Wednesday, June 29, 2016

2016 Update

This is my first post of 2016!  

My posts have not been frequent due to there not being much to say and that I have been pretty busy.  I am busy doing my home therapy workouts or treatments, school, and working.  I spend about 2 hours a day, 5-6 days a week doing my Austrian Estim while I stand in my standing frame.  It is pretty important that I keep this up since it is helping keep my leg muscles tissue healthy.  If I want to be able to regain the use or control of muscles one day, it is vital that I keep them healthy.  In addition to keeping the tissue in good shape, it also helps keep my legs from getting too grossly skinny and helps my pants and shorts fit a lot better.  In addition to doing my stim at home, I also try to do some upper body work with dumbbells and even crawl around my house to work my core and hip flexors.

I have also now completed 32/36 hours in my Masters in Healthcare Administration program.  I somehow still have a 4.0 GPA with only 2 classes left until I am finished.  Unfortunately, the 2 classes I have left are not offered this summer, so I will have to wait until late August to start.  Learning this was a little frustrating since I felt I was in a good routine and really wanted to just knock it out.  The 2 classes total 4 credit hours and are accelerated so it will only take me 10 weeks, so I expect to finish in late October.  While I am excited to finish, this also means that the clock starts ticking and I have 6 months to start paying on that dreaded school loan.  So while I am working some now, in the not too distant future, my work will become a more important, larger, and necessary part of my life.

May also brought on another Hope To Walk golf event.  This year we changed it up and did it at Devils Ridge in Holly Springs.  I think it was enjoyable to make a change and we had nearly perfect weather, which was a large part of the reason many commented that it was the best one yet.   We had another great turnout and the motivation behind this year was my upcoming move to Louisville, Kentucky.  I start treatment there on July 18th so I will move on the 15th.  I have made some short term trips there but this one will be for 6 months and is something I have been waiting on for about a year.  I am excited about the opportunity, but when I started my recovery journey, I never expected it to take me to Louisville, KY.

I will be working for the same group that has put an implant inside 6 patients that have led them to be able to stand, move paralyzed muscles and regain the lost body functions that some SCI injuries cause.  I have been pushing on them to put this implant inside me and I do think I would see some good improvements or gains but getting it done is complicated.  As I have said before my injury is a little more complex than most with less than 20% of all injuries being like mine.  Most of my damage is at the bottom of the spinal cord, where it roots out and provides the connections to the muscles of the lower body.  The six with the implant all have their damage in the long straight portion of the spinal cord, which, in theory, is easier to fix.  While it may not benefit me, this is one of the treatments The Walk On Foundation has worked to help fund and nudge along.  Though not a homerun cure, the benefits alone would be life changing for a lot of people.

What we will be doing, I am told, is trying to duplicate the implant but doing so from an external source.  We will hook up every muscle in the lower body to electrical stimulation and we will be using stim settings that are only allowed to be done at Frazier.  The settings are designed to allow the stimulation to go deep enough to excite the nervous system, as well as the spinal cord itself.  This could lead to more and stronger signals passing around or through the injured areas, which could lead to gains in function.  We are not sure what will happen, but we do expect something positive to occur.  If my time there justifies doing so, I will be trying to purchase the device to continue it at home.  We have been delaying this trying to time it up for when there will be no delay between my stay at Frazier and my ability to purchase the device to continue it at home.  It falls in the hands of the frustratingly slow-moving-FDA. While I am looking forward to starting this treatment, I have already told the Director of Research that I plan to remind her weekly that I need to be given the implant. 

So, there you have it...I have been busy trying to find a place to live and trying to coordinate packing things up and making that move here in a few weeks.  I will plan on doing an update shortly after I get moved in.

Thanks again as always for your interest & support in this journey!