It’s hard not to be amazed by Doug Maley — and that’s the last reaction he wants to evoke.
Eight years ago, Maley almost died twice, and doctors still disagree about how it happened and what caused it.
No matter the diagnosis, the results were the same: When he regained consciousness after the first episode, he was unable to speak, write, walk, or do anything for himself. As weeks passed, those skills began to return in varying degrees.
Now, after years of effort and exercise, he is more independent, yet not independent enough to suit him. He sometimes needs a walker, and occasionally a wheelchair, because his equilibrium is not reliable. His speech, while understandable, is impaired. He still chokes sometimes and has a seizure or two a month, if he gets overtired. But, compared to the times when doctors feared he would not live, he is measurably much improved.
The road to improvement is what Maley wants people to know about him and to use in their own ways.
During an interview late last month, Maley emphasized that if there were to be an article about him, it needed to provide hope and encouragement to others struggling with surviving brain traumas and strokes.
Maley knows that with dedication and determination — and a strong network of family and friends — amazing improvements sometimes are possible.
Now, he and his wife, Teresa, are searching for additional rehabilitation regimens to help him regain even more of his former self.
The old Doug Maley, who had worked for 28 years for KP&L/Westar, was articulate and an athlete to the core. He played sports and exercised in a variety of ways to stay in shape; it was important to him. He watched what he ate, and no one considered him a risk for an aneurysm or a heart problem. Unexpectedly, he experienced both.
On May 27, when the Maleys were interviewed, they were planning for an appointment at Memorial Hermann/TIRR hospital in Houston to see whether there were any options available to help him improve. The rehab unit’s motto is “Breakthroughs Every Day,” Teresa said, and a breakthrough was given to Buffalo Bills’ tight end Kevin Everett, who had been paralyzed and now is able to walk because of the treatment he received there. The Maleys were hoping and praying a breakthrough would happen for Doug.
The only aspects of the old Doug Maley that remain untouched by his condition are his intelligence and the inherent perseverance that keeps him motivated.
“I know that I will never be like I once was, but my recovery has been over eight years and it’s kind of plateaued,” Doug said. “Hopefully, these people in Texas can give me a shot in the arm and maybe improve my balance a little bit and perhaps improve my speech.
“It comes and goes. As the day goes on and I get more tired, I lose my ability to speak and walk.”
He becomes more likely to have seizures or choke, too, Teresa said.
“I’ve had to give him the Heimlich maneuver probably 25 times,” she said. “The choking part is really, really hard.”
Bringing him out of the seizures and helping him up afterwards also is difficult for Teresa to maneuver by herself.
Doug’s health problems began when he went to St. Luke’s Hospital in Kansas City, Mo., in 2000 for open-heart surgery to repair an aneurysm and replace a heart valve.
He seemed to sail through the surgery.
“No one could figure out why someone who was 49 and took such great care of his body, this could happen to,” Teresa said. “... The surgery was a piece of cake, for open-heart surgery.”
Doug’s recovery went well for the first couple of days, until suddenly he could not swallow and became delirious.
“He just basically one day collapsed in my arms,” Teresa said. “That’s when they said, ‘Well, he’s not going to make it.’
“He just got very, very sick. Then he went into crisis. ...Anything and everything that could go wrong did go wrong. And that’s when he had his strokes, we’re pretty sure.”
It is believed that he had four strokes in St. Luke’s.
He spent weeks in the intensive care unit. For a time, he was not able to speak at all and, when he finally could hold a pen to try to write his thoughts, initially all he could do was scribble.
“After a week or so, he finally said to me, ‘What happened?’” Teresa Maley said.
Now, eight years later, his memory continues to protect him from the weeks in ICU.
“I don’t remember any of that,” he said.
Eventually, doctors released him from the hospital after 16 weeks, hoping that perhaps with time he would recover.
“My rehab was not very organized,” Doug said.
He had been home only five months when another crisis struck.
Teresa had gone to wake him before she went to her job as a counselor at Emporia High School.
“I couldn’t get him to wake up,” she said.
At Newman, Dr. Duncan saw that blood had accumulated in all of his extremities and realized there was a problem with the new mechanical heart valve. An infection had developed and the valve was waylaying his system with it.
This time, Doug was airlifted to Research Medical Center in Kansas City, Mo., where he was given last rites.
“He was so sick that time that they weren’t sure what they were going to do with him because he had to get better before he could have any more surgery,” Teresa said.
