By Russ Oechslin, Sious City Journal
Nick Huber became sports information director at Buena Vista University last fall. A year earlier he had been diagnosed with Lou Gehrig's disease.
It makes a person "desperate," says Huber, who recently returned from China where he spent a month getting stem cell treatment and therapy in Beijing. "Time is not on your side with ALS."
Amyotrophic Lateral Sclerosis is a debilitative neurological disease that usually has its onset in victims over 50 years old. As a graduate student at Minnesota State University, Mankato, and only 23, Huber explains that his doctor at Fairview-University Hospitals in Minneapolis told him he was the youngest patient he had diagnosed.
Huber's first symptoms included a twitching under his skin -- "like worms crawling around," he says. He waited several months before seeing a doctor, not realizing the severity of the situation.
In the last year the left-handed high school and college first-baseman who stands 6 feet, 3 inches, says he has been on a high-protein, high-fat diet with vitamins and a lot of vegetables, "to keep my weight up."
He weighs 175 pounds and must avoid caffeine and sugar -- especially chocolate -- which Huber admits is difficult. He hasn't had a cup of coffee in 14 months.
The Chinese treatment from Dr. Huang Hongyun, which he had done last December, involved the injection of stem cells into two holes drilled into Huber's forebrain in a one-hour surgery. The surgery followed a week of intensive vitamin and physical therapies. The next day Huber says he noticed remarkable improvement and continued therapies.
"They don't know how it works," Huber's wife, Ann, says. "And no two people respond the same way."
"I was hoping my hand would get better. It wasn't right away. But my legs were noticeably better. We noticed the improvement within 24 hours," Huber says.
Huber says he continues to suffer from muscle cramps and has difficulty walking on inclines, but walks much better now and is able to handle stairs better than before the treatment.
Would he do it again? Huber doesn't know. "It would be successful if it slowed the progress of the disease. It will take time to find out," he says, adding he would recommend it to others suffering from ALS.
Since the actual surgery only takes about an hour, Huber theorizes there might not be a need for the trip to last four weeks. "But there's a lot of stress on the body in travel. We're glad we did it this way. It might not be necessary, but probably maximizes the benefits."
The Web site for the ALS Society of Canada discloses that in September 2004, when Dr. Huang met with a small group of ALS researchers to discuss his stem cell transplant efforts, he reported having treated 40 people with ALS using spinal cord and forebrain injections, each including 1 million olfactory ensheathing cells.
Huang is now treating about half that number each month and has patients scheduled into 2006 for the $19,000 treatment. About half of those are U.S. citizens, according to Huber.
The Canadian Web site reports that at this time there is "not sufficient information" about Dr. Huang's work to "know with certainty that the treatment is safe and effective."
But Huber said he felt he had to take a chance and wait to see what would happen.
"We wouldn't know what it would be like if we didn't do it," he says. "It might have been totally useless. But we can't be sure."
And he doesn't see stem cell research as something that should be a partisan issue.
"Even if the stem sells originate from aborted fetuses," he says, "to get something good from something negative is a good thing. It's not as if you are creating an embryo for stem cell research."
Another Storm Laker, Steve Scarbrough, sees the Chinese treatment as a possible solution as well.
Scarbrough's father, Al Scarbrough, who was a vice president for human resources at Sioux Valley Hospital in Sioux Falls, died in 1991, at age 61, after a five-year battle with ALS. At that time, Scarbrough says there were "no real options" for treatment. "The people at Sioux Valley Hospital would have done anything. But there was nothing they could do."
Scarbrough, a member of St. Mark's Lutheran Church in Storm Lake, says he's "a very religious person -- not ultra right wing. And I have an extremely strong faith. It's one of the things my parents brought us up with. But one of the questions we had to deal with when Dad became sick is 'Why?'
"Had anything -- anything reasonable -- been available he probably would have tried it. I'm not talking about anything wacko. But we would have considered anything reasonable. There were just no options."
That's why Scarbrough explains he's "an advocate of stem cell research. There's a fine line on how you get the stem cells. My opinion is that they're not looking enough at alternative means of getting stem cells."
His brother Dave Scarbrough, who lives in Sioux Falls, says he is glad to see progress being made in stem cell research, as well. "I'm 110 percent for stem cell research. It is really important to me, also because I have an autistic daughter. There are all sorts of maladies where this comes into play. The progress is just amazing.
"They're even talking about getting stem cells now from fat tissue. And you know there's plenty of liposuction surgery going on now."