Saturday, August 29, 2015

August Update

It has been a pretty busy last couple of months, starting in late June with a trip to Miami to have my final evaluation to be in a trial at The Miami Project for their first chronic injury trial. I try to stay on top of research, which lead me to read about it and reach out to them to see if I qualified. I was excited to make it through some early qualification forms and pass a couple of initial phone interviews but ultimately they needed an MRI to so see my actual injury site and if it met the size criteria that they had set with the FDA.

An MRI is usually not done after having a spinal cord injury, which is frustrating since it can be helpful to learn about your injury and a requirement when pursuing new treatment trials. This is not done because insurance does not want to pay for it and does not deem it as medically necessary, since it is a pretty expensive imaging technique. So I started calling around pricing MRI’s and was getting most quotes between $1K-2K!  Once I relayed this to Miami, we decided that it might just be best to come down and let them do it at no cost. Unfortunately I would be responsible to pay for travel and accommodations but figured it would almost be a wash by not having to pay for the MRI.

I knew going in that the likelihood of me qualifying was minimal, especially after hearing it could not be bigger than 3 centimeters. Since I would not know unless I tried and that having an MRI would likely be required for any other trial I wanted to try to get into, I decided to make the trip. My father and I decided to make the long drive down to Miami, stopping in Jacksonville, which is about halfway, on both the way down and the way back.  It was a long drive!

The trial I was trying to get into consisted of injecting Schwann Cells into the injury site, along with some exercising and monitoring for a total of 3-4 years. This would be an FDA Phase I trial, which means that it is mostly about safety and while they do monitor and look for functional improvements it is not until phase II and III where they look to optimize the dosage and methods of physical therapy used in the treatment. Since the Schwann cells actually come from my own body, the risks would be limited and since these trials move painfully slow, I decided it was worth trying to get into phase I.
After meeting the research team and discussing a few things, I was taken to have my MRI, which was not the most enjoyable experience. They put me in a tight tube and I was in it for about an hour. I have no idea how they fit some people inside it, since even for me it was a real tight squeeze. It also got hot and uncomfortable in there so I just closed my eyes and dealt with it the best I could.
The next morning we found out that my injury site was a bit over 4 cm, which was too big for the trial. While this was disappointing it was also expected and finding people with thoracic injures like mine that meet the requirements is not easy. Most thoracic injuries come from high impact injuries from things like an auto accidents so finding an injury that small is not common. In fact, one of the research doctors in Miami likened it to searching for a Lithuanian short stop in MLB that bats left and throws right, in other words, there might be one?  Why the FDA would choose to set an inclusion criteria that is so hard to meet is hard to understand. While I know that they seek to strike a balance between safety and progress, I feel that they tend to go a little too conservative, especially for spinal cord injuries, which do not have any proven effective treatments. I have met several people in research that feel the same way.

As disappointing as this was, I knew I had to give it a shot. I was glad to not have much time to dwell on it, since I finally had to be in Louisville at Frazier Rehab for most of July. I left on July 5th with my mother and made the drive to Louisville. What was supposed to be a 7 hour drive turned into a 10, due to July 4th weekend traffic and construction delays. Since I was running behind, I decided to call the extended stay I was scheduled to stay at and let them know I was running late, to which they said was not a problem but when we arrived they gave my room away and the wheelchair would not fit into the bathrooms of the rooms that they had left. So I had to scramble at 9pm and find a place to stay the night and worry about it after my first appointment in the morning.

After my appointment I hit the phone and drove around till I finally found a place just 6 miles from Frazier and for only $39.99 a night. I think I got the manager to take some pity on me and it was not the nicest hotel in the world but not bad. My mother flew back after the first week and I stayed for another 3 weeks for treatment. I had been waiting to go to Louisville for about 15 months but things got delayed far longer than I ever could have imagined. I was there to work with Dr. Susan Harkema, who is behind the implant trial that has been in the news recently. This is one of the most promising things going on in SCI research and something I have been keeping an eye on for a couple of years, which lead me to reach out to her.

If you watched the videos or read the article it is an implant that has allowed people paralyzed from the waist down to be able to stand as well as gain back voluntary movement and significant improvement to some of the body functions impaired by SCI injuries. I have said this before but part of my injury is at the bottom of the cord where it branches out from the long and straight portion, which starts at your brain. I never would have thought this but apparently fixing or repairing a low injury like mine, is much more complex and complicated than a higher injury. So right now the implant is not an option for me, which as you can imagine is pretty frustrating. While I do not have some of the body issues that higher injuries like the ones who have had the implant might have, I continue to be limited by my level of injury when it comes to the trials or potential treatment I seek.
The good news is that they want me to come back for 6 months or so in mid-January to use a prototype device that attempts to excite my nerves and the cord itself. I will be the first to use this device and Dr. Harkema believes that this could lead back to regaining some function, which is what I have been trying to do. I was using a similar device the few weeks I was there and was getting a good response but we need more time and more power to have a better idea of how it will benefit me and others. The hope is that I will know by the end of my next stay if it the treatment will lead to gains and if it something I should try to secure the funds to purchase to continue using at home.

