Wednesday, September 16, 2015

What is the "Appearance of a Normal Gait"

Yesterday, a lot of my Facebook friends got an update from me that I felt was pretty cool. I got a lot of feedback from it that was very positive. I was on my way home when my wife called and asked me to swing by the grocery store and pick up a couple of items we needed. I pulled into the lot and immediately headed toward the handicap parking. There were 5 open spots and I took the one furthest from the door. It's a decent spot and I have a blue tag, I wasn't doing anything wrong, in fact, I felt pretty good about the fact that I took the furthest handicap spot that was there. I got out, locked my truck and headed into the store. About this time a woman coming in from the lot behind me shouted "Hey, you know those spots are for people with handicaps, right?"  I stopped and faced her, and said "I am, but thank you for speaking out about it. Too many people abuse those spots."   I think that she noticed that my pant leg didn't quite fall correctly down my leg and my ankle was showing. She started to apologize and I know that she was feeling embarrassed about saying anything. I made light of the whole situation and I found out that her mother is handicapped and that she has to take her shopping she sees a lot of abuse use of those slots. I told her that I was very happy that she thought I wasn't handicapped. It means a lot to me that most people are unaware of my condition, because it means that I have come a long way in the six months since my amputation.

But it did bring up a question has been tickling the back of my brain since I first saw it in the proposed LCD DME changes to Medicare coverage. What is the appearance of a normal gait? Who exactly is to determine what is normal? How is this not a derogatory term when speaking of someone with a physical disability? The entire idea of normalizing something is based in the subjective observation of an individual, and one's opinion of normal will differ wildly from another's opinion.

The more that I think about these changes to the guidelines, the angrier I get. It is terribly obvious that people that do not have a disability are writing them. It is all about the money involved, and even though these changes do not directly affect me right now since I am not on Medicare, they will indirectly influence my insurance company and their decision on how they will cover my prosthetic care. As a community of amputees we stood up and took the fight to the one hearing they had on the proposed changes, but that cannot be the end of the battle. I have a little bit of experience in politics, having served on the city council in Johnson, Arkansas for a term. I would have continued in the position, but my family and I moved to another city.I learned a lot from that short stint in office; like how certain people in politics do what is best for themselves, rather than what is best for the community as a whole. There are some people at CMS that the changes will benefit. Lower overhead costs will allow for further waste in excess personnel as well as allowing for them to remain under budget.

These changes are primarily a function of a government run, politically motivated money scheme. The CMS is under pressure to hold the medical billing down to a minimum, while supporting as much as they can afford in benefits. Rather then attacking the cost of the items that they cover as being too expensive, they would rather not buy it at all. It reminds me of two things. The war on drugs where the DEA goes after the end user rather than the supplier, and the pharmaceutical industry, where future research is funded by an effective monopoly on proprietary knowledge. I do support that if they lay out a boatload of money for research, they should be able to recover that cost and add a reasonable profit before releasing the drug to generic use. I hate to say that there is a corollary with prosthetic devices, but the difference is that we only have less than 1% of the population needing them. Research and development outruns the usage of the devices as the next big thing appears. A streamlining of the industry to follow similar paths of research might be called for, but as technology races forward the cost of prosthetic devices probably will also.

We all want a natural gait, to appear to be unaffected by our handicap to others. While this is an end goal, we need to guard ourselves from situations where we are dependent upon the opinion of others on whether or not we can achieve that. Make sure that you keep up the pressure to remove this language from the proposed changes to the Medicare guidelines!

If you haven't contacted your governmental representatives, you need to do so, whether you are on Medicare or not. These changes will affect your insurance, and it will drive the cost of prosthetic care higher than it already is. Take a stand, or plan on sitting down the rest of your life.

Monday, September 14, 2015

We face new challenges every day

Survival kit
Last Friday was my 6 month Ampu-versery; the celebration of my life saving and life changing decision to go ahead and amputate my left leg.  A lot of things have changed in the way I do things now. I have learned to consider my activity and how to address getting something done. I am sure that most amputees have implemented similar changes in their lives, but some of my readers may not be aware of the simple things that change when you lose a limb. I have a few things that I do differently that most of us will have to deal with. I am sure there are lots of other things, too.

Some basic things that I have to remember.

