Holidays are such an exciting time of year. Families gather, friends drop by, everyone eats too much, and despite being serious grownups, we still hope Santa has something special in his bag for us. I must have been a very good boy this year, because Santa came through with some great stuff, like an amazing Apple iPad and a small, self contained fish tank to continue the hobby I’ve had since childhood.
There was one Holiday surprise, however, that was not only unexpected, but definitely unwelcomed. A few days before Christmas, I was in our kitchen having a pleasant conversation with our youngest daughter, Lee, who was visiting from NYC. I noticed I had a strange headache which came on very quickly, wrapped sharply around the entire head and, after a short while, completely vanished. Next, in the middle of the conversation, I suddenly began to slur my speech and lose the ability to articulate my words. In a few seconds, I had become basically unintelligible. No pain involved, just some vision disturbance (blurriness, difficulty focusing). This situation lasted for about twenty very anxious minutes until most of my speech returned and my vision cleared.
Fortunately it was a business day so everything was in place for my family doctor to order a CAT scan and carotid artery scan within a few hours of the event. Shortly after the tests, his office called to tell me the scans were both normal and I should see the doctor in a week. That visit was yesterday when the doctor revealed I probably had a TIA or mini-stroke. These TIA’s don’t always leave evidence behind so his opinion is based on an evaluation of the symptoms and experience with other patients.
If that diagnosis is correct, I believe this wasn’t my first TIA episode. About a week earlier we joined our friends for a few days at DisneyWorld. At breakfast the first morning I experienced the same type of sharp and sudden, whole-head pain with visual disturbance. My speech, however, was no worse than usual. That episode lasted about twenty minutes, as well.
My doctor said something yesterday that really surprised me. I assumed these TIAs were somehow related to my overall MSA condition. Not likely. In MSA, the brain sends out faulty signals causing problems with balance, speaking, swallowing etc. A TIA is most often caused by either a ruptured brain blood vessel, or a piece of plaque that has broken loose from a blood vessel wall. I fit in the second category. Thank goodness for small favors. Unfortunately, experience has shown that once TIAs start, they’re likely to continue, although it’s impossible to predict their severity. So, the New Year shapes up be more interesting than ever.
Speaking of the New Year – may 2011 bring health and happiness to you all.
Finally, I plan to keep this blog going for as long as I’m able or while I have something meaningful to say. Thanks very much for your interest, kind words, and prayers.
Wednesday, December 29, 2010
Wednesday, November 24, 2010
Post 31 - A Neurologist's Opinion of Stem Cell Therapy
During the lengthy interview process with my new neurologist, I mentioned how I underwent stem cell therapy at the X-Cell Center in September of 2009. The physician, a specialist whose practice is limited to the treatment of Parkinson’s disease and other diseases of the autonomic nervous system – like MSA – made the following comment: “While stem cell therapy may eventually be of value in treating nervous system disorders. I don’t know of a single case where it has stopped or reversed these diseases. Until more research is done on the effectiveness of stem cell therapy – tell your fellow MSA patients to save their money.”
No beating around the bush here. That’s what I like about this new doctor – he lets you know what his opinion is. Do I agree with him? It’s hard to say. I do know that my condition stayed the same (plateaued) for nearly a year after the treatment. Was that due to the therapy or would it have happened anyway?
Would I do it again? Probably yes. If not, I’d always wonder if stem cell treatment was the answer to this “miserable disease.”
No beating around the bush here. That’s what I like about this new doctor – he lets you know what his opinion is. Do I agree with him? It’s hard to say. I do know that my condition stayed the same (plateaued) for nearly a year after the treatment. Was that due to the therapy or would it have happened anyway?
Would I do it again? Probably yes. If not, I’d always wonder if stem cell treatment was the answer to this “miserable disease.”
Post 30 - New Doctor/New Plan
It turns out that the decision to donate my brain for research has produced some interesting and positive side effects. While completing the extensive donation application, I reached a section asking for information about my treating physicians. After listing information on my family doctor, who I see every 3 months, I was about to identify my neurologist when it occurred to me that I hadn’t seen him since 2008 and perhaps it was time for a follow-up visit. It came as quite a surprise to learn that he is no longer practicing and in fact has left the area. Time to search for a new neurologist.
