Walking up to the hotel entrance on a hot day in July, best clothes on, Hero Arm flashy, still couldn’t beat back the feelings that were mounting up. It was almost like first date anxiety. In a good way. That feeling of meeting someone new for the first time, managing your expectations, trying your best to just be yourself and letting your authentic self shine through. This circumstance was not a one-on-one first date, however. This was Lucky Fin Project Weekend 2023, a yearly event where people with disabilities gather to make friends, network, build community, and bond over similar or different experiences in life. Attendance in the 900-range. No pressure, right? Read on for a first-timer’s thoughts and feelings on this monumental gathering.
I was born without my right arm. I grew up in a time where social media was non-existent, and the world was a much less-connected place. Looking back, those times were some of the most isolating for me. Especially as someone with a limb difference. In my early adolescence and teen years, I felt alone. Others like me were only ‘real’ in the occasional book or magazine. My only interactions with fellow amputees came once or twice a year in a controlled, sterile hospital setting where authentic interactions did not occur. Sure, they may have looked like me, but our interactions were brief and only centered on the medical side of our disabilities rather than on things kids normally discuss, like favorite music, shows, games, sports, etc.
Enter adulthood, and my world has indeed gotten smaller and more connected with the advancement of social media. I’ve connected with more and more limb different friends in authentic ways that don’t necessarily center on just our disability. When the opportunity to attend my very first Lucky Fin Weekend came about, I didn’t even have to consider it for a moment, it was an immediate yes. Put on yearly in Troy, Michigan, Lucky Fin Weekend brings people with disabilities from far and near together for a weekend of community building, networking, and fun.
“This was new as well. Not having to be approached by a stranger who’s immediate conversation starter was my limb difference.”
Walking through the event doors at the hotel was nerve racking. I had connected with a small number of amputees since my teen years, but nowhere near the amount I was about to experience. Seeing children and grown ups with their limb different ‘lucky fins’ wandering and mingling everywhere I looked was a sight to behold. And they weren’t even really talking about their limb differences. Rather they were comparing where they were from, their interests, their passions. The authentic conversations and connections I had yearned for. I knew I had found a safe space and a community, at last.
Night one was filled with meeting new people. Connecting with people my age was like a breath of fresh air, immediately being accepted as not different or someone to pity or feel sorry for, but simply as Lucas; me. No special strings attached or tiptoeing around my obviously physical disability. The only attention brought to my limb difference from those my age was if I invited conversation about it first, or if they mentioned how cool my bionic Hero Arm was. This was new as well. Not having to be approached by a stranger who’s immediate conversation starter was my limb difference.
The children on the other hand (no pun intended), were different. They saw my ‘little arm’ or Hero Arm and immediately went in to touch it or draw attention to it. This was the critical realization moment for me. These kids had what I yearned for at their age. Someone I could see in real life and interact with who was just like them, that I wasn’t the only one. Realizing that these kids had the community I needed brought me close to tears. Lucky Fin Project had brought these kids closer together at a critical moment in their lives, when they needed to know the most that they aren’t alone in their disability, that it’s something to embrace and be proud of.
Day 2 of Lucky Fin brought us all together in a park for picnic food, games, vendors, and informational tables about limb different organizations and prosthetics. Showing off and talking about a bionic prosthesis and a company that has given so much to me, Open Bionics, made the day something to truly be proud of. I had a smile wide across my face for hours as kids played with and marveled in awe at what the Hero arm could do and how it looked. Advocating for a game-changing prosthesis as well as something that is a positive factor in mental health via the personalized covers was thrilling. The level of interest in our Hero Arms solidified the growing interest in 3D printed technology, and interest in adopting prosthetics in general.
That evening, my newly made friends and I were able to swap stories and questions about our prosthetics in a way that was new to me. I was able to talk candidly about my prosthesis from a perspective of knowing that someone could empathize. Friends around me already knew about various prostheses solutions because they had used or were using the same or similar technology as I was. I could share info about my bionic experience, swap jargon, laugh about instances of our batteries going dead while attached to grocery carts. These were refreshingly new conversations to me from other adults and it felt validated to be empathized with. Not to mention, it was totally awesome to see all the different types of bionic arms and why others chose them.
