Patient Stories: Amputee Coalition National Conference 2019

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So. Many. Stories. Attending the Amputee Coalition’s National Conference is like attending one big storytelling festival for those with limb loss and limb difference - along with lectures, exhibits, and a number of “first time” activities - such as swimming and dancing. With over 1000 attendees at the summer 2019 three day event, the theme of “People, Purpose, Passion” is one that resonates with the diverse crowd of amputees, family, friends and healthcare professionals.

The proceedings opened July 18, 2019 in San Antonio with a flair - featuring dancers in traditional costume performing a traditional dance to encouragement and cheers. Opening remarks featured a panel of those with limb loss and limb difference. Each had a story to tell. Motivational speaker, athlete, and amputee John Register shared his journey and uplifting message. These stories are often shared experiences of trauma and disease, fear and uncertainty, and ultimately triumph and hope! Shouts of “Amen”, cheers, whistles and clapping greeted the speakers as their words resonated in the meeting room. The message was clear. Become an educated consumer. Learn to be your own advocate and advocate for others. Create a new normal that leads to transformation. Share and learn from each other. Try new things. You are not alone!

A number of classes were available to encourage attendees to participate in their “First Swim” or “First Dance”, sponsored by OPAF. This organization believes in “Changing lives through adaptive recreation.” The First Dance class featured professional ballroom dancer and instructor Adrianne Haslet, who lost a leg in the Boston Marathon terrorist bombing. Lining up class members in two facing lines, she taught Rhumba and of course, the Texas Two-Step. The big closing event on Saturday is a dance party, and those who needed a little dancing class were being well prepared.

Breakout groups for amputees with similar levels of amputation were frank and personal, with people sharing anything and everything they could think of that might help the others. There were also classes for those who wanted to learn how to start or run support groups and also, the day before the conference started, Certified Peer Visitor (CPV) classes. Many attendees noted that if they had had access to a CPV, they would have been much comforted before undergoing their own amputation.

There were also several sessions that encouraged amputees to take the AC training courses to become a Lead Advocate - to be able to advocate at the local, state and federal level when called upon. Advocates play a vital role in changing policies for amputees - including insurance policies. A number of advocate roles are available, with an advocate program for non amputees also in the works. If you are interested in the training program and need more information, click here.

Attendees gathered together in groups and excitedly shared information about the exhibits, classes they had attended, or even their tourist experiences on the San Antonio Riverwalk. Colorful laminations featured glitter, unicorns, sports teams and other themes. Pediatric amputees who hadn’t known each other previously ran around in excited groups of instant new friends. It didn’t matter if you were upper or lower, bilateral, a toddler, a seasoned amputee, or still sorting out your first prosthesis and first steps, the ebb and flow of people and story filled the meeting spaces:

“Here, let me get that for you. We have to help each other.”

“Make a conscious effort to choose happiness.”

“How did you lose your leg?”

“I went from the amputee club to the cancer club.”

And humor that perhaps only amputees can appreciate:

“We just taped my skin back on.”

“An amputation extended my expire by date.”

“I always danced with two left feet.”

A T-shirt said “My other leg is on lay-away.”

“People, Purpose, Passion” is a theme that will be carried forward as attendees take this message and their enthusiasm back home to their families, coworkers, support groups and their local communities. This conference is a celebration of life, shared experience and purpose.

Next year’s conference will be held in Washington, DC.

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Patient Stories: Douglas Brown, Sr.

Douglas Brown, Sr. didn’t know he had diabetes until it was almost too late.  After not feeling well and having some foot pain, his good friend and his daughter became alarmed and forced him to go to the emergency room just days into 2018.  Suddenly, instead of looking for New Year’s resolutions, he was wondering how he was going to use the clutch on his tractor without the use of his left leg.

 As he tells it, the gangrene in his left foot came close to killing him very quickly, and if it weren’t for these two women in his life, that is probably what would have happened.  The operating surgeon, Dr. Hazen Elaviny, told him later (after his several hour surgery), that had he waited three more hours for treatment, he would have died… the infection had travelled that far up his leg artery.  As it was, Dr. Elaviny originally had planned to amputate Mr. Brown’s leg at the hip, but instead, he tried a groundbreaking new procedure. He performed a below knee amputation (BKA) on his left lower leg, and left the wound unclosed for several weeks to allow the infection to drain out.

Douglas’s diabetes is controlled by diet today, but the disease he didn’t know he had then could have easily taken his life.  He makes it very clear that “the whole process was very scary.”

 A very active man, Douglas knew that he wanted to get back to his work and hobbies as quickly as he could. As a farmer, he needed to be able to drive his tractor. Since he earned his living as a surveyor, he needed to be able to be on his feet for long periods of time.  But he was also a passionate Civil War re-enactor, and considered that he might have to change his roleplaying to be the soldier who got his leg amputated!  He made a quick recovery his mission.  Before he got his first temporary prosthesis he got on his Ferguson TO-20 and mowed 12 acres!

Receiving his first prosthesis was a process in and of itself and took a little time - a journey that he was eager to embark on. First meeting with his prosthetist, as the sutures in his limb began to heal, he transitioned to wearing a shrinker sock to help reduce swelling and begin shaping his leg for prosthetic use.  He was eventually measured and casted for a prosthesis. Next, he began the fitting process, which allowed him to begin walking in the office and in a controlled environment. He eventually received his first prosthesis, almost a year ago, and quickly excelled beyond physical therapy, and walking in his home. He has progressed tremendously since receiving that first prosthetic leg a year ago and has moved on to his second prosthesis.  Now he is looking forward to incorporating new technology into his prosthetic leg as his lifestyle and activities increase. 

