'There is life on life support' in the great outdoors

By SUSAN COCKING The Miami HeraldPublished: June 27th, 2007 11:30 AM




Matt White can neither breathe nor eat on his own. His air comes from a ventilator and food through a tube in his stomach. He can't swallow, so his wife, Shartrina, puts a suction tube in his mouth every couple of minutes.
White, a former golfer (9 handicap) and college track star, no longer can move his arms, hands, fingers or toes. His speech is slow and garbled, so Shartrina translates.

But White _ diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's Disease seven years ago - goes fishing on his 23-foot boat. He attends the theater and sporting events, and reads and writes. He and Shartrina, both 40, recently celebrated their first anniversary.

White insists it's great to be alive.

"There is life on life support," White said, with Shartrina translating. "I've caught everything but a tarpon and a shark."

The key to serenity, White said - when you can't scratch an itch, hug your wife or attend to your own personal hygiene - is to focus on the things you can do.

"I make a point not to miss things I gave up," he said. "I just had to deal with what I could do and forget about what I couldn't do."

Since retiring to southwest Florida from Indianapolis in 2004, White spends a lot of time fishing in Charlotte Harbor and on the dock behind his five-bedroom Cape Haze home, with the help of Shartrina and neighbor Richard Leydon.

The dock is equipped with a personal watercraft davit that lowers White and his 600-pound wheelchair onto the wide-open deck of his Carolina Skiff. The boat manufacturer modified the console and transom to accommodate the wheelchair and the batteries and spare parts for his ventilator and suction machine.

On board are the fisherman's usual hodgepodge of rods, reels and tackle boxes. A livewell in the transom holds shrimp, crabs and pinfish.

REAL COOL REEL

Because White cannot use his hands, he came up with an alternative for reeling in fish - a fiber-optic laser module attached to his sunglasses that engages the electric reel on his seven-foot spinning rod when he blinks. The rod rests in a holder built into his wheelchair.

"He used to move two fingers, so we could put a switch to that, but he lost that last week," Shartrina said.

On an outing last week in Charlotte Harbor, Leydon motored the skiff out to Cayo Palau and anchored in the shallows. Shartrina baited White's hook with a live shrimp and cast it. The fishing line had a Styrofoam bobber so White could see the strike.

Less than a minute after Shartrina cast, the bobber disappeared beneath the surface. White blinked to engage the reel and brought a struggling catfish estimated at 10 pounds to boatside. Leyden carefully removed the hook and released the fish.

"How many paralyzed people have caught a catfish?" White said.

He reeled in a couple more that day, along with a small spotted sea trout. An attempt at tarpon and snook near an old railway bridge was unsuccessful. But White insisted he has caught snook, redfish and kingfish on previous trips.

"Matt has taught me a lot about fishing," Shartrina said.

The couple first met on a blind date when they were 15 and living outside Indianapolis. After high school, they went their separate ways - Matt to Butler University in Indianapolis, where he majored in radio and television; Shartrina to Purdue for a degree in education.

White graduated in 1989 and became general sales manager for an Indianapolis radio station. His income enabled him to join a country club and pursue a lifelong passion for golf. He partied with his college fraternity brothers and followed Pacers basketball.

About eight years ago, White noticed weakness in his hands. His golf game went from a 9 handicap to a 15. He ran a minimarathon in Indianapolis and felt "wiped out" afterward.

His uncle, Dr. Marv Eastlund, noticed the problem and encouraged him to see a neurologist. In 2000, the diagnosis came: Lou Gehrig's disease, an incurable disorder affecting the nervous system that's usually fatal within two to five years.

White's response: total shock, followed by a plan to go on a worldwide golfing odyssey with his closest friends while he could still swing a club.

They played St. Andrews, Pebble Beach, and even Augusta National.

"I was able to say goodbye to golf in a really nice way," White said.

MOVING TO FLORIDA

As the disease progressed, White was forced to quit his radio job. He relocated to southwest Florida to be near his parents. Soon he was confined to a wheelchair with a feeding tube.

"He really planned to come down here to die," Shartrina said.

Three years ago, during a routine hospital visit, physicians made a mistake while inserting White's feeding tube and he stopped breathing. He was put on a ventilator - against his wishes. But during six months of recuperation at home, he took up fishing from his backyard dock and got reacquainted after 20 years with Shartrina, who was director of educational programs at Chicago's Rush Neuro-Behavioral Center.

Shartrina traveled to Naples on business, and the friend who introduced her to White in high school suggested she visit him. Romance blossomed and the couple married in May 2006. They share their home with White's parents and frequent out-of-town guests - mostly White's fraternity brothers and their families.

Besides fishing, White spends his days writing on his computer - equipped with a laser pointer - and raising money through his Matt White Cure ALS Foundation (www.cureALS.org). He said he has raised about $400,000.

On the introduction to his Website, he writes: "By sharing the events of my life and my daily struggle to live with ALS, you will learn how I do it, see the fun and interesting things someone in a wheelchair and on life support can do, and maybe you'll find a way to try or do something you've never thought possible."

Oh yeah - White's other avocation? Inspiring people.

http://www.thenewstribune.com/tacoma...ory/97444.html

Bench dedicated in memory of teacher
By KIM DUNNE-Telegram Staff Writer
Published: Wednesday, June 27, 2007 11:56 AM CDT
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HERKIMER - It's another fitting tribute to the Richfield Springs teacher who touched so many lives.

Ellen Beirne, a former member for the Herkimer County Humane Society board, will be remembered at the Society, as a bench was placed and dedicated in her honor on Tuesday morning.

Beirne retired in 2001 as a Richfield Springs Central School Teacher after nearly 30 years. She was diagnosed with Amyotrophic Lateral Sclerosis, better known as Lou Gehrig's Disease, in 2005. Her battle ended earlier this year, and since then friends and family have been finding ways to keep her memory alive through the Humane Society and the school.


This year's Mutt Strutt held at Herkimer County Community College was dedicated to her.

The bench, which now sits by the entrance to the Humane Society, has a plaque on it that reads ‘In loving memory of a friend and teacher, Ellen Beirne, from your R.S.C.S. Family.'

The bench comes from the teachers at the school, through many fund-raisers that were held.



“When (Beirne) retired she donated over 300 pieces of pet food and supplies to the humane society,” Sue Gokey said. “So now every May we're gong to hold a pet food drive in her memory.”

Mary Weingates, a teacher at Richfield Springs, said every year different fund-raisers will be held to remember the legacy that Beirne left behind.

“There are just so many causes that are worth giving some time and energy towards,” Weingates said. “I think (Beirne) helped us realize that.”



Another bench has been dedicated at the Burnett Park Zoo in Syracuse in Beirne's memory. That comes from the Retired Teachers Association.

ALS is a motor neuron disease in which degeneration in the brain and spinal cord cause muscle weakness and atrophy and eventually paralysis.

According to the ALS Association, the disease generally begins with weakness in the hands, arms or legs or difficulty swallowing or speaking. As the disease progresses, the weakness increases until the patient becomes paralyzed. Eventually, the muscles that control swallowing and breathing become paralyzed as well.



Despite great strides in research throughout the past 10 years, doctors still know very little about the disease and its cause, and have few choices in treating it. That's why Weingates said many of the fund-raising efforts still in place will go to ALS research within the Multiple Sclerosis Association.

The ALS Association estimates there are currently about 30,000 people in the United States with the disease.

The disease generally strikes people between age 40 and 70, but cannot be linked with any genetic or lifestyle factors, race or ethnicity. It is a disease that can strike anyone, anywhere.
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