By the time the final day was upon me, I was already bracing for a very hard goodbye. No other time had I felt like I had connected with such lasting friends so fast. If I felt that way, I knew for certain that the children around me would too, and that their friendships found among this community would thrive for a lifetime. No other feeling during the weekend made me happier; knowing that the Lucky Fin Project is the community that will last a lifetime for all those who come. If ever there was a time in my life where knowing that my own sense of community and friendship is validated and that I’m not alone, it’s now. 7-year-old Lucas would be so happy to know this would come to exist for him. Watching newfound friends hug and exchange emotional goodbyes brought warmth to my heart, and a resounding sense of impatience to connect again in person next year.
To find out more about the Lucky Fin Project, including upcoming events, check out their website or Facebook page. If you saw me in action with my Hero Arm and would like more information or to demo it, get in touch here and we’ll direct you to your nearest Open Bionics clinic.
July is Disability Pride Month, and that means it’s a time to shine a positive and important light on the lives of those who live with disabilities, visible and invisible. As a society, it’s our responsibility to give disabled people not only advocacy, but a voice and platform that allows them to tell the world that they exist, their rights matter, and they are not to be feared or discriminated against. All too often, members of the disability community face uphill battles, inequities, and barriers in their lives, and we must continue the work that leads to a more accessible and accepting space.
Open Bionics is proud to amplify voices of the disabled community. One such young voice is Elisa Ferreira, who just recently received her first prosthesis, the Hero Arm. Elisa is 8 years old and from Georgia. Open Bionics’ own Lucas Slusher spoke with Elisa and her mother Nathalie about their experience and journey with limb difference.
Q (Lucas): Elisa it is so wonderful to finally speak to you, we are very excited to get to know more about you. Can you share with us your hobbies and what you like to do in your free time?
A (Elisa): I really like drawing pictures at school, dancing, playing outside and on my tablet. I’ve been in Girl Scouts for 3 years, since kindergarten, and this is my 2nd year as a Brownie.
Q (Lucas): What are your favorite things about being in Girl Scouts?
A (Elisa): I love going camping with the other girls and roasting marshmallows to make s’mores and making projects. My latest project was a drawer!
Q (Lucas): That sounds like so much fun! Let’s talk a bit about your limb difference. Were you born without your arm? How have interactions been while you’ve been in school and Girl Scouts? Do you get a lot of questions?
A (Elisa): I was born this way, and I do get questions about it but I answer that I was just born this way and people are okay with that. Sometimes I get a lot of questions and I just want them to stop but people are nice!
Q (Lucas): I’m glad people are nice! Have you ever used a prosthesis before or is the Hero Arm the first you’ve used?
A (Elisa): No, the Hero Arm is my very first prosthesis!
A (Nathalie): We found Open Bionics through Instagram and signed up interest and then made an appointment to go to Denver to meet with Elise, the Open Bionics prosthetist there.
Q (Lucas): How was the clinic and fitting experience in Denver with Elise?
A (Nathalie): The process was so smooth, so fast. In a good way. Elise was easy to work with and made the experience easy for both of us. She was able to answer all our questions.
Q (Lucas): What has been your favorite thing about your Hero Arm so far?
A (Elisa): Everything! I love the covers, especially my pink one!
Q (Lucas): What are you using your Hero Arm for or what are you most excited to begin using it for?
A (Nathalie): Elisa is really just waiting for school to start again so she can show off the Hero Arm in school and use it for different things there that would make things easier for her! I think she’s especially excited to draw with it at school, since she likes to draw!
Q (Lucas): How was the Hero Arm funded for you? Did you have a positive experience?
A (Nathalie): Yes we got the Hero Arm approved and covered with our insurance, which is Blue Cross Blue Shield. It was an easy process and they were very communicative through it all.
Lucas: That is so encouraging to hear, as sometimes those seeking assistance through insurance can have a rather challenging time. We are pleased to know the process was a positive one for you and especially Elisa so that she could get her Hero Arm! We at Open Bionics look forward to seeing what you do next with your Hero Arm!
Elisa and Nathalie: Thank you!
