Building a New Prosthetic: An Adult's Perspective
Kathryn continues to offer perspective as an adult with a limb difference… This time, as a long time prosthetic user. You can read any of her past Living Born Just Right posts. -Jen
I have really enjoyed Jen’s posts about Jordan getting a new helper arm, and it got me thinking about my own experiences over the years. Jordan looks like she is having so much fun! When I was Jordan’s age, my dad drove my sister and I to Detroit so I could get a new prosthesis. My favorite memories of the whole process were playing the “license plate” and other car games (I still say they are more fun than iPads, DVD players, and all the other gadgets we have today), my dad making tons of U-turns, and eating these buttery spaghetti noodles at some restaurant near the hotel.
I have always had mixed feelings about prosthetics. My parents arranged for me to have a prosthesis very early on, before I was even walking, so it has always been a part of who I am. I like the stability they provide, and since my arm is so short, I like that they provide me with a counterpart to my left arm and “fill in” my long sleeved shirts. I love the advancements the manufacturers and designers have made with cosmetic features.
My two biggest frustrations with prosthetics are comfort and speed/functionality. The comfort factor is partly due to my stubbornness in not wanting a traditional harness or strap, and also the weight. Above-the-elbow prosthetics are heavy! I spent years with significant shoulder pain, as if I had been letting a small child sit on my shoulder all day, every day. This, again, is likely the result of not having a traditional strap. When I was child, I always had a strap that went from my back and then diagonally across my chest to help secure the arm. No big deal. But then I became a teenager, and having a strap that circled from my back to my front was just not something I was keen on any longer. If you are a woman, you understand. They’re called boobs. And unlike men, who wear t-shirts, polo shirts, and button downs, we wear V-necks, tank tops, pretty dresses, etc. So over the years, I used as little harnessing as possible, resulting in (self-created) issues with comfort.
As for functionality and speed, my last functional arm was built in 2000, and although it was promoted as being very fast and functional, I became quickly disappointed. I am certain a lot of advancements have been made in the last 13 years so I don’t want to assume I couldn’t get a really amazing functional prosthesis today, but my experience over the last 30+ years is that the technology is not quite there to build an arm that is as fast, or close to as fast, as my left hand. It may be that I have become so used to doing everything one-handed (and quickly) that I simply do not have the patience to wait for anything even remotely slower… since I am not a very patient person, that is a strong possibility! But for me, if I am going to have a helper arm, I want it to really help me.
In 2008, the people I work with at the Orthotic Prosthetic Center- “OPC” (whom I adore, let me say that upfront) told me about a guy who was building cosmetic arms. I was very intrigued by this concept, especially since I was not actually using the prosthesis I had at the time. The new arm would be much lighter and look “just like” my left arm. Sold! Unfortunately, the experience was a disaster, and the person who promised OPC that he could build cosmetic arms turned out to have eyes that were bigger than his stomach. The arm he attempted to build me over the course of 10+ months was not only nothing like what he had promised, but was also structurally deficient, such that there was no way I could wear it for one minute, let alone a whole day.
For those of you reading this who have never worn a prosthetic, imagine paying for a new Mercedes, only it has no seats or engines. That’s what this “prosthesis” was like that I was supposed to get in 2008-2009.
Fortunately, after that OPC connected me with the talented people at Real Life Prosthetics in Abingdon, Maryland. This time, the process only took a matter of months, and the end result is a cosmetic prosthesis that is light, comfortable, and looks amazingly like my left arm. Because it is so light, I don’t have to have any straps whatsoever, which was a big bonus. At some point, I would like to explore getting another functional arm, but for now, I am happy with what I have.
I am curious – to all of you in the BJR family who have prosthetics, what do you have? Functional, cosmetic, or both?
I am 43 and wore a body-powered prosthesis most of my life without really questioning it. It was much more useful when I was growing up than it is now. In fact, I use it so infrequently now that I often misplace it for days. I actually wrote an essay about when I stopped wearing it. Instead of repeating myself, here is a link: http://www.notpasty.com/the-day-i-put-my-prosthesis-in-the-drawer/
Thank you SO much for sharing, Elizabeth.
I’m interested in learning more about above the elbow prosthetics. My 6 month old was born missing most of his left arm (I think it stops mid-bicep, maybe even upper third). Where do I even start?
@Julia – I recommend working with a prosthetist who has experience working on elbow prosthetics. I don’t have the link at this second, so bear with me. I have some details on how to find the right prosthetist from an earlier blog post. I promise to reply to your comment again with the details.
Tasneem Carrim’s story
Nurayn Carrim Ballim
Introducing Nurayn and family
Written by tcarrim, This story is also published in the DysNet community.
Description: Nurayn Carrim Ballim
Nurayn’s story
Nurayn joined our family 2 years and 5 months ago. She was born in Pretoria, South Africa. Her name means light, twin lights to be more precise. And she is definitely full of light.
On the day she was born, we discovered that her right arm was not fully developed. She has no elbow, her humerus and radius are fused, she has two fingers on her right hand and there are some shoulder complications but we are not sure what yet. Her left hand is ‘normal’.
Nurayn has an older brother, Salif, who is 5 years old. My husband and I decided late in our lives to become parents. I also have a chronic condition called rheumatoid arthritis, so the decision to have children was a conscious one and carefully considered. There were a number of risks which were carefully mitigated, with the help of a super gynaecologist/ obstetrician. The only issue we faced with the birth of Salif was that I had a huge flare of the arthritis after the caesarian.
We were doubly cautious in planning the next pregnancy, with advice from my rheumatologist sought prior to even attempting to fall pregnant. I was told that of the drugs I was on, the only one I needed to worry about was a drug called methotrexate. In retrospect, we have wondered whether another drug that I was not weaned off, Azapress, might have had a role in causing the disability.
We have been told that the cause can never really be determined, and we don’t worry too much about pursuing it. One day maybe Nurayn will want to know what the cause was and we probably need to be ready then.
Right now, Nurayn is a bubbly, bossy, independent, talented 2 year old. This picture is Nurayn at her second birthday. She receives Occupational Therapy and physiotherapy once a week. She uses her right arm for almost everything. We are engaging an orthopaedic surgeon and prosthetist to investigate a prosthesis for her, mainly to prevent scoliosis and also to give her better balance. After having researched this element a bit, I came to the conclusion that should Nurayn chose to use a prosthesis later in life, her choice will be easier to implement if she already had the habit of something on her arm from an early age. (I am aware that the rejection rate of arm prosthetics is high). At the same time we don’t want to limit her natural ability, so we envisage a situation where she will wear it half the day and will not wear it the other half. I would welcome any comments or suggestions on this issue.
I would also like to start a conversation about the choice of primary school for Nurayn. What is the advice from parents or adults with limb differences? Would like to hear from others on any advice you can offer. In the meantime, we love reading all the stories on the dysnet newsletter and take bucketloads of inspiration from them.
I really want to know more about prosthetics and the use of them If anyone can chat or advice it will really make a difference
In South Africa we dont have centres where we can get prosthetics The only way to go is private and they really cost alot Therefore getting the correct aid is important
Thank You
Julia – where do you live? I would start by running an internet search for prosthetic centers in your area. Good luck!