Tuesday, February 9, 2016

How And Why Memory People Was Started

Many times there are very kind words said to me here. About my posts, about what I share, about what discussion it brings.

And I am very humbled by it. Very. But I want to explain how this got started. Why I started this site, why it works, and why what we do is the very best thing that is available right now.

I have always been about helping others. My career in law enforcement, EMS, and State Investigator for nursing facilities. All of these career choices were not random.

I worked very hard to be a good as I possibly could in ever one of them. Helping people is something that I have always been drawn to since I was very young.

Help the down and out, help those who they system has overlooked for whatever reason. Everyday in LE and EMS I thought to myself, today I will make a difference in someones life.

This was very rewarding to me. My wife is cut from the same cloth. She has been doing EMS for over thirty years now. And loves it. You have to.

Right after my diagnosis, I kept my thoughts to myself for about a week. I was relieved that I had finally gotten a diagnosis, even as devastating as it was.

I then sat Phyllis June down and explained to her what I wanted to do. I found out right away there were no answers to the questions I had. The doctors said the canned speech.

"You have a terminal progressive disease to which there is no cure and nothing to slow the progress at this time. Here is the meds you need to take, come back and see me in six months."

This didn't cut if for me. Matter of fact it was unacceptable. Don't tell me there are no answers. I was determined to find them. On my own.

After many months or reading about dementia on the typical websites and internet in general I found out that there are more answers then one could ever think.

The problem was, almost every one I found was written by or suggested by someone who studied about dementia, or was just trying to make a buck off of this disease. Selling their concoctions, there snake oil if you will. There flash in a pan ideas.

I could not find one site where the information that was given, was indeed given by a dementia patient. Not one. And I looked, believe me.

So, in my mind this had to change. Who could do this, I thought? So, I sat Phyllis June down and told her I found someone who could blow the lid of this dementia debacle, tell what it is really like to deal with it, and dispel all the rumors.

She looked intently at me, listen to my rant and finally said, "good, who is is and where are they at?"

I said, sitting right here at the table with you. I want to take this thing we are living and hit the road. Tell my story, the story is not only mine, but it is indeed every dementia patients story. The problem is most won't or can't talk about it.

This has to change. So I pitched the idea of Memory People to her. Then I hit her with the book idea. This I told her this would change everything, but most of all our private lives would no longer be private. I was very important to me that she understood this.

The journey we have been on since has helped us just as much if not more that anyone else. I have to admit it started out slow. But it did catch on.

What you ask? The genius thing I had stumbled upon which no one that I could find had ever used, including and not limited to the doctors.

We talk to one another. We use our real names, not some nickname, we talk about the hardest things. We don't and won't sugar coat anything, and we will never lie or tell someone something just because that is what they want to hear.

Along this journey I have done things I would have never thought of before. I wrote a book, and I can't read any more than three paragraphs and know what I read in the first paragraph.

I co-wrote a song, "While I Still Can..." that was recorded in Nashville, Tenn. by my life long friend Dan Mitchell, record producer and recording studio owner of one of the top studios in Nashville.

I hit the speaking engagement tour. Doing dozens of speaking engagements all over the United States.

This indeed has changed our lives. But it has changed our lives for the better. We have met life long friends we would have never met if not for dementia. We have had the opportunity to help tens of thousands of people by just talking.

Telling them the truth. Not what you think they may want to hear. What I do anyone can do and many others in our group do as patients.

We learn from one another. We talk about things that you cannot share with your own family. We talk about things that others would never even mention.

We tell people we are not about cures here on Mp. What we are interested in is getting you through today, this hour, this minute. And then we get up and do it all over again.

The fact is they are no closer today then they were twenty years ago when it comes to finding a cure. And that's alright. These things take time, research, money, and trillions of it.

I have said many times not one Walk to End Alzheimers is ever going to cure anything. In my opinion doing these walks you are simply making payroll for the money making machine called the Alzheimer Association.

Chapters of the Alzheimer Association all  across America are dropping like flies. Many don't know or won't admit this. The latest debacle is the AA wants to take all of the local chapters funds they raise, take them, and then dole out the money, their money, back to them as they see fit.

Obviously this is never going to work. What is going on here is the great money making machine is hurting for funds. Funds that make payroll, funds that keep the lights on.

It's a sham. Back when I first stated this journey, I thought the AA was the best thing since sliced bread. They are not. Don't take my word for it, research some chapters and how they are actually losing the money they raise and have to send it to the home office if you will.

The Alzheimer Association has lost its way. The CEO makes just shy of one million dollars a year in salary alone. It's like legalized theft.

We do more here everyday by accident than the AA does on purpose. Yet we get posts all the time about someone donating to them. It's absurd, but it is your money and I would never tell anyone who to donate to.

It's just mind boggling to me that you have a site right here that is open 24hrs a day, seven days a week, we take no time off. We don't have a certain month we designate for dementia awareness we do it everyday.

For those who question what I am saying, do this. Post anything at anytime on Mp. Ask whatever is on your mind. I guarantee you within two minutes you will start to receive support. Two minutes.

Now, take that same question and call the Alzheimer Association's 800 number. Let me know what they said. I already know. But the difference in the reply should astound you.

Like I said, Im not here to demean any organization. But you have to realize what we have here. It's not about Rick Phelps. It wasn't in the beginning, and it isn't now.

It's about you. Our members. I am humbled by the thank you's I get here for the posts that I do. I really am. But in my mind, it is just the right thing to do.

I wish other organizations would to what we do. Talk to one another. It woks. We are proof of that.

What would you pay for the support you have gotten here? Can you even put a price on what we do?

I think not. I truly believe that Mp is priceless. I once asked someone what it is worth to them. And the answer were the same. You can't put a price on salvation.

Mp will be here long after I am gone. And Mp will be here even when a cure comes along. Because no matter a cure or not, we will always have people suffering from dementia.

We will do what we do. Changing lives, one person at a time. The way it should be, together.

©   Rick Phelps 2016