‘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, five years before a mysterious set of symptoms would be diagnosed as

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.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.

“Some people are free of symptoms and medications and for others the disease has come back again, but not as severe and it’s easier to treat,” he said.Atkins, a stem cell transplant physician, said he does not know of any neurologist in Canada who specializes in stiff person syndrome. The transplant procedure is reserved for “the very few people who have severe enough symptoms and no response to other treatments.

In a release issued last week by the University of Colorado Anschutz Medical Campus, Piquet said the cash will expand research to diagnose the disease earlier for those who “end up on this diagnostic odyssey.”

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