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Family finds hope in tough times

Alice Collinsworth
The Edmond Sun

EDMOND — It’s been kind of a rough year for Edmond resident Tony Blankenship and his family. Partly cloudy, you might say, with periods of sunshine.

Blankenship, 45, has Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig’s disease. It’s a relentless disease, progressively taking away neuromuscular function. Blankenship has had to adjust to life in a wheelchair, relying on a respirator to enable him to breathe.

Life didn’t turn out quite as the couple had hoped. They met in 1994 when Blankenship applied for a job at 7-Eleven and his interviewer happened to be a woman named Joyce. She eventually would become his wife.

“I went back (after the interview) and told my friends I had just interviewed the best-looking guy I’d ever seen in my life,” she said in an interview earlier this year. Blankenship got the job and the two were employed by 7-Eleven for a number of years. His wife, Joyce, still continues to work there.

Blankenship first noticed a limp in 2000, but doctors first thought he had Monomelic Amyotrophy, a benign form of muscular dystrophy. In 2003, the diagnosis was changed to ALS.

“It’s a bad disease,” said Dr. Michael Tribbey, neurologist at the Mercy NeuroScience Institute.

According to the ALS Association, about 5,600 people are diagnosed with ALS in the United States each year. The incidence is about two cases per 100,000 people.

The disease is progressive, starting in the motor cells of the cortex and the spinal cord, Tribbey said. Patients usually notice the first symptoms of weakness in an arm or leg. As cells die throughout the body, muscular function fails.

If there’s any good news, it’s that the disease itself usually does not involve pain, Tribbey said. But it does progress inevitably through the body, causing incapacitating symptoms. Blankenship said he does have some pain as a result of being in one position in his chair or bed for long periods.

Adding insult to injury, an October fire in the family’s home damaged the stove and kitchen cabinets. The roof already was leaking and Blankenship, in his wheelchair, wasn’t able to navigate the doorways in their home.

Then, thanks to generous readers after an October story in The Edmond Sun, the Blankenships’ roof was repaired. Workmen remodeled Blankenship’s living quarters, adding a widened doorway from the bedroom to the living room. New, smooth floors were installed. The insurance company repaired the kitchen. Life got easier.

“It’s great,” Joyce Blankenship said of the home improvements. “He can get through the doorway a lot better. Even the acoustics are better.”

Joyce Blankenship said she can hear her husband call for help when she’s busy in the living room or kitchen.

“They complain about my TV now, too,” her husband said with a laugh. “They’re always saying, ‘Turn that TV down!’”

But there was another setback. While remodeling was under way, Blankenship spent nine days in Southwest Medical Center, battling infections.

After his course of treatment, Blankenship was able to return home in time for the couple’s 10th anniversary in early November. They were greeted with a banner made by their three children, complete with misspellings, and the family celebrated with a Mexican dinner. It was good to be home.

But their daughter Shelby, a second-grader, had a question. She couldn’t understand why her dad came home from his treatment still in his wheelchair. She thought his trip to the hospital would provide a cure.

“That’s what’s heartbreaking about it all,” Joyce Blankenship said, adding that 8-year-old Shelby is going through the process of understanding her dad’s illness and coming to grips with his possible death.

“She asked me if I was nervous about dying,” Tony Blankenship said. “I said, ‘No, I know I’m going to heaven.’ But then I asked her if she was nervous about my dying, and she said yes.”

All in all, though, the family is coping well. Blankenship plans on having a permanent feeding tube inserted soon to help with his nutritional needs. At least 15 people came to celebrate Christmas in the newly refurbished family home. The family won a neighborhood award for their holiday decorations.

The couple said they want to express appreciation for all those who have pitched in to help, and especially those who made improvements to the house.

“So many people have offered to help,” Joyce Blankenship said. “Everybody has been so wonderful. People from the school brought food while Tony was in the hospital, and many others have offered to help. People ask what we need, and I say I can’t think of a thing.”

Tony Blankenship, however, admits he has a few worries on his mind. When he’s not enjoying his television shows, perusing the Internet or taking part in his fantasy sports leagues, he wonders what will happen next.

The family home does not have lift equipment in the bathroom, so he relies on sponge baths provided by family members or health-care workers. He also worries about outside things like gutters and eaves while he’s inside, unable to take care of them.

And he still has one special dream: The revival of a metro-area sports card show that benefited ALS research.

Joyce Blankenship started the card show back in the 1980s as part of a benefit for the Muscular Dystrophy Association. ALS is a disease related to Muscular Dystrophy, and both Joyce and Tony were active participants in many MDA fundraisers.

“The whole thing is so ironic,” she said in an October interview.

In its third year, the card show was renamed the Bing Hampton Sports Card Show in honor of the former owner of Oklahoma’s ’89ers baseball team who died of ALS in 1991.

The two-day show ran at the State Fairgrounds for many years until 2005, raising an average of $22,000 a year, said Marketing Director Sandy Huse of 7-Eleven. The show was forced to close because of declining attendance and lack of vendors.

“I’d like to see it one more time,” Tony Blankenship said. “Maybe we could get some big name like Emmitt Smith or Troy Aikman or Marcus Allen to come.”

Huse said 7-Eleven does nine fundraisers a year for MDA, including a mud volleyball tournament, a baby pageant and a fishing tournament. In 2007, the organization is planning an “Equestrian Cup,” featuring Oklahoma foods and wines and horsemanship events.

Huse said she is glad some of the money raised is going to support the Blankenships, who have been so active in MDA fundraising themselves.

“We love them so much,” she said. “We wish them all the best. They’re just ‘give-give-give’ type people. It has been a real enlightening experience for us to see how the MDA really does help their patients.”

The MDA submitted a request to ABC television’s “Extreme Makeover: Home Edition” earlier this year, but the Blankenships haven’t received a reply.

Still, they keep smiling. Daughter Shelby is maintaining her positive attitude, and her classmates at school are joining her in prayer for her dad.

“She told me, ‘Mommy, don’t ever give up hope,’” Joyce Blankenship said.

(Alice Collin˚sworth may be reached via e-mail at acollinsworth@edmondsun.com.)

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