Charlie Wedemeyer, former Los Gatos Excessive soccer coach with ALS, dies – East Bay Instances

About five minutes after I moved to San Jose in 1984, someone told me about Charlie Wedemeyer.

“He’s the most amazing guy you’ll ever meet,” the person told me.

I met him. He was. And he ranked No. 1 in that category until his death Thursday morning at age 64 of complications from pneumonia. Services are tentatively scheduled for June 19 in Los Gatos.

There are so many great Charlie Wedemeyer stories. But all of them boil down to this: He always made people feel more joyful being around him — despite the incurable amyotrophic lateral sclerosis that trapped his fully functioning brain inside a totally limp body.

Pity? Forget about it. Charlie didn’t diplomatically recognize the word.

It must have been awful in 1978, when as a healthy 32-year-old high school football coach, Charlie was told he had ALS — often known as Lou Gehrig’s disease. I’m sure there were tears between Charlie and his wife, Lucy. But somewhere along the way, they decided that Charlie was going to persevere — and the family would help him do so. No matter what.

How did the Wedemeyers deal with it, 24 hours a day, every day and night, for the past 32 years? I can’t imagine. But it was quite a ride — literally, in Charlie’s specially equipped wheelchair. I remember how the San Francisco Giants once invited him to “throw out” the first pitch at a home game. His family rolled out Charlie to the pitchers’ mound.

There, Charlie’s eyes beckoned to Lucy. She always read his lips and interpreted his words.

And what, exactly, did Charlie say this time?

“He asked me to take the first two fingers on his right hand and hold them to his mouth,” Lucy recalled later. “He wanted to wet the fingers and throw a spitter.”

She did, then threw the pitch.

That’s just one example of how the Wedemeyers made their lives seem more fun than it surely was. By 1983, the disease had taken its toll and Charlie couldn’t speak. But the Wedemeyers worked out an arrangement with Los Gatos High so that Charlie could coach the team from a golf cart and relay the play calls through Lucy to the field.

The unique method worked, with the cooperation of his assistant coaches. Los Gatos won a sectional championship. The victory served as the climax of a television movie made about Charlie’s life.

Everybody at the school thought that was pretty darn neat. After the diagnosis, the Los Gatos principal told Wedemeyer he could stay as head coach as long as he wished — until 1986, when the principal changed his mind and gave the job to one of Charlie’s assistants. Apparently, Charlie had stayed around longer than the principal expected.

“I am disappointed,” Charlie told me through Lucy when I went to talk with them about the situation. “But there is no anger or bitterness. You have to accept it, grow with it and move on.”

This still didn’t prevent Charlie from impishly suggesting that he was going to attend Los Gatos home games wearing a Nike headband on which someone had printed the following words: EXCUSE ME FOR LIVING.

According to the ALS Association, the disease strikes about 5,600 people each year in the United States. About 20 percent live five years. Maybe 5 percent live 20 years.

Year after year, Charlie kept living, in remarkable ways. He traveled to Europe to give “speeches” and express his faith in God. He helped organize a scholarship dinner for worthy local students who he said were “inspirational” to him. He “cooked” by directing his family through recipes, even though he could taste the food only briefly before it had to be removed from his mouth. He couldn’t swallow. He was fed through a stomach tube. He breathed through a tracheotomy hooked up to a respirator.

To make this lifestyle work, Charlie’s family members had to learn complicated medical techniques. They did. Of course they did.

The most fun I had with the guy, though, was when we could just “talk” football. When Charlie attended games, he sat in the end zone so he could see blocking schemes. He had strong opinions. He loved Duffy Daugherty, who had been Charlie’s college coach at Michigan State.

He hated instant replay.

“They should just play the game,” Charlie told me.

I never saw anyone battle harder, without moving a muscle. Even in his last few days, as Wedemeyer entered the final throes of his guerrilla war against ALS, he and his family were confounding the physicians. Doctors always wanted Charlie to behave like a “normal” ALS patient and die gently after the good fight.

Wedemeyer was never going to cooperate. At least with the “die” part. The “good fight” part lasted about 30 years longer than anyone thought. And the word “good” hardly begins to do it justice.

Contact Mark Purdy at mpurdy@mercurynews.com or 408-920-5092.