After 12 years of living with Parkinson’s disease and more than two years of waiting for a life-altering procedure called Deep Brain Stimulation, Maureen Kennah-Hafstein has finally received the word she has been awaiting for so long.
She now has a scheduled date for the surgery. Sept. 17.
While this news is most welcome, the worry now is – will it be soon enough?
To capture the optimal benefit from the surgery, she can’t wait too long. The best outcome she can expect from the surgery will only be as good as her best “on” time with medication.
“With the medication quickly failing to help me, I worry every day that I will lose the last bit of normalcy that I still manage to get. DBS cannot come soon enough. I could lose this critical window of opportunity any day,” she says.
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.
She did just that, putting in a lot of time and energy.
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In February of this year, the Ministry of Health issued a news release stating: “Beginning April 1, 2019, people with Parkinson’s disease whose symptoms can no longer be controlled with medication will have improved access to deep brain stimulation (DBS).”
The health ministry release stated a provincial program was being established at UBC hospital that will maintain a centralized waitlist. It also promised increased operating room time, as well as the recruitment of an additional neurosurgeon.
In an email response to the Observer’s questions about the promised improvements, a ministry spokesperson wrote on June 21: “We are actively recruiting a second surgeon as part of the five point plan outlined in the media release below.”
That media release, dated Feb. 5, was the same one the Observer sent to the ministry with the request for information.
“The bottom line for me is that every day counts,” writes Kennah-Hafstein in an email to the Observer. “I am in the advanced stages of this cruel, progressive, degenerative disease and I am scared. I have made a conscious decision to distract myself by working to the point of exhaustion every day in my beautiful yard and house. With the help of my incredible family and friends I am able to get out to do some errands as long as my symptoms aren’t too severe. I feel my world shrinking daily however!”
Kennah-Hafstein says she appreciates the hiring process takes time, and that everyone involved understands the urgency.
However, she points out that in February, Health Minister Adrian Dix “made a pretty big promise to eliminate the present waitlist by April 2020 and I intend to hold him responsible for that.”
Although Kennah-Hafstein remains optimistic and expresses gratitude for her life, friends and family, she does speak of her fears. Her swallowing has been noticeably deficient in the past couple of weeks, she says. The times where her body is not undergoing uncontrollable movements are few and far between.
“But my biggest worry is cognitive decline.”
She has had very few lapses, and feels that so far she’s doing well.
“I’ve kept myself pretty busy with reading. If I can still write a letter, I think I’m doing pretty good.”
Nonetheless, September seems like a long way off.
@SalmonArm
marthawickett@saobserver.net
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