Jeanne's Journal 2003 July

December 14, 2003

I could never catch up with what has happened nor do I want to fill two pages with tragedies. From health to money Vern's and my life has been nothing to brag about. At least we can look forward to a better year as this one has not been the best except for my spreading the DASNI and Alzheimer's Awareness word and getting to see my family except Todd and I really am missing him.

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November 16, 2003

I went to a wonderful party last night. We had lots of fun and the lady whose birthday it was payed for it all and she had so many leis she could see over them. Many danced for her and sang. Ya gotta love hawaiian tradition. Got to enjoy the evening not only with 28 friends but a special nite with my son Keola and CC his gal.the birthday girl went home and signed another slip for open drinks and pupus. The first tab was $2800.oo oh it must be nice to be rich AND giving aloha Jeanne.

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November 12, 2003

This catchup time is really getting to me.Can't remember where the time goes but I know weekly I claen houses, go to beach, give lectures, attend parties, go to movies and watch tv along with eating too often, and receiving to much email and too many bills.

A couple of days ago I learned to ride an electric wheel chair , take it on the bus and take my x for a ride and taught him to fo the same. We were Laurel and Hardy. If you can imagine the blind leading the blind well just picture an AD patient with very slow reactions and a partly paralized man with 5 strokes under his belt then laugh cus that is whatwe did for 5 hours. His left paralized leg is so scrapped up from forgetting it was there and hittint rock walls. and the bus put the heavy metal hydrolic lift on my? back of my heel it now is so wrollen cut and bruised to the black stage ouch I am limping.

Nice to have a new member Gar in chat yesterday. Today is Jackuline of ELDER RAGE who had me on her radio show a few months ago.

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November 4, 2003

Aloha thought you would enjoy some shots of lectures with my dancers. Jeanne

To view larger versions of these pictures email me at jleehawaii@aol.com and ask me for the link to visit JLeeHawaii's Album: LJXPPKLPBG

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October 11, 2003

The tribute to Martin was so wonderful. I got to sit with family and felt so wonderful to be included.

I have now a publicist who is working almost too hard getting lectures for me. My name is getting know on this island at least. I am having calls for lectures instead of having to beg people to listen. I really feel I am doing a great service to these islands. before I felt it was just helping a few. The feeling make one want to do it daily but of course cannot. The lecture needs to be specialized to the different grooups but use much of the same thing.

Vern has been so good since I came home. I get out of cooking real often now. I get bored with the same ole thing and cannot start till he is home which most often is to late for me. I cannot try new things because I screw up the receipt. It is better for me not to try as I just get down on myself when I goof.

My friends are so special. They are all so behind me and come to many of the lectures. I have two young dancers(hula) that cause quite an attentive audience. They dance to Flying with angels which was written for somebody with AD, Forgot haw that story goes. Last wed was at a nursing home for the staff and others in the field and a few carepartners of the patients. This wed is for retired teachers of Oahu. The end of the month I do one at castle Hospital and it was really well advertized and then one for the Eagles on Halloween. There are 5 in the hands of the publisist to secure dates. It is so nice to have someone help with the work part of the lectures. The price is also great he is helping me for free. Talk about being blessed with friends. I am. Aloha Jeanne

Ending on a very sad not Mari my special DASNI and sister friend has had a crib death in the family, keep her in your prayers.

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October 4, 2003

I think I left off on the train to San Francisco. My girlfriend will join me in Portland for the longest part of the ride and another friend Allen will join us in SF. Poor Elain think she drove me to the bus or train in her sleep.

