Why Don’t/Won’t THEY Listen To Me?

I have been writing, the past few months, about my experience with ignoring my diabetes and how ignoring my diabetes diagnoses caused me to have my right leg amputated below the knee. During the past few weeks that I’ve been writing this account of my hard headed dumbfuckery, which was ignoring the management of this disease, I have often talked about the issues I have with the prosthetic system. 

To recap: I started off with a prosthetic company that would not listen to me when I told them I needed a smaller socket……because the socket I had at that time was too big. The socket is the black carbon fiber bucket looking thing shown below….

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This socket was huge by the time I had been wearing it for 6 weeks. The fit has to be correct or wearing an ill fitting socket will cause skin issues such as blisters, sores or skin irritation to the limb. I visited my former prosthetists twice to complain the socket was too big/ill fitting and requested a new socket.

He didn’t listen or pay attention.
I immediately found a new prosthetic company and a new prosthetists. Below is the newest socket and it also happens to be a new system, a suction system. The old system was a “pin” system.

This is the new socket…….

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You can see the size difference between the two sockets and if you can see that difference, you may wonder why the old prosthetic professional couldn’t see that difference….and make me a new socket that fit properly.

There is a lot of misinformation in this medical profession of prosthetic legs. I am not that familiar with the issues concerning other limbs or fingers but I’m guessing there are some issues with those amputations as well. It seems people who are responsible for the prosthetics used to assist us amputees in walking have a hard time listening to us who are doing the walking using their prosthetics.

IF you do not use a prosthetic daily, but are responsible for making and showing us how to use a prosthetic for the first time, might I suggest when a new amputee comes to you with ideas on how to make THEIR prosthetic work better FOR THEM,….YOU LISTEN.

I happen to be the one using the prosthetic, everyday, so when I tell you something is uncomfortable and then tell you exactly HOW to fix that problem for me, so MY prosthetic fits MY limb better…..LISTEN.

YES, I comprehend you’re the professional whose been doing this prosthetic thing far longer than I’ve been an amputee……but here’s where the rubber meets the road…….. I AM USING THE VERY PROSTHETIC YOU ARE NOT USING, HAVE NEVER WORN, DO NOT KNOW FIRST HAND HOW IT FEELS OR WORKS FOR MY LIMB.

Every amputee is different. We heal different. We progress different. We need different things done to get us where we need to be in order to live a somewhat normal life, which includes walking. The endgame, the goal is to walk. As normally as possible, using the BEST prosthetic system that gets us mobile. Mobility is the reason any amputee uses a prosthetic.

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This foot you see above, WITHOUT AN ANKLE, is NOT how we were born nor was it how we learned to walk. DO NOT tell me I can not start out with an ankle joint on my prosthetic foot because I wouldn’t know how to control an ankle socket/joint….when I was born with an ankle socket/joint and learned to take my first steps, 59 years ago, using that ankle socket/joint.

That insults my intelligence and my ability to get back to being normal by walking normally.

If I tell you MY prosthetic needs to be adjusted or modified to fit my limb or enhance my walking and mobility needs, PAY ATTENTION, THEN DO WHAT I ASK/SUGGEST.

Thats all for now…..we’ll see how this amputation thing goes……

Just in case I’ve not made myself clear in past post….DO NOT IGNORE YOUR DIABETES……OR YOU WILL END UP EXACTLY LIKE ME.

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My “NEW” System (LEG)

On Friday, the 19th of July, I received my second socket, which is attached to my lower prosthesis….and it fits beautifully. It’s a new system, this new socket works on the suction vacuum principal….the other system I had, to start my life as an amputee, was the “pin” system.

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A new amputee will have his/her amputated limb reduce in size a great deal in the first year. The surgery swelling and the loss of fluid in the limb will steadily get less and less as time goes by, due to healing, tissue reduction and fluid loss. It’s common for a new amputee to need up to four new sockets in a year. 

I had to change prosthetic companies because my first prosthetic company was not willing to change my socket as needed. I wore a socket that was waaaaaaay too big for my limb, FOR AT LEAST 1 MONTH. Thats unacceptable.

