‘I can’t move’: Ontario woman opens up about stiff person syndrome fight

An "episode at work" is how Robyn Cook describes the sudden and life-changing full-body spasm that sent her to the emergency room,.

An “episode at work” is how Robyn Cook describes the sudden and life-changing full-body spasm that sent her to the emergency room, five years before a mysterious set of symptoms would be diagnosed as stiff person syndrome.

“I couldn’t open my mouth because my jaw was spasming,” she said of the frightening experience in 2012 that prevented her from calling for help from her desk at a bank.

“My left arm was stuck to me and my body was spasming from the neck, the shoulder, the torso, trunk, even into the hips,” Cook said from North Bay, Ont.

Cook, now 46, says signs of the neurological autoimmune disease began when she was 23. Her back stiffened with pain that took her to the floor and a similar debilitating incident eight years later forced her to stop working for five months.

“These episodes kept happening where it’s like, ‘Oh, my back went out. I’m stuck. I can’t move. I’m hitting the floor and crawling back to bed. But nobody could say anything was wrong with me.”

Cook ended up in the ER about 25 times, each time fearing she’d be perceived as a pill-seeker concocting her symptoms because the illness was little-known in Canada and had no advocacy group to support patients.

“It was the feeling of not being believed because you are the frequent flyer,” she said.

Symptoms worsened after the 2012 episode at work and Cook increasingly felt isolated. She worried about falling and began using a cane with a four-prong base at home in 2015. The following year she became dependent on a wheelchair whenever she left the house.