Rare stroke doesn't keep Larry Hogestyn from returning to hunting Leo Roth Staff writer

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1 October 17, 2010 Rochester Democrat and Chronicle Rare stroke doesn't keep Larry Hogestyn from returning to hunting Leo Roth Staff writer "Faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1, a sign displayed in Larry and Pam Hogestyn's home. ONTARIO Larry Hogestyn welcom ed his guest by blinking his eyelids, exposing his friendly, cool blue eyes. If he could m ove his legs and arm s, he would've risen from his recliner and extended a strong handshake. If he could speak, the avid outdoorsman would've told the stories behind the three trophy whitetails hanging on a wall in the great room of the com fortable country home he shares in Wayne County with Pam, his wife of 29 years. He would've boasted about the 25-pound lake trout one of his three sons caught to win a fishing derby on Lake Ontario. Or gone to the gun cabinet to show off the exquisite rifle he handcrafted from a piece of cherry harvested from the woods at the fam ily's hunting cam p in Andover. Instead, Larry Hogestyn sat, a purring cat on his lap, and blinked. Eight years ago, Hogestyn (pronounced HOAG-asteen) suffered a rare brainstem stroke that robbed him of nearly all of his m otor skills in essence, paralyzing him head to toe but left his m ind intact. The dreaded condition called locked-in syndrom e was the subject of the 1997 internationally acclaimed m em oir by French journalist Jean-Dom inique Bauby entitled The Diving Bell and the Butterfly. Hogestyn can m ove his eyes vertically; his head left and right slightly, and can bite up and down. But that is it. He can't walk, talk or swallow, needing a feeding tube for nutrition. He is a prisoner of his now 55-year-old body. But like Bauby, Larry Hogestyn flies outside his "diving bell.'' He has persevered under the m ost challenging of circum stances, his story a testam ent to the hum an spirit, a fam ily's unconditional love and the power of faith.

2 Behind his blinking eyes is the sam e intelligent individual who as a xerographic engineer at Xerox was credited with eight patents. There is the same creative, adventurous soul who crafted furniture and boats, built a cabin in the Southern Tier and m ade a gyroplane to fly, who raced cars at Spencer Speedway and loved deep-sea fishing. The sam e caring husband and father. The sam e passionate hunter. Thanks to adaptive equipm ent and his wife's unyielding help, Larry was anticipating another autum n in the woods as archery season opened Saturday for deer and black bear. Since taking up hunting again in 2006, he has harvested five deer by bow and one by gun. "Getting a deer on the first year with adaptive equipm ent was an awesom e feat and was proof that I was back!" Hogestyn wrote via e-m ail in response to a question. "The proof is in the pudding: five bow deer and one with a gun. Who knows, m aybe a bear this year." Larry com m unicates by opening his eyes to acknowledge "yes" for the correct letter when people recite the alphabet, spelling out words. But he can also type on his com puter, aiming an infrared dot from his glasses to m ove a m ouse cursor on a virtual keyboard and biting down on a medicine dropper (a sip-and-puff device Hogestyn m odified for himself) to click. W ord recognition software autom atically types out words he uses frequently. Like "hunting." And "hope." And "God." Fighting back Only 10 percent of all stroke victims suffer locked-in syndrom e and only 5 percent survive. Strong Mem orial Hospital sees only one or two cases a year, said Dr. Robert Holloway, professor of neurology at the University of Rochester Medical Center. "It's one of the feared topics concerning strokes," Holloway said. "It's the part of the brain (linking with the spinal cord) that controls all m otor m ovem ents except vertical m ovem ent of the eyes. As a result, you essentially are 'locked in' your body." With a brain that's cognitively fully functional. Larry Hogestyn suffered his stroke at hom e in the m iddle of the night. His kids found him on the floor. As a fam ily, the Hogestyns had talked about "What if?" Larry's will stated no life support m easures in the event of a catastrophic m edical em ergency. But because he was alert and his doctors could com m unicate to him his condition and slim prognosis for a full recovery, this quality of life decision becam e his. He blinked his intentions. "As active as Larry was, nobody thought he'd want to live but when confronted with that situation, and because he was intellectually all there, he wanted to live and there was no doubt about that," Pam Hogestyn, 54, said. As a cancer survivor, Larry's drive to recover from his new health setback was indisputable. He underwent two years of intense rehabilitation. He got off a ventilator. He worked hard, prayed harder, but there was little change. "I once thought I could beat this stroke because I beat cancer boy was I wrong," wrote Hogestyn, who last year suffered a second, sm aller stroke. "I've been hospitalized so m any times and have m any medical issues that nobody should have."

