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Enduring life’s lists

Enduring life\’s lists Article published Dec 31, 2006 – Epilepsy

He has no lists of New Year’s resolutions to propel him into the future; for now, a reflection of the past is alluring enough.

STAFF PHOTO / E. SKYLAR LITHERLAND

Doug Minturn still carries laminated copies of his monthly bus passes in his front pocket, even though he no longer rides SCAT buses. He now gets around town via SCAT’s Plus Service for the disabled.

BY BILLY COX

Sometimes it seems as if Doug Minturn’s essence can be whittled into lists.

Some lists are better than others. The wheels he used to have so much fun with, for example — that’s a good list:

Five bicycles, four mopeds (“I clocked two at 70 miles an hour”), two scooters (“up to 30 miles an hour”) and four motorcycles.

Then there’s a list of all the things his head has smashed into: Four windshields, three steering wheels, two dashboards, and — of course, the one that started it all — “a closed canvas Volkwagen sun roof.”

The list he confronts every day is spread out across the kitchen counter of his uncle’s Sarasota condo. These are the prescription drugs whose plastic capsules are tightly clustered and stacked like a tiny, futuristic, metropolitan skyline:

Keppra, Depakote, Risperdal, Carbidopa, Topamax, Termazepan. Not to mention the occasional aspirin. He carries a timer that cues him to take his next dose of medication.

At age 48, Minturn is convinced all those chemicals are pretty much worthless when it comes to neutralizing the epileptic seizures that have been knocking him off his feet since he was a teenager.

“They’re like a placebo; they don’t do any good anymore. My body’s been on them for so long it would probably kill me to go off it now,” he says in a measured but lucid monotone. “It’d be like an alcoholic coming off alcohol. I don’t have a choice at this point.”

And yet, as the planet orbits into another new year, the one-time community activist manages to hoist a labored smile up the flagpole because technology is one thing in which he still has faith.

Minturn reaches for the pendant around his neck and offers it for inspection, like a jewel. “This is my magnet,” he says.

Its other half, a transmitter implanted in his chest, produces the sort of eye-opening, pain-free results with which only a weary epileptic such as Minturn can take issue. His impatience notwithstanding, Minturn suspects these are critical tools for picking the locks to ancient mysteries in the inner sanctum.

And if they realize their potential, then anything is possible.

From the beginning

Ho Chi Minh City was Saigon, Jim Croce scored a hit from the grave with “Time in a Bottle” and Redd Foxx was still clutching his heart and faking “the big one” on “Sanford & Son” when the two-car collision on Ringling Boulevard at U.S. 301 demolished Minturn’s future less than a week shy of his 16th birthday.

He was a backseat passenger in a northbound VW Beetle when, on Nov. 18, 1974, an 18-year-old southbound motorist turning east onto Ringling pulled into oncoming traffic. Elizabeth Toole, a 15-year-old friend riding shotgun, died in the collision.

Minturn, who suffered his first seizure while in a subsequent coma, spent a month in the hospital and underwent physical therapy for nearly a year. But the full scope of his brain injuries would manifest in violent increments over the years.

With Minturn commanding either a car or a bicycle, 10 more accidents — all seizure-induced — would follow, producing injuries to his spleen, lungs, ribs and other bones. Which, in turn, begat yet another long list — of hospitals:

Shands Hospital in Gainesville, Sarasota Memorial, Duke University Medical Center, Tampa General Hospital, Manatee Memorial Hospital and Blake Medical Center in Bradenton. A couple of intentional prescription drug overdoses landed him in psychiatric care at the old Sarasota Palms Hospital and at a now-defunct, state-run mental facility in Arcadia.

From Dilantin to biofeedback, Minturn’s struggle to regain independence generated diminishing returns. Claiming a genius-level 140 IQ, the unemployable young man spent nine years in public housing and became a regular fare in the Sarasota County Area Transit system.

But when, in 1993, the county considered slashing 0,000 from its SCAT budget by scaling back services, the native son decided to leave the margins. He convinced commissioners to change their minds by collecting the signatures of 1,266 clients, businessmen and potentially angry voters.

“This is my town. This is the town I was born and raised in,” he recalls, “and I didn’t see anyone else standing up for the bus company, which was my sole source of transportation. Somebody had to do something.”

But with epilepsy, no victory is fully complete.

Several years later, Minturn was banned from boarding the buses he had lobbied to keep running.

“Our drivers were reporting some behavior issues,” says county public works spokesman Bob Reddy, alluding to allegations of Minturn’s attempts to collect fares from passengers, and a refusal to obey drivers’ orders.

But the banishment was made without a full comprehension of Minturn’s medical history, Reddy says. “Once those issues became apparent, we re-evaluated our position and he was back on the bus immediately.”

Bedeviled by short-term memory loss, Minturn says he doesn’t remember being barred from the SCAT buses, nor does he dispute it. “It may have happened that way,” he says. “I’ve been on so many damned medicines, anything’s possible.”

A pulse generator

There are, according to the Epilepsy Foundation of America, nearly 3 million people — or roughly 1 percent of the U.S. population — who suffer from epileptic seizures.

Counting 181,000 new diagnoses each year, epilepsy claims twice as many patients as multiple sclerosis, cerebral palsy, muscular dystrophy and cystic fibrosis combined. The Journal of Clinical Psychiatry reported in 2002 how the affliction tallies .5 billion each year in medical bills, lost income, and production.

