The Deal With Prosthetic Arms

February 11, 2013 — 12 Comments

“Of course the prosthetist has one leg,” I thought to myself.

His name was Ken and he was big and loud and, honestly, kind of scary.  He invited me back and I followed him through the halls of Aljan, the place where I’d received my prosthetics some twenty-five years ago.

Look what I can do!

Look what I can do!

I decided to go there again recently, not to get a new arm, but to do some reconnaissance work.  I’m asked all the time about prosthetics and since I haven’t worn one in over twenty years, I figured it’d be good to bone-up on the subject.

The funny thing is, I drive by Aljan every week.  And nearly every time for the last year I’ve thought to myself, “Dude, just make an appointment and go in.”  I’m glad I finally did because I learned a lot.

For one thing, Ken said that the faster you get a prosthetic on a person, the more likely they’ll stick with it.  We amputees are quite efficient at adapting, apparently.  “If a recent amputee waits even a couple months, chances are they’ve already started adapting and won’t like a prosthetic arm,” Ken said.  Of course, that’s a generalization, but one from a man with a lot of experience.  As far as kids/infants go, he says this is the main reason they want to get one on them so quickly; not so much because it’ll help them, but because it’ll get them used to it.  I asked if having a prosthetic arm on a small child helps with skeletal or muscle formation and he said he really didn’t think it did.  “Most of the research doesn’t indicate that,” he said.  He also said – which I can’t decide if I find surprising – that’s it’s very common for teens to “ditch the arm.”  Teens are at that age where appearance is everything, right?  So, why the decision to ditch that which “makes them look normal?”  Very interesting.

According to Ken, the technology hasn’t improved a whole lot since I was a kid.  In fact, I probably couldn’t use a myoelectric arm now unless I had the plate in my arm removed.

Or I could just use this.

Or I could just use this.

He said the iLimb is out there, but it’s not popular because it’s so much work to maintain and people can’t afford it.  I asked why he thought the technology hasn’t improved and he gave me several answers.  One is because the need for them is less than in the past.  My eyebrows went up at his assertion, but then he explained that safety technology has improved so much that it’s virtually eliminated all of the factory and farming accidents that used to cause so many amputations.  “What about the military?” I asked.  He said that even the military sticks with the basics (for the most part).  “You’ll see some bionic guy on the news every once in a while, but that costs a ton and really isn’t the norm,” he said.

The other disappointing fact here is that health insurance companies pay very little toward prosthetics.  So, since the companies need to turn a profit, what sense does it make to pour money into research and product improvement when your clients can’t afford it and their insurance won’t pay for it?  It doesn’t.  To be honest, if I were to take up a cause, it might be this one.  But, working in the industry for over seven years, I know I’d be banging my head against a wall.  Someday, maybe.  Thankfully there are organizations like the Shriners (and many others) to help.

Lastly, I asked about support groups.  Ken told me there are no support groups in the Madison (WI) area.  None.  I asked why he thought that is and he said limb-differences are more accepted now than ever before.  “We used to be the freaks in the corner.  It’s not like that anymore,” he said.  I tend to agree with him.  Plus, with the advent of the internet, people can find support online in ways they couldn’t have twenty years ago.  That said, there’s something to be said for interacting in real life, like I did at the Helping Hands Foundation‘s event a couple weeks ago.  Those types of groups need to exist everywhere, in my opinion.

At the end of our visit, I shook hands with Ken and when I left, I felt more prepared. I also felt awkward because a guy was staring at me while I was writing notes in my car. That aside, what I learned confirmed my belief that parents of limb-different kids should just do what they think is best.  Getting a prosthetic arm or not getting a prosthetic arm isn’t the end of the world.  Plus, chances are (apparently) your kid might ditch it at some point anyway.  If you want to try it, it sounds like the best idea is to get it on them early and then allow them to tell you how they feel about it as they grow-up.

