move too much. The choice is move, or not move.”
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With help from a doctor of Chinese medicine, Maureen found an herb that worked for her for years. It helped control her symptoms – until it didn’t.
She learned of Deep Brain Stimulation, a surgery that can help, but can only be done in a window of time before symptoms worsen too much. The waitlist in B.C. was two to five years. As a patient of neurosurgeon Dr. Christopher Honey, she received a letter asking patients to lobby their MLAs to pressure the province to hire a second neurosurgeon and increase operating room time.
Maureen speaks highly of Shuswap MLA Greg Kyllo and all the efforts he made on her behalf. With steadfast determination, Maureen started her own letter-writing campaign, as well as looking into other avenues for surgery as her symptoms worsened. Her sister Jane in New Brunswick started a GoFundMe campaign so Maureen could get assessed for surgery in the U.S. There she was told to replace the herb with another drug. If that last drug didn’t work, she would need the surgery.
Maureen has agonized about having received such kindness in the form of donations yet hasn’t had to have the U.S. surgery. Her sister pointed out her treatment will still be expensive, and they agreed that any funds left over would go to Parkinson’s research.
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In December, Maureen stopped taking the herb too quickly and nearly died. However, strength and good care revived her. She has since tried the new drug but it hasn’t helped.
In February, Maureen heard the news she’d been lobbying so hard for since May of last year. She feels very proud of the success. Provincial Minister of Health Adrian Dix announced that beginning April 1, access to DBS surgery for patients whose symptoms are no longer responding to medication will be improved, with the number of surgeries per year doubling to 72 in 2019/2020.
The Observer checked with the ministry last week to see if that’s still true.
“We can confirm that yes, the ministry is committed to improving access to DBS, and the expanded program will start April 1st,” stated a ministry email, suggesting the newspaper check back in May or June for an update.
According to her spot on the waitlist, Maureen will have the surgery, at the latest, by the end of July. She, like others in her situation, can’t afford to wait any longer.
“It can’t come soon enough for me. The wait is an endurance test.”
@SalmonArmmarthawickett@saobserver.netLike us on Facebook and follow us on Twitter
