This blog with commentary is now available in a book of the same title. It is available in the Kindle store if you are looking for an e-book. FYI, there is a Kindle app available for almost every tablet, phone, or computer if you so desire. The book is only $3.99 and a portion of any profit will go towards MSA research.
If you prefer a "real" book, by the time you read this it should be available on Amazon for $19.99.
Please consider purchasing one, even if it is just to make a donation to MSA research! Let all your friends and family know as well!!
thanks,
Scott
Showing posts with label gumbypoole. Show all posts
Showing posts with label gumbypoole. Show all posts
Saturday, April 14, 2018
Saturday, May 31, 2014
Battleground
Battleground
We've all fought so many battles
We tend to count the ones we lost.
Trying to build upon our failures
Never adding up the cost.
The big ones seem to be remembered
Fallen soldiers tossed aside.
Forgetting all the minor battles
We should be counting up with pride.
Good days adding to the memories
And the bad days taking toll.
We need to light our way from darkness
Live our lives, not just play a role.
Happiness sure can be elusive
Especially the perfect kind.
We've got to grab onto the goodness
And capture it in our mind.
“THE”
5/31/14
Tuesday, April 15, 2014
WHY MSA? A theme song
This "song" should be recognizable to most of you. I used to sing the "Why MSA..." part to my wife. I am offering it to the MSA community for whatever.
Hey man, please come gather around.
(I said) Hey girl, come and sit right down.
(I said) All you need to hear what I've found,
There's no cure yet, but we're trying.
Hey man, there's a disease that's around .
(I said) Hey girl, it is tearing us down.
We need you to join us, learn about MSA
And help us to spread the word now.
That's why we're asking you, Why MSA?
We want to know now, Why MSA?
It will knock you down, turn your life around,
You won't be able to do what you feel...
Hey man, are you listening to me?
(I said) Hey girl, I need you really to see
(I said) Hey all, it destroys all your dreams.
But you got to know this one thing!
No one can do it all by themselves.
(I said) Hey man, help us put disease on the shelves.
So learn it, ask Why MSA?
We need your help today.
That's why we're asking you Why MSA?
We want to know now, Why MSA?
Hey man, please come gather around.
(I said) Hey girl, come and sit right down.
(I said) All you need to hear what I've found,
There's no cure yet, but we're trying.
Hey man, there's a disease that's around .
(I said) Hey girl, it is tearing us down.
We need you to join us, learn about MSA
And help us to spread the word now.
That's why we're asking you, Why MSA?
We want to know now, Why MSA?
It will knock you down, turn your life around,
You won't be able to do what you feel...
Hey man, are you listening to me?
(I said) Hey girl, I need you really to see
(I said) Hey all, it destroys all your dreams.
But you got to know this one thing!
No one can do it all by themselves.
(I said) Hey man, help us put disease on the shelves.
So learn it, ask Why MSA?
We need your help today.
That's why we're asking you Why MSA?
We want to know now, Why MSA?
Saturday, February 16, 2013
I have to tell Carol about that
It has been over 20 months since the ambulance came and took my wife away for the last time. Even after that long, it amazes me that I still see or hear things that I think to myself - "oh man, I have to tell Carol (my wife's name) about that. A former boss, friend, and somewhat of a mentor of mine passed away late last year. I just heard about it within the past weeks. The first thing I thought of when I heard was telling my wife, and how amazed she would be.
My wife was from South Florida (by way of the Pittsburgh area, but from age 4 a Florida girl), the Ft. Lauderdale area to be exact. We made many, many trips from N.C. (where I am from, and where we lived as a couple for most of our marriage) to the Ft. Lauderdale area over the years. Then as her mother and a daughter of ours moved to Central Florida - to I-4 and to the Orlando area. I still make the trips to Central Florida quite often. I am writing this from that area, already my second trip this year.
The reason I bring that up is I am very familiar with the wonderful "Main Street East Coast" - I-95, at least from Richmond, Va to Miami. The first trip I took to Florida as a teenager was before most of I-95 was there. As my wife and I made the trips over the years we saw more and more of the highway being completed until it was done (not counting all construction - that never ends!). I know a lot of the exits, a lot of the scenery, a lot of the attractions. I have regular exits that I frequent on my travels. So, when I see something new and interesting it stands out. But as on today's trip, one of my first thoughts is - "I have to tell Carol about that."
So, Carol - you should have seen what I saw! And, David Moore died in late November.
I guess I'll just keep "telling" her. Miss you.
My wife was from South Florida (by way of the Pittsburgh area, but from age 4 a Florida girl), the Ft. Lauderdale area to be exact. We made many, many trips from N.C. (where I am from, and where we lived as a couple for most of our marriage) to the Ft. Lauderdale area over the years. Then as her mother and a daughter of ours moved to Central Florida - to I-4 and to the Orlando area. I still make the trips to Central Florida quite often. I am writing this from that area, already my second trip this year.
The reason I bring that up is I am very familiar with the wonderful "Main Street East Coast" - I-95, at least from Richmond, Va to Miami. The first trip I took to Florida as a teenager was before most of I-95 was there. As my wife and I made the trips over the years we saw more and more of the highway being completed until it was done (not counting all construction - that never ends!). I know a lot of the exits, a lot of the scenery, a lot of the attractions. I have regular exits that I frequent on my travels. So, when I see something new and interesting it stands out. But as on today's trip, one of my first thoughts is - "I have to tell Carol about that."
