Monday , August 8 2022

Mayo Clinic provides treatment options for BC women with Parkinson's – Penticton Western News


A highly anticipated trip to the Mayo Clinic in Rochester, Minnesota has left a salmon arm woman who has Parkinson's disease with mixed feelings.

Maureen Kennah-Hafstein, with her husband Irwin Hafstein, went to the clinic for an evaluation appointment on October 30, which would indicate if she is a candidate for DBS surgery. The operation can result in significant improvement for people with Parkinson's in areas like quality of life, motor control, cognition and emotional well-being.

Maureen's symptoms have deteriorated and if her health is deteriorating too much, surgery is no longer an option.

"The evaluation appointment left us with a mixture of feelings," Maureen writes in an email. "Astonishment that we learned that there was an additional treatment option that we did not know and disappointed to learn that the surgery could not be performed at the clinic until February, although it was decided that I was a good candidate for bilateral STN DBS operation. "

Because there is an additional treatment option available to her, she would not get a preference placement on the US waiting list for surgery.

Maureen expresses her thanks to the generous donations received through fundraising efforts that allowed her to travel to the United States, a journey she describes as "very valuable".

"We returned home with an extensive four-step plan to optimize my treatment plan with a sense of optimism. Due to 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 BC when it becomes necessary. "

She explains that her final trip to the United States for treatment "began with a letter I received as a patient on neurosurgeon Dr. (Christopher) Honey's" unacceptably long "DBS waiting list and asked us to lobby our MLAs to put pressure on the forces -It is hiring a second neurosurgeon and increasing the amount of OR time in an attempt to shorten the two to five year-long wait for DBS surgery in our province, the longest wait in all of Canada. "

Her research soon showed that the waiting list was about a year long across the country.

She says she is now hopeful that she will be able to get the surgery in B.C., but also feels very lucky to have been able to gain access to world-class expertise at doctors at the Mayo Clinic.

"I would recommend that anyone who has stopped treatment options should consider an assessment so that no stone is left unprotected," she writes.

"Although things did not turn out as planned, we came home with a treatment plan that I will follow under my cautious leadership here in Canada. Although we were surprised at the unexpected outcome, we are not disappointed because when I know about the new one The treatment method will work, it should be very close to my Dr. Honey's waiting list for DBS surgery here in Canada. "

Maureen, a former chemist at Eagle River Secondary in Sicamous, expects the transition to the new treatment protocol to be difficult and challenging, but if effective, it will buy her more time before surgery becomes absolutely necessary.

"Meanwhile, it's good to know that my family probably will not need to bear the high cost of the US operation. Remaining funds will be used to support the cost of the new treatment protocol and to support the cost of the operation, regardless of whether it happens BC or US "

She points out that any remaining funds will be given to Parkinson's research.

"In particular, there is a treatment protocol ready for human trials that is the first treatment, which helps stop disease progression rather than just dealing with symptoms that I am particularly happy about and would like to support."

Maureen expresses his appreciation for Shuswap MLA Greg Kyllo, who has helped to get better DBS treatment for her constituents since she first took the letter from Dr. Honey to her office. She also thanks Observer for its continued coverage of her situation and for a first article by former editor Tracy Hughes who helped kick out a comprehensive lettering campaign.

"There is a possibility that another surgeon will be employed to join Dr. Honey to improve waiting times. Together with the doubling of OR time, we should see an improvement soon," she writes.

The Ministry of Health has not yet answered a question from Observer regarding the current availability of DBS surgery in B.C.

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Irwin Hafstein and Maureen Kennah-Hafstein went to the Mayo Clinic in Rochester, Minnesota to see if Maureen would be a candidate for Deep Brain Surgery for Parkinson's disease because the waiting list in BC is so long. (Photo contributed)

Maureen Kennah-Hafstein with some of the supplements she takes every hour to help with her mobility. (Jim Elliot / Salmon Arm Observer)

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