On the train I got a great couple of seats. I am a train traveler so I know what to pick and my friend will jooin me. On the way to portland I got all my messages I could not pick up in Canad aand ther were many from the book stores in canada Oh well the best laid plans. I love the sightseeing car and saved our sleeping chairs. I found the only seats the spin all the way around so I could see my kids along the tracks that came to wave to me and the ocean after it came into view. a girl pass me by that I hoped would sit by me. As gaurdian angels would do it she was at the talbe I was placed at for lunch. We hit is off. What a story she had to tell. She loved angels and all the ife that goes along with it. needless to say we tipped a couple of wines, I sold her a book and wrote a note to her daughter (a manic dep) who she was going to visit. She called me later to say how much it helped with their relationship that trip. We talked solid till Claire got on in Portland then the three of us chatted till she got off in eugene. Nice train ride and lots of great takling from our 2nd grade till now. We were hours late and so allen had gone out thinking we went to lunch or something. We played apts tag for a few hours and finally met and went to dinner. I called Elain my friend in Sf and she showed up the best tour available. She was wonderful and so warm obvious she was an Island person. We rode the trolley and bus and cab and Elains car. Took in all the sittes. We sailed around Alcatraz and under the golden state bridge where I cried just like I did at the statue of liberty and crater lake. The history of the bay was so freat. Then Elaine as a docent of the science and archeology and aquarium exhibits took me to a reception anothe wonderful site. But sad to say it was moving to another spot can't even imagine the time it will take to move all the stuff carefully. Claire went home and Allen and I went on to LA. Another good train ride allen first. Lots of Ocean views. Good meals and fun. We arrived at the trian station two hours late where Ipo and Kamaee and Keanu awaited us with hugs and smiles. We drove to ipos house 5 times around the island It was great to see them all.Kamae was so funny and seemed like Keanu had grown. Wonderful welcome but pooped. Next day went shoppoing for 65% off then another 155 WITH IPOS discount. Fun to get shhirts for $1.75 just what I needed anothe suitcase. Fun time Ipo had to work so allen and I had nice dinner.then Ipo took us to one of her favorite spots. Another 5 times around the island. Toooooo much driving for me. But it was fun. The next eventful thing was lost my bottom FRONT four teeth partial. It was o where. So still withouot it. Pretty expensive to replace so I have a new way of talking and smiling but forget it often oh well. Ipo packed us a great lluch and drinks for the trip home. Kamae gave us the chuckle tour to the airport this time with the baby but she slept the whole was she really grew also sorry I missed Paka. This was maybe 7 times around the island but they seem to think it is not bad. Thank God a cab may have been over 100 bucks or so. Nice to see Island family in a different atmosphere. Ipos daughter was so kind to us. She is reall cute. On the plane or before Allan upgraded us to first class. This is one of my favorite things to do in the world. The traatment was wonderful as usual and I cannot sleep a moment for fear I may miss sometning. Food great and had Blueberry tea. Home sweet home A trip to the ocean site and a ride home from my great pal mapuana. She had to go to work and I had to get hope to prepare to see my honey. I sure was happy to see him and he I . I was too tired to tell the story so he is getting it day by day for the next year hearing the same story many times I am sure. Till I get my film developed I will not know the extent of the camera dammage sure hope I get some shots for this memorable expensive trip.

Back to my daily routeen, Have not had time to get to journal nor tell the miseries of loosing orginanizational skills. Think this is the worst thing about AD. Maybe because it use to be my shinning star. Aloah Jeanne

I am a special invited guest for a reception and recognition for lifetime acheivement for Martin Denny tonight I fee very proud to be with all those important people. All the musical stars and fans will be ther in this sold out show. Darn I have to iron something take a shower and do my hair. All very big chores in my life. I love him like a father and admire him so much.

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September 23, 2003

Canada was so memorable. First the bad My book company did not get the books the canadian stores and two us stores. It was all really well planned and to put it mildly they just goofed majorly and will hear about it when I can get my wits. It is so bad it is and attorney thing. With all of that said I had a wonderful wonderful time in canada and with the help of alan got two of the three stores to do the signing anyhow. And I stood outside the other one .

Our trip across the ferry was so beautiful we even say bill gates island where Lynns goddaughter meets up with his godaughter anyhow they go to the same school. Acouple of hours of wind in the hair and beauty and a bit of reminessing with lynn. The buss drove off the ferry to Victoria. What a city. It was so impressive we checked into the hotel lynn had already arranged thank goodness. Then we took off wandering among the parlament bldgs and empress hotel and saw the seaplanes take off and the husstle of boats and people. We took a look at the sunset city tour and signed up. Lynn wore lots of smilesas this was nostalgic to her. Took her back to nurses training and living there. We say wonderful parts of the town all familure to Lynn pllus she added so much to the trip . The man giving the story was great. I got that special stuff from lynn about her time there, her homes. hang outs , friends Make out spots lol where the driver said did I know you lol. got back at dark to see all the bldgs lit up so georgous. We went to dinner at a Greek spot she had been back when they actually threw th plates after eating just like in greece but the waitress said don't do it now. At the desert menu lynn mentioned that the best bluebery tea was not there but at another spot. Of course we asked for a cab to go try it. 1/2 shot gran manier 1/2 sh amareto and fill the brandy snifter with regular tea. WOW It tasted like warm smashed blueberries. you must try it. Sat next to a fireplace and lynn remembered many times there. It was well worth the $10 cab fare each way. You only live once. Woke up had breakfast at a plush place with a 360 view. Got a call fro alan and went to talk to chapters book store and she said come in. Boy what a rush I was on a very different path than book signings. It must have been meant to be as it went ok and Lynn met a DR and learned lots about a different yoga than she had been doing. She may have tried it out already. Our luggage was in storage so I changed clothed in the closet. Soon I was off on the bus to Nanaimo. another two hours on my butt and then a friendly smile . I had never seen alan but knew him when I saw him. We gathered my stuff and we off on the beautiful highway with fall trees beginning. We talked till we arrived in Parksville. A wonderful little small town. There I met wonderful Val. These two really compliment each other. We talked oops I am getting tired can't remeber if alan cooked that night I know i had a great dinner and wonderful breakfast and one day I bought some stuff for snacks. Time went to fast but the three of us got is a lot of talking.I had a wonderful experience just hanging out and feelt f very relaxed with both of them. They both hav nice apartments in a beautiful complex that they manage and work hard. The book store a nanaimo was so nice and friendly it did not matter the sales were low the store bought some to keep as did the victoria store. Got to speak to a few people but sure felt the warmpth of a small town.allen val myself and another for those who understand had a marvelouos time. alan is a good cook. I had a rough time with laptop sent home already camera took two pictures and wound up the rooll two times and cell phone messed up in canada. who cared I had a great time.Said bye to Val and alan took me to the ferry. It was late and Lynn's wonderful parents were waiting for me with lynn who came from victoria. If I let it go the anger I have for this publisher would ruin my trip. Glad I could put it away for a few more weeks.They cost me a fortune.Long story I will not go into. I had fresh tomato's and peaches. So good. I must have eaten 3 bushels of garden tomatos in 6 weeks.Sold books on ferry , bus and train. I just cannot get off my soapbox. Also got two offers to talk on my next trip and a possible convention in orange county LA.Lynn and her family took me to Elaines where she had two great friends over and I met her very nice son. What a hospitable DASNITE. She had a friend who cooked dinner and we wined and chatted. Her trip sounds so great. I was happy to see it coverwed in ageless design.I slept is a bed meant for a queen and awole so early I felt bad for her. She made coffed and toast and made a few snack items fot the train. It was dark and she sook me to the train. It was a whirldwind time but I felt I had mad a great friend or so. Thanks to all of the Canadians who helped to make my trip so fun and eventful. And I am off on the train for another 23 but turned out to be 26 hour trip. More fun and people

