Saturday, December 15, 2012
Tragedy
Saturday, November 17, 2012
A Medical & Research Synopsis - Part 1
One of the posts here that continues to get the most hits is the one I did on stem cell therapy. That combined with the fact that I still get emails and questions from patients and caregivers with this and other alphabet diseases has led me to do this post.
I see by the posts on the MSA Facebook pages and other "gathering places" online that the isolation that my wife and I felt when she got her diagnosis is still prevalent in patients and caregivers. The alphabet diseases of the brain are still rare enough that it is still a surprise to find a doctor or nurse that has knowledge of the diseases and their symptoms.
I am going to attempt to outline the what I have found as far as medical knowledge of, pathology of, progression of, and ultimately potential treatments of MSA and related alphabet diseases. I am going to do this in parts, as I have already worked on this one for an hour and barely scratched the surface.
I want to mention again - I am not a medical practitioner of any type. I have a long standing interest in medicine dating from my childhood combined with a voracious appetite for reading and accumulating knowledge. With my wife's diagnosis of and ultimate death from complications of MSA, I have done even more research into diseases of the human brain concentrating on scientific and medical breakthroughs in this area. So, although I am going to be as accurate and specific as I can be, this is not intended to guide anyone in the treatment, diagnosis, or prognosis of a specific disease. I will share some of my conjecture and opinions but I will identify them accordingly. I also do not intend to or mean to present this as a scientific paper. I will present this as simply as I can (and as I have to, not being an expert or trained in this area). I am sure I will make mistakes. Do not take anything said here as "gospel". Hopefully this will provide you with some seeds to start your learning process. Most of this I have gotten from the internet, some from scientific journals and textbooks, and some from doctors and researchers I have corresponded with.
A lot of breakthroughs have occurred with brain diseases in the past five to seven years. I know from personal experience, when you and/or a loved one are facing one of these diseases and find it hard to get the information you want, it seems like no one knows anything; but that is not the case.
Actually the brain itself is still very unknown territory. Doctors and scientists alike are still mystified by the things it does and the processes by which it does them. The diseases that impact the brain are still very much a mystery as well. When one does not know how something is done, figuring out why it is not being done any longer is made almost impossible! One of the "problems" facing researchers into the brain is the fact that a lot of research cannot be done on the human brain for medical and ethical reasons. You cannot dissect a brain without killing the host body. You cannot "try" different procedures on the brain for the same reasons. The human brain is so vastly complex that there is no model outside of the actual brain itself that lends itself to accurate study. Animal research has been of great help in a lot of cases, but the differences in the human brain and its functions from a lab rat's brain is much more dramatic than other systems in the body. The fact that our brain not only performs the physical control center functions of operating movements, processing information, and other animal-like processes; but contains "us", makes any attempt to understand the functions very, very difficult.
I call these diseases "alphabet diseases" for obvious reasons. They are: ALS (Amyotrophic Lateral Sclerosis), CBD (Corticobasal Degeneration), DLB (Dementia with Lewy Bodies), MSA (Multiple System Atrophy), PAF (Pure Autonomic Failure), and PSP (Progressive Supranuclear Palsy). This is not meant to be a complete list, but these all affect the brain and are identified by their initials. They are all now classified as diseases caused by irregular "clumps" of proteins. Depending upon the primary type of this protein they are classified as tauopathies or synucleinopathies. MSA is a synucleinopathy. PSP (and Alzheimer's which I did not mention) is a tauopathies. They are similar in that protein "clumps" aggregate in the brain. The difference is the type of protein that forms these "clumps" - tau or synuclein.
There has been much research into these "clumps" and some promising results in treating them, at least in vitro (or outside of the body). However, one huge question remains - are these irregular proteins the cause or are they one of the effects? It has been shown in studies that slowing the aggregation of these proteins does slow the progression of these diseases. But again, is it just working on a symptom or a cause? This is a critical question that must be answered prior to any treatments or cures.
