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Aloha Kakakiaka (Good Morning in Hawaiian)
I like to begin with a poem for smiles and understanding. It
is about me but not written by me. The author is unknown. Hopefully
this will get some smiles and make my speech a little light. Smiles
and laughter are a big part of my life and I cannot think of it
any other way.
My forgetter is getting better
My forgetter is getting better
But my rememberer is broke
To you it may seem funny
but to me that's no joke
For when I'm here I'm wondering
If I really should be there
And, when I try to think it through
I haven't got a prayer
Oft times I walk into a room,
Say what am I here for?
I rack my brain but it's all in vain
A zero is my score
At times I put something away
Where it is safe, but gee
The person it is safest from
Is generally me!
When shopping I meet someone,
Say hi and have a chat
Then when the person walks away
I ask myself WHO'S THAT?
Yes, my forgetter is getting better
While my rememberer is broke,
And it's driving me plum crazy
And that isn't any joke.
My name is Jeanne Lee and I am here today to bring you some information.
A bit about myself before and after my diagnosis, A little about
my book "JUST LOVE ME" A Life Turned Upside down By
Alzheimer's and information on my group DASN International
I hope to inform you on early stage dementia's. Maybe when I
am finished explaining our Advocacy group you will also become
a part of this journey we are undertaking.
Alzheimer's is only one of the many dementia's. Dementia is the
umbrella under which there are Huntington's, Parkinson's Frontal-temporal,
Multiple Sclerosis and several more including AD.
My mother was diagnosed with AD in 1985 at the age of 71. Most
of us in hindsight had the disease many years before diagnosis.
In fact latest statistics say even up to 40 years. One goes through
the usual embarrassment of hiding or making excuses for our behavior.
We chock it up to anything happening in our life and even think
we are going crazy. My mother passed away in a nursing home never
having the help of drugs 'til it was too late. This should not
have happened. The information should be out in the open for all
to get the help needed to slow down the disease and give each
person a chance at the best life dementia offers. And as you can
see it is not all that bad. It has given me a real reason to live
"to help people".
Having dementia is like starting in the fourth grade and going
backwards. My math, spelling, vocabulary, and history began to
chip away. My thoughts of what use to be, became the past. In
my case that included hairdresser, teacher, principal, owner of
a hair and nail salon, a restaurant and bar, a printing brokerage
and I even flew planes. My biggest claim to fame is my children
and 13 grandchildren. All very supportive of me, thank the lord.
My new journey is more important than most of the things I was.
I first noticed problems beginning at
the print shop. I was assistant manager and went from a great
raise to having to quit in less than a month. I was always one
of those who could remember anyone's name. The jobs, the bidding,
the employees all came easily to me. Soon I was forgetting them
all. I had to keep the names under the cash register to appear
normal and call people by name. I had developed enough coping
skills to cover, except for one good friend who asked me to go
to the doctor. She explained that she knew I was having problems
at home but that there was something more serious.
Soon after I went to the doctor and had two day tests of 8 hours
each. Much to my surprise I could not count backwards by 7s nor
could I tell the specialist what the paragraph was about that
he just read. He after some time said it was dementia probably
caused by stress, depression and alcohol. He said it would not
get better but probably would not get any worse. He said I needed
to quit work and get on disability. Well, no one was going to
tell me at the age of 54 that I could no longer work. I had worked
from the age of 8 in the berry fields, through my children, illnesses
until this day. I quit drinking and tried to get out of depression
and continued to work. None of this seemed to help it was even
getting worse. Other people close to me noticed that I was not
myself and got me to see a neurologist. It was about that time
I began to think AD but I was way too young to have that and blamed
it too on anything that was happening in my life. The neurologist
said because I could tell him he had a pencil in his hand and
I lived in Hawaii and could walk a straight line that I did not
have AD even though some of the tests he gave me had abnormalities.
After a few more tests I told him he was an Antique with no value
because I had begun looking into earlystage AD, and knew the pencil
tests etc. were for later stages. This outburst was not like me.
Outbursts like that are a regular thing with dementia.
I wore my dress to work inside out and thought "oh I didn't
know this dress had these flaps." It turned out to be the
pockets inside out but I did not reason that. Losing common sense
is another sign of dementia. Losing your car in the parking lot
may not be a serious thing, but I drove my car to the parking
lot and took the bus home, never wondering where my car was. In
fact I think I forgot I owned a car. Another sign of dementia.
A fender bender does not mean you have dementia but stopping at
a stop sign, seeing a car coming close and going anyway and hitting
the back of the car probably is. This was one of the hardest things
... to give up driving. A very large part of my independence was
now gone.
