Saturday, October 6, 2012

Fall Update from Brian



My parents & me with Dr. Wise Young
I have not written in a while; I have been pretty busy since I started taking classes online in August. I also have been working about 35 hrs a week with 3-5 hours of therapy a day. Adding school to the mix has made things a little crazy.

I was not sure what to expect with the online experience but it is definitely more work than I thought. It consists of a good bit of reading and I have two projects due every Wednesday, with one group and one individual assignment. I get the feeling that most the people in the class have more experience and are more familiar with the lingo used in the field than I am. I think the biggest surprise is that I have to learn and figure out a lot of things on my own. There are not online lectures but we are given reading assignments and some other files to read but I spend a lot of time searching online for examples and things to read about what we are learning. It is more self-learning than I have ever done but I am sure that is typical of online courses. I can just try to do my best with the time that I have and luckily I have a good partner.

The month of August I was on the road a good bit. I made my first trip back to Kennedy Krieger in Baltimore in about a year and a half. I made the six hour drive into Raleigh and my parents and I rode up to Baltimore for the week. It was another long drive but it was good to spend some time with my folks. I really like the doctors at Kennedy Krieger and I wanted to get back there to meet with them and be reevaluated. The biggest change they noted was that I have gained 35lbs in a year and a half. It is some upper body but mostly my legs muscles from using my stim unit. Also my sensation is getting a little bit better. When I am examined for sensation with my eyes closed I can now tell what leg I am being touched on and I am usually right about the general area. Hopefully that will continue to get better. I was reassured that I have been doing all the right things with my recovery efforts over the last few years. I still do not know where all this effort is going to take me but it is clear I am doing about all I can with what is currently available.

We actually schedule our trip to Baltimore at a time we could get up to New Jersey to meet with Dr. Wise Young at Rutgers. We left Baltimore on Friday around lunchtime to make the three hour ride to Jersey. Dr. Wise Young is one of the best spinal cord injury research doctors in the world. He has been very busy conducting trials in China for the last couple of years, which is where he spends most of his time so we were lucky to get a chance to meet with him. Shortly after I got out of the hospital I was able to get connected to his staff and have spoken to his assistant every few months since. They are planning on conducting trials in New Jersey next year, which I am trying to do all I can to be a part of.

Without getting into it too much there are three phases to have something FDA approved in the USA. Phase 1 is 100% about safety, Phase 2 is still emphasis on safety but they also look at effectiveness and Phase 3 is all about how effective it is and determines whether it is worth doing. They have just finished up the Phase 2 in China and will publish the results in November. Ethically they cannot say much, but I have had discussions and read things that have me expecting some good news. I do not anticipate this to be a home run cure but do believe it to help people regain levels of function. The timing of the trials depend on the fundraising effort to support the study, which is something I am looking to get involved with.

I am about six months into using the stim device which was where we expected the potential for the most changes to occur. Since I am pumping so much current and energy we have had to be very careful and conservative to slowly get to this point. As you can see in the video I have finally gotten to the point where the device helps me contract my muscles strong enough to even move my legs. I am excited to see where this goes in the coming months and will be sure to keep posting.
video