ALS slows but doesn’t diminish Helen Wade

By Hannah Buchanan

living@jacksonvilleprogress.com



Helen Wade of Jacksonville can’t enjoy the things she once did, such as chips and salsa or giving a kiss to her granddaughter.

Salsa irritates her mouth and throat, and she can’t pucker her lips to form a kiss like she used to.

Helen has Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease. Although it affects people differently, the progressive disease which is named after the famous baseball slugger who had it, targets brain nerve cells and the spinal cord, and eventually the ability to control muscle movement is completely lost.

Helen said she noticed symptoms which affected her speech – thought to be a bad cold and bronchitis, December 2005.

“I started to slur. I wouldn’t go to the doctor at first,” she said.

Then family members started to listen and take notice, said Helen’s daughter, Wendy.

“It usually takes a long time to diagnose it. Doctors do a series of tests to rule out other possible diseases,” Wendy said.

At first doctors thought Helen suffered a stroke or heart attack.

“I went through a series of tests. They sent me to a neurologist in Tyler. He had me diagnosed within a month. He was an aggressive doctor, and I was an aggressive patient. I was diagnosed two days before my birthday in August,” Helen added, as tears welled up in her eyes.

Wendy said crying spells are indeed part of the disease.

“I take meds (Rilutek) ... it’s not so bad,” Helen added.

Wanting a second opinion, both Helen and Wendy searched for an ALS clinic which could help Helen.

“I was trying to find ALS clinics. I found one in San Antonio, but they said they wouldn’t be able to see her until October (of 2006). I found another in Houston. They (The ALS Association Greater Houston Area Clinic at Baylor College of Medicine) were able to see her the day after Labor Day. She was really lucky to have gotten in so quickly,” Wendy said.

At the center, more tests awaited Helen.

“He (the doctor) did confirm the ALS. I’m doing so well I don’t have to go back until February (2007). Everything’s happened so quickly. I’m getting all this help, and it’s not costing anything,” Helen said.

Wendy said a national ALS association sponsors the clinic, and all the doctors and professionals there donate their time to conduct research. A variety of professionals which includes a neurologist, physical therapist and nutritionist are also on hand.

“They coordinate everything ... they even found a home-health service in Tyler, so we don’t have to go back to Houston so much... (patients) can go every month if (they) feel like (they) need to go,” she said.

Wendy said doctors and other health professionals are still researching the uncommon disease, which affects more than 5,000 people a year.

“There’s at least two other people in Jacksonville who have it. I want everybody to know about ALS because so many people do not know,” Helen said.

Helen said she is even involved with research at the center.

“It may not help me, but if it helps somebody else, it’s worth it,” she said.

And the woman once involved in the community, with such organizations as HOPE, Inc. and Woodmen of the World and local civic clubs is now “taking it easy,” Wendy said.

“She’s had to limit what she can do. Ten years ago, they (doctors) would have told you to go to bed,” Wendy said.

“I can’t work ... I couldn’t communicate. I get tired real easy (but) I’m still involved in as many things as I can, (and) I’ve learned to say things different,” Helen added with another grin.

Helen said she also wanted to thank the community for “their concerns and prayers.”

“I didn’t know I had so many friends,” Helen said, as tears started to flow again. “They’ve been really supportive. I get cards almost every day.”

And through it all, Helen said she has remained strong.

“I’ve learned to endure. I wasn’t going to give up. God’s doing this to show people how I can handle this situation.”

Helen and her husband, Stanley, have two children, Wendy and Greg; daughter-in-law, Elizabeth and one grandchild.



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