Our needs have changed so much due to life circumstances both good and bad. Right now I am respectfully asking that any donations go to other more pressing causes. Here is a quick update on my progress:
Andy's Treatment/Alternative Therapy - Frankly, I have not been doing great but I am making progress in some areas. I am now walking without any assistive device and can jog for short periods gaining strength each month. I have been working with biofeedback therapy and I have completed eliminated pain medication from my treatment. My pain is still very present and real but I have learned how to deal with it and control it with biofeedback therapy and meditation. I have bad days and really bad days so I keep redefining what a bad day is so that it is an ok day. The Epilepsy that began in 2012 is behaving for the moment and no major seizures have been present. The next steps will be to go through Neurocognitive Rehabilitation to try and establish my ability to use my left brain again for higher tasks like before. Right now everything takes time and is very difficult when it comes to this area at times. I hope this is a positive turn in this disease and not just a breather before another downturn. Controlling stress and anxiety will be key in keeping this disease from progressing faster again. I am very thankful for what progress I have been given!
Doctors at the NIH believe that I have something else besides NeuroBehcet's going on that doesn't fit the diagnosis. Whatever it is could be serious it is just too early to tell. I have been just trying to cover symptomatic and palliative care needs. But this is like giving a plant water without sunlight. I have chosen to use more natural and alternative methods to fight this disease for now. Western medicine has done some good but has failed me greatly in many areas and actually made things worse in others. This is a personal choice and not a recommendation for others going through this same disease.
Scoliosis Surgery - I completed my scoliosis surgery by Dr. Oheneba Boachie-Adjei at the Hospital for Special Surgeries in New York City on August 30, 2011. The surgeon believes that the surgery so far has been a success in not only stopping the scoliosis progression but also potentially saving his life by rebuilding vertebrae that were about to collapse. There is still rehabilitation that needs to be complete but this big hurdle is mostly complete. I am gaining more and more balanced strength and confidence in my back every day. This is a very positive sign and I am glad that I am making good physical progress in this area. It has been two years since the surgery now so I am spreading my wings so to say and testing my physical abilities more and more. I still have a goal of running a marathon one day with a long laundry list of things.
Donations - I have respectfully requested that all donations at this point go to others in greater need. Sure there are still medical and life expenses to be covered but at this point things are being managed more effectively. Thanks to all that have supported us through this journey and I will update you on any major changes that may occur in this area.