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  Facing ALS one day at a time
Posted October 24, 2005 in PALS Profiles

STROMSBURG, Neb. (AP) -- She can no longer speak and struggles just to make it up the short flight of stairs to her bedroom each night.

But June Moore, a 71-year-old Stromsburg woman, doesn't spend time asking, "Why me?"

Sitting in her living room chair, her walker within arm's reach, June reaches down to grab a small touch-screen computer. Placing it on her lap, she types for a moment, then looks up as she presses a final button.

A computerized woman's voice comes from the machine, "My husband should be in soon. Go to the back door and call out 'Dale."'

Since May, the communication device has been June's voice. She can't talk because of Bulbar ALS, a form of Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig's Disease. The onset symptoms of Bulbar are in the facial muscles, speech and swallowing.

Along with being unable to talk, June has lost her ability to eat. She has to be fed through a feeding tube.

Her husband, Dale, whom she calls her good nurse, cares for her at their home. He helps her to bed every evening, prepares her food and medication, and drives her to doctor's appointments and support group meetings.

"She's taken care of me for years, now it's my turn," Dale said.

The couple has been married 52 years.

ALS usually affects people between the ages of 40 and 70 and can attack both the upper and lower body. It causes degeneration throughout the brain and spinal cord, according to the ALS Association Web page.

June's first symptoms appeared two years ago.

"Her voice was getting funny. It sounded like she was drunk," Dale said.

She also had another common symptom of ALS -- her muscles began to twitch.

At first, doctors said she had acid reflux, but after a June 2004 visit to a specialist in Kansas City, June was diagnosed with Bulbar ALS.

The disease progressed rapidly. Just last fall, June said, she was able to help harvest the crops on the couple's farm. Now she spends most of her day watching television and reading.

Unlike Alzheimer's or other diseases that affect a person's memory, those with ALS are aware of what is going on around them. Dale describes the disease as having a fine mind, but a useless body.

Typically people live two to five years after their diagnosis, so the couple think of each day they have together as a bonus.

"We take it one day at a time. When there is nothing you can do about it, it doesn't do any good to dwell on it," Dale said.

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