If you or someone you care about is interested in learning more about the Hero Arm, please head over to the Open Bionics website to register: https://openbionics.com/get-a-hero-arm/. Through amplifying positive experiences like Elisa’s, we will all meet the goal of making not only July, but every month of the year a prideful one for the disabled community. If you have a Hero Arm story that you’re interested in sharing with us, please reach out at [email protected].
There was a recent study published in August of 2022 titled “Patient engagement in cosmetic designing of prostheses: current practice and potential outcome benefits” that sought to determine the importance of customization and design options with regards to the feeling of empowerment in that patient and overall satisfaction rate with their prosthesis.
This study wanted to answer 2 questions:
Of all the surveyed participants, this study found that a majority of prosthetists (80%) typically offer patients at least 1 design option (most prostheses can only be customized once). This number was confirmed by the user survey that stated 75% of the users were presented with at least one design option. Of the users that had the capability to customize their prosthesis, 70% noticed a more positive attitude, improved motivation, compliance, and even function.
Outside of the prosthetic world, there have been many studies conducted on the importance of autonomy. When people are presented with options and choice relative to tasks it has been shown to improve self-efficacy, positive affect, and motivation. By fostering an individual’s ability to make a choice with regards to prosthetic design, it resulted in not only more empowerment from their prosthesis, but also increased wear time and motivation to wear the device.
The study mentioned that prosthetists who do not offer cosmetic options to patients say that it is due to costs. And while you cannot bill insurance for a majority of customization options within a prosthesis, the actual fabrication and material costs of doing so are absurdly minimal. Especially relative to the benefit it provides to the user. So, if you are one of the 20-25% of prosthetists that do not offer custom options, do better.
I had the honor of talking to a long time Hero Arm user, and brand new employee of Open Bionics, Lucas Slusher, regarding his experience with the ability for customization of his prosthesis. Here is what he had to say about the importance of customization:
“Let’s start with the obvious, limb different children and adults face immense pressure to make friends and fit in. Others may see their limb difference in negative ways or be apprehensive about approaching them or accepting them into their social group because they’re ‘different.’
Expressionless prosthetic devices do not help this. They look odd, like they’re trying to be something they aren’t. Uncanny valley vibes may set in, creating another barrier those with limb difference must face. Of course, this leads to negative self-esteem and self-doubt.
The mental well-being of any limb different person, especially children, should be considered during a prosthetic fitting journey. Expression is just as important as function. A prosthesis can be the most functional, but if it lacks expression, it sits in a drawer or under a bed, collecting dust.
Cosmetic designs and expression-centered prosthetics offer a chance for the device to become an extension of personality and a way to show off their interests. Something to be proud of, something that invites discussion and curiosity. These positive aspects not only make those using them more comfortable about their body image, but proud and eager to use the device.
This was also the case for me. I wanted to shed that feeling of conformity that came with a realistic prosthetic limb, because I did find myself hiding it, feeling ashamed of it, or just did not use it.”
I think true user experience and feedback speaks volumes in comparison to not only my professional opinion, but many research articles (or lack thereof) that do not involve user experiences and feedback.
On the topic of patient involvement with regards to prosthetic care. There was recently a Clinical Practice Guideline (CPG) study published in December of 2021 that wanted to establish a consensus on clinical standards of care with regards to unilateral transradial amputees. While I do agree with a majority of these standards as an upper limb specialist, and they did mention that it is important to include the patient in the care, there was one statement, a very important one, that really rubbed me the wrong way. This is it:
“There are a number of limitations associated with this effort. Although some have advocated for the participation of end-users in the development of CPGs, it is unclear whether their input adds validity to the study.27, 28 In this effort, our concern was that the biases a limited number of end-users may associate with their personal prosthetic design and components, and their likely lack of awareness and experience with the range of prosthetic alternatives, might serve to undermine the level of detail sought out in these guidelines.”
Essentially, they did not find it necessary to involve patient opinions, experiences, or studies of the importance of autonomy in humans while developing clinical standards of care for patients. They did not want actual patient experience to “undermine” what they feel is best for patients. Based on the first research article discussed, and the many publications surrounding the importance of autonomy in decision making, and the positive impacts it has on people. I think the most important aspect in deciding what is best for a patient can only be determined by the patient. As a prosthetist, it is my job to have detailed discussions with patients, understand their goals and motivations, then present all viable options to them (pros and cons of each) and involve them in the final decision. I don’t get to decide what is best for the user, but I do get to provide them with options and manage their expectations around the prosthesis they decide is best for them.