Since then, this Harmony, Maryland resident has marched in parades, continued mowing the 20+ acres at the Eastern Shore Threshing Grounds on his tractor and spending time with other vintage tractor enthusiasts, and plans to resume playing tennis this spring. He is very proud that he returned to surveying only one year after his surgery.  As a rule, he doesn’t use any assistive devices – using the stairs in his two-story home while wearing his prosthetic leg.  When people ask him how he does all those activities and gets around wearing a prosthesis, he says, “You just put it on and go!”

Patient Stories: Diane Clark, Radio Personality!

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Our Western Maryland office in Lavale now has a new radio personality in patient Diane Clark. Diane wrote one of our earliest patient stories (click here to read that story) and was recently joined by clinician Mark Treasure, CP, BOCO for a radio interview on WCBC 107.1, when they “appeared” in an early morning interview with host Dave Norman.

Dankmeyer’s Diane shares her name with the radio station’s meteorologist Diane Clark and they have a chuckle about that to start. During the interview, Dave reveals that he is familiar with Dankmeyer, having come to the office as a young athlete for an orthosis in the early Eighties, which he still has and uses! They discuss the improvements in orthotic and prosthetic fabrication that technology has provided. Diane’s first prosthesis in 1991 was constructed in a very different manner from her current prosthesis. Her prosthesis today is lighter and more durable than her earliest prostheses, of which she has had seven over her 28 years as a Dankmeyer patient. This is a good thing because Diane is very active. She says , “I’m very rough on my leg!”. She had one prosthesis so well fabricated that it made it through a motorcycle accident. Rough indeed!

Diane talks about the emotional process she went through when her leg was amputated as a young mother of two (as a result of a snowy day car accident). She strives to be supportive for other amputees with her positive attitude and active lifestyle.

Originally scheduled to last for three minutes, the three chatted for ten minutes. Diane and Mark certainly sound like naturals. You can listen to the interview by clicking here.

Patient Stories: Dr. Andrew Rubin and Infinite Biomedical Technologies

This is a story told in two parts. There are different players in this story, each with a significant part to tell and both are interesting and engaging and totally intertwined. We want to share as much as possible about these contributors and their relationship to each other - Dr. Andrew Rubin and the team at Infinite Biomedical Technologies.

First up, visit the story about Dr. Andrew Rubin. A patient of Mark Hopkins, CPO, Dr. Rubin is a writer and English professor who has had an amazing, almost unimaginable journey that eventually brought him to the research team at Infinite Biomedical Technologies (IBT). Dr. Rubin, Dankmeyer, and the IBT team have worked together in a collaborative effort to bring about some very positive outcomes in this story. In the second part, read about the technology that IBT created that turns Dr. Rubin into a self-described “refurbished double amputee”. Click here to keep reading…….

Patient Stories: Dr. Andrew Rubin and Infinite Biomedical Technologies (Part I)

Dr. Andrew Rubin at Dankmeyer, with his mother and Luca the Goldendoodle.

Dr. Andrew Rubin’s limb loss story begins long before his first amputation in 2017. Dr. Rubin experienced multi-organ failure in 2003. He was making great strides in recovery when, in 2006, he had an accident which very briefly paralyzed him from the neck down. In his riveting blog, The Refurbished Body, he writes about his initial illness, his vivid memories of the swimming accident and his subsequent recovery from another near death experience. Eventually, the English professor returned to writing and published a book in 2012, followed by several others.

Four years later, the longer lasting effects of the septicemia and the compartment syndrome which had paralyzed and damaged his right leg and hand in 2003 lead to a decision to amputate his lower right leg. Shortly after receiving his prosthesis, Dr. Rubin contributed pictures and video to our website featuring his return to running in the May 2017 Adventist 5K Walk Wheel or Run. If you want to read about that event (and about Luca, his Goldendoodle), you can read that by clicking here.

Not long after this successful transition to lower limb prosthetic use he made the decision to amputate his right hand. Dr. Rubin discusses this journey in a magazine article in Experience, entitled “Becoming bionic”, written by Eric Niiler.

“I began to think of limbs as replaceable parts,” Rubin says. “My hand didn’t work, so I could get a better hand. But the hand is so much more complicated. It’s the most complicated part of the body. It’s almost a work of art.”

Niiler’s interview details Dr. Rubin’s participation in testing a new type of prosthetic hand with the research and development team at Infinite Biomedical Technologies, located in Baltimore, MD. Niiler also authors an article in the technology magazine Wired, about Dr. Rubin and IBT. In “Bionic Limbs ‘Learn’ to Open a Beer”, the recently FDA approved technology is explained. This technology is covered in the second part of our story, courtesy of Megan Hodgson of IBT. Dankmeyer has been collaborating with IBT in their research efforts for several years, and is very excited that several patients are benefiting from the groundbreaking research taking place there.

Take a look at these pictures from Dr. Rubin, followed by a very cool video and then we will take you to part 2!

To continue the story, where Megan from IBT writes about some of the technical aspects of this research, click here!