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Let me be clear about this entire prosthetic “game.” And believe what I tell you, it’s a game. Insurance companies won’t allow amputees to receive the very best prosthetic available, insurance companies want us amputees to start out with the lowest quality prosthetic and prove over time we deserve the very best prosthetic system. What that means is we take a test, called the AMP test, which is designed to see what “level” prosthetic we deserve based on our AMP test score, the levels are K1, K2, K3, K4. K1 is basic no frills standard type block of wood foot connected to a rod then a socket.

The higher K score you get on the AMP test, the better prosthetic you will get. Athletes who get amputations get K$ prosthetics. Average humans like me, who score at a K2 level get garbage. I scored ONE point below the 27 score needed to be a level K3. I got a prosthetic with a block of wood in place of a working ankle socket/joint.

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As you can see in the slideshow above, there is NO ankle joint or socket between the foot and rod, making it damn near impossible to walk “normal.” For 50 years I’ve walked using a foot, ankle and leg/thigh. Insurance companies and prosthetic companies tell me I am not “ready” to walk with a prosthetic complete with an ankle that works like a real ankle.

This is coming from people who do NOT have a prosthetic nor do these people know what the hell I am capable of doing nor do they know what I CAN do. I am told I jave to learn to walk without an ankle first, then once I accomplish that, I can get a prosthetic, maybe, with a working ankle and start to learn how to walk with that ankle…..

Who does that bull shit logic make sense to?

Below is the time line for my progress……

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This timeline is proof that I am not following the normal schedule insurance companies have set up for amputees. I am sick and tired of being told what I can and cannot do based on what other amputees can or can not do.

As Yogi bear would tell boo boo…..”I’m not like the other bears.”

Telling me I won’t be able to walk, control or use a foot equipped with a walking working ankle, this soon, is just bull shit.

I am pleased with my new prosthetic company, Hanger….

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My final thoughts on this prosthetic mess is this……
I should be allowed to get whatever prosthetic system that works best for my life, lifestyle and peace of mind. Losing a limb or fingers is a traumatic experience in itself so making new amputees jump thru hoops to get the best prosthetic system available, which just might make learning to walk again easy, is wrong.

Here’s my common sense solution. If a new or recent or old time amputee wishes to start out with the very best prosthetic made, let them. If after a trail period of 6 weeks, that amputee can not master the top rated prosthetic with PT/OT help and a damn good prosthetists……then drop them to the level they are comfortable with.

This AMP testing is a joke and here’s why….. I was not tested to decide which type of prosthetic I should start with……USING A PROSTHETIC, BUT USING A WALKER. Thats as asinine as giving a new driver a driving test for an automobile using a motorcycle. Think about that for a second.

Here ends my rant.

This guy who you see here, below…..is the absolute BEST prosthetist ever.

Tim Zwanziger, CP

Certified Prosthetist

 

Tim Zwanziger, CP

HANGER CLINIC: PROSTHETICS & ORTHOTICS – FIFTH AVENUE, CEDAR RAPIDS, IOWA

866 5th Avenue, South EastCedar Rapids , IA 52403

Phone: (319) 364-2767
Fax: (319) 364-1031
Hours:Monday – Friday, 8 A.M. – 5 P.M.Clinic Info:24/7 on-call emergency support
Free Parking
Most insurance companies accepted
ABC accredited

 

Slow Down. You’re TOOO Fast.

Prosthetic companies need an amputee on staff. This has become more evident to me at each visit I have with prosthetic experts who are responsible for the development of my progress toward walking “normal.” I am puzzled how an expert or “specialists” can actually be an expert or specialists…….on what I need as an amputee……when that expert specialists HAS NEVER BEEN AN AMPUTEE.

Something that makes Me go Ummmmmmmm.

Way back on February 4th, when I cane home from the hospital after having my right leg amputated below the knee, my limb was huge from the surgery and from swelling.

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The swelling decreases over a matter of weeks, as the fluid in the limb goes back to normal and distributes to the other body parts as needed. This is why it takes weeks before a new amputee can be fitted for a new prosthesis. The wound has to heal properly and the sutures must seal the wound before a prosthetic cast can be made of the limb.

Soon after the healing process has reached a point determined by the specialists, you get your limb cast for your new socket…..

