Sunday, June 27, 2010

Post 26 – Concluding My “Noble Experiment”

Almost one hundred years ago, America decided to fight the problems associated with alcoholism by banning the manufacture and sale of liquor. No one knew for sure whether Prohibition would succeed, but many believed it was at least “worth a try.” Thirteen years later, when Prohibition was considered a failure and had been repealed, observers came up with the term “Noble Experiment” to describe how good intentions don’t always turn out the way one hopes.

In a way, the stem cell procedure described in this blog might be considered my own Noble Experiment. Almost a year ago, I chose to face the problems associated with Multiple System Atrophy (MSA) by undergoing a procedure that uses one’s own stem cells to replace those cells affected by MSA. Nine months ago after I underwent treatment at the X-Cell Center in Cologne, Germany, I had high hopes the procedure would stall or maybe even reverse the effects of MSA. Even though the results were unpredictable, I figured it, like Prohibition, was “worth a try.”

Despite the treatment, I must report an ongoing deterioration in my overall condition – especially in my mobility. I am finding it very difficult to move around, even with a cane. I’m using a walker more and more both in and out of our new condo, mainly to avoid my greatest fear – a fall and broken bone. My other main complaints include a significant drop in blood pressure upon standing, frequent light-headiness brought on by simple movement/bending, poor speech volume/articulation, and somewhat diminished mental cognition. Overall, I’d say I’ve progressed (or regressed) to the mid-stages of MSA with a new rating of 6 with 10 being the worst.

Frankly, I feel that whatever benefit I may have gotten from the stem cell procedure is no longer a factor. I seem to be following the same general path so many other MSA patients have gone down before me, although I’ve wondered why the disease progresses more slowly in some than it does in others. I can’t be sure – but I think exercising and trying to stay fit (both physically and mentally) plays a major role.

So, I’ve decided to change the focus of this blog from one of sitting around waiting for my supercharged stem cells to save the day, to one taking a more active role in improving my own condition. Last month’s entry mentioned our move to a condo with a well-equipped fitness room. I plan, with help of the resident trainer, to develop a sensible exercise program aimed at staving off the atrophying effects of MSA.

Who knows, this may turn out to be just another Noble Experiment with little likelihood of success, but I figure its still “worth a try.” I’ll be back in a month or so with more on the exercise program.

Finally – to those of you still deciding whether to follow the stem cell path please don’t let my lack of long-term positive results dissuade you. I still believe medical science will eventually unlock the mystery of MSA through improvements in stem cell technology. Let’s hope that day is near.


  1. Will you consider another treatment? What if the batch you got just didn't take, or what if it worked a little but your immune system worked against the foreign cells? I wonder if there's something that would work in the future? Am rooting for you, hang in there. I appreciate you writing about your journey, what you grapple with is large and putting your story out there helps others in similar boats.

  2. Hi Steve and Fran,

    Thank you from the bottom of my heart for chronicling your "Noble Experiment". My father was diagnosed with MSA last year and we've been trying to explore various treatment options for him. I heard about blog on shydrager yahoo groups yesterday and read every single post.

    First and foremost I applaud the way you both have decided to fight MSA. Your blog has given hope to countless patients and their caregivers. I must also say that your detailed account is incredible, extremely valuable and I haven't found anything like it on the web.

    My hopes and prayers are with you.


    P.S. - My father has been doing yoga for the past 3-4 years and he feels that it has played a positive role in his battle with MSA. I thought I might mention this to you.

    My parents live in India and they are follow Yoga teachings of Baba Ramdev -

    Baba Ramdev has a English Yoga DVD on "Parkinson's and Paralysis". I found one on ebay

  3. Hi Steve: Thank you for documenting your journey with MSA and experience with stem cell replacement. It was with a heavy heart that I read your last post. My husband has MSA-C and has symptoms similar to yours, maybe not as advanced. We were hoping that your experience would be more encouraging. I'm sure you are disappointed. Please don't stop posting about your experiences and your progress, or lack thereof. People are reading, even if they don't post.

  4. Hi! My name is Eli Perez. My wife is afflicted with the same condition. We are in our early 60's and are working together to win against this scourge. Would you consider a partner to your journey? By the way, thanks for educating whoever cares to learn from your blog.

    God Bless.

  5. Hi! My name is Donna Sellers! I am 50 years old & have had MSA for 10 years! Thank you for this blog! My main problems are speech which is very slurred, blood pressure, fine motor skills,gsit and bladder issues! I do think positive attitude, prayers and staying active certainly helps me to cope with this disease! If you ever want to email me my address is! I appreciate you allowing others into your life!