It has been quite a long time since my last blog
update. I am still here in Louisville
and have been since the end of July 2016.
It is definitely different here than Raleigh, Charlotte or Atlanta. While I do not mean that in a bad way, I
would prefer to be in a city where I was closer to friends and family. I am currently living in a tiny 402 square
foot studio apartment, which is interesting.
I did not even bring a lot of my stuff and barely have room for
everything that I did bring. It is also
the first time that I have to do laundry in a common laundry room, there is one
on each floor and it requires quarters and oddly they do not have change
machines. So this means I am constantly
asking for quarters on trips to the grocery store. I learned pretty quickly that paying to dry
towels is not the most economical way to do it.
Paying $4 to dry towels is not something I want to do, so I air dry
pretty much everything but I do really miss having a dryer. I miss the convenience and I am a hater of
wrinkles, so I have always used that to get them out of things I did not want
to iron. The good part about where I live is that I am 0.3 miles from Frazier,
so unless it is pouring rain, I usually just wheel myself here and many weeks I
only drive once a week. So I do not
spend that much money on gas or put much mileage on my car.
The biggest news since I last wrote is that I finished grad
school at the end of October and have earned my Masters in Health Care
Administration (MHA). I was definitely
glad to be done, as most of my weekends and a few nights a week were spent
reading and writing papers. The bad part
about finishing up is that I have to start paying on my student loans six months
after graduating. The student loan stuff
is very frustrating and I have a very hard time understanding why the interest
rates are so much higher than a lot of houses and cars!
As I have said before, the treatment I have been receiving is
something that I can only do here in their clinic. It is just Neuromuscular Electrical
Stimulation (NMES) but with settings that are not yet FDA approved. Every day I put multiple electrodes on my
legs and stand in a standing frame, while the electrical current contracts my
muscles in a pattern they would if I was standing voluntarily. The idea or the hope is that the electrical
current will excite the nervous system and lead to the return of function or
sensation by causing the signals to cross over the injured area of the spinal
cord or to create a new pathway. So far
the gains have been minimal, with them only coming in some increased sensation,
better and stronger muscle contractions from the NMES, as well as more sweating
below my injury level. While some gains
are better than none, it is not the type of gains I was hoping for but maybe
those will still come.
In addition to this treatment, I came here with the hopes to
possibly get involved in some of the research going on. Some of the most promising research is here in
KY. They have been implanting people with chronic spinal cord injuries with a
neurostimulator that was designed to help people with low back pain. They have put the device in the lower spine
and the electrical current it produces excites the nervous system and has
resulted in people that were injured years ago being able to stand, move
muscles voluntarily, and even get the return of some of the body functions that
people can lose with SCI. The first
patient they put this in was able to stand the very first day they turned it
on--the very frustrating part is that this was all the way back in 2009. That is the FDA for you, things move painfully
slow, but sadly here we are eight years later with over 10-15 people implanted and
it still is not FDA approved. Since the device
was already in use for back pain, believe it or not, the process has been
expedited due to being an existing technology.
A big part of this is funding, as well as proving safety and effectiveness. They need to show the cost of the surgery and implant would justify the ROI for
insurers to pay for it. The unfortunate
part for me is that my injury is, in part, at the bottom of the spinal cord,
where, in theory, it may be harder to fix. I do not meet the current inclusion/exclusion
requirements to be a part of the current research. That is not to say that eventually I will
not be able to get it and benefit from it but just not right now. When they are dealing with limited funding
and trying to demonstrate effectiveness, they have to be strict about the
patients they take. I cannot lie that
this is not in many ways, maddening as I have met several participants and even
seen several of them stand or take steps.
I am trying to look at the positive as sometimes it is better to wait
for a second or third version as it is often they will have overcome issues or designed an improved
version. I know the group here and few
others around the country or world are working on improved implants.This is the main research effort that my foundation is
supporting right now, as I see it as the most tangible and realistic treatment
to benefit people soon.
Speaking of my
foundation, we are doing the 8th annual Hope To Walk golf event on
May 22nd at Devils Ridge!
We
are switching it up a bit with all the money collected at the event. This year, the auction items will benefit the foundation and not my own recovery
efforts. My plan was to eventually make
it 100% about the foundation but after discussing things with Dr. Harkema, the lead behind the study in KY, she
wanted me to make sure that I continue to take care of myself and keep my body
ready to benefit as much as possible when my time comes to benefit from the
implant. So while I continue to be
fortunate to have the support, I am going to try to do all I can to stay ready. In fact, the initial plan was to be here for
a few months to use the NMES system with non-FDA approved settings and as soon
possible buy one for home use.
Unfortunately, as it seems with everything, the FDA it is taking much
longer than we expected and the price tag on this device is only about $17K!
When it is released, we will try to have insurance to cover it or at least help with it, but that can be hit or miss.
Lastly, as of two weeks ago, I started working for Dr.
Harkema’s group, which is located on the 15th floor and is called
the Kentucky Spinal Cord Injury Research Center (KSIRC). The plan is to move me around a bit but currently I am
working in the financial department but will also be involved in
fundraising. This is a good thing as it
gives me income, has me around researchers to continue to advocate for
including my type of injury and will be good for my resume. I will be working 30-35 hrs a week and they
are being amazingly accommodating and allowing me to work around all my
workouts or treatments. I can try to
work most of my hours anywhere between 7 am – 7 pm. This means for some long days but I enjoy
being busy.
I am looking forward to coming to Raleigh in May and hope to
see a lot of people that week and at The Hope To Walk golf event!
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