WORKS FOR ME!

I thought the W-FIVE story turned out well and didn’t contain any misinformation or a biased perspective. All viewpoints were presented in a fair manner and other than Dr. Freedman’s personal opinion; I don’t feel that there was a negative slant towards stem cell treatments offered in China. On the contrary, I found Dr. Freedman’s case to be less persuasive and convincing to someone like myself who is on the suffering end of this debate. Not to take anything away from his amazing achievements because I truly appreciate and recognize the importance of the research he is doing but it does not offer a direct treatment option.
I have seen how fast this disease can turn and completely devastate a body, I actually feel lucky when I compare myself with others that have deteriorated to complete incapacitation within one or two years. When one faces this possibility a sense of desperation is natural as I stated in the interview. The point I really hoped would be expressed by the documentary is that hope does exist. Judging by the feedback I’m receiving, that point was successfully conveyed! I had over a dozen email messages by 10 o’clock that evening, all of them very positive. I’d like to thank everyone who is sending out such encouraging support to me, I really enjoy the communication that has opened up. I’ve had several phone calls from out of the blue from people wanting to discuss my experience and ask questions which I think is great. The more exposure that is created the easier it will be for people to find information on what options exist. Travelling to China for stem cell transplants might not be the best option for everyone, this is a personal decision for every individual but everyone should at least have knowledge of what is available.
I think Dr. Freedman’s study began in 2000, now nine years later and only 18 people have taken part with one of them dying. There are very similar studies occurring simultaneously in the US and elsewhere but again the number of participants is very low and it is difficult to find a control group because everyone wants the treatment! As promising as this research may look, it will likely be past 2020 by the time anything is approved and made available. At the same time there are plenty of new and promising research projects going on throughout the world and somebody could come up with a breakthrough anytime but this is hopeful speculation and doesn’t offer any current alternatives. Of coarse the mainstream medical research bodies will be sceptical of what the Chinese are doing but the point is that they are doing something and that something is tangible and real now. What they are doing is creating hope and after being there myself, this is a hope based on real life experiences not just fictitious episodes or placebo induced improvements that many researchers would claim. Beike Biotech is operated as a business but the compassion and caring demonstrated by every person involved in the stem cell program was amazing so I have to refute Dr. Freedman’s statement that the only reason for their existence is to take peoples money.
I am happy to report that Beike seems to be responding to its patient’s recommendations and has initiated a more thorough follow up procedure. Just yesterday I received an email requesting information about the results I’ve experienced since leaving China in order to help Beike with their own research as well as improve their treatments for new and returning MS patients. One form is an MS Daily Life Functional Rating Scale and the other is clinical data from blood and urine tests that have very comprehensive requirements. I’m not sure what my doctor or the lab will think of their request but I am impressed that they are now taking this seriously and that the information request is not generic to stem cell treatments but focused on multiple sclerosis. I really believe that what the Chinese are doing is world class and they represent the future for development of stem cell treatments and yes cures!
I realize that there are many new people becoming aware of my blog since the W-FIVE documentary so those that haven’t followed are all curious about how I’ve been doing. Without getting into the details of my post transplant recovery that I may have already written about, I’ll just say that I feel better than before I went. Not that I can claim any great improvements and I still experience many MS difficulties but overall I think I’m better and more importantly, I know I’m not worse. Describing my progress is like watching your children grow up, you hardly notice them changing because you see them all the time but when you look back 6 months or a year the changes are huge. Although I still have many problems I can do things today that were not possible before I went to China. It still depends on the day but when I’m feeling good I often surprise myself with how well I’m able to walk or climb stairs. Time will be the ultimate judge of success but I still feel encouraged and yes I am still very happy that I made the journey!
I’m always happy to discuss my experience or share information with others who are interested in stem cell transplants so please keep up the communication. I can’t promise that I’ll be able to reply to all enquiries and emails but I’ll do my best.
LC

CELEBRITY STATUS IS ABOUT TO RETURN

Yes CTV finally got themselves organized enough to confirm a date for the W-FIVE documentary, it will air Saturday February 21st at 7:00 pm. I’m not too sure what to expect since I learned the fundamental lesson to not trust the media. I do however feel much more comfortable with the CTV production and can’t foresee any hidden agenda behind the story. The producer Brett Mitchell was great to work with as were all the crew members including the camera man in China. I’m sure it will turn out good but I still don’t like promoting something that I haven’t seen. For anyone who is not able to catch the episode on TV it will also be available for viewing on ctv.ca, click on W-FIVE and you can download the show but it can take a couple of weeks before it’s available.
As for my health update, I don’t really have any great news to report. After a reprieve for a few weeks, the sharp pains in my chest have returned but they have changed. The pain can show up anytime and is no longer triggered by specific movements. It lasts much longer but feels less intense and will spontaneously reoccur throughout the entire day. The instant sting does not produce a painful grimace anymore but perhaps I’m just getting used to it and able to ignore it somewhat. My eyes have bothered me ever since I lost the vision in my left eye in 2007 from an MS attack. My eyesight eventually recovered but has never been the same. My eyes tend to get very sore and the vision in my left becomes blurry particularly when I’m tired or fatigued. Yesterday was a different story, my eyes began to get very sore while I was in church and the discomfort continued into the afternoon with both eyes becoming blurred. I was cruising around Costco on my scooter and of course it was very busy being a Sunday afternoon. Things were definitely not normal and I was actually surprised that I didn’t run into anyone or knock over any displays because my vision had become extremely blurry (good thing I’m an expert driver on my scooter)! I don’t recall my eyes ever being this bad other than when I first lost my sight and again there didn’t seem to be a reason for this. The situation did cause some concern but fortunately everything seems to be back to normal this morning.
I suppose it’s good that I have my blog to express some of the concerns and problems that I go through because I don’t normally complain about anything so this is sort of an outlet for me. It’s typical for me to just deal with my issues internally which was probably one of the main causes of the communication problem that developed in my marriage. Anyway I just don’t like to complain, it doesn’t make me feel any better and I’m not looking for sympathy. I recall going to my doctor one day when the woman at the reception commented on how happy I always seem to be. She said that I always have a smile on my face and she has never heard me complain about anything. She found it very uplifting that I was always positive where as if anyone had something to whine about it was me yet all day long people file in and out of that office complaining about nothing really. I’m very thankful that I don’t live this way!
The cold that I thought I had beaten showed up again on Friday so I wasn’t feeling very well up until Sunday. Perhaps this had something to do with my eye problems but again I feel okay today. I took it pretty easy Friday and Saturday so I guess it’s good that I didn’t have anyone to disappoint for Valentine’s Day. It’s actually been kind of lonely since I didn’t have my children and I ended up having the whole house to myself. Well I’ve been dog sitting so I guess I haven’t been completely alone and the weekend has turned out to be quite productive. I found myself in an excellent writing groove and made a lot of progress on my book and cooked up a large batch of spaghetti sauce that I’ll freeze and get three meals out of. Family day has turned into a week off of school so I’ll get to spend the entire week with my kids, looking forward to that! Saturday is not far off so I’ll be looking forward to watching W-FIVE as well. We’ll see how the show turns out but good or bad I’ll write about it in my next blog. It will also be interesting to see if anything will happen with the number of hits my website and blog receive after the show has aired.
Stay tuned,
LC