The mystery of ALS
PROGRESS IN FIGHTING DISEASE HAS BEEN SLOW
By David Kiefer
Mercury News
Article Launched: 12/02/2007 02:33:15 AM PST



Charlie Wedemeyer has lived with amyotrophic lateral sclerosis for three decades, defying his doctor's prediction in 1977 that the coach would live only another two to three years.

Yet ALS still is considered fatal and incurable, and it has no known cause.

The degenerative affliction, also known as Lou Gehrig's disease, is a progressive weakening of the muscles caused by nerve degeneration. Early symptoms include weakness in the arms or legs, slurred speech and difficulty chewing and swallowing. Slowly, the muscles stop responding, even those needed to eat and breathe.

The disease does not affect the heart, but it does attack the respiratory system. ALS patients often die of pneumonia.

"It's a disease of loss," said Linda de Mello, executive director of the Greater Bay Area chapter of the ALS Association. "They're constantly losing things that we consider essential to the quality of our lives."

The disease usually is diagnosed about two years after symptoms begin, and 50 percent of patients die within three to five years of diagnosis. Twenty percent live five years or more; up to 10 percent will live more than 10 years.

About 30,000 Americans suffer from ALS at any one time.

Progress in fighting the disease has been slow. There are more than 15 strains of ALS, and the starting point for researchers - identifying mutations that cause it - has been found in only one strain.

Lucie Bruijn, science director and vice president


of the ALS Association, said she is convinced that breakthrough drugs will be created over the next decade to dramatically slow the progression of the disease. The ALS Association has spent more than $40 million on research grants, and recently partnered with two biotech companies on a stem-cell research project.
While the affects of the disease have already taken their toll on Wedemeyer, by now there is no reason to believe he can't have a normal lifespan. His biggest concern is the diminishing range of motion in his face, which he uses for communication.

Because Wedemeyer has a slow-growing strain of ALS, there was time to figure out ways to stabilize his health - often through seat-of-the-pants improvisation - and allow the family to develop a strong support system.

"It takes a community to support an ALS patient," de Mello said.

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Silent strength
By David Kiefer|Mercury News

Article Launched: 12/02/2007 02:32:46 AM PST


Click photo to enlarge
Former Los Gatos H.S. football coach Charlie Wedemeyer gets help from his son,... ( Patrick Tehan )«12» Charlie Wedemeyer is supposed to be dead. By any logic, he should have died long ago, before coaching Los Gatos High to a football championship, before celebrating his 61st birthday, before meeting his four grandchildren or having an all-star game named in his honor. People with amyotrophic lateral sclerosis, a degenerative condition known as Lou Gehrig's disease, just don't live this long. They waste away, then go away. Quietly, privately.
Of the 5,600 Americans diagnosed with ALS each year, 50 percent die within five years. Only 10 percent live longer than a decade.

But 30 years after his diagnosis, Wedemeyer is still here. His story is different, thanks to an unshakable Christian faith and a fighter for a wife.

In 1984, during an especially difficult time, a tearful Wedemeyer told his wife, Lucy, "You and the children would be better off if I died."

Realizing the weight of the moment, Lucy measured her response carefully.

"We would rather have you like this, than not have you at all."

Then, in early 1985, Wedemeyer hovered between life and death. He could barely keep down even a spoonful of soup, and was losing weight fast.

Though not a deeply religious man, he allowed a nurse to place a hand on him and pray as he lay at home in bed. Within moments, he felt a surge of power and peace course through his body. His throat cleared and, for the first time in months, he drank bowls of soup without choking.

"It was an absolute
miracle," Lucy said. "It was as if someone was standing right next to him, saying, 'Just trust in me and everything will be OK.' "
Lucy noticed an amaryllis plant in a corner, a gift from an assistant coach. Its buds had been tightly closed. But after the prayer, she said, it was in full bloom.

Former Los Gatos H.S. football coach Charlie Wedemeyer gets a kiss from his... ( Patrick Tehan )


Unrelenting challenges

The high costs of care,

the lip-reading test

As the morning sunlight melts into the living room of the Wedemeyers' Los Gatos home, nurse Angela Palelei-Bustos wedges herself to the side of Wedemeyer's bed. Two new nurses stand just past the sheet-covered contour of Wedemeyer's bowed legs, listening closely as Palelei-Bustos begins another lesson on reading the silent coach's lips.

