It’s February 6, 2010 – almost five-months since my stem cell therapy at the XCell Center.
Back when I started this blog in August of 2009, I hoped by now I’d be reporting a marked improvement in my overall condition. To be honest, I can’t make that definite of a claim. I can, however, report that my current MSA status has not worsened over these past months and, in fact, some small, positive steps have been observed. First, the urgency/frequency situation has improved – not as many visits to the restroom. And second, as I reported in a previous entry, my once weak and strained voice has returned to almost normal. Otherwise, everything is about the same.
Is it time yet to pronounce whether the stem cell therapy has been a success or a waste of time and money? No – not yet. I plan to wait the full six months (mid-March) before trying to sum it all up.
On another note, I was sorry to read Vic’s entry on the Shy-Drager Support Group website noting that his wife Wanda’s condition has deteriorated in the six months since her XCell treatment. I agree with Vic’s concern that XCell has not followed up or made any contact since the treatment. Aside from an electronic Christmas card – I haven’t heard from them either. By their silence, one is forced to conclude the overall, cumulative findings may not be favorable. Since they make a point of stating that any results may take up to six months to appear – there should definitely be a six-month status check with each patient.
More in a couple of weeks.
Saturday, February 6, 2010
Friday, January 22, 2010
Post 19 - Eighteen weeks after stem cell treatment
While I would prefer great positive strides in my fight with MSA, I appreciate even small steps in the right direction. One of those small steps is what took place this past Wednesday.
In my last entry I mentioned a concern that my condition might prevent getting through the two, back-to-back Elderhostel classes I present at a local college. I was especially concerned my voice would give out and I’d be forced to cancel the classes (dysphasia – throat/voice impairment is common with MSA). Well, after about an hour into the first class, I thought my fear was materializing. My throat suddenly felt constricted and my voice began to fail. A few gulps of water and a throat lozenge had little effect. Then, after a quick break, some strenuous throat-clearing efforts, and a few more sips of water, the constriction suddenly relaxed and I was able to continue. Thankfully, the problem did not recur during the afternoon class - in fact, by the end of the day my voice seemed stronger and clearer than it’s been in months.
(Added 1/27/10 - Finished my second Wednesday of classes. Throat and voice stayed strong throughout the full four hours).
The lesson I’ve learned from this episode is – if at all possible – keep exercising the areas that are most commonly affected by MSA to slow their deterioration. Try to walk, lift weights, exercise, sing, dance, and do whatever you can to postpone the atrophy that makes this disease so frustrating.
Speaking of frustration – I spoke last time about enthusiasm vs. fatigue experienced by most MSA patients – how we want to do something active but back away because we just don’t have the energy. Little triumphs like I experienced a few days ago serve as a reminder, for me at least, that we can take positive steps to prolong our active lives while medical science searches for the ultimate answer to MSA.
Stem Cell therapy status: No dramatic improvement to report – but no marked deterioration either.
Will update in a couple of weeks
In my last entry I mentioned a concern that my condition might prevent getting through the two, back-to-back Elderhostel classes I present at a local college. I was especially concerned my voice would give out and I’d be forced to cancel the classes (dysphasia – throat/voice impairment is common with MSA). Well, after about an hour into the first class, I thought my fear was materializing. My throat suddenly felt constricted and my voice began to fail. A few gulps of water and a throat lozenge had little effect. Then, after a quick break, some strenuous throat-clearing efforts, and a few more sips of water, the constriction suddenly relaxed and I was able to continue. Thankfully, the problem did not recur during the afternoon class - in fact, by the end of the day my voice seemed stronger and clearer than it’s been in months.
(Added 1/27/10 - Finished my second Wednesday of classes. Throat and voice stayed strong throughout the full four hours).
The lesson I’ve learned from this episode is – if at all possible – keep exercising the areas that are most commonly affected by MSA to slow their deterioration. Try to walk, lift weights, exercise, sing, dance, and do whatever you can to postpone the atrophy that makes this disease so frustrating.
Speaking of frustration – I spoke last time about enthusiasm vs. fatigue experienced by most MSA patients – how we want to do something active but back away because we just don’t have the energy. Little triumphs like I experienced a few days ago serve as a reminder, for me at least, that we can take positive steps to prolong our active lives while medical science searches for the ultimate answer to MSA.
Stem Cell therapy status: No dramatic improvement to report – but no marked deterioration either.
Will update in a couple of weeks
Tuesday, January 5, 2010
Post 18 - Sixteen weeks after treatment
Happy New Year to everyone! Fran and I hope 2010 brings good health and good fortune to all. Christmas week was great fun here in SW Florida – my two daughters, granddaughter, son-in-law, and even a big old chocolate Labrador brought much joy to our home.
All the extra activity of the Holiday Season was a bit tiring for me. Thank goodness for a few well-placed afternoon naps to “re-charge” my batteries. In addition, I’ve been more physically active preparing for our move into a condo complex. Packing, some spackling and painting, and store trips to look at new furnishings also added to the fatigue factor.
Right now my biggest complaint involves balance related issues. I’m really shaky when I walk and not able to safely do many simple things – like climbing a stepladder or even carrying a full cup of coffee. I start another term teaching two Elderhostel courses next week and what with my unsteady gait and difficulty pronouncing certain multi-syllable words, I hope I don’t give the class the impression I’ve been drinking at ten o’clock in the morning. I better explain things right at the beginning. I’m also concerned that my voice won’t hold out through two back-to-back, 2- hour classes.
Finally, I still can’t tell if the stem cell procedure has had any effect – good or bad. It’s been almost four months since my trip to XCell and I guess I had high hopes for some positive sign by now. Maybe the New Year will bring a pleasant surprise. Otherwise, I feel pretty good – which makes it very frustrating when I have the enthusiasm to do something but find I just can’t do it.
Again – Happy 2010 (or 2K10, or twenty ten, or whatever you want to call it). I’ll be back in a couple of weeks.
All the extra activity of the Holiday Season was a bit tiring for me. Thank goodness for a few well-placed afternoon naps to “re-charge” my batteries. In addition, I’ve been more physically active preparing for our move into a condo complex. Packing, some spackling and painting, and store trips to look at new furnishings also added to the fatigue factor.
Right now my biggest complaint involves balance related issues. I’m really shaky when I walk and not able to safely do many simple things – like climbing a stepladder or even carrying a full cup of coffee. I start another term teaching two Elderhostel courses next week and what with my unsteady gait and difficulty pronouncing certain multi-syllable words, I hope I don’t give the class the impression I’ve been drinking at ten o’clock in the morning. I better explain things right at the beginning. I’m also concerned that my voice won’t hold out through two back-to-back, 2- hour classes.
Finally, I still can’t tell if the stem cell procedure has had any effect – good or bad. It’s been almost four months since my trip to XCell and I guess I had high hopes for some positive sign by now. Maybe the New Year will bring a pleasant surprise. Otherwise, I feel pretty good – which makes it very frustrating when I have the enthusiasm to do something but find I just can’t do it.
Again – Happy 2010 (or 2K10, or twenty ten, or whatever you want to call it). I’ll be back in a couple of weeks.
Tuesday, December 15, 2009
Post 17 - Twelve weeks after treatment
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.
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.
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"
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