December 19, 2012 Issue No. 10 The Memory People Page ~ Special Convention Issue ~ This is a special edition of our Memory People newsletter to reflect on the time we had together December 7 th through the 9 th , 2012 at our First Annual Memory People Convention. We had about 35 members convene at the Hampton Inn in Secaucus, New Jersey to take part in this We had billed this as a convention, the First Annual Memory People Convention. But Harry Urban gave it a much more appropriate and defining term; a reunion. It didn’t take long after we began to arrive on Friday afternoon to realize that we were witnessing a family reunion, between people that had never met, never looked in each other’s eyes, and never shared a hug. That is what we’ve always said we were, and the Convention became proof positive that indeed we are not just an internet support site. We are a family. ground breaking milestone for our group. Patients, caregivers, and advocates were there for the weekend, and Rick said it perfectly. He said “As I looked around the room, I didn’t see patients and caregivers… I saw family”. And that’s what we were from the moment we met. We realized that we didn’t skip a beat from the typed words in Memory People to the Conference Room in New Jersey. We’ve shared our hearts with each other for two years now, each of us facing some sort of memory impairment or dementia in some way. Some have only been with Mp for weeks or months but as we met together for those days we realized that we had come to know each other from the inside out. There were tears during the Candle Ceremony as members stood one by one and shared about Mp and their journeys. We shared more tears, sweet tears of joy and happiness as we laughed together. Rick and Harry were, without a doubt, both on their game. Rick Phelps and Harry Urban lighting the first candle of the Candle Ceremony Cont’d p. 2…
Transcript
December 19, 2012 Issue No. 10
tion
The Memory People Page
~ Special Convention Issue ~
This is a special edition of our Memory People
newsletter to reflect on the time we had together
December 7th through the 9th , 2012 at our First
Annual Memory People Convention.
We had about 35 members convene at the Hampton
Inn in Secaucus, New Jersey to take part in this
We had billed this as a convention, the First
Annual Memory People Convention. But Harry
Urban gave it a much more appropriate and
defining term; a reunion.
It didn’t take long after we began to arrive on
Friday afternoon to realize that we were
witnessing a family reunion, between people that
had never met, never looked in each other’s
eyes, and never shared a hug.
That is what we’ve always said we were, and the
Convention became proof positive that indeed
we are not just an internet support site. We are
a family.
ground breaking milestone for our group. Patients, caregivers, and advocates were
there for the weekend, and Rick said it perfectly. He said “As I looked around the
room, I didn’t see patients and caregivers… I saw family”. And that’s what we were
from the moment we met. We realized that we didn’t skip a beat from the typed
words in Memory People to the Conference Room in New Jersey.
We’ve shared our hearts with each other for two years now, each of us facing some
sort of memory impairment or dementia in some way. Some have only been with Mp
for weeks or months but as we met together for those days we realized that we had
come to know each other from the inside out.
There were tears during the Candle Ceremony as members stood one by one and
shared about Mp and their journeys. We shared more tears, sweet tears of joy and
happiness as we laughed together. Rick and Harry were, without a doubt, both on
their game.
Rick Phelps and Harry Urban lighting the
first candle of the Candle Ceremony
Cont’d p. 2…
December 19, 2012 Issue No. 10
This is what you saw everywhere you went… big
smiles, and much happiness! Pictured: Miss Kathy Sly
Some of our Convention Attendees at Swarovsky in New York:
Cindi Miller, Lee Deafenbaugh, Linda Deafenbaugh, Teri Vogler,
Harry Urban, Hazel Urban, Delores Schiraldi, Michele Tabat
DeSocio, John DeSocio
Harry Urban sporting his very special Christmas gift... a new hat, with hair!
Harry Urban and Pauline Baker
Leeanne Chames and Cheryl Stevenson Kearney, sharing a
real life hug.
Rick Phelps and Harry Urban… doing what they do so well!
Delores Schiraldi and Michele Tabat DeSocio
December 19, 2012 Issue No. 10
Rick Phelps ~ Patient
Everything. That's what our "Family Reunion" meant to Phyllis June and I. To get to meet
everyone face to face.
To hear their stories, which are "our" stories. I sat in the restaurant Friday night and looked around for the Alzheimer patient. I could not find one.
I looked for the caregiver, again I could not find one. What I did see was 35 or so people, sitting together, having the time of their life.
We left the disease behind. We left the stigma behind. We need to teach others to do this very thing. We are much more than patients, much more than caregivers.
We are Family. We just happen to have one thing in common. And it's not the disease,
it's the love for one another. Much more important than any breakout sessions one will attend, or any long boring speeches.