Now that I know a lot more about MSA than I did in 2008, my search centered on neurologists who specialize in diseases of the autonomic nervous system. Fortunately, I found a local doctor whose practice is limited to Parkinson’s disease and other movement disorders. My first office visit was certainly thorough; over two hours of interview, tests, and treatment suggestions. For the first time in this entire ordeal, I found a doctor who went beyond the usual “we’ll treat the symptoms of MSA as they arise” to “let’s do something to slow the progress of this miserable disease.”
First, he arranged for a speech therapist to evaluate me and develop a plan of action to strengthen my voice and articulation but more importantly to prevent entry of food or drink into my lungs which is common for MSA patients causing aspiration pneumonia. That evaluation included a swallowing exam which used a fluoroscope to watch how I swallowed certain types of food and beverage. Starting December 1, I will see the voice therapist twice a week for 6 weeks.
Second, I am awaiting a visit from an occupational therapist who will inspect my home and suggest ways I can install or improve safety features for everyday living.
And finally, the doctor prescribed a new medication, Florinef, which should help control those 30 point drops in blood pressure and the dizziness I feel when standing up.
Needless to say, I am very pleased with this new treatment focus. I really believe that between the positive approach of this new neurologist and care and concern of my family physician – I have a team that will help me combat the debilitating effects of this “miserable disease.”
Now that I know a lot more about MSA than I did in 2008, my search centered on neurologists who specialize in diseases of the autonomic nervous system. Fortunately, I found a local doctor whose practice is limited to Parkinson’s disease and other movement disorders. My first office visit was certainly thorough; over two hours of interview, tests, and treatment suggestions. For the first time in this entire ordeal, I found a doctor who went beyond the usual “we’ll treat the symptoms of MSA as they arise” to “let’s do something to slow the progress of this miserable disease.”
First, he arranged for a speech therapist to evaluate me and develop a plan of action to strengthen my voice and articulation but more importantly to prevent entry of food or drink into my lungs which is common for MSA patients causing aspiration pneumonia. That evaluation included a swallowing exam which used a fluoroscope to watch how I swallowed certain types of food and beverage. Starting December 1, I will see the voice therapist twice a week for 6 weeks.
Second, I am awaiting a visit from an occupational therapist who will inspect my home and suggest ways I can install or improve safety features for everyday living.
And finally, the doctor prescribed a new medication, Florinef, which should help control those 30 point drops in blood pressure and the dizziness I feel when standing up.
Needless to say, I am very pleased with this new treatment focus. I really believe that between the positive approach of this new neurologist and care and concern of my family physician – I have a team that will help me combat the debilitating effects of this “miserable disease.”
Saturday, October 23, 2010
Post 29 - If I Only Had A Brain
Anyone familiar with classic movie trivia recognizes the title of this post as a take-off on the request of the Scarecrow for the Wizard of Oz to grant him a brain. Like him, I’d sure welcome the opportunity to swap my somewhat defective model for a new or gently used one. Then again, with my luck I’d probably get the executed criminal’s brain from the movie Young Frankenstein (remember Abby Normal?) so I’d better be careful what I wish for.
The reason this blog entry mentions the brain is because this past week I set into motion the donation of my brain to the Brain Endowment Bank at the University of Miami. I did this because it seems that a definite diagnosis of MSA can only be reached after a microscopic examination of brain tissue. Such an examination will hopefully answer two important questions. First, was the original diagnosis of MSA accurate or was my condition due to one of the several diseases that share some of the same symptoms as MSA? And second, if the disease wasn’t MSA, was it a genetic condition that my daughters or granddaughter should know about for future treatment options, if necessary?
I suppose something else prompted me to make this decision. I’d really like to think that there’s a part of me that may actually help medical researchers develop an effective treatment or even cure for MSA or related conditions. What a great legacy that would be.
For more information about the Brain Endowment Bank go to: http://brainbank.med.miami.edu/#
The reason this blog entry mentions the brain is because this past week I set into motion the donation of my brain to the Brain Endowment Bank at the University of Miami. I did this because it seems that a definite diagnosis of MSA can only be reached after a microscopic examination of brain tissue. Such an examination will hopefully answer two important questions. First, was the original diagnosis of MSA accurate or was my condition due to one of the several diseases that share some of the same symptoms as MSA? And second, if the disease wasn’t MSA, was it a genetic condition that my daughters or granddaughter should know about for future treatment options, if necessary?