We are back again with Open Bionics’ month-long appreciation campaign for Shriners Children’s, where special recognition is given to the meaningful efforts and devotion to children by every Shriners team member to change lives. We’ve spent time learning about the history of the Shriners fraternity from humble beginnings, dived into all things Lexington, met Aubrey, took a trip to Twin Cities, now it’s time to take another unique look at a Hero Arm power user from the Twin Cities clinic to find out about their experience, care received, and how they’re thriving with their Hero Arm.
Sarah Garbe, 14 years old, from Iowa, was born without her left arm below the elbow, which is what’s known as congenital amputation. In her spare time, Sarah has multiple passions including listening to music, playing instruments, watching television shows with her mom like Breaking Bad, and has about 4 years of soccer experience. Through doing what every other teen does at her age, Sarah is a reminder that disability is not a measure of ability and that living an adaptive life only drives her further.
Despite being born missing her left arm, Sarah’s mom Susan explained that her journey with Shriners Children’s didn’t get underway until she was about 3 years old. When they did learn about Shriners, Susan explained that they were told Sarah would be a great candidate for referral to the Twin Cities facility. From there, Sarah came to know and expect quality care from the entire team.
“I’ve had a great experience with Shriners Twin Cities, everyone is super nice and there’s not a negative thing they’ve done.” Sarah shared. Furthermore, Sarah also explained that she came to find out about Camp Un-Limb-ited at the Shriners Salt Lake City facility, a summer and winter camp that brings teen amputees together for a week of activities and bonding opportunities. Sarah attended summer camp in 2022 and looks forward to going to winter camp as well.
Sarah started using a prosthesis when she was in kindergarten but shared that it wasn’t the best experience for her, having been a body powered prosthesis that uses a harness worn over the shoulder to open and close a hook or pincher. “I really didn’t like it, it would rub on my shoulder causing discomfort.” Sarah explained. In addition, Sarah was fitted with a stationary prosthesis that offers no real mobility that she used to rest on the handlebar of a bike to learn balance to ride it successfully.
Over time, Sarah learned about Open Bionics through social media. After doing her research, she told her parents about Open Bionics and the Hero Arm, a 3D printed myoelectric prosthesis with 6 grips and interchangeable custom covers. The design and how the hand moved excited Sarah, who had never seen a prosthesis move like the Hero Arm before.
“I told my mom and dad: hey this is cool, you should get it for me.” Sarah said. “We ended up seeing Becky with Shriners Twin City to get measurements and find where the sensors would go on my arm.” Sarah. To gain full control of the Hero Arm, Sarah was also given the opportunity to utilize the Hero Arm trial kit as well as go through occupational therapy with the Shriners Twin Cities clinicians, where her control of the Hero Arm function and grips were tested and improved upon.
“My favorite part about using my Hero Arm is using it for video games, we have a VR headset and I can use the pinch grip to push the triggers on the controller.” Susan reflected on the care that Shriners Twin Cities provided for Sarah. “They were amazing.’ she said. “Even when we were traveling there during Covid, we got discounts for hotels if we needed to stay for a long time.” Sarah added.
Sarah will continue to receive care through Shriners until she turns 21, where the team of clinicians will be ready to assist her Hero Arm journey as she grows. Open Bionics is extremely appreciative of Shriners Children’s Twin Cities for giving Sarah and her family continued support as well as the opportunity to use the Hero Arm to live an adaptive life. To learn more about Shriners Children’s Twin Cities, visit www.shrinerschildrens.org/en/locations/twin-cities. To register interest in a Hero Arm, head over to www.openbionics.com/get-a-hero-arm/ to learn more.