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September 22, 2003

I thhink the date was Sept 3rd

In the morning we had breakfast with the two main persons at Greater Oregon and Idaho Chapter of the Alzheimer's. They have been so excited for this event and so have Carolyn and I. We discussed what the lecture was about and I got my way but did not know it till the lecture started. he had a different agenda and I planned to just wing it. The evening was planned for months to have an RN speak on her works with Alzheimer's mostly early stages. I was the secondary speaker. I felt so proud after my lecture she gave the floor to me. There were so many questiions from the 35+ peoole who paid $10 for the evening. I sold books to almost every one and one person bought 12. I met two persons again from my gradeschool. This was one of the most sucessful lecture on the trip. All the AD Groups on the trip were so thankful and kind to me. (now that I am home my book is not even at my groups library) Others ordered 10-15 books to sell for me.

Sept 4

I had a wonderful trip from Portland to Seattle and Edmonds with my daughter Traci. It could not have been more wonderful. She is so great and so helplful and fills in whatever I am mixed up about. I really wish our relationship was not mostly on the phone. Each of my kida and grandkids are so into helping me and are so very understanding. I really missed seeing my second son and grandson ( but he has been out of ouor lives for 9 years. Hurts to type it. I hope Todd will come to Hawaii this year. The plans look like my third son and family may make it over within two years and my grandaughter may come in January for the probown as she is a cheerleader. Back to Seattle we stopped at Pikes Market more betta than the space needle. We bought flowere, fruits and junkIt is ?2-3 blocks long with 4 floors. Lucky my daughter and I have two of the same favorite things 1 laughing and the other eating. we did lots of both.

We finally made it to her best friends and my hanai daughter from Hawaii and they sat up all nioght gabbing. They had not seen each other for 7-10 years. She made up PUPUS and we sipped on wine. Both of her children cam home . Guess traci and I expected to still see them as kids now 21 and 17.

Some where in this trip I tried to call my x to see how he was doing. he could not speak at all. I called Keola to find out he was in the hosp again. He gets pneunomia often. Now that I am home I will try to get him to talk again. He is pretty bad and very depressed.

sept 5

traci put me on the train to vancouver bc/ I tried to call keola and lost him in a tunnel the next time I said Keola guess where I am the train whistle blew at just that time.My phone was all screwed up in CA. Could not get any of my messages because they had chanfged the #s to pick up voice mail.The trip along the San Juans Islands was so Beautiful. Hit the last stop int he Us Bellingham Wa and found out I needed passport or birth certificate. Had all sun 8/5to9/5 amazing. My angles prepare my trip so well. And oh the help on the way I cannot say enough. began to worry and remember exactly where I left my passport at home. Vern was at work when I left.All went well imigration sok. I pictured myself on the boarder and Lynn abd Elaine at the train depot. It would be ashame to fly over all this beauty. I am in Canada and it looks the same lol

lSept 6?

I think Had such a great smile waiting for me at the statiion in Vancouver. You can never know what a feeling it was to see Lynn. A great sigh of relief and a warm feeling like seeing a long lost sister even tho we were together a year ago. I had way to much stuff as a new poster was made in sacramento that was worth carring with me. Thanks to Linda. We made it outside and I met Elaine. It was like a new family member. And this one is climbing Kilamangaro What a busy girl. She Left lynn and I to catch the bus which took us ON the ferry to Vancouver Island.

