I was involved in a serious car accident at the age of 18 and broke my neck in three places at C4, C5, C6, my back in two at L1 and L2, my femur and my pelvic. You can imagine, I am sure, that this experience was nothing short of a real wake up call.
I, along with many of you, was thrust into an unfamiliar world of issues revolving around health, healthcare, insurance and disability. Each day I have faced a new feeling or thought around my car accident or a new medical issue or concern around my disability or new fear or frustration around my healthcare. And each day I am faced with a choice.
I had to learn how to walk all over again but I feel fortunate that I have come so far as to walk with a cane and two lower leg braces called AFO’s or Artificial Foot Orthosis and/or Ankle Foot Orthosis. (Basically AFO’s hold my toes up so that I can walk without dragging and tripping on them.) I am an “incomplete paraplegic” and have very little movement from my knees down. I have to say that through out my years of being disabled, I feel like a lucky one; one that has had the opportunity to stand on my two feet, and place one in front of the other when I very easily could have been JUST LIKE our hero, Christopher Reeves. My glass is definitely more then half full.
I am 44 years old now and choose to be happy in spite of my hardships. I must admit there have been times when I was not as strong as I wished I could have been but mostly I have pulled my own. However I must admit that I am human and literally was about to throw in the towel when it came to an issue that I have been fighting for years. I almost gave up and that scares me and that is exactly why I had to write this article.
If you are disabled, or know someone that is, then you totally understand the difficulties with health care and the endless battles for medical coverage over items that are not only necessary but a part of your actual sanity! One of my own personal and largest battles has been to get an AFO made personally with my specific disability in mind. I am very active and still independent which apparently makes me a rare case in AFO’s? (I leave that sentence with a question mark.)
In case you don’t know, most AFO’s are made of a plastic-like material that has been cast from a mold taken of your leg. That plastic is all well and good for some, but NOT EVERYONE! I have been unable to sit back and simply settle for a life that is etched out for me by the medical community when my case is unique (as is everyone else’s). If you know there is a way to make your life more fulfilling, more independent and hence less emotionally taxing you search to find ways to make that happen.
I have been searching and pleading with many orthotists in my 26 years of disabilities to hear my needs and my understanding of my body and help to create the perfect brace for me. Unfortunately, they could only do so much – given their company, or their title or their lack of expertise – or all of the above.
Just last week, I traveled via plane all the way from New York to Tampa Florida dreaming that I was going to find that “one in a million” orthotist - and I have to be honest, I felt this was my very last hope. I said to a friend of mine, “This is my last hope. I simply can’t fight this battle any longer,” and while she didn’t quite understand the magnitude of that comment, I knew that I had to move on and not dwindle on the dark side of hope. Let me give you an example of what I am trying to say here. When I was first in my car accident I asked myself, “Why did this happen to me?” and I realized at that moment that I would never have an answer to that and going there would not be a healthy place to go. I never asked that question again. Instead I think, “why not me?”
I was beginning to lose my drive to keep my head above water. I didn’t really know what that was going to feel like or look like for me when I stopped having my glass more then half full, but I was literally - for the first time - reaching a place of great hopelessness.
This is how I ended up going to Florida to find the perfect brace. A local orthotist that I had been using tried a couple of braces on me that have only been out for a few years now and one of them was like a dream come true for me. I had the drive back. The drive to walk everywhere! It was awesome. I was renewed with hope. And then, the brace broke. In fact, they break about every two months and if you are in a museum in New York City with your son and your brace breaks, it can end a happy vacation real quick. Without legs, you can’t move! I guess I could have been carrying an extra pair in my backpack in case one broke and with that in mind I better carry along another cane too! Come on! How difficult is it to make a brace that is reliable?
The makers of the braces guarantee one replacement a year but if they are going to break every two months, well, that leaves 8 months of a year without braces. Or you pay – which wouldn’t be a problem for someone with boo-coo bucks. One of these braces is $800 a leg. Yes that is right, $800 per leg and IF your lucky, insurance might consider a new pair every couple of years. So unless you are financially stable, or forget that, let’s get real and call it what it is, stinking “RICH” then it isn’t happening. No, instead your back to square one in the plastic braces that hurt your back when you stand on them because they are like standing on a concrete slab all the time. (Can you imagine, after breaking your spine in 5 places!) Not to mention, the fact that the plastic braces make you walk like Frankenstein because it is seriously like wearing a cast all the time! That means that every time you walk you mess your gait up and eventually you walk badly because that is what you are training your body to do! There is another option however, you could sit in a wheelchair from now on and watch the atrophy set in and the weight poor on and your independence dwindle along with your drive to stay in shape and be active. This, my friends, is not a place you ever really want to have to go to.
