Maureen Kennah-Hafstein hits the heavy bag during a workout designed to help Parkinson’s patients improve their health. (File photo)

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

GoFundMe account to help fund crucial surgery as BC waitlist too long

As the window of hope narrows, the push for a crucial surgery for a Salmon Arm woman with Parkinson’s Disease is now turning to the U.S.

Maureen Kennah-Hafstein has been lobbying the province for months for access to Deep Brain Stimulation (DBS), a surgery that can reduce the symptoms that have increasingly taken over her life since being diagnosed 12 years ago.

A former chemistry teacher at Eagle River Secondary in Sicamous, she has now reluctantly begun preparations to have the surgery done south of the border.

The neurological disorder has robbed her of her ability to speak and, for a few hours each evening, even to stand. But she can text, and with that remaining tool she launched, in aid of all people in a similar situation, her campaign to have the provincial government open a second operating room (OR) in B.C. for DBS.

Kennah-Hafstein has been on a waitlist in B.C. for 14 months already and could have to wait at least another seven.

Related: And in this corner, hope

Escalating the urgency for her is the fact that if a patient’s symptoms are too severe, the operation may no longer work and those patients become ineligible for the procedure.

Because the hope of her getting the surgery in B.C. in time has now all but died, she has made an appointment for Oct. 30 to be assessed at the Mayo Clinic in Rochester, Minnesota. The assessment and surgery will amount to about $75,000 in U.S. dollars, or close to $100,000 Canadian. With all the other expenses, the total could reach or exceed $200,000.

To aid in this expensive last resort, her sister Jane Williams, who lives in Nova Scotia, has launched a GoFundMe account for her entitled, “Urgent DBS Surgery for Maureen!”

Kennah-Hafstein, who remains positive and grateful, expresses her appreciation for those who have contributed funds so far.

Last week she had to provide a $9,300 down payment for her assessment at the clinic, money that came from the GoFundMe account.

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

Although the provincial government has responded to Kennah-Hafstein’s campaign by agreeing to increase the OR time of the surgeon who does DBS by one surgery every other week – nearly a doubling of his current time – she says the increase has not yet taken place.

Though the increase will likely be too late for her, it will help others. She expresses her gratitude – via text – for the support for her letter-writing campaign.

“I would like to thank everyone, particularly the Observer, and everyone who wrote a letter. It proves we can have an impact on what happens.”

Her sister recently wrote to B.C. Health Minister Adrian Dix.

“It has been a very eye-opening journey for our family to realize that such a life altering procedure, which is approved and recommended as the treatment of choice for her condition, is in reality not available because of lack of funding (or lack of political will for funding)… Even at this late stage in the game we are still hoping for a miracle, we are still hoping that we will get word that funding has come through to open another surgical suite in BC for DBS surgery…, to hire another neurosurgeon, to move the waitlist more quickly, even at this late stage we are still holding out hope that our sister’s surgery can be done on time (within two months) in Canada, in your province.”

Related: Health minister offers no remedy for surgical wait time

Although having agreed to increase the OR time for DBS, Dix’s office also told Kennah-Hafstein that adding another neurosurgeon is not an immediate solution because it could require additional clinical staff such as “specialists, neurophysiologists, specialty nurses and non-clinical staff with the expertise and responsibility for planning and coordinating ideal care for patients.”

Dix’s rep said Fraser Health is giving “serious consideration” to adding DBS to its services, and the ministry will continue to develop such resources.

Jean Blake, CEO of the Parkinson Society BC, points out that the wait time for DBS in B.C. after referral is three years, compared to six to 18 months in other provinces. She says a year wait “may be devastating for a patient, condemning them to a life of disability with flailing limbs, debilitating tremors and/or inability to move, work or lead a normal life.”

Kennah-Hafstein emphasizes her deep gratitude for people’s support. Anyone who would like to contribute cash or a cheque should email her at ihafstein@gmail.com, do an e-transfer, or donate via the GoFundMe account. A silent auction is planned for the end of the month, so if you would like to donate an item, please send her an email.


@SalmonArm
marthawickett@saobserver.net

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