Archive for November, 2006
There have been several changes noted to date.
1) Since my accident, I have required a full 12 hours sleep every night. This means I have had to chose to either give up my evening or my next morning. Sleeping half your time away is not a great way to accomplish a lot. I now find I get by on the normal 7-8 hours.
2) I have been plagued by constant nausea and it is not uncommon for me to throw up on a daily basis with no warning. As a result, I have had no appetite and my weight has dropped dangerously low at times, 85 lbs. The nausea is completely gone and I find myself hungry all the time now. I have finally started to gain some much needed weight.
3) The muscles on my claves and thighs have suffered some severe atrophy. I notice now that my calves have started to resemble and feel normal again. The thighs are just beginning to show some differences so wearing dresses and skirts will once again be an option.
4) I am developing some sensation on the right leg. I have had several flashes of cold down the outside of the leg although none recently. The rest of the leg has a constantly moving pins and needles sensation that changes in intensity, duration and area. It feels almost as if the leg is trying to wake up. I seem to have sensation to pressure in areas but nothing tactile as of yet. I also seem to be sweating behind the knees which I am told is a good sign. I am not positive whether or not I did this before as it is not something I took note of.
5) I have developed some movement in both legs however the left leg seems to have more strength. I noticed, quite by accident, that when I was laying down my legs seemed to want to spread apart. I had no concious ability of how to do this. I am now at the point where I am working my way up to a semi reclining position and can control which leg I move as well as how far I move it. At the moment, I can only move them apart and am not able to move them together, ankle to ankle so to speak. When laying on my side, I am able to pull my knee in the direction of my chin. I initially could only do this sporadically and with intense concentration. I had to have my legs bare as the friction of cloth against cloth created too much drag for me to move the legs at all. My leg accidentally slipped off the side of the bed and I discovered I was able to lift it using mostly my abdominal muscles. I lifted it not only back onto the bed, but up and over the other leg clearing it by a good 3-4 inches. I was in such a state of shock that the only thing I could think to do was grab my leg, throw it off the bed and see if I could successfully repeat the move again, which I did. During this Jon was doing a little video taping and was able to catch the entire thing on tape, now exciting as it was definately a “first” for me.
6) I am developing some bladder control. Although I do not feel the urge to void, I can usually begin the get my urine flowing by thinking about releasing the bladder. Now the big problem here is as I am transfering to the toilet, I often find my bladder starts to release and my pants are not yet off. It is pretty hard to think of something else, after all, that is what I am in the room for. I also seem to have developed some incontinance and am embarassed to find I often awake to find I have wet the bed. I have learned that this is part of the process as the bladder ceases to be constantly spasmed closed and begins to release on its’ own. As long as it is a learning curve and something that will progress I have no problem being like a toddler who is being toilet trained. “Look Mommy, I pee-pee’d in the potty”. 
November 21st, 2006
I am having a lot of difficulty logging on. The wireless connection from my room is sporadic at best and the 3 computers available to us in the computer room are often either busy or too virus laden to use. This entry will cover several days so might be lengthy.
I spent Saturday quietly as instructed after my first stem cell injection. This was frustrating in the sense that Jens kept returning with yet some more shopping bargains and I realized that my time for shopping was very limited. Tomorrow, Sunday was suppose to be a free day and we had planned to go to a real bargain area near the train station. After returning from an early morning breakfast, I learned that I was scheduled for therapy. Normally the Drs have Sunday off but this week for some reason they had decided to take Saturday off instead and work Sunday, go figure!
I had my second stem cell injection on Wednesday and discovered this time round I was not completely out of it like the first time. I was able to tuck in a short nap in order to get through the 4-5 hour requirement of laying flat on the back. I did have a very slight headache on just one side but it really was not too bad.
I have discovered the Chinese people on a whole are courteous but curious. The exception to this rule is elevator ettiquette. They think nothing of “picking, flicking, farting and horking” in public with no embarrasement. They even smoke on the elevators. They are always packed to overload making one feel like you are jammed into a sardine can. When you finally descend to the first floor, normal proceedure would be for everyone to get off before the next round start getting on, not here. One woman pushed her way in managing to effectively block the doorway so no one could either get off or on. She then had the nerve to push the button for her floor whereupon the elevator door swooshed closed and up we went amid the crys of protest from everyone who had not been able to get off. She was completly oblivious to the koas she had created and was content in the knowledge that at least she was getting where she needed to go. No wonder the elevators are always so full and busy.
