Living with MSA eventually requires you to come to terms with the fact that life now involves an ongoing series of concessions. While these concessions may be hard to accept at first, eventually reality prevails and you realize they must be made for safety reasons. Probably the biggest concession I made came almost two years ago with the realization I needed a cane to steady myself and prevent falls. Next, I grudgingly conceded I got less fatigued if a wheelchair was occasionally used in airports, museums or other places where a lot of walking was involved. The latest concession came this past month when my primary care physician saw how my balance and gait had deteriorated and wrote a prescription for a rollator (which is four-wheeled walker with hand brakes and a fold down seat). Funny, but once I accepted the cane, the other concessions have all been easier – I fear falling and breaking a bone much more than I care how I appear to others.
As mentioned, I saw my primary care physician last month and while he didn’t change anything except adding the rollator, he did increase the frequency of my visits from six months to every three. My guess is he senses my condition may be changing and he needs to monitor it more frequently. I can’t argue with that logic.
Aside from the increasingly difficult balance/gait the only other concern right now is my voice clarity and articulation. Both seem to be somewhat worse.
Finally, my posting next month will come from our new condo on which we close in about a week. I’m really looking forward to the move which includes use of a nicely equipped fitness facility and heated pool. Now I’ll have no excuse not to get into better shape and try to stall the physical effects of this ridiculous disease. Who knows, maybe there are still a few stem cells lurking around that need a mission.
See you in a month – if the move doesn’t do me in first.
Monday, May 17, 2010
Saturday, April 17, 2010
Post 24 - Seven months after treatment
There’s been a change in my overall status – and I’m sorry to say it isn’t for the better.
My balance and gait have declined noticeably over the past month. I’m having a difficult time walking and have come very close to a major fall on several occasions – in fact one did occur while cleaning and storing a pool cover. Everything was going well until I carried the cleaned and folded cover toward an equipment closet, lost my balance and fell right into the pool. Thank goodness it was a soft, albeit wet, landing.
I’m guessing that some of this problem stems from the fact I’ve been more physically active this past month. We have sold our house and I’m doing lots of things in preparation for the move. I’m probably trying to do more than I should and need to be more careful – I definitely don’t need a broken bone or other injury. I’m hopeful when the move is concluded in June, and I get into a more normal routine, the balance/gait issue will improve.
Otherwise – all other “systems” are about the same. See you in a month
My balance and gait have declined noticeably over the past month. I’m having a difficult time walking and have come very close to a major fall on several occasions – in fact one did occur while cleaning and storing a pool cover. Everything was going well until I carried the cleaned and folded cover toward an equipment closet, lost my balance and fell right into the pool. Thank goodness it was a soft, albeit wet, landing.
I’m guessing that some of this problem stems from the fact I’ve been more physically active this past month. We have sold our house and I’m doing lots of things in preparation for the move. I’m probably trying to do more than I should and need to be more careful – I definitely don’t need a broken bone or other injury. I’m hopeful when the move is concluded in June, and I get into a more normal routine, the balance/gait issue will improve.
Otherwise – all other “systems” are about the same. See you in a month
Friday, March 19, 2010
Post 23 - Six month summary
It’s been six months since I traveled to Cologne, Germany for stem cell therapy at the XCell Center. I decided to wait a full six months before summarizing whether the therapy had any effect on my condition. The six month decision was prompted by the statement from XCell that any results, if they occur, may take six months or more to materialize. That said; let me try to sum things up.
In August of 2009, in blog entry #3, I listed my condition at that time, a month before undergoing the stem cell procedure. Perhaps it would be best to make some before/after comparisons to help judge the success of the therapy.
Overall, I still feel I’m in the early to mid-stages of MSA. On a scale of 1-10 with 10 being the worst, I continue to rate my condition as a 4. Individual comparisons are as follows:
• Gait/Balance – I think my ability to walk straight (or even stay upright) is slightly worse than before – especially if I try to turn too quickly. Fortunately, I haven’t fallen yet, but have come close several times. I continue to constantly rely on my cane. I’ve found that certain surroundings or situations affect my balance more than others. For example, big stores with high ceilings really throw my balance out of whack as does trying to walk sideways to my seat in a theatre. I’ve also found that anything more than a small glass of wine really messes up my balance. And, I’ve learned something unusual about walking – the faster I walk, the straighter I go. Slow down or stroll and I’m all over the place.
• Occasional misplacement of left foot – Before, I would sometimes drag or scrape my left foot on the floor while walking. Haven’t done that in months.
