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Murray happy to have life, career back

by Mike Morreale / Edmonton Oilers
Rem Murray was diagnosed with a rare brain disease called cervical dystonia during the 2003-2004 season. Murray playoff prediction blog

There was Rem Murray, a veteran of 11 NHL seasons, completely awestruck at the sights and sounds of the game that were once so trivial to him.

'I couldn't put it into words,' Murray told 'I was listening to the crowd and taking in as much of the atmosphere as I could. When I was on the ice I focused on the game, but everything in my life to that point was a bonus and, really, a dream come true.'

That was 2006, when Murray was playing for the Edmonton Oilers in the Stanley Cup Playoffs. This despite the fact his career appeared to have ended two years earlier after he had been diagnosed with a rare brain disease – cervical dystonia.

It was in 2003-04 when Murray, then with the Nashville Predators, realized something was seriously wrong.

'I started getting tremors after a practice or a game and, at first, thought it was just the intensity with which I played, so I didn't consider it a big deal,' Murray said. 'But then it started happening more and more, even when I was just sitting around. The thing is, it's not a shoulder or knee, it was just a constant shaking and that's something you normally associate with an elderly person and not with an athlete, so it was embarrassing. It worsened to the point where my head started turning to the left, uncontrollably, and it was really effecting the way I played.'

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It was during a live television interview between periods of a game in Detroit when Murray's disease became public. It had reached a point where the forward, then 31, couldn't look directly into the camera since his head was pulling to the left.

'I knew at that point everybody was going to know, so I told our trainer,' Murray said.

He traveled with the team to Toronto the following day and met with one of the world's leading neurologists, who diagnosed the disease as cervical dystonia. Because there are no blood tests that can detect CD, doctors must recognize the physical features of the illness, which include involuntary spasms of the neck muscles that cause twisting, repetitive movements or abnormal postures of the head. It's the third-most common movement disorder, after Parkinson's disease and tremors, affecting approximately 125,000 people in the United States.

'Once the doctor diagnosed the problem, I was willing to do anything at that point to ease the pain,' Murray said. 'Not only was my head turning to the left, but I was stuck looking over my left shoulder. It's like waking up with a stiff neck, times 100. I couldn't do everyday activities like drive a car, read a newspaper or pour a bowl of cereal. The only time I felt somewhat comfortable was when I was able to lie down. I was so frustrated, I wanted to put my head through a wall.'

With the assistance of his neurologist and osteopath, Murray was treated with BOTOX (Botulinum Toxin Type A) and a rigorous physical therapy program. In 1989, BOTOX was approved by the U.S. Food and Drug Administration for the treatment of certain debilitating medical conditions. Adults, in fact, have used BOTOX to decrease the severity of abnormal head position and neck pain associated with CD since 2000.

'I took off an entire year from hockey and continued the BOTOX injections (into his front and back neck muscles) every three months,' Murray said. 'I still get tremors now and again, but they aren't as bad as they were. It never really got to a point where I said `Why me?' and once I got my quality of life back, anything else was a bonus.'

"I know the kind of impact this disease has and that it can put an end to one's dreams, but effective treatment is available. I just want to raise awareness and give hope to others who are living with the disease and suffering in silence." - Rem Murray
Once he began feeling better, Murray began skating with friends in a recreation league and got the itch to return to the game. He kept in close contact with Edmonton, where he spent seven seasons, and following a lot of hard work and dedication, was signed by the Oilers in March 2006. It was just in time for Edmonton's remarkable playoff run, which ended with a loss to the Carolina Hurricanes in Game 7 of the Stanley Cup Final.

'When I was diagnosed with CD, I thought my career was over,' Murray said. 'I know the kind of impact this disease has and that it can put an end to one's dreams, but effective treatment is available. I just want to raise awareness and give hope to others who are living with the disease and suffering in silence.'

As such, Allergan, the maker of BOTOX, is sponsoring the BOTOX Dreams campaign. It's an opportunity for those affected by CD to share their story and have a chance at a $10,000 grant for a favorite community-focused program of their choice, such as community libraries, senior centers or other service or charitable organizations. By sharing their stories publicly, patients will help raise awareness of CD, its impact on one's life and encourage earlier diagnosis and treatment.

Patients suffering from CD are asked to submit an essay describing their struggle with the condition and what treatment with BOTOX has meant during recovery. A panel of judges, including Murray, leading neurologists and representatives from patient advocacy organizations will select four CD patients, representing four U.S. regions. To obtain a grant entry form, visit Entries must be received by July 21.

Contact Mike Morreale at
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