Ride For Life

By ALPHA HUSTED
Jamestown, Post Journal

FALCONER, NY — For Keven Hulings, the number four is special.

The same number once appeared on the jersey of baseball’s immortal Lou Gehrig — Hulings’ hero.

A victim of Amyotrophic Lateral Sclerosis, the New York Yankees hitter died in 1941 after a two-year battle with ALS — known since as Lou Gehrig’s Disease.

ALS, a disease of the nervous system, attacks muscle-controlling nerves. Eventually, all muscles — with the exception of involuntary muscles such as those in eyelids — are destroyed, and paralysis follows.

Today, Hulings is chalking up a 15th year of his own war against ALS.

The disease has wasted his muscles, wiped out his voice and immobilized his body. Yet, his mind races at the speed of sound, and unmistakable glints of humor light up his eyes.

When his voice succumbed to the disease, Hulings turned to technology.

Now, he once again ‘‘talks’’ and argues issues.

Hulings likes nothing better than debates, especially when he proves his challengers wrong. Offering no quarter to the lethal enemy stalking him, he lives with all the purpose and passion of that South Side boy who never missed an after-school baseball game, or a chance to cheer on his beloved Yankees.

Hulings also faces another challenge. About three years ago, he was diagnosed with diabetes, and daily insulin treatments were added to his regimen.

In April, Hulings competed in the two-day segment of the ninth annual Ride For Life fund-raiser for ALS research and patient services.

The wheelchair event in New York City is sponsored by RFL, Columbia University and the Yankees.

Along the RFL route, Hulings saw Gehrig’s birthplace, a home on 102nd Avenue, and visited Yankees Stadium.

‘‘It was a great time,’’ Hulings said, ‘‘except, the Yankees were beaten by the Toronto Blue Jays.’’

Hulings collected $1,500 in pledges for the fund-raiser, all of which he solicited through letters to businesses and individuals. With his cousin, Howard Hulings, and nurses, Jennifer Davidson and Patty Zdunski, supplying ‘‘push energy,’’ Hulings’ wheelchair was among the first to cross the Brooklyn Bridge and the finish line.

Several days ago, a television crew crowded into Hulings’ apartment, and Buffalo’s Rich Kellman interviewed his host. The film will be featured as part of the 2006 Buffalo Multiple Distrophy telethon, an annual Labor Day weekend event.

None of this would be possible, without the cadre of nurses who care for him around the clock, said Hulings.

‘‘I can be difficult. At times frustrations get to me ... sometimes, my leg or arm itches, and I can’t get a message out to them to take care of it fast enough,’’ he said. ‘‘But, we have bonded. We are family. We argue, we celebrate and, at times we commiserate.’’

Two of the care-givers who have been with Hulings the longest, are Jennifer and Jean Saylor.

The group, said Jean, ‘‘is a clan of individualists that only God could have put together ... We’ve become an integral part of Keven’s life. What’s important to him has become just as important to us.’’

Jennifer agreed. In addition to tending to her patient, administering medications, relieving itches and other annoyances, and monitoring the yards of tubing that crawl over and around his body, the nurse assists him in many other ways.

For example, when Hulings was not up to taking part in this year’s Billy Mead 5K run at Dunkirk, Jennifer entered the event as a representative of the Hulings ALS camp.

Patty said Hulings is ‘‘amazing ... very forceful.’’

Her involvement as his care-giver, she said, has been a life-changing experience. Other members of the group are Pamela Wesley, and Bruce Berry, who reinforces Hulings’ male perspectives.

Hulings was stricken with ALS in 1991. The former Cummins, Inc. employee was 35. He walked the last time in 1992, and his arms gave out two years later. A ventilator has taken over his breathing.

Does he ever despair? Does he ever ask, why me?

Pressing his chin against a device that guides a mouse from letter to letter, Hulings rapidly types responses, word by word, on the screen of a machine, called a DynaVox. Once messages are complete, they are then released by a computer ‘‘voice.’’

Hulings says it’s all a matter of a commitment to life. Not just to live, but to accomplish something.

‘‘ALS can’t take my mind, and I won’t let it take my spirit,’’ he said. ‘‘As long as I have those two things, I figure I have a life. ‘‘I’ve fought hard to live, and it’s well worth it even though I get frustrated at times — like when I want to hug my niece or nephew and I can’t. I hate it when I’m stymied by this damn disease.

‘‘I used to chase women — unfortunately, I didn’t run fast enough. I used to drink too much, and I played hard,’’ he said, with that same glint in his eyes. ‘‘Now my life has meaning. I have purpose, and I get to be Uncle Lou Gehrig’s right-hand man with a mission: to help people who’ve been hit by ALS or other diseases that wipe out their mobility.’’

Katherine Hulings says her son has ‘‘the tenacity of steel ... Keven never gives in. Once he makes up his mind, no one’s going to budge him, no matter what.

‘‘In 1997,’’ she recalls, ‘‘doctors told Keven he would die within a year or two if he left the hospital. They said he’d have to accept the fact he’d be hospitalized the rest of his life.’’