So, Carol - you should have seen what I saw! And, David Moore died in late November.
I guess I'll just keep "telling" her. Miss you.
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.
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, 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.
Sunday, December 25, 2011
What would you do...?
What would you do differently today if you knew it was your last Christmas? Or the last Christmas of a loved one? A good friend?
Even though my wife had a terminal illness, we did not think last Christmas was our last together. We were just weeks back from a cruise, she was feeling pretty good (for her). Who knew?
So, who would you call? Who would you visit? Who would you hug? Who would you kiss?
What would you do? What would you eat, say, buy, sell, give away, hold, or ignore?
We don't know, do we? DO IT!!
Merry Christmas!
Even though my wife had a terminal illness, we did not think last Christmas was our last together. We were just weeks back from a cruise, she was feeling pretty good (for her). Who knew?
So, who would you call? Who would you visit? Who would you hug? Who would you kiss?
What would you do? What would you eat, say, buy, sell, give away, hold, or ignore?
We don't know, do we? DO IT!!
Merry Christmas!
Sunday, December 18, 2011
Happy Holidays, Merry Christmas, and Happy New Year!!
Well, one week from now, as I am writing this, the first Christmas without my wife in 38 years will be over. I will admit I am not looking forward to it (except for the grandkids). Christmas, heck holidays in general, was/were my wife's "thing". We shall see what happens.
I wanted to take this time to wish anyone affected by or afflicted with this disease a very Merry Christmas, Happy Holidays, and a very Happy New Year. To family members that are dealing with or caring for patients and in memory of those that have lost their battle with MSA as well. I have a saying that I have shared with people and try to live by - Have as good a day as you can have.
I am still getting a phenomenal number of hits to this site. Not a week has gone by that I have not gotten multiple emails from people with MSA or family members of patients that are desperately looking for some consolation, advice, or just someone to listen. I answer every one gladly. I remember how desperate I was with my wife. I told her and felt many times that the disease was "outrunning" us. As I have stated on other posts here, every time we would come up with a "solution" to an aspect of the disease, the progression of the the disease took us on to another one. To all of you reading this for the first time, or that have not read many posts here; please go to the posts entitled "Maybe this will help.." parts 1, 2, and 3. These posts are a synopsis of my wife's symptoms, their progression, and the "solutions" we came up with to deal with them.
I look forward to hearing from any and all of you. gumbypoole@aol.com
I wanted to take this time to wish anyone affected by or afflicted with this disease a very Merry Christmas, Happy Holidays, and a very Happy New Year. To family members that are dealing with or caring for patients and in memory of those that have lost their battle with MSA as well. I have a saying that I have shared with people and try to live by - Have as good a day as you can have.
I am still getting a phenomenal number of hits to this site. Not a week has gone by that I have not gotten multiple emails from people with MSA or family members of patients that are desperately looking for some consolation, advice, or just someone to listen. I answer every one gladly. I remember how desperate I was with my wife. I told her and felt many times that the disease was "outrunning" us. As I have stated on other posts here, every time we would come up with a "solution" to an aspect of the disease, the progression of the the disease took us on to another one. To all of you reading this for the first time, or that have not read many posts here; please go to the posts entitled "Maybe this will help.." parts 1, 2, and 3. These posts are a synopsis of my wife's symptoms, their progression, and the "solutions" we came up with to deal with them.
I look forward to hearing from any and all of you. gumbypoole@aol.com
Monday, November 7, 2011
They just keep coming!
Last month - October 2011 - logged the second highest number of visits to this blog in its existence. As I have stated before, I am constantly amazed at the number of hits this site still gets. I feel kind of bad since I hardly ever post here anymore, so here I am.
Hardly a week goes by without me getting an email or a comment from someone expressing their good wishes/blessings on me and my family or to thank me for writing the posts I did. That is extremely gratifying. As I said when I started this, this blog was for me - especially when it started. I will admit as I talked to and "met" other people with MSA I did get some inspiration to try to offer some posts that I thought might help those going through the hell that is a degenerative neurological disease.
I have noticed that the second most popular post here is my post about stem cell treatments. I understand this as one of the great agonies of MSA is the lack of treatment. I am doing more research now and will do an additional post when I feel I have anything new to add. For now I stick by the recommendation of the original post - stem cell treatment, especially since it involves extensive cost and travel, is not something I feel is worth it. It also could be very dangerous. The hospitals that are doing the procedure are not under any medical protocol approvals like we are used to here in the U.S. It is still very much an experimental procedure. I do not want to take away hope from anyone. I definitely know the burning desire to do SOMETHING to try to beat back this evil malady. I also recognize that I am only giving my opinion. However, it is an educated opinion. I have spend many hours researching the stem cell procedures that are out there now. I have even had two email "conversations" with Doctors in China that work in facilities that do the procedures. (both told me, "off the record" that they would not have the procedure done on themselves or a loved one with MSA - FYI) So, I will revisit this sometime in the next six months.