"Let's go over the four important words again," she said.

The nurses lean forward and stare intently at Wedemeyer.

As he forms the words, the nurses repeat in unison:

"Air."

"Trache."

"Bag."

"Mouth."

Wedemeyer smiles. The rookie nurses have passed the first test. They recognize the words that signal a potential crisis.

Other than a few facial movements, Wedemeyer can't move a muscle. He cannot eat, breathe or speak on his own. Hazards and dangers are everywhere, and he must be looked after every second, day and night.

As the new nurses continue their lesson, one seems to pick up the words with ease and stands back proudly. The other looks at Wedemeyer quizzically, scribbling notes in frantic fashion ("lips go up more on 'T'; teeth slide more on 'R' ") and squinting at his mouth as he tries again.

It's an exhausting process for nurses to learn, and it comes with a high attrition rate. Within weeks both nurses were let go because they couldn't master lip-reading, leaving the Wedemeyers to start the process over.

The Wedemeyers are in a constant battle with their medical provider to cover services. Ventilators, for example, cost $150 a month to rent but are not covered, even though Wedemeyer needs them to survive.

Each year, co-payments increase. Insurance once covered 16 hours a day of home care, but the Wedemeyers now struggle to maintain 11 or 12. Out of her own pocket Lucy pays for more than 80 hours per week of private nursing, at annual costs exceeding $100,000.

Lucy, 58, raises that money with tireless work as a real estate broker. Despite permanent back, shoulder and neck injuries caused by years of straining to lift her husband, she works up to 15 hours a day, seven days a week.

Through 41 years of marriage, Lucy has remained funny, upbeat, vivacious and strong, even if she privately struggled at times to cope.

"My hat is off to that woman," said Frank Griffin, the Los Gatos doctor who made the original ALS diagnosis. "You can take care of somebody for a week, but when it's 24 hours a day, seven days a week, 365 days a year . . . that gets to you."

She hasn't done it alone.

Daughter Carri Andry, 40, lives in Los Gatos and runs the Charlie Wedemeyer Family Outreach, which raises money for ALS families. Her husband, Keith, works with Lucy in their real estate business and oversees the hiring of Charlie's nurses.

Son Kale, 37, a former football star at Los Gatos and University of the Pacific, is a doctor at Stanford with a specialty in pain management. He was drawn into medicine by his father's affliction, and brings calm to any crisis involving his care.

Lucy is adamant that her sacrifice should in no way be compared to the enormity of Charlie's.

"You have this amazing athlete who lived and died by his sports," she said. "His whole ego and sense of accomplishment were all wrapped up by what he did on the field. And he was robbed of that."

For the 'ell of it

A joker who loves food

(if only the aroma)

"What happened to the 49ers, Charlie?" said Steve Allshouse, needling Wedemeyer after another Niners loss.

Allshouse, a building contractor, is a close family friend who once transformed Wedemeyer's bed into a covered wagon - complete with spoked wheels, fringe and wooden horses leading the way - for grandson Koa's cowboy-themed fourth birthday party.

For a while anyway, the pulse of the ventilator was drowned out by the laughter of a child snuggled next to his grandfather, who was clad in a 10-gallon hat.

For the home of a "dying" man, there sure is a lot of laughter.

Wedemeyer's favorite joke: When a nervous new nurse carefully suctions his throat, he rolls his head to one side and contorts his face in agony. The nurse's shriek is quickly followed by the coach's grin.

If there's one thing Wedemeyer loves more than a good joke, it's good food. He watches the Food Network every day and memorizes recipes. When the mood strikes - sometimes in the middle of the night - he'll order his nurse into the kitchen and direct a recipe of his own. His specialties: Hawaiian teriyaki chicken, Korean barbecue, short ribs, turkey chili, meat loaf and chicken stir fry.

Because Wedemeyer cannot swallow, his meals - a concoction of liquid nutrition formula, juices, pureed fruit, herbs and vitamins - are siphoned through a rubber hose into a hole in his stomach.

