For Your Information: ALS - "The Monster"

This article was published on Sunday, April 29, 2007 3:05 PM CDT in Living
Email this story Print this story Comment on this story In His Words

Excerpts From Journal

Of ALS Patient Chris Simmons

My wife and I have had to adjust to some major lifestyle changes since my diagnosis, but we try to look forward and stay positive. For instance there are no more meals (as we knew them) to enjoy together anymore. One of our favorite pleasures was eating out. This is not possible any more. We have to rest more; consequently less time is available for other activities. In addition we find that some people find it hard to see beyond the disease and now seem a little uncomfortable with the situation. Thank God this is not everyone.

Last weekend (March 3, 2006) I was in Houston to do my three-month checkup and was informed I was doing OK. I was not getting better, but I was not getting worse. This, as you can imagine, made me and everyone else happy.

ALS starts in the body in two different ways. One way is called limb onset. The ALS I started with is called the bulbar onset. This hits the muscles of the lips, tongue, jaw, palate and respiratory system. This, of course, leads to swallowing difficulty, lack of speech control and a buildup of saliva and eventually breathing problems. The speech problem is what shows up first. ... Of course I understand every word I say but those I speak to seem not to understand what I say.

Upcoming Fundraiser

What: Walk to D'Feet ALS

Host organization: the Northwest Arkansas Partner of The Amyotrophic Lateral Sclerosis Association

Honorary chairman: Eduardo Castro-Wright, CEO of Wal-Mart Stores

Venue: Main entrance near PF Chang's, Pinnacle Hills Promenade, Rogers

Time: 10 a.m. May 12

Registration: Online at www.als-arkansas.org or the day of the walk starting at 9 a.m.

Benefits: Continued ALS research and local patient services programs

About The ALS Association Northwest Arkansas Partner: The patient services staff is in contact with patients throughout the course of the disease to better determine services and equipment needs. The staff assists and supports patients by telephone and e-mail. Referrals are made to community resources, helpful suggestions are given to improve daily functioning, and information is shared on the latest advancements in the research for a cause and cure.

Information: Sylvia Kressen, manager of the NWA partner, 586-0230, or Betty Julian, 636-5178.

Source: Staff Report

AT A GLANCE

ALS Support Group Meeting

Venue: Jones Center for Families, Springdale

Time: 6:30 p.m. third Monday of each month

Information: 986-0335

FAST FACTS

Amytrophic Lateral Sclerosis

Definition: ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The progressive degeneration of the motor neurons eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost.

Prevalence: The disease most commonly strikes people between the ages of 40 and 70, and as many as 30,000 Americans have the disease at any given time.

Prognosis: Although the life expectancy of an ALS patient averages two to five years from the time of diagnosis, the disease is variable, and many people live with quality for five years or more.

Noted patient: Lou Gehrig first brought attention to the disease in 1939 when he abruptly retired from baseball after being diagnosed with ALS.

Source: ALS Association Web site, www.alsa.org
http://www.nwaonline.net/articles/20...7breakouts.txt

ALS Patient, Family Wage War Against Degenerative Disease
This article was published on Sunday, April 29, 2007 3:04 PM CDT in Living
By Debbie Miller
The Morning News
Email this story Print this story Comment on this story Related Photos HOLIDAY ISLAND -- The symptoms came first in the subtle nuances of spoken language.

"Th" sounds and the like suddenly eluded Chris Simmons.

The change alarmed his wife, Billie. After more than four decades of marriage, she knew the rhythm, cadence and pitch of Chris' speech.

Something was wrong. See a doctor, she urged.

He thought perhaps he just needed more time to adjust to new dentures, and he let it go -- until longtime friends came to visit. "Chris," queried the concerned visitor, "did you have a stroke?"

"Well, then I decided I had better go and have this thing checked out," he later wrote.

Dr. Greg Kresse, the family physician, thought he knew what was wrong. Additional tests and visits with other doctors, including a Houston researcher, confirmed the initial diagnosis.

Physicians call it Amyotrophic Lateral Sclerosis (ALS) -- a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord, resulting in muscle weakness and atrophy. There is no cure.

Many know the illness by another name: Lou Gehrig's disease.

Chris Simmons uses the moniker he heard at a recent support group meeting. Chris and David Harris, the widower who coined the phrase with his late wife, simply call ALS "The Monster."

Losing Speech

The disease has two general types of initial symptoms. In limb onset, the first symptoms appear in the arms and legs. The initial signs with bulbar onset are changes in the facial muscles, speech and swallowing.