I am still upset by the lack of views the posts "Maybe this will help" parts 1-3 get. Those contain things I wish I had been told when my wife and I were going through the daily trials and challenges of MSA. I recommend you read these if you are a caregiver. I am not claiming to have all the answers. Heck, I don't even have all the questions. What I tried to do was tell you what we faced, and some of the ways we made it better. If the MSA advances for you like it did for us, knowing ahead of time can be a great help. A lot of our "fixes" we came up with only worked for us for a very short time due to the progression of the symptoms.
I wish everyone affected by MSA my best. Family members, patients, medical staff dealing with the symptoms, researchers working on finding out what exactly is going on with the disease and hopefully working on a cure are all in my thoughts. Best wishes and good luck to all of you. Please feel free to comment or write me - gumbypoole@aol.com
Hardly a week goes by without me getting an email or a comment from someone expressing their good wishes/blessings on me and my family or to thank me for writing the posts I did. That is extremely gratifying. As I said when I started this, this blog was for me - especially when it started. I will admit as I talked to and "met" other people with MSA I did get some inspiration to try to offer some posts that I thought might help those going through the hell that is a degenerative neurological disease.
I have noticed that the second most popular post here is my post about stem cell treatments. I understand this as one of the great agonies of MSA is the lack of treatment. I am doing more research now and will do an additional post when I feel I have anything new to add. For now I stick by the recommendation of the original post - stem cell treatment, especially since it involves extensive cost and travel, is not something I feel is worth it. It also could be very dangerous. The hospitals that are doing the procedure are not under any medical protocol approvals like we are used to here in the U.S. It is still very much an experimental procedure. I do not want to take away hope from anyone. I definitely know the burning desire to do SOMETHING to try to beat back this evil malady. I also recognize that I am only giving my opinion. However, it is an educated opinion. I have spend many hours researching the stem cell procedures that are out there now. I have even had two email "conversations" with Doctors in China that work in facilities that do the procedures. (both told me, "off the record" that they would not have the procedure done on themselves or a loved one with MSA - FYI) So, I will revisit this sometime in the next six months.
I am still upset by the lack of views the posts "Maybe this will help" parts 1-3 get. Those contain things I wish I had been told when my wife and I were going through the daily trials and challenges of MSA. I recommend you read these if you are a caregiver. I am not claiming to have all the answers. Heck, I don't even have all the questions. What I tried to do was tell you what we faced, and some of the ways we made it better. If the MSA advances for you like it did for us, knowing ahead of time can be a great help. A lot of our "fixes" we came up with only worked for us for a very short time due to the progression of the symptoms.
I wish everyone affected by MSA my best. Family members, patients, medical staff dealing with the symptoms, researchers working on finding out what exactly is going on with the disease and hopefully working on a cure are all in my thoughts. Best wishes and good luck to all of you. Please feel free to comment or write me - gumbypoole@aol.com
Saturday, August 13, 2011
The aftermath - a follow up
It was 11 weeks from when I am writing this that the ambulance took my wife away. It was 11 weeks ago that I last spoke to her. It was 11 weeks ago that I was doing chest compressions for 8+ long minutes waiting for the ambulance to arrive. In a way it seems like yesterday. In other ways it seems a lifetime ago.
I am still amazed at the views this blog gets. I am more amazed at the comments. I am extremely grateful for the kind words and thoughts that have been sent my way. I am gratified by the fact that people find some help, information, and attachment here and then take the time to comment on it. As rare as MSA is, there are way too many families out there that are facing this terrible nightmare of a disease. That is the main reason I am posting now. I feel somewhat obligated to do so. However, I gladly would do so every day if I thought I could offer any comfort or help to anyone dealing with this disease (or any of the alphabet diseases).
Even though the diagnosis of MSA is a death sentence, (sorry if that is harsh to anyone reading this that has not accepted this, but unfortunately it is true - at least now) it is so hard facing the end. I am surprised every day at how the loss of my wife is still so raw. In my case I think one of the things that made/makes it so hard is the fact that my wife just "left". I always saw the end as a more gradual thing. Maybe hospice in a bed, surrounded by loved ones, and saying goodbye. My wife passed out and never woke back up. Even though we said our goodbyes, it was not at all what was envisioned. She was not able to say goodbye back. In a way this is a good thing. One of my wife's biggest fears and concerns was a feeding tube, a catheter, and a long drawn out ordeal. I know my wife's condition made her miserable. The inability to communicate was one of her biggest frustrations. She could not speak well at all, with no volume. That make the phone impossible to use. She could not type on her computer due to the tremors and lack of motor control. She was isolated from all those she loved, to a point even those in the same room. I have posts on this site about how many times I said "what?", "excuse me?", or just "huh?". There were a lot of times that she would just say never mind and give up. From that perspective the way things went were definitely for the better. From a "closure" perspective, it was far from perfect; at least for us left here.
I find the days getting easier to deal with. I know this is a good thing. I know this is the natural course. I also know that in a way it makes me feel guilty. It seems like not feeling so sad is not fair to her. But again, I know that a life with nothing but profound sadness is not much of a life at all. I also know with all my heart that she would not want me to be very sad all the time. Every one of us here on earth now will be dead at some point. This is the case with every person that has or ever will live. It is still hard to deal with when it hits you.
The thing that gets me the most is music. I can hear a song from our past, particularly the early days of our relationship, and be hit with a flood of emotions and memories. I still find myself thinking I will have to tell her about something I have seen or heard when I get home that night. Being together for almost 39 years and married for 38+ develops a real attachment at multiple levels. To lose that connection is weird and very difficult to do without. The longest we were apart for those 38+ years was less than a week. To now be at 11 weeks without seeing her or talking to her is still very odd and discomforting.
