What Is Happening: An Update

Greetings blog supporters! I hope everyone is enjoying their early spring. Things are progressing well and many of you have been spreading the word and even donated. I don't have words to express my gratitude. We will be posting a progress report on how close we are to our goal very soon as well as a PayPal button on this page to simplify the donation process. So be sure to watch for it. Finally, be sure to keep an eye out for the release of some pretty amazing t-shirts and hoodies featuring original art by our good friend Shawn Hawking, check him out at- www.shockingartwork.com.

Art by Shawn Hocking
The golf tournament is fast approaching and is set for June 4th. It is first-come, first-served so if you are planning on signing up please do so right away. If you don't play golf, but would like to attend the dinner please message Shelley Bartlett directly at- bartshelley@optonline.net.

Finally, and this important... many of you who have spread the blog around to those you know, both those readers and you yourselves have written or connected with us with questions regarding the negative press that came out last year concerning Dr. Zannos Grekos. Please know that we are well aware and educated regarding the controversy. Dr. Grekos has addressed all our questions openly and and honestly. We fully support the work he is doing and encourage those of you desiring more information to watch our video blog Interview #1 with Dr. Grekos. Also, Dr. Grekos will be joining us as our guest speaker at the dinner immediately following the golf tournament. We strongly encourage you to come hear what he has to share.

And now back to our regularly scheduled program...

THE ROAD AHEAD

It dawned on me the other day that I have shared a lot about spinal cord injury itself and my personal experiences with it, but I have not really spent any time explaining what the coming treatment will entail and how all of this fits together moving forward. I think this will be an exciting posting and a little breather from my often scathing rants. That was said with a smile.

Just to recap, currently I am diagnosed as an incomplete spinal cord injury at the C5-C6 level which are the vertebrae just between my Adam's Apple and my shoulders. I have what is known as "deep sensation". This means I can't feel the surface of my skin, but I do sense pain and pressure at the skeletal level. My injury will be exactly 19 years-old on April 26th of this year. I have not walked since the day I was injured. I use a wheelchair that houses a sophisticated closed loop computer system that controls two high-torque motors whose axles relay electrical impulses based on how hard I push. It senses whether I am pushing up hill or down and spins faster or slower to assist me. It affords me the ability to get anywhere like a powered chair and get the exercise of a manual chair. I require assistance with most tasks including dressing, bathing, cooking, traveling, using the restroom and more. I have not been as responsible with physical therapy as I should have been, but I live an active life and I am careful about what I eat. Because of sitting so long I have developed arthritis in both hip joints and the T-scores in my pelvic and femur bones are very low indicating bone loss and osteoporosis. This is a pretty clear picture of my physical situation going into stem cell treatment.

Many of you have asked "When are you scheduled for treatment?" I will schedule treatment when we have raised the money to cover the cost of the treatment. This why we are currently holding several fundraisers and encouraging people to donate. Insurance does not cover these kinds of treatments because they are considered experimental and are performed outside of the country. This is not uncommon and many Americans are traveling abroad for procedures. Medical tourism is a rapidly growing industry. Germany, Portugal, Belgium, Israel, Dubai, China, Korea, Singapore, Thailand and Australia are all performing stem cell treatment. I will be traveling to Santo Domingo, Dominican Republic because Dr. Grekos and his team are working with a state-of-the-art clinic there. They have chosen that location because of its proximity and ease of access for American patients. I am currently "covered by Medicaid", but the real truth is that Medicaid is bleeding money and has essentially passed off its cases to private insurance companies who charge less and in turn handle the individual cases while the government foots a cheaper bill, it's all outsourced. In order to receive treatment I will need to undergo a CT Scan of arterial blood flow to my injury site. Neither my family doctor nor my neurologist can get it approved by the insurance company because it is for an experimental procedure. If I try to pay for the scan out-of-pocket the insurance company can potentially revoke my entire coverage plan because in their view if I can afford the scan then why should they be paying for anything else. Welcome to bureaucracy. So right now my current goal is to raise the money for the first treatment and physical therapy.

The work that is truly the key to the overall success of the entire process is physical therapy. I will be starting therapy pre-treatment. Because this is also specialized insurance will not be covering this either. The cost is anywhere from $85 - $250 per session and each session averages between 1 - 3 hours long. The reason the therapy is specialized is because not all facilities are specifically geared toward spinal cord injury. By this I mean the therapists, trainers and doctors are all trained and focused on working with problems related to the central nervous system. These high-tech facilities utilize the Dardzinski Method. This training is a rather lengthy and complex system of weight-bearing and vigorous exercise and can be researched in-depth here. The nearest center is 70 miles away in north New Jersey. I am scheduled for my primary evaluation on Saturday, April 6th. Upon evaluation, which is a 2 hour process, the trainers there will develop an exercise program tailored specifically for me and train my brother Ethan to assist me at home. From that point I will exercise daily at home and at a local gym and drive to the center in New Jersey once a week or every other week for intensive work. I will be posting photos and videos of this process.

Once the funds are raised, my CT Scan is done and I'm solidly established in my therapy regimen we will schedule the treatment with Dr Grekos and his team. This all happens rather quickly at this point. My family and I will fly to the Dominican Republic. On the day I arrive we check into our hotel, settle in and rest. Early the next morning I will be taken to the clinic where I will go under anesthesia as marrow is extracted from my hip in a simple procedure. I then go back to the hotel where I rest that afternoon, evening and following day while the marrow is processed in the lab into stem cells. On the fourth morning I return to the clinic where I go under anesthesia again. Dr. Grekos will have a tiny incision made in my right thigh. Then a long, tiny catheter will be inserted into my main artery and followed all the way up to my neck where the fluid containing my own stem cells will be injected into my spinal column via the veins supplying blood to my spinal cord. This whole process takes the better part of an hour. Then it's back to the hotel for a night of rest and the flight home the next morning. The whole process is five days.

When I return home I will jump into an even more intense therapy schedule. This could potentially, and more than likely mean a stay at a nearby hotel and a few weeks of daily workouts at the the Push To Walk Center in New Jersey. After ninety days my progress will be assessed and if the progress is significant and the money is available I will undergo a second stem cell treatment. We are also exploring the possibility of traveling to California and Florida for therapy at Project Walk Orlando and C.O.R.E. in Northridge, CA.

From this point on it's hard work. I am given the task of continuous exercise and implementing whatever abilities I regain into everyday life. The treatments for spinal cord injury are only going to become better, more precise and more readily available so before it's all said and done I may have several different types of treatment until I am pleased with the outcome. I am looking forward to being able to swim again and utilizing other forms of exercise I already enjoy but can't currently participate in. My current goal is to reach a level of independence where I can travel alone or with the aide of only one other person, but it takes one step at a time.

Thank you all for your amazing love and thanks for reading...

Comments

  1. It never ceases to amaze me what insurance companies will not do. I'm trying to figure out at this point what they actually do accomplish. I'm pulling for you all the way Cuz!

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