Whatever you do, and I’ll say this until I’m dead, as long as you’re loving your kid when you make the decision…you’re doing the right thing.  Don’t beat yourself up over it.  Do your best and rest in the fact that you have an awesome kid who loves you no matter what.

Until they’re, like, thirteen.  But, that’s not exclusively a limb thing.

Anyway…there you go.

What are your thoughts on and experiences with prosthetic limbs?


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12 responses to The Deal With Prosthetic Arms

  1. We had our son fitted at 4 months for exactly the reason listed, to get him used to it. He kept wacking himself in the face with it. My husband and I hated it and feared we were doing wrong. When he was 10 months old, he got his first mayo. He pinched himself with it several times and would cry if he even heard it open and close. What are we doing to this kid? Then he got used to it and was a regular wearer until age 3 and a half when he went to preschool. He would dump it in his cubby the moment I left him. He has a passive now that accepts different attachments. He almost never wears it and we don’t make him. We encourage him to use the “lego hand” when he bikes. A couple of years ago at a camp I got into an argument with a prosthetician who told me my son would never be accepted by society unless he wore that prosthesis. I strongly disagreed with the guy. A month ago, my son performed in a musical of Winnie the Pooh without a prosthesis. He sang, he danced and he was accepted. I have never been prouder of that kid… A voice like an angel. I wonder if he will ever want to wear a prosthetic. I want to give him the opportunity but it’s been his choice since age 3. I think that is how it should be.

    • Hi Beth, my name is Evan, I’m 26 and was born without a left hand. I went through almost the same thing as your son. I had it and I just hated it. I got one later for appearances that I still sometimes wear when I wear suits, just because I like the way it looks better. I learned to ride a bicycle without any prosthetic aid. If your son finds it easier to ride with one that’s fine, but if not than that’s fine too. I ride a racing bike now just fine.

      Anyone, the main reason I’m writing this, and I know it’s way late, is to say that what that prosthetician said to you is the most rude and untrue thing I have ever heard. I really hope you see this. I don’t know how old your son is now, I want you to know that I went through high school and college with no problems at all. I was the captain of my volleyball team and played tennis for my school as well. Most of my friends would forget that I was even missing a hand. Same for college, and after that as well. I worked in retail, and at a desk job as well. No one will make a deal out of it if you do not.

      But really I think the reason I’ve been able to do so well is because my parents were always super supportive of me. They never let me use my arm as an excuse, and they always drove me to be my best. It seems like you guys are being very supportive too, and I think that is just fantastic. Please don’t change

      • Thanks for this, Evan. So good. If you haven’t “liked” the Facebook page, I’d love if you joined us there, too: There are tons of great people there who would love your perspective!

  2. Ha. I pulled my prosthesis out the other day to see if I could use it for archery. It fit me about like yours. I got it at age 12 then had it reworked when I was about 25 for riding horses. Now at 51 it is a little snug. I wore a realistic hand prosthesis in high school and just decided in my junior year that I didn’t want to any more. A lot of people didn’t know I was missing a hand so I’m sure it was a shock to see me with 2 hands on Friday and then only 1 on Monday. Love your blog.

  3. One thing not really mentioned that I think is incredibly important is socket fit. If the prosthetic hurts, you are not going to wear it, no matter what it looks like or what it may help you do. Kids grow fast so it’s hard to to keep up. Most prosthetists can count the number of upper extremity patients they have on one hand. Finding someone that knows arms and can make a good socket is hard, especially when health insurance companies further restrict your choice of providers.

  4. My son Michael [age 16, RBE] always wears his arm to school, but never to tennis practice and rarely to friends’ houses. Once he gets to know someone he ditches it. He had a right hand and forearm until he was 5, then there was a frostbite incident in his native country of Kazakhstan. I adopted him when he was 10. He had never had a prosthetic. He likes it but he’s frustrated with it, too. I don’t know if he will ultimately choose to wear one or not. I was glad Children’s Healthcare had a program to help me [a single mom with no insurance] pay for the myoelectric hand. So he has choices. I want him to ultimately do whatever feels right to him.