I will post here when I have something to say. I do check the comments and try to answer anyone that gives me a contact with a question or a request for contact. I do think daily of those that I have "met" through this blog, facebook, and some other MSA-related sites. I would still love to hear from anyone that wants to drop me an email, a comment, or a question. I welcome any of you with questions to look at the three posts here entitled - "Maybe this will help..." parts 1, 2, and 3. They are a synopsis of my wife's symptoms and how we dealt with them.
Until later.
I am still amazed at the views this blog gets. I am more amazed at the comments. I am extremely grateful for the kind words and thoughts that have been sent my way. I am gratified by the fact that people find some help, information, and attachment here and then take the time to comment on it. As rare as MSA is, there are way too many families out there that are facing this terrible nightmare of a disease. That is the main reason I am posting now. I feel somewhat obligated to do so. However, I gladly would do so every day if I thought I could offer any comfort or help to anyone dealing with this disease (or any of the alphabet diseases).
Even though the diagnosis of MSA is a death sentence, (sorry if that is harsh to anyone reading this that has not accepted this, but unfortunately it is true - at least now) it is so hard facing the end. I am surprised every day at how the loss of my wife is still so raw. In my case I think one of the things that made/makes it so hard is the fact that my wife just "left". I always saw the end as a more gradual thing. Maybe hospice in a bed, surrounded by loved ones, and saying goodbye. My wife passed out and never woke back up. Even though we said our goodbyes, it was not at all what was envisioned. She was not able to say goodbye back. In a way this is a good thing. One of my wife's biggest fears and concerns was a feeding tube, a catheter, and a long drawn out ordeal. I know my wife's condition made her miserable. The inability to communicate was one of her biggest frustrations. She could not speak well at all, with no volume. That make the phone impossible to use. She could not type on her computer due to the tremors and lack of motor control. She was isolated from all those she loved, to a point even those in the same room. I have posts on this site about how many times I said "what?", "excuse me?", or just "huh?". There were a lot of times that she would just say never mind and give up. From that perspective the way things went were definitely for the better. From a "closure" perspective, it was far from perfect; at least for us left here.
I find the days getting easier to deal with. I know this is a good thing. I know this is the natural course. I also know that in a way it makes me feel guilty. It seems like not feeling so sad is not fair to her. But again, I know that a life with nothing but profound sadness is not much of a life at all. I also know with all my heart that she would not want me to be very sad all the time. Every one of us here on earth now will be dead at some point. This is the case with every person that has or ever will live. It is still hard to deal with when it hits you.
The thing that gets me the most is music. I can hear a song from our past, particularly the early days of our relationship, and be hit with a flood of emotions and memories. I still find myself thinking I will have to tell her about something I have seen or heard when I get home that night. Being together for almost 39 years and married for 38+ develops a real attachment at multiple levels. To lose that connection is weird and very difficult to do without. The longest we were apart for those 38+ years was less than a week. To now be at 11 weeks without seeing her or talking to her is still very odd and discomforting.
I will post here when I have something to say. I do check the comments and try to answer anyone that gives me a contact with a question or a request for contact. I do think daily of those that I have "met" through this blog, facebook, and some other MSA-related sites. I would still love to hear from anyone that wants to drop me an email, a comment, or a question. I welcome any of you with questions to look at the three posts here entitled - "Maybe this will help..." parts 1, 2, and 3. They are a synopsis of my wife's symptoms and how we dealt with them.
Until later.
Sunday, June 12, 2011
Thanks
I wanted to take a moment to thank all the people from around the world that offered their condolences. I greatly appreciate your thoughts and prayers. The pain has been made easier to bear by the kind words.
I am not sure yet what I am going to do with this blog. I will see. If anyone has any questions or thoughts they would like to share or ask, please do so.
My best to any and all afflicted with or affected by this horrible disease (or any of the alphabet diseases).
Again, thanks,
Scott
I am not sure yet what I am going to do with this blog. I will see. If anyone has any questions or thoughts they would like to share or ask, please do so.
My best to any and all afflicted with or affected by this horrible disease (or any of the alphabet diseases).
Again, thanks,
Scott
Sunday, June 5, 2011
Laugh, Live, and LOVE
This past week has been a surreal experience. I have had the unfortunate experience to lose many family members over the years including my father, but nothing has been close to this. I have had many, many thoughts - as I have stated here before, I am more "creative" when emotional (as you can see in the previous posts from the past seven days).
Here are some thoughts on life:
Probably the biggest advice/most important thing I can pass along is amost a tired cliche - live every day as it is your (or your loved one's) last day. Although my wife had a terminal illness, I thought we had time to do and say what we wanted. If you have something you have always wanted to do, if there is any way you can do it (or a close substitute) financially - I recommend you DO IT! If there is something you want to say - same advice - SAY IT! Besides the loss of my lifetime companion, things left undone or unsaid are the hardest for me. This is especially true if these things are simple things. You may want to go for ice cream. If you are a caregiver for someone that cannot move well, that can be hard. It is easier to say to yourself (or your loved one) - "We will do that tomorrow". I used to tell my kids (in fact we had a little chant that I bet they remember) - tomorrow never comes. By definition that is true - yesterday's tomorrow is today. So, waiting for tomorrow is fruitless in many ways.