Please none of this is to belittle doctors but to alert people
there are doctors out there that do not keep current with their
profession as well as wonderful competent ones who do.
I had three more doctors who all said they could not rule out
AD but thought not. I thought I was losing my mind. I could go
to a movie and not know what I saw when I came out. I went to
a concert with friends and at intermission I went to the bathroom
and called my boyfriend to tell him I think I was lost. He talked
to the person next to me and came to get me. This is surely a
sign to seek help.
The Spam went in my boyfriends underwear drawer and the iron
in the refrigerator. It would take me 5 times up and down the
elevator just to do the wash. I would forget birthdays of my children.
I tried suicide and drugs and went back on alcohol as they covered
it in my mind but not in anybody else's. I was seeing a psychiatrist
who would prescribe my pills over the phone. I only saw him three
times in 8 months yet he kept up my monthly prescription. The
next one was one who sent me home because I was sobbing and he
could not help me in that state.
Then I had another test and the same things all had gotten worse.
I'd had it with neurologists and testing (this reasoning is part
of dementia) so went to a Psychiatrist, MD. In one year she put
everything together and got all the tests and had more taken and
discovered I had at least 7 of the ten signs in testing for early
stage. She also found a great deal of brain shrinkage from an
earlier test result and then came the PET scan. She said now Jeanne
from what I see in all of these results, plus the year I have
been seeing you, I believe you have dementia of the AD kind. By
this time they were running cell tests at Indiana University on
myself and Mom for comparison.
If you can imagine I just said thank you and jumped for joy.
I smiled and laughed. I was no longer crazy and I had a name for
the thing that was turning my world upside down. I had something
I could tell people the reason for my lack of everything. It had
a name and it was AD. If by chance it was not then thank the lord
but for now I was sane.
Soon after this I began to think how do I talk to someone in my
boat. I checked here and it seemed I
was the only one on all the islands with the problem. So strange
when all over the US and Internationally the Alzheimer's Association's
were having groups for people like me. I began calling, writing,
e-mailing and shouting to anyone who would listen.
My first real person with early stage was introduced to me from
the Vancouver Canada Alzheimer's Assoc. This was a man in Canada
and we talked on the phone 'til neither of us could afford it.
He had a group to depend upon. I had nothing. Right then I decided
no one in my world would have to go through what I was going through
if it took me a lifetime. I was on my soap box to the AD Association
of Hawaii and they said they had no funds to begin a group. Five
or so years later they have not the right person to man it but
they are working on it. I started a group and got help from St.
Mark's, a church on Kapahulu. The group grew from 3-9 in one month
and occasionally we would have it at our homes to make it easier
on the folks that had to travel. I kept it going 2 1/2 - 3 years
and many still call me. It became very draining on me as I needed
the very help I was giving. My TV appearance and the calls following
show a need. I decided if I continue with my book it will reach
more people. In the beginning I was writing it to give for free
just to help others but then the cost got so phenomenal I had
to turn it into a bigger challenge.
Even though I could not spell or keep a train of thought I knew
it would get finished. It did and 4 years later it is at the publishers
ready to help the very people I wanted to reach. The book was
such a challenge and I had so many people helping after one man
left me to continue and find a publisher. This was after $5000.
I gave him this money to help me in the bad times and it was from
$10 to $2500 at a time. With so much help it was so messed up
that I threw it in the closet for almost a year. All the time
knowing I would get the strength to get it out and try again.
One of the ladies who read and helped with editing was an English
teacher of 30 years and said in her review it should be read by
anyone who has the slightest touch with an AD person, doctors,
nurses, caregivers and anyone who wants to learn what it is really
like to have AD. I had an RN friend read it and she said she sees
it being a made for TV movie. I have a list so very long of people
and organizations all over the world to notify the minute it is
available. It makes me cry with happiness and bubble with pride.
A person with dementia is like a turtle in a world of rabbits!
Those of us with early stage diagnosis are capable intelligent
people wishing to be understood. We function a little slower but
we get there. We have much to offer and teach the world and I
am an advocate for this.
DEMENTIA ADVOCACY AND SUPPORT NETWORK NTERNATIONAL. I am a board
member of DASNI and we are growing at such a rate the AD International
and many national and city groups are great believers in us and
invite us to speak all over the world. We have a web site that
has had more than 8000 hits is less than a year. One day we hope
to have a PWID on every Dementia Board of Directors.(Person with
dementia)
1st transparency
Several years ago a few people with dementia met over the Internet.
They discovered people with dementia had a great deal in common.