So I am excited about my return there in January and until then I will keep do my home workout routines, working on my foundation, doing some part-time work, and working toward my Masters in Health Care Administration.

Friday, June 12, 2015

Long Overdue Update

I have not updated the blog since March but I have had a lot going on! I am still doing the grad school thing.  It is a lot of reading and writing, but to my surprise I have actually have yet to get anything below an A in class. I have never been a straight A student, but I think the combination of being older, more mature as well as actually having a true interest in most of the things I am learning about, that helps me to do well. I am in summer school right now and at the end of the summer, I will officially be half way through the program.

The 6th Annual Hope to Walk golf fundraiser was held on May 4th and it was another success. It is always a humbling experience for me and hard to believe that this was the sixth one of these that has been done. I am a little behind on the thank you cards and emails I usually send out but cannot thank the volunteers, sponsors, participants, organizers and donors enough. I also want to thank Dave McGee for taking this on once again this year and he always does an amazing job.
I am still trying to do some things with The Walk On Foundation and actually exploring expanding our mission from not only funding cure research but possibly trying to raise money to open up my own neurological recovery center in Raleigh. I would love to get back to Raleigh and think it would do well there since there is nothing in the area. It would be great since it would help people with spinal cord injuries, MS, strokes, brain injuries, and other neurological injuries or conditions. It is going to take a lot of hard work and some lucky breaks to make it happen as the amount I have been told to get it up and going is $250,000. Admittedly, that figure a pretty big and scary number but not impossible.

FINALLY have a date to go Louisville, KY for the therapy I have been trying to do for over a year at Frazier and I am excited about it!  I will just be there for the month of July with plans to continue the therapy on my own and back at home. I am not sure how it will all work out but I but from what I understand, I will be standing for 60 mins with newly FDA approved electrical current through my lower body, followed by 30 mins of over ground walking, that I believe is also done with the electrical stimulation. I believe I am supposed to do this twice a day for 5 days a week while I am in Louisville. I am really looking forward to trying something new and modifying my routine on the therapy or rehab front.

I also am actually headed to Miami in a couple of weeks to the The Miami Project for my final evaluation for a trial I applied to be in. It took several emails and phone interviews to get to this point and this first step is going down for some testing and an MRI to see if I qualify. If I get in, I would have the opportunity to move to Miami in August and have a surgery to inject Schwann cells into my spinal cord followed by several months of rehab and monitoring. It would be a big commitment with an initial stay of a year in Miami, with follow up visits for four years. We will see what happens, it is not like an interview to get in, it is more a black and white qualify or don’t thing. They will look closely at my injury with the MRI and see if it fits the inclusion criteria. I will know about that trial by the end of the month and before leaving for Louisville. I definitely will have to share what I learn in Miami and Louisville soon.

Thanks, as always, for the continued support!!

Tuesday, March 17, 2015

2015 Hope to Walk Golf Tournament!

Hope everyone’s 2015 is off to a good start.  

I am staying pretty busy with school, my workouts and working on some foundation stuff.

I am taking three classes accelerated classes this semester and just finished my first seven week class about a week ago.  I ended up getting a low A, which I was pretty happy with, since the class was Health Care Law and reading about laws and tons of court cases is not the easiest reading to understand.  I am thinking and hoping that should be one of the tougher classes, but only time will tell.

I do have some good news!

I am FINALLY getting down to figuring out a date to FINALLY go to Louisville, Kentucky.  It has been almost a year since I first visited the Frazier Rehab Institute and still shocked it has taken this long for things to come together.  We are not quite there yet but discussing dates is definitely progress. It is looking like mid to late May or June, but we still have to firm up the date and figure out where I will stay during my visit.

You also may have heard but it has been decided that the 6th Annual Hope To Walk Golf Event will be on Monday, May 4th!  It is hard to believe that this is the sixth one and I never imagined we would still be going strong with this event. I definitely do not take this event for granted and know how lucky I am to have such an amazing event with amazing support. I hope we can make this one the best one yet.

I am also looking into making some changes with The Walk On Foundation. I have been thinking about changing the focus of its mission, which has lead me to doing some research into what it would take to open up my own neurological recovery workout facility in Raleigh.  A project like this is definitely more a labor of love then a money maker but I think it would do well since there is nothing like it in Raleigh and having Race To Walk is one of the reasons I have continued to live in Charlotte. With the continuing growing population and with all the health organizations in and near Raleigh, I think a facility like this is a much needed and welcomed addition. It has the potential to help people with all types of neurological issues, not just spinal cord injuries, but also those suffering with MS, stroke, brain injuries, among many others.  While I think it would do well in Raleigh, it is going to be quite a challenge to make it happen, beginning with the need for around $200K just to get things up and running.  I really like the idea of being involved with something that there is such a need for and that could help so many people dealing with the daily obstacles I face.  If you have any idea or suggestions for raising this kind of money please let me know! I hope I can make this happen and continue to use the momentum and support from the Hope To Walk golf events to become an annual event to help support opening a facility like this in the near future.

Please be on the lookout for progress with this and ways you can help as we try to make this a reality. 

I look forward to seeing everyone in Raleigh in early May!