Try to find something to laugh at. This one was probably one of the things that my wife and I did the best. She had a great sense of humor and I and am a reknown idiot. I do remember we laughed at many things last Saturday (her last day conscious). I am very glad for that. Oh, there were days we wept togther as well. I feel that is important too, but laughter is great for everyone involved. Try to find something that can make you laugh, as often as you can.
Involve family and friends. I feel my wife and I left this one a bit short. It was so easy for us to withdraw and just have each other. That is great, but it means two people are trying to "recharge" each other. When you get run down and depressed, that can be impossible. I believe the most important thing you get by contact with people that love you, and you love, is strength. We all need to be recharged with love, faith, and friendship to make it. Our internal "batteries" can only go so long without a charge. Like I said, if both of you are low on "juice" that will not happen. You are running on empty. The first two points above can help recharge to a point, but ultimately you need other people to pull the "power" from. Our kids and family were close, but see point one - everyone thinks there is going to be a tomorrow to visit. If you are the caregiver, remember YOU need recharging. This is probably the area that I was most remiss in. I felt like I needed to be with my wife every moment I could. Don't get me wrong, I am greatful for every minute. But, going back to point one, I wonder if I had stepped away occasionally if I would have had the strength (or drive, or gumption, or whatever) to take my wife out more, even if it was just to ride around. Caregivers, take care of yourself. I know I am not the first to say that by any means, but it is important enough to repeat often.
Tell those you love that you love them - do it often. Then repeat. 'Nuff said.
As a follow up (and maybe conclusion) to the above points I will get personal again. We have had family and friends around all week. We have had food enough to feed small countries. We have cried together and we have laughed together. All of that has been wonderful In fact, I do not know how I would have made it through the week without it. However, my wife (and I) would have LOVED to have the people, the food, and the fellowship when she was alive. If you know someone that is suffering with an illness, especially if they are limited in movement - go see them! If they are family, you are REQUIRED to! Any of the gatherings we have had this week, had they happened last anytime in the previous weeks, would have thrilled my wife (and me) to no end. If you know a family that is going through something like mine just did, take them a meal or a dessert. Drop them a call. Send them a card. Offer to go shopping for them. I am lucky in that I have six children that all live fairly close by and they helped me with this, but we still did not get everyone together and commune like we have this past week. Like I said, my wife would have loved it, as I am sure most people in her condition would have. Make a point to contact them.
Enough for now. I realize I got a bit "preachy". Sorry. I do feel strongly about this for obvious reasons. I hope I can live up to my own words as I go forward.
Here are some thoughts on life:
Probably the biggest advice/most important thing I can pass along is amost a tired cliche - live every day as it is your (or your loved one's) last day. Although my wife had a terminal illness, I thought we had time to do and say what we wanted. If you have something you have always wanted to do, if there is any way you can do it (or a close substitute) financially - I recommend you DO IT! If there is something you want to say - same advice - SAY IT! Besides the loss of my lifetime companion, things left undone or unsaid are the hardest for me. This is especially true if these things are simple things. You may want to go for ice cream. If you are a caregiver for someone that cannot move well, that can be hard. It is easier to say to yourself (or your loved one) - "We will do that tomorrow". I used to tell my kids (in fact we had a little chant that I bet they remember) - tomorrow never comes. By definition that is true - yesterday's tomorrow is today. So, waiting for tomorrow is fruitless in many ways.
Try to find something to laugh at. This one was probably one of the things that my wife and I did the best. She had a great sense of humor and I and am a reknown idiot. I do remember we laughed at many things last Saturday (her last day conscious). I am very glad for that. Oh, there were days we wept togther as well. I feel that is important too, but laughter is great for everyone involved. Try to find something that can make you laugh, as often as you can.
Involve family and friends. I feel my wife and I left this one a bit short. It was so easy for us to withdraw and just have each other. That is great, but it means two people are trying to "recharge" each other. When you get run down and depressed, that can be impossible. I believe the most important thing you get by contact with people that love you, and you love, is strength. We all need to be recharged with love, faith, and friendship to make it. Our internal "batteries" can only go so long without a charge. Like I said, if both of you are low on "juice" that will not happen. You are running on empty. The first two points above can help recharge to a point, but ultimately you need other people to pull the "power" from. Our kids and family were close, but see point one - everyone thinks there is going to be a tomorrow to visit. If you are the caregiver, remember YOU need recharging. This is probably the area that I was most remiss in. I felt like I needed to be with my wife every moment I could. Don't get me wrong, I am greatful for every minute. But, going back to point one, I wonder if I had stepped away occasionally if I would have had the strength (or drive, or gumption, or whatever) to take my wife out more, even if it was just to ride around. Caregivers, take care of yourself. I know I am not the first to say that by any means, but it is important enough to repeat often.
Tell those you love that you love them - do it often. Then repeat. 'Nuff said.