Billie Simmons first noticed her husband's speech problems in late 2003. Today, Chris cannot speak and uses a device called a DynaWrite to type words that are converted into audio sounds uttered by a male-sounding computer voice.

When a question comes Simmons' way, stillness settles into the room. That's followed by the gentle pecking of keys on a keyboard.

For example, what would he like people to know about ALS?

"It is a very bad problem, and you have to look on the right side to make it," replied the device's male voice in crisp mechanized tones.

"The bright side, you mean," Billie Simmons pointed out. Typos happen occasionally, the two later agreed. The device also has some unique interpretations on pronunciation -- wind is with a long "i" sound (wind up), but winds is with a short sound (the winds blow).

Chris' wife reflected for a moment on the same question -- about what others should know about ALS.

"It could get you discouraged very quickly," she said. "You know that so far, there's no cure and that it is progressive. ... You just have to make the best of every day that you have."

Golden Year

The illness has changed much of the couple's daily life.

Chris Simmons used to love dining out. Today, he hasn't had solid food in about three years. He can't swallow it properly. He gets his daily nutrition through a feeding tube surgically inserted into his stomach.

He sometimes has difficulty breathing. "Cannot blow out a candle," explained the computer voice. He now uses a medical device known as a nebulizer that enables him to inhale a medicated mist that improves his breathing.

Another device aids his breathing while he sleeps.

He can't blow his nose, can't stick out his tongue and can't button the buttons on his shirt.

He was involved in the research trial of a growth hormone in which he took injections twice a day. The study ended in December, and his wife thinks he must have received the drug rather than the placebo in the blind study. Since the injections ended, the disease has progressed, she said, and he now has difficulty raising his right arm.

But neither Chris nor Billie spend time dwelling on the litany of can'ts.

The support of family and friends helps sustain them, she said. Faith in God and "the fact He will help us get through," also helps them.

"When you come from the bottom, there is only one way and that is up," Simmons tapped out on the keyboard.

This isn't the first challenge the couple has confronted.

They met in November 1955. She was a student at Northwestern State University in Natchitoches, La. He was an Army soldier stationed at Fort Bragg, N.C., who had been sent to Louisiana for training maneuvers. The soldiers weren't even supposed to be on campus, but they entered what the women referred to as the "drawing room" of the residence hall, Billie recalled. She was playing the accordion; her friend was playing the piano.

The couple's first date was watching a football game. She admits to being "smitten." He returned to Fort Bragg, but soon, he was ordered to Louisiana to help reopen Fort Polk.

"Two years later (July 1957), we got married," sounds the computer voice.

She still had a year left in college, and she finished her degree.

Their first child, Christy, was born, and Chris began college within a few days.

"For the first few years, we bought baby food and books -- and tuition," Billie Simmons said with a chuckle.

For Valentine's Day this year, Billie purchased her husband an album of songs popular in the 1950s when they were dating. Among the tunes: Fats Domino's "Blueberry Hill," a song she recalls singing when they first met.

In addition to Christy, they had three other children, Jennifer, Allanah and Patrick.

They carved out a life in Louisiana. She worked as a teacher. He was an advertising sales representative. Later, they went into the candle business. They had visited Eureka Springs and were struck by the rugged beauty of the Ozarks. They moved to Northwest Arkansas and established Eureka Springs Candle Co. almost 30 years ago. (It now does business as B.J.'s Candles and Things.)

A Good Day?

In 2005, Chris Simmons resolved to put on paper what had transpired since his diagnosis. As an aside, he wrote that he would later put all of the information in the correct time frame of his whole life "which, by the way has been great."

So what constitutes a good day now?

Billie Simmons ticked off a couple things quickly: "when we get up, and his breathing is not labored; when we can get in a car together and go somewhere."

"He has to rest a lot," she said, "and, of course, the feeding tube that you have to carry with you keeps us local a lot."

She wasn't complaining. Simmons also remains positive.

"He's always upbeat," she said of her husband. "That's what's so great about living with Chris. He just doesn't let ... things get him down. It amazes me how he copes. ..."

Finding Strength

"Some days are real tough to get through," Billie Simmons said, her blue eyes welling up. "In spite of yourself, it will hit you and you just have to kind of focus on something else."

Chris Simmons flips through printed pages of some of his journal and points to a section about caregivers.

