ALS slows her down but can't touch her zest
 

ALS slows her down but can't touch her zest
BY KAREN SHIDELER
The Wichita Eagle
Pamela Rayer's way of dealing with the disease that will someday kill her? A smile. "Every morning, she wakes up with a big grin," says Randy, her husband. And with that approach to life, he says, how can those around her react any differently?

Rayer, 46, has amyotrophic lateral sclerosis -- also known as ALS or Lou Gehrig's disease. In January 2001, when doctors diagnosed her disease, she was told she had a life expectancy of two to five years.

The disease, which attacks the nerve cells responsible for controlling muscles, has weakened her arms and legs, and a power wheelchair is her usual transportation now.

But she still lives with zest. She wants to see her four daughters graduate from high school (three have) and looks forward to her first grandchild (due in November). She still works when she can at Rayer's Bearden Stained Glass and Gifts, the store on West Kellogg that she owns with Randy.

And recently she took on a fight that could help other women who are disabled.

In September, after appeals and a hearing, she got Medicare to agree to pay for her injections of Lupron, which she gets every three months to suppress heavy menstrual flows.

Her only alternative was a hysterectomy, a risky surgery given her health.

"So I have opened up a door for women like me who are disabled and can get the shot," she says, noting that it also could help women who are quadriplegic, for example.

She wasn't as successful in a second battle with government.

She admits that she and a friend parked in a "yellow line area" -- a no-parking area --after being unable to find a van-accessible handicapped parking place. Rayer called in to fight the resulting traffic ticket, arguing that cars were parked in the van-accessible spots and people who didn't appear handicapped were using the spots.

Rayer was told the ticket would be dismissed -- but she says the dismissal didn't solve the original problem of not enough handicapped spaces. The woman she dealt with told her: "I know, Pam, but you're not going to change it. Just stay out of the yellow lines."

Randy and their daughters say Rayer's sense of humor and love of life have taught them all what's important in life.

In October, doctors recommended Rayer get a feeding tube, because of weight and muscle loss. She and Randy decided against it because she can still swallow without choking, though eating takes longer than it used to.

Six weeks ago, she decided she wanted to try walking again. With the aid of a brace on her foot and a four-wheeled walker, she sometimes does.

Doing that, she says, has strengthened her hands enough that she can brush her own teeth again, an accomplishment she delights in.

Rayer has made all sorts of accommodations in the past five-plus years, but that's OKwith her.

"Life continues, but just differently," she says.

About ALS

The life expectancy of an ALS patient averages two to five years from time of diagnosis, but about 20 percent of people live five years or more. As many as 10 percent will survive more than 10 years, and 5 percent will live 20 years, the ALS Association says.

A Wichita support group for people affected by ALS meets the first Thursday of each month. For information, call 316-612-0188.

Reach Karen Shideler at 316-268-6674 or kshideler@wichitaeagle.com.