Now is a good time to bring up one thing that keeps coming up in comments and posts I see around the web. Although the tauopathies or synucleinopathies all have similarities and most are called Parkinson's Plus diseases, the pathology of the individual diseases are quite different. As I have already pointed out, the proteins involved in these diseases are distinctly different and divide them into two classes. The areas of the brain affected by the diseases, even with similar symptoms, are different. For example MSA-P (Parkinson's type with many Parkinson's symptoms and responding to levadopa) is vastly different from Parkinson's. They way I had it explained to me was - in Parkinson's the brain stops producing dopamine. In MSA the receptors for dopamine uptake are degenerating. Compare this to a group communicating by radios. One radio will not transmit and another will not receive. The result is the same, poor or no communication. The cause is totally different and thus the "cure" would be different. I classify myself as a realistic optimist. I know that research is coming up with chemical compounds and other treatments every day that have a positive effect on one or more of these diseases. I am heartened by these results. However, I also know that a treatment or cure for one does not mean a treatment or cure for another. Any research into the brain and it's chemistry is good for all these diseases. As I stated above, there is still so much that is not known about how the brain functions and how these diseases exactly affect the brain, especially in their early stages. So, you can remain positive and be happy when you see a new drug is being tested on Parkinson's patients. But, be cautious as well. One example I will leave you with is pneumonia. Even with all our antibiotics, antiviral agents, vaccines against certain types - pneumonia still kills over 4 million people a year! A "cure" for these alphabet diseases may be a long time coming.
End part 1.
I see by the posts on the MSA Facebook pages and other "gathering places" online that the isolation that my wife and I felt when she got her diagnosis is still prevalent in patients and caregivers. The alphabet diseases of the brain are still rare enough that it is still a surprise to find a doctor or nurse that has knowledge of the diseases and their symptoms.
I am going to attempt to outline the what I have found as far as medical knowledge of, pathology of, progression of, and ultimately potential treatments of MSA and related alphabet diseases. I am going to do this in parts, as I have already worked on this one for an hour and barely scratched the surface.
I want to mention again - I am not a medical practitioner of any type. I have a long standing interest in medicine dating from my childhood combined with a voracious appetite for reading and accumulating knowledge. With my wife's diagnosis of and ultimate death from complications of MSA, I have done even more research into diseases of the human brain concentrating on scientific and medical breakthroughs in this area. So, although I am going to be as accurate and specific as I can be, this is not intended to guide anyone in the treatment, diagnosis, or prognosis of a specific disease. I will share some of my conjecture and opinions but I will identify them accordingly. I also do not intend to or mean to present this as a scientific paper. I will present this as simply as I can (and as I have to, not being an expert or trained in this area). I am sure I will make mistakes. Do not take anything said here as "gospel". Hopefully this will provide you with some seeds to start your learning process. Most of this I have gotten from the internet, some from scientific journals and textbooks, and some from doctors and researchers I have corresponded with.
A lot of breakthroughs have occurred with brain diseases in the past five to seven years. I know from personal experience, when you and/or a loved one are facing one of these diseases and find it hard to get the information you want, it seems like no one knows anything; but that is not the case.
Actually the brain itself is still very unknown territory. Doctors and scientists alike are still mystified by the things it does and the processes by which it does them. The diseases that impact the brain are still very much a mystery as well. When one does not know how something is done, figuring out why it is not being done any longer is made almost impossible! One of the "problems" facing researchers into the brain is the fact that a lot of research cannot be done on the human brain for medical and ethical reasons. You cannot dissect a brain without killing the host body. You cannot "try" different procedures on the brain for the same reasons. The human brain is so vastly complex that there is no model outside of the actual brain itself that lends itself to accurate study. Animal research has been of great help in a lot of cases, but the differences in the human brain and its functions from a lab rat's brain is much more dramatic than other systems in the body. The fact that our brain not only performs the physical control center functions of operating movements, processing information, and other animal-like processes; but contains "us", makes any attempt to understand the functions very, very difficult.
I call these diseases "alphabet diseases" for obvious reasons. They are: ALS (Amyotrophic Lateral Sclerosis), CBD (Corticobasal Degeneration), DLB (Dementia with Lewy Bodies), MSA (Multiple System Atrophy), PAF (Pure Autonomic Failure), and PSP (Progressive Supranuclear Palsy). This is not meant to be a complete list, but these all affect the brain and are identified by their initials. They are all now classified as diseases caused by irregular "clumps" of proteins. Depending upon the primary type of this protein they are classified as tauopathies or synucleinopathies. MSA is a synucleinopathy. PSP (and Alzheimer's which I did not mention) is a tauopathies. They are similar in that protein "clumps" aggregate in the brain. The difference is the type of protein that forms these "clumps" - tau or synuclein.
