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!
