A window of hope for man with ALS
Last spring, already profoundly affected by Amyotrophic Lateral Sclerosis, Steven Lieberman was spending his days steering his skis around the moguls on Heavenly’s Gunbarrel run. This year, he can only dream about it.
Since being diagnosed in January 1999 with ALS, or Lou Gehrig’s disease, Lieberman’s life has changed its course.
The disease, which blocks communication between the brain, spinal cord and voluntary muscles, has slowly crippled Lieberman, who used to pride himself on being the first one down the hill when skiing or the first one up the hill when mountain biking.
“Now I can no longer dress myself, cook for myself, feed myself,” he said his speech slurred. “My ability to speak and walk has become severely impaired.”
And it’s expected to worsen.
As the disease progresses, the body becomes a useless shell for a mind that works just as sharp as ever.
“Generally you become a prisoner in your own body,” Lieberman said. “You can’t communicate, move or express yourself.”
While some might consider ALS’s gradual paralysis the cruelest sort of punishment, Lieberman has chosen another stance.
To him, his fate is not necessarily a change for better or for worse. It’s a change that “just is.”
Getting to the point of acceptance didn’t come easy.
Anger, sadness and denial were Lieberman’s first reactions.
“When the doctor first diagnosed me, he said I had a couple of months to a couple of years left,” Lieberman said, looking out over Lake Tahoe from his apartment near the summit of Nevada’s Kingsbury Grade. “I said ‘what do you mean by that?'”
The statistics explain it all.
According to the ALS Association, 4,600 Americans are diagnosed each year with the disease. Worldwide, about six per 100,000 population are inflicted.
Of those, at least half live longer than three years; 20 percent live to five years; 10 percent live to 10 years; and 5 percent live to 20 years.
There is no know cause, no cure and no effective treatment. But, Lieberman, armed with hope, was determined to beat it.
“There’s documentation of a small percentage of cases where the symptoms just went away,” he said. “I was determined that that was going to be me.”
As the months passed, the disease started making headway. His immortality was shattered when he realized he could no longer do the sports he loved most, mountain biking and skiing.
“Last August, I was riding my bike on easy terrain and my hands were too weak to hold on to the handlebars and squeeze the break at the same time,” he said. “By the end of September, I was walking with a cane for the rest of my life.”
Doctors offer no help.
“They can’t do anything for you, except for document the gradual decline to death,” Lieberman said. “The reason I keep going back to Dr. Sullivan is that he helps me do what I want to do in my pursuit of a way to stop the progression of the disease. He often thinks I’m wasting my time but he’s still there to help.”
Routine visits entail planning for the future, not the promise of a cure.
“How are you?” Dr. Michael Sullivan asked Lieberman during a February check up.
Lieberman responds that he’s feeling fine but noticing that, in the last three to six months, he’s experienced a decline in the use of his hands and his arms are weakening.
“Have you fallen much lately?” Sullivan asks while he looks over Lieberman’s hands which are nothing more than skin and bones and curled into a permanent fist.
“What’s considered ‘much?'” Lieberman asks, joking.
“Like everyday,” the doctor replies.
Lieberman says that he trips about once a week. Pointing to a tiny cut above his brow, he explains that he hit his head on the edge of a coffee table last week when he fell.
While Sullivan, one of the few neurologists in Tahoe, tests his arm strength, Lieberman tells him that it’s getting harder to eat and swallow his food.
“How much longer are you going to be able to keep feeding yourself?” the doctor asks.
It’s a question that is unanswered in Lieberman’s mind.
“I’ll cross that bridge when I get there,” he says. “I have a living will that says no invasive devices like feeding tubes or ventilators unless I’m capable of communicating to over ride that.”
Sullivan nods, seemingly understanding of Lieberman’s decision to retain control over the end.
The visit ends with a prescription for muscle relaxers that will hopefully take away some of the spasticity in Lieberman’s legs.
The new pills will be an addition to the list of antioxidants and muscle building concoctions that Lieberman takes on a daily basis. None have been proven to help but the chance is enough to motivate him to keep swallowing the pills.
Rilutek, a drug approved by the Food and Drug Administration in 1995, also sits on his shelf.
