Feeling at home in a body coming back to life

Thursday, April 7, 2005

I arrived home March 24. My family and some media met me at the airport in Kansas City. Today is April 5. I knew the results from the OEG (olfactory ensheathing glia) cell transplant I received in China would be much more effective after I arrived home.

I have a device implanted in my abdomen called a Baclofen pump. It gives a continuous infusion of Baclofen, a muscle relaxant that, when injected directly into the spinal canal, can alleviate muscle spasms and pain.

I have had bad muscle spasms in the lower part of my body since the injury. I knew that I had to get home and have the pump turned down to be able to notice the real effects of the surgery. The muscle relaxant hinders the strength I am regaining in my abdomen and legs. Since I returned home, I have had it turned down twice, and the spasms have not taken over like they would have before.

This is a positive improvement, which can only be attributed to the cell transplant. There is a list of improvements that have occurred since the surgery: my breathing and lung function is 20 percent better; I can now move muscles in my legs and abdomen that I could not move before; I have started to sweat below the area of my injury; I can move my legs from side to side with no assistance and almost do a sit-up by myself; and my hamstrings, quadriceps, knee flexors, hip flexors, abductors, and inductors are getting stronger daily.

I had my pump turned down halfway on Tuesday and that evening could feel a strange tingling sensation in my toes and was able to move them and flex my ankle a little. I can feel my bowels and internal organs that I could not feel before, and they are working better. I believe that when I am able to turn the pump off completely, my muscle strength and sensation will continue to improve.

The doctors in China told me that the results would continue to improve over 12 to 18 months because it takes time for the axons in the spinal cord to bridge the damaged area and make new connections. I feel as though I got my money's worth from the spinal cord surgery. I am hoping with intensive therapy that within a year I may be able to walk again. It will take a lot of work and therapy.

I have been impatient in the past and want results right now, but you have to figure that an infant has its spinal cord intact and still takes a year before it can walk, so I have decided to look at it with that approach. It is difficult trying to move muscles that have not been used for so long. In therapy you literally have to focus on the muscles you are trying to move and concentrate with all your might to get them to move.

Another thing that is difficult is thinking about moving them while you do your everyday tasks. While transferring or moving from one location to another, I usually pick up my legs and swing them where I want them to go. Now I have to make a conscious effort to focus on making my limbs help with the motion to get used to moving them again. I have faith it will happen and the determination to do so.

The ALS patients in China were especially astonishing. The OEG cells injected into their brains stops the illness dead in its tracks. I saw two people who could not walk before moving down the hallways with some assistance. Patients who could not talk clearly were speaking better and improving.

If anyone would like more information on the surgery and getting help, I have listed the hospital's contact person in the United States who schedules the procedures and can give you information. Before I left, the waiting list was until September. After I arrived, it was the first of January 2006. Now because of the media coverage I understand that they are booked up through 2007. With all this publicity and the demand for the procedure, I hope other doctors there will start performing the surgery and that it can be expanded to other hospitals and facilities.

I had my doubts about this surgery until I found out that it had been proven to work in animals and I would be receiving the same therapy. All I can say is the results speak for themselves.

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