Presentation given by Jeanne Lee to University of Hawaii Kaiser Medical Professionals, Queens Medical Center for Professionals, Medical Students, Counselors and invited Lay Persons - Pohainani Retirement Center, Grace Lutheran Church, Eagles Ladies Club of Hawaii

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.