Regina man living with Stiff Person Syndrome hopes Celine Dion's diagnosis shines light on condition

John Shivak of Regina has been living with Stiff Person Syndrome (SPS) for 30 years and hopes Celine Dion’s announcement of her diagnosis shines more light on the disease.

“Celine Dion, opening herself up to the world, now the world knows, ‘Gee, that guy isn’t faking,” Shivak said.

On Thursday, the Canadian phenom announced she was postponing her world tour, revealing she suffers from the disorder.

Also called Moersch-Woltman syndrome, SPS is a rare neurological condition that gives people painful muscle spasms. (link article)

Shivak, who was diagnosed in the 90’s, said he hopes this propels someone in the neurological sphere to take interest in this disease.

“Her name sent by a neurologist to a research lab would mean a hell of a lot more than John Shivak’s name attached to the letter.”

According to experts, SPS mimics features of autoimmune diseases, though what triggers it is still a mystery.

“So the exact cause is unknown, however it’s recognized that this is an autoimmune condition where the immune system gets revved up, gets angry and happens to target the nervous system,” said Scott Newsome, a doctor at Johns Hopkins in Baltimore.

Shivak has another way to explain it.

“It’s like you’re running a marathon for 24 hours a day and your body plays out…simple as that.”

He said his typical day is normal until about 2 p.m., when he heads to bed to take a nap.

While it took a while to get diagnosed, Shivak knew there was a reason to him feeling so tired by the mid afternoons.

“We got so frustrated because you know there’s something wrong with you,” he explained. His doctor, Dr. Moodly, tried many tests including one for Parkinson's, but still came up empty handed.

Eventually he consulted with another physician, who was on the verge of retirement at that time.

“The definitive test where they would put electrodes, several all over your body, and then hook you up to a computer and measure the electrical flow,” Shivak told CTV.

He said the sound coming from the computer was like radio static, just a constant buzzing. His wife, Marilyn, said the chart was a jumble of peaks and valleys.

So the doctor administered valium.

“I don’t know what dosage he used but the valium doesn’t take long, and right away, the noise, that static that I heard, went down to just a hiss.”

Shivak also applied to be part of a study at the National Institute of Health near Washington D.C. that was looking for another way to detect SPS.

He was one of 20 participants, with one other woman from Regina also involved.

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The study was looking for 40 participants, but since it is such a rare condition, only 20 were eligible.

Shivak explained that while there was no cure, the valium seemed to be the documented treatment.

He recalled a time where he fell in the snow, and he just could not get his muscles to relax enough in order to help him up. So he remembered what he taught his children, to roll. He then rolled to a tree and pulled himself up.

His wife added that he wears an alert watch, because this event could, and does, happen to the body without warning.

Newsome explained that this disease is supposedly one or two in a million people, and because it is so rare, there is not a lot of information, or early diagnosis around it.

“It goes undiagnosed for many years because of the lack of awareness.”

Shivak told CTV that his friend from the city passed away after complications in hospital from the muscles in her throat closing.

He explained that any cough, or food getting stuck, could be fatal, since like the rest of his muscles, the throat cannot relax.

While he has had the disease for a while, he is still able to move, and walk, and tell a wonderful story or two, which he has an arsenal of.

But for Shivak at 79-years-old, he has been living with it since he was 50, and has come to terms with his condition.

“I learnt a few new swear words… you kind of have to learn to accept it, there’s nothing you can do.”