Diagnosed with ALS
Daily Bulletin reporter to chronicle his struggles with Lou Gehrig's disease
The signs were there: Diagnosis confirms Lou Gehrig's disease
By Leo Greene, Staff Writer




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Leo Greene, a reporter and videographer for the Inland Valley Daily Bulletin, was diagnosed with amyotrophic lateral sclerosis on Aug. 16. ALS, commonly referred to as Lou Gehrig's disease, is a progressive neurodegenerative disease that attacks the brain and spinal cord. Most of its victims die within five years of diagnosis.
In a monthly column that debuts today, and through videos available online at www.dailybulletin.com, Leo will explain his thoughts and feelings as he tackles the disease, and hopes to educate the public and bring more attention to an overlooked illness that afflicts more than 5,000 Americans each year.




Like an old neon sign, parts of my nervous system are buzzing, flickering, beginning to blink out.

As the neurons die, the muscles follow.

My arms grow thin. I limp. My speech slurs. Two hands are needed to shave.

I suffer from a disease called amyotrophic lateral sclerosis, also known as ALS, or Lou Gehrig's disease. I received the official diagnosis just 11 days ago.

" ... and there's no cure," my doctor said, tucking the phrase into the end of a long sentence.

ALS does its dirty work by killing off the nerves leading from the brain and spinal cord to the body's voluntary muscles.

The strength to move at all -- to eat, to talk, even to breathe -- will eventually be taken.

A similarly declining Lou Gehrig -- a legendary first baseman and home-run hitter whose consecutive games played streak reached 2,130, a mark not eclipsed until 1995, when Cal Ripken Jr. broke it -- pulled himself out of the New York Yankees

Leo Greene undergoes a test to meassure the current in his muscles that have been giving out on him. (Mediha Fejzagic DiMartino/Staff Photographer)

lineup in May 1939. A renowned Mayo Clinic physician diagnosed Gehrig with ALS the next month.

With the stadium packed, Yankees fans celebrated the retirement of their beloved slugger on July 4 of that year.

They called it Lou Gehrig's Day.

"I consider myself the luckiest man on the face of this Earth," the shy and always gracious Gehrig said during an impromptu farewell speech.

Two years later, the Iron Horse of pro baseball died.

ALS remains 99 percent fatal 65 years later, and its cause is still a mystery. As a rare disease with a short life expectancy, ALS attracts relatively little research money.

The National Institutes of Health lists only 27 active or pending clinical trials for ALS, compared to 142 for Parkinson's disease, 359 for prostate cancer and 667 for HIV.

As for my diagnosis, it didn't come as a great surprise. I've strongly suspected the worst for six months or longer.

About three years ago, I began experiencing problems with my voice, slurring my words at times.

Then, my right leg began to weaken and drag. I fell one day coming out of a store and had difficulty getting up.

My primary care physician checked me for stroke. The neurologist advised watching and waiting.

The weakness then spread to my right arm and into my neck. At night, my muscles twitched.

Back with the neurologist, tests were advised.

Physicians have no single test that says this is a case of ALS. Rather, the path to diagnosis involves ruling out anything else that might be causing the symptoms.

The neurologist, Dr. Bhupat Desai, of Upland, ordered blood draws, MRIs and a lumbar puncture. According to the tests, I was the picture of health.

In my case, that was bad news.

Finally, Desai administered an EMG, or electromyography, on Aug. 16. The test measures the electrical current in muscles and compares it to base-line readings.

During a part of the test, tiny Teflon-coated needles were inserted in my right arm and right leg. The machine chattered noisily as I was instructed to flex.

Afterward, the neurologist rendered his opinion. According to the test, the muscles in my right arm and right leg showed damage.

"That goes along with primary motor neuron disease," Desai said. "Also known as Lou Gehrig's disease."

I knew it was coming. I'd known since my primary care doctor advised me six days earlier to find a support group. And I was already trying to get my mind around this new reality.

My case is terminal. On average, those with ALS survive somewhere between two and five years after diagnosis. The likely manner of death is pre-determined.

Though I strongly suspected the worst, hearing the doctor say it was another matter. I took the diagnosis as a death sentence.

I feared losing the strength to write, research, even to cope.

And I grieved the likely loss of so many experiences: seeing my two younger sons graduate; being there as a safety net for them.

I grieved not growing old with the woman I love.

I grieved my own passing.

Somewhere in the days that followed, that negative worldview began to turn, righting itself in the rooms of a certain 12-step program where strength is found in gratitude, turning it over to a higher power and living one day at a time.

I had a lot to be grateful for: a loving and supportive mate, beautiful children, a wonderful family, dear and caring friends and co-workers. At 60 years of age, I've had a remarkably full life.

And as for today, I'm a bit hobbled, but still very much alive.

I can still work and earn a paycheck practicing the craft I cherish. And as a journalist, I can raise awareness and perhaps research dollars to find a cure for this awful disease.

And just maybe, that cure will come during my lifetime.

On Oct. 15 at USC, the ALS Association Greater Los Angeles chapter will hold its annual fundraising walk. The Orange County chapter has scheduled its walk for Oct. 21 at William R. Mason Park in Irvine.

You'll find me there, wearing the red wristband that says, "Never give up."

Photo Gallery: Leo at doctors, 08/27
Watch Video: Leo tells his story, 08/27
Special Section: Leo's Story

L.C. Greene can be reached by e-mail at l_greene@dailybulletin.com or by phone at (909) 483-9227.