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It IS a process and this process I fully understand. Whats troubling to me is the process has been developed by people who have never walked with a prosthetic. It’s exactly like asking a carpenter who works only with wood, to build a cast iron shelf….or a better analogy would be….asking an aerospace engineer who has never flown an airplane or spent one minute flying in an airplane, to design a better version of the Airbus A380-800.

People who have never worn a prosthetic can not know exactly the needs and everyday concerns of those who wear a prosthetic as a way of being mobile every single minute they are up and moving.

This is my brand new prosthetic, it’s almost 2 months old…..

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There are two very important issues I have with this current prosthetic….. ONE is it’s not equipped with an ankle joint/socket, so walking like “Normal” as one does who has a working ankle, is impossible. TWO is the socket, which is this carbon fiber part of the prosthetic….. thats the black part that resembles a bucket….

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…….Is toooo big for my limb. I have progressed far too fast by “normal” standards and need a new, smaller socket to walk comfortably and normally. That means my limb has shrunk faster than expected and I have created a problem for the prosthetic company and the insurance company that is paying for this prosthesis. My quick advancement from this first prosthesis to the next level socket that fits a smaller limb …..is too fast and that means the prosthetic company needs to make me a new socket that fits…..and charge the insurance company…..AGAIN.

Below you’ll see MY timeline for MY recovery……which is different than what the prosthetic company OR the insurance company is accustomed to seeing from patients.

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HOW DARE ME heal so quickly, get my amputated limb down to a normal size this fast, start walking on my own and needing an ankle joint like normal people, this gosh darn soon? 

What the hell is my problem, why the rush, I’ve only had this first prosthetic since May 16th, 2019….a mere 39 DAYS. HOW CAN I EXPECT THE INSURANCE COMPANY TO GET ALL EXCITED ABOUT MY SUPER SPEEDY RECOVERY, WHEN THE INSURANCE COMPANY HAS TO PAY FOR THIS STUFF?

I am NOT supposed to be out and about this soon…..

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As you can imagine, I am getting a new, better, prosthetic company with a prosthetic specialists who is indeed, special. Instead of using the pin system I currently have, to connect the prosthetic to my limb …….

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I’ll be using a more stable connection method…..vacuum/suction. A sleeve will create a suction vacuum to keep me seated/connected to the prosthetic socket. The video I am showing you below is what I need…….this 59 year old man is who I desire to be in a few months.

I could go on and on and on about all thats wrong with this prosthetic game. There really needs to be a human being who uses a prosthetic on a daily basis so that human being would know first hand what an amputee needs.

I started a GoFundMe account to get the funding needed for this new vacuum suction socket. If you are able and feel the desire to help me get the prosthetic I need, please feel free to make a donation at GoFundMe.

Have a very happy week folks,……see you next time.

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The Prosthetic Game

I discovered years ago that having an extremely high IQ, and also having common sense and a gift/curse to identify bullshit immediately…….are not the best qualities to possess in this world. 

I started this blog, after a years absence from bloggin, to educate the people who might be experiencing diabetes issues….like me….because they chose to ignore their diabetes diagnosis…….like I did. Now it’s turning into an anti insurance, anti dumbass prosthetic company rant fest.

AND I hate that.

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Clark & Associates happens to be the company I chose to get my prosthetic limb through and I am afraid that decision might have been a mistake. Now don’t get me twisted, the employees are nice enough and are somewhat competent at what they do……but lets face it, it’s damn near impossible to be knowledgeable about a “thing” without experiencing that “thing” first hand.

If you’re not a cancer patient, it’s very difficult for you to know what a cancer patient is going through and whats best for that cancer patient, because each cancer patient is different. And each cancer patient must be treated as a person unlike the last cancer patient you may have dealt with in your job of dealing with cancer patients.

Case in point…….

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This is my current leg and it has no flexible ankle joint….which makes walking the way I’ve been walking for the past 59 years, IMPOSSIBLE. Clark and Associates tells me the process for learning to walk with a prosthetic limb is as follows….. You get the most basic prosthetic limb, which has no ankle joint, and you get used to walking on that first. Once you learn to walk without a flexible ankle (an ankle that rotates, bends and flexes like a NORMAL ANKLE WOULD/SHOULD) then you move on to a prosthetic limb with a somewhat flexible ankle joint.

