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!!