If taken over a period of two years, the drug will prolong an ALS patient’s life for an additional three months.
But there’s always the option of cutting it short before the last stages.
“It’s easy for ALS patients to take their own life,” Lieberman said. “I know it’s there but I’m not ready to start thinking about that. I’m still having fun at this point.”
Many portions of his previous life have come to a close.
Lieberman sold his restaurant in November 1999, which later folded when the sale fell out of escrow. He’s also sold his skiing equipment and put away the mountain bike.
While some activities have ceased, others have taken their place.
Hanging out with friends and communicating through e-mail, is what he enjoys most. But in the wake of a debilitating disease, friends come and friends go; sometimes the pressure is too much for people to bear.
“Many people whom I barely knew have volunteered to help me,” Lieberman said. “Others who I felt were among my closest friends and relatives, some who regularly told me how much they loved me, quietly disappeared.”
As they went, an important person in Lieberman’s life reappeared.
Priscilla Sporl, his first love, called him when she heard the news.
“I haven’t seen her in years, but she sought me out,” he said. “This disease has taught me to really appreciate my friends. I’ve always had a lot of friends and this has brought on a new level of appreciation.”
Friends from high school, and even earlier, have come to Lieberman’s aid.
The disease has also taught him to be aware of greedy opportunists.
“You have to be aware of what I call the snake oil merchants, people who are selling things in the medical profession,” he said. “If you go to a doctor and they try to sell you a product, they have different motives.”
Although life is what Lieberman focuses on in his everyday battle with the disease, death remains a reality for Lieberman and all people living with ALS – and all people who aren’t.
“It’s not something that requires facing. Death just ‘is,'” he said. “You could get into a car accident and be dead tomorrow, and I could be alive 10 years from now as a quadriplegic.”
Lieberman is working on keeping control over his life while he loses the functions of his physical body.
Four days a week, home health care aids come to his house to help him shower and eat. A list of about 30 friends rotate through. Some come in the morning to help him dress, others come at lunch to prepare meals, and some stop by in the evening for dinner.
Although it takes him nearly 10 minutes to walk the 100 feet from his front door to the driveway, he still makes the trip, especially when it’s to trip to eat sushi.
Inside his apartment, a motorized wheel chair acts as a lounge chair in front of his computer. It waits there for tougher times.
He knows he’ll need it on a full-time basis eventually.
“I have been thrust into the world of the disabled,” Lieberman said. “I’ve never been a needy person but I am now needy and I very much dislike that.”
He’s been trying a variety of treatments that might slow the effects of the disease or even offer relief or assistance.
Acupuncture, physical therapy, dental revision to remove mercury, special protein diets and vitamin C infusions have all been tried.
In the meantime, he’s become an expert on the disease, and the Internet is his class room. Newsgroups, where he can communicate with other people who are living with the disease, help keep him informed. Meeting other people who have ALS has also been a learning experience.
Last August, early in the stages of the disease, Lieberman met with a group of people living with ALS, or PALS.
He remembered that, in the group of about 12 almost every stage of progression was represented. One man, a quadriplegic, could only move his head, lips and eyes.
The meeting was a turning point.
“I was encouraged – this guy still has a life. He has a lap top computer and a mouse that works with his head so he can type,” Lieberman said. “Up until that point, I couldn’t imagine myself like that. But seeing him I said ‘I could do that.'”
While he’s willing to surrender his physical capabilities, there is one aspect of his life he refuses to let go of – his apartment.
Perched at the top of Nevada’s Dagget Summit, a sprawled out Lake Tahoe expands the length of the picture window in the living room. At night the lights from Squaw Valley’s Mountain Run illuminate the most distant ridge line. During the day, giant pine trees shade the building, offering an array of lighting variations that change with the mood of the minute.
“This is a pretty nice prison to be in, and, in many ways, I am in prison.”
Editor’s note: This is the first of an occasional series documenting Steven Lieberman’s struggle with ALS.
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SOUTH LAKE TAHOE, Calif. — El Dorado County officials are suspending use of the Johnson & Johnson vaccine, but that will not impact the vaccination clinic being held Sunday and Monday in South Lake Tahoe.