The Forks to light canopy teal for 'suicide disease' awareness after calls from sufferer

The Forks will light the canopy teal over the market plaza-skating rink area, between Johnston Terminal and The Forks Market on Wednesday to mark Trigeminal Neuralgia Awareness Day. The move comes in response to a request made by Steinbach's Patty Penner.

The 53-year-old woman has trigeminal neuralgia (TN), a rare neurological disease. The pain it causes is so extreme TN is nick-named the "suicide disease." The slightest touch or breeze sends extreme pain through portions of Penner's face.

Her symptoms began suddenly and seemingly at random, about three and a half years ago. Penner was working as an educational assistant when a "lightning bolt" of pain in her face made her gasp it was so severe.

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"I got up, ran to the bathroom expecting to see get there and see huge quantities of blood," she said, "and there was nothing there but a little twitch on my chin."

She googled her symptoms and TN came up. At first she disregarded the result, thinking TN sounded too serious. But sure enough, it turned out to be her diagnosis. People can get trigeminal neuralgia at any age, she said.

"It can come from MS, it can come from a tumour compressing a nerve," she said, "or it can come from arteries or blood veins that compress the nerve." Penner's condition was caused by small amounts of blood pressure compressing her nerve. Every heartbeat can further damage the area and her condition may worsen overtime.

"Different things trigger (the pain)," she said, "wind triggers it, vibration, noise, touching your face certainly can, but it's not like it's instantaneous, there's a slight delay."

Tomorrow will be kinder, that's my motto...You have to hope for a better day.- Patty Penner

Penner is quick to say she has known pain. She gave birth to her children naturally but no pain compares to trigeminal neuralgia, she said. Even heavy-duty painkillers like morphine do nothing to alleviate her symptoms. The only medication that "takes the edge off" is a muscle relaxant and anti-seizure medications, she said.

"I've known pain, I'm not a wimp," Penner said, "this rocked me." 

One of the few permanent treatments available for Penner's illness is brain surgery. She underwent an operation in Winnipeg but the surgery failed to improve the trigeminal neuralgia and complications left her with vertigo. She is now researching the possibility of an experimental treatment using artificial neurotransmitters to block pain.

Penner hopes support group will help

In the mean time, Penner hopes her story will help others with her condition unite together and form a support group for Winnipeg and south-eastern Manitoba. About one in 15,000 or 20,000 people have trigeminal neuralgia.

"Sometimes you just need to sit with somebody who knows exactly what you're experiencing," she said, "You don't want pity, you want understanding."