About 17 months after Deep Brain Stimulation (DBS) for Parkinson’s disease, Salmon Arm’s Maureen Kennah-Hafstein remains grateful she was finally able to access the treatment.
Sleeping has been good and those unbearable, uncontrollable movements are immensely better, she said, adding that DBS has delivered 100 per cent what it promised.
Because DBS is available to those people with Parkinson’s whose symptoms can’t be adequately managed with medication, she thinks she would be bedridden without it.
“It’s buying me some time, some sense of normalcy. It’s not perfect, but it’s certainly a reprieve.”
Before the surgery she was taking 36 pills per day. Right after the operation, that number dropped to six. Now she takes 18.
She said her challenge is to balance the amount of medication with the stimulation from the two electrodes in her brain. She can increase and reduce that stimulation by pressing a button, much like adjusting the volume on a cellphone.
Kennah-Haftstein was diagnosed with Parkinson’s in 2007. Being bedridden is stage five of the disease, she said, and she estimates she’s at the beginning of stage four.
“The reality is, those symptoms are going to come back. The Parkinson’s train keeps rolling…”
She joined the wait list for surgery in July 2017 and underwent surgery more than two years later, on Sept. 17, 2019. In 2017 she began lobbying for ways to reduce the wait times for people who were forced to linger on the list, some for nearly two years. She continued to push for a second operating room in B.C. as well as a second neurosurgeon trained in the procedure.
The urgency for the surgery is tied to its window of effectiveness. As a person’s symptoms become more severe, the chance of restoring earlier capabilities becomes less.
Changes to the provincial wait list have been a partial success for Kennah-Hafstein.
An email to the Observer from the Ministry of Health on Feb. 1 stated that recruiting a neurosurgeon for the procedure is still ongoing.
However, new equipment added in June 2019 has allowed the current neurosurgeon to perform double the surgeries.
The ministry stated that in 2019/20 a total of 78 surgeries were completed, compared to 38 in 2016/17.
Average wait times in 2020/21 (as of Jan. 7, 2021) were more than halved: 17.9 weeks compared to 41.3 weeks for the same period in 2019/20.
Two unexpected results of DBS for Kennah-Hafstein have been apathy and depression.
“I thought I knew everything, but there’s always something to learn. Luckily, there is fabulous medication for depression. I’m on a very mild anti-depressant. I still feel the apathy isn’t gone and I’m not sure if it would ever go away.
“I get little bursts of enthusiasm,” she added.
Despite that, she still expresses gratitude, a viewpoint she’s maintained throughout her time with the disease.
She continues to box three times a week on Zoom with her Movers and Shakers group at Bulldogs Boxing.
She’s also been dedicated to educating others about the disease, still the teacher she is trained to be.
“I had that huge urge to tell people about it. That’s what I mean about using what comes your way.”
She emphasized she has nothing to complain about.
“I have a disease that’s going to progress, but that never stops me from trying to get what I can out of it. That’s who I am.
I get the best out of life I can.”
With a smile, Kennah-Hafstein repeats a phrase she often uses when speaking of her gratitude.
“It’s never so bad it couldn’t be worse.”