There has been much research into these "clumps" and some promising results in treating them, at least in vitro (or outside of the body). However, one huge question remains - are these irregular proteins the cause or are they one of the effects? It has been shown in studies that slowing the aggregation of these proteins does slow the progression of these diseases. But again, is it just working on a symptom or a cause? This is a critical question that must be answered prior to any treatments or cures.
Now is a good time to bring up one thing that keeps coming up in comments and posts I see around the web. Although the tauopathies or synucleinopathies all have similarities and most are called Parkinson's Plus diseases, the pathology of the individual diseases are quite different. As I have already pointed out, the proteins involved in these diseases are distinctly different and divide them into two classes. The areas of the brain affected by the diseases, even with similar symptoms, are different. For example MSA-P (Parkinson's type with many Parkinson's symptoms and responding to levadopa) is vastly different from Parkinson's. They way I had it explained to me was - in Parkinson's the brain stops producing dopamine. In MSA the receptors for dopamine uptake are degenerating. Compare this to a group communicating by radios. One radio will not transmit and another will not receive. The result is the same, poor or no communication. The cause is totally different and thus the "cure" would be different. I classify myself as a realistic optimist. I know that research is coming up with chemical compounds and other treatments every day that have a positive effect on one or more of these diseases. I am heartened by these results. However, I also know that a treatment or cure for one does not mean a treatment or cure for another. Any research into the brain and it's chemistry is good for all these diseases. As I stated above, there is still so much that is not known about how the brain functions and how these diseases exactly affect the brain, especially in their early stages. So, you can remain positive and be happy when you see a new drug is being tested on Parkinson's patients. But, be cautious as well. One example I will leave you with is pneumonia. Even with all our antibiotics, antiviral agents, vaccines against certain types - pneumonia still kills over 4 million people a year! A "cure" for these alphabet diseases may be a long time coming.
End part 1.
Wednesday, May 30, 2012
One Year Ago Today
I am actually writing this before I have a title, which is unusual for me. I cannot think of what to call it. Here we go.
Today is the one year "anniversary" (not a good word to describe, but...) of my wife's death. (as an aside, I have noticed no one seems to use death, or died. or dead when referring to a family member or loved one. Instead they use passed on, passed away, or some even more flowery synonym or euphemism, but that is probably a post for my other blog. My wife died. The use of a euphemism doesn't diminish the pain or the reality. If I offend anyone, go read another blog. But I digress...)
.
I have extremely mixed emotions today, none of them really good. Sadness and grief are a big part of it; but to be fair, guilt is still a large part of what I feel. You might be thinking one thing, but let me explain. Just after my wife's death (I was going to write "passing" but after the above it didn't seem real), I was wracked with guilt and remorse over some of the things I wish I had done, or said. I do not really regret many of the things I did do, thankfully; but I do have regrets. It is like the famous quotes:
Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable - Sydney J. Harris
or
When you look back on your life, you'll regret the things you didn't do more than the ones you did. - H. Jackson Brown, Jr.
My wife and I tried to DO as much as we could in the years after her diagnosis. She wanted to go on a cruise with her sister and we did, along with another one a little over a year later. Then we did another one a year and a half later with my youngest daughter. I know she would have rather have done the cruises "whole" and able to partake of more of the activities, but I also know she enjoyed them a LOT. In fact, we might have been better at doing the BIG things (like the cruises, or taking her to Florida) than the smaller things. Those smaller things are what eat at me. It is very sad for me to write this (I will with hope of catharsis), but one of the things she wanted to do was to go to a Russell Stover outlet that is about an hour from here. Now, in the scheme of things, that is not a real difficult request. But, add in the fact of a wheelchair, bathroom issues (see earlier posts), no good wheelchair access at the shopping center the outlet is located in, and my overall exhaustion for most of the time; and it seemed like a HUGE problem to me. I denied her of that trip many times over the months prior to her death. Looking back at it now, I was selfish and foolish. That two hour+ journey might have brought her immeasurable joy for a little effort. There are other regrets similar to that. None big, but that is what makes them so painful.
