A debilitating disease
By Jeanne Millsap Correspondent March 5, 2013 1:30PM
Gerald Swihart (back center) with his family after his diagnosis of ALS. | SUBMITTED PHOTO
At A Glance
ALS, amyotrophic lateral sclerosis, or Lou Gehrig’s disease:
What is it?: A disease where the nerve cells that control muscle movement and strength die off.
Who gets it?: Anyone, but symptoms usually develop after the age of 50.
What causes it?: Unknown. But about 10 percent of the cases are genetic.
First symptoms: Muscle weakness, twitching, and sometimes a change in personality.
As symptoms progress: An inability to move the muscles. When respiratory muscles cannot move, the person will die if not on a respirator.
Mental state: Intellect and the five senses may stay sharp throughout, although thought processes and behavior are affected in many cases.
Sources: U.S. National
Library of Medicine,
www.ALSA.org, Dr. Surendra Gulati, Dr. Stanley Appel.
Updated: April 7, 2013 6:01AM
The face of ALS, amyotrophic lateral sclerosis, today is undoubtedly Stephen Hawking, world-renowned physicist who at 71 years old has lived with the condition for 50 years. His body’s muscles have long since wasted away, but his mind is still as sharp as they come.
That example, however, is not representative of the vast majority of ALS cases. There are different varieties of the motor-neuron condition, with some affecting more than just the muscles. Many times, the thinking and reasoning centers of the mind, along with the decision-making areas, are the first signs something is amiss.
Loved ones can be sent into a whirlwind of emotions when a member of the family suddenly begins to gamble or have affairs before the diagnosis is even made.
Hawking’s age of onset and longevity are also the exception. Most ALS patients are diagnosed after the age of 50 and die within five years of the diagnosis.
First sign
It was Sharon Swihart, a Morris math teacher, and church friends who first noticed an odd speaking behavior in Sharon’s husband, Gerald.
“He would talk too quietly,” Sharon said. “We would be praying, and he would be mumbling. It sounded like he was having trouble talking.”
He also began having trouble with judgments. Little things, such as choosing shirts and pants that didn’t match — a very different persona from his usual.
“One of the first things that happened was that he lost the ability to speak and to reason,” Sharon said. “It was like his common sense got broken.”
The Swiharts were stunned when Gerald was diagnosed with ALS. “Total shock” is how they described it. The condition was terminal, usually within five years of diagnosis. Their two younger children were with them at the time. Their older son was on his honeymoon.
“We went back to the car and just cried,” Sharon said.
Gerald’s ALS included frontotemporal dementia, or FTD. It’s thought that FTD affects around 20 percent of ALS patients, adding personality and behavioral changes to the body’s muscle problems. According to explanations by Dr. Stanley Appel, director of the MDA/ALS Center in Houston, about half of all ALS patients have some thinking problems.
It is a dreadful condition, said Dr. Surendra Gulati, neurology medical director at Presence Saint Joseph Medical Center in Joliet.
“ALS varies a great deal from person to person,” Gulati said. “It involves weakness and atrophy of muscles, and swallowing and speech are usually affected.”
Treatments, Gulati explained, are multidisciplinary and are designed to preserve the muscles. They may involve social workers, speech therapists, occupational and physical therapists, nutritionists and medical specialists.
As in some other neurodegenerative diseases, an accumulation of abnormal proteins has been identified in the brains of ALS patients, and research is focusing on that discovery.
Difficult journey
Sharon Swihart said it was a long and difficult journey from the time of her husband’s diagnosis in 2002 at the age of 50 until his death of pneumonia eight years later. Gerald wanted to continue working as a nuclear engineer for as long as possible, continuing to drive back and forth until he began having car accidents.
He saw teams of doctors at the University of Illinois at Chicago, the University of Chicago, Northwestern University and Mayo Clinic.
“Basically, I just existed,” Sharon said. “We were in grief. I went through a lot when I finally realized I didn’t have the temperament to be a caregiver, and he was agitated because he couldn’t communicate with us. … It was a slow downhill from there, and that was the toughest thing with ALS.”
Eventually, Gerald was confined to a wheelchair, only able to move a few muscles in his legs. He had his family and a wonderful caregiver, Sharon said. His body was almost gone, but he still had his mind. ALS is such an isolating disease, his wife said.
“He still knew people,” Sharon said. “You could tell it in his face. He was so happy to see his kids and his grandchild.”
The family is “doing OK” now, Sharon said. There is still a big hole in their lives and their hearts. They keep his memory alive by reminiscing about the good times. It was only with God’s help they made it through those difficult years, she said.
“God gave us the grace to do it,” she said. “I don’t know how people do it without faith.”
Additional sources for this
article: National Institutes of Mental Health.