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August 30, 2003

Today is Tim's birthday. My oldest son is 42. Wow Hope to see him today after work. I have not been with him for his birthday for quite a few years. One day I am with 6 kids the next 9 and the next two with 3 anties and an uncle for lunch a dinner out with three sisters tomorrow is breakfast with brothers and a book signing. Thurs at my sons with four more kids visiting 2 girlfriends. Friday guess I cannot remember but another lecture lunch with 3 girlfriends and two uncle priests. Then comes the beach and lecture and book signing in Grants Pass and off to the beach with three kids and two of mine. I think Sept 1 is open, 3rd breakfast with the ad assoc people and 4th big lecture and off to Seattle. Wooooosh . Miss chat so much cuz I forget new times or am to busy to be at a computer. The computer is my relaxation now. Today is Sunday and have been to another party and get together.

That one covered the 24 and now to backtrack and I am the one who cannot count backwords by 7's. My sister drove me back on I5 hate that hi-way to Albany where I had a great lectureat Menonite Village. A beautiful large village with persons in their own homes to duplexes 50 and over persons and then an assisted living to an early stage dememtia to midle to late total care. It should be a required setting for Dementia patients. They all (the employees) go throught the BEST Friends approach to Alzheimers school and training before they are hired. What a loving spot they treat the persons just like family. It really gave me chicken skin to see how wonderfull run it is. I went very well. About an hour of q&a

On the very next day my son and his family picked me up to head for the far away beach. Can't remember taking 4 hours to get to the ocean I have traveled by car over 1600 miles in a car at the least with another 160 to come. Do you know that is about 20 times around the island. The beach was great We drove through the redwood forest with trees big enough to fit our van indide. My Grants Pass venture was wonderful. I went to the vitality center where there was not even an open door. Later to find out the lady in charge had the wrong time but it made the papers so I was with about 45 people and took them all to my book signing at this little bookstore. I talked 1 ½ hours with 1 man whose mother had ad and he is building an ad unit next to his retirement and assisted living spot. He offered the kids and I his model home to stay in with pool and next door restaurant for free Then he took us all out to dinner to meet his wife and I stayed for two hours talking to them. He called in a couple of friends to meet me and wants to use me for a consultand in the building for good and bad s. Now this is a joke. Hen speaking on my soapbox I sound way more capable than I am. People are taking to the early stage- onset of the dementias with open mouths and many are going for the apo test for familial.. we stayed on the beach in a cottage condo completely stocked with a cute loft. Barbeque and hot tub. Heaven I do believe.

Today is the 29 breakfast with brother and his wife and got a $300 donation for the trip. My tips for printing have been paying for my trip. But do not get much at book signings. Lunch with 4 8th grade classmates I may sleep for dinner. My arthritis is much worse here than at home spine and pelvic so I move like I am broke. Well I am actually lol I still have Monday the 1st open but the kids are wanting one more get together. This will be the last time for the full family minus Keola in Hawaii and Todd in Utah. If you all could just put in one extra hour of sleep for me I will do better on the last half of my journey. This half will be the hardest. Thank God for my Dasni friends in Canada.. Aloha.

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August 18, 2003

I am wondering if I lost the part from Santa Barbara, Fresno, Sacramento, and Klamath Falls. This part covers the first portion of the trip. I left home with one extra suitcase as my publisher screwed up the places to send the books. They sent all 200 to me and not to the places it took me three weeks to decided how many on what date and the person and address to send them to. I had to pay an extra $200 dollars to get some sent and the initial sending which I pay when it comes to my house was another $180. All went good on the plane except they have made the seats differently on the new ones and they are really uncomfortable and the air condition is central so you freeze and have a strong draft.

The trip from Air to train was also an adventure. Got my luggage and tried to go to the yellow van as planned and it was not leaving for 20 min which would have made it to close for this person who likes to arrive very early to regroup. I was at the Honolulu airport 4.5 hours early. That's my active Alzheimer's but I have always been very punctual. another driver said he was cheaper so I got in his only to be let off 4 blocks and still in the airport because he had a call to do it Well after the fact it all turned out OK but not without a bit of stress.

Now I was in Santa Barbara (loved this town). Caught a cab and 3 blocks away I discovered I forgot to pick up my checked luggage. The cab driver took my tags as he could see I was real close to tears. I had scheduled this to close to my lecture. The bags had to come with me but were coming on the next train 45 min down the road or tracks. I had to shower and change clothes and they were in the bags along with a part of my lecture stuff and books. He said he would take me to the hotel and go back for the bags. My check in was fouled up and not rooms were ready does this sound to eventful to be true. It felt that way too. $38 later I had bags a shower and dressed went to call a cab and called the lady handling my time there. She said she would come get me. Got there with 5 min to spare which to me feels like two hours late. the greeting was so great. I met everyone and threw away my notes. These people with early stage dementia and the workers there were tremendous. We just talked like our chat groups. I hope we have some of new members from them as they surely want to keep up on things. After a couple of hours we took a picture of the group. The lady I had worked with took me on a fast tour of the homes and missions. After I go home I thought I would walk just on one street and not cross. I rode a bus for 3 blocks cuz I watched it go straight up and down the same street. Later in my walk I learned the ocean and pier were only 2.5 miles down the same street. So I continued thinking I would catch the bus to go back home. Called my son from the pier because I thought that was where we spent a week one year. It was and I had dinner on the pier. Of course I talked to a couple about my journey. I don't let many escape my soapbox lecture. After dinner I went for the bus that stopped running at 6 so began the walk back to the hotel. I had turned al my suitcases upside-down when the rush was on and now was time to reorganize which I found I was much to tired to do. So called for an am wake up call. The director and author of three books wanted to chat and offered to take me to the train at 5 . What a man his total life is devoted to people like us. I know have heard his name and our book mentions our name. He also knew Morris. The last of his three books should be a bible for any one trying to understand people with dementia's. He will be interviewing me when I get home. A Dignified Life The best friends approach to Alzheimer's care is the title. Written by David Troxel M.P.H. and Virginia Bell M. S. W. Please add it to your readings if only you go the the library check the conclusions after the chapters. Another great book I got was Alzheimer's Early Stages by Daniel Kuhn MSS very good as far as I have gotten. Well, better get out before you get to bored. I have decided I cannot do anything alone where travel exists Just to have someone there in body is very helpful.