I wrote some emotional stuff a year ago. Somewhere in there amongst those lines are some words about "doing" and having no regrets. I implore anyone reading this to do what you can if you are faced with a grim future or diagnosis. It actually is pretty good advice for anyone, anytime. I need to heed my own advice, but the healer is always the worst patient.
I will end this with a poem. In the spirit of disclosure, this is actually a one line thing I wrote over forty years ago (before I even met my wife) that I turned into a song for her later. I will not sing for you, but here are the words: (the second verse is chilling to me as I wrote this many, many years ago)
Always will my love for you
remain inside my heart.
No matter where you go
or how long that we're apart.
The promise that I left you with
forever echos in my ears...I'll need you always.
You were gone one lonesome day
and though I'd told myself before
you'd have to leave me soon
you couldn't stay with me much more.
Still I listen for your laugh,
your smile's forever frozen in my mind...I'll need you always.
"THE" 1971 1982
I cannot envision a time that I will not miss her so very much.
RIP - Carol Condon Poole - 09/30/54 - 05/30/11
Today is the one year "anniversary" (not a good word to describe, but...) of my wife's death. (as an aside, I have noticed no one seems to use death, or died. or dead when referring to a family member or loved one. Instead they use passed on, passed away, or some even more flowery synonym or euphemism, but that is probably a post for my other blog. My wife died. The use of a euphemism doesn't diminish the pain or the reality. If I offend anyone, go read another blog. But I digress...)
.
I have extremely mixed emotions today, none of them really good. Sadness and grief are a big part of it; but to be fair, guilt is still a large part of what I feel. You might be thinking one thing, but let me explain. Just after my wife's death (I was going to write "passing" but after the above it didn't seem real), I was wracked with guilt and remorse over some of the things I wish I had done, or said. I do not really regret many of the things I did do, thankfully; but I do have regrets. It is like the famous quotes:
Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable - Sydney J. Harris
or
When you look back on your life, you'll regret the things you didn't do more than the ones you did. - H. Jackson Brown, Jr.
My wife and I tried to DO as much as we could in the years after her diagnosis. She wanted to go on a cruise with her sister and we did, along with another one a little over a year later. Then we did another one a year and a half later with my youngest daughter. I know she would have rather have done the cruises "whole" and able to partake of more of the activities, but I also know she enjoyed them a LOT. In fact, we might have been better at doing the BIG things (like the cruises, or taking her to Florida) than the smaller things. Those smaller things are what eat at me. It is very sad for me to write this (I will with hope of catharsis), but one of the things she wanted to do was to go to a Russell Stover outlet that is about an hour from here. Now, in the scheme of things, that is not a real difficult request. But, add in the fact of a wheelchair, bathroom issues (see earlier posts), no good wheelchair access at the shopping center the outlet is located in, and my overall exhaustion for most of the time; and it seemed like a HUGE problem to me. I denied her of that trip many times over the months prior to her death. Looking back at it now, I was selfish and foolish. That two hour+ journey might have brought her immeasurable joy for a little effort. There are other regrets similar to that. None big, but that is what makes them so painful.
I wrote some emotional stuff a year ago. Somewhere in there amongst those lines are some words about "doing" and having no regrets. I implore anyone reading this to do what you can if you are faced with a grim future or diagnosis. It actually is pretty good advice for anyone, anytime. I need to heed my own advice, but the healer is always the worst patient.
I will end this with a poem. In the spirit of disclosure, this is actually a one line thing I wrote over forty years ago (before I even met my wife) that I turned into a song for her later. I will not sing for you, but here are the words: (the second verse is chilling to me as I wrote this many, many years ago)
Always will my love for you
remain inside my heart.
No matter where you go
or how long that we're apart.
The promise that I left you with
forever echos in my ears...I'll need you always.
You were gone one lonesome day
and though I'd told myself before
you'd have to leave me soon
you couldn't stay with me much more.
Still I listen for your laugh,
your smile's forever frozen in my mind...I'll need you always.
"THE" 1971 1982
I cannot envision a time that I will not miss her so very much.
