Let's Make A Deal

Mile Marker 3087:

What's behind Door Number 1?

Another leg malfunction!

At Mile 3087, Genium #2 (a.k.a. "The Loaner") stops working.  Maybe it gets a few drops of water in it.  Maybe it's a computer glitch.  Maybe it's just tired of playing second-string.

Gleaners!  Best reason
for a morning workout!

When it happens, my friend Ellyn and I have just finished a pool workout.  We're getting dressed in the locker room, gearing up for an all-important coffee stop on the way home.

As usual, I remove my water leg and reattach my Genium.  But when I stand up, I can't take a step.  The loaner leg LOCKS the knee in a bent position.

It's like Chicago all over again.  Last May, halfway across the country without a prosthetist or spare leg, I was stranded.

But here I have options.  I grab my Allen wrench.  Unscrew the malfunctioning Genium.  Replace it with my water leg, still dripping from the swimming pool.

My swim leg is great for the water, but harder to walk in.  It takes more energy, and the knee will buckle if I'm not careful.  I decide it's worth it to be able to walk out of the gym (and of course, stop for coffee).

That's Deal #1.

I send an S.O.S. to Prosthetist Tim:

When I get to Prosthetic Innovations, he is waiting with open arms.  Did I mention Tim's a really good sport?

I hand him the Loaner which is now vibrating with error signals.  "Take her to surgery," I say.

He opens the knee up.

"It's humid in there," he says.  Then he shows me several tiny beads of liquid on the inner workings.

"I didn't swim in it, I swear!"  I insist.  "It stayed in my locker the whole time!"

It's the truth.

Tim tries to reboot it, but no avail.  He puts it back on me, and I take a few steps.  It bends slowly now, like walking through thick mud.  The vibrations feel like I have a buzzing cell phone in my pocket.

Tim doesn't have any more Geniums to loan me.  And worse, he just received word that my own Genium -- which was due back any day -- won't be repaired for another 2-3 weeks.  Geez.

It's time for some wheeling and dealing.

"Do you have any OTHER legs I could use?"

We move to Door Number 2.  Plan B...

or more precisely, Plan C -- the C-Leg.

Tim goes into the lab and returns with a C-Leg in his hand.  "It was broken, but we had it rebuilt," he says.

February 2011... Time flies!

It's the type of knee I learned to walk on 4 years ago, but a newer version.  It's sleek and copper-colored, rather than silver and space-age like my old one.

"The C-Leg is an inch and a half longer than the Genium,"  Tim says.  "Are you willing to give up your rotator for a while?"

The rotator, in case you're wondering, is a little switch that lets me turn my leg to the side, so I can put on pants or change my shoes without taking the whole leg off.  I love it.  It makes life easier.  But it takes up an extra inch of valuable real estate!

I tell Tim yes, I'd give up the rotator to have a knee that actually works.

Tim aligns the C-Leg on my socket and hooks me up to the computer.  In 5 minutes, I'm walking more smoothly than I have in months.  Functional leg?  Check.  Deal #2 is complete.  It feels like I've won a grand prize!

Then Chase walks in.

You might say he comes through Door Number 3...

Chase is a firefighter and paramedic.  He's also an amputee -- right leg, left arm.  You may remember him from the great "Stairclimbing Showdown" arranged by PT Deb a few years ago.

Today Chase has stopped in to pick up a new liner and -- it turns out -- to claim his old C-Leg, which has just been rebuilt.

Prosthetist Chris goes into the lab to get Chase's leg.  He's gone for quite a while.  He turns the place upside down.  He cannot find Chase's C-Leg anywhere.

Let's Make a Deal  becomes Whose Leg Is It Anyway? 

Through the process of elimination, we discover the answer:  I'm wearing Chase's C-Leg!

"Mind if I borrow it?" I joke.

X3:  the next generation Genium

He really doesn't mind.  He's on an X3 right now, and it seems to be functioning okay, aside from a few strange sounds.  Prosthetist Chris says that's not bad enough to order a loaner -- yet.

Apparently, leg malfunctions are an epidemic this summer.

Before I leave, we make another trade.  Chase has used a few different running legs but never the Ottobock Fitness Knee.  Since my foot isn't healed enough to run, I offer to let Chase try my running leg while I wear his C-Leg.

It's Let's Make a Deal, amputee style!

So what's behind Door Number 3?  

Not exactly a new car, but a NEW LEG!  Well, a rebuilt, slightly used, hand-me-down leg...  But hey, it totally works!

And I got a pretty good deal on it.

Please Help Us Keep Walking

Mile Marker 3050:

Dear friends, family, blog followers, and readers,

How much are your legs WORTH?

How much would you SELL them for?
How much would you PAY to get them back?

Silly questions, maybe.
But for amputees, they're very real.

As you may or may not have heard, Medicare has proposed new changes in their guidelines that, if implemented, will negatively impact amputees across the country.  This is not just my opinion.  It's echoed by prosthetists, prosthetic companies, physical therapists, rehabilitation hospitals, amputee organizations, and many others.  Everyone's concerned.

Since private insurance companies base their coverage on Medicare standards, the effect would be devastating.  It would impact trauma survivors, cancer patients, veterans, children, and anyone else who has lost a limb.

The new rules would restrict access to prosthetic limbs and modern equipment.  They have the potential to send the prosthetic standard of care back to the 1970's.

That's right -- back to the technology that existed before cell phones, home computers, voicemail, and the internet.

Prosthetics have come a long way since then.

