Because they love her


Family, friends share the care for Roseburg’s Julie Brizendine, suffering with Lou Gehrig’s disease



JENNIFER MATHIS, jmathis@newsreview.info
December 24, 2006

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While Julie Brizendine may be in a wheelchair, those who love her say she’s the same woman they’ve always known.

Those with physical disabilities have more physical demands, says Brizendine’s caregiver Leah Willis, but their desire to fit in and have relationships is as real as anyone else’s.

At 48, Brizendine was diagnosed with Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease, a progressive neuromuscular disease that affects nerve cells in the brain and spinal cord.

Brizendine, now 51, says, “I’m still me. I just can’t walk.”



LIVING WITH ALS

Before living with ALS, Brizendine was active and independent. She helped maintain her Roseburg home and worked full time as the office manager of the Douglas County/Oregon State University Extension Service, where she was solidly employed for 30 years. She was a volunteer leader for 4-H for 15 years.

She and her husband Rusty Brizendine, 57, had raised a son, Brent Brizendine, 24, who now lives in Corvallis.

Brizendine retired in 2003 to turn her attention to baby-sitting her former co-worker Robin VanWinkle’s daughter, Hannah, now 4, and later, her great-nephew, Mason Amos, now 2. It was her greatest desire to care for children in her retirement.

She watched Hannah for a little more than two years and her great-nephew for about a month before quitting out of fear she might drop him.

Her muscles had begun to weaken.

Before being diagnosed, Brizendine started losing dexterity in her right hand.

Determined to continue the lifestyle to which she was accustomed, she used her left hand more.

She even started bowling left-handed, her highest score being an impressive 140 points.

After seeing physicians who eliminated other diseases of the neurological system, Brizendine was diagnosed with ALS in November 2003.

Around a year later, her equilibrium became unsteady as she struggled to walk and to stand without assistance.

The disease, she explained, weakens every muscle in the body except the heart.

She eventually became unable to walk at all and has minimal use of her left arm, just enough to run the wheelchair.

“I can move my arms and legs, but my arms can’t support a piece of paper,” Brizendine said. “It’s too heavy.”

Standing for five minutes wears her out.

Even sitting can be taxing.

“Your bottom can only take so much,” she said.

Her speech is slow yet steady and understandable, and her hearing, pristine.

“I have good hearing when I want to hear,” she says gleefully.

Little things she used to do without thinking, like scratching her head when it itches, now require assistance.

As caregiver, Willis, who knows Brizendine through her affiliation with 4-H, said working with her has put things in perspective.

“I don’t have anything to complain about,” Willis said.

Caring for someone with a disability has made Willis keenly aware of how people with disabilities are treated in public places and by businesses.

Situations are not always handled tactfully and respectfully.

“They don’t talk to her necessarily. They talk at her,” Willis said. “It’s made me aware, if you see someone who needs help, stop and help them. It could be you someday. You don’t plan for things like this.”

Brizendine said those in wheelchairs should be treated just like someone who’s walking.

But, ever positive, she sees the perks: “At the airport, I get first in line.”

“I think I have always been pretty positive,” she said. “I think it’s the way I am — sickness or not.”

Willis said despite her condition, Brizendine still wants to be seen as a wife, a mother and a friend. She said in no way does Brizendine want to impose or be a burden to anyone, especially her husband.

Rusty Brizendine, a self-employed mechanic, said the most challenging part of his wife having ALS is that there’s nothing that can be done about it.

He’s built two lifts — one to transport her from the wheelchair to the bathing chair and another to carry her from the wheelchair to the bed. The mechanisms help save helpers’ backs.

“It’s my Disneyland ride,” Brizendine said.

Rusty said, “You can’t fix the problem, so you try to make it easier.”



Click to Enlarge
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The short attention span of 4-year-old Hannah VanWinkle leaves Julie Brizendine laughing, as Hannah leaves two presents in Brizendine’s hands to look around for more to open. Brizendine used to baby-sit Hannah, who now gets rides from Brizendine on her wheelchair.
ANDY BRONSON / N-R staff photo

SHARING LOVE

Brizendine has developed a new passion since she retired: the Food Network.

Laurie Miller, a former co-worker of Brizendine’s, joked that an important quality about care giver Willis is that she’s also a gourmet cook.

One of Brizendine’s favorite outings is the occasional trip to Eugene to eat at the Olive Garden and shop at Costco.

“Costco’s a time vortex with Julie. You might as well plan on four hours,” said VanWinkle of Roseburg.

Willis said on one occasion they got caught in a downpour leaving the store.

“She doesn’t care,” Willis said. “She laughs everything off.”

Willis of Dixonville is one of 32 friends and family members trained to provide care for Brizendine. She’s the only one who is paid.

She spends three days a week with Brizendine — feeding her, brushing her teeth and hair, bathing her, helping with flexibility and doing laundry and other small chores. Together they’ll shop online for clothes.

Brizendine said Willis’ shift ends at 2 p.m., although sometimes she stays until 4:30.

“We laugh and laugh and laugh, except no laughing when I eat ’cause then I choke,” Brizendine said.

Friends and family of hers formed a support group in October 2005 — Share the Care — based on ideas and suggestions from a book bearing the same name.

“Share the Care” provides step-by-step guidelines on how to organize a group to care for someone who is seriously ill, essentially to divide, or share, the care.

About the book 'Share the Care'
In the book “Share the Care,” the care group came about when 12 friends joined forces and divided their time to help a terminally ill friend. The book documents the systems they developed during that period.

The text provides the tools to organize a group to care for someone who is terminally ill. It has guidelines, suggestions and a workbook section to help eliminate worry for the patient and burnout for the caregivers. The idea behind “share the care” supplies an answer to the question so many ask when someone is diagnosed with a serious illness — “What can I do?”

