©Wauwatosa News Times 2003
By Janice Kayser
Staff Writer

In just over a year, Carrie Ozburn's life has taken a frightening turn.

Her four children and husband have watched the strength ebb from her once sturdy body.

Her hands and fingers that over the years have cooked and cared for her family have slowly closed in and crippled to the point where she is unable to grip a pencil, open a soda can, button a shirt or dial the phone.

Her legs no longer work; her ankles have swollen to nearly twice their normal size and she is confined to an electric wheelchair.

She needs assistance using the restroom and taking a bath. At every meal, she has to be spoon-fed.

At just 41 years old, Carrie is now completely dependent on others for her care.

It was May 2002 when Carrie started to experience strange symptoms.

Working as a payroll specialist at a Waukesha accounting firm, she remembers having trouble with her fingers and making mistakes while typing. When she walked, she noticed her right foot involuntarily turning inward. Her legs became heavy.

"Just going to the grocery store, walking up a flight of stairs, and walking around her office at work became difficult," she said. "My legs started to feel like dead weight."

For the next three months, Carrie saw several specialists, including chiropractors, rheumatologists, orthopedic surgeons and neurologists, to try to find the reason for her increasingly weakening state.

A number of scans and tests were done. Muscular dystrophy was ruled out, as were a host of other diagnoses.

On Aug. 8, 2002, Carrie and her husband, Bill, saw Paul Barkhaus, a staff physician and neurologist from the Medical College of Wisconsin who staffs the Neurology Clinic at Froedtert Hospital.

Barkhaus gave the Ozburns his last appointment of the day to complete a 90-minute interview.

"He stuck needles throughout my body to find out which nerves were unresponsive," Carrie said. "It was pretty painful."

But the poking and prodding finally gave way to an answer.

Barkhaus diagnosed Carrie with ALS -- amyotrophic lateral sclerosis -- often referred to as Lou Gehrig's disease, named after the Yankees baseball player who died from the sickness in 1941.

ALS kills brain and spinal cord cells that control voluntary muscle movement, resulting in a gradual muscle wasting and loss of movement. The word amyotrophic means "without muscle nourishment" and refers to the loss of signals the nerves normally send to the muscles. Eventually, the person with ALS is paralyzed.

Death, usually from respiratory complications, typically comes between three and five years after diagnosis, and about 10 percent of those with the disease live more than 10 years, while some survive for decades.

Carrie already knew about the disease after reading about her symptoms on the Internet. She knew about the quick progression of the disease and the eventual outcome. But she and Bill were both unprepared for that defining moment.

"I gasped. I couldn't catch my breath," Carrie said.

"I think I had a little bit of denial going on," he said. "That this could happen to Carrie was just unbelievable."

A change in lifestyle

Carrie had stopped working at her job prior to the Aug. 8 appointment.

"I didn't have the strength," she said.

Bill works as a machinist for Wacker Corp. in Menomonee Falls. He said his employer has been understanding as he has had to decrease his hours from about 40 per week to an average of 24 because he needs to be home to help Carrie and the couple's four children -- Matthew, 7, Sara, 9, Emily, 13, and Katie, 16 -- get off to school and to their activities. Katie has her driver's license now and Bill said that has been a saving grace.

Carrie asked Bill to tell the children about her disease because it was too hard for her to face them, she said.

"I couldn't do it, I knew I would break down," she said. Bill said the two older children know the gravity of the situation, but the two younger ones simply see their mother's health going downhill.

A home health care aid comes to the Ozburn house a few times a week and a physical therapist comes on a regular basis to help Carrie with range-of-motion exercises.

Volunteers from their church, Calvary Lutheran Church in Brookfield, regularly bring meals to the home as do parents from Underwood Elementary School, where Matthew and Sara are students.

Carrie cannot use her hands to make meals and said she is extremely thankful to those who have helped take care of her family, although asking for and allowing the help was tough, she said.

"It's really hard, I think that was the hardest thing for me, to accept help from others," she said. "I was always the one doing for others, but I'm so thankful."

Bill has built a wheelchair ramp to get Carrie in and out of their house and recently purchased a customized van that allows the Ozburns to take Carrie out to church and to appointments.

Carrie is 5 foot 10 inches tall, and picking her up and putting her in a regular van or car was just impossible, Bill said.

Bill said it was their good credit -- not his income -- that allowed the family to buy the van. The payments are more than their house payment.

"If they had judged me on the hours I work now, I would never have qualified," he said. "But this was necessary. We needed this van to get Carrie to church and out to her appointments. She needs to get out and see the kids perform in band and school concerts. There was just no question. We needed it."

Online group helps

Carrie has found immeasurable support, she said, through an ALS support group at Froedtert Hospital and through an online chat group through Massachusetts General Hospital. ALS patients from around the world can chat with one another.

Carrie is able to slowly plunk out letters on the keyboard to message her online friends. She said having the Froedtert support group and online friends helps her get through the long days.

"It's been really nice," she said. "There is a lot of emotional support and stories we share. But it's always sad when one of our regulars fails to show up. We all know what happened to them."

Bill, too has found support through the hospital's caregiver support group, which allows those who care for ALS patients to get together and share stories, tips, and sometimes just vent.

Bill keeps a positive attitude for Carrie and the family, she said, keeping up with his usual teasing and penchant for joking around.

But still, it is hard to live with what boils down to a death sentence.

Fighting back tears, Carrie said she wonders if it might be better for her family if she were to go to a nursing home.

"I think it would be easier on them," she said.

Bill throws her a look, flashes his smile and says, "Not a chance. You're stuck with us."

Carrie said if she could go back and do anything, it would be the simple things where she would find the most joy.

"Driving my kids around to all their activities, making a meal, doing for my family -- that's what I'd like to do again," she said.

She also said she spends a good deal of time praying for her family and friends.

"I pray that our kids are safe," she said, "that nothing happens to Bill and that they'd find some way to stop this disease