From this tiny group we grew to a meeting in Montana, elected
a board of directors. At New Zealand Convention for Alzheimer's
International one of our group gave a plenary address and had
a standing ovation. We also had members doing workshops and giving
question and answer sessions after their speeches. We had an attractive
booth set up by PWIDs that was kept very busy.
For this we are very proud and now we will be a part of Alzheimer's
International in Barcelona which will help to acquire a greater
place in this world. I have sent out four proposals for funding
as Hawaii needs this information so badly and have one answer
from our Assoc. saying they cannot help. Five of our members have
been helped by their Association or Pfizer so far and I will be
next I pray.
We have been invited to speak at many national meetings. Many
speak on a state or provincial level and I speak whereever anyone
will listen hospitals, churches, meetings, women's clubs, and
colleges.
OUR PRINCIPALS AND OUR BELIEFS AT DASN INTERNATIONAL
We are autonomous and competent people diagnosed
with dementia and their loyal allies.
We believe shared knowledge is empowerment
We believe our strength provides a supportive network
We are a voice and a helping hand
2nd Transparency
Dassy our mascot received wings when we began to travel world
wide to promote our cause.
Our language already accepted by many is PWIDS persons with dementia,
TABS temporarily able-brained because any time you could join
us, and we like to use care partner in place of caregiver.
3rd Transparency
DASN INTERNATIONAL exists for three purposes:
To promote respect and dignity for people with dementia.
We are people first and dementia comes last. We are intelligent
capable beings.
To provide a forum for exchanging information and encourage suppor.
We use mechanisms such as local groups, counseling and Internet
linkages. Our professional TABs in the group are also a helping
hand. They learn from us and we from them.
To advocate for services for people with dementia.
We expect persons with dementia to have a place to go to talk,
to cry and to know they are not alone. A place to exercise or
participate in group activities. A place to use computers to join
chat groups and learn more about early stages of their disease.
4th Transparency
DASNInternational was conceived by people with dementia and is
run by people with dementia. The majority of our board members
are PWIDs except for a few professionals who have joined our cause.
Hopefully your awareness of our existence will help ensure that
we have new and highly functional persons joining our ranks each
year.
We have members around the world, we have carepartners as members,
medical professionals and Alzheimer's Association Board Members
and Staffers.
5th Transparency
This shows books written by DASNI members. These books given
to newly diagnosed can relieve the isolation of feeling as if
one is alone in their illness. Given to carepartners they can
help explain what they are going through and why, and given to
a professional they can learn what medical books cannot teach.
All of these books can be ordered over the Internet as seen on
our web site.
6th Transparency
We call ourselves Alzheimer's Survivors for we have much to live
for, much to teach and even the hopes of a cure. We are in a journey
from diagnosis which starts with A and goes to death which is
Z. We do not want others to start at P and go to Z. There is help,
there is medicine, maybe even a cure one day. But without early
diagnosis some of these things are too late.
7th Transparency
Some of our group in New Zealand said instead of being victims
we can be survivors living in a world of hope and alternatives,
growth and possibilities. Yes yes yes
8th Transparency
Today my next plan is an Alzheimer's Cafe (started in the Netherlands)
where all the hopes for Hawaii's Dementia Persons can be found.
We will have outings, chats, speakers, cry, laugh, eat and just
enjoy each other. When the Alzheimer's Association adds to this
plan with their early stage group we will have a wonderful setting
for early to middle stage people with dementia's. We can all work
together for the same cause.
If I choke up on this one sorry.
Alzheimer's Patient's Prayer permission to use by Carolyn
Haynali Author (for the later stages but beautiful).
Pray for me, I was once like you.
Be kind and loving to me,
That's how I would have treated you.
Remember I was once someone's parent or spouse, I had a life and
a dream for the future.
Speak to me, I can hear you even if I don't understand what you
are saying.
Speak to me of things in my past of which I can still relate.
Be considerate of me, my days are such a struggle.
Think of my feelings because I still have them and can feel pain.
Treat me with respect because I would have treated you that way.
Think of how I was before I got Alzheimer's; I was full of life,
I had a life, laughed and loved you.
Think of how I am now, my disease distorts my thinking, my feelings,
and my ability to respond, but I still love you even if I can't
tell you.
Think about my future because I used to.
Remember I was full of hope for the future just like you are now.
Think how it would be to have things locked in your mind and can't
let them out.
I need you to understand and not blame me but Alzheimer's
I still need the compassion and the touching and most of all I
still need you to love me.
Keep me in prayers because I am between life and death.
The love you give will be a blessing from God and both of us will
live forever.
How you live and what you do with today will always be remembered
in the heart of the Alzheimer's patient.
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