Mom and teacher battles Lou Gehrig's disease while raising awareness
By Paul Swiech
pswiech@pantagraph.com


Nancy Adkins, 48, of Sibley, can't move her arms because she has ALS (Lou Gehrig's disease). Her husband, Lonnie, has become accustomed to helping Nancy with simple things, such as clearing her nose and wiping her tears. (The Pantagraph/LORI ANN COOK)


With assistance from her sister, Charlene Metz, and her husband, Lonnie, Nancy begins to practice on the Eye Gaze machine, which will help her to communicate after she loses the ability to speak.


SIBLEY -- Nancy Adkins isn't able to help her 14-year-old daughter, Jaime, as she did Jaime's older brothers. Nancy can't help Jaime with her homework, can't attend all of her activities and can't host Jaime's friends. | Photo Gallery

"I can't do her hair or get her ready for dances," Nancy, 48, said with a speech impairment. "She helps me do my hair."

Nancy has ALS (amyotrophic lateral sclerosis), the progressive neurodegenerative muscular disease commonly called Lou Gehrig's disease.

"I want people to know about ALS," Nancy said in her home in Sibley, about 45 minutes east of Bloomington-Normal. "It's a damned disease" -- especially for a woman who was a busy mom, wife and Head Start teacher who enjoyed hosting get-togethers and loved the outdoors.

Now -- only four years after her diagnosis on April 30, 2004 -- she is almost totally paralyzed and speaks with difficulty.

"It's not just her disease. It's our disease," said her husband, Lonnie, 51, a truck driver.

"It's hard," admitted Jaime, after returning home from Gibson City-Melvin-Sibley High School in Gibson City, where she is a freshman.

"I can't really remember how she used to be. It's hard to know that I won't have her all my life." The average person with ALS lives three to five years after diagnosis.

"It's not a good thing. It's not fair. But it's the way it is," Jaime said.

But anyone who feels sorry for Nancy, Lonnie, Jaime and the rest of the family can just get over it. They don't want your pity. They want your understanding.

Since her diagnosis, Nancy and her family have become advocates for people with ALS. From their modest home on the edge of Sibley in Ford County as their home base, they offer wristbands in exchange for donations to the ALS Association, organize an annual golf outing in nearby Gibson City, participate in an awareness building walk in Springfield, and lobby legislators once a year in Springfield and Washington, D.C.

Raising awareness

The ALS Association's St. Louis Regional Chapter -- which covers Central and Southern Illinois and Eastern Missouri -- recently named the Adkins family as the family that best exemplifies the spirit of the ALS Across America campaign. That means they are trying to live life to the fullest while positively impacting their community by expanding ALS awareness.

"She's very good at telling her story and how the disease has affected her and her family," said Sharon Gacki, education, awareness and advocacy director for the St. Louis Regional Chapter. "That definitely impacts the congressmen and senators and their health aides.

"She's done a lot in her little town. And she does it all in a wheelchair, which is no easy task."

Gacki paused for a moment.

"Nancy realizes that nothing will save her life or affect the course of her disease. But she doesn't want future generations to go through what she's going through."

Nancy, a Sibley native, and Lonnie, a Paxton native, have been married for 27 years. They each have a son from a previous marriage -- Nancy has Bryan Rollins, age 31, and Lonnie has Shaun Adkins, age 30.

Nancy worked for 15 years as a preschool teacher, first for a private preschool in Forrest, then as a Head Start teacher in Paxton for East Central Illinois Community Action Agency.

Nancy loved to be outside, camping, boating, horseback riding and snowmobiling. She also enjoys being with her family, including Lonnie, her children, her four grandchildren, her parents and her siblings.

"I enjoy being around people," Nancy said.

"You never met a stranger," Lonnie told her.

Signs of trouble

In 2003, the pointer finger of her left hand weakened and soon Nancy couldn't move it. Then she lost control of her left foot and it would flop down as she walked.

She went to Loyola University Medical Center in the Chicago area for tests. On April 30, 2004, she got a call from a neurologist, who told her he was 99 percent sure she had ALS, a disease for which there is no cure and no treatment.

"I fell apart," Nancy said. "I cried and cried." She immediately told her family and Lonnie's family.

Her younger sister, Charlene Metz of Sibley, recalled the family meeting when Nancy broke the news.

"It was devastating," Charlene said. "It was horrible."

Charlene said her older sister's energy level made the news all the more ironic.

"When she invited you to dinner, she would take care of everything," Charlene said.

Nancy said, "I took care of my family. For me the hardest thing was (recognizing) that I would not be able to do it."

The disease crept up her hands and arms, which began to weaken. As the symptoms increased in summer 2004, she slipped into depression and stopped going out into the community.

"We told her 'You can't sit in this house and die,'" recalled Charlene, who works at a doctor's office in Bloomington-Normal. A combination of family support, faith and prescription antidepressants helped Nancy get out of her funk.

"The first time she went back out in public was the hardest and we went out as a family," Charlene recalled.

"I decided to stop feeling sorry for myself," Nancy said. "My kids and family helped. I wanted to do something to build awareness of ALS."