Still, restaurant excursions remain one of his greatest pleasures. During one such visit to a small Chinese place in Los Gatos, Wedemeyer was struck by the aroma as the front door opened. But the moment was fleeting. He can smell, but he can't sniff, so once inside the restaurant he couldn't recapture the scent.

So he asked to enter again. Starting from the bottom of a ramp, and with his wheelchair pushed with a running start, an exuberant Wedemeyer flew through the entrance as the aroma rushed into his nostrils.

Things change

From athlete to teacher,

and then the diagnosis

Wedemeyer was a football, basketball and baseball star at Honolulu's Punahou School, where he met Lucy, a cheerleader. His athletic feats remain legendary on the islands, and friends discovered that if they're with Charlie in Hawaii, they won't have to pay for a meal.

"I've been around Hawaii athletics for most of my adult life," said Pal Eldredge, 62, a former Wedemeyer teammate and later a coach at Punahou. "And, to be honest, he is the greatest athlete I have ever seen."

Though Wedemeyer went on to play at Michigan State, where he was a standout end and earned selections to the 1969 East-West Shrine and Hula Bowl all-star games, he always pictured himself running his own hotel in Hawaii.

Those plans changed when Wedemeyer found himself drawn toward helping kids. He was teaching in Flint, Mich., when in 1970 he accepted an educational fellowship in San Jose, and a teaching and coaching job at Los Gatos two years later. He was named head coach in 1977.

In the fall of 1976, Wedemeyer began having trouble pressing the chalk against the blackboard as he taught math classes. Assuming it was the result of an old football injury, he said nothing. But as the months went by, he got worse, and the chalk began dropping to the floor.

Wedemeyer went to see Griffin, the Los Gatos team doctor and an orthopedic surgeon. When the test results came back in early 1977, Griffin didn't know how to break the news.

"It's a heavy burden," Griffin said. "You try like hell not to say 'ALS.' The thing is . . . this is a life sentence.

"I was the one who said, 'Probably two or three years.' That's what the medical books said at the time. Everyone who had the disease died in three years. Except for Charlie."

Wedemeyer's body deteriorated. He continued to coach, though he couldn't walk and could barely talk. Confined to a golf cart on the sideline, Charlie brought in Lucy as his voice and translator.

A Hollywood year

Off his death bed

to a football title

In July 1985, Wedemeyer nearly died.

For six days in the foothills behind Los Gatos, the Lexington Fire burned, and the smoke caused him to cough uncontrollably.

Already weakened by an inability to eat - and weighing less than 100 pounds - Wedemeyer stopped breathing three times, twice in a 48-hour span. Kale, then 15, saved him by sticking a catheter down his throat, clearing an airway and forcing him to gag and cough. He was revived twice more by home nurses.

Wedemeyer was rushed to Santa Teresa Community Hospital, but for three days Charlie lapsed in and out of consciousness. Finally, a nurse took Lucy aside.

"Do you know he's a 'no-code?' " she asked, meaning there would be no attempt at resuscitation if Charlie stopped breathing again.

Lucy was stunned, then livid.

"We literally begged the doctor to change the order," she said.

Lucy researched medical options and discovered that a portable ventilator could aid Charlie's breathing. She insisted that the hospital find one.

She said the doctor first resisted, contending that Charlie would be susceptible to infection, but then performed the tracheotomy. The ventilator fastened to Wedemeyer's throat, as well as a feeding tube inserted in his stomach, saved his life.

But while the procedures fortified his body with food and oxygen, they cost Wedemeyer the ability to speak, eat and breathe on his own.

As Wedemeyer lay in intensive care late one night, linebacker Michael Scialabba jiggled the lock and sneaked in, talking with his coach through Lucy into the wee hours.

When he got up to leave, Scialabba placed his hand on Wedemeyer's shoulder and said, "Coach, it's going to be an awesome season this year. But we're not going to be able to do it without you."

Recalling the scene, Scialabba, 40, now a teacher and assistant coach at Los Gatos, said, "He looked like a skeleton on the bed there. I remember trying to be positive and have words of encouragement. But when I walked out of that hospital room, I felt like I was never going to see him again. I was in tears."