For months, Hulings refused to buy that prognosis. He could only exist in a hospital, he argued. He wanted to live. He wanted to go home. Thanks to family and friends an addition was added to his parents’ mobile home on Elmwood Avenue. Finally, with the help of a local physician, the rebellious patient was — as he puts it — ‘‘sprung’’ from WCA Hospital.

Nine years later, he’s still beating the odds.

‘‘He wasn’t supposed to live two years,’’ Mrs. Hulings said, ‘‘yet, here he is, still with us.’’

Leaving the hospital was a defining moment for the ALS patient. Battle lines were drawn. While the disease might take him down, Hulings would not allow it to take him out.

After settling in his apartment, he marshaled family members and friends, old buddies like the Kilmartin brothers — Bill, Kelly, and Sean.

‘‘They’re my brothers,’’ said Hulings, ‘‘even if they are Red Sox fans.’’

Months later, the Friends of HUGO — an organization focused on fund raising — and the HUGO Fund were founded. The fund continues to provide assistance to others with physical handicaps who wish to remain in homes.

In the spring of 1997, the HUGO Fund became part of the Chautauqua Region Community Foundation. Later, the HUGO Loan Closet was established and housed in space donated by Falconer’s J.P. Diamond Co. Available at the Closet are donated items such as walkers, wheelchairs, furnishings and many other items.

Through HUGO, those with physical disabilities also find assistance in cutting red tape and paperwork required to arrange home environments. In addition, a number of people are guided to appropriate agencies for assistance, such as the Veterans Administration, Medicare, etc. The organization also works toward legislative changes that will promote home care.

Each year, funds are made available for one to three college scholarships. Eligible to compete are high school seniors who wish to pursue professions that would enable them to help the physically challenged, and, who attend Falconer, Southwestern, Maple Grove, Jamestown and Frewsburg schools.

Fund-raisers, arranged by The Friends of HUGO, keep members more than busy, said Bill Kilmartin.

‘‘Since HUGO was organized, we’ve raised a total of about $50,000 at golf tournaments, alone,’’ he said.

Kilmartin describes Hulings as ‘‘a die-hard Yankees fan, who’s been giving me the business about the Red Sox, since high school days.’’

But, in 2004, when the Sox won their first World Series in 86 years, Kilmartin said, ‘‘Keven was the first person to share the big moment with me.’’

Robert Terreberry, a close friend of Hulings, was the first chairman of The Friends of HUGO, and headed the organization for some time.

‘‘Keven has tremendous fortitude and an uncanny ability to attract caring people to the HUGO cause,’’ Terreberry said. ‘‘In turn, he’s a very caring individual, the first to contact his friends on special occasions. When I came up a winner in a recent Chautauqua Lake Idol competition at Bemus Point, there was an e-mail from Keven, minutes after I returned home.’’

Like Hulings, Terreberry is convinced home environment should be an option for the handicapped.

‘‘It ensures a quality of life that just can’t be provided in an institutional setting. Because of that, most patients at home have more meaningful and longer lives. Keven’s case proves that. Aside from all the human factors, staying home is less costly.’’

Heading the HUGO Fund are: Harriet Willett, chairman, and Hulings founder. Others include: Kelly Kilmartin, treasurer; Robert Terreberry, scholarships; and, Jennifer Davidson, secretary and Loan Closet administrator.

? ? ?

Hugo is a nickname Hulings was given by a friend, back in the days, he said, when ‘‘all the guys’’ worked extra hours all week, so they could catch their favorite football games on weekends. The name also is an acronym for ‘‘Humans Under God’s Oddities,’’ related to people with debilitating health problems.

Hulings said he’s looking forward to busy days ahead. For one thing, he’s deeply involved in the Ride For Life’s efforts to come up with prototype housing for patients with ALS.

‘‘The medical gurus,’’ he said, ‘‘are trying to put all ALS patients in nursing homes, instead of places that would meet our needs. ALS does not affect the mind.

‘‘We have a lot to offer in that respect. What we need is a type of group home that provides private space as well as opportunities to meet and compare notes.

‘‘My dream,’’ he said, ‘‘would be to have a ‘HUGO Home’ in our county.’’

Another priority, Hulings said, is spurring interest in contributions for Project ALS Research.

‘‘It would be just great if every person in the United States would donate $1 to the HUGO Fund for research, and if every person in Chautauqua County would give the same amount, we’d have about $140,000 as a starter.’’

Some time ago, Hulings programmed the DynaVox, and through use of an infra-red connection, and an ‘‘educated chin,’’ he has become a ‘‘computer whiz,’’ said Jennifer.

‘‘The programming took a long time,’’ Hulings said. ‘‘I lost track after 5,000 hours.’’

With that task finished, Hulings plans to become a Web master, and to update the HUGO Web page.

Meanwhile, he cherishes his latest memento — a special commemorative bat presented to him by Yankees owner George Steinbrenner.

‘‘There’s only one other like it,’’ Hulings said, ‘‘and, Steinbrenner has that one.’’

Hulings will never swing or even lift that bat. But, he’s hoping for a winning season this year — in terms of ALS donations to The HUGO Fund.