I arrived in Fresno from the bus in SB no from the train after the bus. My antie and cousin awaited me with a beautiful bouquet of flowers and warm smiles and my cousin took over after very welcome hugs. I suddenly felt family and did I ever need it. We shopped ate and I saw another few cousins. One of them is a bit mentally challenged and she woks for an eldercare with Alzheimer's she is doing so well the patients await her arrival. She wants ti continue and I think has found he nitch in life. I will be sending her little tidbits of info from time to time. My auntie is the best. Between she and another lady had everything set up. The lecture was totally amazing. Candy showed up and helped me a lot with the Q&A The talk was about 35 to 40 min and we were there for 3 hours. Many people who worked with Dementia's came and were full of them. Sorry I had to miss Pat who had thrown her hip out of joint. At the book signing we discovered the book did not sell itself. The word Alzheimer's to small so we made a written sign and then a few people stopped by and it went well. Took the train from Fresno to Sacramento where my sister was waiting. She was the one who went to Barcelona with me. She is the best to travel with. Since arriving I have seen 9 grandchildren and three children and 5 brothers and sisters. We went and bought school supplies for 6 kids. I do not get to buy that stuff either because shipping adds so much. This was fun. I am staying at my sisters which is pretty hard for the familles to understand but change are really tough. Packing and unpacking is so tiring and I cannot play the games most of them want to play and some are to young to understand. The pool is here and they can all come over. We are having great times. Wish I could do ½ year here and ½ in Hawaii. Well, maybe 3 MO here and the rest in Hawaii. Each day has plans even when I say it is a day for nothing. Someone hears of my arrival and comes over. Having lunch with 4 grade school pals.

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August 1, 2003

This is some of what has been taking place in my life lately. I am so sorry for having a portiion of my journal that may confuse you but I want to paint a picture for you of just how I am doing. When I have to put too much on my plate something suffers. Aloha and bear with me as it will get better when the trip tour beging on aug 5 If I were to put in a daily journal it would say the same thing each day of this planning. The trip to Waterloo has been canceled. I am a bit relieved

. Subj: Aloha John Advent
Date: 8/1/2003 10:46:07 AM Pacific Standard Time
From: jleehawaii
To: info@dieselbookstore.com
Right-click picture(s) to display picture options

Subj: Re: Jeanne L. Lee's Itinerary for August 6, 2003 through September 16, 2003Â
Date: 7/29/2003 4:20:28 PM Pacific Standard Time
From: kirkdugg@comcast.net
To:jleehawaii@aol.com
Sent from the Internet (Details)

---- Original Message -----
From: Mike Kirk-Duggan
To: jleehawaii@aol.com
Subject: Re: Jeanne L. Lee's Itinerary for August 6, 2003 through September 16, 2003

If possible may I suggest a signing in Berkeley at "Diesel: A Bookstore";
www.dieselbookstore.com
They have a very high reputation among the cognosti & literati of the East Bay community

The contact person is "John Advent".East Bay is probably the most progressive community in the country for helping those with Alzheimer's, as well as the Caregivers.

Regards, Mike
[bcc to your email list]

----- Original Message -----
From: jleehawaii@aol.com
Sent: Tuesday, July 29, 2003 9:41 AM
Subject: Fwd: Jeanne L. Lee's Itinerary for August 6, 2003
through September 16, 2003

I will also be going many directions from the portland area to do book signings in smaller cities still in the making aloha

Subj: what I called about
Date: 7/29/2003 9:12:13 AM Pacific Standard Time
From: jleehawaii
To: jzervis@kaady.com

Dear News Director:

I am writing to present to you probably one of the most intriguing human interest stories to come across your desk in a very long time.

We are aware to some degree or another of individuals who have Alzheimer's Disease, a horrible disease which robs individuals of their memory, bits and pieces at a time. However, we really know very little about the disease unless it directly reaches out and touches our families directly.

