To My Journal (June thru December 2000)
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TABLE of CONTENTSDecember 30. 2000
I have been procrastinating, avoiding my journal, to see if perhaps I couldn't remember things on my own without the reminders of the day that I
write...........SIGH, 'tis all gone! Christmas is come and gone, vague recollections of the day. I did write a brief message that seems to be the only reminder of the day that I have ... We did our Christmas here Saturday with our daughter and her family (her
mother in law too) son and his wife and two little ones, my folks and a single cousin .. so we had a packed house. Way too much commotion, although I did enjoy the earlier part of the day, towards the end I felt kinda' like I was in a daze.. too much noise.. happy sounds, nonetheless I really didn't get to see all that I wanted, my favorite part of Christmas is
watching the delight on the face of the receiver, knowing that I've found just the right gift. I am sure more than anyone I know that you will understand what I mean. Really was very bittersweet when my Mom & Al left, she gave me a big hug and said "It really was nice running into you here. And how is your
family doing?" And yet for the four hours or so that they were here, she did pretty well. But, now that I look back on it for the most part after initial hugs & stuff she really wasn't part of any conversation, just kept refilling her plate with goodies. When they first arrived we went over some old pictures together, in describing them to me, it was as though I was not
part of them..."Oh, and this one. I think it was taken when Frank (my dad) and I lived in Salem. And see here is Les, Alan and Janice" Many of the pictures she didn't know -- and should have, her brothers children etc. I asked her about her ceramics (which she does twice a week), and she said that they just don't bother with anything anymore. Poor dear, so sad to be
so lost in one's own mind. And yet to the outside world she doesn't 'look' like she has Alzheimer's, nor does she act it. Is able to appear quite social, just don't ask her ANY question to which you expect a proper reply. For reply she will, but it will have nothing to do with the question..... SIGH ... this
is hard looking at my future ... looking at me.
Jeff, Windy & the kids spent the night. We all went out to breakfast at the airport, Windy and I went with the kids and did a bit more shopping and the
guys took off on the Harley. They didn't get home till about 7:30 -- drunk!!!Man if I thought it would do any good I'd be mad as hell. But, you know I've finally come to realize the only one who is upset is me, and it only hurts me. They got back safe (my thanks to God), they had a wonderful time together (and they really need to start getting along past that 'father/son' thing to become friends), and it is they who will suffer the hangover's!
So, today is Christmas Day -- it will seem strange, no children, no presents under the tree, no family to share the day with.............they all have homes of their own, where Santa surely left lots of goodies last night for the kids, and their own traditions to enjoy. Well, guess I have found the downside of being a Grandparent
The Twelve Gifts I Wish for You ... in this special season and all the year through
Happiness. Deep down within.
Serenity. With each sunrise.
Success. In each facet of your life.
Family. Beside you.
Close and caring friends.
Health. Inside you.
Love. That never ends.
Special memories. Of all the yesterdays.
A bright today. With much to be thankful for.
A path. That leads to beautiful tomorrow's.
Dreams. That do their best to come true.
And appreciation. Of all the
wonderful things about you.
-Collin McCarty
The poem was sent to me by a friend in Switzerland who has dementia also, I felt it was so lovely I just had to share it. But the three weeks since my last journal entry are empty. It scares me. Until there is a momentous event like the celebration of Jesus' birth, I guess there are really no reasons to go back and try and pinpoint my memories, thus I was never really so terribly aware of their quick departure. Yes, I guess I wanted to believe that perhaps the doctor might just be right -- it is depression and not AlzD. Thought I could help prove it to myself. I have found myself avoiding even my friends in the chat room. I am so very eager to connect, to understand, to try and fit in.... In chat I find a freedom among my peers to speak out, to be honest but I fear I become too talkative, I get paranoid when people quickly leave the room after I enter, when I ask a direct question and it is ignored and so I have avoided going there. Like the turtle hiding in its shell, I look for a safe haven, yet make sure my protective armor is in place. We went to the Orange County Alz.Ass. yesterday to pick up my windbreaker from the Memory Walk, and spent some time with the director Linda Scheck. She is very gracious, always affording me time even in her busy schedule. We talked about my being part of the board and I also told her that I wanted to approach National to sponsor a chat for the patients. She was very enthusiastic, and said that there was to be someone here from National next week and that she would discuss it with them as she had grant money that could be split. She is a s anxious as Wade and I for the 'Family Meeting' at UCI to go over my test results. She also has a contact with the Pfhizer drug company and is hoping to put those of us in the DASN group on Aricept in contact with them as I told her I was certainly not 'the Lone Ranger' continuing to do well.
I guess I just feel isolated when I don't connect with my friends ... my own fault. But pretending that there is no dementia problem, just doesn't make it so. Coping isn't any easier, actually more frustrating trying to behave and do as I once did .. it is obvious to me I need structure, discipline in my daily activities or I am very sporadic in my endeavors. I need to keep in mind that together we can make a difference, it is just hard to balance on this ball these days.
