Would any of you mind very much if we cancelled 2011 and skipped right to 2012? I ask because if January is any indication of how the rest of the year will turn out, I don’t think I can handle eleven more months of similar excitement.
I started off January wondering if a stroke was looming after a couple of TIA-like episodes had my family doctor guessing some blood vessel debris had broken loose and caused a momentary blockage. However, a visit to my neurologist a few days later drew a different and unexpected diagnosis; a cluster headache bringing about symptoms that mimic a TIA – but doesn’t have anything to do with an actual stroke.
Things were pretty uneventful until the 21st when the next adventure began. Seems like I couldn’t, as my father used to say, “pass water.” After two unsuccessful days of waiting for nature to solve the problem, I made a late night visit to the local emergency room for some very welcome relief. They even presented me with a gift – my very own Foley catheter which I have to leave in place for several more days until my urologist returns from vacation.
Maybe I’ll wait to see how February turns out before pushing to cancel out the rest of the year.
Saturday, January 29, 2011
Wednesday, December 29, 2010
Post 32 - An Interesting Holiday Surprise
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.
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, 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.
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