I’m a few days late with my regular two-week stem cell treatment update but things have been a little hectic around here. First, Fran & I have gone to contract on a condo unit not too far from our current home (one of my previous messages mentioned how it was becoming more and more difficult to maintain a house & property). Second, we’ve just finished a 3-day garage/moving sale which got rid of a lot of stuff that didn’t need to make the trip to the condo (rakes, shovels, tools, and much more).
Preparing for and carrying out the yard sale involved much more than the usual physical activity on my part. First came bringing everything out to the garage, then displaying and pricing each item. Next came 3 days of talking with “customers” and making sure everything went well. Finally came the cleaning of the garage and trip to the recycle center with the sad, unsold remains.
So, understandably I’m a little more “wobbly” than usual and my legs are still somewhat fatigued from all the activity, but overall I came through it better than I thought I would. Can I definitely say the stem cell treatment – now almost 3 months in the past – played any part in my ability to get through these events or would it have been the same without the treatment? I guess we’ll never really know for sure. That’s a mystery that remains to be solved. But, all things considered, I feel pretty good.
Since I don’t plan another update until early January – Fran and I would like to wish everyone (over 3000) who have visited this blog our sincerest best wishes for a joyous Holiday Season. May the New Year be one of peace, happiness, and good health. And to those of you joining me on this journey – let’s hope 2010 is a year of positive breakthroughs against this ridiculous disease.
Tuesday, December 15, 2009
Thursday, December 3, 2009
Post 16 - Interesting newspaper article
I just came across a newspaper article that might be of interest to people contemplating XCell stem cell treatment. It describes the experience of a Nova Scotia MSA patient who underwent the procedure. The article is dated 10/13/09 so the information is very current. The link to the article is: http://www.southshorenow.ca/archives/2009/101309/news/index016.php
Thursday, November 26, 2009
Post 15 - Ten weeks after stem cell treatment
It seems like only a few days ago, but it’s actually been ten weeks since my trip to Cologne, Germany and stem cell treatment at the XCell Center.
Until now, I’ve reported no noticeable change in my overall MSA status. I think I’ve basically said that I have felt no different than I did before receiving the treatment.
That statement was accurate until just a few days ago - when I experienced a feeling of subtle improvement. Sure, I still walk unsteadily, slur some multi-syllable words, and have a “thick” throat after talking loudly (I teach an Elderhostel program and my voice and throat are affected after an hour or so) – but recently these and other MSA symptoms just don’t seem as pronounced. Like I said, it’s a subtle change but one I hope is just the start of a lasting improvement.
So, I’m cautiously optimistic about my current status – cautious because it’s too soon to know if it’s real, but optimistic that it may be the start an upward trend.
Finally, I’ve added a link to the blog of Mariko S. who is considering a trip to XCell. She joins Eddie, Skeet, and a growing list of others who have or may soon begin a stem cell segment on their MSA Journey.
Until now, I’ve reported no noticeable change in my overall MSA status. I think I’ve basically said that I have felt no different than I did before receiving the treatment.
That statement was accurate until just a few days ago - when I experienced a feeling of subtle improvement. Sure, I still walk unsteadily, slur some multi-syllable words, and have a “thick” throat after talking loudly (I teach an Elderhostel program and my voice and throat are affected after an hour or so) – but recently these and other MSA symptoms just don’t seem as pronounced. Like I said, it’s a subtle change but one I hope is just the start of a lasting improvement.
So, I’m cautiously optimistic about my current status – cautious because it’s too soon to know if it’s real, but optimistic that it may be the start an upward trend.
Finally, I’ve added a link to the blog of Mariko S. who is considering a trip to XCell. She joins Eddie, Skeet, and a growing list of others who have or may soon begin a stem cell segment on their MSA Journey.
Friday, November 13, 2009
Post 14 – Eight weeks after XCell treatment
Eight weeks have passed since my stem cell therapy at the XCell Center. Frankly, there’s been no noticeable improvement in my overall condition. Still walking like a drunk, sleeping too few hours, having difficulty pronouncing multi-syllable words, and occasionally feeling like my throat is full of cotton causing my voice to break up. Tried to do some lawn & shrub clean-up last week (it’s finally cooled off some here in SW Florida) but my legs told me to pack it in after little more than an hour. That convinced me it’s time to look into condo living
I’ve decided against the Inter-Stim procedure mentioned in the last post. I found it’s used most often on people who have more advanced urological problems than I. For now, I’ll stay with the Sanctura medication and hope for the best.
On the bright side, there’s been no worsening of my condition. Aside from asking Fran to do most of the driving – I can’t complain.
Finally, I was happy to hear XCell patient Skeet produced 6 million stem cells for his treatment. That has to be some kind of record!
See you in two weeks with the next report.
Added Nov 16: Forgot to mention that I've added links to the blogs of two others who recently underwent XCell stem cell treatment. Those links can be found on the left column of this page under "XCell related blogs"
I’ve decided against the Inter-Stim procedure mentioned in the last post. I found it’s used most often on people who have more advanced urological problems than I. For now, I’ll stay with the Sanctura medication and hope for the best.
On the bright side, there’s been no worsening of my condition. Aside from asking Fran to do most of the driving – I can’t complain.
Finally, I was happy to hear XCell patient Skeet produced 6 million stem cells for his treatment. That has to be some kind of record!
See you in two weeks with the next report.