I suppose something else prompted me to make this decision. I’d really like to think that there’s a part of me that may actually help medical researchers develop an effective treatment or even cure for MSA or related conditions. What a great legacy that would be.
For more information about the Brain Endowment Bank go to: http://brainbank.med.miami.edu/#
Wednesday, September 15, 2010
Post 28 - One-Year Anniversary
It’s exactly a year since I traveled to Cologne, Germany and underwent stem cell therapy at the X-Cell Center for Regenerative Medicine. Earlier entries on this blog have described how decisions were made, what the process involved, and what, if any, benefit was obtained. I’ll repeat here I have no regrets I went thru the therapy – either financially or emotionally. I would do it again “in a heartbeat.” Sure I’m disappointed the results weren’t more dramatic or long-lasting, but that may have been due to the low count of stem cells obtainable from my bone marrow. I do think the therapy may have helped me “plateau” for almost a year before further decline.
I also said in an earlier entry that I would speak candidly about my experience with the X-Cell Center. My strongest criticism at this point involves the X-Cell Center’s need to improve their “customer relations,” especially post-treatment. To date, I have received just two messages from X-Cell since the treatment; one was an automated Christmas message, while the other was a simplistic survey seeking my input about any after-effects the treatment may have caused. The survey, unfortunately, was directed to someone suffering from multiple sclerosis – not MSA. I noted this in my return correspondence, which was never acknowledged. X-Cell needs to pay more attention to follow-up patient studies, surveys and research. By doing so, they would help dispel comments alleging they’re just medical opportunists capitalizing on the fears of desperate clients.
Now for another issue I call The Exercise Dilemma. In Post #26, I mentioned my decision to begin an exercise program with the goal of warding off or delaying the muscle atrophy that accompanies MSA. I described the fully-equipped fitness center at our condo and how I would begin a program to keep up my muscle tone and general wellness. The fitness center is equipped with treadmills, stationary bikes, elliptical machines, and the usual array of torturous devices. I chose to begin my efforts with some time on the treadmill, alternating on the stationary bike, and interspersing a few reps each day on the weight bearing machines.
The treadmill went fine, as did the reps on the other machines. I was a little achy and tired afterward, but that was to be expected. What I didn’t expect was my reaction to 15 minutes on the stationary bike a few days later. When I finished and tried to walk to one of the other machines I found my legs had turned to rubber. I could barely stay standing and really needed my walker to make it back to the condo. It’s taken a few days of rest to recover. In the future, I’m going to follow my daughter’s advice and emphasize the weight-bearing machines to slowly build up strength, rather than machines that stress cardio exercise, like the stationary bike. With any luck, I’ll eventually get into shape like Gerry N., my fellow MSA-traveler here in SW Florida, or maybe even like the envy of everyone in New Bern, NC – my former YMCA partner, Gene D.
I’ll be back in a month or so – if the exercise doesn’t do me in first.
I also said in an earlier entry that I would speak candidly about my experience with the X-Cell Center. My strongest criticism at this point involves the X-Cell Center’s need to improve their “customer relations,” especially post-treatment. To date, I have received just two messages from X-Cell since the treatment; one was an automated Christmas message, while the other was a simplistic survey seeking my input about any after-effects the treatment may have caused. The survey, unfortunately, was directed to someone suffering from multiple sclerosis – not MSA. I noted this in my return correspondence, which was never acknowledged. X-Cell needs to pay more attention to follow-up patient studies, surveys and research. By doing so, they would help dispel comments alleging they’re just medical opportunists capitalizing on the fears of desperate clients.
Now for another issue I call The Exercise Dilemma. In Post #26, I mentioned my decision to begin an exercise program with the goal of warding off or delaying the muscle atrophy that accompanies MSA. I described the fully-equipped fitness center at our condo and how I would begin a program to keep up my muscle tone and general wellness. The fitness center is equipped with treadmills, stationary bikes, elliptical machines, and the usual array of torturous devices. I chose to begin my efforts with some time on the treadmill, alternating on the stationary bike, and interspersing a few reps each day on the weight bearing machines.