But lately, injected into this morass of misfiring neurons — those spidery cells endlessly lighting up the brain’s switchboard with dispatches called synapses — comes a technology designed to flip a kill switch whenever the chatter loses traction and begins to drive its host into seizures, convulsions or unconsciousness.

It’s called the Vagus Nerve Stimulator, a pulse generator which, after being implanted into the chest, can short-circuit an epileptic episode with electric bursts of its own.

Roughly the size of a wristwatch face, the VNS fires signals along fine wires into what scientists have begun calling the body’s “information superhighway” — the Vagus nerve.

Among other things, this nerve forms a pathway into those parts of the brain associated with seizures, mood disorders and the regulation of critical neurotransmitters.

The implant is programmed for constant pulsing. But an epileptic who can feel the imminent onset of a seizure, called an aura, can activate an extra dosage of electricity by simply waving a special magnet above the VNS.

“I wouldn’t call it a cure. Cures are few and far between in epilepsy,” says Dr. William Tatum, section chief of neurology at Tampa General Hospital and a professor of clinical neurology at the University of South Florida. “Cures imply that we’ve solved the problem. We prefer to talk about ‘control.’

“That said, I’ve had patients who’ve experienced a 90 to 95 percent seizure reduction. That’s far above the norm, but this is what we’ve seen.”

At USF’s College of Medicine, professor of neurology and pediatrics Dr. Maria Gieron defines success with VNS as epileptics who experience a 50 percent reduction in seizures. Of her 30 or so VNS patients, Gieron estimates 30 to 40 percent are success stories.

“We have had some who’ve been completely seizure-free. But,” she adds, “we also have patients who’ve become seizure-free with drug therapy too.”

Developed by a Houston company called Cyberonics Inc., VNS therapy gained U.S. Food and Drug Administration approval in 1997. Some 30,000 people around the world have undergone these outpatient surgeries. The tab can reach up to ,000, but the Cyberonics Web site says most third-party payers offer reimbursements.

Since its epilepsy breakthrough, VNS has been approved by the FDA for depression therapy. Research is continuing into applications for anxiety, Alzheimer’s disease, obesity, bulimia, Parkinson’s disease and chronic migraine headaches.

In a November report, Cyberonics said anticipated sales of .9 million for the six months ending in October represent a 21 percent growth rate over the same period in 2005.

“This is a very exciting field,” says Tampa General’s Tatum. “In terms of its potential, we’ve barely scratched the surface.”

‘My brain’s still functioning’

Since receiving his VNS implant two years ago, Minturn has been diagnosed with Parkinson’s disease. His left hand trembles in tell-tale rhythms.

Used to be, when he wasn’t having a seizure, strangers would look at him and be none the wiser. Now this. Another brick in the wall.

Every time he passes Ringling and 301, he thinks about that night.

He wonders whatever happened to the survivors, and his other friends from high school.

“People see your seizures and it’s an immediate throw-off,” Minturn says. “It’s like, ‘This guy’s spastic, and we don’t want to have anything to do with it.’ They don’t know how to act, and they don’t want to offend you.

“But, you know, I’m still here, and my brain’s still functioning.”

These days, social interaction is more or less confined to his uncle, Bill, who also carries a seizure-busting magnet just in case. Minturn’s auras and seizures have fallen off by anywhere from 75 to 90 percent since he got his VNS from Sarasota neurologist Dr. Scott Franczek.

Not so long ago, epilepsy was perceived as demonic possession with scriptural roots in the New Testament. Today, almost like magic, Minturn or Uncle Bill can defuse an aura most of the time with a wave of the hand.

So it speaks to the expectations raised by the technology that Minturn’s response to VNS therapy isn’t what he’d hoped it would be.

Two years after the implant, the seizure activity endures, which means his most basic aspirations for independent mobility — riding a bike — remain elusive.

Just which of the old barriers will buckle beneath the weight of science in 2007 is anyone’s guess. Minturn approaches the new year in customary fashion, from the outside looking in, nose pressed against the glass of freedoms most people take for granted.

“I’d like to see the Appalachian Trail again,” he says. “I went there before the accident, in summer camp. I hiked it from Georgia to Fontana Dam (in North Carolina). It took two summers. But it was a lot of fun.”
Epilepsy

A condition in which a person has a seizure. A seizure is a change in sensation, awareness or behavior brought about by abnormal discharges in neurons in the brain. Normally, neurons carrying electrical impulses form a network allowing communication between the brain and the rest of the body. Neurons “fire,” or send electrical impulses toward surrounding cells, stimulating neighboring cells to fire.

In people with epilepsy, too many neurons fire at one time, causing an “electrical storm” within the brain.
There are more than 20 different types of seizures.
Symptoms include:

Short periods of blackout or confused memory.
Occasional “fainting spells” in which bladder or bowel control is lost, followed by extreme fatigue.
Episodes of blank staring in children.
Brief periods of no response to questions or instructions.
Sudden falls in a child for no apparent reason.
Episodes of blinking or chewing at inappropriate times.
A convulsion with or without a fever.

— Source: Epilepsy Foundation

Local epilepsy networks:

Epilepsy Services of Southwest Florida,
1900 Main St., Suite 303, Sarasota; 953-5988.

Charlotte County Epilepsy Support Group,
370 Lasayette Ave., Port Charlotte; 629-3309.

Information on the Web

www.epilepsyfoundation.org

www.ninds.nih.gov/disorders/epilepsy

www.aesnet.org

www.cdc.gov/epilepsy

www.epilepsyinstitute.org

www.datasync.com/~josw/epilepsy.htm

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