Archive for November, 2008
The stemcells arrived late wednesday night, around 8pm. I was wheeled up again in the elevator with the usual bunch of chinese trying to look nonchalant with someone lying in bed next to them. When we got to the ninth floor, Anthony who was ahead of me was being wheeled out and I was next. Dr. Tony was doing the spinal that evening. They injected the usual amount of valium and the local anaesthesia in the back. I did not go as deeply unconscious as I did the first time. I thought “holy crap” I’m going to feel everything. But then the local and spinal kicked in and when the needle went in I didn’t feel a thing. The whole thing was over in a few minutes, no pain. I thought to myself that having the spinal in the evening would be good because the six hours in bed would overlap with my sleep time. Unfortunately, after five hours I woke at 2am, and the neural growth factor seemed to act as a stimulant which kept me awake for the next five hours. So not much real sleep. The next day, a mild headache, not too bad. Because I was tired, PT session went really bad. Probably due to lack of sleep and the headache. In the evening we all went to a Thanksgiving dinner which Joanne will describe later. The following day I had a good night s sleep and pt was moved up to 9am on friday. I don’t know whether it was the rest or the 3 stemcell treatments, but my dizziness is slowly getting better and the PT session went very well. Happy Thanksgiving to everyone. – Al
First, a little background on a meal in our room in the hospital. Plates in our lap with plastic utensils. Thanksgiving dinner at the 5 star Holiday Inn which has only been open for two months was an experience we will never forget. The menu was sweet corn salad, mixed mushroom salad, green salad, cream of pumpkin soup, Roasted Turkey with stuffing and giblet sauce, Gama Ham(fresh ham), sweet potatoes, cranberry sauce and pumpkin pie (really a torte that was to die for). The manager would stand at the head of the table and ask permission to clear the table for the next course. Merlot wine was also part of this extravaganza. The gal who organized this event suggested we go around the table to say what we are thankful for. I will never forget what Al said – he was thankful that his wife was here with him. He couldn’t imagine being here without her. We all were grateful to have the opportunity for hope where there was none, for meeting extraordinary people and for stepping out of our comfort zones and experience life so different from what we are used to. To top this off, the manager arranged to have the hotel cars take us back to the hospital. Don’t think we didn’t go home with doggie bags. He had so much food left over that he packed us each all the leftovers as well as a beautiful package of cookies. The cost of this sumptuous meal was 555 rmb which translates to approximately $75.00 american money for each couple. -Joanne
P.S. I forgot to mention that two chefs carved the meat at the table and plated our dishes which were served by the manager and staff. How elegant. A little aside, I met a chinese female doctor who is visiting this hospital and I mentioned to her how impressed we were with the chinese people who were so anxious to please us and make us comfortable and help us any way they could. She said “it is our duty”. And they perform their duty so very well.-Joanne
November 28th, 2008
I had an interesting experience after the first spinal injectiion. The next morning I woke up with pain in my hamstrings and glutes thinking it was due to p.t. The following morning I woke about 3 in the morning with severe sciatic nerve pain which convinced me that the pain was not muscular but neurological. Taking 3 advil made the pain go away in about an hour. In talking with another patient, he experienced the same thing after his second spinal. The pain eventually left and hasn’t returned. My next spinal is wednesday. To be continued.-Al
November 24th, 2008
Friday, November 21 finally arrived and they promptly took him out of our room on his hospital bed with an IV and took him to surgery at 2:50 p.m. He was back in our room at 3:20 p.m. It took 30 minutes for the whole procedure. He was very groggy from the valium and had to lay flat for six hours. He slept soundly (snoring the whole time) for the six hours. I ordered a pizza which was delivered at 9pm. which we both ate very quickly. I finished my fourth book during this time and could hardly keep my eyes open. I want to mention that when Al was brought back to the room very groggy, I asked him if he wanted anything and he said “a kiss”, which I immediately complied with.-Joanne
Yesterday was a full day for me, a cadre of doctors stopped by to do the usual evaluation of Ataxia. Then a videographer interviewed me at length as well as making a video of the whole process. Apparently I am a good “before” candidate. On tuesday he will return to film my acupuncture, p.t. and electrowave therapy. He will contact us in the states for the “after” reesults.
The spinal stemcell infusion procedure started with a saline IV to keep the body hydrated through the whole process. Frankly the worst part was the ride up in the elevator. We squeezed a few Chinese against the wall since the bed filled the whole elevator. When I got to the stemcell treatment room, I was surprised to see a female doctor since most of the doctors are male. They injected a dose of valium into the IV which burned somewhat at first. Then I became groggy but remained awake through the whole procedure. The last thing I remember was the doctor saying “we’re done now, its finished”. The first three hours was a piece of cake. I was still under the valium. The last three hours seemed to go rather slowly. We had cold pizza at 9pm which reminded me what the crap we eat in the US. compared to my favorite dish here which is vegetable fried rice with tofu. The next day, no pain, no headache. Some slight bleeding from the puncture but nothing more than that.
We did hear some potential news this morning. A patient who left sunday who apparently had minimal response to the treatment and was discouraged, Emailed someone here saying his speech has improved and they are thinking of coming back here in 6 months. -Al
November 22nd, 2008
Another day in the big house. The screws are keeping the inmates quiet by threatening to hose us down. I’m scheduled for an IV this afternoon and they are already two hours late. The stemcells haven’t arrived yet. I asked the Doctor if I receive the Chinese stemcells, will I be able to speak Chinese. I’ve met a lot of people with similar conditions and hope to keep in contact with them in the future. Thanks for your kind words in the comments. Best wishes, Al
November 17th, 2008
It’s a beautiful, sunny sunday so eight of us (3 patients, 3 caregivers, and two aides rented a van for the day. The driver took us along the beautiful shoreline. We had lunch(really dinner) at Pasta Fresca da Salvatore. The chef is right from Italy but spoke english and cooked for us to order along with his wonderful tales of being a Doctor and soccer player. He met a chinese woman and that is how he ended up here. He was delightful. Then we drove to the site where the sailing olympics took place. Took lots of pictures. It was so good to get away from the hospital for all of us. Tomorrow starts an intense schedule of acupuncture, electrowave therapy, pt and an IV treatment which shows if Al is allergic to the stemcells. If not, his first spinal treatment is on friday. We can’t wait. If we thought we would be on our own here, we were so mistaken. We are a close, supportive family taking care of each other. More tomorrow.
November 16th, 2008
We arrived safely and in the good hands of Korean Air. They provided a wheelchair and escort at every stop and delivered us to our next gate. They also handled luggage, security, etc. The food on the plane was excellent as was the service. A hospital representative met us at the airport and took us to our new home for a month. It was a very long trip. We ordered dinner which never arrived so we had a piece of cheese and went to sleep. Friday Al had his first acupuncture session, electrode therapy and physical therapy. We met a lot of patients who are all very helpful and full of information we need. So long for now.
November 14th, 2008
The days until we go to China are drawing to a close..only four to go. Both Joanne and I can’t wait. After hearing three neurologists say there are no treatment options for Ataxia, we have hope that the stem cell treatments will “roll the clock back”as several people have said who have gone through the program.
As usual Joanne is packing enough stuff for a six month safari on “Survivor China”. I’m trying to go with one carry-on. No doubt the right amount is somewhere in between.
November 7th, 2008
