Monday, July 25, 2011

Post 40 - Status Check

In preparation for my scheduled three month visit with my GP at the end of this week, I was taking stock of my current condition and listing any questions I wanted to ask him. I’ve learned to make the list ahead of time so I don’t forget something while speaking with him (I’m forgetting simple things more frequently as this disease progresses). While listing my current condition, I realized it’s been awhile since I compared the extent of my symptoms to earlier findings.

In Post #3 (Aug 2009), I felt my condition deserved a 4 out of a total of 10 with a 10 being the worst (completely dependent for care). In Post #23, seven months later (Mar 2010), I happily reported no significant deterioration and again felt my condition rated another 4. That optimism was short-lived, however, when just three months later in Post 26 (Jun 2010), I reported an overall deterioration of most symptoms, which realistically raised the listing to a 6.

Here we are in late July of 2011 – almost a year since the last time I offered a rating. First, let me state that my symptoms are basically the same as I spelled out in Post #3, nearly two years ago. With the exception of serious sleep disturbances, each of them continues – only worse. Judging on how much I’m depending on Fran and my friends for everyday assistance, I now feel my overall condition rates an 8. Fortunately, there’s no pain associated with this condition (unless, of course, I continue to fall, trip, or stumble).

My medication list hasn’t changed much – actually it’s been reduced:
B-12 injection (1x monthly)
Folic acid (in conjunction w/B-12) (2x daily)
Paxil (to avoid cluster headaches) (1x daily)
Florinef (for low BP) (1x daily)
Sanctura (for urinary issues) (1x daily)

I don’t anticipate my GP will change anything – either physically or pharmacologically – but who knows? I’ll post any changes.

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.