• Leg muscle weakness – My legs still become “wobbly” and tired after exertion, especially if some bending or squatting is involved. No worse than before.
• “Coat Hanger” discomfort in neck/shoulders has intensified somewhat. It’s more like a “tingling” sensation rather than pain – localized in the rear-center of the neck. Hot showers and a neck massager really help.
• Urinary frequency/urgency (neurogenic bladder) - Some modest improvement here. Don’t have many “urgent” episodes. Frequency a bit less often too. Still need to get up several times a night, even with a nightly Sanctura capsule.
• Bowel function – Thankfully, not a serious problem.
• Loss of manual dexterity – about the same – I’m still frustratingly clumsy.
• Decreased libido – No change
• Sleep disturbance – This is one area I’m happy to say is no longer an issue. I don’t sleep for that long (average – 5/6 hrs) but I’m no longer “acting out”.
• Fatigue – Not quite as bad as before – still take an afternoon snooze, but I’ve always been a “napper” which is probably a holdover from my police days when shift-work forced one to grab a catnap whenever possible.
• Feeling of thickness in throat – Once in a while my voice cracks while speaking and throat feels congested. The problem responds favorably to speech exercises.
• Word enunciation – Recently I’ve developed a problem pronouncing certain words, especially multi-syllable ones. Feels like the muscles in my lips and mouth won’t form correctly. People have no trouble understanding me – but I can clearly feel the difference.
• Orthostatic hypotension – There’s been significant improvement in the big drop in blood pressure I experienced before the treatment. My pressure used to drop 30 or more points upon standing – now it’s no more than 20 points and I’ve had very few episodes of dizziness. I have been wearing knee-high pressure socks more often which probably helps.
• Diminished mental acuity – This is a hard one to describe. I just don’t feel as “sharp” as I used to – especially in decision-makings situations. This was becoming apparent before the procedure. I have a doctor’s visit in April when I’ll ask about reducing the strength of the anti-anxiety medication (citalopram) I began when first diagnosed with MSA in Nov 2008. I think there might be a correlation between this drug and my mental “sharpness”.
• Temperature sensitivity - This is something I haven’t mentioned before. I’ve become much more sensitive to temperature extremes – especially hot, humid weather. I’ve learned not to do any exertion outside here in SW Florida if it’s over 85 degrees – which it is practically six months a year. I came close to heat stroke before I realized my internal body “thermostat” is malfunctioning.
Before stem cell therapy, I listed my three greatest concerns - and the ones I hoped the procedure would improve: 1) disturbed balance/gait, 2) urinary issues, and 3) orthostatic hypotension. As of today, I will replace orthostatic hypotension in the #3 spot with concern over voice/throat-related issues. I really hope that’s a problem that doesn’t worsen.
Finally, how do I sum up these last six months and the overall result of my stem cell therapy? First and foremost, I’m glad I found the XCell Center and underwent the procedure. At a time when I was being told there was really nothing available to treat multiple system atrophy – the potential benefits of stem cell therapy offered a small ray of hope in an otherwise bleak scenario. XCell didn’t claim they would cure my condition – but would provide me with the latest in regenerative technology. I’m confident I made the right choice.
While initially I was hoping for immediate, dramatic results, it soon became clear that any positive effect would be of a gradual nature. That’s why I can’t be sure how the procedure has influenced my overall condition – no more than I can predict what I’d be like today had I not undergone the treatment. Simply stated, in some areas I’ve improved – in others I haven’t.
There’s another aspect of this entire procedure that has to be taken into account. Due to a longtime low blood count, the number of stem cells taken from my bone marrow was also low - 700 thousand versus the normal 2 million or more. If my results don’t meet expectations – that deficiency might be the cause (XCell told me of this before the procedure).
To those of you trying to decide whether stem cell therapy is right for you – I hope I’ve provided a helpful, firsthand account of what the treatment actually involves. I plan to continue these posts, but on a monthly rather than bi-weekly basis. I’m still confident that stem cell technology will eventually unlock the mystery of this debilitating disease and allow all of us to enjoy long and active lives.
Good luck to each of you. Don’t hesitate to contact me if I can answer any other questions.
In August of 2009, in blog entry #3, I listed my condition at that time, a month before undergoing the stem cell procedure. Perhaps it would be best to make some before/after comparisons to help judge the success of the therapy.
