Jordan — MS LifeLines^® Ambassador

MS LifeLines Ambassador Jordan isn't letting MS score.

It takes a certain type of person to be a hockey goalie: one who isn't afraid to face adversity, be it a 90 mph puck or a 6' 3" power forward. The goalie must be in top physical form and be one of the best technical skaters on the team. And when it comes to blocking a shot, any body part goes. So when Jordan, goalie for the Providence Bruins, got hit with a diagnosis of relapsing-remitting multiple sclerosis, he took it head on.

Jordan first noticed something wrong back in college in 2003. It was his junior year at Bowling Green University in Ohio. His team played hockey every Friday and Saturday night. When he awoke one Sunday, his left foot felt like it was asleep. "It felt like pins and needles the whole day, but I didn't pay too much attention to it."

His coach and teammates were concerned for him, but Jordan went about his normal routine. However, when he awoke the next morning, his entire body was numb from the neck down.

"THAT scared me; like something was seriously wrong," Jordan says. He immediately called his mother back home in Surrey, British Columbia, who told him to go to a hospital. At the hospital they ran a gamut of tests on him, from blood work and MRIs to spinal taps. Jordan's diagnosis came pretty quickly—he had relapsing-remitting MS.

Alone in the hospital, a good 40-hour drive away from home, Jordan tried to make sense of what he was just told. "I didn't know what MS was. I had heard of it before, but I didn't really know any details. I was in a state of disbelief." Jordan admits that he did not want to believe he had the disease. "I was in great shape, playing college hockey, and...everything changed overnight. I was feeling fine just the other day. I went around for about 2 months seeing different doctors, but they all told me the same thing. Finally, I had to accept it."

Jordan immediately thought of his hockey career. He had been playing since he was a young boy. His older brother used to play hockey and Jordan had followed in his footsteps. Would he be able to continue playing? Answers were mixed. "Some doctors told me I wouldn't be able to play [with MS] and some said 'Maybe you can.' It was really frustrating because this disease is different for everyone and no one could tell me anything. That was the hardest part for me."

One thing the doctors all agreed on was having Jordan start treatment right away. Jordan started taking Rebif^® (interferon beta-1a) almost immediately. He also modified his diet, cutting out junk food that "would bring my energy level down." He found out very quickly what actions affected his health positively and negatively. "It took a couple of months to learn from my body, and how my body and the disease were going to work together."

Wearing heavy goalie equipment and playing could easily cause anyone to overheat. His doctors were concerned about that aspect of playing such a rigorous sport. Jordan learned a few techniques to keep his body cool while he was playing. "I put ice on my head and my neck in between periods, and pour ice water down my back. Little things like that help me."

Having a strong family unit also helps. "My family has always been there for me. On the day I was diagnosed, my mom was on the red-eye that night and was there the next morning for me." Jordan's younger brother was also there, attending college with him. "Having Jonathan around, playing with me, and helping me when I'm having a bad day, is great—he picks me up and puts me back on my feet." Jordan's family also helps him in other ways.

"They call and remind me to take my Rebif injections. Just a quick talk on the phone reminds me that they are taking care of me."

Jordan continued to play hockey, keeping his MS between his family and his coaches exclusively. Going public with his MS was something Jordan was anxious about. He was drafted by the Boston Bruins the year before (he currently plays for their farm team, the Providence Bruins), and was worried that his diagnosis might be held against him. "I just needed to know that I could play with this disease." When Jordan returned to college for his senior year he proved to himself that he could do just that, missing just one game the entire season.

"Once I knew I could play, that's when I decided it would be a good time to tell everybody. And it's probably the best thing I could have done."

Jordan received support "from everyone," including the Boston Bruins. "I got e-mails and letters every day, just lifting my spirits up." The outpouring of encouragement and well wishes gave Jordan the boost he needed to network with other people with MS. "Before, I only talked to my family, who were great, but they didn't know what I was actually going through. Going public made it a lot easier for me."

Raising public awareness of MS is something Jordan holds close to his heart. It started with a fund-raiser in his hometown. He and his family organized a hockey game and dinner auction that raised over $40,000. During his senior year at Bowling Green, he organized another fund-raiser that raised over $20,000. And this April, Jordan teamed up with EMD Serono and the Providence Bruins for "Sigalet Saves for MS." For every save Jordan made in the month of April, EMD Serono donated $20 to the National Multiple Sclerosis Society (NMSS) Rhode Island chapter. Jordan made 109 saves and presented a check to the NMSS for $2,180. As of March 2007, EMD Serono has donated over $10,000 in the Sigalet Saves for MS campaign. "If I can turn something bad into something good, and it helps one person, then that's what I want to try to do."

So what's next for Jordan? He's headed to Philadelphia to start goalie training with his coach. "You know, there really isn't any off-season anymore. You've got to do a lot of stuff in the summer if you want to be ready." He'll be pretty busy this fall too. "Actually, I just signed another contract with the Boston Bruins a couple of days ago. I'm going to the Bruins training camp in Boston the second week of September."

With a schedule like that, it's easy to see the goalie in Jordan. Nothing, not even MS, is getting past him.

This story reflects the personal experience of one person, and others can be different. Results and experiences vary from patient to patient. It is best to contact your doctor to discuss what's best for you. Jordan is an MS LifeLines Ambassador, and he has chosen to share his story with other people living with MS.