Monday, April 21, 2014

The AIT (Amputee in Training) Experience

We are entering our second week in Florida as part of our dual purpose trip:  Family vacation, and expedited custom leg fitting.   It has been an odd balancing act for sure.  

In regard to my prosthetic fitting, I knew that I would be in for a frustrating six months to one year, as all of the amputees I have talked with warned me that it would be an adjustment with fits and starts, peppered with a whole lot of adjustment and increasing doses of patience.   I'm not quite sure why I've got this tendency to always believe that through my sheer force of will I will be the exception to those expectations.   I can work my butt off, find the right resources, or gut through the difficult transitions more quickly and somehow be spared the ugly realities of the amputee experience.   

Don't get me wrong, for the most part my leg / ankle is pain-free. I have no problems with phantom pain, which can be bothersome and disabling.   I have every reason to believe that eventually I will be back to enjoying the active life I love.   However honestly, all sugar-coating aside.....the experience has been tough at times.

 It is Amputee Awareness Month, so I figured why not air some of the dirt that we as amputees experience.    Here goes: 
  • Insurance hassles.   It's pretty obvious that folks need working limbs, right?   Well, unfortunately prosthetic coverage is one of the areas which falls through the cracks in terms of medical coverage.    The Amputee Coalition of America has initiated the Prosthetic Parity Bill, which aims to require fair health insurance access for amputees and provide a standard of care for prosthetic coverage.  It would be way cool to sign the petition asking senators and government reps to support this legislation.  Click HERE to support this effort, and if you do sign it, I'm sending a cyber-hug from the bottom of my heart on behalf amputees everywhere. This issue is huge.)  If you're interested in more advocacy, here's another petition:   Insurance Fairness Act for Amputees.
  • Socket-fitting issues.   Probably one of the most challenging issues for a new amputee, if not THE biggest frustration.  I've learned that there is both an art and a science to prosthetic design, and it is critical to have a prosthetic provider which embodies the best practice possible in that regard.  The "right touch" combined with dedication and passion are critical in the relationship between patient and prosthetist, and folks are known to travel wherever necessary for that combination of attributes.   
  • Shrinkage.  (No Seinfeld references here!) Within the first year all amputees undergo volume changes to their residual limb, which makes the fitting process a challenge (as well as continued documentation to insurance companies for those changes....see above.)
  • Skin issues.   Like today.  I've got itchy red bumps on the back of my knee, likely due to a combination of having shaven earlier in the week and sweating under my liner.   They suck.  And its best to air out the leg to avoid aggravating the problem for a day or two, lest we complicate the problem.  Usually we hope to figure out the source of the problem (like shaving probably, in my case) and hope that this is part of the "leg adjustment" phase.
  • Hairy Legs, baby!   Yup.... even in best-case scenarios, the little hair follicles scream "help me....I'm suffocating" under the silicone prosthetic liner.   So obviously, taking a razor to emerging hairs becomes even more problematic.   At some point I may attempt laser hair removal, but for now I get to be part Sasquatsch., hey?
  • Sweat happens....and under the prosthetic liner, sweat becomes trapped.  Now consider that I am a 45 year old woman who is on the brink of get the idea.   After doing eight miles on the stationary bike a few weeks ago, I was able to gross out my entire family by pouring what appeared to be at least a tablespoon of sweat from my liner.  There are some solutions to consider (prescription deodorant, botox, and a specialized absorbent prosthetic sock), but for now I'm trying to see if my limb will just get used to it.
  • The need to carry a stash of supplies (allen-wrench for the necessary emergency foot adjustments, extra prosthetic socks, prosthetic ointment and alcohol wipes, rag and other sundries)  at all times.  Ah....and don't forget the crutches for "bad leg days."  
  • A subtle, creeping guilt complex about all that I'm not able to do, the excess crabbiness which comes from pent up ongoing frustration AND the inability to parent my kids in a more active fashion.  We're coming up on 2 1/2 years of  "wait and see", so this feeling is not unfamiliar.   I just want to feel like a fun, not-so-crabby mom again.  I would imagine that these are common feelings among parents who are caught in a similar situation.
Luckily, this AIT experience is not without its positive aspects!  Truthfully, it has been said over and over again that becoming an "amp" is like becoming part of a family.  Folks with limb loss obviously "get" one another, and share the experience on a deep level.  They can also offer support, guidance, practical tips, and understanding.....often with a twist of good natured humor.  (the only problem with the amputee family is that it is'll cost an arm and a leg to get in.)  

Ali, Rebecca and I had a great time entertaining folks at Jimmy Johns,
obviously blending in with the crowd.  We drew no attention whatsoever!  ;)
It was awesome to connect with these gals to share laughs as well as
helpful advice.  While Ali and Rebecca are both AK (above-knee) amputees,
I learned a lot tips from them as the "new amp on the block."

I met Rebecca through a mutual friend in the blogosphere over a year
ago, and was totally surprised to meet her at Prosthetic and Orthotic Associates
in Orlando.  A very cool chance meeting!   Rebecca lives in Philadelphia
and blogs at:: A Thousand Miles .  Check it out...she's got an amazing story!
 The experience of peer-support and sharing is really important.   I found that it was incredibly uplifting to be able to share experiences, questions, challenges, and well as our stories.  I am continually amazed by the people I meet with the most amazing stories.  (I plan to do another post on this stay tuned!)  

All of the folks at Prosthetic and Orthotic Associates have a passion for their work, as well as helping amputees regain an active lifestyle.   Folks from all over the world come to POA because of their custom fabrication and incredible team approach to solving prosthetic challenges, which many of us face.   The family-like atmosphere and team approach works really well, because "many eyes" looking at a prosthetic fitting issue are better than only one set.   What is also very cool is that a lot of folks working at POA are amputees themselves, which have an intimate understanding of the experience. .

I first learned about POA from Ronnie Dickson (pictured here working on my leg.)
Ronnie is an amazing climber, prosthetist, and above-knee amputee who shares
a passion for adaptive climbing.   He's also an awesome, caring guy with a very cool dog.
You can learn more about Ronnie here:  Ronnie is
also heading up the National Paraclimbing Competition coming up in July in Atlanta, GA,
which sounds very exciting.
Part of my rehab includes gait training on the Alter-G...
an anti-gravity treadmill.  It felt great to be walking with a pretty normal gait
at 75 percent of my body-weight, and it was cool to be able to watch
my stride on the monitor.

POA works with lots of kiddos.  Here, Jade and Kai pose for a pic with
Bella (second from right) and her family.  Bella was adopted from the same
province Kai is from.....and as you can see, she's super-cute!
We are hoping to move ahead to create my definitive socket within the next couple of days.  I have been wearing a series of check-sockets (see-through plastic sockets which are modified through the fitting process to ensure the best fit), and am looking forward to receiving my lighter, carbon-fiber permanent socket once the proper fit has been achieved.   I anticipate continued changes throughout the months ahead as my limb matures, but we are definitely off to a great start.