Added Nov 16: Forgot to mention that I've added links to the blogs of two others who recently underwent XCell stem cell treatment. Those links can be found on the left column of this page under "XCell related blogs"
Saturday, October 31, 2009
Post 13 - 6 weeks after treatment at XCell
About six weeks have gone by since I returned from Germany and stem cell implantation. If there has been any improvement in my condition, I would describe it as ‘modest,’ at best. Fran and my daughters and a few friends have made comments such as, “You seem to be walking straighter,” “You look steadier,” “Your voice sounds stronger,” and “You look better than before.” The last comment may be because I’ve gained several pounds and even I have to admit I look less gaunt. Overall, I feel pretty well. I’m keeping up the exercises and waiting anxiously for SW Florida to cool off (still near 90 each day).
My main complaint right now involves disturbed sleep due to frequently waking up to use the bathroom. I’m averaging between 5 to 6 hours sleep each night with about 3 interruptions. As a result I usually need to nap in the afternoon and can't help dozing off and on starting around 9:30 each night. I told my urologist I was unhappy with the Sanctura he prescribed (the latest in a long line of similar medications). His suggestion was for me to consider a procedure known as InterStim which implants small battery powered electrodes (similar to a pacemaker) in the sacral nerves of the lower back which control bladder function. What I’ve researched so far makes InterStim look like a promising alternative to medications with only limited effectiveness.
Finally, I’m happy Pat and Eddie’s trip to the XCell Center went well. And good luck to Skeet as well as Tulio, who both will be heading to XCell in early November.
I’ll be back in about two weeks with the next progress report.
My main complaint right now involves disturbed sleep due to frequently waking up to use the bathroom. I’m averaging between 5 to 6 hours sleep each night with about 3 interruptions. As a result I usually need to nap in the afternoon and can't help dozing off and on starting around 9:30 each night. I told my urologist I was unhappy with the Sanctura he prescribed (the latest in a long line of similar medications). His suggestion was for me to consider a procedure known as InterStim which implants small battery powered electrodes (similar to a pacemaker) in the sacral nerves of the lower back which control bladder function. What I’ve researched so far makes InterStim look like a promising alternative to medications with only limited effectiveness.
Finally, I’m happy Pat and Eddie’s trip to the XCell Center went well. And good luck to Skeet as well as Tulio, who both will be heading to XCell in early November.
I’ll be back in about two weeks with the next progress report.
Wednesday, October 14, 2009
Post 12 - Four weeks after XCell treatment
Its four weeks now since I underwent stem cell treatment at the XCell Center in Cologne, Germany.
Fortunately, the fatigue and body aches mentioned in my last entry have subsided. Some of the other MSA-related symptoms that seemed to get worse right after the treatment have improved as well – namely balance, dizziness and sleep disturbance. All in all, I’m pretty much the same as just before the trip to Germany.
As noted by the doctors at the XCell Center, it may take up to six months before meaningful improvement is observed. To help things along, I’ve resumed my modest exercise regimen of stretches, weights, and stationary bicycle. I wish the weather here in SW Florida would finally cool down (its still 90 and humid during the day) so it’s safe to walk my overweight little dog, Chico.
I’ll post again in two weeks and will keep doing so every two weeks until all these MSA-related symptoms are just a bad memory. In the meantime – good luck to MSA’ers like Eddie (& Pat) who will soon take the trip to Germany in the search for a healthy, MSA-free life.
Fortunately, the fatigue and body aches mentioned in my last entry have subsided. Some of the other MSA-related symptoms that seemed to get worse right after the treatment have improved as well – namely balance, dizziness and sleep disturbance. All in all, I’m pretty much the same as just before the trip to Germany.
As noted by the doctors at the XCell Center, it may take up to six months before meaningful improvement is observed. To help things along, I’ve resumed my modest exercise regimen of stretches, weights, and stationary bicycle. I wish the weather here in SW Florida would finally cool down (its still 90 and humid during the day) so it’s safe to walk my overweight little dog, Chico.
I’ll post again in two weeks and will keep doing so every two weeks until all these MSA-related symptoms are just a bad memory. In the meantime – good luck to MSA’ers like Eddie (& Pat) who will soon take the trip to Germany in the search for a healthy, MSA-free life.
Thursday, October 1, 2009
Post 11 - Two weeks after XCell treatment
Today marks two weeks since receiving my stem cell implant at the XCell Center. At the beginning of this blog I promised to keep my comments factual and honest. Well, I must honestly report there has been no noticeable improvement in my MSA condition; in fact, a few of my symptoms seem worse than before. I think I’m still paying the price for being overly active during the trip to Germany. I walked too much and dragged around a suitcase and carry-on computer bag. Combine that with flight delays and hanging around airports and I’m not surprised by the subsequent headaches, neck and shoulder pain, and sciatica-like pain from my buttocks down both legs to my calves. I’m assuming this is all trip-related since it’s slowly lessening thanks to ibuprofen and hot showers.
What concerns me more are the worsened balance and gait problems, erratic sleep habits, constant fatigue, and pronounced dizziness when standing or walking. While I was prepared to experience some “down side” with the entire process, this is more than I anticipated. I suppose there is nothing else now then to just “tough it out” and hope to experience gradual improvement.
I do suggest to those considering stem cell therapy in Germany or elsewhere; remember you are there for a significant medical procedure and not to wear yourself out as a tourist – like me.
I’ll be back in two weeks – hopefully with a more optimistic report
What concerns me more are the worsened balance and gait problems, erratic sleep habits, constant fatigue, and pronounced dizziness when standing or walking. While I was prepared to experience some “down side” with the entire process, this is more than I anticipated. I suppose there is nothing else now then to just “tough it out” and hope to experience gradual improvement.
I do suggest to those considering stem cell therapy in Germany or elsewhere; remember you are there for a significant medical procedure and not to wear yourself out as a tourist – like me.
I’ll be back in two weeks – hopefully with a more optimistic report
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