"The caregiver position has to be one of the most frustrating jobs in the world," he had written. "Here you are with your spouse who has been able to hear your voice since you have been together and now she cannot understand what you are saying, not only understand what you are trying to say to her, but what you are trying to get across to her. Even with talking devices or paper and pencil, there is also a time element that is hard to overcome. ... I have seen several cases where (the) ALS person is mad or griping or fussing at their caregiver for not understanding them. They are not thinking of the predicament their spouse is in. The ALS person did not bring this disease on themselves, but I think they also must know that their spouse did not bring the frustration on themselves either."

Both Billie and Chris draw comfort and strength from local ALS resources and a support group meeting they attend each month at the Jones Center for Families in Springdale.

"We understand the tears. We understand the joys," Billie said at a recent ALS group session.

Jean Price, whose husband David has ALS and uses a communications device like Chris, said the spirit of the people keeps them coming back. "It gives you the feeling like you're not the only one in the world."

Barbara Shadden, a University of Arkansas professor who also is a co-director for the Office for Studies on Aging, acts as facilitator for the group.

The meetings typically blend a time of sharing with discussion about resources or information from those with particular expertise in an area. One meeting dealt with lifting patients.

Shadden compares the support group to a kind of community or family that enables those who have received a stunning diagnosis to recognize they're not alone and there are others who can help guide them and provide resources.

"There's an engagement," she said of the group. "These folks know that life is precious, and they're just very present tense ... very much in the moment."

Billie Simmons told a story that could illustrate that point.

A grandson of theirs, Robbie Rodriguez, was portraying Elvis in a school play in Rogers.

Their daughter, Allanah, had rented a special Elvis costume for the occasion, and the delight of the grandparents was when this young Elvis impersonator closed out with "Thank you. Thank you very much."

"I thought now there's one of life's moments," said the proud grandmother. "We take times like that, and we think well, you know, life is good."

Upcoming Fundraiser

What: Walk to D'Feet ALS

Host organization: the Northwest Arkansas Partner of The Amyotrophic Lateral Sclerosis Association

Honorary chairman: Eduardo Castro-Wright, CEO of Wal-Mart Stores

Venue: Main entrance near PF Chang's, Pinnacle Hills Promenade, Rogers

Time: 10 a.m. May 12

Registration: Online at www.als-arkansas.org or the day of the walk starting at 9 a.m.

Benefits: Continued ALS research and local patient services programs

About The ALS Association Northwest Arkansas Partner: The patient services staff is in contact with patients throughout the course of the disease to better determine services and equipment needs. The staff assists and supports patients by telephone and e-mail. Referrals are made to community resources, helpful suggestions are given to improve daily functioning, and information is shared on the latest advancements in the research for a cause and cure.

Information: Sylvia Kressen, manager of the NWA partner, 586-0230, or Betty Julian, 636-5178.

Source: Staff Report

AT A GLANCE

ALS Support Group Meeting

Venue: Jones Center for Families, Springdale

Time: 6:30 p.m. third Monday of each month

Information: 986-0335

FAST FACTS

Amytrophic Lateral Sclerosis

Definition: ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The progressive degeneration of the motor neurons eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost.

Prevalence: The disease most commonly strikes people between the ages of 40 and 70, and as many as 30,000 Americans have the disease at any given time.

Prognosis: Although the life expectancy of an ALS patient averages two to five years from the time of diagnosis, the disease is variable, and many people live with quality for five years or more.

Noted patient: Lou Gehrig first brought attention to the disease in 1939 when he abruptly retired from baseball after being diagnosed with ALS.

Source: ALS Association Web site, www.alsa.org

In His Words

Excerpts From Journal

Of ALS Patient Chris Simmons

My wife and I have had to adjust to some major lifestyle changes since my diagnosis, but we try to look forward and stay positive. For instance there are no more meals (as we knew them) to enjoy together anymore. One of our favorite pleasures was eating out. This is not possible any more. We have to rest more; consequently less time is available for other activities. In addition we find that some people find it hard to see beyond the disease and now seem a little uncomfortable with the situation. Thank God this is not everyone.

Last weekend (March 3, 2006) I was in Houston to do my three-month checkup and was informed I was doing OK. I was not getting better, but I was not getting worse. This, as you can imagine, made me and everyone else happy.

ALS starts in the body in two different ways. One way is called limb onset. The ALS I started with is called the bulbar onset. This hits the muscles of the lips, tongue, jaw, palate and respiratory system. This, of course, leads to swallowing difficulty, lack of speech control and a buildup of saliva and eventually breathing problems. The speech problem is what shows up first. ... Of course I understand every word I say but those I speak to seem not to understand what I say.