Darrin Umbarger is looking for liberation — from his wheelchair.
He and two other multiple sclerosis patients will travel to San Diego for “liberation therapy,” a controversial new treatment that
aims to increase blood flow from the brain with angioplasty. The
procedure has galvanized the MS community and drawn skepticism from
neurologists.
Umbarger’s condition came on suddenly 22 years ago.
“I went to bed one night and when I woke up, I couldn’t walk or talk,” he said. “Everything on my left side shut down.”
The 23-year-old had lived a high-octane life. He hunted and fished, danced a lively western swing and reveled in driving a rumbly Chevy
truck with 36-inch tires. He played tirelessly with his baby son,
Jeremy. As Umbarger’s muscles and balance became increasingly
unpredictable, he and his wife Carol opted to close their carpet
cleaning business when Darrin experienced falls.
“As Jeremy started using his legs,” Darrin said, “I began losing mine.”
These days, Darrin navigates around town in his iBot wheelchair or handicapped-accessible van. He and Carol operate the Clearview
Mediation and Disability Resource Center.
Several months ago, Darrin visited a Craigslist chat room where MS patients discussed a radical new theory by Italian vascular surgeon
Paolo Zamboni. Zamboni found that 90 percent of MS patients he
examined had improper drainage from the brain caused by blockages
or narrowing. The blood backs up and deposits toxic loads of iron
that become lesions which trigger MS symptoms such as brain fog,
muscle weakness, fatigue, tremors and double vision. Zamboni dubbed
the blood backflow condition cerebral venous insufficiency and
theorized that MS may not be an autoimmune condition, but rather a
vascular disease that can be treated with surgery.
Darrin read with fascination. A later Zamboni study followed MS patients through surgery. Videos and testimonials from people who
had tried the procedure were compelling.
Darrin is so certain the procedure has merit that he and two friends with MS — “the 3 MS-Kateers” — are ponying up $13,000 each
for the surgery. Darrin is working to raise money for a trek to San
Diego’s Hubbard Foundation with Steve Lusty and Julie
Douglas-Birrer, who both grew up in Pendleton. Douglass-Birrer and
Lusty are waiting for Darrin to gather funding before scheduling
the procedure in the next couple months.
Not everyone is convinced about Zamboni’s research. The National MS Foundation is funding research, but withholding judgment. The
medical community is urging caution.
Dr. Michele Mass, associate professor of neurology at Oregon Health & Sciences University, isn’t convinced. Subsequent studies have
failed to replicate Zamboni’s findings, Mass said, and she won’t
recommend the therapy until other studies, such as larger trials
sponsored by the National MS Foundation, show efficacy.
In addition, she said, the surgery isn’t risk-free.
“This is not a benign procedure,” Mass said. “One patient has died in this country from liberation therapy and another required
open-heart surgery after a stent fell into the heart.”
Darrin insisted he is going into surgery with his eyes wide open and so are the other MS-Kateers. The risks, he said, seem far less
dangerous than side effects of costly MS drugs, side effects
ranging from mild flu-like symptoms to a type of bone marrow
cancer.
“The cheapest MS drug on the market is $1,000. The newest drug is $50,000 a year — it may or may not kill you,” said Darrin, who has
his liver tested each month for toxicity.
Research has only cemented Darrin and Carol’s desire to go ahead, though they say they aren’t expecting Darrin to start doing back
flips or cartwheels.
“Of course, we’re hoping for miracles,” Carol said, “but we’re not expecting him to walk out of the hospital.”
Darrin, who said his left jugular vein is 85 percent blocked, is eager to climb on the operating table.
“Hope — it’s got to be there,” he said. “You’ve got to be positive.”
Darrin is just getting his fundraising efforts revved up. Perhaps good karma will help him. The Pendleton man has spent years as a
friend of people with disabilities, finding jobs for them,
arranging for technological assistance and writing grants.
Individuals wishing to help Darrin on his quest may donate to a medical account set up at U.S. Bank.
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