RIP - Carol Condon Poole - 09/30/54 - 05/30/11
Saturday, March 17, 2012
Thanks to all!
This post will actually precede the post I am referring to, but if anyone has questions just go to next post (older).
The video featuring the MSA patient has won the Neuro Film Festival. It was a runaway in numbers. For all of you that voted, THANKS! Awareness of this (and other) rare neurological disease is greatly needed. Now all the attendees of the American Academy of Neurology annual meeting will see the video. I can tell you from experience that even neurologists are not always aware of the symptoms of MSA.
On a side note, although I am glad the MSA video won; and obviously I lobbied for the result - I am saddened to an extent by the fact that there were other videos there from just as dedicated family members, patients, and caregivers about other diseases that got almost no support/votes. Although I have a personal interest in promoting MSA awareness, I know ALL neurological diseases need attention, support, and research. I wish all those afflicted with and affected by these diseases the best. May treatments and cures be found for all.
The video featuring the MSA patient has won the Neuro Film Festival. It was a runaway in numbers. For all of you that voted, THANKS! Awareness of this (and other) rare neurological disease is greatly needed. Now all the attendees of the American Academy of Neurology annual meeting will see the video. I can tell you from experience that even neurologists are not always aware of the symptoms of MSA.
On a side note, although I am glad the MSA video won; and obviously I lobbied for the result - I am saddened to an extent by the fact that there were other videos there from just as dedicated family members, patients, and caregivers about other diseases that got almost no support/votes. Although I have a personal interest in promoting MSA awareness, I know ALL neurological diseases need attention, support, and research. I wish all those afflicted with and affected by these diseases the best. May treatments and cures be found for all.
Sunday, February 12, 2012
Please Help!
As most of you know, my wife passed away last May from a rare neurological disease called MSA. One of my goals in life is to offer support to those patients, caregivers, and families affected by this rare, fatal illness. The American Academy of Neurology has a film contest each year where they pick a short film made by individuals about support for brain disease research. Entries are submitted to You Tube and a winner is selected by popular vote. The film is then shown at the American Academy of Neurology annual meeting. This would really be important to help with MSA as it is very rare and still unknown to a lot of doctors and other medical personnel. I know this from personal experience. There is a film featuring a MSA patient that is entered in the contest this year. I would ask that you register, watch, and vote for the film. Even if you do not want to vote, please go watch the film. It will show you what MSA patients like my wife, go through with this illness.
Please help make Multiple System Atrophy film #1 at the Neuro Film Festival
A film on Multiple System Atrophy has been entered in the Neuro Film Festival.
We need your help to get enough votes to make it the "Fan Favorite", this will
mean increased publicity for Multiple System Atrophy which is so desperately needed.
This is an achievable goal if we all work together.
As of February 11th the film is in first place in the voting but the second place film is
very close behind, every single vote counts.
Ask your friends to vote, post on your facebook wall and twitter accounts, get
your teenage relatives involved so all their friends will vote too. We can do
this!!!
PLEASE TAKE ACTION NOW! GO TO THIS WEBSITE AND ENTER YOUR
VOTE BEFORE MARCH 8TH.
Please follow these instructions exactly to ensure your vote is counted
Step 1: Go to Neuro Film Festival Website
http://patients.aan.com/go/about/neurofilmfestival
Step 2: click on the VOTE NOW! tab.
Step 3: Click on Register Now and enter your details
Step 4: Check you email inbox for a verification email - click on the link to
verify your registration
Step 5: Go Vote -- Go back to Neuro Film Festival Website
http://patients.aan.com/go/about/neurofilmfestival and click VOTE NOW
Step 6: Find the “Multiple System Atrophy MSA” film in the list and click on the word VOTE
Note: If you have more than one email address you may register that email and vote again.
One vote per registered email address.
Please do this and pass it on to everyone you can.
Scott
Please help make Multiple System Atrophy film #1 at the Neuro Film Festival
A film on Multiple System Atrophy has been entered in the Neuro Film Festival.
We need your help to get enough votes to make it the "Fan Favorite", this will
mean increased publicity for Multiple System Atrophy which is so desperately needed.
This is an achievable goal if we all work together.
As of February 11th the film is in first place in the voting but the second place film is
very close behind, every single vote counts.