November 17th, 2006
Another exciting day. I awoke this morning and realized that my calf muscles actually look and feel almost normal. The right one more so that the left one. The accupuncture in my right arm seems to be having some effect as I have much less tingling and numbness now. Pain is still with me overall but it seems more managable.
I met Jon an his father at physio and made plans to join them and a few others for dinner. They are both incredibly nice men who seem very dedicated to this project. He also wants to do some filming for the CBC documentary. In my room this afternoon, while showing him my leg movement, my left leg accidentally slipped off the side of the bed. With cameras rolling, I shocked everyone including myself, when i actually lifted my left leg up and over the right leg, clearing it by a good 3-4 inches. I was in such shock that the only thing I could think to do was throw my leg off the bed again and see if I could successfully repeat the movement. Success again.
At dinner, I discussed with Jon the idea of stepping the treatment program up to include a 6th injection. The next one will be an IV an should help deal with some general issues like pain. We also agreed to do a bone marrow culture of my own stem cells. This will become the 6th injection and will be mixed with the cord blood stem cells. We also discussed the addition of lithium chloride to boost the entire effect.
I am very excited and more than pleased with the results to date.
November 15th, 2006
I was finally able to get my phone cards working today so it was nice to make some calls and get in touch with friends. I am still having a lot of difficulty getting on line most days so everyone was happy to hear from me.
I noticed I am sweating behind my knees now. I am not really sure if this is new or not as I never really thought to check it. I have learned that this is an important sign so though I should document it. I have also noticed that I am hungry all the time now. We went to the local hotel for dinner tonight, had an impressive meal complete with a tea pouring ceremony. After selecting our tea, they set a little wooden box with a baby tea set on it. We had a hostess continually making and pouring the fresh hot tea into tiny thimble size tea cups. It was very interesting to watch and I have decided I want to buy one of these sets to take home. Now the problem will be who will make and pour it for my guests and I at home……..ha ha
I had my second stem cell injection today. I awoke with a very slight headache but nothing compared to what some experience. I also woke up at 10 pm, unlike the first time where I slept for 9 hours.
They are working me pretty hard in physio these days so am very tired at days end. I am on my hands and knees doing push-ups. They want me to try doing it with just one hand. I think they have watched Syvlester Stallone in Rocky do this one too many times and I keep asking my therapist to try doing it himself. They also have me on my knees with one of those large exercise balls in front of me. The idea here is to hold my balance and move the ball slightly. This not only works my lumbar muscles but helps with my overall balance. I have one of these balls at home so will work it into my daily work out when I return.
I also had an MRI this morning and am waiting on the results. Other tests that have been done are an electical stimulation for muscle response as well as euro dynamics. This is designed to see how much the bladder can hold before releasing. Both of these tests will be repeated before I leave to see if there are any changes.
November 15th, 2006
I had my second injection today. I had a slight headache upon waking at 10 pm but nothing major. It went away after a few hours. They have me working pretty hard at physio these days so I am pretty tired by days end. I had an MRI this morning and am waiting on the results to learn whether or not I will have surgery.
November 14th, 2006
I spent the day quietly resting in bed as instructed. I’m feeling fine but no miracles noted.
Sunday I was up early, went out for breakfast then returned to my room to get dressed for my first day of shopping. I was shocked to discover that I had therapy instead. My schedule said it was a free day. I pee’d on the toilet differently that before. I was able to get my bladder to release but not able to completely empty. I also noticed I am sweating behind the knees, don’t know if that is new or not. I am hungry all the time now. We went to the local hotel for dinner and had an impressive meal complete with tea pouring ceremony.
November 11th, 2006
I woke after a restful 8 hours sleep. I feel I should document the fact that the first real change I have noticed so far is that I don’t seem to need my usual 12 hours sleep I have been logging since the accident. I don’t know if this is just a coincidence or if it is a permanent change but I will monitor this. What a blessing it would be to return to the usual 7-8 hours sleep most require as opposed to having to devote half my life to sleeping now.