December 10. 2000
I will have to bring my journal up to speed! (Now, that's an understatement)On the 9th of last month I caught one nasty virus that completely shut my computer down -- although Wade continues to try and salvage it, it does look like it will have to be reformatted ... VERY frustrating! All my saved 'Favorites' are gone, and that is where I had all my addresses to friends sites, and informational Alz. sites. Many of the boards I can no longer find the link to --- so if you've found me 'missing in action', please e-mail me with your address! Guess I've learned my lesson (the hard way naturally) and showed to no longer open attachments from anyone.
We left for North Carolina on the 12th in the RV. It was an 'iffy' trip to spend Thanksgiving with his family. We had a late start on Sunday and didn't get very far, just to the California/Arizona border. The pups were really hyper the first day, but soon settled down and were very good travelers -- only one 'accident' in the rig. The second day was magnificent as we went though one of my favorite parts of our nation, the Gallup New Mexico are the rock formations and mesas are really breathtaking -- especially with the foot or so of snow that on the red cliffs. We stopped just outside of Albuquerque -- 19 degrees! BRrrrrrr.
Wednesday morning I really did one of my dumb moves. I had been mixing a hot chocolate mix in with our coffee in the mornings so decided to just scoop it into the coffee filter on top of the coffee grounds - I thought it would just melt through -- NOT - clog up the works is what it did. We have a spaces! aver wall unit coffee maker and it started leaking all over. First I pulled the pot down, then the filter unit -- which was overflowing and ended up spilling it on my arm --YOUCH! Thank heavens I had on long sleeves which took most of the spill. So I ended up with some rather nasty blistered burns on my forearm. - Thank the heavens for Neosporin. Rained all the way through the state of Tennessee. We arrived in Mt. Airy in the late afternoon, and parked the RV down the road from his Mom's and walked to her house with the pups. We really shocked the heck out of her, when she asked what in the world we were doing there, we just told her that we'd been out walking the dogs and decided to drop by. Visited with my SIL and her family on Sunday. A gentle snow was falling while we were down with her in the chicken house -- how absolutely exquisite -- just light snow, like a gentle rain only white -- not enough to really stick, just enough! to make it look like a fairyland.
I really feel sorry for my SIL she is in charge of the family's chicken house, and spends the day alone there. The house itself covers over a quarter of an acre. They raise fertile eggs for Foster Farms I believe. So part of her daily chores is gathering and grading almost 7,000 eggs a day, walking the house to pick up the eggs from the floor and picking up any dead chickens. Not a hard job, just a lonely one with long hours, and she still keeps the house and meals for her family. -She's just a little bit of a thing at under five foot -- but a feisty spirited woman! We really had a nice visit, taking time to see most of the Uncles, Aunts and cousins. And of course we had to go to 'Snappy Lunch' and have their famous pork-chop sandwich. (Wade's home town, Mt. Airy, is Andy Griffith's home town and the one he based his Andy Griffith series on - it is still a very small town, and has that charm about it)
We headed out on Friday after Thanksgiving and stopped in Statesville to visit one of my cyber-friends from the Alzheimer's Board, Vickie! How very exciting to meet yet another friend I've made on the web. It was just like we were all old friends just catching up on old times though -- she and her husband drove up from their home about 8 miles away and met up with us in the Walmart parking lot. What a nice visit, a best friend I've had for a long time, and now finally a face to go with the sweet gracious lady I've come to know through the years. Our time was too short, but I am so glad that were able to connect.
Again it rained all the way through Tennessee ........ we picked up a rock in the windshield, and the crack kept growing daily. Finally - Oklahoma City and a chance to visit with Mary and Dave! (we tried to see them on our way to NC, just couldn't get our timing and mileage together) Mary is also a person with Alzheimer's. She shares the hosting job with Laura for our daily patient chats, and is a member of the Dementia Advocacy and Support Network, and the Coping With Personal Memory Loss groups that we belong to. Wade and I thought maybe we'd get to spend and hour or so ... NOT! They gave us the red carpet treatment. We got to meet the owners of the house, their three adorable dogs! It was the first time Wade had seen a long haired Chihuahua and was quite taken by them. Mary shared her TV film clip from the local newsbroadcast -- Wow! Now here is a spokeswoman for our cause. And then we went for a ride in Dave's airplane. Actually I was a bit apprehensive since I had such a bad experience last time we flew -- but that was on a commercial airliner, t! his is just a 4-seater. Having observed how intuitive Dave was to Mary's moods and needs, and knowing that he'd defer to set me back down if need be with no embarrassment to me, I decided it really would be a great adventure. Boy did that prove to be an understatement!
