Maureen Kennah-Hafstein is a former chemistry teacher in Sicamous who has had Parkinson’s disease for 12 years. (Observer file photo)

Maureen Kennah-Hafstein is a former chemistry teacher in Sicamous who has had Parkinson’s disease for 12 years. (Observer file photo)

Mayo Clinic provides treatment option for BC woman with Parkinson’s

Surgery delayed as resident seeking U.S. help due to BC waitlist is given alternative plan

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.

Related: Salmon Arm woman fights for a life-changing 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.

Related: Shuswap resident forced to try U.S. for Parkinson’s remedy

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.”

Related: Silent auction to raise funds for crucial surgery

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.


@SalmonArm
marthawickett@saobserver.net

Like us on Facebook and follow us on Twitter

Get local stories you won't find anywhere else right to your inbox.
Sign up here

 

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

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

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

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

Just Posted

Interior Health update. File photo.
86 new COVID-19 cases, two more deaths in Interior Health

The new deaths are from Heritage Square, a long-term care facility in Vernon

Caroline McKay
COLUMN: Bring books out of hibernation for the new year

Plenty of lesser-known works from famous authors available from the library

Nate Brown photo
Okanagan-Shuswap says goodbye sunshine, hello winter

Temperatures are forecasted to drop by mid-next week

One Okanagan man bought and delivered enough food for 10 Christmas dinners for families and individuals in need. (Bruce Shouldice photo)
Okanagan man makes a difference at Christmas

Columnist Carole Fawcett shines light on Good Samaritan

The Peach is looking ready for its COVID Christmas. (Monique Tamminga/Black Press)
T’was the night before Christmas in the Okanagan

It’s true that this year has had sadness aplenty, we’ll never forget the year 2020

President Donald Trump speaks to the media before boarding Marine One on the South Lawn of the White House, Tuesday, Jan. 12, 2021 in Washington. The President is traveling to Texas. (AP Photo/Gerald Herbert)
Black Press Weekly Roundup: Top headlines this week

In case you missed it, here’s what made waves throughout the week

Seasonal influenza vaccine is administered starting each fall in B.C. and around the world. (Langley Advance Times)
After 30,000 tests, influenza virually nowhere to be found in B.C.

COVID-19 precautions have eliminated seasonal infection

Prime Minister Justin Trudeau listens to a question during a news conference outside Rideau cottage in Ottawa, Friday, January 8, 2021. THE CANADIAN PRESS/Adrian Wyld
Trudeau says Canada’s COVID vaccine plan on track despite Pfizer cutting back deliveries

Canadian officials say country will still likely receive four million doses by the end of March

Jobs Minister Ravi Kahlon shared a handwritten note his son received on Jan. 13, 2021. (Ravi Kahlon/Twitter)
Proud dad moment: B.C. minister’s son, 10, receives handwritten note for act of kindness

North Delta MLA took to Twitter to share a letter his son received from a new kid at school

Lilly and Poppy, two cats owned by Kalmar Cat Hotel ownder Donna Goodenough, both have cerebellAr hypoplasia, a genetic neurological condition that affects their ability to control their muscles and bones. Photo by Alistair Taylor – Campbell River Mirror
VIDEO: Wobbly Cats a riot of flailing legs and paws but bundles of love and joy to their owner

Woman urges others to not fear adopting cats with disabilities

A COVID-19 outbreak at Vernon's Heritage Square long-term care home has claimed seven people. (Jennifer Smith - Morning Star)
Two more COVID-19 deaths at Vernon care home

Heritage Square has now lost seven people due to the outbreak

Chief public health officer Dr. Theresa Tam provides an update on the COVID-19 pandemic in Ottawa on Friday, Jan. 8, 2021. THE CANADIAN PRESS/Sean Kilpatrick
Canada’s top doctor says to avoid non-essential travel as B.C. explores legal options

Premier John Horgan says he is seeking legal advice on whether it can limit interprovincial travel

(Big White Ski Resort photo)
13 more cases of COVID-19 tied to Big White Mountain cluster

This brings the total case count to 175, of which 32 cases are active

RCMP on scene at a home on Sylvania Cres. (Phil McLachlan /Capital News/FILE)
Two Kelowna men arrested after Rutland home invasion

Two Kelowna men, including a prolific offender, facing slew of potential charges

Most Read