May 3, 2011

tion bringing awareness

Issue No. 3

The Memory People Page

~Special Birthday Tribute Edition for Rick Phelps, Our Founder~ For this weeks 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 Alzheimers Disease. But theres more to this story, and weve 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!

one person at a time

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. There they 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. 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 thats all about.

It was then "Memory People" was born. I knew I needed to start a site, in real time, with real names of real people.

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. Thats how I remember it.

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May 3, 2011

Issue No. 3

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 about being 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 page was Alzheimer's. 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 my brain came the word that I couldn't remember was Alzheimer's. up with Memory Normally, that would keep me from finishing the sentence if it People. I think that was not the last word, but in this case, my brain came up with Memory People. I think that Donnamarie liked it, so she told Donnamarie liked Rick. Then Rick asked me if I would mind if he changed the it, so she told Rick. 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 done by 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.

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May 3, 2011

Issue No. 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 I can 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 theres 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 its 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!!

Get Busy Living.. ..or Get Busy Dying ~Rick Phelps

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 we loved 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!

Chicken Soup..
Hero: a man of distinguished courage or ability, admired for his brave deeds and noble qualities. Rick, we all know you dont 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!