As a follow up (and maybe conclusion) to the above points I will get personal again. We have had family and friends around all week. We have had food enough to feed small countries. We have cried together and we have laughed together. All of that has been wonderful In fact, I do not know how I would have made it through the week without it. However, my wife (and I) would have LOVED to have the people, the food, and the fellowship when she was alive. If you know someone that is suffering with an illness, especially if they are limited in movement - go see them! If they are family, you are REQUIRED to! Any of the gatherings we have had this week, had they happened last anytime in the previous weeks, would have thrilled my wife (and me) to no end. If you know a family that is going through something like mine just did, take them a meal or a dessert. Drop them a call. Send them a card. Offer to go shopping for them. I am lucky in that I have six children that all live fairly close by and they helped me with this, but we still did not get everyone together and commune like we have this past week. Like I said, my wife would have loved it, as I am sure most people in her condition would have. Make a point to contact them.
Enough for now. I realize I got a bit "preachy". Sorry. I do feel strongly about this for obvious reasons. I hope I can live up to my own words as I go forward.
Saturday, June 4, 2011
TEARS
As I wipe my eyes again
I know,
I'll never be the same.
I think I'm done,
but they can well back up
whenever I hear your name.
Sure
I laugh at things.
But it's more for them than me.
I wonder if life will ever seem
the way it used to be.
Tuesday, May 31, 2011
Melted
If the sun and sky is dimmer it is because the light of my life went out! I will always love you!
To Carol:
I will always live with what I did and did not do. I am profoundly saddened by my inability to do all you needed. It was not from lack of concern, effort. or love. Our 38 years+ was WAY too short. You were the yin to my yang. I am left with a hole in my heart that cannot heal. Thanks for leaving part of you here with me in our six great children. They salve my wound.
Snow always melts!
To Carol:
I will always live with what I did and did not do. I am profoundly saddened by my inability to do all you needed. It was not from lack of concern, effort. or love. Our 38 years+ was WAY too short. You were the yin to my yang. I am left with a hole in my heart that cannot heal. Thanks for leaving part of you here with me in our six great children. They salve my wound.
Snow always melts!
Sunday, May 29, 2011
There is a Hell!
Regardless of your belief in Heaven and Hell, I can assure you without a doubt - there IS a Hell! This is not a hell of fire and brimstone. This is not a hell of evildoers or non-believers that I am speaking of. It is a hell of doubts and second guesses. It is a hell of what-ifs, and whys? It is a hell of alarms and cords, tubing and needles. It is not a hell of below - it is a hell of here on earth.
MSA is a hell. The consequences of MSA and other alphabet diseases are HELL!
The flesh is temporary. LOVE is eternal.
We are powerless over MSA. MSA is powerless over LOVE.
I want to send out hugs, kisses, and LOVE to any and all afflicted with this DAMNED disease.
Peace be with you.
MSA is a hell. The consequences of MSA and other alphabet diseases are HELL!
The flesh is temporary. LOVE is eternal.
We are powerless over MSA. MSA is powerless over LOVE.
I want to send out hugs, kisses, and LOVE to any and all afflicted with this DAMNED disease.
Peace be with you.
Saturday, May 7, 2011
Watch what you wish for...
I know most if not all of you have heard the expression - "Watch what you wish for. You just might get it" (or similar). I can attest this is true.
During the time my wife and I have been dealing with this disease, I have often commented on the lack of interaction and contact between people dealing with it. With an estimated 4.6 people per 100,000 population, that does not give a large group to interact with. My wife and I are yet to meet in person another patient with MSA, except for a MSA national conference and support meeting we went to a few years ago. This was in Tennessee (we live in N.C.), "promoted" nationally, and even at this event there were only ten or twelve patients.
Through this blog, my other "all purpose blog", facebook, and the various forums on MSA support and awareness pages; I have made contact and "met" eight or nine patients or caregivers of patients with MSA over the past six months or so. It has been great to communicate, even distantly, with people that can share and understand exactly what you are going through.
Now for the downside and the reason for the title of this disease. In the six months or so I have "known" these people, two of the people afflicted with this terrible disease have succumbed to it.
The contact I was wishing for (and enjoyed when it occurred) becomes itself a reminder of how insidious and relentless this damned disease is. One fourth of the people I have "met" that have this disease have died within six months of our first contact!
Damn I hate this disease. Bless everyone that is suffering from it - patients, family, and friends - even those that only meet like this.
During the time my wife and I have been dealing with this disease, I have often commented on the lack of interaction and contact between people dealing with it. With an estimated 4.6 people per 100,000 population, that does not give a large group to interact with. My wife and I are yet to meet in person another patient with MSA, except for a MSA national conference and support meeting we went to a few years ago. This was in Tennessee (we live in N.C.), "promoted" nationally, and even at this event there were only ten or twelve patients.
Through this blog, my other "all purpose blog", facebook, and the various forums on MSA support and awareness pages; I have made contact and "met" eight or nine patients or caregivers of patients with MSA over the past six months or so. It has been great to communicate, even distantly, with people that can share and understand exactly what you are going through.
Now for the downside and the reason for the title of this disease. In the six months or so I have "known" these people, two of the people afflicted with this terrible disease have succumbed to it.
The contact I was wishing for (and enjoyed when it occurred) becomes itself a reminder of how insidious and relentless this damned disease is. One fourth of the people I have "met" that have this disease have died within six months of our first contact!
Damn I hate this disease. Bless everyone that is suffering from it - patients, family, and friends - even those that only meet like this.