This somewhat flexible ankle joint is better than what I currently have right this second, but still not the normal ankle joint we all were born having attached to our foot. After I am proficient at walking on a somewhat flexible ankle joint, then I am blessed with a normal flexible ankle joint,…..WHICH I SHOULD HAVE FROM DAY ONE. 

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My prosthetic, pictured above, has NO movable/flexible ankle joint, which makes walking up/down stairs near impossible for a first time amputee. Telling me I must first learn to walk with no ankle, before I can get an ankle to walk on, which is the normal way we walk as humans, is asinine as well as just plain stupid. Why learn a task, like walking with a prosthetic limb, three times when you can learn this task once, from the start.

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THIS is what every amputee should have from day one, so the process of walking is made as easy and comfortable as humanly possible.

NOT this garbage………

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…….which has NO ANKLE JOINT WHATSOEVER….making the task of walking “normal” impossible.

I am a very advanced patient, and here’s what I mean by this statement. I had my right leg amputated on January 31st of 2019. Went home on February 4th, 2019. Received my first shrinker, to help with swelling in the amputated limb on February 14th. Received the final shrinker, before being fitted for my first prosthetic on March 14th. Took my AMP test, which told the insurance company which type of prosthetic they would be paying for on April 4th. On April 4th I was also fitted for my prosthetic limb and seen by an orthopedic specialist who wrote the order for the prosthetic limb.

Came home with the prosthetic limb for the first time on May 16th, using crutches to walk. On May 18th I switched from crutches to a walker. On May 19th I started walking with a cane to assist my mobility. On May 23rd I started walking with no assistance from any mobility device.

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On June 1st, I went out to the grocery store with Grace my fiance, walking on my own, with no mobility device whatsoever. I came home with my prosthetic for the first time on May 16th…and by June 1st I was out and about running errands walking on this new prosthetic with no cane, walker or crutches.

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Clark & Associate tells me I am not ready for a real prosthetic with a real ankle joint that flexes and rotates because I have to “get used to” walking on a foot with NO ankle joint FIRST. In other words…..I have to learn to walk abnormally on my prosthetic limb before I can learn to walk normally…..on my prosthetic limb.

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As you can see from the image above, Clark & Associates offers a plethora of prosthetic limbs but the culprit here happens to be the insurance asswipes, who decide the process of who gets a prosthetic limb, how they get said prosthetic limb and more importantly…..if they qualify for the best possible prosthetic limb or the bare bones NO ANKLE prosthetic limb……which is ME.

So I’ll be jumping through prosthetic hoops and just chillin…..until I am qualified to walk normal…with an ankle that works, like normal…..like I had for the past 59 years…… ALL BECAUSE I CHOSE TO IGNORE MY DIABETES DIAGNOSIS AND BE A HARDHEADED DICKHEAD.

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I Got A New Leg

So on Thursday the 16th of May, thats yesterday for those who are brain dead, I received my brand new carbon and titanium prosthetic leg. The entire process for a new limb is daunting to say the least, and at best, going through the fittings process for the man made limb can be stupid to those who use common sense on a daily basis.

I have the new limb and I am learning to walk all over once again.

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It took me almost 4 months to reach this point of losing my leg and getting this replacement. I’ve been battling this outcome of losing my right leg since August 15th of 2018 all because I was hardheaded, stubborn and stupid in my decision to “Ignore Diabetes.” Now had I been intelligent, which my IQ test convinced me I was, I would researched diabetes and followed conventional wisdom and sensible choices to slow down the deterioration of my leg.

I did not do that.

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This is me now, for the rest of my life. I am currently learning to walk again. Teaching my left leg to walk normal because since January 31st of this year, my left lag has not been walking normally but instead hoping, as I learned to use a walker to move from room to room.

I am currently teaching my left thigh to assist my prosthetic in responding to my mind sending signals to my thigh, to make my prosthetic move like my left leg. Thats hard work. The mind and a normal leg communicate in unison to one another, without there being a nano second between the mind signal and the legs reaction.

