It is with great excitement I would like to announce that I am getting ready to head back to China for my second round of stem cell treatment the beginning of April.. I will be going to a different hospital much further to the north this time round but they have developed to the point now where they are trying to group together the same treatment conditions in order to become more specialized. They are getting much better results this way I have learned.
It has been some time now since I have noticed anything new and I should have returned earlier. The age old issues of having both the time and the money together at the same time. 
Hopefully I will have lots to post again very soon.
February 9th, 2008
Today, like many days, I had a back massage with a vibrating type device. My PSW was only bringing it part way down my back before resuming direction. I kept asking her to go lower as that was where my back hurts. After several requests she finally reached the afflicted area. She then asked my why I wanted that area massaged as it was where I had no feeling. With lot’s of excitement, we then started experimenting as to just how far and where I could now feel that.
Sensation, both finger tip and heavy pressure, at one time was right at the base of my surgical scar. (T-12). Today, I was able to feel the massager in a normal fashion to right below the base of the tail bone. I could still feel it on my buttocks but it had a more faded or secondary vibration type of sensation. It also felt wonderful when dragged right over my lumbars, something I haven’t experienced since before the accident. We also determined that finger tip sensation was now 3/4 of an inch below the scar.
I’m considering getting a very small tattoo of a horseshoe, both for good luck and for my horse Robbie, placed right at the old and the new sites of sensation. I’m not a huge fan of tattoo but I think it would be great to have a permanent record of exactly where feeling stops and starts. It would be sort of like a display of the steps taken in the exciting journey.
April 27th, 2007
It has been some time since I have posted here. As most of you should know, this is a very slow process hence there are not “break throughs” to report on a regular basis.
There is both good news and bad news. I am still on a wait list for out patient physio therapy, another 8 months I am told. January was a horrible month for me pain wise and I did very poorly regarding any home physio as I was usually in bed with pain. As a result, I lost the limited leg movement. This had been attributed to strengthening the lumber muscles due to the intense rehab in China. Last week I had a physio therapist visit me here in the home in order to develop an at home program that will be enhanced with a daily assistant. I’m sure it will not take long to regain what was recently lost.
Now for the good news. The area where I continue to see the most progress is bowel and bladder. I can now release the bladder and have a longer flow of urine before the bladder ceases. I have learned that the act of wistleing as one urinates helps prevent the bladder from closing. I am often able to get the bladder to release several times with just a slight stimulus. I have only been able to completely empty the bladder once and now find that I often have less than half of the volume to cath out. I am hopeful that soon, I will only need to cath in the morning and night in order to ensure the bladder is completely emptied. I continue to have more control over bowel elimination as well. Digital stimulation is only needed to sometimes begin the process or if I am constipated.
For me, I find sensation seems to be developing internally as opposed to externaly or tactiley. I can often sense my muscles moving and they feel in general like “stiff” muscles. I can contract my glutes with better control now and can feel them contract.
I am now three months post treatment and am pleased at the results so far. My home physio program will start next week so hopefully I will be posting more good news soon.
I am also going to begin in a new pain trail next week. This is involves intravenous xylocain administered through out the body for one hour once a week for four weeks. I’ll let you know the results.
March 9th, 2007
It has been some time since I have posted. After arriving home, I immediately returned to work. There were also several interviews with the media not to mention all that is required for getting ready for Christmas. Unfortunately, this meant that my physio routine has fallen by the wayside. I have noticed, with sadness, that my calf muscles have once again atropied. This is entirely my own fault but a good lesson learned. I have decided to take the month of January off work in order to devote my full time and energy to physio. I have also been really debilited with pain these last few weeks and have logged a lot of bed time.
Now for the good news. The constant pain in my legs resembles muscle stiffness and believe it or not, I have been told that this is a good sign. As sensation begins to return, there is often a lot of pain from the atrophied muscles. It means that the muscles are giving signals. Again, one more reason to persue a heavy physio routine. So I guess this is a good pain, if there is such a thing. It certainly has given me a renewed sense of purpose and goal acheivement.
Something else odd, but new, occured today. As I awoke this morning and began to toss the bedcovers off, I gasped at the coldness in the air. I quickly huddled back under the covers. As I pulled my legs up close to me I discovered that my right leg, the one that had been exposed to the cold air, was covered in goosebumps on the thigh. Later, when I got fully out of bed, I again noticed that both legs in the bare thigh area were covered in goosebumps. How in the world can legs that have no sensation to hot or cold do that? I did some inquiring and learned that this is a very promising sign. Goosebumps are a neurilogical response so the legs are getting some signals. The next step will be for them to give signals.
