Patient Stories: Mr. John Singer

John Singer came to Dankmeyer in an interesting way.  His son’s mother-in-law-to-be, a physical therapist, saw John’s irregular gait one of the first times that they met and asked John if he would like her to make an appointment with Dankmeyer’s Mark Hopkins.  John accepted this offer and it’s been a transformative experience on multiple levels. 

John has bilateral idiopathic denervation in both legs following two spine surgeries and foot surgery.  Essentially, the muscles in both of John’s legs below his knees do not work, leading to an irregular gait, balance issues, and a drop foot on his right foot. 

Working with Mark Hopkins and Sheryl Sachs at Dankmeyer and a neuro-physical therapist at the Physical Medicine and Rehabilitation Department at Johns Hopkins, John was prescribed Allard Blue Rocker Ankle-Foot Orthotics (AFOs) for both legs.  In John’s words, the AFOs are “life changing,” permitting him to walk reasonably normally, travel abroad comfortably, and, perhaps most importantly, walk his son down the aisle at his son’s wedding without assistance.

Though John’s AFOs are made of carbon fiber they are not indestructible.  Due to John’s renewed active lifestyle, he has had three AFOs that broke in less than three years of use.  After his second AFO broke, John learned that while a typical carbon fiber AFO only has an expected life of three years Medicare and most private health insurance programs only will pay for a new AFO after five years from the date of its delivery.  Due to this five-year rule, insurance typically will not pay to replace AFOs that break from normal usage in less than five years.

AFOs, whether new or a replacement, can cost over $1,000 when a patient has no insurance coverage and has to pay for them out-of-pocket.  Even when there is insurance coverage, the patient’s co-pay is often over $200.  After discovering these gaps in insurance coverage for both new and replacement AFOs and the resulting significant costs faced by the patients who need them, John decided to take action.

John’s actions take two forms.  The first is advocacy, encouraged by Dankmeyer’s Sheryl Sachs.  John testified twice in the most recent Maryland state legislative session (both times in shorts in February so his AFOs were visible to the legislators) in support of a successful effort which made Maryland the 44th state to require state-regulated insurers to pay for new AFOs annually if they break or a patient’s medical condition changes (this Maryland law does not effect Medicare and other federally-regulated programs).  Also due to Sheryl Sach’s efforts, John had the privilege to share his AFO story with over 150 orthotics professionals at the American Orthotics and Prosthetics Association’s (AOPA) Annual Policy Forum in Washington, DC and joined AOPA members lobbying on Capitol Hill for better insurance coverage for orthotics.  John describes his time with AOPA as, “two of the most meaningful and humbling days of my life.” (You can learn more about Advocacy on the Dankmeyer website by clicking here.)

Sheryl Sachs and John Singer at the AOPA Policy Forum.

John’s second action, done with his wife, Karen, and in partnership with the Physical Medicine and Rehabilitation Department at Johns Hopkins and the guidance of Mark Hopkins, is philanthropic.  John and Karen made a one-time gift to create an AFO “library” at Johns Hopkins where patients can try out different types of AFOs to find out which AFO is best for them.  John and Karen also created the “Singer AFOs For All Fund” at Johns Hopkins to provide financial assistance to individuals who would benefit from AFOs but could not otherwise afford them.  John and Karen’s goal is to raise $250,000 for the Fund and they are providing seed money in the form of a matching grant for the first $125,000 in donations. 

John’s daughter Amy, son Charlie, and daughter-in-law Kelly joined the family’s fundraising and awareness efforts. John shares a “proud father department” story.  Amy arranged a fundraiser  near where she lives in Washington. DC, with a goal of raising $1,000 to $2,000.  Charlie and Kelly gave Amy a fundraising challenge telling Amy that they would match any money that she raised up to $5000. Amy raised $5300 and they matched $5000 as promised.

You can donate to the Singer AFOs For All Fund by clicking here.

John, his wife Karen and daughter Amy at a Washington, DC fundraiser that Amy organized.

Patient Stories: Emerson Spekis

Part of the joy of our work at Dankmeyer is seeing our patients grow over the years: physically, mentally, and emotionally.

From 2 ½ to now 15 years old, Emerson has been a solid user of his prosthesis (if we could make it, he could figure out how to break it) and developed into a strong advocate and educator in the limb loss awareness and prosthetic device space.

His mom shared with us this article he was interviewed for by Johns Hopkins.

Johns Hopkins Children’s Center Patient Offers Hope to Others with Limb Loss | Johns Hopkins Medicine.