  • When taking a shower, making sure that I have everything I need prior to taking my leg off. Towels, clean clothes, a good floor mat (to keep me from slipping on the tile floor) my Hibiclens to clean my liner, a liner keeper, along with all of the important grooming tools I might need. Now for most of you that are reading this, this sounds super simple. We all have done it for most of our lives. The difference is the amount of frustration that missing one little step causes. Most of the time I catch myself before it becomes an issue. 
  • When getting ready for bed, making sure I have my crutches nearby, in case I have to go to the restroom. Turning out the light before I get all comfortable in the bed. I  don't like to wander around on my crutches, so sometimes I use a wheel-chair, However using it is not as easy as it appears since it is too wide to go into the bathroom. There are other methods of mobility, such as crawling or hopping, too. 
  • Making sure that I have my whole supply of socks and tools with me at all times. I am a relatively new amputee, my volume changes on a regular basis. I usually start my day somewhere around 15 ply of socking and wind up by the end of the day at or around 20. I am scheduled to get a new socket next week so that number will come down considerably. Going anywhere without an Allen wrench is probably not a good idea. One of my favorite YouTube videos is The Amputee Survival Kit by the AmputeeOT
  • Keeping good records.
    Since the beginning I read this helpful article from the Amputee Coalition I keep a basic log of how my residual leg feels, what I do to try to fix the issue and the result of what I have done. Since I have not had very much actual peer support since becoming an amputee, I have to keep records and learn as I go along. I also read several blogs and websites dealing with amputees. I have found that message boards are usually less than helpful. Most of the important questions I have are usually answered by people that are unable to understand or articulate in a helpful manner. The solutions that are given are usually less than helpful.
  • When walking on uneven ground: Especially at night or in twilight, to take careful, smaller steps. Nothing is worse than stepping down into a depression when you expect the ground to be there. This happens to me in parks and areas where the lawn is mown evenly over uneven ground. Taking steps more carefully prevents jamming my leg down into my socket. It also keeps me from stumbling. I also take extreme care on stairs. I still have some issues with fear when it comes to stairways. Especially when they do not have a solid banister. 
  • Stay Active!!! I honestly believe this is the most important thing. A body that is in motion tends to stay in motion and a body at rest tends to stay at rest. Another way of looking at it is that there are two basic organisms out there. The organism that flourishes and grows, and the organism that perishes. Choose the path that leads to getting stronger. If you have the choice between vegging out on the couch or doing something, choose to turn off the television and DO something. It is too easy to sit and feel sorry for yourself, don't add fuel to that fire. You will be amazed at what you can do!
I think that as I progress in my ability to walk, I will probably learn a lot more over the next few years. When I get my next socket, and can reduce the number of socks that I have to wear, there will be differences in how it feels. When I decide on a different foot, there will be new things to learn on how it functions. I believe that every bit of knowledge that I glean from my experiences has a home on this blog, and what has worked for me may not always work for others. I do know that what little I did find about certain subjects will defiantly be added as soon as I can find proper context to introduce them.

Anyone that has ideas on subjects you would like me to address can connect with my twitter address @Zenshai anytime. I am on there constantly. I tend to follow most everyone that follows me, with the notable exceptions of those that just use twitter to sell stuff. Feel free to contact me. I will help in any way I can.

Friday, September 11, 2015

Potential - So very important

In my last post,  I stated that the word potential was removed from the proposed LCD DME guidelines. It is my belief that removing that word will also remove the motivation for improvement in a large number of amputees.  Since insurance companies  tend to mimic Medicare,  the proposed changes will make it much harder for some amputees to obtain the best in prosthetic care. 

I found this video that shows what happens when people underestimate those with disabilities.  It is in Portuguese, but has subtitles. It makes me smile every time iIwatch it. 

As most of my readers know I want to get a solid foot that will allow me to run,  walk,  hike, and play golf.  While my prosthetist wants me to get a C-blade,  I have a different idea.  Below are two feet that iIam considering.  Ability Dynamics Rush foot,  and Ottobock's Triton.  Both are amazing feet. I will be exploring all of the options and working with my prosthetist on obtaining one to test. Please,  if you know something about these feet,  drop me a line.  My twitter handle is @zenshai. 

Wednesday, September 9, 2015

Be ACTIVE on more than one level!

The problem with most forms of activism is that when a perceived threat or issue appears to be addressed or eliminated, activism and support dwindles.  It reminds me of a bacterial infection; when the patient begins to feel better and stops taking medicine.  The infection remains,  but is stronger than before, more likely that it can withstand future treatment with that medicine.
This analogy can be applied to the current struggle we face during the current proposed Medicare DME LCD  changes.  We have raised awareness within our community of amputees,  some of our friends and family.  However,  unless we continue to make our voices heard,  the struggle will fail.We have to reach out to our co-workers, to those we meet in the street, and most especially those that have any sort of influence with others and make them understand that this issue is much much deeper than simply care for amputees.

While we are affected most severely, due to the impact on our independence, in the proposed DME changes, there are many others that are going to be affected also. Those with MS, CP and other medical conditions that limit mobility are affected right alongside of us. The machines that they require to gain any independence will be stripped away from all who do not have the immediate wherewithal to pay out of pocket. I don't know about you, but I know that as a median ranged individual with pretty decent medical coverage and an above average income, my medical bills are eating most of my disposable income. I don't have anything left over to drop several thousand or tens of thousands of dollars on a new foot or leg. 

