Thursday, March 26, 2015

Still No Progress For A Cure

The last few days have been difficult at best. As a patient, when I do post during these difficult days, some members feel I'm sure I am being negative.
When you read some of my posts and they do come off as negative or unappreciative keep in mind they are from of patient's perspective.
Long ago even before Memory People I made a vow to myself to share with others what I go through as a patient.
Nothing irritates me more then listening to or reading something about this disease from someone who knows little to nothing about it.
Yet this goes on constantly. I've done dozens of speaking engagements where I was the first patient there that has ever discussed anything about this disease.
To me this is unimaginable. There are literally tens of thousands of patients who can and would talk about this disease if only asked.
I am not saying that the so-called professionals do not know what they're talking about. However, if you are a family member or a caregiver for patient do you want to learn about this disease from someone who studied it, or from someone who lives it?
I am not an expert. But I am a patient. To me there's been no progress, none whatsoever, when it comes to research about this disease.
There have been strides, but these strides are going backwards not forwards.
When you read about the latest research being done, working with rats, that tells me everything I need to know about where we are going.
This disease didn't start 10 years ago. Alzheimer's is been around officially since 1909. Yet hundred and six years later there is still little known about this disease.
Well there ever be a cure for dementia? If you believe what you read, dementia will indeed be cured by the year 2025. Ten years from now.
Fact is after the 50 years of studying this disease there are still no answers.
For years now the Alzheimer's Association has had its yearly walks to an Alzheimer's. These too have failed miserably. Sure they raise money, but where does that money go?
I have asked this question many, many times and all I get is this deer in headlight look. If the Alzheimer's Association came out and said "the money raised from these walks take care of payroll and other administrative fees", then I would be satisfied.
Is not my intention to bash the Alzheimer's Association. They have helped us out immensely. But when the CEO of this organization makes over $900,000 a year, there is absolutely no way to justify this.
Through the years I have been asked by many organizations to speak at their conferences or asked to conduct interviews with them.
One of them in particular was interested in me because I am so outspoken. They even went as far as to have a camera crew here our house filming interviews with me.
In the end, our relationship did not last. Why? Because I am indeed outspoken. I tell people what they need to hear, not what they want to hear.
This all sounds well good until what I have to say contradicts with what the organizations claim they stand for.
My number one concern always has been and always will be for the patient and caregiver. If what I have to say ruffles feathers, so be it.
I didn't get into this to make friends or to form partnerships. Some people take what I say and write it off. If it doesn't fit their platform they claim my statements and outlook are coming from the dementia patient.
I had a camera crew here at the house for over three days a few years back. They were affiliated with a producer from the Los Angeles area. He was interested in doing the story about patients in early, mid, and late stages of this disease.
In reality what they were looking for was some sort of drama to put it on film. They actually directed me to stand in front of a mirror and just stare into it.
This of course doesn't happen in real life. In reality mirrors are sometimes covered over because the patient doesn't recognize who they are looking at.
I, of course refused to do this, and I set the camera crew and the producers down and explained them that things are going to be done my way, or they simply wouldn't be done at all.
We came to understanding moved on. Many times you will find people are involved in the dementia business for all the wrong reasons.
I call it a business because it is. Literally hundreds of millions of dollars are made in the field of dementia.
We are all in this together, sadly however some are in it for all the wrong reasons.
Just because I stand in my garage doesn't make me a mechanic, just because someone has a title doesn't make them an expert on dementia.
I will continue to fight the good fight, "While I Still Can..." or as Charlton Heston said, "Tell they pry this from my cold, lifeless hands".