Star-Tribune staff writer
Don Cook can walk again.
Not necessarily a nimble or fast walk, but certainly a walk more powerful and controlled than the ALS-caused meager shuffle two years ago that barely transported him from the living room to the kitchen of his small house on Washington Street, he said.
"It doesn't take long where it will waste away a muscle," Cook said of amyotrophic lateral sclerosis, known as "Lou Gehrig's disease." He credits his recovery in part to embryonic stem cell treatments he received in March at the Emcell Clinic in Kyiv, Ukraine, he said. "I had all kind of confidence it would improve my condition," Cook said. "I was the ninth person to get this in this clinic," he said as he watched a documentary on the clinic's Web site at (www.emcell.com
Cook, 69, was diagnosed with ALS in 1999, a progressive disease from an unknown cause that attacks nerve cells in the brain and the spinal cord.
According to the ALS Association, the disease eventually kills these neurons, blocking nourishment to the muscles and causing them to waste away. The brain then cannot initiate and control muscle movement.
By SARAH BETH BARNETT
Don Cook of Casper, who suffers from 'Lou Gehrig's disease credits his ability to walk more efficiently to the embryonic stem cell treatments he received at the Emcell Clinic in Kyiv, Ukraine.
Don Cook credits stem cell treatment in Ukraine
COOK: Casper man plans to have another treatment in March
"With all voluntary muscle action affected, patients in the latter stages of the disease become totally paralyzed. Yet, through it all, for the vast majority of people, their minds remain unaffected," according to the ALS Association's Web site (www.alsa.org
About 5,000 Americans a year are diagnosed with ALS, and about 30,000 have the disease at any one time. After diagnosis, half of them will live at least. three years, 20 percent will live at least five years, and up to 10 percent will live more than 10 years, according to the association.
Cook's ALS damaged the nerves and muscles in his legs and left arm, he said. Scientists are researching both the causes and treatments for the disease, according to the association.
Last year, Cook participated in a clinical trial of a drug for the treatment of ALS, but his doctor told him to quit because the drug had no effect, he said.
Meanwhile, Cook learned of the success of stem, cell treatments on laboratory animals, the work of EmCell, and its potential for diseases such as Parkinson's disease, heart disease, diabetes and ALS, he said.
According to the clinic's Web site, "infinite opportunities have been predicted for Stem Cells as a source of 'spare parts' for the human body. At the same time, substantial experience has been already accumulated in clinical application of Embryonic Stem Cell Transplantation."
But the stem cell treatments don't exist yet in the United States because it's only being investigated in laboratories, said Lucie Bruijn, scientific director of the ALS Association. "Although it's extremely promising, there's a huge challenge for it to be a therapy for ALS," said Bruijn, a biochemist in Connecticut. "It's not clear at this point that it's going to be an effective therapy." She would not put a time frame on when stem cell research will progress to the point that it will be used for therapy, she said. But the ALS Association intends to press for more funding and safe, effective research, Bruijn said.
While ethical concerns will remain about using embryonic stem cells, she underscored the vast difference between that research and cloning. Stem cells can come from a variety of sources such as embryos, placentas, umbilical cords or adult bone marrow, according to the "Stem Cell FAQ" at the Web site (www.aarp.org/bulletin
But use of embryonic stem cells has sparked an intense ethical debate because extracting these stem cells — basic building blocks for body tissue — destroys the embryo, according to the AARP and the National Institutes of Health at its Web site. Many, though not all, opponents of abortion regard the destruction of the embryo as the same as the taking of human life.
Cook, too, knows of the ethical concerns surrounding embryonic stem cell research, but does not believe it involves taking human life, he said. "To me, I can't see why they can't let them go and do all this work," Cook said. "It has nothing to do with a fetus."
During Cook's education about the disease, he learned about the EmCell Kyiv and its work with stem cell treatments, sent the clinic his medical records, and received approval in January to get treatment, he said.
The clinic asked for $15,000 in cash up front for the treatments, and Cook paid several thousand dollars more for air fare and housing for eight days, he said. Insurance did not cover any of these costs, he added. Cook received a stem cell treatment for his immune system on the first day of his visit, and the results occurred literally overnight, he said. The next day, Cook could walk, he said. He received other treatments later that week, and returned home. Walking was wonderful, maybe too wonderful.
After Cook returned to Wyoming, he was visiting relatives in Gillette, took too big a step, fell backwards, and broke his left arm, which was still immobile from ALS, he said. After his arm was set, the stem cells "attacked the arm and healed the bone," faster than either he or his doctor expected, Cook said.
Besides the stem cell treatment, he also maintains a regimen of physical therapy to strengthen the muscles in his legs, he said. Physical therapy alone, he added, would not accomplish anything without the stem cell treatment.
Cook returned to Kyiv in August for a six-day stem cell treatment, this time costing $10,000, he said. The second treatment did not have the same dramatic results as the first treatment, but Cook believes it has kept the ALS from spreading, he said. "It hasn't gotten any worse." He plans to return for a third treatment in March. After these three series of treatments end, Cook expects he will need to go through the same series again in two or three years, he said. By then, Cook hopes that stem cell treatments will be widely available in the United States. "If they don't get something like that here, a lot of people are going to die," Cook said.