Tammy’s Take – Tammy W. Karatchuk

What Happened to Winnipeg’s Epilepsy Monitoring Unit – One Year Later and the Only Person to Benefit was Premier Stefanson

On May 10th, 2021, Manitoba’s Health and Seniors Care Minister pledged $4 million for a “state-of-the-art,” four bed “Enhanced Adult Epilepsy Monitoring Unit” at the Health Science Centre in Winnipeg.

That was one year ago.

Heather Stefanson said, “The expansion of the adult epilepsy monitoring unit at HSC Winnipeg is a pivotal step toward reducing the need for patients to leave their support network behind to receive care outside this province and toward decreasing costs for anti-epileptic medications – costs that can then be reinvested into providing care for Manitobans.”

Stefanson made neurological care sound akin to a warm and fluffy feather duvet. But it was a pilled blanket with holes. When it comes to neurological care, $4 million is a start. But an EMU has operating costs. Those state of the art beds need state of the art trained epilepsy nurses. The EEG nodules that map a patient’s brain alone are thousands of dollars.

There’s little doubt the pledge was made to appease an under count of 23,000 Manitobans living with seizures and epilepsy.

Six months after this pledge, Heather Stefanson was upgraded to premier of Manitoba. During the same time, the current adult EMU was graded as still closed.

Since Stefanson’s announcement, two neurosurgeons have left Manitoba. By the end of the year, two epileptologists are fleeing the province, which leaves Manitoba with two overwhelmed epileptologists responsible for hundreds of patients. Recently, the neurology clinic was moved to a smaller clinic at the Health Science Centre. Fitting, because the department is shrinking faster than Shrinky Dinks®.

After a wave of resignations from neurology in 2020, there are approximately 25 neurologists left Manitoba, a province of 1.3 million people. Besides seizures, neurologists diagnose and monitor patients with multiple scoliosis, brain tumours, lupus, fibromyalgia, and other neurological diseases.

Stefanson’s defence could be, “I wasn’t premier at the time,” throwing her predecessor Brian Pallister under the bus. Or “We’re in a pandemic,” or she’ll pass the concern to current Health Minister, Audrey Gordon. While Gordon is the new minister, Stefanson made the pledge.

When 30 Years Seems Like Yesterday – The Chronicles and Confessions of a Brain Tumour Survivor

“Sept 16, 1991, Monday

Dear Diary

The nerologist, Mr. Young, told me that I have a brain tumor. It’s the size of a nickle. They’re sending me for more tests this week … I’m kind of still in shock. I never expected this. I expected epilepsy or, may be nothing. Jenn took it hard. I did to, eventually. I was so scared at first that I was, or am going to die. Surgery sounds scary!, but the tumor is low grade.”

You can tell my diary didn’t include spellcheck or Grammarly.

Today is the 30th anniversary of my first brain surgery, October 18, 1991.

I was 15 years old. Barely two weeks into grade 10. Looking forward to figure skating and entering my intermediate/pre-novice year. Taking driver’s ed. Getting my driver’s license. However, that changed overnight in mid-September after a seizure and a subsequent brain tumour diagnosis.

My mistake was pretending to be okay after that first diagnosis. Too often a child tries to be strong for their family and friends. We don’t want them to be sad, worried, feel more stress, deal with our pain, and so forth. With me, I felt like a burden because my parents needed someone to milk the cows, look after my four-year-old sister, find somewhere to stay in Winnipeg. The last thing they needed was a child rocking back and forth in a corner and blasting Metallica on their Walkman. I was more of a bubblegum pop girl, but still.

But I chose to pretend I was fine. I chose not to cry in front of my parents and friends. A couple of teachers wanted to start a support group for me. I chose to say no. The only time some of my friends saw me cry was my last day of school. We were on the bus, and one of my best friends was being dropped off. She hugged me and I could see her crying as she left the bus. I broke down. My other friends were saying, “You’ve been so strong, you need to cry,” and “Not many people would be able to handle this like you have.”

If they could’ve read my diary entries, they’d see I was stuffing my emotions.

My diary should’ve been about landing my double loop (alas) and worrying about exam exemptions. Instead it was, “I’m really nerseous inside, but if I act happy, no one knows.” My best speller certificate from grade three probably just burst into flames.

When You Sell a House, You Keep the Memories

This image has an empty alt attribute; its file name is pxl_20210919_212239063_3.jpg — *Saying goodbye*

My parents built their dream house.

A smaller home in the woods. Surrounded by trails and bulrushes – and black bears.

Which means they sold their house and acreage on Highway 68. The acreage even had its own business name, “Karatchuk Acres.”

On September 30th, mom and dad went to their former home. One last time before the new owners took possession. They walked around the yards, reminiscing, taking photos. Sending selfies with, “Saying goodbye.” When my dad was ten months old, he moved to that acreage. My mom, since she was seventeen, and the three of us girls since birth.

Everything went with the sale. The front garden, flowerbeds, the apple trees. Sheds, garages, and silos. The red-weathered barn at the end of the driveway.

*The middle portion is the the original house, seen above.*
We moved into the rear bi-level bedrooms on New Year’s Day, 1988.
The front sunroom was completed in 2013. It replaced the brown south-facing deck and the main entrance,

With the sale also went a huge west yard where my first childhood home stood. In 1985, my parents sold our 600 sq.ft. house and we relocated to my late paternal grandparents house on the same acreage. The little house was lifted from the foundation, set onto a moving trailer, and transported to Eriksdale, Manitoba and its new owners.

But this is different.

When I visit my parents, I’ll see my second house and the acreage. My preteen and cusp of adulthood home. But from the outside – and afar.

My Last Real Doughnut: The Celiac Realization

In 2010, I had my last real doughnut.

It was an éclair from the Arborg Bakery when my friends and I were in town for a college project. I told them, “Before we leave, we have to stop at the bakery!”

While my friends cooed in doughnut heaven, I drove back to Red River College, scratching my itchy burning hands as they bubbled like pop rocks.

I couldn’t accept the obvious: I was Celiac.

When one of my aunts was diagnosed in the late 1990s, few people understood Celiac disease. In a nutshell – no gluten. Barley, malt, malt flavour, brewer’s yeast, dextrin. And more! Celiac is an autoimmune disease, and it runs on its own timeline – and it’s often hereditary. Stress or an overload of gluten can mess with your gluten filled life. After years of yummy puffy homemade bread, a body can revolt.

It’s Time to Rename “Fad Diets” as “Treatments” – You’re Not on the Real Keto Diet

Meet the keto diet.

However, in the epilepsy community, it’s known as the ketogenic diet and it can be traced back to the 1920s and 1930s.

But, hey, someone said they lost 120 lbs on keto. So, toot, toot! All aboard the temporary weight loss train!

The ketogenic diet is not a diet. It’s a treatment for children and teens with uncontrolled (refractory) epilepsy. In 1994, it gained mainstream attention as a seizure control treatment when a young boy with refractory epilepsy was kept seizure free thanks to the ketogenic diet. I live with epilepsy, and I learned about the treatment as a teenager.

Losing Grandparents Doesn’t Become Simpler with Age

My Gigi Karatchuk died on December 2, 1984 when he was 67 years old, and Baba died at the same age on October 12, 1982. Pictured are my older sister (brown overalls) and me (sucking thumb) with my paternal grandparents, 1980

“Grandparents are only with us part-time.”

That was the gist of a late-80s MTS commercial.

If grandchildren are fortunate, we’ll have memories of our grandparents – even if we lost them at a young age. However, if our grandparents are still with us in our teen years, or our 20s, 30s, or 40s – we start to believe they are invincible.

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