Private insurance tends to mimic what Medicare will pay. The Medicare guidelines provide a solid baseline that the insurance companies can use to determine exactly what they will cover, and what percentages above that line that they will be willing to spend. If we allow the Medicare guidelines to be lowered to the point that simply obtaining a new socket is prohibitive, then we will all be fighting that battle. 

In my opinion, there are two portions of the prosthetic device proposed changes that need to be amended. First and foremost would be to reintroduce the word POTENTIAL. In most cases, the potentiality of improvement is a fairly easy assessment. It would be obvious that a 600 lb 65 year old male diabetic below knee amputee would have a hard time being evaluated as a K4 initially, however without the word potential at each step, he would have no motivation what so ever to improve his condition. For example, lets take a hard look at me. Prior to the amputation: a 50 year old white male, approximate weight 310 lbs, primarily sedentary with a severe foot wound and MRSA. Below knee amputation required to save the patients life. Without the condition of POTENTIAL involved, my doctor would have been required to mark me at K2, with little hope of being able to progress. I have since lost weight down to about 240 lbs and walk about 2-5 miles per day. My goal is to progress to jogging and enter a 10k fun run before the end of the year. I am a solid K3, with the potential to reach K4. 

Secondly I think that the prosthesist should be allowed to continue to assess and evaluate the patients ability and potentiality. Quite honestly, my primary care physician, while good at diagnosing and treating standard maladies is very quick to pass on consultations to those who are better versed in a particular field. He knows the limits of his own knowledge and defers to the expertise of others. The surgeon that amputated my leg has more knowledge of wounds and wound care but not nearly as much as the technician at my O&P office. I would rather have someone knowledgeable in the specifics of my abilities make that evaluation and assess me properly.  

The bottom line is that we need to keep the pressure up on all of our congressmen, senators and any other policy makers out there. We need to organize and maintain a constant barrage of social media streams until a final decision has been made on the LCD DME changes. Whether they directly affect us now, or indirectly affect our insurance coverage later is what we need to remember. It is far easier to make a stand before the change occurs than wait for years of congressional wrangling to get basic coverage restored.

In order to find your congressmen and senators you can click HERE
On Twitter you should follow @amputeesusa @_amplitude_ @zenshai @CMSGov to get updates. 
If you have not signed the petition yet - GO SIGN IT!! Click HERE to do it.
You can post to twitter using the hashtag #notaluxury and use it to connect and follow others that are helping the cause. You can lend your support to those that are lobbying in congress and with the hearings and committees involved. We are the antibiotic, and we have to be used until the infection of this LCD to our DME has been eradicated.

Monday, September 7, 2015

Finding Support, Not as easy at it seems

According to a lot of sources, like the Amputee-Coalition as cited in this article that there are lots of support groups out there as well as peer councilors. The article states:

According to Susan Tipton, national peer network coordinator for the Amputee Coalition of America (ACA), there are about 260 support groups for amputees across the United States. 

The article seems to state that it is very likely that a new amputee would have support set up by the hospital or some other group out there. I can tell you that for me this was not the case.

This was partly my fault. The decision to amputate was made fairly quickly. My infection had progressed to the point that my life depended on a quick decision. I did not do a lot of research and had not touched base with any amputee group in the area. It wasn't until several weeks post surgery that I even looked for anyone. If you do a web search on where to find support, you will find the first (and one of the only) sources of information to be the Amputee Coalition website. Searching on there the closest support group was one in Tulsa Oklahoma (100 miles west of us) or Little Rock (200 miles east) I was surprised that there were no groups closer. Northwestern Arkansas is the home of the retail giant Walmart, as well at Tyson Foods and J.B. Hunt Transportation. There are a quarter million people living within 50 miles of where I live.

So far the only support was there has been  from my prosthetist, He is a great guy with a ton of experience, but really has no first hand knowledge of how it feels to be an amputee. It is hard to explain to people that have both legs. Short of duct taping their legs together for a week, I don't think that anyone could really get the FINALITY of losing a limb. Yes, I put on a prosthesis to walk, but I have to put it on. I tend to leave mine on 99% of the time I am awake. I seldom remove it for anything other than to adjust the sock levels or straighten out a wrinkle.

The point of this post isn't to complain, but to possibly inspire amputees to become peer counselors and to pay forward the things we have not had. I suspect that there are quite a few amputees out there that have not had any peer counseling whatsoever. With almost 3 million amputees in America alone, we have the base to make a huge difference. With spokes-people like Josh Sundquist and Adrianne Haslet, the support of great publications like Amplitude Magazine and In Motion Magazine and our drive to make the amputee world a better place - We can make a big difference.