The treadmill went fine, as did the reps on the other machines. I was a little achy and tired afterward, but that was to be expected. What I didn’t expect was my reaction to 15 minutes on the stationary bike a few days later. When I finished and tried to walk to one of the other machines I found my legs had turned to rubber. I could barely stay standing and really needed my walker to make it back to the condo. It’s taken a few days of rest to recover. In the future, I’m going to follow my daughter’s advice and emphasize the weight-bearing machines to slowly build up strength, rather than machines that stress cardio exercise, like the stationary bike. With any luck, I’ll eventually get into shape like Gerry N., my fellow MSA-traveler here in SW Florida, or maybe even like the envy of everyone in New Bern, NC – my former YMCA partner, Gene D.
I’ll be back in a month or so – if the exercise doesn’t do me in first.
Monday, August 2, 2010
Post 27 - Two Promising Developments
Published reports this week revealed two significant developments, one with stem cell implications, that may have a positive impact on MSA sufferers. In the first, published in the July 29 edition of Circulation Research (American Heart Association), researchers at the University of Miami reported injecting stem cells directly into the hearts of pigs damaged by heart attacks. Within two months, researchers said, the stem cells made the pigs’ hearts, “good as new.” One researcher said within a decade similar therapy might be available for other organs, including the brain. In the second study, published in the latest edition of Nature (thanks, Vic), researchers have found a molecule that causes nerve cell death in the brain that sparks Parkinson’s – and hope they can soon stop it in its tracks. Since Parkinson’s and MSA may share underlying causes, it is hoped advances found in this research can be used to combat the nerve malfunction associated with MSA.
I am particularly heartened by the stem cell research from the first study and the dramatic results it had on diseased pig hearts. As mentioned in this blog several times before – I firmly believe stem cell research is on the verge of remarkable regenerative breakthroughs which will eventually conquer the devastation caused by MSA. Let’s hope meaningful research like the two studies noted here continue to make headlines until that cure is developed.
On another matter, I had a tough decision to make this week. I was asked whether I wanted to teach my American Presidents/First Ladies program again this fall and winter. Because my overall condition continues to deteriorate – in particular my mobility and my vocal dexterity – I felt it wouldn’t be fair to commit now and then need to cancel when classes begin. So I declined. I really hate this disease and how it continues to steal away so many of life’s little pleasures.
Added 9/1/2010 - Another promising development - Today’s newspaper carried the following article: “Author J.K. Rowling (Harry Potter series) has given 10 million pounds ($15.4 million US) to set up a center to research multiple sclerosis, the disease that killed her mother. The Anne Rowling Regenerative Neurology Clinic, based at the University of Edinburgh in Scotland, will also study other degenerative neurological conditions. Rowling said she hopes the clinic will become a world center for excellence in the field of regenerative neurology.”
Kudos to Ms Rowling for this remarkable act of philanthropy. In my humble opinion, regenerative medicine holds the key to unlock the mystery of MSA.
I am particularly heartened by the stem cell research from the first study and the dramatic results it had on diseased pig hearts. As mentioned in this blog several times before – I firmly believe stem cell research is on the verge of remarkable regenerative breakthroughs which will eventually conquer the devastation caused by MSA. Let’s hope meaningful research like the two studies noted here continue to make headlines until that cure is developed.
On another matter, I had a tough decision to make this week. I was asked whether I wanted to teach my American Presidents/First Ladies program again this fall and winter. Because my overall condition continues to deteriorate – in particular my mobility and my vocal dexterity – I felt it wouldn’t be fair to commit now and then need to cancel when classes begin. So I declined. I really hate this disease and how it continues to steal away so many of life’s little pleasures.
Added 9/1/2010 - Another promising development - Today’s newspaper carried the following article: “Author J.K. Rowling (Harry Potter series) has given 10 million pounds ($15.4 million US) to set up a center to research multiple sclerosis, the disease that killed her mother. The Anne Rowling Regenerative Neurology Clinic, based at the University of Edinburgh in Scotland, will also study other degenerative neurological conditions. Rowling said she hopes the clinic will become a world center for excellence in the field of regenerative neurology.”
Kudos to Ms Rowling for this remarkable act of philanthropy. In my humble opinion, regenerative medicine holds the key to unlock the mystery of MSA.
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.
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.
Monday, May 17, 2010
Post 25 - Eight months after treatment
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.
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.
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
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.
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