A much-anticipated trip to the Mayo Clinic in Rochester, Minnesota has left a Salmon Arm woman who has Parkinson’s disease with mixed emotions.
Maureen Kennah-Hafstein, with her spouse Irwin Hafstein, travelled to the clinic for an assessment appointment on Oct. 30, which would show if she is a candidate for deep brain stimulation (DBS) surgery. The operation can result in significant improvement for those with Parkinson’s in areas such as quality of life, motor control, cognition and emotional well-being.
Maureen’s symptoms have been getting worse and, if her health deteriorates too much, the surgery is no longer an option.
“The assessment appointment left us with a mix of emotions,” writes Maureen in an email. “Excitement about learning that there was one more treatment option that we were unaware of and disappointment in learning that the surgery could not be performed at the clinic until February, even though it was determined that I was a good candidate for bilateral STN DBS surgery.”
Because there is one more treatment option available to her, she would not receive preferential placement on the U.S. waitlist for surgery.
Maureen expresses her thanks to the generous donations received through fundraising efforts which enabled her to make the trip to the U.S., a trip she describes as “very worthwhile.”
“We returned home with a comprehensive four-step plan to optimize my treatment regime with a sense of optimism. Because of the delay in being able to access the surgery at the Mayo Clinic, there is a good chance that I will be able to get the surgery in B.C. when it becomes necessary.”
She explains that her eventual journey to the U.S. for treatment “started with a letter I received as a patient on (neurosurgeon) Dr. (Christopher) Honey’s ‘unacceptably long’ DBS waitlist, asking us to lobby our MLAs to put pressure on the powers-that-be to hire a second neurosurgeon and to increase the amount of OR time in an effort to shorten the two- to five-year wait for DBS surgery in our province, the longest wait in all of Canada.”
Her research soon showed that the waitlist was about a year long across the country.
She states she is now hopeful she will be able to get the surgery in B.C., but also feels very fortunate to have been able to access the world-class expertise of the doctors at the Mayo Clinic.
“I would recommend that anyone who has run out of treatment options should consider an assessment so that no rock is left unturned,” she writes.
“Even though things didn’t turn out as planned, we returned home with a… treatment plan that I will follow under the careful guidance of my medical team here in Canada. Although we were surprised by the unexpected outcome, we are not disappointed because by the time I know whether the new course of treatment will work, it should be very close to my turn on Dr. Honey’s waitlist for DBS surgery here in Canada.”
Maureen, who is a former chemistry teacher at Eagle River Secondary in Sicamous, expects the transition to the new treatment protocol will be difficult and challenging, but if it is effective it will buy her more time before the surgery becomes absolutely necessary.
“In the meantime, it is good to know that my family probably will not have to endure the high cost of the U.S. surgery. The remaining funds will be used to support the cost of the new treatment protocol and to supporting the cost of the surgery, regardless of whether it happens in B.C. or the U.S.”
She points out that any remaining funds will be donated to Parkinson’s research.
“In particular, there is a treatment protocol ready for human trials that is the first course of treatment that helps stop the disease progression instead of just managing symptoms that I am particularly excited about and would be happy to support.”
Maureen expresses her appreciation for Shuswap MLA Greg Kyllo, who has been helping to get better DBS treatment for his constituents since she first took the letter from Dr. Honey to his office. She also thanks the Observer for its continuing coverage of her situation and for an initial article by former editor Tracy Hughes that helped kick off a widespread letter-writing campaign.
“There is a possibility that another surgeon will be hired to join Dr. Honey to help improve the wait times. Along with the doubling of the OR time, we should see an improvement soon,” she writes.
The provincial Ministry of Health has not yet responded to a query from the Observer regarding the current availability of DBS surgery in B.C.