Tuesday, February 24, 2009 6:08 PM CST
Fighting ALS
Mattoon mother assumes ALS leadership role as son battles disease
By Bonnie Clark, Features Writer
“He walked... No, he ran, climbed, jumped...” reads the caption on scrapbook photos of 1-year-old Rick Warrick. But, today those abilities are being taken away by an insidious fatal disease called amyotrophic lateral sclerosis, commonly called ALS.
Warrick, 48, of Springfield is the son of Peggy Woods of Mattoon, who a few months ago was named Illinois’ first county ambassador for Coles County by the St. Louis Chapter of the ALS Association.
Woods shared scrapbook photos at her home recently — photos of the little boy with red hair and brown eyes, who seldom walked when he could run.
“I didn’t really know much about the ALS Association until Rick asked if I would be on his walk team,” Woods said.
She walked with a group of family and friends in the “Walk to Defeat ALS” in Springfield on Oct. 18, 2008.
She has since learned a great deal about the association, which provides a full range of services for patients who have the progressive neurodegenerative condition, also known as Lou Gehrig’s disease.
Warrick ignored early symptoms, such as occasional slurred speech and one leg that would sometimes drag, Woods said.
When symptoms eventually forced him to visit his family doctor, he was referred to a neurologist, who prescribed back surgery.
Warrick sought a second opinion from a neurologist friend at Southern Illinois Medical School in Springfield.
“He started running tests,” Woods said. “He suspicioned what it was and I think he ran every test imaginable trying to prove that it wasn’t what he thought.
“When the doctor finally called and said he had a diagnosis, he asked Rick and his wife, Vicki, to come to his office. He said, ‘Rick, this was the hardest diagnosis I ever had to make.’ And he told him he had ALS.
“When you hear that diagnosis, you just can’t take it in,” Woods said. “I called my sister and told her, and I said ‘I can’t do this; I just cannot do this.’ She said, ‘Yes you can. The rest of us will be there for you.’
“And they will, I know that, but losing a child is something that should never have to happen to any mother.”
According to the ALS Association, the disease affects some 5,000 new patients annually.
“Every day 15 people in the United States are diagnosed with ALS,” Woods said, “and there is no cure.”
Scientists are still searching for possible causes of ALS. In approximately 5 percent of patients, a genetic connection exists suggesting the possibility of a gene defect, however, in the majority of cases, there is no known cause.
About half of all people with ALS live at least three years after diagnosis, and 20 percent live five years or more. As many as 10 percent will survive more than 10 years.
Warrick is now confined to a wheelchair. A former sheet metal worker, he enjoyed mentoring Boy Scouts for nearly 20 years before ALS struck.
“He doesn’t use a walker,” Woods said. “He doesn’t have enough strength in his arms to hold himself up.
“He has also begun to have trouble with the muscles on one side of his neck, and his speech has gotten slurred so there are times I can’t understand him on the phone.”
One day, when they were talking, Warrick told his mother, “Mom, I know how this is going to sound to you, but I wish I had something like Alzheimer’s, because my mind would go and I wouldn’t care, wouldn’t know what was going on. But, my mind is good and it’s alert, and I’m watching my body attack itself.”
Although the disease may affect patients differently, eventually muscle weakness and atrophy spreads to different parts of the body. Patients experience problems with walking, swallowing, holding their heads up, speaking, using their hands and arms and, in the later stages, they have difficulty breathing. Eventually, paralysis may rob them of all movement.
Cognitive abilities, however, are usually not affected.
“Their minds stay sharp, so they’re aware of how their bodies are betraying them,” Woods said. “That’s one of the horrendous things about this disease.”
Woods, the wife of the Rev. Jack Woods, a semi-retired Methodist minister, and the mother of three sons and a daughter, said the tragedy that affects her family has drawn them closer together.
“This is another place where your faith really holds you up,” she said, “and faith is my bedrock. I don’t know how people could face this without it.”
Although he has weakness in his arms, Warrick is still able to feed himself, Woods said, and is able to use the computer.
“He spends a lot of time on the computer and talks with other ALS patients by e-mail. They support each other.”
In an e-mail, Warrick described some of his feelings about dealing with ALS:
“Probably the hardest obstacle I had to overcome was being put on disability and not being able to work,” he wrote.
“Almost every day I find a new limitation that I have to overcome. That is also the most frustrating part of it — the limitations. Doing some menial task one day, and fighting to get it done the next day.
“The easiest of chores now becomes a two-hour battle. Everyday things that you used to take for granted now take assistance from a loved one or a professional caregiver that comes into your home two-three times a week.
“ALS takes more than just your muscles,” he wrote, “it takes a lot from inside you that doesn’t want help and doesn’t want to ask for help.”
Woods tells the story of the day Warrick, while doing his job as a sheet metal worker, called to say he was on the seventh floor of the new Sangamon County Building in Springfield.
“I said, ‘Rick, that building doesn’t have seven floors yet,’ and he said, ‘I know, but I’m up here anyway.’
“I told him, ‘Rick, your mother doesn’t want to know you’re up there.’”
Warrick can no longer step out on the highest beams overlooking the city.
But in his mind he can.
Contact Bonnie Clark at bclark@jg-tc.com or 348-6847.
SIDEBAR:
ALS group has much to offer
As an ALS Association county ambassador for Coles County, Peggy Woods of Mattoon is working to help develop better services for ALS patients in the area, as well as raise funds.
Ambassadors work with the chapter staff in all areas, including patient services, public and professional education, advocacy and development.
“All services provided by the ALS Association are free,” Woods said. “Everything the association provides patients is free. It doesn’t cost the patient anything.
“Everything is provided, from commodes to wheelchairs to lifts. They even provided cases of Ensure because when patients start having trouble swallowing, that’s something they can handle.”
Services offered include case management; home visits; professional guidance; in-home speech, physical, and occupational therapy; respite care; nutritional supplement assistance; in-home computer and speech-generating access; and many others.
Woods knows first-hand how important support is to those with ALS and their families.
“I want people to know that they have a touchstone here in Coles County that can get them channeled in the right direction,” she said.
ALS patients, family members or friends may contact Woods by calling 254-2281.
Planning for various area fund-raising projects is also under way.
“It’s a bad time to start fund-raising, I know, but the need is still there.
“You have to have goals,” Woods said, “so, we’ll start out small and we’ll grow. The economy will get better. And one day, before long, we will find a cure.”
Add your comments
Not already registered?
Then click Here.
Comment policy:
JG-TC.com encourages readers to engage in civil conversation with their neighbors. Comments that are submitted are not posted to the site immediately. They go into a queue to be moderated and may take several hours to be reviewed. Comments posted on Saturday may not be reviewed until Sunday afternoon.
In order to keep the page a set width, long lines (mostly long links) will be chopped. Try putting spaces in your links or consider using tinyurl.com to make a smaller link that you can include.
We will never edit or alter your comments, but we do reserve the right to remove comments that violate our code of conduct.
No comment may contain:
* Potentially libelous statements; such as accusing somebody of a crime, defamation of character, or statements that can harm somebody's reputation.
* Obscene, explicit, or racist language.
* Personal attacks, insults, threats, harassment or inciting violence.
* Commercial product promotions.
If you have any questions, please contact our moderator.
|
|
|
|
|
