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Deondre Jones was just a toddler when he was visited by the late Al Muilenburg, founder of Muilenburg Prosthetics, at Texas Children’s Hospital in the fall of 2003. Deondre was recovering from a bilateral above-knee amputation caused by meningococcemia – a bacterial infection of the blood.
“Mr. Muilenburg reached out to us then to let us know they were there for us when he was ready for his prostheses,” Deondre’s mother, Mary Jones, said. “Mr. Muilenburg made Deondre’s first prostheses in 2004, and laminated it with Deondre’s favorite toy character, Bob the Builder.”
Still a patient of MPI, Deondre, 21, is currently seen by Ted Muilenburg, CP.
For many years, Deondre relied on stubbies for mobility. “I got used to the security of stubbies because there were no knee joints, so I didn’t have to worry about falling. I was fitted with a mechanical knee, but I just didn’t like it.
Ted thought Deondre would be a good candidate for the C-Leg, which offers, among other benefits, a high degree of stability by actively controlling and adjusting swing flexion resistance while the knee is in motion. This ensures that the proper amount of resistance is in place to enable recovery in the event of a stumble. A control feature also makes walking backwards safely possible.
Ted fit Deondre in October 2020 and it was met with success. “I’ve been wearing them every day since. I’m not afraid of falling anymore and I’m focusing on being more fit,” Deondre said.
“He’s a smart young man,” Ted said. “His mom is extremely proud of him and I’m proud of him, too.
Deondre is a sophomore at Texas Southern University, majoring in kinesiology and sports and fitness management. “This is now my passion,” he said. His long-term goal is to work in adaptive physical education.
While he was growing up, Deondre thought music would be his career. He learned to play base drums and cymbals in the third grade and eventually became a member of the Phunk Machine marching band, well-known in the drumline community.
His mother recounted that when Deondre was younger, he had to do a school report of people he admired. “One was his band teacher and the other was Mr. Muilenburg because Mr. Muilenburg helped people who needed prosthetics.”
“Band was a thing in high school and I enjoyed it,” Deondre said. “But as I was watching more and more sports, including the Olympics and other events, I realized that was my interest.
However, music is not totally out of the picture. Deondre recently purchased a piano, which he enjoys playing.
“Deondre’s come a long way,” Mrs. Jones said. “They said he would be in a wheelchair the rest of his life and he didn’t do that; they said he would be on crutches, and he didn’t do that. Instead, he chose to walk. He is very strong minded and never complained.
“People come to me and say he is such an inspiration. I’m so proud of him, very proud of him.”
Recently I was challenged by one of my patients from another country, who lost both his hands, to make one of his myoelectric prosthetic hands work with a touch screen phone. I am sharing this story as what I learned can benefit others who use upper extremity prosthesis.
While shopping in a mall, someone had shown my patient touch pads that could attach to a winter glove enabling phone use without taking the glove off. We ordered the touch pads online but were disappointed to find out they would not work unless the other end of the pad, which is metal, was touching skin under the glove. Attaching the pads to his vinyl glove on his prosthetic hand would not operate his phone because he had no skin under it.
I contacted several people and manufacturers to see if there was anything available to make a prosthetic hand work with a touch screen but they couldn’t help me. I informed my patient of this and he said he knew I could figure out away to make it work and he was not going home until I did!
Stylus for those who use a Metal Hook
About that time I was informed about a new creation by inventor Gordon Adkins. He designed a inexpensive round, conductive rubber material, called a Smarter Stylus, that stuck to your finger and enabled you to more efficiently operate your phone. He also referred to it a disposable stylus as when it was no longer sticky enough to stick to your finger it could be thrown away.
It was brought to my attention because it would work well for upper limb amputees as they could stick it to their metal hook terminal device and operate their phone also.
Stylus for those who use a Hand
The Smarter Stylus was perfect for those who used a metal hook terminal device but what about those who use a hand. Apparently the metal is what made it work.
I went back to the original product I had ordered, the Digits, invented by Brian Shy. Through trial and error I found that I could solder about a 14-inch or longer wire to the inner metal part of the touch pad (Figure 4) and it would then operate the touch screen phone. It could then be attach it to the thumb of the prosthetic glove in thesame way it was designed to be attached to a winter glove, then installed on the myoelectric hand . The Digit Stylus and wire didn’t interfere with other hand functions and the wire could be wrapped around the wrist, out of site.
My patient with the myoelectric hands could now use his touch screen phone as he desired and he could return home happy.
Wife, mother, physical fitness buff, community volunteer, and business professional, Megan H. has plenty on her plate – and she loves it.
“I’m extremely active and I’m constantly on the go. I don’t like to say I can’t do something because of my leg,” said Megan, a below-knee amputee. “Like anything else in life, being an amputee is what you make of it. Drawing on your personal strength and the strength of those around you, you can do everything and anything you want to do.”
Megan became an amputee at 16, after a car accident. Right from the beginning, even though it was very difficult, Megan took a positive approach to her situation.
“I remember the surgeons were looking at options to rebuild my leg, but weren’t optimistic about my mobility. I told them to do whatever would allow me to run,” she said of her pastime then. “They said amputation was my best bet.”
