Date posted online: Thursday, February 10, 2005
Copyright © 2005 Sioux City Journal
By Russ Oechslin, Journal correspondent

STORM LAKE, Iowa -- 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."

http://www.easytravelpage.com/nickann

A part of the Blog includes the following:

December 20, 2004
"I am out of surgery and I just got done having lunch. Surgery lasted about one hour as expected. They took me back to the operating room and gave me local anesthetic after measuring my head and drawing lines all over it. They then began the drilling for oil.

"They started on the right side and after awhile it became apparent the drill was stuck. The nurse held my face as they attempted to free the drill by rocking it back and forth. I knew they eventually had to get it out because I couldn't imagine living life with a drill bit in my head. To think we had stares before! Eventually it freed and they began then on the left side.

"I could feel the pressure from the drill but no pain. All the while my face was shielded and I couldn't see what was going on around me. The surgical nurse informed me it would be about 10 minutes for the cells to arrive. During that time I was able to enjoy the elevator music in the background, such as Pretty Woman, The do-re-me song and various others. The cells arrived evidently and were injected -- presumed into both holes. I heard a squishy noise on one side. Then I waited another 10 minutes while the doctors had numerous laughs. Ten minutes later they stitched me up -- I must admit this was the most painful part of the procedure. I am such a wimp, but I do think the local was starting to wear off.

"They then propped me up and wanted me to jump off the bed (which felt inappropriately high off the ground) and sit in the wheelchair. My legs were very shaky and bouncy. They rolled me back to the room where beautiful Ann was waiting with a camera. (Shades of Grandma Sorlien!) Then they helped me into bed where I lay flat for 3 hours. I wore a nasal cannula with oxygen and a vital sign monitor up until I had to get up and pee. Since then they have been in to check BP and temp every so often. All appears normal -- temp 36.9 C it seems every time they take it. I feel about the same as I did when I woke up this am with the exception of a very light, dull, headache."

December 21, 2004
"Just before bed Nick thought he noticed his walking getting better. He felt stronger and his balance improved. I had noticed it earlier as we walked to the common room pre-poker, but didn't say anything just then. It was a very positive note to head to bed on. This morning Nick says he feels about the same as last night. He is sad, however, that therapy doesn't start since he is ready to work at it.
"There is a new group moving in today from Cleveland and one from the Netherlands. It's nice to see fresh faces after awhile! We have lots to share with them and feel a bit like old hats since it has been a week already and we've learned a few of the ropes..."

Photographs of the couple's trip are available for viewing at: http://photos.yahoo.com/ajorstad