~ ALS Strikes Hard, But "I Can't Sit by And Watch My Wife Disappear"
ALS Strikes Hard, But 'I Can't Sit by And Watch My Wife Disappear'
The Santa Fe New Mexican, DEBORAH DAVIS, March 25, 2003
'I Can't Sit by And Watch My Wife Disappear'
Mark Brown refuses to accept the idea there is no cure for the disease that has struck his wife.
Since Randee Brown was told 2 years ago that she had amyotrophic lateral sclerosis, or ALS (commonly known as Lou Gehrig's disease), Mark has searched the Internet for hope every day. He reads every medical abstract he can find on neurological diseases, even if he can't understand them. He visits and revisits 25 Web sites each day.
"I don't have a choice," Mark said. "I can't sit by and watch my wife disappear. Doctors don't have answers. It makes no sense that healthy people get this disease for no reason. I can't accept that it just happens, so I have to look for the answer. It's my way of survival."
Researchers believe that ALS might be caused by a toxic excess of glutamate within nerve cells and that cells die because of that excess. Glutamate, the most abundant amino acid in protein, is produced in the human body and plays an essential role in metabolism. When nerve cells die, they cause paralysis of all muscles, including those that enable a person to breathe. People with ALS ultimately die of respiratory failure.
The Food and Drug Administration approved the first and only drug for ALS in 1995, but it only prolongs a person's life by a few months. Half of those diagnosed with the disease die within three years.
When doctors said they could do nothing for Randee, the Browns spent a few weeks at the Immune Institute in California. Randee endured light therapy, sonotherapy, potent Vitamin C injections, infrared saunas, growth-hormone injections and a rigid diet. It was expensive - nothing was covered by insurance - and the treatments didn't make Randee feel any better.
Through a friend, the Browns found out about a homeopathic doctor from France who concocts advanced homeopathic remedies, including one derived from patients' own spinal fluid. But that remedy didn't help either.
The couple also saw a shaman, visited sweat lodges, consulted with a South American healer and tried several other therapeutic treatments. Mark also learned of a secret treatment, a clear fluid they smuggled in for four months. The Browns weren't allowed to know what the fluid was or where it came from. It produced great results for one week, and then Randee's body crashed again.
Mark can no longer remember how he heard about Dr. George Schwartz, a Santa Fe doctor trained in emergency medicine whose father died of ALS.
Schwartz has developed a theory about how to protect an ALS patient's cells from dying. Platelets in the blood contain growth factors. Those growth factors make progenitor cells, which mature into repair cells that surround nerve cells and nourish them. In Randee's case, Schwartz wanted to see how the number of platelet growth factors could be increased so Randee's cells would be protected.
"Randee was going terribly downhill at this time, so we wanted to try anything," Schwartz said.
Schwartz read in medical literature about a drug, Thrombopoietin, being used in clinical trials to increase platelet levels in chemotherapy patients. Pharmacia, which licensed the drug from the manufacturer, Genentech, gave Schwartz permission to use Thrombopoietin in a clinical trial.
The FDA quickly approved a one-person compassionate-use trial, and Schwartz started boosting Randee's platelet levels in June.
A healthy person has 250,000 platelets. With the medication, given intravenously every three weeks, Randee has 2.4 million platelets. Increasing someone's platelet levels could cause a blood clot, so Randee also takes medicine that prevents platelets from doing that.
Her friends and family say the drug seems to have halted her deterioration. Randee, who remains cautious about any treatment, said the drug shows promise.
Dr. Robert Brown, a neurologist at Massachusetts General Hospital who has studied ALS for more than 20 years, watched a videotape of Randee before she started taking the drug and after she had taken it for 60 days.
He said he noticed subtle changes in the motor functions of Randee's hand, but he won't know whether the drug is a viable treatment until he sees Randee over a longer period and reproduces the study with other patients.
"It's hard to know how big of a deal this is," Mark said. "We hope and pray that (Schwartz's) observations are correct."
Massachusetts General is ready to duplicate Schwartz's study with six to eight people to see whether they respond similarly.
However, the drug manufacturer stopped producing the drug in 1998. Genentech guaranteed Schwartz the drug for one year, but the company is not releasing it to the Boston hospital, he said.
"Here we have a drug with possible widespread use for neurological conditions, and now it's kind of an orphan drug," Schwartz said. "No one wants it but us."
He said Genentech doesn't see a market for the drug now that chemotherapy is less toxic to platelets, but the company hasn't considered it as a treatment for neurological conditions.
Schwartz is checking with his attorneys to see whether they could arrange a licensing agreement with Pharmacia so the doctor could be responsible for subsequent work with the medication.
"There may be a way to continue, and that's what I'm looking for," he said.
Mark's anger and stubbornness have given him strength to try to deal with Randee's illness.
He believes stem-cell therapy or gene therapy offer some hope. A clinic in Atlanta removes stem cells from donated umbilical cords and injects them in people.
But Mark's skeptical about that procedure because it costs $20,000 and researchers are still debating whether it works. He is willing to pay whatever it takes to help Randee, but he questions the doctors' motives for charging so much.
So far, her disease has cost the Browns about $100,000. As Randee's body deteriorates, equipment that was once useful has had to be discarded.
To date, she has gone through a walker, a power scooter, a wheelchair, a borrowed power wheelchair and a manual chair.
Even though Randee collects Social Security and Medicare for her disability, they won't pay for most of her equipment or physical therapy and any experimental treatments.
Mark believes Randee is pleased he hasn't given up trying to find something, anything, that will help her. Someone may yet discover a cure, he points out.
"People say there's a point where you're supposed to accept this, let nature take its course and be at ease with it," he said. "Never."
(C) 2003 The Santa Fe New Mexican. via ProQuest Information and Learning Company; All Rights Reserved
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