We all told our story, we spoke from the heart, not the mind. We were so proud to be there. There was love and compassion everywhere you turned...
Phyllis Phelps ~ Caregiver
I think the best thing I came away with is the fact that everybody seemed to mesh so well. It was like we have known each other for years. The love, thoughtfulness, sincere
caring, laughter was just overwhelming to me. Also the fact that some of the members took their own time and money to make and donate gifts to each and every one that attended. How very unselfish this was. KUDOS to you.
It was so good for me to be able to put a face with the mind and the fingers that post every day. Then there is Harry, such a great person! I am so glad that Rick has Harry
to keep him on his toes, someone he can share laughter, tears, serious business, and “monkey” business with. I am also thankful to Hazel because behind every great man there is a fantastic woman! Then there is Leeanne. My, my, my, now there is a lady! I
know for a fact that Rick wouldn’t have a clue without her, and for me, well, I would be lost also. THANK YOU LEEANNE!!!
In conclusion, I am so very grateful to every one in Memory People. I know this is what Rick looks forward to, usually on a daily basis, to be able to communicate with you all.
GOD BLESS YOU ALL.
Cont’d next page…
Some words from our Convention Attendees:
December 19, 2012 Issue No. 10
Ruthie Rosenfeld ~ Caregiver
I went to the convention on Saturday and had to push past my shyness to walk in the
door. I was immediately met with hugs and personal connections that were heartfelt
and deep. It only intensified from there. It was so great to share laughs, stories and
tears with everyone there.
We are all dealing with different degrees and experiences of this disease. So it was
almost unnecessary to talk about it. It was so important to touch and be touched
however. I am very grateful to MP for coming to NY. It meant so much to me to see
the enthusiasm about New York itself. We tend to take so much for granted living here,
seldom actually going to experience the sights we see every day.
So thank you, Queen Pauline for having a birthday, for bringing your best friend, and
your very handsome son, and to Leeanne, Rick, Harry et al for picking up the convention
ball and running with it. I would also like to thank the anonymous donors, who silently
gave us all a chance to gather. Much love and thanks.
Pauline Baker ~ Caregiver
I was so excited, I could have burst. Sitting at the table waiting and watching the door
open and a friend to walk through whom you have never met before but had talked to will live in my heart forever and a day. Two days in my life. I lived in the day and hugs for real are just amazing. A family gathering filled with love and hope, I cherished every
minute.
Kathy Sly ~ Healthcare Professional
It was about being open to the possibilities.. about hugging people that you are
connected with at a soul level... pure love... pure joy... pure excitement... hope for everything and all of us... inspiring to do more.... I was told I giggled and I have not heard that in 15 years.... amazing....just pure love...
Harry Urban ~ Patient
Our Convention meant more to me than any family reunion. A group of people that got
together and totally dropped the walls we put up to hide who we are. Everyone opened up their heart and shared pure love. We shared stories that we would never share with anybody else. We walked away with everlasting friendships.
John De Socio ~ Caregiver
My wife Michele has been a member of Mp for awhile. She has told me a great deal about your group of fine people. It was very interesting to hear all the stories from everyone. l felt like I knew everybody. When I went to the convention I felt the
closeness I wanted to be part of it so I decided to become a member and share my feelings. Thank you from my heart for accepting me into your family.
Where do I begin. MP has been a God Send. I felt love from the moment I joined. Yes it is much more than a support group it is a family. To meet this wonderful family
at the convention just confirmed what I already knew in my heart. We are not a virtual family we are a real family. The love in the convention was genuine. I felt it in every hug, every conversation, every laugh and every tear. Although we had never met the
moment we did I was at home. No fear, no anxiety, and mostly no Mr. A.
It was very special having the convention in my own home. It afforded me the opportunity to give a very special gift to a very special member, Harry Urban. To see him and to witness Hazel watching her husband see the Christmas tree at Rockefeller
Center all lit up at night was magical. It was as if all his "lights" were beaming as bright as the Sun. I think it helped him to realize that he is special and loved for who
he is as a person. You could see it had a profound effect on him. He was not Harry the Alzheimer's guy he was Harry the sweet generous kind man that he is. This was a gift filled with nothing but pure love. Also it was pretty cool that our 2,500 member
was in the room with us and just happened to be my husband.
We accepted each family member for who they are, not by the stigma of the disease. For me like Rick said it was our first family reunion. Although we are bound by it Mr. A
was not present. The only people I had the privilege to meet were indeed my brothers and sisters. The convention reaffirms we are a REAL FAMILY and will remain one forever. I love MEMORY PEOPLE.