Ask your friends to vote, post on your facebook wall and twitter accounts, get
your teenage relatives involved so all their friends will vote too. We can do
this!!!
PLEASE TAKE ACTION NOW! GO TO THIS WEBSITE AND ENTER YOUR
VOTE BEFORE MARCH 8TH.
Please follow these instructions exactly to ensure your vote is counted
Step 1: Go to Neuro Film Festival Website
http://patients.aan.com/go/about/neurofilmfestival
Step 2: click on the VOTE NOW! tab.
Step 3: Click on Register Now and enter your details
Step 4: Check you email inbox for a verification email - click on the link to
verify your registration
Step 5: Go Vote -- Go back to Neuro Film Festival Website
http://patients.aan.com/go/about/neurofilmfestival and click VOTE NOW
Step 6: Find the “Multiple System Atrophy MSA” film in the list and click on the word VOTE
Note: If you have more than one email address you may register that email and vote again.
One vote per registered email address.
Please do this and pass it on to everyone you can.
Scott
Sunday, January 22, 2012
Stem Cells - follow up
NOTE: I get a LOT of comments on this post that are essentially "commercials" for stem cell treatments. THESE WILL NOT BE PUBLISHED! I have no desire to turn this into a commercial site. If you read what I have written, I do not believe stem cell treatment is appropriate or will help with MSA.
Before I get into the topic I again want to express my astonishment over the hits this site is still getting, as well as the comments and emails I get. To say I enjoy them would be wrong, because it usually means I am "meeting" another person suffering with MSA. However, it is always good to hear from people. I am grateful when this site is mentioned as offering some support and/or solace. Please feel free to comment or contact me.
The second most read post on this site is the one I did about stem cells (fyi, #1 is the intro page) If you have not read it, here it is: http://www.livingwithasnowman.blogspot.com/2011/05/stem-cell-treatment-my-take.html. I promised a follow up. I have been doing research and have contacted many people to gather as much information as I could. I do not mean for this to be the definitive stem cell comment by any means, but I do hope it will provide some support for those looking at the treatments. At the end I have placed some links you may find helpful in your own journey.
I have been argued with over my first post and the conclusions I came to that stem cell treatments for MSA, at least at this time, are a waste of money. I am sad to say I can find nothing to change my opinion at this writing. Stem cell treatment for MSA (or other alphabet diseases, especially of the CNS) is not proven to offer any lasting medical improvement, and has caused harm to some patients with complications such as infections, immune system responses (rejection), etc. There are inherent dangers with any medical procedure. Even a simple vaccination injection can be very dangerous in certain cases due to allergic reactions. It is rare, but it happens. To pay tens of thousands of dollars for an unproven, potentially deadly procedure with no proven record of safety or success is not a good bet, at least in my opinion.
I understand the allure of stem cell treatment (or other treatments with promises of curing or reversing these terrible diseases that standard medicine cannot help with). To accept that there are diseases that modern medicine cannot treat, much less cure, is very hard to do. My wife and I talked about stem cell treatments and other alternatives a lot. That is where I first became aware of the problems and dangers. I did hours and hours of research. I "spoke" to (either in person, on the phone, by email, or by mail) anyone that I could get up with that I thought had any knowledge of stem cell treatments. I mentioned in a post I did earlier, I even got two Chinese "doctors" (in quotes because one of them told me he was not a medical doctor, the clinic just referred to all their clinicians as "doctor") affiliated with a stem cell treatment center in China to tell me they would not use the treatments on their loved ones - it was too dangerous and did not work.
I do believe stem cell treatment offers a great resource for the treatment and possible cure of many, many diseases. I also believe we are many, many years away from this. I also believe that the treatment of CNS alphabet diseases may be the last frontier for these treatments, outside of spinal cord injury (there is a lot of promise there). Due to the fact that most of these alphabet diseases are not understood from a pathology or systemic standpoint, treatment is a long way off. The good news? A long way off in today's world can be much quicker than in the past. Advances in medical science are happening every day. There are discoveries being made as I write this. Maybe one of them will be able to offer treatment and/or further understanding of these diseases. For now my advice would be to stay away and save your money. If you are offered a chance to engage in stem cell research from an accredited research facility, go for it. They are probably not to the stage of a cure, but you may advance the field of study and treatment.
