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Amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS, sometimes called Lou Gehrig's disease) is a progressive, invariably fatal motor neurone disease. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away (atrophy), and twitch (fasciculations). Eventually, the ability of the brain to start and control voluntary movement is lost. more...

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ALS causes weakness with a wide range of disabilities. Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, patients lose the ability to breathe without help from mechanical ventilation. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 % of ALS patients survive for 10 or more years.


As many as 20,000 Americans have ALS, and an estimated 5,000 people in the United States are diagnosed with the disease each year. ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. ALS most commonly strikes people between 40 and 60 years of age, but younger and older people also can develop the disease. Men are affected more often than women.

In 90 to 95 % of all ALS cases, the disease occurs apparently at random with no clearly associated risk factors. Patients do not have a family history of the disease, and their family members are not considered to be at increased risk for developing ALS.

About 5 to 10 % of all ALS cases are inherited. The familial form of ALS usually results from a pattern of inheritance that requires only one parent to carry the gene responsible for the disease. About 20 % of all familial cases result from a specific genetic defect that leads to mutation of the enzyme known as superoxide dismutase 1 (SOD1). Research on this mutation is providing clues about the possible causes of motor neuron death in ALS. Not all familial ALS cases are due to the SOD1 mutation, therefore other unidentified genetic causes clearly exist.


The onset of ALS may be so subtle that the symptoms are frequently overlooked. The earliest symptoms may include twitching, cramping, or stiffness of muscles; muscle weakness affecting an arm or a leg; slurred and nasal speech; or difficulty chewing or swallowing. These general complaints then develop into more obvious weakness or atrophy that may cause a physician to suspect ALS.

The parts of the body affected by early symptoms of ALS depend on which muscles in the body are damaged first. In some cases, symptoms initially affect one of the legs, and patients experience awkwardness when walking or running or they notice that they are tripping or stumbling more often. Some patients first see the effects of the disease on a hand or arm as they experience difficulty with simple tasks requiring manual dexterity such as buttoning a shirt, writing, or turning a key in a lock. Other patients notice speech problems.


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He will carry on - caddy Bruce Edwards is diagnosed with amyotrophic lateral sclerosis
From Golf Digest, 5/1/03 by Dave Kindred

ONCE THE DIAGNOSIS OF AMYOTROPHIC lateral sclerosis was made, Bruce Edwards understood why his left hand did what it did.

The caddie cleans golf balls by taking them in his left hand and rubbing them with a towel in his right. He has done it without thinking for 30 years. But one day last October, reaching for a ball from Tom Watson, the fingers on Edwards' left hand were curled shut, locked there.

"Look at this," Edwards said, extending his hand toward Watson. Only by conscious effort could he spread his fingers. He said, "I must have arthritis."

In January this year, because he'd found it difficult to enunciate words and his speech had slowed down, Edwards went to the Mayo Clinic in Rochester, Minn. Tests confirmed the presence of ALS, a chronic, progressive disease marked by the degeneration of brain and spinal-cord nerves that control voluntary muscle movement.

Because there's no good news in such a diagnosis, the question becomes: What now for Bruce Edwards?

"My plan," he says on a happy, sunny day in Florida five weeks later, "is to carry on."

Which explains the banter between buddies when Watson says, "I'll hit drivers, toward that cart."

The caddie's job: chase down each tested ball. But the target cart is 20 yards left of a practice tee littered with pro-am hackers. So Edwards says, "If you hit it right, I'm in big trouble. The way they're shanking wedges, they'll kill me."

Kibitzer Hubert Green pipes up. "Who's paying your salary, Bruce? Tom, or those guys?"

Edwards laughs. "But who's going to replace my dentures?"

About a year and a half ago, when Kimberly Julian's husband was diagnosed with ALS, she asked doctors the what-now question. There came no good answer. She says, "It was like they gave you some pills and said, `Here, go home and die.' "

Instead, Jeff Julian played the PGA Tour the past two seasons, even when his speech was so weak that his wife stood in for him at press conferences.

Now comes Bruce Edwards answering the question.

Here's a start: He got married.

Wonderful, the way life's choices work. It was 1974. He was 19, Marsha Cummins was 17. He was a caddie, she was a Nelsonette chosen to pretty up the Byron Nelson tournament. At week's end, down the road he went. Maybe he'd spend a year out there, then go to college. Maybe he'd see her again, maybe not. They'd stay in touch.

He was a Connecticut dentist's son. A sister became a Navy commander, a brother a root-canal specialist, and another sister found her niche in public relations. For him the year on the road became five years, 10, 25 years. He loved it. It fit him, laughing in the sun.