About a year after her diagnosis, her symptoms had progressed to the point where she could no longer work.

She has almost no use of her fingers, hands and arms, although she can move a computer mouse, a television remote and operate a Lifeline button between her hands. She can no longer walk and uses a wheelchair, but she can stand, with assistance, long enough to transfer herself in and out of a wheelchair.

"If I fall, I fall hard," Nancy said.

She speaks with an impairment and sometimes is difficult to understand. She can't project her voice or yell, which means -- for safety reasons -- that someone must be with her at all times.

Since last year, she has had a personal assistant for six hours during the day. The rest of the time, Lonnie, Jaime, Charlene or another family member is with Nancy. She needs help with everything from eating to using the restroom.

"Lonnie and I do most of the bathing," Charlene said. "It's hard on her (Nancy's) pride."

Lonnie said, "I didn't do housework, laundry or cooking. I do now."

"I miss being able to get up and go wherever I want," Nancy said. "I miss hugging my grandkids. I miss talking."

"Think about it," Charlene said. "She needs help feeding herself. She needs help scratching her eyebrow. There was a spider crawling on her and she had to call one of us to brush it away."

Taking a stand

Nancy's interest in building ALS awareness drew her to the ALS Association. She participated in her first conference in Washington, D.C., in 2006, attending meetings and lobbying legislators.

Meeting other families with ALS was an emotional experience for her and for Jaime.

"Going to D.C. was eye-opening," Jaime said. "I didn't realize so many people had it (ALS). Before, I was in a sulky mood. When I saw other kids, I realized other families were going through it too. It kind of gave me motivation."

Jaime is involved in the walk, the golf outing and other programs to build awareness.

"I'm trying to help spread the word so other kids won't have to live with it like me," she said.

Nancy's mind remains sharp but eventually all that she will be able to move will be her eyes. Her family has acquired an Eye Gaze machine in which she can spell out what she needs or wants to say by looking and blinking on letters or phrases on a computer screen, which recognizes her pupils.

"She's learning to use it but it's really frustrating for her," Lonnie said as Nancy practiced using the Eye Gaze.

Nancy said her faith and the love and support of family keep her going.

"I can't let it (ALS) consume me," she said. "Every day is a blessing.

"You never know when it's your time to go. By the papers, I have one year left and I'm going to make it a good one."



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Upcoming ALS awareness events


National ALS Advocacy Day and Public Policy Conference

May 11-13 at the Renaissance Hotel in Washington D.C.

Nancy Adkins of Sibley and her family will be among ALS patients and family members from throughout the country attending educational sessions and research updates and meeting with members of Congress to advocate for an ALS registry.

3rd Annual Nancy Adkins Golf for a Cure of ALS

12:30 p.m. Friday, June 13

Railside Golf Club, Gibson City

Proceeds benefit the ALS Association, St. Louis Regional Chapter, which covers Central Illinois

For more information, call (217) 840-2645 or e-mail adkins_shaun@hotmail.com

Walk to Defeat ALS

10 a.m. Saturday, June 14

O'Brien Field, Peoria

Proceeds benefit the ALS Association, St. Louis Regional Chapter

Register at www.alsa-stl.org, by calling (888) 873-8539, or at 9 a.m. on the day of the walk

SOURCES: The Nancy Adkins family, Kathi Kupferschmid, Sharon Gacki



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ALS facts


• ALS (amyotrophic lateral sclerosis), often called Lou Gehrig's disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. When motor neurons die, the ability of the brain to initiate and control muscle movement is lost, leading to muscle weakness and paralysis.

• More than 5,600 people in the United States are diagnosed with ALS each year. About 30,000 Americans have the disease. Most people who develop ALS are between the ages of 40 and 70.

• About 90 percent of patients with ALS have no family history of the disease. ALS can strike anyone.

• The hands, arms, legs and muscles of speech, swallowing and breathing are affected by ALS. When breathing is affected, the patient needs a ventilator to live.

• Because ALS attacks motor neurons, the senses of sight, touch, hearing, taste and smell aren't affected. For many people, muscles of the eyes and bladder aren't affected.

• There is no cure or treatment that halts or reverses ALS.

• The typical person lives three to five years after being diagnosed. Cause of death often is choking or pneumonia. As patients lose the muscles in their throat, they have trouble clearing their throat and choke or get pneumonia because they can't clear their lungs.

• The ALS Association helps people living with ALS by funding research, advocating for increased public and private support of ALS research, and providing patient and community services, as well as public education.

• The ALS Association's St. Louis Regional Chapter -- which includes Central and Southern Illinois and Eastern Missouri -- serves about 300 patients a year.

SOURCES: www.alsa.org, Sharon Gacki, Lonnie Adkins



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What ALS has taught me


1. Patience

2. It isn't necessary to bite your nails.

3. Picking your nose is only a memory.

4. Most doctors don't know anything about ALS.

5. You learn the true meaning of a friend.

6. The medical community is big business and their bottom line is profits.

7. If you really need to know something about ALS, ask a caregiver.

8. Some pals have no sense of humor.

9. Some pals do.

10. A good husband makes life worth living!

-- Nancy Adkins

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