Gaining strength in body and soul

BEIJING -- It has been five days since my surgery, when the cells were transplanted into my spinal cord. Dr. Huang noticed some muscle tone in my quadriceps and hamstrings three days after the surgery.

They have been taking it slower than I like here. I guess they want to make sure my back is completely healed before doing some more strenuous exercise.

I already pulled out two stitches because I did not like laying in bed, so I pushed myself up and down the hallway for some exercise and to relieve some of the pain in my arms.

I believe one of the largest barriers a patient faces here is the language barrier. It would be better if the doctors and nurses spoke better and fluent English, but they are trying to learn.

We are getting more spinal cord patients here now. The numbers are still higher for ALS, but we now have about five spinal cord patients, and the ward is completely full.

One thing I have noticed and would like to make very clear to those at home: I hope no one is expecting me to walk off the airplane when I return to Kansas City. I have seen some ALS patients get recovery quickly and some very slowly. Some of them seem to be depressed because their results are not as quick or as good as they would like. People are different and their recovery and results are directly related to how bad they are when they come in and how serious the damage is to their spinal cords.

Obviously a person with an incomplete spinal cord injury is going to recover more quickly and regain more control than someone who has more extensive damage. There are many people out there who may expect an instant cure or magic bullet, but it just doesn't happen that way. Each individual's results will be directly related to how much effort is put into recovery and how badly it's wanted.

I have been in a chair for 10 years and do not expect to walk overnight or next week or maybe not even in the next several months. I expect most of my recovery to come when I get back to Kansas City.

One of the biggest reasons I believe most of my recovery will come when I return home is because of a device I have implanted in my abdomen. It is a Baclofen pump made by a company called Medtronic. It continuously infuses a drug called Baclofen directly into my spinal cord to control the muscle spasms I had in my abdomen and legs. They were very intense.

It is the very thing now that is inhibiting my recovery because it makes the muscles weak and flaccid. I spoke with my doctor to see if he could get his hands on a programmer to turn it down, but they do not have this technology in this country. I will have to see my anesthesiologist when I get home and have it turned down slowly until we can eventually turn it off. Then I can receive the full benefit of my surgery.

For days following my surgery I attributed my pain in my back to the surgery and the pain in my arms and chest to the IVs they had attached to me and other factors. I found out today that the places where I am having the throbbing pain in my arms and chest are at the level of the spinal cord where they injected the cells, and the pain is most likely a result of my body becoming adjusted to the new cells and the adaptations occurring in my body. They should subside over time.

I will not let things get me down. Nor will I give up on my efforts to walk again. It is not a matter of if but when. It will not happen overnight, but it will happen. If it does not happen as a result of this procedure, there will be another down the road that will. I feel positive about the changes that are occurring in my body at this time and I feel they are for the better. The day I give up they may as well put me in a box and cover it up because that is no way to live. What is life without hope? What is hope without faith?

Life is what you make of it. It is not so important what hand is dealt to you as what you do with it. If you stay in the game long enough, sooner or later you are bound to get a winning hand. When it does happen, just be thankful and make the best of it. I have a wonderful and supportive family and three great kids to be thankful for. That alone makes everything worthwhile.