  5. (Question from a two handed guy who knows nothing on the subject)

    How easy was it for you to play the NES? Is something like an X-box controller adaptable at all, or PC games?

    • As far as I know, there are no adapters for video game controls. Since I haven’t had two thumbs for over twenty years now, I’ve never played…and I’ve only watched a few times. Owning a smart phone would probably frustrate the dickens out of me as well…We learn to tackle things single handed, as though we had “one hand tied behind our backs”). I can do just about anything I used to do, but it all takes much more time. I suppose video games are also “do-able” but responding with just one thumb would slow things down so much, I’d never get to finish level one.

    • I realize that this is a little late for a reply, but I just stumbled across this website and I know a little something about video games. I was born without a left arm just under the elbow and I have never taken up a liking for a prosthetic. I have found no difficulty playing video games. I guess it’s one of those adapting things, but I’ve been playing them my whole life. I have had no struggles with it ( except for maybe the occasional frustration L1 button) but it has never stopped me. Honestly, video games have probably been one of the most reassuring activities to tell me that I can still do anything a two handed person could.

  6. (came upon this website on interest and love)

    Hi guys,

    As a fellow able person born with one hand and soon to be prosthetist I loved reading your above responses. And I not use prosthetic hand either. Because many of us learn to adapt to do pretty much everything one handed without limitations. I too had a prosthesis for cosmetic reasons when I was a young girl. I gave up on it because since I can do some movement with my hand it only hindered me more but in high school I did find making a brace so I could lift weights in gym helpful. For us (who have pretty much adapted just fine with what we have) I find that using a prosthesis or orthotsis that is directed for a single task(s) is best. Just as rowing or driving. And yes that above prosthetist was completely wrong. Society will accept us because we accept ourselves, don’t let others dictate your life. My family also treated me the same as anyone else, and expected that I was able to do the same as well, but emotional support from friends and family is huge. Also please remember to tell your kids that it is okay to ask for help and acknowledge their feelings\frustrations. If I can answer any questions regarding prosthetics please ask. Otherwise, I’ll keep following your guys posts

  7. I’m glad I found this web site. At 34 years of age, I lost my left arm in a work accident. Six months later i was fitted with a myoelectric prosthetic. The “machine” has impressed many people over the years (mostly children) but I prefer to leave it in the closet. I’ll wear it riding my bicycle, or to church, or other formal occasions, or driving on long trips, but the thing has never worked right and it’s always been uncomfortable. My “honey-do” list stays long, because each assignment will take the best part of any Saturday. Even so, I’ve learned to be content, except for a few things, such as…

    Buying gloves…they always come in pairs.
    Finding an exercise routine that maintains muscle tone on my left side.
    Never being able to ride a Harley (they don’t come with automatic transmissions).
    Tying shoes…I can never get them tight enough…I might as well wear house slippers.

    I found out what my prosthetist received for my equipment, and if I could do it all over again, I think I’d just ask the insurance company for a Corvette, and we’d call it even.

  8. Hi all. I know this is a little late, but I really wanted to say thanks for the perspective this article and the comments have given me. A lot of my reading has only provided a medical view on prosthetics, that skips the emotional and experiential. My story is I don’t have any prosthetic limbs, but I’m a dentist. One day a local Sudanese girl came in for a root canal. Only after the treatment was pretty much done did I notice she had no left hand. I’ve since ben volunteering at a literacy group, and come across more and more little kids with missing hands and arms. All are Sudanese. We run programs and games for them, and sometimes people bring up the issue of prosthetics, and things get heated. “Why won’t they make the effort to get their kids normal looking hands?” That’s one thing I’ve heard. Not knowing anyone outside these kids who has lived and grown with a missing limb, I wasn’t sure how to approach it. The key idea that emotional support matters more than getting a prosthetic limb or not is very encouraging to me, and I hope I can pass that on to the Sudanese kids. Thanks again 🙂

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