Between August 20and September 3, 2003, Jeanne L. Lee, author of "Just Love Me“ My Life Turned Upside-down by Alzheimer's" will be in the Portland area. She will appear at Barnes and Noble in Vancouver at SRL -500 across from Vancouver Mall on the 20th of August at 7pm for a talk and book signing. She will also appear at the Alzheimer Association at 1311 NW 21st in Portland at 7-9pm to do a lecture to promote her efforts for her journey of advocacy for the early stage dementia and speak about her life before and with AD. Books will be available. Reservations required 1-800-773-0402

What makes this such a unique human interest story, Ms. Lee has been diagnosed with Alzheimer's since 1996. You will be able to learn first-hand the struggles a person with dementia goes through to perform the simplest of tasks. Additionally, you will learn of Jeanne's plight to bring early onset Alzheimer's disease to the forefront. She is advocating for this so people who have been diagnosed will have an avenue to reach out to for support which they need just as much, if not more, than their caregivers require.

Ms. Lee will stop at 16 plus cities via train/ bus/ car through the western United States and Canada from August 5 to September 17, 2003. Ms. Lee will be touring with her "Alzheimer's Awareness" the group she has founded and working towards a non-profit status so she will be able to do more for the cause. Jeanne is funding this trip with her disability of $713 per month which just does not allow for much travel expenses. I must stress this is not a fund-raising effort. It is to raise awareness and support for those diagnosed with Alzheimer's.

It is my hope you will take time to consider this story. The following is the link where you may learn more about Ms. Lee's book:

https://www.angelfire.com/hi4/jleehawaii/book.html

If you wish to contact Ms. Lee directly, you may do so at Jleehawaii@AOL.COM. As Ms. Lee resides in Hawaii, please feel free to contact me directly. My information is as follows:

Mary Flett
7619S.W.34th av
Portland, OR 97219

Book Review

Just Love Me, My Live Turned Upside-down by Alzheimer's
by Jeanne L. Lee

I think this book is a wake up to those of us who share in the care with someone with Alzheimer's. Jeanne tells it like it really is in words we can all understand. Jeanne has given me permission to use a few excerpts so that we can all begin to realize just what it feels like to those who have this horrible disease. Through reading this book, you will learn why you as a carepartner or caregiver need to have more patience and remember that it is the disease and not the person you love. Believe me, the person who has Alzheimer's or another dementia sure didn't ask for it. It is up to us, the TAB's (temporarily able brained) to learn to move into their world as best we can as they cannot, try as they may, always be able to cope in our world.

I offer my sincere thanks to Jeanne for sharing her life with us in order to help all of us have more understanding.

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Did you ever take a full minute to decide which way a key goes in the hole? Maybe once, but five times a day? Or look in a phone book and not know which letter follows which letter? Try to add three numbers together and get five different answers? Walk into someone's house that you have been in many times and take ten minutes to get oriented as to whose house you are in, and what you are doing there? Watch a TV movie and forget what it's about in the middle? Read for hours and hours, having enjoyed it while you were reading it, but then it's all gone? Ride the bus and forget where you're going, and have to hunt through your weekly agenda to see where you're going and why? That is, if you remember you have somewhere to check. Lose or misplace something, not just occasionally, but four or five times in an hour? I can misplace my pen ten times in an hour. I can misplace my glasses, even though I have a pair in my purse, another pair in the bedroom and another "wandering" pair. All of a sudden they're all wandering, and then they're all in my purse. I clean up the same pile of stuff four or five times before it gets where it's going, and I used to be the best organizer in the world. Now it takes me two hours to prepare before I go anywhere.

Page 32
Something that I also find disturbing, especially with groups, is that I have to frequently interrupt, because, if I don't, by the time they're finished with their story I've forgotten what I wanted to add. I have to get people to understand that they can remember their story, and after I've said what I need to say, before I forget it, I'll shut up and let them finish. So, I either interrupt or lose what I was going to say, and what I have to say may be important to the conversation. This is hard for someone like me who was taught not to interrupt when someone else is talking, but it's the only way now. It's an awful feeling, but if people were more aware that this is the case for someone with Alzheimer's that would help. For those who want to say something and can't find the right words, it makes it seem like you have no intelligence. Combine that with feeling rude for having to interrupt, well, sometimes you just feel it's easier to let the thought go. That is why so many withdraw and don't talk. But I don't think people should have to do that.

A Note from Jeanne Lee
Jamie My purpose in writing the book was to help people. You have my permission to use what you see fit. Anything short of cover to cover is open to you. I admire you for the ribbon and if I can help please let me do so. I am on a journey for earlystage awareness and moving right along. I hope to do a greyhound bus tour from LA to Portland stopping at towns to lecture and do book signings. If that turns out OK and the funds last I will do Portland to Vancouver BC. I do not have the support of oour archaic AD association so this is a one woman challenge to open the eyes of all the islands. I even borrowed $6000 from a friend to represent the United States as a person with dementia at the International Alzheimer's Convention in Barcelona. I do not want to toot my own horn but just to show you that I really am an advocate. Aloha Jeanne
Thank you so much for The Ribbon.
Jeanne L. Lee
Author: "JUST LOVE ME"
My Life Turned Upside-down by Alzheimer's
jleehawaii@aol.com

A Short BIO for Jeanne L. Lee

Came to Hawaii 35 years ago with 4 children and 32 pieces of hawaiian luggage (boxes and coolers became part of the people and the land within a short time. Married a local. This is home and where my children were raised. Now Mother of 5 grandmother of 13.