Emerson’s testimony (along with others) to the Maryland Legislature in 2024 was an essential part of the success in the passage of the So EveryBody Can Move legislation in Maryland. Emerson is pictured below with his mom Wendy and others who contributed to this effort.

If you are interested in learning more about advocacy, visit our webpage by clicking here.

Senator Pamela Beidle, John Edward Heath, Emerson Spekis, Steven McDonald, Wendy Spekis, Sheryl Sachs at Dankmeyer.

Patient Stories: Mr. Berry Williams

Dankmeyer recently delivered an innovative shoulder disarticulation prosthesis using 3D printing to Mr. Berry Williams.  A shoulder disarticulation is an amputation where the arm is removed from the shoulder joint, leaving the shoulder blade and collarbone intact. As in many amputations of this type, Mr. Williams’ amputation was a result of severe trauma in a motor vehicle accident.  After his recovery from surgery, he was ready to get a prosthesis to help him resume the activities of daily living as well as complete routine tasks at his workplace.

A traditional design process for this device would include casting, creating a plastic molded socket, shaping and laminating a humeral section from the shoulder joint to the elbow (upper arm), cables and all the other elements required for this type of prosthesis.  The final deliverable prosthesis would have taken much longer to fabricate and be heavier than an alternative solution involving 3D printing and a unique lightweight socket.

His clinician, Mary Reedy, CP, worked closely with our entire fabrication team to engage in some very clever in-house engineering to produce a prosthesis that weighs less, is more breathable than a traditional prosthesis and was fabricated and ready for the patient to take home in less time than traditional fabrication.

Mary started with a traditional casting with plaster and a mold of the patient’s shoulder was made.  How did we get from this to 3D printing? Mary began by modifying and shaping the plaster model to adjust how the socket would interface with the patent’s shoulder and torso.  Fabrication Technician Lukas Baner, CTPO, took over the creation of the test fit model. The mold was scanned and a 3D version of the patient’s anatomy and a test socket was created using specialized software.

Digital models of the shoulder joint were created and used to create 3D printed test components to attach to the shoulder joint and elbow joint of the prosthesis.  This allows the joints to be better aligned in space relative to anatomical alignment and allows us to model and assemble a device virtually in the software – eliminating potential trial and error using physical materials.  Parts to be 3D printed were selected and these test components were printed in house by our Digital Technician, Jay Hall, and assembled with the test socket, shoulder joint, elbow joint and harness for a test fit with Mr. Williams.

Working with his prosthetist Mary, they found other modifications to make, assuring the angles and length of cables to the terminal device Mr. Williams selected were correct. Once this process was complete, the test socket and components were scanned and compared to the previously established alignment. After Mr. Williams completed his test fitting, all necessary changes were completed, and a final socket shape was created. The mounting brackets for the shoulder and elbow were modeled in the appropriate alignment. It was time to fabricate the final product.

Before beginning final fabrication, our fabrication team had an idea that would elevate this design just in time for summer! Jeremy Halteman, CPO, Director of Technical Operations, worked with our CAD (Computer Assisted Design) software to implement a socket design for the prosthesis. Fabrication Technician Shawn Ross envisioned a design to create a lighter, more breathable socket.  This socket design would be cooler and more flexible for everyday living, but particularly for Mr. Williams in his work. 

Shawn’s design modified the socket to have an open weave, lattice-like structure in the selected 3D printed material instead of the heavier solid plastic molded socket.  The nylon components would be very strong, but lightweight and flexible.  The finished design was sent off to be 3D printed using MJF PA12 Nylon material, and was received in about 4 days, ready to assemble with the other parts.

Mr. Williams came in and tried the revised design on and found it to be a good fit.  He was ready to schedule sessions with Occupational Therapy for training using his new prosthesis. Further follow-ups with Mary Reedy will continue to allow for further refinements as Mr. Williams perfects his use of the prosthesis. 

Our entire team is committed to constantly exploring innovative techniques to make improvements in the design and fit of all the prostheses and orthoses we fabricate.  The success of Mr. Williams and of all our clients is our mission.  We appreciate that Mr. Williams has allowed us to tell the story of his prosthesis’ fabrication and share photos of his original test fit design with the traditional socket, and the photo of him wearing the lattice socket he took home. These pictures clearly tell the story of what we call “the Dankmeyer Difference.”

