Sunday, January 15, 2012

December Update from Brian

I hope everyone good holiday and 2012 is off to a good start. I went back to Raleigh for Christmas and stopped in Charlotte on the way to and from Atlanta. It was great catching up with friends and family in both places. I really miss the fact that the drive from Charlotte to Raleigh was a quick 2.5 hr ride and the drive from Atlanta sucks being 6 hours! I made sure I got to stay a few nights and see everybody because I am not exactly sure when I will be back.
The family and I had a good time with some dinners, church and some gifts, mostly for the kids. It is always fun to watch them open gifts and how excited they get. It is always good to go home and see people but I would probably say this is the most I ever did not want to leave.  That is really saying something because I have always been someone who likes to be where their stuff is located. I like my TV, my bed, my remote, my shower etc. I have always been like that but it has gotten even more that way since my accident. That is a large in part with regard to how I have to worry about accessibility also.  I miss the days where I could go anywhere without thinking about things like that and even the floor was good enough for me for sleep.  For those reasons I spent most of my time in a hotel that is only made possible by my friend, Trevor, helping me out with the rate--I owe him big time for that. He has done it for me countless times. 

This time, even as I was leaving my parents house to head back to Atlanta, my dog, Rocco, jumped into the back seat like he wanted to go. That is something he has never done before and made me feel bad since I am not sure when I will be back.  I miss him and I think I apologize to him all time since this is not what I promised him when I got him my last year at NC State. For those who do not know Rocco, he is a Rottweiler/German Shepherd mix I rescued when he was 3 months old.  I was supposed to have a fenced in yard for him at this point. I am very fortunate that he has been taken in by my parents, who love dogs and have a fenced in yard and a couple of lady friend dogs for him to mingle with.
I am getting used to my new schedule with both working and therapy. The first few weeks it wore me out pretty badly but I am getting used to it and for the most part enjoying my work.  I was hoping to have the stim unit I mentioned last time I blogged but as expected it has been a little delayed.  Again, this stim unit is intended for people who have injuries down at the lower part of the spinal cord, the roots, where it branches out and takes signals to your lower muscles. Although it is not available yet in the US it has been labeled as beneficial by some of the best US spinal cord injury doctors. They claim over time it can restore muscles. I believe it will at least make my skinny legs a little better and hope that it does help restore the strength of my muscle control. 

Although it is condoned by the research folks at the Shepherd Center, it was up to my dad and me to figure out the financing to make it happen.  I guess like as it is with a lot of things, funding is something tight for everyone these days. My dad and me took the time to write a proposal to the company conveying what we were trying to do and asking for any help we could get from the company discounting the item, since I would pretty much be a case study for them here in the US.  I am fortunate that my dad has experience in writing things like this so between both of our words and his formatting I think we put something together that was pretty well put together. It was shown and supported by the folks at Shepherd but it was totally up to us to submit it.  I thought it made sense for them to do this to give the proposal more credibility but I guess it is just a scientist thing.  They did allow us to include their contact info on the proposal we sent.
Unfortunately, it took a few weeks for us to hear back from them, but we did end up getting a small discount of a couple of thousand dollars off the device.  It will be here in a month, being shipped from the Netherlands, but it is another week or so before the updated version will be ready and it also has to clear customs.  The fact that I am now working at a company that handles international shipping may help speed this process up or at least prevent it from slowing down.  It is a shame that it is so difficult to get something here that could really help so many people out. I have read many articles saying how the slow process of FDA approval with all the red tape is putting the US behind in the medical industry.

My dad and I also look forward to doing what we can to help this device become available to others that need help. We have actually been encouraged by one of the top Spinal Cord Research Doctors to go after this and make it happen. We are planning on starting with war veterans since a good amount of them come home with spinal cord injuries like mine. I have had so many people help me out that I look forward to helping others.  I will keep you updated on that and hope to have the stim up and going here in a few weeks.