NOTE: This blog is now available as a book with added comments and thoughts. It is a fundraiser for MSA research. Please consider purchasing either a kindle version from the Kindle store @$3.99, the Paperback version at Amazon @$19.99 and letting all your friends and family know. We can help find treatments and a possible cure for MSA and other alphabet diseases! It can be purchased here.
Also visit my original, "all-purpose" blog http://www.justsomeposts.blogspot.com/

Saturday, April 14, 2018

A Book

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

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.