Wednesday, June 22, 2011

Changes, Some Good - Some bad

In the good news department, TSA is making changes to airport screenings for children. Hopefully, changes are on the horizon for those of us with other "issues." Until then, it's still recommended that we check in 90 minutes before flight time for our "heightened" security screening.

In the bad news department, there were changes to our health care contract. Now, the same restrictions that have been applied to prosthetic devices has been applied to orthotics. One would think that the O&P industry would be up in arms over this (no pun intended!). When chatting with a prosthetist recently, he was as frustrated as I was. These people are well educated and trained to help us get on with a normal life. We have life-long relationships with these professionals and spend hours with them compared to a few minutes with our physicians. They want to provide the best care and offer the best prosthetic for their patients. When their care is limited by inadequate insurance coverage, they can only offer sub-par or "basic" prosthetics and now orthotics. "Basic" means that you can dress yourself and use the restroom unassisted. Anything else would be considered "enhanced performance."

I gave a motivational presentation to a group of parents of children with prosthetics this last weekend. These parents want their children to be able to do anything that they want to do, and almost anything is possible now with all the prosthetic advances, but not if they are underinsured and not if the prosthetics industry - I'm talking about the makers, not the middle men and women in the O&P industry - continue to price prosthetics in the range of a couple of luxury cars or a small home. 

I was also approached by a professional women, a grandmother of a little girl with a congenital arm malformation. This lovely woman was from another country and culture. Her questions to me were direct and made me reach into painful places that I didn't want to remember. "Why do so many amputees show their prosthesis instead of covering them up?" Ouch... as I stood there proudly showing off my C-leg in a pair of shorts. I explained to her that, in the past, I would have kept it covered, but now, people are more accepting.  "Are you married? How long have you been married?" Clearly she wanted to know if someone would love and marry her grand-daughter. When I told her that I married once, too young, only because I thought no one would marry me - a cripple - she seemed stunned. "But you are so beautiful," she said. That gave me pause. She perceived me as beautiful, yet she worried that her grand-daughter might not be seen in the same way. I wish I could have spent an hour with her, such a lovely woman with so many concerns. I only discovered in later years how much my mother struggled with these negative perceptions and how she had to fight to keep me in public school instead of a school for children with mental and physical disabilities. What would I have been had she caved in to societal pressure of the time?

I walked away from that meeting with a profound respect for the parents there and a renewed appreciation for my own. With their support, determination, love and persistence, they made me what I am today.

Tuesday, June 14, 2011


Friday, June 3, 2011

ACA Conference

I had a wonderful time at the conference.  It was very informative. A lot of people are dealing with chronic pain and there were two excellent sessions dealing with this topic. There were gait training sessions, glimpses of new technologies in socket designs (nothing earth shattering - some twists on the basic designs but way cool socket art!) and demonstrations of newer knees. All that is well and good, but let's get to the insurance fairness topic.

First, for several really good reasons, the term "prosthetic parity" is being dropped for "Insurance Fairness" (for who?) for Amputees. Makes sense and cuts to the chase. Senator Snowe reintroduced the bill in the Senate (S.773) and word on the street has it that the House version was reintroduced within the last few days. When I get the details I will draft two sample letters to send to your Senators and Representatives. In the meantime, you may notice a shift from "Prosthetic Parity" to "Insurance Fairness" on my site.

Second, we had a chance to talk with one of the higher ups at TSA. It was a reassuring meeting and the needs of people with disabilities are being discussed. Again, we should expect some changes soon, including (maybe) a way to opt out of the cast scope. One physician in the audience pointed out that the so called "minimal" X-ray exposure from the Cast Scope, when multiplied by the 4 or more different views times 2 per trip, times 20 or more trips per year quickly adds up to maximum exposure. Add that to the cumulative exposure that we with multiple orthopedic procedures receive or those who lose a limb to cancer and are exposed to radiation therapy... one person's "minimal" exposure is another persons tipping point. Thankfully, the ACA is working with TSA and we can expect some resolutions soon. We all understand the need for National security. And, as difficult as it is to tolerate, especially when we have already experienced limb loss, insurance discrimination and chronic pain, yes, because we are amputees, we must endure the additional screening.

Wednesday, June 1, 2011

It's June...

Where does the time go?

What's new? Well, the neuroma is hanging in there. It has a life of it's own. It has its very own tiny brain that keeps seizing and sending pain messages up to my brain. I think I have it beat and then when I do too much (i.e., walking - as that asking too much?) it comes back and wrestles me to the ground. I hate it. Sometimes I think about cutting my leg open reaching in there, grabbing that evil, gnarly monster and biting it off with my teeth. It's the only thing limiting me at the moment. I have my strength, the socket is great, the C-leg is perfection. Turn me loose and let me go, please. I'm up to 2700 mg of gabapentin and 25 mg of amitriptyline. I'm in a stupor and it still gnaws at me. Gnaw, gnaw, zap, zing, tingle, spasm, wake up with the sensation of someone hammering a nail in your heel (which isn't there - neither the heel or the nail!). So here's the deal. We're going to electrocute the little sucker. A little electroshock therapy and hopefully some of those aberrant neurons will fry. Zap me? I'll zap you back. Bwa-ha-ha! Stay tuned.

The Amputee Coalition of America is having their National Conference in Kansas City. It starts tomorrow. What will it be like going somewhere where everyone is like you and you don't have to explain anything? Normal? Huh. What a concept.

We'll have an opportunity to talk to a TSA representative and to work on the parity issue. About time!