Memory People Page (Vol 1, Issue 3)

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May 3, 2011 Issue No. 3

tion…bringing awareness

one person at a time…

The Memory People Page

~Special Birthday Tribute Edition for Rick Phelps,

Our Founder~

For this week’s feature, we are going to take you back to the beginning of Memory People™ . Rick started this

group out of a need for real-time interaction for those

touched by Alzheimer’s Disease. But there’s more to

this story, and we’ve asked Rick and a couple of the very

first members to share the first moments of this journey

with us.. We hope you enjoy it!

Rick Phelps:

I was sitting at my kitchen table, a beaten man. I had been trying to research, and Google Alzheimer's

the best I could on the internet. One will find with this disease, you lose the ability to comprehend what

you read. So that, as you may guess was very difficult. I did however, find a site called Alz.org. Therethey had what they called Message Boards. I went on them. And found them to be confusing at the very

least. There were maybe a dozen different "rooms" to choose from. Anyone who knows anything about

AD, should know we don't make choices well. So that was hard right away.

I found a "room", and there introduced myself. Then asked a question. Nothing earth shattering, just a

basic question about AD. I waited. And waited. Not knowing how this worked, I soon learned. Seems it is

"manned" by volunteers who for lack of a better word, watch over the site, and answer questions. If

you're lucky, someone see's it. If not, you wait.

“ It was then

"Memory People"

was born. I knew I

needed to start a

site, in real time,

with real names of

real people.”

Well this might have been working for them, but it was totally

unacceptable to me. How could anyone expect an AD patient to wait

hours or days on an answer to a question, when chances are, they won't

even remember the question once someone gets back to them.

It was then "Memory People" was born. I knew I needed to start a site,

in real time, with real names of real people. Another thing that bothered

me on Alz.org message boards, people used nicknames, like they were CB

Truckers or something. I still don't know what that’s all about.

But I wanted to create a site, on Facebook, where real people, with real names, in real time, offered

support and suggestions to their questions. Like a bunch of friends, sitting around having a cup of

Coffee.. It started out slow, but soon caught on. I never knew that a simple idea could help so many people. We

are changing lives, on Member at a time.... And the date I started MP....the day before Thanksgiving,

2010, at 5:00 in the morning. That’s how I remember it.

Article continued on p.2..




Donnamarie Baker:

When I was first diagnosed I had a hard time accepting it. Once I did, I tried to get my hands on

whatever information I could. Found the ones that meant the most was from other people with AD.

And there was not a lot out there. I found the message boards on Alz.org and would read the posts.

You never really "talked" to anybody though. One day I met a woman who also had EOAD. Man, we

talked for about 2 hours! What a difference that made to me. As my reading skills faded, then

left, I found myself playing Facebook games more and more. Then I saw the post from Rick aboutbeing on Facebook. And Cheryl and Kathy as well. So I found them and we started talking. And it

was just like talking to that lady. These were people who "got it". And that meant the world to me.

The real time interaction, the understanding; it is so true that as well-intentioned people are, unless

you have experienced it, there is not that immediate connection. From those early days a whole new

world opened up. And it is one that has continued to sustain me, and help me, and pick me up when

needed. And most of all helped me not feel so alone. I have always been very independent and the

worst part of this is watching yourself slip away. It is still early for me and I have a long way to go,

but I know I will never be alone as long as you are all here with me.

Cheryl Stevenson Kearney:

I think that the timeline for starting Memory People and the first few members is this: Rick posted

on Alz.org about a Facebook page on Nov. 25, 2010 at 4:38 am. I don't remember, nor can I figure

out whether it was Kathy B. or I that was the first member that Rick added. I do know that after

Kathy and I, it was Donnamarie, Lynne, Jill and then Tom. I also remember that the first name for

our a e was Alzheimer's.

“… my brain came

up with “Memory People”. I think that

Donnamarie liked

it, so she told Rick.”