I had pleaded with my orthotist for help but he was at a loss so I went elsewhere. This new place, (a large and well known organization), had a great guy help me that seemed to really care. He listened to my needs and analyzed my gait and spent a couple hours with me. He suggested another type of brace that is on the market. I thought – “Great! Maybe, just maybe, this will do it.” Then they told me that my insurance wouldn’t pay for them so I would have to pay myself. Instead of them charging me what the insurance would pay, which was $1200, they had to charge me $1900. I couldn’t believe it. You mean to tell me that you are charging me $700 more personally because my insurance refused to pay it? Then the secretary tried to tell me that having insurance was like a “coupon” so that is why they didn’t charge so much to the insurance. Now, sit with that one for a minute without blowing your top! I asked to speak with the manager and he eventually called back explaining that because it is such a large organization they had to follow policy and procedures and he had no other option but to charge me the highest price. I went back to my local orthotist and he agreed to charge me what insurance would agree to pay which was $1200, which I had to pay, on top off all the other braces I had to purchase the past year. Before I left his office, he kindly asked me, “Do you mind if I ask why you went to another office?” I looked him straight in the eye and I kindly said, “Because you weren’t listening to me.”
He left the room and came back with a number. The number was for an orthotist in Florida. He said, “I have heard that this guy will make something specific”. What took so long for me to get this information? Leaving his office was deflating but nothing I hadn’t already dealt with for so many years previously. I just began to feel like the fight for my walking life was becoming too much of an emotional burden on me. I was being faced with a choice and I was having a difficult time being positive still.
I came home and called the number and spoke with this guy named Wade Bader. He was the owner of Bader Prosthetics and Orthotist. He listened intently. He asked a few a questions and sent me a photo on line of some of the things he has done. I felt very comfortable that this was an option for me and as such, I had no other alternative but to poor the money – one last time – into my hopes of finding someone that would hear me - that could actually do something about my issue, let alone at a cost that was not out of the ridiculous ball park but within the cost of any other brace.
I booked my flight at a cost of $178, booked a room for four nights at a cost of $398, rented a car for another $178 and was on my way. Does this seem ridiculous or just desperate? Yes, but remember, it was my last hope. I didn’t really know what I would do after this but I wasn’t willing to give up yet.
I left my house at 3:30 in the morning to get to the airport at 4:30 for a flight leaving at 6:00 arriving in Tampa at 9 something. I got my car, checked into the hotel and went drove to the orthotist some 11 miles from my location. Just to give you an idea of how desperate I truly was.
At first I was thrown because the place looked like someone’s house. It was on a residential street. I was immediately scared that I had come all this way to be let down yet again. I walked into the office and it was very different from any “medical” facility I had ever been in. I sat in the chair and waited momentarily. I was ushered back to a room and soon thereafter here came Wade. We did all the normal stuff I always did at every other orthotist but there was one difference. Wade listened to me. He actually understood that I might know more about my own health then him!
Needless to say, he made me my braces and I am full of the will to fight for my walking life again. It has taken me YEARS of searching, boatloads of money, tons of patience, and faith but it has happened. If you or anyone you know needs AFO’s or a new leg, or any other prosthetic, remember this man – he will answer your pleas and do the best he can to see to it that you are fulfilled. In talking to him and meeting his tremendous staff, it was obvious to me that he too has spent many years of blood, sweat and tears trying to create a brace that is more effective. His efforts are definitely paying off today because I am only one of his many happy customers through out the world. The culmination of 15 years of experience, research and development, trail and error and a lot of frustration on his part has made a large contribution to the happiness of mine today and for that I am very grateful indeed. In the meantime, let me save you years of upset, fear and sadness and point you to the right man because there is a light at the end of tunnel and his name is Wade Bader. He can be found at 1-813-962-6100.