Dreaming of the future

Edmond man battles degenerative disease of the nerves

Alice Collinsworth
The Edmond Sun


SARAH PHIPPS/The Edmond Sun Tony Blankenship plays with his son, Austin, in their Edmond home Friday affternoon. Blankenship suffers from Amyotrophic Lateral Sclerosis.


EDMOND — When 45-year-old Edmond resident Tony Blankenship wakes up in the morning, he can’t get out of bed.

A victim of ALS — Amyotrophic Lateral Sclerosis, or Lou Gehrig’s disease — Blankenship must wait for his wife or another friend or relative to come and help.

So he lies in his hospital-style bed and listens to the constant soft hiss of his ventilator equipment. Each day, his body grows a little weaker. Now he can’t breathe without mechanical support.

As he waits, he dreams of somehow providing a better life for his wife and children. Their 14-year-old home in Park Lane Estates has termite damage and a leaky roof, not to mention that it’s not “handicap accessible.”



The diagnosis

Blankenship and his wife, Joyce, met in 1994 when he applied for a job with 7-Eleven; Joyce happened to be the supervisor who interviewed him.

“I went back and told my friends I had just interviewed the best-looking guy I’d ever seen in my life,” she said.

Blankenship was in perfect health then, and the two enjoyed a first date on the golf course. It didn’t take long to fall in love. They married in 1996.

“Our plans were to grow old together and golf every day,” she said.

And things went well for a while. Both worked for 7-Eleven, and they volunteered regularly for Muscular Dystrophy Association fundraisers. Some of those proceeds were earmarked for ALS, a related disease.

“The whole thing is so ironic,” his wife said.

By the year 2000, the couple had two children, Shelby and Bryan.

Then they noticed a slight limp in Tony’s right leg.

He originally received a diagnosis of Monomelic Amyotrophy, a benign form of muscular dystrophy.

“We thought it was going to affect only my right leg,” he said. “I wasn’t overly concerned.”

But other problems developed, and the diagnosis was changed to ALS in 2003.

ALS is a relentless degenerative disease of the nerves, usually striking people between the ages of 40 and 70. The cause is not fully understood, and treatment options are limited. It usually progresses quickly.

About that same time, the couple learned Joyce was pregnant with their third child, Austin, and they became recipients of those MDA and ALS fundraisers.



Living day to day

Now Blankenship is a wheelchair-user. He’s unable to use his right hand or consistently hold his head upright. Joyce’s sister lives with the family, and Tony’s mother and sister live nearby. Hospice workers come by regularly.

One of those people helps Tony out of bed each morning. They take him to the bathroom, bring him breakfast, help him into his wheelchair.

He spends most of his time in the bedroom, because that chair barely fits through the doorway. A larger, better-equipped chair sits in the garage, unusable because of its size.

So Blankenship plays computer games or watches TV to pass the time. The children stop in for visits.

He said it’s hard to be dependent on the constant help of others.

“You don’t want to have to rely on people, but you get used to that. It took me a while, though — the first time I had to have help going to the bathroom, my brother helped me. I broke down and cried, and he did too.”

Most days, though, Blankenship is in good spirits. He keeps in touch with numerous friends by e-mail, and he likes nothing better than sharing a good joke and making people laugh.



Another setback

It seemed like a cruel joke, though, when fire broke out in the family’s kitchen earlier this month.

Joyce left a pot of water on the stove when she went to help Tony in his room, and the overheated pan caught some nearby grease on fire. Little Austin, not yet 2 years old, came crying to get his mother’s attention.

Of course she called 911, but getting her husband out of the smoke-filled house was not easy.

His wheelchair stuck in a doorway, and he ran over his ventilator hose in the confusion.

Firefighters arrived and everyone escaped uninjured, but Blankenship’s dream took a step back as the stove and kitchen cabinets were left with heavy damage.

The MDA submitted the Blankenship family for consideration on ABC television’s “Extreme Makeover: Home Edition” show last year, but there has been no reply so far.

Joyce still works for 7-Eleven full time, and said the company has been instrumental in providing help, but there still are many challenges ahead.

The couple approaches those obstacles with love and laughter, looking forward to their “120-month” anniversary coming up soon.

And at the end of each day, after being helped back to bed, Blankenship still cherishes the same dreams for the future.

“Through it all, I’ve kept myself up mentally,” he said.
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