32-year-old Georgia native Justin Pirkle is a thrill seeker. From shark diving to paddle boarding, and fishing to running competitive races, Justin gets his dopamine fix from adventures that not all would be comfortable doing. These are activities that require a high level of endurance and stamina, as well as a healthy body. Something that may come as a surprise to some after reading about what Justin does for fun is that he is limb different. Did that catch you off guard? Read on to learn how Justin is defying the odds and racing towards letting the world know that a limb difference doesn’t hold him back from participating in the things he enjoys.
Justin is what’s known as a congenital amputee, meaning he was born missing a limb. Specifically, Justin is missing his right arm just below his elbow. Upon seeing Justin swim openly with bull sharks, something Justin has no shame in admitting is an amazing feeling, one may deduce that Justin was involved in a shark attack. However, Justin has shared that he is just a normal guy with a rare condition, one that hasn’t stopped him from his adventures.
“My grandma was not happy when she found out I swam with sharks while also missing my arm,” he said. “She would say: do you want to lose your other one?!” Justin said in a joking manner. Importantly, it’s conversations like this that remind Justin that nothing should hold someone back from the things they enjoy or want to try. It wasn’t always this way for Justin, though.
Justin shared that from a young age, his limb difference was the cause of low confidence in his abilities and body image, causing him to be an introverted boy who always wore a long sleeve to hide his physical imperfection. All too often, this is the routine feeling and state of mind for young amputees.
“I’d wear a long sleeve basically all year long, even in the summer because I didn’t want people to stare at me.” Justin shared. It wasn’t until a girlfriend at the time challenged Justin to wear short sleeves at a mall did Justin break free of his self-consciousness. “It was a big dose of exposure therapy that I needed, because I realized that nobody was really paying much attention to me anyway.” Justin explained.
Justin found some additional relief in the use of prosthetic devices, though the ones he used offered him limited mobility and use to make two-handed tasks adaptive. Through a hook device, Justin was able to pinch grip objects, though there is extremely limited mobility that comes with a device with only one grip option.
Justin was then introduced to a passive prosthesis option, one that at least allowed him to swim while wearing it. The arm, which was skin toned, offered no practical use and had no actual ability to move or operate. The socket Justin wore with this arm had no padding or ventilation, so Justin was constantly dealing with sores and rashes. Over time, the arm became extremely beat up and required tape and fabric to be held together, while the fingers developed breaks and holes at the tips.
Justin turned to competitive and leisure running to stay active and fit. He shared that running has become a way for him to just detach and forget about the things we find stress-inducing in life. “Fitness, running in particular, has become my passion,” Justin said. “It’s something I started doing to manage my day-to-day stress.” he said. Having run several races including the Sweet Treat 5K, Glow for Greta, the Book Mobile 5K, Dirty Spokes 4x4x48, just to name some, Justin has a hobby to truly be proud of, sharing he’s never finished outside of the top 20 save 1 or 2. “My average 5K time is 22:40, and I have a bunch of first place medals for my age group.” Justin said.
Something Justin noticed while furthering his running passion was how sometimes he felt off balance due to his limb difference. Encouraged to find a new device, Justin began the search for a new prosthesis better suited for him. Enter the help of social media, where Justin followed several limb different influencers. One influencer that Justin followed was Paul de Gelder, who lost two limbs in a shark attack. Upon seeing a bionic prosthesis on Paul’s Instagram account, Justin was motivated to search for his own bionic prosthesis. “I typed bionic arm into Google and the first thing I saw was Open Bionics.” Justin explained. Upon seeing the Open Bionics Hero Arm, Justin knew he had found the prosthesis for him, calling it a no-brainer. “That’s it, that’s the one I want.” he said.
Justin signed up his interest in the Hero Arm and checked his email one day. “I randomly happened to check my email, which I don’t do often,” Justin explained. “When I saw I had a response from Open Bionics I was so excited.” he said. From there, Justin traveled to the Open Bionics clinic in Denver, Colorado to begin his fitting process for the Hero Arm with Elise Griset, certified prosthetist.
Since receiving his Hero Arm and brand new ‘Sentinel’ covers, Justin has found new gratification in prosthetics and his limb difference, saying that the light-weight Hero Arm has helped him stay balanced while running, even getting many compliments during competitions. “It’s got a real tech-y look, and it has helped me do a lot of things that others may take for granted like just opening a bottle of water.” Justin said. Before his Hero Arm, Justin shared he’s had to place water bottles into his armpit to open, often spilling the water in the process. The Hero Arm has changed that for him. “It’s a big deal when you haven’t been able to do it,” he explained. “Open Bionics was a no-brainer.” Justin concluded.