Then a funny thing happened when Donnamarie and I were

chatting on Facebook. When we were chatting, I had some

problems with word retrieval. What is pretty funny is, I think

the word that I couldn't remember was Alzheimer's.

Normally, that would keep me from finishing the sentence if itwas not the last word, but in this case, my brain came up with

“Memory People”. I think that Donnamarie liked it, so she told

Rick. Then Rick asked me if I would mind if he changed the

page to Memory People, and I said not at all. He said that he

thought it would better reflect the members. He wanted it to

include all kinds of memory impairments & dementia.

The first time that I met Rick Phelps was on Alz.org. It was in July 2010, soon after his diagnosis.

He had posted and was looking for some support. I had been on Alz.org since Sept. 2009. He was

confused and I was there to give him some information and support. Rick posted several more times

and got responses from other members and myself. Then in Sep. 2010, I hadn't seen any posts doneby Rick, so I got a little concerned. I made a post that was titled ”Attention Rick P. from Ohio”. I

said that I hoped he was doing well and would like him to check back and give an update on how he

was doing. On Oct. 5th, Rick posted, thanking me for asking about him. So Rick and I had formed a

friendship on Alz.org. When MP first started, there were several of us who were adding to Rick's

original post. We included the link to get there and updated how many members we had. I could

hear the excitement in my posts from back then. I was very excited to be on MP. On Dec. 13, 2010,

I had posted that we had 43 members.

Article continued on p.3..




If you asked me what Memory People means to me, I would have a hard time using just one word. It

means, friendships, family, but most of all support. Before Memory People, I didn't have any support

group. I had no one who I could talk to about living with a memory impairment who really understood.

Memory People has changed my life because I feel like I'm a lot less stressed. On Memory People, I

can talk about the problems that I'm having with my cognition. Sometimes these are things that I

don't want to talk to my family about because I do not want to worry them. Not only do I enjoy the

support that I receive, but I greatly enjoy supporting others. I hope that by sharing my story, that Ican help other people. I have learned so much from caregivers, as well as other memory impaired

members. I am so grateful to Rick Phelps for starting this group!

So there’ s the story! In addition to Donnamarie and Cheryl, Kathy Bostwick, Jill Jaime

Kulch Newmann, Lynne Debruler-Culipher, and Tom Minor were some of the very first

members here at Memory People. In just over 5 short months, we have broken the 550

mark, as of the time of this writing. We are bringing Awareness, one person at a time,

and giving each new member the support and love they need on this journey. Great

things are happening here at Memory People, and it ’ s just the beginning..

We have a very special birthday to celebrate this week in our Memory People family! Happy Birthday, Rick!!

We want you to know how much you are loved and

appreciated, for all you do and all you are, to so many

people. You have changed lives. The things you have

done will be a legacy forever, in our hearts and all

those that will come to know Memory People in the

years ahead. So, thank you, we love you, and wish you

the Happiest of Birthdays!!

We are very happy to announce that

Linda Daniels has won the contest

for naming our Newsletter! Great

Job, Linda! Linda came up with the

name The Memory Page, and weloved it, but as we checked to see if

it was used anywhere, we found it

was a website name, so we added

‘ People’ to it, and The Memory

People Page was born! Linda, we

want you to choose something from

the Memory People Merchandise

store.. Thanks for your

contribution!

“ Get Busy Living..

..or Get Busy Dying ”

~Rick Phelps

Chicken Soup..

Hero: a man of distinguished courage or ability, admiredfor his brave deeds and noble qualities.

Rick, we all know you don’t desire the limelight, but this

week, as we celebrate your birthday with you, we want

you to know the difference you have made for all of us.

You, by dreaming of a different world, have pulled so

many out of a pit of despair. You have encouraged,

counseled, and poured your heart out to us time after

time. So, like it or not, you are, by definition, a hero. Our

hero. Thank you, we love you!

Documents

Memory People Page (Vol 1, Issue 3)