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.”
Wednesday, November 24, 2010
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.
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