By JENNIFER BARTEN
Posted on Saturday, July 10, 2004 1:05:31 PM
Garden City Telegram - Garden City,KS

Last year on Dot Munyan's birthday, she found out her life was going to change forever. On Aug. 22, Munyan, 53, was diagnosed with Amyotrophic Lateral Sclerosis, more commonly known as Lou Gehrig's Disease.

"I'd been having problems for about three years," she said. "It started with me tripping, then I started getting weaker and started limping. I didn't think it was noticeable but a couple of nurses here (at the Mexican-American Ministries clinic where she works) mentioned it."

In 2001, Munyan said she had a fall that sent her to the hospital for stitches. That's when she knew something was seriously wrong, and it was more then her just being clumsy. When no one here could figure out what was wrong, she went to the Mayo Clinic in Minnesota. That's where she heard the life altering news.

"I don't have much independence anymore," she said. "I had to move into a handicap accessible apartment and am permanently in a wheelchair."

The disease started in her left leg about three years ago and has moved into the right leg within the last six months. Munyan said her legs are now just dead weight.

Munyan used a cane for nine months until she had another fall. Then she went to using a walker from January to May. She is now in a scooter.

"Until I got the scooter and the van, I was very limited," she said. "The scooter has been a Godsend."

Now she must rely partly on motorized tools, and on her family and friends, who help her get through the days. A benefit is scheduled for July 25 at First Christian Church to help her raise money for a new wheelchair.

According to Munyan, the disease eventually could affect her lungs, her ability to swallow and her arms.

"The hard part is that I don't know how it will effect me and that there is no way to know how fast it will affect my whole body," she said. "The most frustrating part, though, is trying to find parking spaces and bathrooms that are handicap accessible."

Munyan has to go to the Kansas City area once every three months to track the progress. There are 10 areas that are tracked when she's there, including physical therapy, respiratory and speech. If she's having problems, health workers there give her ideas on things that might help. She said they are amazed every time that she still is working.

"My boss told me that I could stay and work as long as I wanted to," Munyan said. "Most of the job is seated, which is fortunate. I can't imagine not working."

Even though Munyan is having to learn a whole new way of living, she still is trying to help others and looks at the diagnosis in as positive a light as possible.

"I think that the whole reason I got this disease is to educate people about the disease and let them know that it can happen to anyone and that there is no cure," she said. "I'm going to start a support group for people with chronic illnesses and their families."

Munyan said it would help her to listen to other people who have gone through the disease. She has been in support groups before and said they have helped.

"I was in a codependency support group," she said. "It really helped me through a lot. I know what they can do to hear others talking. You realize that you're not alone and you know that someone is worse off then you. It really helps."

Even though Munyan is wanting to start a support group, she is happy to have the support of her family and friends close by.

"My parents have been extremely supportive," Munyan said. "They live in Syracuse, and they're there to help if I need anything. They do things that most people wouldn't think about, like putting a ramp up to their house and making the bathroom door bigger."

One of Munyan's daughters moved home from Oregon to help take care of her. Her other daughter and son also have been supportive.

"My daughters take me shopping and help around the house. My 4- and 5-year-old grandchildren also try and help out by taking out the trash and vacuuming," she said.

Besides just family, her church also is trying to help her by having a benefit for her on July 25 at the First Christian Church. They are hosting the benefit for Munyan because she needs a better wheelchair.

"I need something that will adjust to me," she said. "I'm looking ahead because I know that the scooter won't be enough after awhile, and I'm having difficulty getting the money to get the wheelchair that I need."

The benefit will include a hamburger and hot-dog feed with homemade ice cream. It also will include a raffle, and Barry Ward is going to sing. The benefit is scheduled to start at 5:30 p.m. Tickets for the event are $5 in advance and $6 at the door. The church office is selling tickets for the benefit.