But if these new standards are adopted, modern prosthetic components such as carbon fiber feet, feet with integrated shock absorption or rotation, hydraulic knees, microprocessor knees, and gel liners will NO LONGER BE THE STANDARD OF CARE.

Would you like to go running in your Keds from the 70's?

I don't think so.

As an amputee, I can tell you prosthetics are not a luxury.  They are a necessity and a way of life.

I use EVERY ONE of those modern components EVERY DAY.  I'm not talking about swimming, or climbing, or skating, or running.  I'm talking about WALKING.

Getting around should be a right, not a luxury!

The good news is that these changes are still up for public discussion.  While we live in a country where insurance policies often dictate care, we also live in a country where our voices CAN BE HEARD.

I'm thankful for that.

Please help support me and other amputees by signing this online petition to the White House.  It takes only a few minutes and can be signed by anyone -- whether you use a prosthesis or not.

Thank you!

The petition needs 100,000 signatures by the end of August for the White House to act on and respond to it.   I would sign it a thousand times if I could!

Please consider signing.

Click here to sign the White House petition.

You can also copy and paste the following link into your browser: https://petitions.whitehouse.gov/petition/rescind-medicare-proposal-restricting-access-prosthetic-limbs-and-returning-amputees-1970s-standards-care

So how much would YOU pay for new legs?

Hopefully you'll never have to find out.

Thank you for standing up for amputees nationwide!

Walk on!
--Rebecca

Click here to watch a great video by Prosthetic Innovations. #NotALuxury

Click here for a more detailed summary of the changes and how they'll affect amputees.

Click here to sign the petition.  Thank you!

Rebuild Her

Mile Marker 3030:

Ever feel the need to rebuild yourself?

Maybe it's that I've ventured out early on a Saturday morning.  Or that I've finally picked up flowers for my balcony.  (Or, more likely, that I've just downed a very strong coffee from Whole Foods!)

Whatever the reason, at Mile 3030, I have an undeniable urge to PUT MYSELF BACK TOGETHER.

If you've been following this blog, you know things have fallen apart.  My cousin recently passed away.  And all other concerns pale in comparison.

Yet somehow, they drone on.  After 6 weeks on crutches, my foot pain morphs into sciatic pain, back pain, and neck pain.  Then the brakes of my car start to squeak.  My air conditioner, toilet, and garbage disposal go haywire.  It seems like I lose a piece of myself every day.

Thankfully, there's a bionic buzz in my ear.

We can rebuild her.

The idea rescues me.  It reminds me of the first words I heard upon waking up in Jefferson Hospital's ICU.  You're going to be bionic.

Never underestimate the power of optimism.  It's saved me before.

Some fixes are easy.   I call my good buddy Jim to schedule a repair for my car.  Then I call the A/C guy and the plumber, and after two visits each, my apartment is healthy again.

Rebuilding my body proves tougher, but I'm up for the challenge.  I am tired of pain.

I locate a healing center that does acupuncture.  I email Vanessa, the trainer at my building's gym, to find out how to use those fancy machines.  I set up a PT eval.  I start eating more protein and drinking green tea.

But the newest idea develops from a pep talk with Chris.  He suggests building strength in the water.  Reluctantly, I join a pool with a short-term membership.  Then I pack up my bathing suit, towel, leg kit, Allen wrench, and "water leg" (formerly known as "climbing leg").

In a gallon-size Ziploc, I seal a list of exercises labeled Rebecca's Pool Recovery Program.

If this choice seems obvious, I need to tell you a secret -- the pool is not my thing.  I won't drown, but I have never liked swimming.  I'm terrible at it.  So to make myself go, I say, This is not swimming, it's exercising!   And in case that doesn't work, I bribe myself.  After 5 workouts, I will buy a cool t-shirt from behind the front desk.  When motivation fails, shopping usually succeeds :)

It does.  I start swimming.

The first session goes smoothly.  The second session, not so much.

Mid-stroke, my socket valve springs a leak.  Water seeps in.  The suction breaks.  The liner peels back.  My little leg is suddenly and shockingly free.

I am flooded with sensation.  My residual limb has never been "undressed" in the pool.  I'm hit with a wave of self-consciousness.  Although other swimmers don't seem to notice, I feel the weight of their eyes.  Knee-deep in PANIC, I lift my heavy prosthesis out of the pool and shimmy on one foot to a chair.

I want to limp into the locker room, but I know myself.  After an incident like this, I might never come back.

So I even out my breathing.  Slow my heart.  Lean the prosthesis against the arm of the chair.  Inch my way back toward the pool.  Legless.

The fear is like an undertow;  the exposure, like skinny dipping.

I go against the current.

We can rebuild her.

The water pokes at my little leg like strange, foreign fingers.  When I try to kick, the imbalance nearly flips me over.

I last only a few minutes, but it's enough to count as a building block.  I'll be back.

The next day my socket fails again -- this time, at the gym.  At least I'm within my comfort zone.

No worries, it's' a loaner!

I'm pedaling the NuStep, a recumbent bike that resembles a Flintstones car, when my Genium tumbles to the ground with a THUD.

Startled gym-goers turn my way.

"Just a leg!"  I say.  "Nothing to see here!"

We all get a laugh.

I am rebuilding.

Maybe it's the endorphin rush of trying new kinds of exercise.  Or the joy that comes from planting flowers on my balcony....

Or, more likely --  that the orthopedic doctor has FINALLY told me I can leave my crutches behind!

Yahoo!!!!

Whatever the reason, I am putting myself back together.  Not at bionic speed.  But it's better than falling apart.

Plus, with two more swim workouts, I'll earn a t-shirt!   (Hey whatever works, right?!)

We can rebuild her.