Delores Schiraldi ~ Caregiver
What an awesome experience. To meet and hug. The laughter, the tears shared with friends that I only typed words to before has changed me. I’m grateful for my MP
family, and to be the voice my mother no longer has. So looking forward to the next convention and to meet and hug those who were with us in our hearts.
Teri Vogler ~ Caregiver
It is hard to express just how meaningful the weekend was for me. It was a respite from the daily caregiving for sure, it was a real meeting of friends and family that I
have made and shared so intimately with over the last several months. I felt so loved and accepted by everyone. I learned so much from everyone that is or has been
where I am in the journey.
If not for Memory People I would not be able to care for my Papa at home. This group has helped me understand what I need to be able to walk this journey. Thank you
I have been telling my friends that words cannot even begin to describe what the
entire weekend felt like to me. It was an exhilarating experience. It felt wonderful
getting real life hugs from everyone instead of cyber hugs. I so agree when it was said that memory people is more than an online support group and that it’s a family. I felt like a welcome member of the family from the very first moment of being added to the
group. It has helped me so much to know that there are people out there who know what I am going through.
I was new to this disease. I told my husband, I am used to dealing with cancer, it took
both of my parents from me. But this is something entirely different. It’s not a disease of the body, it’s a disease of the brain/mind. It was hard to fathom at times
how it was possible to be so close to people that you have never met. I cried when I met some people and I especially cried when I left. That was only after being together for a weekend. But then, I thought, it was a lot more than that. We have been
together for a year and a half and it made more sense. It was like I was saying goodbye to family. And the sad part about it was not knowing when I would be able to
see them all again.
Mary Howard ~ Patient I am so thankful for memory people and the Convention. I had a great time meeting
people who understood me and didn't laugh, yell or call me stupid. I didn't have to worry about people wondering what's wrong with me. The only upsetting thing that
happened was that I lost my car keys, thank God my Mom carries a spare. My Mom was so glad we went also. She had a great time. She said that she was so happy
watching me laugh and have a good time. She even said that I'm doing much better with the depression since I've joined Memory People (I don't remember when I started but it was this year).
Linda Deafenbaugh ~ Caregiver I cannot imagine ever not being involved with all the wonderful people in MP. Before I
was brought to this group, I was wondering aimlessly trying to find answers. This group is a true blessing and gift from God.
Having been able to make the trip to meet up with some of the people in this group has meant the world to me. It also has made a difference in Lee. Prior to this trip, I
have had a very difficult time trying to get him to express his feelings about dealing with this disease. At the conference and also since then, he has actually started to
open up a little. He has found that having a diagnosis does not mean the end of the world and that he is not alone in this journey.
Being the caregiver, I know there are still a lot of mountains to climb. I also know now, that there are many people out there making this journey and are there to help with
I am flattered to be asked to share my thoughts in my new family of memory impaired and care givers and loved ones.
I am memory impaired and to have all care givers appreciated, we gathered in a New
Jersey Hotel to converse between each other and what is the next step. In my lifetime we can try to help find a cure so others don't have to suffer. It is so hard to adapt to a new lifestyle in the state that I live in. I am still alive and I will not give up without a
fight for the rights of all people with Alzheimer's. We just don't recollect.
As we met in a group, we started conversing about the tribulations of life and how to cope with it. Knowing that you are not the only person in that situation is comforting,
to be able to talk to others and to jump new hurdles. Then we can go on with our lives that may be a little different in how we do things but are still fighting back. Hopefully someday others will not have to suffer thinking they are alone in this fight.
As for me, I help a friend at his auto shop. It helps him out and still allows me to be a
part of society. Don't count us out, we are the same as you are. I also self occupy myself. I take long walks to clear my mind and at the same time pick up discarded pop cans. This helps to keep me physically active and doing community service along
the way.
Thank you for giving me the opportunity to share my thoughts. I hope it helps. Love you, Lee
Lorena Demian ~ Caregiver
Words cannot express how much the MP Convention in New York meant to me. I was warmly welcomed when arriving at the hotel by other MP members, it was so nice to
finally be meeting my MP family and exchange real hugs and conversation with each other, you could feel the love in the room. The visiting continued in the meeting room
and then at Cheeseburger in Paradise where we all went out to eat at. What an amazing first day at the convention.
The next day we divided into groups and went into New York to see the sights. The city was simply breathtaking and I could not believe I was actually there. It was
incredibly cool with lots of sights to see and pictures to be taken. I even got a picture of the tree at Rockefeller Center but soon it was time to head back to the hotel for the
convention. When we walked into the room for the convention, we all signed a guest book before
sitting down. I enjoyed listening to Leeanne, Rick, and Harry speaking. We watched a
slide presentation of the memory board which for me was very emotional seeing slides
of everyone's loved ones affected by this disease but what I didn't expect was how
hard it hit me when I seen my son's picture and then right after a picture of my
Grandparents.