The prosthetic does not recognize any signals from my brain. So there is a time lapse between what I want my prosthetic to do and when it actually does what I want the prosthetic to do…and when my thigh makes the connection between both actions. In other words, the instantaneous connection between mind and limb, is gone. Forever.

So I’ll be learning to walk as if I was a 8 month old baby, I’ve reverted to being a toddler. All because I ignored diabetes. 

The good news is I met a wonderful human being and SHE has decided she loves me. This magnificent lady has stood by me from start to now as I travel this road of being an amputee.

Allow me to introduce  you all to Grace…..

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This woman is why I am alive. She is why I survived the amputation. Grace is actually what keeps me going. I plan to walk down an aisle somewhere in some island one day when I learn to walk again, to tell her I Do.

Anyway…..I now have a new leg. I now no longer ignore diabetes. Too little too late to be honest. So I close this blog post with my usual warning: Do NOT be stupid like I was. Do NOT Ignore Your Diabetes. Research the disease. Investigate the disease. Learn about diabetes. Do whatever is necessary to never end up like me……

Like THIS…..

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Ignoring Your Diabetes…… DON’T IGNORE DIABETES.

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Ignoring Diabetes Gets Me A New Leg.

I was supposed to write this blog from the start of my journey when I started “Ignoring My Diabetes”, but as per my usual with things I’m supposed to do, I’ve changed how I am going to do this. Instead of any clear format I am writing blog post as they come to me in no particular order whatsoever.

Makes it all the more interesting.

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Yesterday I was fitted for my first prosthetic leg by a prosthetic company. Now one would think getting a limb to replace the limb amputated would be a simple process. Fit the stump, order the prosthetic, make sure it fits properly then start physical therapy to train the mind and body to accept and use the new limb. NO.

I had to take an AMP Test. In order not to confuse you with the information contained in today’s installment about Ignoring Diabetes and what happens when you Ignore Diabetes, read along with the following information on what an AMP Test actually is and why it’s needed before a prosthesis can be given.

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Few things are as frustrating as having an insurance company refuse to cover equipment or services you know your patient needs. This is especially true for prosthetic devices, because they have such a huge impact on mobility and quality of life. One of the best things you can do to help your patients is to clearly document their current and potential functional status. And if they need a lower limb prosthetic, the best way to do that is by communicating their K level.

Medicare established K levels, also called Medicare Functional Classification Levels (MFCL), in 1995 as a means to quantify need and the potential benefit of prosthetic devices for patients after lower limb amputation. The rating system is still used today by Medicare, Medicaid and many other insurance companies to determine eligibility for payment or reimbursement.

As mobility specialists, you (PTs) are often the most qualified member of the rehab team to establish a patient’s K level. For you this means two things: 1) You need to document your patient’s K level and 2) You need to pass that information along to their referring physician and their prosthesis. Below are Medicare’s descriptions of the five (0-4) K Levels:


K Levels

Level 0

Does not have the ability or potential to ambulate or transfer safely with or without assistance and a prosthesis does not enhance their quality of life or mobility.

Level 1

Has the ability or potential to use a prosthesis for transfers or ambulation on level surfaces at fixed cadence. Typical of the limited and unlimited household ambulator.

Level 2

Has the ability or potential for ambulation with the ability to traverse low level environmental barriers such as curbs, stairs or uneven surfaces. Typical of the limited community ambulator.

Level 3

Has the ability or potential for ambulation with variable cadence. Typical of the community ambulator who has the ability to traverse most environmental barriers and may have vocational, therapeutic, or exercise activity that demands prosthetic utilization beyond simple locomotion.

Level 4

Has the ability or potential for prosthetic ambulation that exceeds basic ambulation skills, exhibiting high impact, stress, or energy levels. Typical of the prosthetic demands of the child, active adult, or athlete.


According to the American Academy of Orthotists and Prosthetists, no one method is considered the gold standard for establishing K-Levels. The rating is left up to the clinician doing the assessment, and unfortunately, many consider it over-simplified and too subjective.

According to a 2016 survey of prosthetists, published in the Archives of Physical Medicine and Rehabilitation, 67% of respondents didn’t think the K level could accurately capture a patient’s rehab potential. For this reason, many clinicians turn to more established clinical outcome measures (OMs).

