March 1, 2014 2 Comments
We are thrilled to share the latest edition of The Mobility Project’s consumer publication with you, as their 2014 publication features an interview with LASCI founder Bert Burns! In the story, Bert shares his perspective on “What It’s Like” regarding a topic that few people want to discuss but we all personally understand. Bladder & bowel management in a busy day is a fact of life and one that can impact your life dramatically if you don’t employ a consistent process within your care regimen.
Below are the highlights of Bert’s personal story written by TMP editor Laurie Watanabe. To read all of the personal stories on “What It’s Like,” pick up a copy of the 2014 consumer edition of The Mobility Project, available as a free publication at every Abilities Expo event.
When asked what a typical day in his life is like, Bert Burns first mentions his family.
“I have twin sixth-graders, so first thing in the morning, my wife Joy and I get them up, get them breakfast and off to school,” he says.“We do carpools with a couple of other people.” Then it’s off to the garage, where Bert’s exercise equipment is set up. After putting in about an hour’s workout, “I get into the shower and then head into work.”
In the afternoon, “I usually take off a little early if I can, because the kids play soccer or basketball or tennis, depending on what season it is. My son plays football and baseball, and I help coach both. Now he plays soccer, and I have no idea of soccer rules, so I just watch.”
On other afternoons, Bert — who founded UroMed, a urological supplies company in Suwanee, Ga. — can be found at the kids’ school, volunteering as a math tutor. In the evenings, “We usually all have dinner here together and work on homework together and put the kids to bed. And then my wife and I have some time together.”
Listening to his cheerful Southern drawl, it’s easy to imagine Bert shrugging at what a happy routine it usually is.
“It’s a pretty full day,” he says, “but pretty similar to everybody else’s day out there in the real world. I’m just doing mine from a chair instead of walking.”
A Little More Time Consuming
Bert has been using a wheelchair for more than 30 years, ever since the car he was in was struck by a drunk driver who ran a red light. At age 20, Bert was a C6-C7 quadriplegic.He did his five months of spinal cord injury rehab at Lucerne Spinal Center in Orlando, Fla., which Bert says was a “model center” at the time. He was introduced to wheelchair sports during his stay and became an accomplished wheelchair racer and 1992 Paralympic gold medalist. Today, the workouts in his garage still consist of pushing his racing chair, on a set of rollers, for 12 to 15 miles per session.
In terms of the impact of his injury on his daily life, Bert says, “I use a wheelchair; I use hand controls in my car. Whenever we travel somewhere, in any major city you can get a rental car with hand controls.”
He also uses urological supplies every day. “For my urological needs, I use what’s called a suprapubic,” he says. “It’s a Foley catheter that goes directly into your bladder. There’s a hole a couple of inches below your belly button, and the catheter goes in there and stays in there and drains into a leg bag.”
When it comes to his bowel regimen, Bert admits, “My first few years sort of revolved around when I had to do my bowel program.” Today, though, he says, “My bowels are paralyzed, but I got enough sensation back to where I know when I need to go. So I can empty my bowels pretty well.
That didn’t come back for 10 to 15 years, and it was a big thing when it did. I can go like everyone else can, just like normal, but I now can actually tell when I need to. That helps me not to have accidents.”
Bert learned bowel and bladder care while in rehab. “In the hospital I was learning to cath, but I didn’t have the hand function to catheterize real well, so they offered the option of having the suprapubic so all I had to do was empty the leg bag once or twice a day,” he says. “I did have the hand function to reach down and unclamp the leg bag and drain that into a toilet.”
Bert adds that his hand function has since improved: “I can cath now if I needed to, but I’d have to have a bunch of operations to change back to a regular [catheter system]. So I keep what I’ve got, and it works real well for me.”
His bowel and bladder program doesn’t prevent him from doing what other parents are doing, which includes driving from home to work to wherever his kids happen to be practicing or playing that day.
“The big difference is everywhere I go, I have to take the wheelchair apart, put it over the back of the seat,” Bert says. “When I get to where I’m going, I have to pull the wheelchair back out, put the wheels back on. And if I get the urge to have to go to the bathroom, it’s more time consuming for me. My house is better, but if I’m at work or at a baseball field, I have to find a restroom that’s accessible. Sometimes that can be kind of a pain, but it’s always worked out.”
To Prove to Myself I Could Do It
Thanks to some creative thinking and planning, Bert was able to be just as hands-on when the twins, William and Emma, were born.
“We had a changing table made,” Bert says. “I could roll up under it and change diapers.” For the twins’ cribs, “We took a regular crib, put it on legs, made it higher so I could roll under it, then [put the side of the crib] on hinges so it opened like a door. I’d roll up under the crib, open the door, and slide the baby into my lap. It worked out great.”
The right clothing helped, too: “My kids wore overalls for the first three years of their lives because I could reach out and grab an overall and pick them up and put them in my lap. So much easier than having to scoop up a baby with my [quadriplegic] hands.”
Bert was also fond of taking the babies to the mall — sometimes both at the same time. After parking at the mall and changing the twins into fresh diapers in the car, Bert would load the kids onto his lap and off they’d roll.
Shoppers would do double-takes, wondering if the man who’d just rolled by was holding a doll in his lap or a real baby. Taking the kids on outings provided great bonding opportunities, but Bert — by then a successful business owner and accomplished athlete with international credentials — did it for another reason, too: “To prove to myself I could do it.”
In 2012, the Burns family went to London for the Paralympic Games, where the kids “got to meet a bunch of athletes, some I used to compete with. They got to see wheelchair racing, and my son was like, ‘So that’s what you used to do, Dad?’ And I said, ‘Yes, sir.’ And he asked, ‘Did you win?’ And I said, “Well, sometimes I would, sometimes I wouldn’t.’”
Bert admits of his kids, “They’re 12 1/2 now and are starting to understand. I’ve always wondered if eventually they would be embarrassed that their dad’s in a wheelchair.”
During a winter trip to Orlando, Bert said William remarked, “Dad, being in a wheelchair isn’t all bad.” William went on to list several “good things,” including better parking spaces and not having to wait in line so long at Disney World.
“That’s a good way of looking at it,” Bert told his son.
That perspective, Bert adds, is what he shares with new wheelchair users who wonder how to cope with all the changes in their world.
“I tell folks it takes time,” Bert explains. “If you’re at my level of injury or below, if you’re a paraplegic, you could be 100-percent independent real soon, within a year. Things take a little longer, things will always take a little bit longer. Before I was injured, I’d get up in the morning, shower, shave, dress, get out of the house in 30 minutes. After I got paralyzed, that took two hours.
“But then it took an hour and a half. Then it took an hour. I finally got it down to about 30 minutes. Now that I’m getting a little older, it takes me about 45 minutes. But it doesn’t take much longer.”
Editor’s Note: Bert Burns is the senior market manager for UroMed. He also serves as an ambassador and customer advocate for Life After Spinal Cord Injury (www.facebook.com/LASCIonline ),UroMed’s non-profit motivational program. Headquartered nearAtlanta, UroMed is a leading provider of single-use catheters, urological and disposable medical supplies, including intermittentcatheters, closed system catheters, condom catheters, pediatriccatheters and continence care products.
About The Mobility Project
The Mobility Project (TMP) strives to help empower the community of wheelchair users, assistive technology users and their families by promoting dialogue and sharing ideas that can advance their many abilities and opportunities. TMP works to provide practical, timely information on assistive technology, accessibility, health-related resources, clinical conditions, advocacy and other topics of interest to this community and culture — while serving and appreciating people of all age groups and levels of ability. www.themobilityproject.com
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