Overall, I still feel I’m in the early to mid-stages of MSA. On a scale of 1-10 with 10 being the worst, I continue to rate my condition as a 4. Individual comparisons are as follows:
• Gait/Balance – I think my ability to walk straight (or even stay upright) is slightly worse than before – especially if I try to turn too quickly. Fortunately, I haven’t fallen yet, but have come close several times. I continue to constantly rely on my cane. I’ve found that certain surroundings or situations affect my balance more than others. For example, big stores with high ceilings really throw my balance out of whack as does trying to walk sideways to my seat in a theatre. I’ve also found that anything more than a small glass of wine really messes up my balance. And, I’ve learned something unusual about walking – the faster I walk, the straighter I go. Slow down or stroll and I’m all over the place.
• Occasional misplacement of left foot – Before, I would sometimes drag or scrape my left foot on the floor while walking. Haven’t done that in months.
• Leg muscle weakness – My legs still become “wobbly” and tired after exertion, especially if some bending or squatting is involved. No worse than before.
• “Coat Hanger” discomfort in neck/shoulders has intensified somewhat. It’s more like a “tingling” sensation rather than pain – localized in the rear-center of the neck. Hot showers and a neck massager really help.
• Urinary frequency/urgency (neurogenic bladder) - Some modest improvement here. Don’t have many “urgent” episodes. Frequency a bit less often too. Still need to get up several times a night, even with a nightly Sanctura capsule.
• Bowel function – Thankfully, not a serious problem.
• Loss of manual dexterity – about the same – I’m still frustratingly clumsy.
• Decreased libido – No change
• Sleep disturbance – This is one area I’m happy to say is no longer an issue. I don’t sleep for that long (average – 5/6 hrs) but I’m no longer “acting out”.
• Fatigue – Not quite as bad as before – still take an afternoon snooze, but I’ve always been a “napper” which is probably a holdover from my police days when shift-work forced one to grab a catnap whenever possible.
• Feeling of thickness in throat – Once in a while my voice cracks while speaking and throat feels congested. The problem responds favorably to speech exercises.
• Word enunciation – Recently I’ve developed a problem pronouncing certain words, especially multi-syllable ones. Feels like the muscles in my lips and mouth won’t form correctly. People have no trouble understanding me – but I can clearly feel the difference.
• Orthostatic hypotension – There’s been significant improvement in the big drop in blood pressure I experienced before the treatment. My pressure used to drop 30 or more points upon standing – now it’s no more than 20 points and I’ve had very few episodes of dizziness. I have been wearing knee-high pressure socks more often which probably helps.
• Diminished mental acuity – This is a hard one to describe. I just don’t feel as “sharp” as I used to – especially in decision-makings situations. This was becoming apparent before the procedure. I have a doctor’s visit in April when I’ll ask about reducing the strength of the anti-anxiety medication (citalopram) I began when first diagnosed with MSA in Nov 2008. I think there might be a correlation between this drug and my mental “sharpness”.
• Temperature sensitivity - This is something I haven’t mentioned before. I’ve become much more sensitive to temperature extremes – especially hot, humid weather. I’ve learned not to do any exertion outside here in SW Florida if it’s over 85 degrees – which it is practically six months a year. I came close to heat stroke before I realized my internal body “thermostat” is malfunctioning.
Before stem cell therapy, I listed my three greatest concerns - and the ones I hoped the procedure would improve: 1) disturbed balance/gait, 2) urinary issues, and 3) orthostatic hypotension. As of today, I will replace orthostatic hypotension in the #3 spot with concern over voice/throat-related issues. I really hope that’s a problem that doesn’t worsen.
Finally, how do I sum up these last six months and the overall result of my stem cell therapy? First and foremost, I’m glad I found the XCell Center and underwent the procedure. At a time when I was being told there was really nothing available to treat multiple system atrophy – the potential benefits of stem cell therapy offered a small ray of hope in an otherwise bleak scenario. XCell didn’t claim they would cure my condition – but would provide me with the latest in regenerative technology. I’m confident I made the right choice.
While initially I was hoping for immediate, dramatic results, it soon became clear that any positive effect would be of a gradual nature. That’s why I can’t be sure how the procedure has influenced my overall condition – no more than I can predict what I’d be like today had I not undergone the treatment. Simply stated, in some areas I’ve improved – in others I haven’t.
There’s another aspect of this entire procedure that has to be taken into account. Due to a longtime low blood count, the number of stem cells taken from my bone marrow was also low - 700 thousand versus the normal 2 million or more. If my results don’t meet expectations – that deficiency might be the cause (XCell told me of this before the procedure).
