Thursday, November 26, 2015

Happy 5 Year Anniversary Memory People

Today, five years ago I was looking for a vehicle in which patients, caregivers, family members, and advocates could be together, share their stories, talk about their struggles, and support one another.

I went to a couple of organizations that had message boards for dementia patients. All I seen separated the patients from the caregiver and even families.

There were even sites that if you had any form of dementia, depending of what type, there were different pages that would indeed once again separate the patients by what type of dementia they were diagnosed with.

I think the biggest thing I disagreed with, on many sites like this no one used their real name. Only some nick name. And all posts were not monitored and there was no fact checking what so ever.

You wanted to post about something, no matter how absurd, you could do that. And you need not use your real name.

Now how many of you can take anything anyone with the nickname "Blackjack" or "Cupcake" take anything they say seriously?

I couldn't and was determined to change this. At least, have a site where people actually were there under their real name, and the posts were true, not some fabricated thing past on from some internet site.

I also wanted patients, caregivers, family members and alike to be together on one site. All sharing their experiences. I was told by some very prominent people in the dementia world that this would simply not work.

"You can't have patients and caregivers together", I was told. My answer then and still is "Why not"?

Of course you can, and you should. All this boils down to perception. Or the way others think things should be.

You will be hard pressed to find anyone who praises the Alzheimer Association more for what they did for us. However, it is my personal feeling that what they do and where they spend 90% of their donations is too research.

And that is great. I am glad they do this. And they do it better than anyone else. However, because of their name alone, everyone feels they have the best and only way to offer support.

And that simply isn't true. Many times we are asked, "What do you do, on Memory People, that is different than the Alzheimer Association"? I tell them everything we do is different.

We don't separate patients from caregivers or family members, we don't have different pages for different types of dementia, when you go to one of our Memory People Support Groups™ you will not see caregiver and family members only.

We have patients, and we have people of all ages. We don't say, "you can't come to our support groups because you are not at least 45 years old".

And we don't say, you are not permitted because you are a patient. We do allow patients, caregivers, and family members to attend our support groups.

Not to do so, is in my opinion absurd. Everyone here knows we learn from one another. The good, the bad, and the ugly. We don't sugar coat anything and we don't believe in false hope.

You want to post about coconut oil being something that slows the progression of this disease? You will have to find another site to do so. The fact is for example is that coconut oil, or any other oil for that matter does not slow the progression of dementia.

Nothing does. Nothing. Now you can find many sites and articles on the internet that disputes this and does indeed claim that coconut oil slows the progression.

Here is my thing. If it did, a 8oz jar of coconut oil would cost you hundreds of dollars. You think that the makers of coconut oil would knowingly have something that slows dementia, yet charge about three bucks a jar?

Of course they wouldn't. And on top of that, every jar would plainly state that coconut oil, fish oil, or whatever does indeed slow the progression.

This is why I created Mp. What you read here may be difficult, but everything you read here is indeed true. It isn't something that someone copied and pasted off the internet.

We do ge those from time to time, but these types of posts are asked to be removed, and if they aren't, we indeed remove them. There are many, many people who make a whole lot of money off of dementia with all the false claims.

They won't do it here. What we have is Hope. Not false hope. Everyone wants a cure. Every patient would love to have a drug that would just make their day more bearable, more tolerable.

We're not there yet. That is the simply the truth. We will be, but we are not today.

Here at Mp we are all about Awareness and Support. We don't talk about cures, or other drugs that can do this or do that. We leave that to the procrastinators.

We also believe in research. But what we are all about is Awareness and Support. We want to tell the world the truth about dementia, we want to bring Awareness and knock down the stigma that goes with dementia, the denial, the senseless claims of a demanding a cure by 2020.

Who are such demands geared toward, and what is anyone going to do if a cure isn't found by 2020? Nothing. That's what. Keep trying. Keep researching.

But in the mean time, we will be here, helping you get through today. That is what is important. If a cure was found in 2020, it would be decades before it filtered down to us regular people.

And I won't even bore you with the costs of what it would cost the average patient. It would be and will be astronomical. It's how the system works.

But in the end, and all during this whole time, we will be here helping one another. Helping each other to get through today. Because deep down, it's all we have right now.

And it is the best thing that there is. Bringing Awareness and offering Support. It's what we do. And have since November 25, 2010.

The day Memory People was born...