Scialabba's words struck Wedemeyer. For the first time, he believed he could coach again.

Wedemeyer returned, this time sharing space on the golf cart with a ventilator and portable generator.

What happened that season was pure Hollywood. Los Gatos reached the Central Coast Section Division I championship game and beat favored St. Francis 14-12 on a blocked field goal in the final minute.

In the celebration that followed, Wedemeyer's respirator hose was knocked loose.

"You're not even breathing!" Lucy exclaimed.

Charlie just mouthed the words, "I don't care."

His new calling

Helping others to see

life is worth living

The euphoria was short-lived. In the spring of 1986, after nine seasons as head coach, Wedemeyer was fired because of the burden his illness had placed on his assistants. But Wedemeyer never left football. He makes an annual appearance at the Charlie Wedemeyer All-Star Football Classic in San Jose, and he continues to help coach the Los Gatos frosh-soph team.

Practice is a highlight, despite the two- or three-hour process of getting out the door.

First, he takes a "shower" while lying in bed. A Bundt cake pan lined with a garbage bag is placed under his head, and a pitcher of water is poured over his hair. A nurse pries his mouth open, brushes his teeth and suctions out the foam and rinse water. There's a shave, followed by a sponge bath.

Moving Wedemeyer is difficult. His body is the equivalent of a 160-pound rag doll, and he must be lifted and maneuvered so that pants and shirts can be put on despite the tracheotomy and feeding tubes sticking out of his body. Muscle contraction causes Wedemeyer's toes to curl, so Popsicle sticks are taped to the bottom of each toe to keep them straight while pulling on socks and shoes.

When it's time to leave, Wedemeyer is hoisted into the van by three people, including a nurse who holds a portable air bag to his throat until his respirator is plugged into the vehicle's generator. Then his wheelchair is latched to the floor.

Clad in a black Los Gatos coaching shirt, Wedemeyer is ready to go.

"Somehow, some way, things get done," Lucy said. "Some ALS families don't go anywhere, but life's too short."

There was a time when Lucy was unsure if Charlie could handle not being a head coach, fearing he would lose the drive to live. Instead, he found another calling.

As a favor to one of their nurses, the couple agreed to speak at a Christian couples retreat. They simply told their story, Charlie mouthing the words to Lucy, who relayed them to the audience.

When it was over, people approached, many weeping. They shared their own stories of personal tragedies, with a woman they had never met and a man who cannot speak.

After another speech at a youth camp, teens lined up for hours to share their stories. The last person in line was a boy, broken down by a hard-driving father. The teen said he planned to kill himself.

"A lot of us dads don't know how to say, 'I love you,' " Wedemeyer told him. "Maybe he doesn't know any other way. Maybe this is your opportunity to help him."

The more this sort of thing happened, Lucy said, "the more we realized it's not about us, but the abilities that God gave us."

Whether at churches, schools or charity functions, to ALS victims or San Quentin prisoners, the Wedemeyers have become messengers of hope. "Their stories are what fuel us," Lucy said. "No matter how tired we are, there's always someone that needs encouragement. All these people who look perfect and yet are broken inside."

Somehow, the barriers always come down, dismantled by a man who can't even talk.

"When people hear my dad speak, they don't remember the guy in the wheelchair," Kale said. "They remember the guy with the smile on his face."

Lucy said she no longer experiences the despair she felt years ago when Kale and Carri, barely teenagers, helped ease her pain with prayer. The family has been through desperate times, but those days seem far away. "I don't believe he thinks about dying anymore," Kale said.

No, Wedemeyer is beyond that. Only while broken did he discover the man he could be and the purpose that it would serve. It's not a path he would have chosen, but one that makes perfect sense now, as he described through Lucy one evening as she sat by his bed.

"We will always face challenges or circumstances that may seem insurmountable and too tough to deal with," he said. "When that time comes, we must have to make a choice. We can choose to feel sorry for ourselves, be bitter and angry and cause everybody else and us to be miserable. Or, we can choose to go through the situation knowing we will become better and stronger for it.

"You must remember, pain and suffering is inevitable. We're all going to experience it. But misery is optional."




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Contact David Kiefer at dkiefermercurynews.com or (408) 920-2703.
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