NEVER A BAD DAY
West Linn resident Brian Hackney enjoys helping others. So, when he was diagnosed with ALS, his friends and family formed a large help group
By Nicole DeCosta

The West Linn Tidings, Jan 31, 2008

Brian Hackney, 51, of West Linn was diagnosed with ALS a year ago. Since then, a group of friends, family and community members created a system to help Hackney and his wife and two daughters in this time.

Vern Uyetake / West Linn Tidings
Brian Hackney moves his head slightly to the left, just slightly. The cursor on the computer screen on his laptop in front of him also moves to the left.

The West Linn resident then moves slightly to the right, and the cursor follows. A reflector on his baseball hat is read by a camera positioned on top of his computer screen.

Voice recognition software allows him to speak into a microphone the words he’d like typed.

“Is that cool or what?” Hackney said. “But, there’s only so much time you can spend on the computer before you go bonkers. But, I can’t turn the page in a book anymore.”

Now confined to a wheelchair, Hackney, 51, who was diagnosed with ALS a year ago, remains the same loving father of two teenage girls; husband to his wife Julie; and enthusiast of cars, military museums and LP rock and roll listening parties with friends.

He jokes that his retirement last month from Codel, a door distribution company, was “earlier than expected.”

He taught his 17-year-old daughter, Megan, how to drive last summer, as she had to take him to work each day.

Hackney took his family to England last summer and walked the country with a cane, as his muscles were weakening.

By August he was in a wheelchair.

ALS — Amyotrophic lateral sclerosis — is a neurodegenerative disease that causes motor neurons to die, eliminating the ability of the brain to initiate and control muscle movement. It is also referred to as Lou Gehrig’s disease.

The average life expectancy of an ALS patient is between two and five years, while some live much longer.

“My limitations keep increasing,” Hackney said in his Georgian accent.

Friends and family describe the Hackneys as “involved” — always on the go, fund-raising, volunteering, coaching soccer.

So, when they heard of Hackney’s diagnosis, they wasted no time forming a team of about 60 people to help the family tackle this difficult time. And this number grows each day.

To the Hackney’s friends and family, ALS doesn’t spell out a scary disease, but rather “Altogether. Love. And Support.”



Embracing the disease

Debbie Blair and her husband, Kent, live two houses away from the Hackneys, and have for two decades. Blair said that when their children were young, the families spent time outdoors watching their children play and yelling “car” whenever a car would turn onto the street.

“It was Memorial Day last year (2007) when Kent and I were going for a walk,” Blair said, “and we saw Brian standing in his driveway with a brace on his arm. We made some joke about him doing too much yard work and he said, ‘no, I have ALS.’”

Blair said they felt as if they had been, “punched in the stomach.”

Those close to the Hackneys started a group based on the book by Cappy Capossela and Sheila Warnock called “Share the Care,” explaining how to organize a group of people to care for someone who is seriously ill.

In the middle of 2006, Hackney said he was having some trouble with his right hand, particularly his thumb. He visited his doctor and neurologists as his condition worsened.

“My voice changes throughout the day because I’m getting weaker,” Hackney said.

“Instead of having the attitude that you are dying from ALS, you are living with ALS,” Hackney said. “It’s a lot easier to get through the day if that’s how you look at it.”

Hackney is home most days. He looks forward to morning coffee with friends.

But, he can get stir crazy, as his wife, Julie Hackney, explained.

She said it is her goal to get her husband out of the house at least once a day.

“A home can get very small. When he sits in the house all day — he stares at the same four walls,” she said.

Julie, an instructional assistant in the life learning classroom at close-by Cedaroak Park Primary School, visits Hackney twice during her school day — once during morning snack time and then on her lunch break before she goes home at 3 p.m.

“You have to learn humility and modesty,” Hackney said. “When my day starts Julie helps me with exercises and everything you would expect in the bathroom, except it takes twice as long. I get my breakfast and medicine fed to me. And then she and the girls head to school. And here I am.”



Caregiver needs care

West Linn resident Moira Domann — a friend and neighbor of the Hackneys for nine years — serves as a coordinator of Hackney’s group. She is in charge of 18 “captains” who volunteer on a rotating weekly basis to help the Hackneys with errands, meals, yardwork and whatever else is needed.

The next week it’s someone else’s turn.

Between 20 and 40 “floaters” are people who can help with yard work, meals and fund-raising whenever appropriate, Hackney said.

