ALS center celebrates fifth anniversary
By ADAM TORRES
Published: Thursday, August 31, 2006 6:49 AM CDT
E-mail this story | Print this page


When Theresa Medellin realized she was having trouble placing binder clips on documents at work, she figured she may have early signs of arthritis.

A few months later, Medellin, a Kansas City, Kan., resident, was beginning to have difficulty with the buttons on her shirt.

“My doctor asked, ‘Does it hurt?’ And I said, ‘No, it doesn’t hurt,’” Medellin recalled.

Her doctor referred her to a specialist at the University of Kansas Medical Center, and it was determined she was showing early signs of Amyotrophic lateral sclerosis, better known as ALS and commonly referred to as Lou Gehrig’s Disease.

“We caught it early on,” Medellin said.


Now, Medellin, along with other ALS patients in a three-state area, make regular trips to the ALS Association Center of Excellence at the University of Kansas Medical Center.

The center celebrated its fifth anniversary Monday with a special event. U.S. Rep. Dennis Moore and UG Mayor/CEO Joe Reardon paid tribute to the center and its staff.

“They make such an impact,” Reardon said. “They help people, but at the same time are doing cutting-edge research.”

Over a dozen ALS patients visit the clinic, which is run by the ALS Association Keith Worthington Chapter and the KU Medical Center, on Mondays and receive a variety of services. Patients can visit therapists, dieticians, and social workers and receive a variety of other services.



Since the center opened in 2001, it has seen a 52 percent increase in the number of patients who attend. Last year, 287 individuals with ALS visited the center. The facility serves patients from all of Kansas and Nebraska and western Missouri.

Patients are not only receiving treatment, they are also helping find a cure for the disease, according to Dr. Richard Barohn, medical director of the center and chairman of the department.

“Most of the patients with ALS want to help find a cure and agree to participate,” he said.



Many of the trials look at how to slow down the progress of the patients’ degeneration, Barohn said. Researchers still have been unable to determine how the condition is caused.

“It isn’t genetic,” he said. “We’ve recently sent blood samples from patients to researchers to look at their DNA and see what is occurring.”

Middle-aged individuals are the most common group to get the disease.



“We do not see it in children,” he said.

The condition first takes control of patients’ arms and legs, and ultimately, their breathing and eating ability. Those diagnosed with ALS usually live from 3 to 10 years. Baseball legend Lou Gehrig died from ALS in 1941 after being diagnosed with the disease in 1939.

“The speed at which it progresses varies,” Barohn said. In Gehrig’s case, the progression was shockingly fast. He had a banner season in 1937, but was visibly slowed in 1938. By early in the 1939 season, Gehrig was barely able to jog onto the field.



With centers like the one at KU Med, research can be done and hopefully a solution will be found.

Medellin said she gets a variety of assistance from the clinic, from therapy to counseling.

“They always make you feel good,” Medellin said of the center’s staff. “Whenever I leave, I get hugs.”



Medellin has learned there are things she is physically unable to do.

“The things I cannot do any more, I let go off,” she said. “Things I can still do, I do. It just might take me a little longer.”

Medellin noticed it was getting harder to talk. She realized it was because she no longer works and does not interact with as many people.



“I help my vocal cords by talking out loud,” she said.

Medellin said her grandchildren always help her out too.

“I let them,” she said. “My son was helping me and my grandson saw we were having trouble. He grabbed my other hand and helped too. I will even let them help feed me.”



There are some limits to what she will let her grandchildren do.

“I wont let my granddaughter help me with my makeup,” she said, laughing.
http://www.kansascitykansan.com/arti...news/news2.txt