Please visit my original, "all-purpose" blog http://www.justsomeposts.blogspot.com/ or my new discussion blog http://www.thehorseyouroadinon.blogspot.com

Friday, January 6, 2017

Part 2


http://www.msaawareness.org/ A prime (if not THE prime) location for information - in fact most if not all of the below links can be found on this site as well.

http://rarediseasesnetwork.epi.usf.edu/index.htm
http://www.ataxia.org/
http://www.americanautonomicsociety.org/

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?
 

Sunday, April 7, 2013

Some Thoughts

OK, I shamed myself into writing a post. As I have said now time after time, I am amazed at the people that are still reading this. I feel proud and pleased that the posts that are getting read, for the most part, are those dealing with trying to help others deal with MSA and other alphabet diseases. The most popular post over the past year has been my first about stem cell. I understand the allure, I understand the interest. One of the reasons I wrote the post anyway was after an exhaustive research on my part in looking for something to help my wife. I decided after this research that it was a waste of time and money. I still feel this way. I have had some that have written me saying I am taking away hope. I am maybe guilty of taking away what I (and most experts) feel is false hope. Unless you are in a financial position that $30,000 to $40,000 is not an issue to lose, there appears to be no good reason to try what is a risky, and unproven procedure at this point. My opinion is it will remain this way for a long time, if not indefinitely. If you have not read the post, in a nutshell (besides being expensive, dangerous, and unproven) to replace cells that are dying without finding, stopping and preventing the reasons for the cell death, at best you are only prolonging the inevitable. There have been some patients that have had the procedure (in China mostly) that have experienced a "remission" of sorts or even an improvement in symptoms for a while after the procedure. I feel this is due to the placebo effect. Now, I realize if you are better, who cares why or how? There are also patients that have died during or immediately after the procedure. I will stand by my comments.

One other issue I will bring up here is one that has been on my mind of late. That is the issue of "awareness". It seems that all my brethren in the MSA family are hell-bent on awareness. I will admit I do not understand the call. If we were among the first groups afflicted with the disease (I was a caregiver to my wife, who died from complications of MSA), I would understand more. There is plenty of awareness among the medical field where it matters; researchers. However, being realistic, with such a small population being affected one cannot expect a full-out assault like the one on polio or smallpox generations ago. I am not trying to be heartless, I am not trying to be a defeatist. I am a realist. Doctors know of Shy-Drager, if not MSA. Doctors are taught OPCA, and other names for the same or similar diseases. The problem is, unless in a large area or a teaching hospital, they may not see an actual patient in their career. When my wife and I went to UNC Neurological Hospital to see a doctor that specializes in MSA (movement disorders is typically where these doctors are categorized), we found he had three other active patients and had treated less than 20 in his career. His department head said that those numbers were typical of the four doctors they had seeing MSA patients. We found this to hold true at Duke University Medical Center, Medical University of South Carolina, and every other hospital we went to.

One of the complaints I hear that I think are driving the awareness calls are concerning how long it takes for a diagnosis. One has to understand, doctors do not want to give this (or similar) diagnoses. Remember there is no cure or treatment. There are no medicines or drugs to "cure" anything. Yes, there are drugs that can help with the symptoms. Most of these are started when those symptoms are noted anyway, regardless of the diagnosis, or lack of. I know from first-hand (or second-hand if you are looking realistically on me as a caregiver, not a patient) experience how frustrating is can be to go from doctor to doctor, test after test, and visit after visit to try to get a handle on what is going on. But, I also remember the devastation when we got the official diagnosis. (I say official because I and to some degree my wife, had already come to that conclusion from our own research) Doctors want to make sure they rule out any other disease which can have similar symptoms, some of which DO have treatments if not cures. Believe me, as hard as the waiting is one does not want to hear the diagnosis of MSA.

On research: there are many fine, wonderful, dedicated, and devoted researchers that are working on finding a cause, treatment, and ultimately a potential cure for MSA and other alphabet diseases of the brain. I feel the greatest results will come from all the research into the brain and its diseases in general. The brain is one of the least understood organs in the human body. To put it in perspective, it essentially cannot do all it does. We can build computers now that can do computations as complex and intricate as the brain. However, we have never come close to building a machine that can do that and all the simultaneous things the brain does AND have self-awareness. The brain is a wondrous, fantastic, intricately homogenized machine that is a problem waiting to happen. The complex, amazing "dance" performed by this organ can be wrecked if just a few "wires are crossed". When dealing with the myriad of brain diseases like MSA, PSP, DLB, HD, PD, ALS, and others, the research is being done at a "grand level". There is still so much we do not know about the brain that a finding from a researcher studying Huntington's Disease may be a breakthrough for MSA or others. It seems to me that as much as we need to support research into MSA specifically, research into any degenerative brain disease benefits the cause.

I wish all reading this well. I hope you are just doing research out of curiosity not because you or you loved one are suffering with MSA. I will remind you that that are pages here that I did covering my wife's symptoms and what steps we took and/or what devices we used to help. They are under the title "Maybe this will help..." There are three pages. They are not truly chronological, as I wrote them as I thought of them. Plus, I can tell you from talking to other MSA patients, although most get the same symptoms they do not come at the same time or in the same order.

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.

Saturday, December 15, 2012

Tragedy

This is something I've had in my mind for quite a while. The horrible killings in Connecticut yesterday prompted me to do it. All the best to those families that were affected by the 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.