Sunday, May 1, 2011
Stem Cell Treatment - my take
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.
Everywhere you go on any MSA support or information site forum, you will find questions about stem cell treatment. I have done a LOT of research on stem cell treatment, especially as it relates to MSA and/or the cerebellum and medulla. Here is what I have found.
Stem cell treatment is not an approved therapy in the U.S. for most applications. It is still in the research stage in most areas that it has been approved for at this writing. There are some amazing results in very specific instances. The reasons for stem cell therapy not being approved are many, some of which are idiotic (in my opinion) protests for religious or moral reasons. That is another topic for later. Stem cell treatments are not approved for mainstream applications yet because they have not been proven safe or effective. I think some day stem cell treatment will be of great benefit, especially in certain diseases or traumatic injury. I do NOT think MSA will be one of them. Here is why.
Stem cell therapy works by inserting stem cells into a damaged area. Stem cells have the ability to recreate any cell in the body. Where cellular degeneration is involved, this can be a miracle just waiting to happen. MSA, and some other degenerative neurological diseases, involve a destruction of brain tissue especially in the medulla and cerebellum. The dopamine receptors are also specifically targeted by the disease. A bit of background (a disclaimer - I am not a doctor or trained in medicine. I read a LOT and have spoken at detail with a LOT of neurologists. This is not meant to be a scientific dissertation, just informative. I am sure there are mistakes, hopefully none of a major variety. Feel free to correct me.) - in Parkinson's the body's ability to produce dopamine and certain other neurogenic transmitters is compromised (or halted). The receptors and mechanisms to utilize the neuro-transmitters is still intact in most cases. That is why supplementation with L-Dopa is usually effective, especially in the early stages of the disease. In MSA the dopaminic receptors are damaged/destroyed. That is why a large number of MSA patients do not respond to dopamine supplementation. There is no system by which it can be utilized no matter how much is there.
Now the reason for stem cell treatment not working in MSA. The mechanism by which the dopamine receptors and brain tissue is being destroyed is not known. If (and it is a big IF) stem cell therapy were to regenerate the receptors and/or the brain tissue, it would be destroyed again. How about an example - you buy an old house. A few years in you start having electrical problems. You call an electrician and he says you have frayed wiring that is shorting out. You have him replace the wires. Months later you start having the problems again. The electrician comes out and says your wires are frayed again. You find there is something eating at the wires. You know the electrician can replace the wires again. However, even if you completely rewire the house the problem will continue until you find and eliminate whatever is eating at your wiring. (I know, call an exterminator. Easy - but try to find an exterminator that will work in the human brain on an unknown vermin!) MSA has unknown vermin eating at the wiring of the brain. All the replacing in the world will not solve the problem.
There are risks involved in stem cell therapy. There are immense costs involved, not the least of which travel to a foreign country is involved. In my opinion, after extensive research; there is no benefit to MSA patients that outweigh those risks and costs. It would appear the best you could hope for is a short reprieve from some of the symptoms.
Believe me I know first hand how frustrating this disease can be with it's relentless decline, clueless medical personnel, and lack of treatment. I just do not see stem cell treatment as any part of the answer, at least at this stage of development.
Everywhere you go on any MSA support or information site forum, you will find questions about stem cell treatment. I have done a LOT of research on stem cell treatment, especially as it relates to MSA and/or the cerebellum and medulla. Here is what I have found.
Stem cell treatment is not an approved therapy in the U.S. for most applications. It is still in the research stage in most areas that it has been approved for at this writing. There are some amazing results in very specific instances. The reasons for stem cell therapy not being approved are many, some of which are idiotic (in my opinion) protests for religious or moral reasons. That is another topic for later. Stem cell treatments are not approved for mainstream applications yet because they have not been proven safe or effective. I think some day stem cell treatment will be of great benefit, especially in certain diseases or traumatic injury. I do NOT think MSA will be one of them. Here is why.
Stem cell therapy works by inserting stem cells into a damaged area. Stem cells have the ability to recreate any cell in the body. Where cellular degeneration is involved, this can be a miracle just waiting to happen. MSA, and some other degenerative neurological diseases, involve a destruction of brain tissue especially in the medulla and cerebellum. The dopamine receptors are also specifically targeted by the disease. A bit of background (a disclaimer - I am not a doctor or trained in medicine. I read a LOT and have spoken at detail with a LOT of neurologists. This is not meant to be a scientific dissertation, just informative. I am sure there are mistakes, hopefully none of a major variety. Feel free to correct me.) - in Parkinson's the body's ability to produce dopamine and certain other neurogenic transmitters is compromised (or halted). The receptors and mechanisms to utilize the neuro-transmitters is still intact in most cases. That is why supplementation with L-Dopa is usually effective, especially in the early stages of the disease. In MSA the dopaminic receptors are damaged/destroyed. That is why a large number of MSA patients do not respond to dopamine supplementation. There is no system by which it can be utilized no matter how much is there.