3 What does his daily existence feel like? "Your free will is taken away and you feel like a caged in animal," Hogestyn wrote. "Just wanting to go on your com puter becom es a big ordeal. And you wind up in bed; not a good thing!" What is good and what he's so thankful for, Larry said, is being able to live in his hom e and not a nursing facility. Pam, who provides 24/7 care supported by long-term disability insurance, is proof there are saints on earth. She works part time one day a week at a pediatric dentist's office and fam ily m em bers give her breaks. But the majority of the time it is her and Larry. "I just do it," Pam said. "It's our (Christian) faith. God just carries m e through, day after day. I definitely have an easy time with care giving. It's not hard for m e and I know everybody can't be like that. "I also take m y m arriage vows very seriously: 'In sickness and in health, until death do us part.'" She grew up in Phelps, he in Webster. They m et in church. "We're soul m ates," Pam said as she nudged Larry's arm and sm iled. As is often the case with life-changing disabilities, Hogestyn's life changed when acceptance of his condition was followed by adaptation and m aking life as good as possible. Developing new com puter skills led him to write a book that explores one's readiness for death and his spirituality. It is called Are You Ready? He watches m ovies, uses the Internet, e-m ails friends, writes, and m aintains a website ( any-questions.info/) where he helps others cope with what life dishes out. And he dream s. "The brainstem stroke recovery is very slow and we just cam e to the conclusion that it wasn't going to happen for Larry," Pam said. "But he has still m anaged to do a lot of am azing things. Just having the com puter has opened up the outside world to him." Boy has it. Passion to hunt One day, without his wife knowing, Larry did a Google search for "Adaptive Hunting" and clicked away a large order of specialized clothing and gear. When it arrived at the house, Pam 's jaw dropped. But she rem em bered Larry's first question after he came to after his stroke. "He asked, 'Will I be able to hunt again?'" Pam said. "For Larry, the outdoors was everything and to have that taken away was extremely difficult. I wasn't thinking about it as m uch as he was but it obviously clicked in his head that m aybe it was possible to hunt again. When he found out there was all this equipment available, that's all it took." Along with the determ ination of husband and wife cam e a big helping hand from George Bolender, founder of New York Outdoors Unlim ited, a Rochester-based organization that assists disabled outdoorsm en. It turned out Bolender, who was left a quadriplegic from a 1991 auto accident, lived five m inutes away. Bolender arrived in his own wheelchair and began helping Larry set up his gear. "Larry is the m ost extrem e case I've seen since I started adaptive hunting back in the 1990s," Bolender said.

4 "To have that m uch drive to want to hunt again is truly inspiring. I know what it takes for m e to get out of bed each day and to take it up that m uch more was am azing to m e." Even m ore im pressive was tasting instant success. Hunting from a ground blind with a m odified perm it-issued crossbow attached to his wheelchair, Larry harvested a big doe on his first adaptive hunt with Pam nearby. "I did a dance in the woods," said Pam, who tracked the animal and wound up field dressing her first deer, m uch to Larry's amusement. "He left m e instructions but it took m e over an hour to do it which is ludicrous." Not being a hunter herself, that's called love. Over the years, the couple has gotten their routine down to a science with m any equipm ent upgrades. Larry now has a $20,000 all-terrain wheelchair to m ove about his cam p in, his sons constructed a perm anent heated blind, and to help his ailing eyesight, he now aims through a cam era viewfinder rigged to his bow and gun scope. Vertical and horizontal adjustm ents are m ade with head m ovem ents. In his blind, Larry Hogestyn experiences unlocked syndrome. He is free of his cage. He's a hunter in his elem ent, pursuing venison to feed his fam ily. In touch again with his instincts. Happy. "I get in tune with the woods and I listen for steps m ade by animals and try to guess what they are as they approach," Larry wrote. "I get ready for a deer if it sounds like one. Som etimes I prefer to just be listening if the conditions are right." Tinkering with his gear, from m odifying his bow and gun to use his medicine dropper for a trigger bite switch or rigging up a chin-activated bleat call, brings out the engineer in him and sends Pam into action with duct tape and epoxy. "Pam takes all credit for m y success," Larry wrote. "She is a real gem. And George and his friends, they fully set m e up for hunting. I highly recom m end them. I am so glad we m et." The m odest Bolender refused credit. "It was Larry's drive that did it," he said. "And Pam. Without her, this doesn't happen. She's som ething else." A life worth living The UR Medical Center's Holloway said som e of his biggest surprises in m edicine evolve from the resiliency of stroke patients who have recovered to live lives that are enjoyable and m eaningful. "It's the hum an side of this that's rem arkable, what people, under such dire circum stances, with the help of technology and support from their fam ily, friends and m edical team can accom plish," he said. But while people can do rem arkable things when challenged, every patient and family m ust ask, "Do I want the chance to try and adapt?" Holloway said. It can be a question of having surgery or not. Undergoing rehabilitation or not. Gauging one's quality of life against choosing life or death. Larry Hogestyn said being alive in m ind only is worth it. His determ ination to live life as full as he can m ake it doesn't surprise his sons, Dan, 28, who is in the Arm y; David, 26, a forester with Gutchess Lum ber of Cortland; and Jonathan, 24, who works for Rochester Glass.

5 "He's a very intelligent person who doesn't give up easily," David Hogestyn said. "He was always building som ething new or m aking som ething better." In the eight years since his stroke, Larry Hogestyn has celebrated eight years of birthdays and holidays with loved ones and watched his sons grow into successful m en. Mem ories from a pre-stroke, robust life have sustained him; and he's m ade new m em ories. He's still the fam ily patriarch, the one to go to for answers about fixing cars and hom e repairs and setting up a tree stand. He's still dad. "He's still an important person in our lives," David said. "Yeah, he can't walk or do the things he once did, but he's still able to do a lot, m aybe not physically but certainly m entally. Deer hunting is a physical task, but we can help with that part and he can still do it. "I know he's appreciative of his fam ily and m y m om and that he can do things most stroke patients can't because he's home. He's really m ade som e am azing things happen." As a father. As a husband. As a hunter.