Wednesday, July 16, 2014

Alz. Decline in USA study? Questionable...

I was listening to a radio show yesterday that one of our Mp members was on, Mara Maitlin Botonis. Mara has an excellent book out called, "When Caring Takes Courage". It can be found on Amazon, and other online book stores.

One of the callers to the show brought up a very interesting topic, one that I had heard of and I was wondering your take on it.
Seems there was a study done, and it showed that Alzheimer's Disease is on the decline in the United States.

That was the headline. "Alzheimer's on decline in the United States." They use headlines like this to get your attention.

In my opinion, this is all to do about nothing. And I have facts to back this up. Since my official diagnosis, I have made it my life's mission to learn all I could about dementia.

Little did I know back then, what I indeed would learn the the most about it, was by experiencing the disease. All too often as in this article you will find opinions.
And opinions are fine, the problem is some take these opinions to be gospel. They are not. Fact is, they are at best, opinion.

They, the researchers and such have just started compiling statistics in the last thirty or forty years. Dementia has been dated back to the 1800's and it was officially discovered until 1906.

So, in my calculations what statistics these people do have are skewed, at best. Not until recent years did they even put dementia as a cause of death on anyone's death certificate.

And most of all, there is no way that the figures these organizations spew out can be close to correct. Can you imagine how many have died from dementia who were never diagnosed? Never even seen a doctor?
So when someone comes out with a study, I have to look back and see what studies were done in the past, only to see how ridiculous this recent claim that Alzheimer's is declining in the United States.

First of all the only way a diagnosis can be 100% accurate is from an autopsy of the brain. I would venture to say only a very small percentage of those who have died with dementia symptoms have had this done.

A very small percentage. Now there are claims that you can find that even an autopsy of the brain isn't conclusive. So, who do you believe?

Here's the fact, if you want to believe that Alzheimer's is on the decline in the United States, do that. But, there is no evidence of that. Like I alluded to, every study that has been done is never going to be correct, simply because no one has a legitimate core number to base any study on.

In other words, those who claim this cannot prove it. What may very well be going on here is an attempt to quash the soon to be discovered out rage that will happen when people wake up and realize that the our Gov't has put this whole dementia thing on the back burner for decades.

They have done little to nothing to aid in the research that needs to be done. When any President allocates monies for dementia studies everyone gets all excited and thinks for what ever reason that because he allocates millions in the budget, that this indeed happens.

It doesn't. Allocating means, asking in a sense. The President cannot tell Congress how much and what to spend money on. And it is indeed Congress who writes the checks, not the President. thinking is if anything this could be the start of some campaign to make it appear as if what has been done for Alzheimer research, has indeed made a difference.

It hasn't. It will. But it hasn't. Anyone who tells you this is either uninformed to just telling you what they think you want to hear.

So, if you read about Alzheimer's being in decline, or you see in on a national news story, don't just think cause its news, it is indeed what is happening.
Common sense tells you that even if, and that is a very big it, but even if Alzheimer's was on the decline, there will never be the facts to determine it for decades.
And out of the blue we hear that it is indeed on the decline? Food for thought is all this is.

Makes for good debate, no matter which side of the discussion you are on. Makes you think, and thinking is never a bad thing...

Tuesday, July 8, 2014

MP Moves to a New Level

I have been called a hero by many people. I am doing nothing more than anyone else in the early to mid stage of this disease can do.

I simply am talking about it more. Most don''t talk about it, or can't. What I do, everything that has happened has been on account of the members we have.
I seen a need for a place where people could come to on the internet, get real time answers to their questions and be supported by one another.

If you can believe it, in the beginning I was told by many people you can't have patients, family members, caregivers and advocates on the same site.

I of course said, "Why? How could you not?" Just because no one at the time did it, doesn't mean it can't be done, and surly doesn't mean it shouldn't be done.

The rest is all because of the members. I have said since the beginning this isn't about Rick Phelps. It's about what we do on Mp for one another.

Everything I have done for the last five years has lead to where we are today. The site here, the book, the song, the speaking engagements and much, much more.

And now we are taking it to a new level. Because the need is there, and no one else is doing what we can do, or the approach we do it in.

We will be having support groups all across the nation springing up. Doing just what we do on Mp, something other organizations do little of...

We talk about the disease. We defy denial. We don't skirt around the hard questions. And we don't sugar coat anything.

What you get on Mp is the truth. Not talk about the latest concoction to come down the pike, or the cure that is coming some day.

Everyone needs Hope. But when you tell someone a cure is coming and you allow them to believe it could happen in their life time, that is not being honest. That is false hope.

It's also a form of denial. A cure is coming. But when? No one knows. I do know they are no closer now then they were five years ago when I was diagnosed.
I also know that if a cure was found today, it would not help me. The FDA would have it tied up for decades before it was released to the general public.
I also know if coconut oil, fish oil, and all these other concoctions did what many claim they do, no one would be abel to afford them.

If coconut oil was this wonder drug, it would run you about $10,000 a jar. We all know this, but you won't hear anyone speak of it.

We are at an impasse of sorts on account of our Gov't not allocating enough funding. All the walks to end Alzheimers in the world will not cure this disease.
In my opinion the walks do one thing, and one thing only, they go to administration fees. They go to payroll for the Alzheimer Association.
Did you know that the President of the Alzheimer Association makes $996,000 a year. With a retirement of $393,000 a year? They are ninth on the highest paid positions for charitable organizations that are listed.

Now, who of you think that any one person is worth that kind of money? This is what you won't hear about some of these organizations.

So the next time you give to the Alzheimer Association have some fun, ask them where the money goes. I did. And was immediately shut down.
I tell you, there is nothing wrong with donating to any organization, but when the powers to be of that organization are making astronomical amounts of money, you have to ask yourself where does my money go?

There is not one thing wrong with supporting any organization you believe in. We are now a non profit organization and will indeed be accepting support also.
You will never see us ask for donations here on Mp. We know all to well that most of our members live payday to payday.

They have trouble paying for their medications sometimes let alone being hounded for monies here. We haven't allowed that here and we ourselves won't be doing that either.

We will have a link in time to a page that we will post for those of you who can and want to support what we do here.

We are concentrating on most of our support coming from foundations and grants. We do want those of you to know that we are a non profit now and will have a place where you make a donations soon if anyone choose to do so.
But we will once again be running our on site support groups just. as we run this site here. Responsibly. Not many organizations can tell you that. Not many at all...