Patient Stories: Anton

Anton B came to us in April of 2024 through a non-profit focused on helping injured Ukrainian soldiers. (War Amputees’ Help Open Organization.) He sustained a left transfemoral amputation as the result of combat trauma. He is young and active and really wanted to get back to being able to work and run and exercise again. We helped facilitate appointments with our partners at Johns Hopkins Orthopedics and Physical Medicine and Rehabilitation where he received surgical and rehabilitation services as part of his overall care. We were asked to provide new prostheses for him following his residual limb revision surgery in preparation for his return home.

 The recommendation was a prosthesis for everyday use and a special use prosthesis designed for running.  His needs presented a complex situation – there were a number of challenges to meet.  Anton does not speak English. We had a limited budget, time, and other resources.  Then we learned that the military was recalling him home by October 10th!  He also wanted to get back to his family – Anton and his wife just had their first child, a baby girl.  We had to work with intention and patience and push through all these things to keep those big goals in mind. 

Anton and Dankmeyer had great team of people supporting this work which includes his US based non-profit sponsor who has done an incredible amount of work supporting his needs. The Dankmeyer administrative and fabrication teams worked diligently and quickly to support the clinical work and meet our deadlines. And, the Johns Hopkins Orthopedic Surgery and PM&R team provided guidance and a nearly perfect residual limb revision surgery and tireless rehabilitation service.  We all worked really hard together and pushed through the issues resulting in a really good outcome.

Before he returned to Ukraine, Anton had a good prosthesis set up, and certainly enough devices and component parts to be walking and learning to run.  Anton has a good arrangement to follow up in one of Ukraine’s new prosthetics/limb loss rehabilitation centers for long term care. Even after 34 years of work as a physical therapist and CPO, I professionally and personally learned a lot from our relationship. Some services can be very frustrating at times, particularly when there are barriers from externalities over which we have little to no control. Coordinating all these resources to meet these challenges and achieve success for Anton and all our clients is one of the most rewarding parts of practicing in this profession.

We wish Anton and his family safety and success in his rehabilitation.  Should he visit us again, we will welcome him with open arms.

 -              Mark Hopkins, Dankmeyer CEO, CPO, PT – and Anton’s prosthetist.

 

Patient Stories: Alan Lyles

“Many thanks for your professional assistance in designing and making my orthotic work.” 

This was Alan Lyles’ response to our August call for entries to win a new Dankmeyer T shirt.  He was specifically referring to his orthotist, Marlies Beerli-Cabell, CPO.  For a bonus entry to the contest, he submitted some pictures of himself wearing his orthosis – both at home, and in Finland.  Yes, that ankle foot orthosis gets around!  We asked Alan to tell us more about his travels.

As it turns out, Professor Lyles (Alan Lyles, ScD, MPH, is the Henry A. Rosenberg Professor of Government, Business, and Nonprofit Partnerships in the College of Public Affairs at the University of Baltimore) was living, travelling and working on a Fulbright Specialist project in Finland last spring, and some of the orthosis pictures were taken in the airport in Vantaa, Finland.  In his lectures as part of this project, he stressed that “managing the health and social services reform … in a sustainable way requires courage and strong will from decision-makers and management.” (Alan Lyles. Finland’s Lesson: Being Happy Takes Work. The National Interest Blog. August 16, 2022. )

(If you have access to LinkedIn, you can read a post in LinkedIn from the institution where Alan spoke. While the post is in Finnish, you can click on the Translate button to get an English translation. Click here.)

Alan Lyles has experienced social reform in a very personal and direct way.  A child of poverty in the rural South, he was surrounded by illiteracy in the majority of his family members and he had poor health – having tuberculosis at a young age.  An aunt took over his care when he was seven, and despite her own limited formal education, she realized that Alan should have what she did not.  Her persistent pushes and in high school his mother’s setting more ambitious goals, lead to his eventual advanced education.  Two years ago, Alan wrote describing his upbringing and the challenges of achieving literacy in the Fayetteville Observer (Fayetteville, NC). Click here to read the article.

Eventually having achieved his Doctor of Science (ScD) and his Master of Public Heath degrees, he is currently a professor at the University of Baltimore – a far cry from his rural South roots of seventy years ago. His social and economic environment as a child formed his views on the need for education, healthcare communication, and to some extent happiness.  He has come to understand that happiness takes work, compromise, trust and what the Finns call sisu – or grit.  Alan writes, “These are the same things that allow us to face the complex issues of our times, whether you are wearing an orthosis, have some limb difference, or face any variety of social or economic challenges.”

We appreciate that Alan chose to share his story with us.