Tuesday, July 12, 2011

Post 39 - How & Why This Blog Has Changed

The original intent of this blog, which began almost 2 years ago, on August 4, 2009, was to describe my decision to undergo stem cell therapy and my selection of the XCell Center in Cologne, Germany to conduct the procedure - which I underwent in September of that year. In early 2009 when I first let it be known that I was considering such a procedure, I received quite a few requests for additional details. Instead of the time consuming process of replying to each questioner, I decided to create this blog where one comment would reach everyone.

Blog entries 1-8 covered the XCell selection/application process and tried to cover the many preliminaries leading up to the procedure. Entries 9 & 10 were written while at XCell and described the actual procedure along with some of the pleasant experiences in Cologne.
Entries 11 -22 were created every two weeks after arriving home, in which I covered what was happening to me physically – good or bad. For the most part, those 12 entries revealed no significant improvement in my condition, just continuation of a gradual decline.

In March 2010, the time between entries increased to one per month. This increase was decided on because I could no longer see a reason to report the “non event” of little or no positive change in my condition. I’ve continued the monthly sequence for a little over a year now and realize this blog has slowly changed its focus.

I can’t add anything more about the stem cell procedure I underwent 17 months ago. Frankly, I don’t believe it had any significant impact on my condition. I knew the chances for improvement were slim from the beginning, but couldn’t rule out that small hope the procedure offered. As for XCell, I am disappointed, at first by their lack of patient follow-up and simple research, i.e. how many MSA patients have received stem cell treatment and what do follow-up interviews reveal? And now, I’m very disappointed by the recent events which have led to their closure and filing for insolvency; events which portray the clinic as one run by medical opportunists who held out false hope to desperate patients.

From now on, I’ll simply report on my overall condition and some of the steps I take to try and maintain my health. I guess this blog has become something of a catharsis for me; a place where I can candidly discuss my condition and try to make some sense out of this weird ride I’m taking. You’re welcome to come along with me.

2 comments:

  1. Even a glimpse into your day and how you approach things is helpful to someone else struggling with a condition. It doesn't even have to be the same thing. I appreciate the time you take to share your journey.

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  2. Thank you for your blog; I have just come across it while I was looking into stem cell treatment and found your above comments very interesting and helpful. My husband has MSA and upon reading further down, I found so many similarities in the MSA 'journey'.
    I shall bookmark your blog.
    Patto, Melbourne, Australia

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