|Andrew & Myra's Wedding Sept 2011|
I actually just made my first trip back to Raleigh since I moved to Atlanta for my sister Myra's wedding. I did not enjoy the six hour car ride and it made me appreciate how easy it was to get back to Raleigh when I lived in Charlotte. Despite the long drive overall it was actually a pretty good time despite having to put on a suit and wheel down an aisle. It was strange but good to see my tomboyish sister in a wedding dress. We all think she married a good guy and I enjoyed meeting his family for the first time. I also really enjoyed taking my nephew, Owen, to the Lego Store before I left on Sunday. It was not just that I love Legos but I enjoyed watching Owen pick out his belated 4th birthday present, since I missed his party in August. He loves his Legos and dominates sets meant for kids 2-3 times his age.
In therapy or not, my family & I, especially my dad, have been fighting so many battles since my accident. Battles with insurance companies, hospitals, vendors, and doctors--amongst others. It can be very exhausting at times and I cannot say we have won them all but we have done about as well as anyone can. You will hear people say that every SCI (spinal cord injury) is different. As time goes on I have found that the lower your injury is, the more limited you are in recovery options and treatments. I have a low injury at the T11 level, which would lead you to believe the lower the better--but this is not true in the world of SCI. I have what is called a LMN (lower motor neuron) injury, which is more damage to the roots at the the bottom of the spinal cord. In some ways it is very similar to the neurological issues that come with Lou Gehrig's disease. A LMN injury leads to flaccid muscles and atrophy, which is why I have such skinny legs and weigh maybe 25-30 lbs from what I did before my accident. This makes me sit on bone all day, which does not feel good and makes all my shorts not fit as they should.
The most frustrating part of a LMN injury is the exclusion I have from most of the research studies going on. Other then therapy, research was one of the main reasons it makes sense to be at the Shepherd Center in Atlanta. Currently they have nine research studies and I qualify for zero because my injury is too low. I cannot tell you how frustrating this is for me on a daily basis! I see the people in these studies daily and see the FREE therapy that they receive. One study in particular drives me crazy. It is pretty much the same nine hours of therapy a week that I do, except I think they wear heart monitors and I pay $96/hr!!!! This study is a six month study, which would save someone like me $21,000. That would take a lot of financial concern and pressure of my family and me, but the bottom line is I just do not meet the requirements.
A few months ago I became aware of a stim device designed specifically for my type of injury. I was excited when I saw this as I read comments from prominent US research doctors that the device could maintain and even RESTORE paralyzed muscles. Unfortunately, the device is not available in the USA and not approved by the FDA. The device is made in Austria and available in Europe. After communicating with the developers of the device, they said I could get it if I got one of my doctors to sign off on it. So I quickly scheduled an appointment to ask my SCI doctor at Shepherd. Despite providing him with 30 pages of documented research and data that was done over a decade and in six different countries at 20 different Rehab Facilities that showed the benefits, I was told no. The reason behind the No from him and any other doctor is concerns over liability, which I have mixed understanding about. The no was not an answer I wanted to accept so I decided to wheel myself up to the research people at Shepherd. After dropping by unannounced a few times to plead my case, I actually got a meeting with the two doctors that head up research. I was pleasantly surprised how receptive they were to my hopes. We left the meeting with the hopes of doing my own small research trial with me using the device that we hope will benefit myself and eventually others. We just have to work out some logistics and a few other details and get things up and running. This has probably been one of the most encouraging developments I've had in my therapy and road to recovery to quite some time.
Like I said at the beginning of this post, I feel like I am due for some good. I have had to deal with a lot of complications from my SCI that a lot of people do not. Only a low percentage of people get SCI injuries. Along with my SCI has come heterotopic ossification, which only 15-20% of SCI injuries get. I have dealt with an unexplained leg fracture, which I had to have surgery on after it not healing. My surgeon told me that 95% of bones heal, so I guess I am in that special 5% minority also. I have to try not to focus on these things and remind myself how I am one of the minority of SCI victims that have had the support from family and friends like all of you to be at places like Shepherd and pay for all these things, since they are not cheap. So I am looking at getting back to therapy and taking steps to getting the stim unit as the beginning of good things to come over the next few months.