For Your Information: ALS - "The Monster"

This article was published on Sunday, April 29, 2007 3:05 PM CDT in Living
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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