“I remember Father Pete,” Doug said of seeing Sacred Heart Catholic Church’s former priest at his bedside. “I remember the doctor telling Teresa ‘He probably will not make it.’”
“He just hung on and hung on and got a little bit better and a little bit better,” Teresa said. “He has a very strong will to live.”
For a time, the family encountered difficulties even finding a surgeon to take on the job of replacing the old valve.
In a 13-hour surgery, Doug received a cadaver heart valve to replace the malfunctioning mechanical valve, and began some initial physical, occupational and speech therapy. After seven weeks, he was dismissed to return home.
Now, Doug is living with somewhat of a double diagnosis. No one was entirely certain whether he’d had only strokes, developed myasthenia gravis, or suffered from a combination of both.
“To this day, we don’t know which came first and which has the most influence,” Teresa said. “Maybe we’ll know in Houston. ... The main thing for us to focus on is for Doug to have the best quality of life possible.”
Doug believes he has had strokes; he does not believe he has myasthenia gravis.
“It comes on gradually, not overnight,” he said of MG. “What happened to me occurred overnight. There was so much confusion and the doctors evidently said, ‘All right, he has myasthenia gravis.’ Well, maybe not.”
He has continued his own variety of physical therapy, with regular trips to Emporia Fitness to build his strength and keep in the best shape possible. A legion of family, old friends and new ones, has sprung up to help.
“The L-Cat people are just wonderful. They treat him just like family,” Teresa said. “They’ll come to the door and walk him out” when he rides the L-Cat to Emporia Fitness, which she says is “probably the best part of his day.”
Teresa’s direct supervisor, EHS Principal Scott Sheldon, also has become involved in Doug’s life, picking him up and taking him to EHS sporting events.
“They get to do fun stuff,” she said. “It keeps him happy; it keeps him smiling.”
“I have met a tremendous number of people that I can now call my good friends,” Doug said. “Some old, some new. I like talking to them. ... It feels like I’m worthwhile.”
He goes to Emporia State University to attend support group meetings for people with brain traumas.
Teresa’s aunt, Norma Nickel, also helps take care of Doug and gets him where he needs to be.
The Maleys’ children and their spouses — daughter Sara Olson and her husband, Nathan, and son Scott and his wife, Ashley — are frequent visitors. They go on vacations with the senior Maleys for fun and for support; when each shares some of the tasks, the load is lighter for everyone.
“From the time they came into our lives, those two have just been fantastic,” Teresa said of her children’s spouses.
All of them went out on Memorial Day weekend to celebrate Doug and Teresa’s 35th wedding anniversary. All were anticipating what might happen on June 9, when specialists were scheduled to meet with Doug and see what could be done.
“Probably the worst part of all of this is dealing with the frustration,” Doug said. “I lived for 50 years a normal human being. The last 7 or 8 years have been ... having to deal with the stroke.
“I want to stand up and walk a straight line like I used to do. I can’t do that now.”
On Wednesday, after meeting with the brain trauma and stroke specialists on Monday, Teresa sent out an e-mail synopsis of Doug’s prognosis from Memorial Hermann:
“The doctors gave us hope in the area of improving Doug’s speech, eyesight, balance and walking,” she wrote. “Their recommendation is that Doug start speech, occupational and physical therapy which can be done in Emporia. We will return home on Thursday, June 12, with renewed hope for improvement. ...
“We know that Doug will never be the same as before the four strokes eight years ago, but we are encouraged that he can work for improvement.”
Teresa had said before the trip that she was willing “to explore any avenue to make his life better.”
“He deserves that,” she said. “He works so hard, and he tries so hard.”
Her e-mail Wednesday closed on a positive note:
“If anyone can put their heart and soul into making progress, it is Doug Maley.”
Comments
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Posted by slipandslide (anonymous) on June 14, 2008 at 11:45 a.m. (Suggest removal)
what an amazing man!!
Posted by cheryl (anonymous) on June 15, 2008 at 9:30 a.m. (Suggest removal)
Doug Maley is one of the most inspirational people I've ever met.
Posted by kamaley (anonymous) on June 17, 2008 at 11:52 a.m. (Suggest removal)
It is my true pleasure to know Doug Maley and his family. They are all remarkable people. Teresa, Sara, Scott, Nathan and Ashley you are as blessed to have Doug in your lives as Doug is blessed to have you in his life!
Heart and prayers, Kim
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