Although it is late evening now, I think I am going to get on my passive leg trainer right now.
January 3rd, 2007
I discovered a few days ago that I can now contract my glutes. Of course, both my daughters reeled back in horror when I asked them to come feel Mommy’s butt. I have also noticed that both of my calf muscles are looking and feeling normal. When using my passive leg trainer, the calf muscles actually bulge and are rock hard just as they would normally be. I’m not positive, but I do believe I can feel my calf muscles working when using my bike.
I returned to work this week, just 3 days a week but it feels good to be “out there” again. CBC was here Tuesay afternoon to do filming for the documentary and our local TV station is coming today, Thursday. Between all this and Christmas quickly approaching, I have not had much time to write here. I will endeavour to be more regular.
December 14th, 2006
I had mixed emotions as Dec 3 arrived and it was time to head back to good old cold Canada. I had developed several warm friendships but did make arrangements to be able to keep in touch. Although I would have dearly loved to stay longer, if only for the therapy, I was also anxious to see my friends and family again. With Christmas drawing near, the need to “go home” was becoming apparent.
We had a great flight back and touched down 45 minutes early. As we exited the arrivals door I was surprised to see not only my daughters smiling and waving but the City TV news and camera crew. When we finished the interview, we only had another 20 minutes drive before arriving “home”. Several friends and neighbours dropped by to say hello and I was once again reminded how blessed I am to be part of this circle.
We all got to bed about midnight and the following morning I was able to get up and make breakfast for my youngest daughter before she headed off to school. Getting up to do this is something I was just not capable of doing prior to China. One of my neighours drove Jens to the airport as he was flying on to Florida to join his wife, Heather. It is impossible to put into words how greatful I am to both Jens and Heather for their generous offer that allowed this whole thing to become a reality.
So what now? Prior to heading to China, I had been referred by my family doctor to resume outpatient physiotherapy. Disappointingly, there is still no word regarding this. I do have an appointment with my physiatrist from Lyndhurst Spinal Rehab but that is not until Dec 18. With Christmas quickly approaching, he will not admit me for a 2 week assessment until sometime in the new year. At the moment, I have no option except to create my own daily physio program and that is exactly what I have done. I start my morning with 30 minutes in a standing frame followed by 30 minutes of stretches. Although I had a series of these I was doing on a regular basis, I have now incorporated several routines that I was doing in China. I do have someone who comes in every day for 1 and 1/2 hours in order to assist me with this. I finish with 30 minutes in my Saratoga Spirit. This is an arm/leg bicycle that gives passive training to the legs while allowing the upper body to improve both with muscle strength and tone. This also gives a great cardio workout. I try to work the standing frame and leg cycle later into the day for 2 additional 20-30 minute sessions but will admit that I usually only get one additional session in. Perhaps once all the backlog of details I am trying to attend to after being away for a month get managed, my routine will become more defined.
I continue to work on my bowel and bladder control and have finally been able to notice improvement in both areas as opposed to just one. I feel like a toddler again, “Baby went potty” I do find it a bit uncomfortable to discuss this aspect of my abilities but do realize it’s significance. I will do my best to keep this information updated as my comfort zone expands.
December 7th, 2006
I had my final injection today. It was a mixture of my own bone marrow stem cells, which were collected and cultured last week, mixed with the regular stem cells. The proceedure went smoothly as have all my injections. I now have the task of trying to get all my purchases packed to take home. I have decided to leave behind anything I do not absolutely need to take home. I have made friends with many other patients who will be staying on longer than their originally planned time so they will appreciate the “top up” of basic supplies so to speak. Certain items like catheters etc are difficult for them to find here and I would rather have the extra space in my suitcase. Shopping here is like a dream come true regarding prices and it has been very easy to get carried away with “just one more thing” .
I would dearly love to be able to extend my trip but it is not possible to change our tickets. I have decided to re-examine my schedule for the new year and see when I can arrange to return. I had an electrical stimulation test for the muscles done today. This test was conducted during my first week as well. The results show that there have been noticable changes, more so on the right side than the left. This is very exciting and encouraging news. I will take copies of these test results home with me as they would like the Drs there to do this test every 3 months in order to track changes. This will be clinical proof that the stem cells are actually doing something as predicted.
December 1st, 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
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