Having shed his introverted attitude toward his limb difference and finding the perfect prosthesis to make his life more adaptive, it’s safe to say that Justin will be zooming over the finish line and diving with sharks for many years to come, and Open Bionics will be right there cheering him on. Interested in a Hero Arm? Register your interest today by going to https://openbionics.com/get-a-hero-arm/.
It’s that special time of the month again as Open Bionics continues through June with special recognition paid to Shriners Children’s. It has been a unique journey so far as we’ve learned about humble fraternity beginnings, everything the amazing Lexington facility has to offer patients, and we’ve taken a good look at a special Hero Arm power user from the Lexington clinic. Shriners Children’s truly has a part to play in the lives of their patients that cannot ever be undervalued. This week, we take a deep dive into another Shriners clinic that is working to make a difference; Shriners Children’s Twin Cities.
First opened in March 1923, the original 60-bed hospital became the third location in the healthcare system. Eleven acres of land on East River Parkway along the Mississippi River, as close as possible to the boundaries of St. Paul and Minneapolis, was purchased for $20,000. The first patient treated was a boy named John P. Sharp from Browning, Montana. Fast forward a few decades, in 1956, an addition to the facility was built to house a new outpatient department, an auditorium, and a room for the Women’s Auxiliary. In 1976, the first patient at Shriners Children’s Twin Cities was fitted with a myoelectric prosthesis, which uses muscle control and is the same technology used in Hero Arm.
Shriners Children’s Twin Cities is no stranger to strategic partnerships as well. Since the beginnings in the 1920s, Twin Cities and Gillette Children’s Specialty Healthcare have maintained a relationship with a shared mission to provide high-quality care to children with orthopedic and neuromuscular conditions, and to this day continue to work together to ensure their patients receive the high-quality specialized care that they deserve.
Further expansions took place to Twin Cities in 1990, and the second hospital building was built on the same land on East River Parkway and opened in April of that year. The addition included a 40-bed hospital with a parent accommodation center, two surgical suites, an in-house orthotics and prosthetics lab, and a rehabilitation services suite complete with a therapeutic pool. Twin Cities takes special pride in the progression of advanced medical care over the decades, with the average length of stay for a patient being 65 days in 1970. 35 days in 1980, 8.9 days in 1988, and ultimately down to 2.5 days in 2015.
In 2018, Shriners Children’s Twin Cities made the transition from a hospital to an outpatient clinic, performing surgeries at neighboring hospitals. In June of 2020, Shriners Children’s Twin Cities moved from their original home on East River Parkway to a new clinic in Woodbury, Minnesota, an eastern suburb of the Twin Cities. Today, in their Woodbury facility, Shriners Twin Cities provides pediatric orthopedic care; conditions that are bone, joint or muscle related, clinic care, orthotics & prosthetics services, physical & occupational therapy, X-ray, social work, child life care, rheumatology care, and specialized plastic surgery. In addition, Twin Cities orthopedics department is consistently recognized as a leader in pediatric orthopedic care, making their location a top choice for patients.
Another unique partnership opportunity came about in the fall of 2020, when Twin Cities joined with Blank Children’s Hospital to create Blank Children’s Orthopedics. The idea stemmed from a need to expand orthopedic care at Blank Children’s Hospital, and the new facility is now staffed by two Shriners Twin Cities physicians to continue the mission of both their quality patient care and Blank Children’s.
Open Bionics is extremely grateful for the service provided to every patient by the Shriners Twin Cities care team. Their commitment to improving the lives of children can never be understated. Shriners Twin Cities has, in addition, provided top notch care to those who’ve been fitted with Hero Arms, and we can’t wait to shine a spotlight soon on a Shriners Twin Cities Hero Arm user. Stay tuned! To learn more about Shriners Children’s Twin Cities, please visit https://www.shrinerschildrens.org/en/locations/twin-cities. To learn more about Open Bionics and the Hero Arm, visit www.openbionics.com.