Pillot,teacher, principal, concessionaire, bartender, graphic artist.hairdresser, critique tor time and manangement for businesses. Owned bars, restaurants, golf course, printing brokerage and homes mostly in Hawaii.

Board Member of DASNI(Dementia Advocasy And Service Newwork International The largest International largest Internet group for persons with dementia in the world. ( early to middle stage)

Invited to represent the United States in the 2002 International Alzheimer's Convention in Barcelona Spain . Spoke, held workshop, designed and manned the DASNI Booth. Continue to give lectures for awarness of the dementias and the importance of early diagnosis.

Remain part of a cell research for Genetics that began with my mother and self being followed at Indianna University Research My mother passed away last year after a 17 year struggle with AD. Really the last 5 years were the worst. Some of her struggle was before diagnosis.

WE MUST BECOME AWARE OF THE EARLY STAGES OF ALZHEIMER'S AND OTHER DEMENTIA'S

The later stages of dementia become less harsh when a person is diagnosed in the early stages and medications are more effective when given early. Coping skills are developed by the persons with the diseases in these early stages and not when it is impossible to do for oneself. Self-esteem can be held for years to follow. If persons feeling the early stage signs could get the help with a diagnosis they could continue to work in either another field using their lesser abilities or in their own field with lesser duties. This alone would keep a persons respect for oneself. It is enough of a trama to know what one has to look forward to with this diagnosis without having to give up ones job, a car, friends and self-esteem all at one time. It has been proven by thousands of early stage PWIDS (persons with dementia's) to be capable and intelligent beings just moving a little slower. There are Scientists, Ph.D, Pharmactists, Authors, Movie Stars, Counselors,Very Technical persons, CEO's, Persons working in the Home and all walks of life effected by these diseases. Most of these in the early stages have lost jobs but still retain much of the knowledge they have studied, practiced and reached a high level of success. For these reasons I am sending you information on my book for you to consider using it for a screen or stage play. There have been a few written about the later very devastating parts of dementia. These movies and plays were important to show awareness of the growing numbers of diagnosed. Now that the early stage diagnosis is becoming an overwelming part of the disease there needs to be a new awareness of the disease. An awareness that will set back the need for carepartners by years. An awareness that the diagnosis should not be a death sentence but a new lease on life. It can be a rewarding time and a slight turn in ones journey, but not a devastating turn. There is so much help needed from the knowledge of persons actually living the disease. Persons can choose a journey of compassion and teaching or ignore the early symptomsÂ and fall into the later stages where the hardest life for them and their famalies exists. They and their famalies can immediatly find the help and medications that may hold these diseases from that fast downhill and PWIDS may still be around for THE CURE.

To Whom It may Concern:

I have included articles that may intrest you and help you to understand my intentions.
The myth that AD is an elderly disease needs much attention. My group DASNI (denentia advocasy and service network international) is the foremost runner in this service.

1. We are very much included in conferences by states, national and international AD Associations and asked to speak or exibit a booth .We have had one of our members give the pleanary speech at New Zealand and Barcelona where I also spoke and manned the booth
2. We have grown as an internet group of 3 in 2000 to 2003 having 200+ members world wide
3. Six of our members have books published and I am one of these
4. One of our biggest Drawbacks are most Doctors who will not accept knowledge from lay persons even though we are living what they are trying to understand 5. We have had a wonderful welcome from the rest of the medical field. The information needs to start with the professional. Too often I get the comment You do not look like you have AD. I had an article published on this information and there will be a handout at my lecture
There is no reason to believe that early stage dementia persons lucky enough to have the best medications early cannot contribute to society. We may be a little slow, we may get confused easier than most and we move slower but that does not mean we are by any means in need of carepartners yet. Even when we are in need of carepartners we can continue to help others.
6. So many persons are in shock that we can still give lectures. I give about 20 per year and growing, and the group overall give hundreds Internationally.

I will be in San Francisco the 10 -13 of September.
From jleehawaii
Aloha Brenda, Kevin, Linda and Jamie
If I have forgotten anyone please forgive me I have gone back into the text of this wonderful letter and story 4 times to retrieve these names. I am Jeanne Lee and I have Alzheimer's. You all should be so very proud and I plan to visit sites and buy books. It gives me chicken skin to see people with such dedication to help others have their rewards. I hope to see some of you when I come to Sacramento on my book tour. August 10th and possibly the 11 am if something gets scheduled for then. Again congratulations for jobs well done. Keep those dreams coming true for it is people like you that will make this world a better more equal place for everyone. Aloha Jeanne

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From photoljt@sbcglobal.net
Well gang, you know me, I can never sit still for long. I am off to a new adventure on Sunday, August 10, 2003. I will be meeting Jeanne L. Lee, author of Just Love Me - My Life Turned Upside Down by Alzheimer's. Ms. Lee will be doing a presentation and book signing at Tower Books in Sacramento. I just got the book yesterday. I have been able to read a few pages and I am very intrigued. Jeanne was diagnosed in 1991 with EOAD. There have been excerpts from her book included in TheRibbon Newsletter. I am excited to meet Jeanne as everything I have heard - she is truly amazing. I can't wait to update you in the next edition!