“When you need help, you call,” Julie said. “You’re not burdening one person all the time. You may be the ‘captain’ this week, but then you’ll have … weeks off.”

Another group of individuals helps solely with fund-raising efforts to help defray the Hackneys medical expenses.

Hackney’s sister, Diane Diamantis, who lives in Florida, said he’s always been upbeat and outgoing. Diamantis is in charge of public relations surrounding the fund-raisers for Hackney.

Ken Keating of Southwest Portland met Hackney 20 years ago when he joined the Lower Columbia Canoe Club as a white water canoeist. They paddled together nearly every weekend until Hackney’s family started growing and paddling rapids transformed into changing diapers.

Keating said that he remembers the Hackneys providing years of support for a fellow rafting family when a father in his 50s was struck by illness.

“The caregiver now needs care,” Keating said.

Domann said she encourages the community to visit Hackney’s Web site — www.bhackney.com — and post comments as well as attend community fund-raisers.

And send prayers, she said.

West Linn resident Mair Blatt recently volunteered to help with these efforts. Last year she aided a West Linn teenager in raising money for her live liver transplant. Blatt signed Hackney’s guestbook and he wrote back, using his adapted computer.

“They are just like any of us, going about their life and a bomb lands in their laps that they didn’t see coming,” Blatt said. “No one asks for these things and they can happen to any of us at any time.”

Friends are collecting tax-deductible donations through the West Linn-based non-profit organization Good Deeds.

Hackney does not have private disability insurance and Social Security has a five month waiting period, according to Hackney’s Web site.

“My hope is that Brian and his family will be able to face this dreadful disease together without spending every day worried about how to pay the bills,” Keating said. “I hope that the spirit of community that his family stimulates can be used to ‘carry it forward’ as others will face similar problems in the future.”



Planning for the

milestones

Julie said their family finds comfort in routines they’ve established.

Brian Connolly of West Linn said that his daughter and Hackney’s 14-year-old daughter, Paige, play on the same club volleyball team. The Hackneys and Connollys sit together and watch games, as they have for years.

“Each time Paige serves, Brian (Hackney) laughs — watching his wife Julie turn her head as superstitions will not allow her to watch Paige serve the ball. Brian gives her the update after the fact, and it usually is a good update,” Connolly said.

Hackney is one of 500 people in Oregon and Southwest Washington with ALS, according to the ALS Association: Oregon and SW Washington Chapter.

Fighting tears Julie spoke of her husband.

“He’s an amazing guy. I respect him,” Julie said, crying. “He’s just — amazing.”

She continued, “(ALS has) really strengthened our family. We don’t talk about it. We don’t need to talk about it. We all know the end result.”

But Hackney said he tries not to focus on what he can’t control but rather what he can — his attitude.

“Everybody is so wonderful in taking care of me and my family. Since I can’t do a lot, the least I can do is be positive, supportive and appreciative verbally, the best that I can,” Hackney said. “No bad days.”

For more information about Brian Hackney, to read his blog and help the Hackney family, visit the Web site at www.bhackney.com.

Show your support
Participate in the following local events around Valentine’s Day’s “Week of Love” to show support for Brian Hackney:



* Feb. 11 — Feb. 29: Family Forever Portrait Fundraiser with Picture This Photography, West Linn.

Owner Nancy Steele kicks off a three-week portrait special with proceeds to be donated to help support the Hackney family. Bring yourself, family or pets for an 8x10 portrait in color or black and white for $75 ($105 discount). For more information, call 503-656-6127, e-mail ptpnancy@comcast.net, or visit www.ptpnancy.com.



* Feb. 13: Dine Out at Pizza Schmizza, 21700 Salamo Road, West Linn.

Fifty percent of the evening’s net proceeds go to the Hackney Family. Order from 5 p.m. to 9 p.m., for dine-in or take-out. For more information, call 503-657-5799 or visit www.schmizza.com for menu.



* Feb. 14: JJ Jump and JJ Extreme Parents’ Night Out, 9057 SE Jannsen Road, Clackamas.

5:30 p.m. to 8 p.m., supervised play for ages 5 and up while you celebrate Valentine’s Day. Cost is $15 per child, which includes one slice of pizza and a soda. One hundred percent of proceeds will go to Hackneys. Also donating proceeds will be local artist John Jennings, who will sell signed marine prints and provide caricatures. Register by calling 503-723-3600.


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