Friday, October 13, 2017

So it has been quite a while since my last blog update.  It is hard to believe but I have been in Louisville, KY for over a year.  When I came here at the end of last July, I really did not know how long I would be here and it is actually a little hard to believe that at the end of October, I will have been here for 15 months.  I do not dislike it at all, but I do miss many things in NC.  One of the things that will make things a little more interesting here is that my friend and former teammate, Archie Miller, took the head coach job at Indiana University.  I am excited for him as it is considered one of the biggest jobs in the country and it is only 91 miles from my door.  I am confident that he will be successful at it.  I went to a lot of games while he was at Dayton and IU is about an hour closer.  I am still trying to wrap my head around wearing IU gear to support him but I am sure I will come around.
I will be honest that at times I am really unsure about continuing to be here and at times even wonder if down the line I may even regret it.  If I knew staying here would get me back some of all that I lost in 3-5 years, I would feel a lot better about things. At the same time, if I knew I would be in the exact same shape in 3-5 years as I am now, I would think differently about what I am doing. It is very difficult not knowing at all what the future holds.
On the one hand, I am at one of the few locations in the country where there is some promising research taking place.  As I have mentioned before, they have been putting an implant inside patients that excites the nervous system and allows people to be able to stand up, gain back or improve upon lost body functions, move muscles on command and even take steps.  Sounds pretty amazing right? However, I also can tell you that they first put this on a patient in 2009 and it is largely based off of technology that has been around since the 1980s. It is 2017 and it is beyond frustrating that something which could possibly help me and significantly change the lives of a lot of people is still not available, even though I am told that they have positive results in 10 people.  I am still trying to make sense of it all.  I have been told that part of my frustration is that I am moving from more of a corporate or business background or way of thinking into academia.  The rules and regulations, as well as the steps taken to validate research can be frustrating and hard to understand.
I know that a lot of it is the FDA and the insane amount of regulations they place on things.  While I understand the fear and challenges of working with or on human subjects, if you gave me one day, I promise you that I could sign up 100s of people with spinal cord injuries that would assume any "risk" and wave liability.  In some ways, it is almost like the FDA chooses to decide what they consider the quality of life and what QOL is not worth risking?  Sure, you can say someone with an injury like mine can live a meaningful and purposeful life but what about someone that has no use of their hands or cannot breathe without a machine?  All I know is that I am frustrated as well as many people I have met along the way. We are tired of waiting!
My current routine over the last few months has been pretty much the same.  I have been working about 30 hours a week and working out or receiving treatment every day.  I am pretty much in more of a holding pattern than anything else.  I am trying to keep my body and muscles in the best shape I can to be ready for these treatments when they finally do become available.  I spend a lot of time and money doing just that and try to keep the faith that one day I will look back and say it was worth it.

I think this post may come off a little more negative than my others but some of that is just the reality of things.  I often remind myself of the many ways that I am fortunate.  I am able to drive, work and live by myself and almost never need help with anything.  Of course I cannot forget that I have also been allowed to pursue opportunities to get better with the support of some generous friends and family.  I am also in many ways in a good spot here in Louisville.  In addition to Archie being closer, I also work a job that allows me to be around people and part of the team working to make treatments available to help those with spinal cord injuries.  It is something that is very convenient for me as I live 0.3 miles away from the building I work out at on the 9th floor and go to work on the 15th.  I also cannot ask for a group to be more flexible or understanding with my appointments or treatments and even my desires to make trips back to NC.
Finally, I wanted to let you know that my sister is offering to donate $10 to The Walk On Foundation now through the end of this month for anyone who joins The Produce Box using her referral link (which also gets you $10 off your first order).  She's been a member for years & just started working for them as a Neighborhood Coordinator in Raleigh.  It's doorstep weekly deliveries to most addresses in NC consisting of local, in season produce along with locally produced artisan products such as cheeses, baked goods, honey, nuts, along with higher quality meats & seafood.  All you have to do is sign up here for $10 off your first order along with a $10 donation to my foundation.  Thanks for considering! 

Tuesday, April 11, 2017

2017 Update

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!