I was collected early this morning for a euro-dynamics appointment. That basically translates into how much urine can my bladder hold before it lets go with a flood. The appointment went well with the exception of the usual issues of language barriers. I had a difficult time getting them to understand that I do not feel “the urge” to go nor can I control the flow either starting or stopping. The concept of catheterization as required (also known as “in and outs”) seems to be foreign to them.
Today, I will get my first round of stem cells. I was told that was to be at 3 pm so by 4:30, when I was still sitting in my room, I was getting a little anxious. It was not that I was nervous about the whole thing, more so I was a little on edge thinking something had perhaps gone wrong and it would not end up happening after all. They finally collected me at 5 pm, whew. I learned that the “time for treatment” means more that it will occur sometime after that. The patients are sort of lined up and treated one after the other as opposed to having a specific appointment. One more learning curve I have gone down. The trip down the hall to the surgery was an adventure in it’s self. Could they bump and bang into any more walls and doors if they tried? The workers here are all very kind and considerate but I don’t think they have any idea how the jostling to and fro sends waves of pain shooting down my back. I was then left to sit out in the hall with the instructions “Please wait here”. OK, let’s see. I’m paralized from the waist down, laying on a gurney with no wheelchair in sight. Where did they thing I was going to go?
The nurse in surgery inserted an IV of a valium type substance. I was told to expect a “prick” like sensation. It was more like a searing hot poker being driven up my arm. After that, I was out cold until 3 am. I woke up feeling great, no sign of the headache some patients have spoken of. My hand, where the IV was inserted, is horribly swollen and bruised. I do plan on mentioning this to someone as I feel that this could easily have been managed by just injecting slower. Just my humble opinion though.
November 10th, 2006
Another great day in China. Began the morning with an examination by Dr Zhang. She confirmed that my sphincter muscle is working, what great news. Does that make me a genuine A-hole? This means that I should be able to get my bowl control back, Yahoo. Not sure if this is the kind of news I want to share with the world but what the heck. Morning physio consisted of the same routine as yesterday and repeated it all in the afternoon. Tomorrow I am set to get my first round of stem cells so am pretty excited about that. Although I am not exactly sure what to expect, I have been told by the others that it is nothing to be worried about. I am much more comfortable with the entire proceedure now that I have learned that the first one, at least, will be done by injection. Many others have had it and the word is that as long as you remain still afterwards, there should be little or no pain. I will have to wait until I have an MRI done to learn if I will be having surgery or not.
November 9th, 2006
I slep well, a solid 24 hours to my room-mates surprise. He had a little trouble with jet lag. I seem to have adjusted well and feel I am on track time wise. I would really love a shower but am having a little difficulty with the bathroom as I cannot seem to figure out how to get the wheelchair in there. Ours is not set us as well for a wheelchair as some others are. Oh well, our room is bigger so we will just have to make do. I have met several of the other patients and everyone seems to be very friendly. I guess all being here with a common purpose helps to forge bonds quickly. I had my first session of physio today. Accupuncture followed by electrical stimulation, the standing frame and balance exercises. We finished off with a little chinese massage. It was not nearly as long as others I noticed and I had to sit up for it as opposed to laying down. Now what gives with that Back to the room for a few hours then downstairs for dinner. That was about all the engery I had before calling it a day. The room is set up with a TV and a DVD player so that was nice.
November 8th, 2006
I have met many of the program support staff as well as other patients here for treatment. The only problem I have encountered so far is trying to remember all the names. Perhaps little nametags would be good idea :-0 I have started some of the initial tests required, blood etc and have found the staff excellent at not only keeping you aware of when and where you are suppose to be but they actually accompany you to the exact place you are suppose to be. Everything seems to be working out smoothly so far.
We went for authentic dim sum today and I must say it was delicious. I can hardly wait to go back and do it again. Problem is, it ends at 11:30 and I am scheduled for therapy every day intil then so I might have to play hookey one day in order to fit it in.
November 7th, 2006
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