PRECIOUS MOMENTS; SCLEROSIS SUFFERER AT PEACE WITH LIFE.

Byline: Angela M. Lemire Staff Writer

Over the last two years, Mike Johnson has learned a personal distinction between the meaning of being afraid and being scared.

``I'm afraid, but I'm not scared,'' said Johnson, as he sat in the wheelchair that three months ago became his source of mobility and will remain so for the rest of his life.

``I'm afraid to die and leave without being able to reach my goals and raise my daughter, teach her how to ride a bike or see her graduate,'' he said, his words slurred but deliberate. ``Scared is thinking about how you're going to die or when it's going to happen. But I'm not scared. I'm at peace.''

Johnson, 36, a longtime Valencia resident and recently retired city worker for Field Services, has Lou Gehrig's disease - also known as amyotrophic lateral sclerosis - an aggressive form of muscular dystrophy that ravages nerve cells and muscle tissue.

Those afflicted often succumb to cardiac arrest or respiratory failure, sometimes in as little as six months following their diagnosis, Johnson explained with the solemnness and clinical certainty that would come from reading countless articles on the subject.

``Most people have heard of Lou Gehrig's disease, but they really don't know how ugly it is,'' he said. ``I try not to think about it or ask, Why me? You have to take the positive and not dwell on it. Everyone has their bad days, but you try to make those few and far between.''

It has been more than two years since Johnson's diagnosis and several months since he began experiencing the latter, more debilitating stages of the disease.

Breathing has become more labored and difficult, especially at night.

Johnson knows it's a matter of time, perhaps another month or two, before he needs a breathing tube, and that a feeding tube will follow shortly thereafter.

``That's one thing I don't want to give up - that's eating,'' he said. ``I enjoy it too much.''

He hasn't been able to hold a fork, write or tie his own shoes for months.

He calls his mother, Karen, a ``Godsend'' for moving into his home last May to care for him. She feeds, bathes and clothes him, moves his wheelchair and takes her son to doctor appointments.

Losing his independence and relying on another person for so much has been one of the greatest mental and emotional challenges, he said.

Another tremendous adjustment has been leaving a physically active lifestyle behind, as his life had centered on competitive cycling, proper diet and conditioning for the last eight years.

The first symptoms appeared in December of 1997, when the forefinger on his right hand failed to straighten and he became increasingly fatigued.

``I thought I pinched a nerve at the gym,'' he said, recalling initial visits to the doctor. ``At first they said it was either a brain tumor or ALS. I was like, What? I'm in the best shape of my life. I'm cycling 300 to 400 miles a week.''

Within two months, tests confirmed the ALS diagnosis.

The last time he rode a bicycle outdoors was October of 1998.

``I kept falling down. It wasn't worth it anymore,'' he said.

Around that time, Johnson substituted his workout with ``spinning'' at a local gymnasium, now a popular group sport that combines group-led stationary bike workouts with pulsing music. He eventually replaced his street bike with his own spin bike to ride at home.

He sold the spin bike in August, but that was after he had fallen and broken three ribs in his home while trying to walk.

Mark House, a close friend, met Johnson through the local gym shortly after he was diagnosed in November of 1997.

``I didn't even know about his condition when I met him. We became instant friends because we were both single fathers with girls about the same age,'' House recalled. ``I remember he would work out on the bike for hours. I couldn't keep up with him.''

Johnson's last day of work was Oct. 1, although his duties had been reduced by physical scale from painting and setting concrete to more office work and performing visual inspections with colleagues.

``The city bent over backward for me,'' said Johnson. ``You don't see that in most work places. I finally left on my own. They would have kept me longer.''

City workers threw Johnson a barbecue on his last day of work, complete with a cake and plaque to wish him well. Since then co-workers have made frequent - if not daily - trips and phone calls to his home, he said.

His best friend and co-worker, Raoul Nevarro, is working with House to organize a 5-kilometer run/walk to help Johnson offset medical bills and daily living expenses that insurance companies refuse to cover. A tentative date has been set for Jan. 22 at an undetermined time and place, House said.

Support from friends, family and co-workers, as well as a renewed faith in God, have helped him achieve peace and an unwavering sense that ``everything will be all right,'' said Johnson, who was raised as a Roman Catholic with his brother and sister.

And his daughter Hannah, 5, gives him countless moments to cherish every time she bubbles with excitement over such things as Barbie or swim practice.

Hannah has made every day on Earth worth living, he said, noting that she often offers to help him and remains quite protective of him.

``The hard parts are knowing that I won't be able to teach her to ride her bike, or see her graduate,'' said Johnson, adding, ``But I've learned what family really means and that you don't put off to tomorrow what you can do today. And that means telling people you love them.''

HOW TO HELP

Mark House is seeking volunteers for a steering committee to help organize the Mike Johnson 5K Run/Walk in January. Portions of the proceeds will benefit a charity of Johnson's choice, as well as medical and living expenses. For information, call Mark House at [phone].

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Photo

PHOTO (color) Friends and family of Mike Johnson, who suffers from Lou Gehrig's disease, are organizing a 5K run to raise funds for his medical bills.

Hans Gutknecht/Staff Photographer

Box: How to Help (see text)