Standing Strong with Family and Friends
“It’s a huge thing for anybody to experience that kind of trauma, but my parents didn’t lend it as much power as other people would,” Megan said. “I have people tell me even today, ‘I don’t know how you do what you do; I would have just wanted to die.’ That’s a weird thing to tell somebody. I didn’t think it was that bad. You can get through it, but respect it with the gravity it deserves.”
Megan said she was blessed to have supportive family and friends.
“My family told me it was another stepping stone and we’ll get through it. That’s how I was raised. My aunt is a Pilates instructor and right away she was working with me on core strength. The approach was that we are not going to let this thing take over. I also had support that helped at school. They arranged for me to have all my classes on the main floor. My classmates at St. Agnes Academy were wonderful and my boyfriend at the time was not fazed by it. St. Agnes Academy (all girls) had a few “brother schools.” St. Thomas High School was one and their student body was extremely supportive as well. I was very happy and surprised to be elected their homecoming queen!”
A Foot to Fit a Busy Life
Megan’s surgeon, Dr. Richard Haynes, recommended Megan see the clinicians at MPI for her prosthesis. She has been a patient for more than 10 years.
“MPI is so wonderful. Right after my amputation they tried to get me my (prosthetic) leg as soon as possible because they knew I was going back to school. They’ve just always worked for me,” she said.
Andre Martinez, CP, LP, is Megan’s prosthetist. “Megan is a very good patient and easy to work with,” Andre said. “She knows how to communicate about the fit of her prosthesis and what is working for her and what isn’t. That makes it easy for me to make sure she stays comfortable and active.”
The prosthesis Andre recently fit to her is held in place on her limb with a locking liner, finished out with a custom-shaped cover and a durable custom-painted protective covering. “Megan is really into working out so I gave her the Renegade® foot. It’s good for young, active individuals like Megan. She does very well with it,” he said.
A typical day for Megan begins at 5:30 a.m. when she heads to the gym for a rotation of fitness boot camp, plyometrics (exercises to increase muscle power), Pilates, spinning, and jumping rope. Then she is back at home caring for two daughters, toddler Grace and baby Caroline. “I’m a full-time mom but I also work part time as an account executive at Marie Flanigan Interiors. Grace is in school two days a week and I’m the room mother for her classroom.”
Megan also is the volunteer chair for the 2012 Pink Ribbon House, Membership Training Chairman at The Junior League of Houston, and served as vice president of Young Professionals Group for The Women’s Home.
“I volunteer a ton of my time, more than my husband would probably like, but I love filling my days; I love being busy.”
Sharing Experiences and Encouraging Others
A graduate of Texas A&M, Megan majored in early childhood education with a business minor. “I love being around children because they really enjoy life and that’s how I like to live. They are so innocent and fun and carefree,” she said.
Megan put her education and her experiences as an amputee to use as a development associate at Shriners Hospital. “That was wonderful because I got to be around kids in a similar situation. I loved working there. I’ve always wanted to be involved as an advocate to offer support to those who are going through a traumatic amputation,” she said. “I like reaching out to people who have stories like mine who might need some sort of connection.”
Don’t Stop Believing
Megan draws on her own experiences to encourage others.
“Being an amputee does not define or limit me as a person. I look back and often reflect on the sometimes painful steps that brought me where I am today,” she said. “If you want something badly enough, don’t stop taking those steps. There are modifications to just about every activity on this Earth and there are people who will hold your hand as you figure out what those modifications are. Believe in yourself and what you’re capable of – not as an amputee, but as a person. Limbs are there to help us grasp things more easily and to help us get places more quickly. Those of us missing limbs may be forced to work harder, but in the end, we are more than capable of doing what we set our minds to. Never stop believing in yourself. Don’t be afraid to challenge yourself and never consider failure as an option. Sometimes, all we need is a slight modification and before we know it, success is ours.”
Happily Ever After
After leaving her position at Shriners, Megan became the marketing services coordinator at Baylor College of Medicine in 2007, which was a very eventful year for her as she married Luke H. after a six-year courtship. Their destination wedding included nuptials in the Vatican at St. Peter’s Basilica’s Chapel of the Choirs. A reception for the 70 family and friends who attended was held at Rome’s fashionable 175-year-old Casina Valadier. For those who couldn’t travel abroad, another reception was held a few weeks later at the Petroleum Club. The couple honeymooned in Costa Rica where, typical of Megan, she zip-lined, kayaked, and took full advantage of the outdoor activities that beautiful country offers.
A year later, Megan and Luke were delighted to learn they would be parents.
“I got married November 23, 2007 and on November 23, 2008, I found out I was pregnant with Grace – so no wine at our anniversary dinner,” she exclaimed.
However, as an amputee, Megan had some concerns. “I was scared being pregnant and having children would be too difficult for me. That’s a lot of load bearing during pregnancy and then the question of how accessible I would be to my children once they’ve arrived,” she said. “Those questions answered themselves in time and I didn’t allow myself to be afraid of those new experiences. I have two beautiful baby girls and never once have I allowed my ‘disability’ to get in the way of my care and love for them. If Mommy needs to stay off of her leg for a day, we make it work. They are the primary reason I’m so glad that I’ve chosen to live with no fear. If I had chosen fear, I may never have allowed myself to be loved by my amazing husband and wouldn’t have Grace and Caroline here making me the happiest woman on Earth!”