Now the reason for stem cell treatment not working in MSA. The mechanism by which the dopamine receptors and brain tissue is being destroyed is not known. If (and it is a big IF) stem cell therapy were to regenerate the receptors and/or the brain tissue, it would be destroyed again. How about an example - you buy an old house. A few years in you start having electrical problems. You call an electrician and he says you have frayed wiring that is shorting out. You have him replace the wires. Months later you start having the problems again. The electrician comes out and says your wires are frayed again. You find there is something eating at the wires. You know the electrician can replace the wires again. However, even if you completely rewire the house the problem will continue until you find and eliminate whatever is eating at your wiring. (I know, call an exterminator. Easy - but try to find an exterminator that will work in the human brain on an unknown vermin!) MSA has unknown vermin eating at the wiring of the brain. All the replacing in the world will not solve the problem.
There are risks involved in stem cell therapy. There are immense costs involved, not the least of which travel to a foreign country is involved. In my opinion, after extensive research; there is no benefit to MSA patients that outweigh those risks and costs. It would appear the best you could hope for is a short reprieve from some of the symptoms.
Believe me I know first hand how frustrating this disease can be with it's relentless decline, clueless medical personnel, and lack of treatment. I just do not see stem cell treatment as any part of the answer, at least at this stage of development.
Wednesday, April 27, 2011
Visions
I see you sometimes as you were
laughing, not crying.
walking, not lying.
doing, not trying.
living, not dying.
I see you mostly as you are
sitting, not walking.
quiet, not talking.
with death stalking.
But,
I see you sometimes as you were.
laughing, not crying.
walking, not lying.
doing, not trying.
living, not dying.
I see you mostly as you are
sitting, not walking.
quiet, not talking.
with death stalking.
But,
I see you sometimes as you were.
Tuesday, March 29, 2011
Maybe this will help - part 3
THIS IS PART 3 OF A SERIES OF POSTS I DID THAT COVER MY WIFE'S SYMPTOMS AND THINGS WE DID (OR LEARNED) TO HELP. I NOTICED THAT THIS ONE GETS READ SIX OR SEVEN TIMES MORE THAN THE OTHER TWO. IF YOU OR A LOVED ONE ARE SUFFERING FROM MSA (or a similar disease) I HIGHLY RECOMMEND YOU READ THE OTHER TWO AS WELL. THESE ARE THINGS THAT I WISH WE HAD KNOWN IN OUR JOURNEY. Scott 12/15/12
Here we go again with symptoms and complications of my wife's MSA (Multiple System Atrophy for those of you not playing along).
I thought of this one when I was writing yesterdays post. It actually started before all the others, but in a non-intrusive way. (plus I was not involved at that point) I am talking about incontinence.
Urogentital problems are some of the first to show up in most MSA patients. Bladder leakage, especially in women, erection problems in men; and the host of other "plumbing" issues that can occur - usually do.
For those of you that are not on the north side of 50 or females without multiple pregnancies and birth, you may not realize that these problems are quite common among those that do fit into these categories. Therefore the onset of these symptoms is not attached to MSA until MSA attaches itself, in most cases.
We have six children. For those of you who still look for storks or go to the cabbage patch, that means my wife carried and delivered six little people. That takes a toll on the body, especially in the area of discussion here. As most men are, I was ignorant of this fact. I did not know that most women over the age of 40 pee when they sneeze or laugh. (note to women - you guys have done a wonderful job of coverup. But, you need to stop the Poise people. They are blowing it for you!) My wife had been having some "leakage" problems for a while. The move to incontinence was and is a gradual one. MSA speeds this process up, dramatically in some cases.
We do not have any secrets here. I can highly recommend the undergarment products sold by Wal-Mart sold under the Assurance brand. They are of a good quality. They work as needed. They are much less money than the name brand stuff like Depends. Tena makes a good incontinence pad. They have a nightime version that again, really works. It is also less money than the Poise. In our experience, it actually works better.
There are bed pads that can be used for chairs as well as beds. I can tell you, in our experience, the lower priced ones here are fine. They are a backup anyway. I would advise you to put one under the sheets as a backup. We have saved the matress a few times with this one. If no accidents occur, you just leave it when you change the sheets. One other note - always travel with a backup pad/brief or any other products you use. You never know. (there is a post I did called - "To pee or not to pee" that goes into this")
My wife has also gotten some help from medicine. She takes a product called Sanctura, the extended release version. She has been on it for over a year now. Although we would have to take her off it to see what exactly it is doing now, we did notice a marked improvement when she started. Her "control" is better now than is was when we started as well. It has the side benefit of being an anticholinergic. This class of drugs was used to treat Parkinson's symptoms before the discovery and use of Levadopa. So, in addition to helping with her bladder problems it seems to help somewhat with the parkinsonism aspect of her disease. There are other better known products for bladder control. You may see some commercials on TV. The reason for this one, we were told, is the fact that it does not affect the brain function. My wife has the curse of participating in most negative side effects of drugs. Other bladder control medicines seemed to bother her more than this. Other than a dry mouth, this one seems fine. You and your doctor would have to find the best for you. I would recomment you put Sanctura on your list however.
Beyond making you aware of the medicines, the incontinence products aisle that is now in almost any full-line retailer, and the products we have found to be the best deal; I would want to remind you of an important point. DO NOT TRY TO CONTROL INCONTINENCE BY LIMITING FLUIDS!! With the orthostatic hypotension that is prevelant among most MSA patients, it is critical to remain fully hydrated. My wife was trying to control her "leakage" early in this process with the result that she was passing out more often. Not a good trade off. Drink liquids - as much as you can. The benefits outweigh the negatives.
As the title says - Maybe this will help.
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