It's good, yes it is, to hook up with a great player in a life that keeps you smiling and gives you a front-row seat at history, at the Opens, Masters, PGAs and Ryder Cups. And whatever that great player did, Marsha knew Bruce was there. He called her, staying in touch, life happening, marriages come and gone. Then, in May last year, again in Texas, he asked Marsha, "You want to come to dinner?"

She says there was a nice feeling at dinner that night, as if the kid caddie and the Nelsonette had never been apart. "We just started right up where we'd left off."

New Year's Eve, Edwards proposed.

He did it not knowing that two weeks later he would need to go to the Mayo Clinic.

"After the diagnosis, everybody--Bruce, Tom, Bruce's father--told me I didn't have to marry Bruce, no one would fault me," Marsha Edwards says. "The thought crossed my mind for a second, but only a second. Absolutely nothing could keep me from Bruce."

So why wait for a summer marriage when the gang's all in Hawaii with the Champions Tour? Watson and his wife, Hilary, arranged the wedding on a Kona beach at sunset. Marsha called it "just gorgeous, very romantic."

At age 48, Bruce Edwards gains a wife, two children (Brice, 9, and Avery, 8) and a teething yellow Labrador retriever. "When you suddenly have a wife, two kids and a puppy," he says, "your life changes radically."

He smiles on this day in the sun, sitting with Watson in a golf cart, and now, the way these happy moments go, they're back at Pebble Beach, 1982.

They're standing in the tangled grass on that knoll, the ocean behind them, history ahead.

The caddie says, "Get it close."

Not likely. Not from that stuff. With nowhere to land it. Not on Sunday, not on the 71st hole, not with the U.S. Open Championship at stake.

The player says, "I'm not going to get it close, I'm going to hole it."

The caddie pulls the bag away. Says nothing. Thinks, Yeah, right, just make a 3, and let's go win it on the last.

Now Edwards says, "I remember vividly the ball being this far away," he says. His hands are 10 inches apart, the ball rolling, this far away, rolling toward the hole as surely in the year 2003 as it did that day at Pebble Beach.

"It was breaking left to right, right in the middle," he says, leaning against Watson's shoulder, "and he cocked his head and said to me, `I told you.' And then it went in and then he took off, ran across the green, turned around, and it was almost like he was accusingly pointing at me ..."

Laughing here ...

" ... like a teacher who walks in the bathroom when you're sneaking a cigarette in the sixth grade and says, `I got you!' It floored me that here he had just holed the shot, and I look at him and he's giving me the I-told-you-so."

Watson loves it. If you're a guy's buddy long enough, you don't need to hear what he says to know what he's thinking. The way Edwards pulled the bag, Watson knew: "It was a little needle."

Then he knocked it in, and they ran in circles, and the caddie remembers it as "a cool moment." There is that, and Watson remembers another: "Our hug on the 18th."

It's way past sentimental to say that historical greatness is the least important result of the Watson-Edwards partnership. With Edwards since 1973, Watson has won 40 tournaments, including that Open. To hear them, though, you might excuse the sentiment.

Edwards calls Watson "the older brother I never had," and Watson defines their relationship by saying, "Friendship, love, respect." Then Edwards adds, "It's a caring."

Watson and Marsha Edwards have relieved their man of dealing with doctors because the medical talk is so negative. Bruce says, "This way, it's easier for me to carry on, to live my life. It's like, even though I know I have it, I play a little game in my mind that I don't."

It's a game Kimberly Julian knows well. As Watson puts it, "She told us, `Live in denial. Be positive, go forward, use as much information as you can, try everything you can.' "

For Marsha Edwards, it's a choice. "You can either worry or be happy, and Bruce has chosen to be happy. And we have extreme faith in the Lord that we will have a miracle."

A day in the sun, happy.

There with Watson, laughing.

Answering the what-now question.

"I've always been a firm believer that golf parallels life," Edwards says. "What I've drilled into the guys I've caddied for--whether it's Tom, Greg Norman, John Cook, Lee Janzen or Jeff Sluman--is that what makes you a champion is how you deal with adversity.

"Anybody can be a champion if things are going great. But inevitably, in every tournament, every week, there is a time, whether it's three holes, five holes, nine holes, when things don't go so well.

"The true champions are always the ones who get through that and carry on. And that's where I am right now. I'm having a rough nine holes, and I hope it's only nine holes, because I'll get through this. That's the way I've always caddied, so why would I not live my life that way as well?

"I got a wonderful letter from an old man who said, `You are an inspiration to other people who have the same disease, because they're looking at you in a positive light.'

"I don't want to be a poster boy for this, but if I can make one person see that it's not devastating, or it's not the end of the world, and that it's the battle that's important, not the end result, then maybe I was the right guy to get this."

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