Outcome measures commonly used to establish K levels include the following:

  • Amputee Mobility Predictor (AMP)
  • Patient Assessment Validation Evaluation Test (PAVET)
  • Prosthesis Evaluation Questionnaire (PEQ)
  • Timed Up and Go (TUG)
  • Timed Walk Tests
  • Distance Walk Tests

The Amputee Mobility Predictor (AMP) is the most frequently used outcome measure by far (by a factor of 2, according to the survey just mentioned). The AMP can be administered in as little as fifteen minutes on patients with (AMPPro) or without a prosthesis (AMPnoPro). A simple conversion table (DOCX) allows for a quick K level determination. The AMP’s use for assessing functional status of lower limb amputees was validated by researchers at the University of Miami School of Medicine in 2002, and you can find a copy of the test and its instructions in their paper here.

Whichever method you choose to determine K level, it is important that you take the initiative to communicate your assessment to both your patient’s doctor and their prosthetist. This will help increase the odds this information will be used to justify medical necessity. You can learn more about how to do this in this detailed guide created by the American Academy of Orthotists and Prosthetists.

You also want to make sure you educate your patients. The Amputee Coalition, a non-profit “dedicated to enhancing the quality of life for amputees and their families,” emphasizes the importance of patients knowing their K level. They offer a patient-friendly handout, Do you know Your K-Level?, as a free download.

Ottobock also offers a free download, Documentation Tips: Justifying Functional Level, to help ensure your patients get the devices they need.

My AMP test score was a 27, which falls, BY ONE POINT, short of K3. I am classified as a K2. The real purpose of this K rating system is to determine how “Good” of a prosthesis I will get. It’s a very ass backwards process because the higher the score one gets on this AMP test, the more technology advanced prosthesis you qualify to receive. In other words, normal people who have an amputation, and who need a better/best prosthesis, get the worse quality prosthetic if they get a low score. High AMP test scores are usually attained by world class athletes or people who train daily such as firemen, soldiers, athletes and so on.

Now one would think, using logic and common sense, that a person not so athletic, someone not in the best shape, one who has issues with balance and Equilibrium because of the lost limb, would be the ones inline for the top notch prosthesis. NO. Those who need the most technology advanced prosthetic limbs are not able to qualify because their K scores are lower than the people who score higher on this AMP test.

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The entire process from being tested to determine what quality prosthesis I qualify to receive, along with seeing an orthopedic surgeon/doctor so he can sign off on the new limb {that pesky insurance guy needs a “real doctor” to write the order}, to being fitted for the prosthesis, took 3 hours. I have another appointment set to see the prosthesis maker in 2 weeks to get a look/feel/tryout, for what is to be my new appendage. At this appointment I see how well the cast was made, how comfortable the limb fits and if I am able to make the leap from my leg to my bionic limb.

To be totally honest I went through this entire amputation in a breeze. I had no pain after the surgery. I took no pain killers. There was little or no swelling. Upon discharge 4 days after the surgery, I was able to transfer and ambulate on my own and had no issues with doing things like dressing myself or other activities of daily living. I had this surgery on January 31st. Went home on February 4th. Measured/cast for my prosthesis on April 17th. First fitting/wearing for the prosthetic limb is May 2nd. In 92 days I went from having a lower leg/ankle/foot the size of a tree trunk, filled with infection, a condition called Osteomyelitis which is an infection in the bone……to having a new limb and starting to walk as a “normal” human being.

WARNING………. The images below are gross and real. This was the condition on my right foot/ankle/leg from August 14th, when the swelling/infection/osteomyelitis was first diagnosed…. until January 31st, when the infection was removed along with my foot/ankle/leg in what is known as a below the knee amputation.

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Now one would think this ordeal would push me to the point of never allowing my diabetes to go un-managed, knowing this would be the end result. I can not honestly say that if I knew for certain, back in 2008 when I was diagnosed with type two diabetes, that I would end up here, where I am now, if I did not manage this disease correctly….that I would change a single thing. Do anything differently. I asked myself this very question a few nights ago.

The answer is …… I’m not 100% sure I’d change a single thing to prevent this amputation.

DO NOT BE LIKE ME. Manage your diabetes. Prevent a hard head or that “not giving a damn” mindset from doing this to you.

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