December 19, 2012 Issue No. 10
After the slide show, we were all given the opportunity to say share our story and
what MP meant to us before eating. This was a night of compassion, love, and family.
The next day we all said our Good Byes and went our separate ways, our lives forever
changed. This will be a weekend I will remember fondly forever and was the best
weekend ever for me. Before I found MP I had lost myself and felt so all alone and
now I have learned I must take care of me to take care of my son, it is so good to
know none of us are going through this by ourselves and to have a safe place for
supporting each other. MP is truly a support group for memory impairment like no
other, a family.
Leeanne Chames ~ Advocate
The convention marked a milestone in this journey we’re all taking together as
Memory People. We had said so many times that we were going to redefine the word
‘convention’. Little did I know the extent to which we would do that. I was amazed
that we didn’t skip a beat from typed words on Facebook to seeing each other face to
face.
The hugs and tears, sitting and talking over coffee in real life was the icing on the
cake that we already have every day in Mp. I realized that we truly already knew
each other, we had just done it differently… we had met first with our hearts, bonded
together in our pain, sight unseen. And we built relationships based on love and
compassion that really did span the miles, and the continents.
As I looked around the room I became overwhelmed with the reality that all 2,500 of
us were really there. In Mp we say we go this together, walking this in our hearts,
and that was never more real to me than in those moments together. It was a
precious time, with my Memory People Family.
~~~
Thank you Rick Phelps, for thinking of us all two years ago when you
created Memory People. Because of your desire to help others and make
the world a better place, we all have a place we call home.
We are truly “bringing Awareness, one person at a time.”
December 19, 2012 Issue No. 10
As promised we have a new column in our Memory People Page
newsletter. Harry Urban will be sharing a story, a bit of advice, or
some thoughts from the heart in each issue. So without further ado,
here is this month’s Urban Tales…
Back in my day we didn’t do the laundry, we did the wash. Friday morning was
always wash day. That was the day you didn’t mess with mom. She had wash to do. Our washing machine had four legs with wheels. It was a wringer washer with rollers up at the top and a crank. Nasty machine, you turn that crank and every
drop of water was squeezed out of your clothes. Us boys always had the job of pushing the washing machine over by the tub, we didn’t have a sink just a tub.
I remember it so well, mom never sorted the wash she just made a big pile on the floor. We didn’t have delicates so that wasn’t a problem. Everything went on that
pile. She would grab that box of Tide and bottle of bleach and got down to business.
She would walk over to that pile, reach down, and grab a big armful of whatever and stuff it in the washer. For some reason it didn’t matter if the underwear got
washed with bed sheets. Whatever she grabbed, went into the washer.
This washer was huge. You could put all the sheets, blankets, pillow cases and a couple pairs of soxs in the same load. It had this thing in the middle that just turned back and forth cleaning the clothes. It was something like beating your
clothes against the rocks. It only had one cycle, grunt and groan. It sure did a wonderful job and by the time it would stop, everything was clean.
The spin cycle wasn’t invented yet so you had to take the clothes out of the water and put them through the wringer. You turn that crank and every drop of water
was gone. Women back in those days had bigger biceps then most men. Next came the drying process.
We had to lug that basket of wet clothes outside so she could hang up the wash. I
don’t remember how many loads she did but by mid morning the wash was done until next Friday.
~~~
December 19, 2012 Issue No. 10
The Memory People Page is a publication of Memory People™, an Alzheimer’s and memory impairment support and awareness group on
Facebook. If you would like to start receiving this newsletter, please email [email protected] and we will be happy to include you on our email list.
If you or a loved one has been touched by a memory impairment, if you are an advocate, or if you just want to know more about these diseases, please join us at Memory People. Just type ‘Memory
People’ in your Facebook search bar and click on ‘Join Group’.
“bringing Awareness, one person at a time…”
Our 2,500th Member
We had the privilege of adding our 2,500th member during our First Annual
Memory People Convention. One of the members and her husband were there, and
he decided to join Memory People on the spot.
Michele Tabat DeSocio’s husband John was welcomed to Mp with real life hugs,
and a real life welcome speech.
Here’s to the next 2,500!
Please feel free to share this Newsletter with family and friends. We are all about support and awareness in Mp, and if this reaches just one that finds it helpful and helps them in this journey, then we’ve succeeded. Thank you!