I promised links. Rather than clog things up with a lot of them, I have two. The first is for the ISSCR, the International Society for Stem Cell Research. They have a great site with a lot of information about what is going on in the stem cell research world. You can find their site here - http://www.closerlookatstemcells.org/. They also have many links there for you to continue your research. The second link is one I think I shared before. It is a link to a site that offers all the approved medical trials and studies going on in the U.S. It covers all diseases, but can be searched by specific disease. I have the link to the MSA and related studies. The link is - http://clinicaltrials.gov/ct2/results?term=Multiple+System+Atrophy&recr=Open .
As always, have the best day you can have.
Before I get into the topic I again want to express my astonishment over the hits this site is still getting, as well as the comments and emails I get. To say I enjoy them would be wrong, because it usually means I am "meeting" another person suffering with MSA. However, it is always good to hear from people. I am grateful when this site is mentioned as offering some support and/or solace. Please feel free to comment or contact me.
The second most read post on this site is the one I did about stem cells (fyi, #1 is the intro page) If you have not read it, here it is: http://www.livingwithasnowman.blogspot.com/2011/05/stem-cell-treatment-my-take.html. I promised a follow up. I have been doing research and have contacted many people to gather as much information as I could. I do not mean for this to be the definitive stem cell comment by any means, but I do hope it will provide some support for those looking at the treatments. At the end I have placed some links you may find helpful in your own journey.
I have been argued with over my first post and the conclusions I came to that stem cell treatments for MSA, at least at this time, are a waste of money. I am sad to say I can find nothing to change my opinion at this writing. Stem cell treatment for MSA (or other alphabet diseases, especially of the CNS) is not proven to offer any lasting medical improvement, and has caused harm to some patients with complications such as infections, immune system responses (rejection), etc. There are inherent dangers with any medical procedure. Even a simple vaccination injection can be very dangerous in certain cases due to allergic reactions. It is rare, but it happens. To pay tens of thousands of dollars for an unproven, potentially deadly procedure with no proven record of safety or success is not a good bet, at least in my opinion.
I understand the allure of stem cell treatment (or other treatments with promises of curing or reversing these terrible diseases that standard medicine cannot help with). To accept that there are diseases that modern medicine cannot treat, much less cure, is very hard to do. My wife and I talked about stem cell treatments and other alternatives a lot. That is where I first became aware of the problems and dangers. I did hours and hours of research. I "spoke" to (either in person, on the phone, by email, or by mail) anyone that I could get up with that I thought had any knowledge of stem cell treatments. I mentioned in a post I did earlier, I even got two Chinese "doctors" (in quotes because one of them told me he was not a medical doctor, the clinic just referred to all their clinicians as "doctor") affiliated with a stem cell treatment center in China to tell me they would not use the treatments on their loved ones - it was too dangerous and did not work.
I do believe stem cell treatment offers a great resource for the treatment and possible cure of many, many diseases. I also believe we are many, many years away from this. I also believe that the treatment of CNS alphabet diseases may be the last frontier for these treatments, outside of spinal cord injury (there is a lot of promise there). Due to the fact that most of these alphabet diseases are not understood from a pathology or systemic standpoint, treatment is a long way off. The good news? A long way off in today's world can be much quicker than in the past. Advances in medical science are happening every day. There are discoveries being made as I write this. Maybe one of them will be able to offer treatment and/or further understanding of these diseases. For now my advice would be to stay away and save your money. If you are offered a chance to engage in stem cell research from an accredited research facility, go for it. They are probably not to the stage of a cure, but you may advance the field of study and treatment.
I promised links. Rather than clog things up with a lot of them, I have two. The first is for the ISSCR, the International Society for Stem Cell Research. They have a great site with a lot of information about what is going on in the stem cell research world. You can find their site here - http://www.closerlookatstemcells.org/. They also have many links there for you to continue your research. The second link is one I think I shared before. It is a link to a site that offers all the approved medical trials and studies going on in the U.S. It covers all diseases, but can be searched by specific disease. I have the link to the MSA and related studies. The link is - http://clinicaltrials.gov/ct2/results?term=Multiple+System+Atrophy&recr=Open .
As always, have the best day you can have.
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