Big hugs!
Love Always,
Linda
www.TheRibbon.com\GatherPlace

Aloha Jeanne I will calm down once on the train. between changes, mistakes and overwelmness things have reached the high point of confusion.

(Format time of this entry 11/2 hours...'Resa)

July 21, 2003

7/1 guess I have to go back to a larger dose of trazadone. I slept well all night and went to bed early as usual think it helps me to let go of today and tomorrow. Guess i have fallen into the computer world I have to check email before leaving the house. It seems to hold my life these days The electricity went off and it is amazig what one cannot do without it. todays is martins day. I miss june so muh. What a difference working for them and working for the daughter.

7/1 cna you imagine this month has two 7/1 I guess I am trying to slow the time before I go. I brough some sashimi for martin and he was so happy. I got Ray and sandy to come over as he had just about had it. He was so down from all his demands of his daughter. he is not him anymonre he is what she tells him to be. I needed to pull him out od the mmood. They always include me and we had a great time. Got a letter back from a book store. This is soooo hard. Wonder if some of these people I goof on think I may not be capable of lecturing. Last night in my dreams I was riding the bus with vern and a friend In my dream) we were not in town.they got off and left me there. I had to go to the end and pay again to get back till they got back on. My next dream I was talking to some girls who talked me into selling their cosmetics i went to the first high rise it was filled with older folks all dressed in fancy clothes and with lots of makeup on. I sold out the makeup and made the girls big bucks.I was thrilled when the bought me a fast food lunck.Oh boy think travel is on my mind.

6/2 I am copying this as I wrote it. must have beena real mixed up week.on the computer to fix some of yesterday problems but just made new ones also. (this make no sense at all) Mary called to see if I was comming over today. (my only marys are in Portland and oaklomah. (strange to reread this mess.)

7/2 Went to the doctor and got a bus pass saw mary. ( who knows) had a good visit wit doc as usual. 7/3 saw Johanna and elizabeth on thursday so friday could be cleared. cooked and cut veggies seemed like forever. made some delicious chicken curry for the 4th picnic. 7/4 got up did email Vern dropped me at beach by Illikai. We had a great time but I had to keep disappearing to get away from people, radios talking and hollering.Went to the pool cuz we stayed overnight there. spent sat at the pool till it filled with kids. Could not find a quiet spot to sit at our picnic and to top it off the drunk man spilled my 5 lbs of curry on the ground. ad to walk away before I said what I was thinking. The fireworks were beautiful. The bed was the most comefortable I had ever slept upon. our two rooms of gals got together for breakfast in the room. Talk about pampersd. I did it to myself. and loved every moment. we sat by the pool till they left and I wanted to get the most for the dollar so I stayed alone and watched the Hawaiin show for hours. Talked to peole and called vern for pick up. As usual I did something wrong and felt his anger to end a wonderful weekend. he is soooooo set isn his ways. I sure hate not being able to get myself to and from places. One of the worst things about AD.

6/6 its daddys birthday and i got to smell fresh cut grass which is when he speaks to me. thought I lost my cord for my cell phone . tried to order another as I dumped my purse and any where else it could have been.

6/7I am so upset with my publisher. They goofed on sending books which will cost me big bucks to get them to mainland so I do not have to take them off and on train and bus. Oh and my cord wwas in my pures still . thank god I did not buy a new one.They also are behind in the printing and one book store cancleed because they coould not get enough books to have the signing. I am VERY sure that will not happen again. I really let them have it and also told them my attorney was checking into the problem by looking over my contract. It was taken care of real fast. Boy can I be a bithc. This trip is my life now and noone will mess it up without knowing about it. Had my indianna report sent to vern cuz it was getting to confusing. I ran into a letter from them to vern that was 1 month old and not opened. I opened it and filled it out and sent it. Carepartner ??? it is pretty scarey but he does try I know.

6/8 it is really 7/8. got up at 5:45 to make calls only lets try today to see how a best planned day turnes into a mess. did not get one made before 11. My life is full of rtangents each little thing entails 5 side trips at least. no wonder I do not get to the plan of the day. this is a mess ad I just noticed all the way till today 7/21 i have 6/?aloha hope I can keep this up during the trip.

(Format time of this entry 1/2 hour...'Resa)

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TABLE of CONTENTS

Jeanne's Journal 2003 July - Nov

Just Love Me: My Life Turned Upside-Down by Alzheimer’s