To those of you trying to decide whether stem cell therapy is right for you – I hope I’ve provided a helpful, firsthand account of what the treatment actually involves. I plan to continue these posts, but on a monthly rather than bi-weekly basis. I’m still confident that stem cell technology will eventually unlock the mystery of this debilitating disease and allow all of us to enjoy long and active lives.
Good luck to each of you. Don’t hesitate to contact me if I can answer any other questions.
Saturday, March 6, 2010
Post 22 - Twenty-four weeks after treatment
Another two weeks have sped by as I approach the six-month milestone of my stem cell treatment at the XCell Center. Nothing noteworthy has occurred during these last two weeks but I would like to make an observation.
In Post 19 – I mentioned how my voice improved (stronger, clearer, etc.) after presenting a weekly class in an Elderhostel-type setting. Based on that, I speculated that continued exercise of any type might just help the body slow the progression of this disease. I bring this up again because now that my class is over and more than a week has gone by – I have noticed that my voice is less “agile” than it was while still teaching. It seems a little weaker and I’ve already experienced more “throat-clearing” episodes.
What’s my point? The saying “use it or lose it” may especially apply to those of us with MSA. The longer we’re able to challenge our bodies (and voices) with safe, beneficial exercise, the longer we’ll be able to experience active lifestyles. So, if you’re anywhere near my home here in southwest Florida and you hear sounds similar to a trapped animal – don’t be alarmed – it’s just me singing along with Elvis.
I’ll be back in two weeks with a summary of my entire XCell experience at the six-month mark.
In Post 19 – I mentioned how my voice improved (stronger, clearer, etc.) after presenting a weekly class in an Elderhostel-type setting. Based on that, I speculated that continued exercise of any type might just help the body slow the progression of this disease. I bring this up again because now that my class is over and more than a week has gone by – I have noticed that my voice is less “agile” than it was while still teaching. It seems a little weaker and I’ve already experienced more “throat-clearing” episodes.
What’s my point? The saying “use it or lose it” may especially apply to those of us with MSA. The longer we’re able to challenge our bodies (and voices) with safe, beneficial exercise, the longer we’ll be able to experience active lifestyles. So, if you’re anywhere near my home here in southwest Florida and you hear sounds similar to a trapped animal – don’t be alarmed – it’s just me singing along with Elvis.
I’ll be back in two weeks with a summary of my entire XCell experience at the six-month mark.
Saturday, February 20, 2010
Post 21 - Twenty-two weeks after treatment
Time really does fly! I can’t believe it’s been two weeks since my last entry and 22 weeks since my stem cell treatment at the XCell Center. I guess the rapid passing of time is a good thing because it means I’m staying active and involved instead of sitting around feeling sorry for myself.
The little improvements keep coming. The orthostatic hypotension (lightheadedness upon standing) has really lessened, as has the former big drop in blood pressure after standing. My pressure used to regularly drop 30 or more points where now it’s a 20 point average drop or less. Afternoon fatigue is also a bit less frequent - don’t need to take a nap every day. If I could only sleep a little longer at night, I think the energy level would really improve (I’m averaging 5-6 hours each night). Happily, my voice remains strong – got thru another 4- hour teaching session this week with no problem. Gait is no worse – still need a cane to guard against falls.
I’m pleased with what can best be described a “modest” improvement in my overall condition since the treatment. No spectacular change – just a general feeling that perhaps the stem cells are finally taking hold. Four more weeks until I reach the six month mark.
Hopefully, more progress to report in two weeks.
The little improvements keep coming. The orthostatic hypotension (lightheadedness upon standing) has really lessened, as has the former big drop in blood pressure after standing. My pressure used to regularly drop 30 or more points where now it’s a 20 point average drop or less. Afternoon fatigue is also a bit less frequent - don’t need to take a nap every day. If I could only sleep a little longer at night, I think the energy level would really improve (I’m averaging 5-6 hours each night). Happily, my voice remains strong – got thru another 4- hour teaching session this week with no problem. Gait is no worse – still need a cane to guard against falls.
I’m pleased with what can best be described a “modest” improvement in my overall condition since the treatment. No spectacular change – just a general feeling that perhaps the stem cells are finally taking hold. Four more weeks until I reach the six month mark.
Hopefully, more progress to report in two weeks.
Saturday, February 6, 2010
Post 20 - Twenty weeks after treatment
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.
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.
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
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