“Share the Care” was authored by Cappy Capossela and Sheila Warnock and published by Simon & Schuster in 1995.

“It was kind of a catalyst to getting organized. It really kind of gave us a guide to make it a reality,” said VanWinkle of her and others’ desire to help Brizendine.

When Brizendine was first diagnosed, her co-workers from the OSU Extension Service and friends from 4-H rallied around her and wanted to help, but didn’t know what to do.

It was through the initiative of Turella Woods, Brizendine’s sister-in-law who lives in Portland, that Share the Care came about. After hearing about the book, she read it and passed it to VanWinkle and Miller, who developed a list of people they thought would want to help. They contacted each one and followed up with a meeting to organize the group and get it started.

“This was a way Rusty could still work and Julie could still have a social life,” said Miller of Roseburg.

VanWinkle said the group sends a message to the Brizendines and their family that they can accept help from others and that they’re not alone.

Brizendine said, “I feel like sometimes I’m not worthy of everyone, but I am blessed by all the friends ’cause everyone, besides my family, have been associated with 4-H and my working at the extension office.”

To keep the system going, 16 co-captains were appointed who work in teams of two. Each pair of co-captains take turns coordinating care for several days each week, taking into account people’s interests and availability. They maintain the calendar and communicate with Brizendine through an online message board. Woods, though long distance, helps coordinate the care of Brizendine as a co-captain.

“If an emergency situation or a need for the week occurs, they are the point person for the week,” VanWinkle said.

They become responsible for finding people to provide the care needed or meeting the need themselves.

Group members provide care for Brizendine’s personal needs — haircuts, showers, bookkeeping, paying bills, doing light household chores, etc. — and several are trained in operating the van equipped for a wheelchair.

“I think I have the most wonderful friends ever, and the only thing, really, that has changed is I can’t do much by myself. I have to rely on my helpers,” Brizendine said. “I can’t eat without them. I guess I could put my face in the plate and try to lick it,” she said with a laugh.

And her desire to be around children is still being met. All the members of the group have kids, she said.

“They bring them to entertain me.”

Miller said she doesn’t view Sharing the Care as service at all. Instead, she describes it as an extension of their friendship and sees the care as something Brizendine would do for any of them.

“It’s just a way to spend time together,” Miller said.

Brizendine’s son Brent has taken the role of tech person, helping to maintain the Web site for Share the Care.

“He’s not real excited about helping his mom off the toilet, but he will do it,” Brizendine joked.

VanWinkle said there aren’t any special qualifications one has to have to participate.

“Prerequisite is Julie likes them,” Miller joked.

“We come from all different walks of life and it’s a real unity, the center of it being Julie.”

So you know
Care the Share fund estblished


A Share the Care fund has been set up to help offset medical and other expenses related to Julie Brizendine’s condition. Tax-deductible donations may be made payable to Friends of Julie Brizendine at any Umpqua Bank.


About ALS
AKA
Lou Gehrig’s disease


Both a sign and a symptom of Amyotrophic Lateral Sclerosis is the steady weakening and shrinking of the muscles over time.

The disease begins in one region of the nervous system and causes the upper and lower motor neurons to die in that area, followed by the muscles growing weaker and smaller.

ALS can affect any muscle group, including those muscles that control facial expressions, chewing, swallowing, speaking, the arms, neck, trunk, legs and breathing. There is no clear prediction where the weakness will spread after it affects a particular muscle group. The one exception is when one arm or leg is involved, the opposite arm or leg is likely to weaken next.

While there is no cure for ALS, there is one drug which is thought to extend survival time for its victims. Treatment in the form of physical therapy, occupational therapy and speech therapy help to relieve symptoms. Longevity for those with ALS ranges from about two months to 30 years.

ALS is often referred to as Lou Gehrig’s disease. Gehrig was a famous baseball player for the New York Yankees who played in more consecutive baseball games than any other athlete until his record was beaten in 1995 by Cal Ripken, Jr. Gehrig became a symbol of indestructibility — he was known as the “iron man” of baseball.

In 1939, Gehrig stepped down from the sport, knowing that something was physically wrong. Within a few months, he was diagnosed with ALS and died two years later.


— Information gathered from “Living with ALS — What It’s All About?” booklet, published in 1997 by The ALS Association, and “ALS Patient and Caregiver Resource Manual,” published in 2004 by the ALS Association of Oregon and Southwest Washington.


BELIEVER

When Brizendine was diagnosed, her husband said physicians gave her a one- to three-year life expectancy, which she has surpassed.

In response to the timeline, Brizendine said, “How about 15 to 20? No one to three for me.”

Willis said working with Brizendine has been a godsend.

“Julie has a strong Christian faith and she has inspired me in that respect.”

“Here she is with this total physical disability, and yet she’s such a good friend and counselor. I’m just amazed that she’s still unselfish.”

VanWinkle said that’s one thing about Brizendine – she’s never complained.

“Even on rough days, you wouldn’t know it. She always has a smile on her face, a bright light in her eyes and a good word for anybody.”

Brizendine said, “I decided that if I was gloom and doom no one would come see me. So, I said, I can be happy no matter what. I have my days, but most of the time I have a good time.”

She said she’ll eventually be paralyzed if ALS follows its usual course.

“But God’s going to cure me,” she said, “’cause I’ve been asking for his miracles.”

Brizendine looks forward to spending Christmas with her immediate and extended family members — all 26 of them.



• Reporter Jennifer Mathis can be reached at 957-4208 or via e-mail at jmathis@newsreview.info.

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