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Scott Kowalske spends most of his days sitting in his easy chair trying to fight the pain resulting from what some physicians believe is chronic wasting disease.

Wasting Away

Man battles extremely rare, painful disease

Kowalske’s hands show the toll the disease is taking.

TRAVERSE CITY - There has been a price put on Scott Kowalske's life — and time is running out to pay it.

The amount, $22,000, is what is keeping the 42-year-old father from life-saving, legal stem cell replacement therapy to end a condition that is wasting away his muscle, bone, and perhaps, even brain tissue.

His fingers, once so adept with a golf club that he was a scratch player, are now twisted raw stumps as a rare, rogue protein eats away the bone — an inch off of every finger and half of five fingers. His legs are numb, so much so that he needs crutches to shuffle slowly around.

And the cruelest twist of this rare condition is the loss of the delicate myelin that covers all of his nerve endings, plunging Kowalske into maddening, relentless pain that is managed with an astonishing 1,950 milligrams of the narcotic Darvon every single morning.

Equally astonishing is the lack of information available to Kowalske about his condition, which has stymied disease specialists at the University of Michigan, two Mayo clinics, and the Scripps Research Institute in California.

Dr. James Novak, a family doctor who practices integrative medicine in California, has regularly seen Kowalske since 2003 and said that the only way to find out with certainty what his patient has is to "do a brain biopsy when he is dead.”

"He is a very sick man and this is a very difficult situation,” said Novak, a Los Angeles-based physician with the Presidio Group who is highly regarded for his success with the chronically ill.

After reviewing Kowalske's thick files, spinal tap results and numerous muscle biopsies, as well as conducting his own tests, Novak diagnosed Kowalske with chronic wasting disease, a Creutzfeldt-Jakob Disease variant. To date, less than one-tenth of one percent of the American population is known to have had what Kowalske has, said Novak. And to even suggest that chronic wasting disease, a version of mad cow disease that affects deer, may have jumped to the human population is "very serious, very unusual,” said Novak.

"There are a lot of implications for the food supply and authorities just don't want to go there,” he said. "There is more of this going around than the authorities have let on to.”

Though unsure exactly where Kowalske contracted CWD/CJD, Novak said it could have come from beef or venison.

"I just don't think anyone can say for sure where it came from; it could be deer, it could be beef,” he said.

And though such a diagnosis is a veritable Pandora's box, Kowalske, also suffering from diabetes and Lyme disease, said he could care less where it came from. His faith at this moment is locked in the hope that he will live.

"I keep thinking God has a plan for me,” he said. "I will come through this and get back to a normal life.”

The way to ensure that is to receive a legal cord blood stem cell transplant, according to every specialist Kowalske has seen. This procedure costs $35,000, about two-thirds of which has been raised locally (see related story on this page).

Though losing his digits and mobility has been hard enough, the pain has brought Kowalske to "incredible depths of misery,” he said.

And so each day, he swallows 15 Darvon just to get out of bed, and one Actiq lollipop, a synthetic opioid developed for stage IV cancer patients. He takes more in the afternoon when the searing pain begins again.

"My whole day functions around pain, I never get below a five,” he said. "I just deal with it until it's unbearable.”

Kowalske's days, once filled with hobbies and operating a successful roofing business as co-owner, are now spent going to doctor's appointments or in bed, where he sleeps an hour or two at a time, in front of the television.

To pay for the staggering medical bills, most of which are not covered by insurance because of the nebulous diagnosis, he has tapped his life savings, his parents' home has been mortgaged to the hilt, and now he is desperately seeking help from the community he has called home since 1991.

"I feel someone is out there who will help me,” he said. "I still have that hope that somebody still cares if I live or die.”

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