Susman, Ed

Ed Susman is a health and science journalist who contributes to WebMD, United Press International and other medical wire services.

<>Clay Walker took the pick in his right hand and started to strum his guitar as he warmed up backstage for his concert. The pick fell to the floor. He retrieved it and tried to play. Again it fell out of his hand. I'd drop the pick every time I went to strum, he recalls. I couldn't hold it with my two fingers, because I could not feel it.

Confused and concerned, Walker nevertheless took the stage that night to entertain thousands of fans - strumming the guitar with his fingers rather than a pick and trying not to fall as he had several times earlier in a basketball game with his band. I'm very active on stage, moving around a lot, dancing, having a good time, he says. But that night in the Seattle Dome, I could only stand still. I was afraid if I took a step, I'd fall over.

Just 26 years old then, Walker was on top of the world as well as the country charts. He had a 3-month-old daughter. He had a loving wife. He had a rising career as a singing sensation. He had it all.

He also had numbness, double vision, weakness on the right side of his body - and worsening symptoms. I got home and the facial spasms started from the top of my head to the bottom of my chin, and it lasted for eight weeks, 24-7, he recalls. I rubbed my eyes so much I developed blisters on them. I couldn't see out of my right eye as the blisters grew. My wife finally called a neurosurgeon and made an appointment. I said, 'Why?' She said, 'Because there's something wrong with you. This spasm is going on in the middle of the night, and I'm concerned you may have a tumor.'

It wasn't a tumor - it was multiple sclerosis (MS). I didn't know what MS was, he says. I thought it was worse than it was. Hearing the words, 'You have MS,' is like someone telling you, 'You have cancer.'

And worse: The neurosurgeon, who was neither a neurologist nor an MS specialist, told him he'd be dead within eight years.

Ten years after that death sentence, Clay Walker is still going strong as one of country music's top headliners.

He's had 11 platinum records. He's had 11 Number One singles. He's been churning out a hit CD per year since 1993, selling more than eight million albums. And he performs his dynamic stage show 200 nights each year, playing to sellout crowds that exceed 60,000 and placing among the Top Ten country acts in box office gross.

For all his accomplishments, though, his music career was hardly a concern that day he was diagnosed.

My only negative reaction when I found out I had multiple sclerosis was that I might not be able to walk my daughter down the aisle, says Walker, who now has two young daughters to inspire him. Being able to do that is very important to me. I think of that quite often, and that is my goal.

Warming up for yet another concert a decade later, this time at the American Academy of Neurology Foundation's 2005 Gala, Walker eagerly discusses the disease that's always just offstage in his life. I appreciate every show more than I used to, he says, because I know it could all be taken from me.

Preparing to take the stage in Miami, he smiles easily from beneath his black cowboy hat because it's been fully five years and a thousand concerts since his last MS attack. He still has weakness in his right leg, but it's noticeable only to neurologists and only after extreme exercise and fatigue.

<>His stressful career - songwriting, recording, touring, performing - would appear to raise the risk for frequent MS attacks. And indeed his stress level was never higher than when he was diagnosed with relapsing-remitting MS, the disease form with unpredictable relapses during which new symptoms appear or existing symptoms worsen. That was the most stressful week of my life, he says. There were tragedies in my family. My brother-in-law was killed in a violent motorcycle accident. There were a lot of things going on, a lot of career demands. I was not sleeping properly or eating properly and my body was like a piece of shoe leather. I was just worn out. At 26 years old, I felt like 50. Looking back, I'm sure the stress brought out the multiple sclerosis.

Now at 36, he works hard at managing stress to help manage his MS. I don't sweat the small stuff anymore, he says. It takes a lot to rock my world, and I can shut down if I feel like I'm getting really stressed out. It's self-discipline you learn from having this. Once you know you have your life, then nothing else really matters. Now I ask myself, 'Is this a life-or-death situation?' And if it's not, then I can get through it. MS has slowed me down, but my career is skyrocketing. It slowed me down to take things in.

Chief among those, of course, are his wife, Lori, and their two daughters. His family inspires him to treat the disease with medication, a healthy diet and an active lifestyle that ranges from horseback riding to running on the beach with his daughters. He considers that a responsibility, because it would be hurting your loved ones to know you're not doing everything you can. So not only does the needle-phobic star take a daily glatiramer acetate (Copaxone) injection, but his wife and his daughters actually give him the shot.

Turning his private struggle into a public fight against the disease three years ago, Walker formed a foundation called Band Against MS. Its mission is raising awareness about MS and raising money for research and programs. MS has been the biggest blessing of my life, he says. It's given me a true purpose - a chance to give people hope.

The same kind of hope and help he needed upon his 1996 diagnosis. Someone brought me literature on MS and the description was terrible, he recalls. After reading all these debilitating symptoms and what I had to look forward to with this chronic disease, I thought, 'Oh my gosh.' That's why it's so important to get a neurologist who's an MS specialist.

Since his diagnosis, he's had just one other MS attack. That was the one five years ago, when he felt more weakness in his right leg than usual and a subsequent magnetic resonance imaging (MRI) scan revealed bright spots indicating brain lesions associated with MS progression. And it has not kept him from continuing to lead his life and career without missing a beat.

My right hand that could not hold a guitar pick, or a fishing rod and reel, got stronger than my left hand - and I'm left-handed! he says, smiling. I smiled a long time after that. They say you can't regain strength, and yet I did.

Walker feels blessed to continue to be so healthy. And sometimes he'll actually feel guilty because I know not everyone diagnosed with MS is that lucky.

The people I admire the most are those who are debilitated the most from this disease and who continue to be wishful and hopeful we can find a cure, he says. It takes a lot to conquer this disease. I don't think conquering it means curing it - I think it means not letting it break your spirits. The spirit is what keeps us going, and I think the spirit is what we need to find a cure for this.

Sounds like the inspiration for another Clay Walker lyric.

For more information about MS, see RESOURCE CENTRAL on page 46.

http://www.neurologynow.com/pt/re/neuronow/fulltext.01222928-200602010-00008.htm;jsessionid=GjnGTyvYbL9gcSpHCbNhmxFFz25tlp2TxDnMsL3ppgmghq5jph8p!-1243080020!-949856145!8091!-1?&fullimage=true