Wade and I downloaded the Harley and followed them out to the airport -- what ding-dongs!!! We are just too accustomed to the So. California riding -- we were way underdressed (and we had plenty of cold weather gear)-- and in the excitement of the moment hadn't given it much thought either -- so we were cold! The airplane is so beautiful -- blue and white and a cozy seating for four. At first when we were taxiing out I felt a bit concerned that I might have to bail on them all, but as soon as we started the ascent ... oh, my gosh ... what an exhilarating feeling - a slow gentle rise, almost like the feel of a Disneyland ride, and then almost like you ar! e suspended in air - the feel of any movement is indistinct in the cockpit, just the roar of the engine, until you look out at the landscape below -- how breathtakingly magnificent -- newly plowed fields, patterns and swirls, different colors in distinct tracts of land -- oh my! Surly Wade would trade his Harley for this! (well, wishful thinking you know
Left with the exhilaration of the plane ride even the 49 degrees didn't seem to bother me on the way back to their home. But this was not to be the end of our day with them, they took us out for a magnificent seafood dinner. What gracious friends, I do so hope that they will visit us in California and we have the chance to at least try and reciprocate for their most generous hospitality.
We arrived home on Wednesday the 29th
December 7. 2000
We got a start today on our Christmas shopping.I cleaned clean out my closet and pulled down all the little stuff that I have accumlated for the Christmas
stockings --- main goal here is to get down Uncle Sam's photo albums. I have invited my cousins Flo and Lousie over tomorrow to go through them with me,
so that we can sort through them and share them with the family. It will be one last present from Uncle Sam (he passed away in October, and I have been keeper of his albums for years), he would be most pleased with my decision.December 6. 2000
After a morning spent playing with the puppies and another championship round of Chutes and Ladders, Jake and I walked up to Chuck E. Cheese's. He had such
fun, and at the end of our time (over two hours!!! ) he ended up with enough tickets for 3 prizes. Such excitement, very serious he was about making just
the right selection. And of course being Jake had to pick one of them out for his sister. Poor little guy though , his Dad came to pick him up to take him
home after dinner -- he was so angry, and had such a very hard time expressing it. I sure do miss seeing them on a regular basis ..........SIGHDecember 5. 2000
We went to UCI today. We duplicated some of the tests I took two years ago in their human research studies and also took some new ones.They placed about a dozen electrodes on my head and face. the basic study was called 'Evoked Brain Potentials'. The studies which I participated in included listentening to auditory sounds,watching visual flashes, alternating patterns and responding to them by manually depressing a button on the correct prompt.We were there for better than five hours. I absolutely could not believe how well behaved Jake was! What a litle angel, guess I'll have to break down and take him to Chuck E. Cheese's
Well, at the conclusion Dr. Golub was able to share some preliminary results -- uh, oh improved again!! And these are tests which I absolutely have no control over as the brain wave response is measured to the stimuli. One of the things he explained from one of the tests was that the brain, when it hears tones, will have a period when anticipation of those tones can be measured in the brain waves -- in an Alz.D patient this anticipation time is expected to be a rather flat line , as mine was on the test two years ago. This year my brains anticipation response time is almost in the normal range. He's excited! What could have caused this --he's not sure that he's ever seen it before. We discussed my especiall pro-active year, and my favorite game on Boxerjam, Strike a Match. A game which does challege your memory, and a quick response time. Dr. Star came over while I was having my tests done and asked that we meet with him when they were completed. I had printed out my journal pages to give to the office at the Brain Institute becasue I wanted them to know just how distressed I was with Dr. Star's approach. He appologized and asked just what he could do to make it all better -so patronizing -- we'll I was pooped and didn't have a tactful bone left in my body. I'm afraid I was not very gracious, and told him that was was done could not be undone, what was said could not be unsaid. And would not let him off the hook so easily with his smile and cajoling attitude. I'm too pooped - no games - be responsible, own up.
December 4. 2000
Jake is here spending a few days with us. Wade started pulling down some of the Christmas decorations for the yard. Jake and I spent the better part of the day playinf Chutes and Ladders, Hi Ho Cherry O, and war. What a delight he is.. I kinda put off getting ready for Chrismas -- I think it may be February before I am..LOL, oh well Santa will come on the 25th my grandson has assured me, whether or not my house is decorated -- he said I didn't even need a tree! Santa loved me more than any Mina that there was. (is he a real keeper, or what??!!)December 3. 2000
We went out to breakfast at the airport -- boy, did I long to be back in Dave's plane again! We gave her her birthday present -- the video set of the Thorn Birds, one of those gushy romantic TV mini-series of the 80's ... took us forever to find it, but well worth the effort. She gave me a poem that she wrote on the train coming up -- guess she read it yesterday during her interview ... I'd like to share...................My Best FriendThank goodness, she gave it to me to read as she was leaving -- the tears flowed, and still do how can anyone have been so lucky to have been blessed with such a wonderful person in their lives, my daughter, my best friend.
- 12/2/2000 - Tina Knowles -
My Mom what an angel,
despite the life she's had.
So unfair, very hard
really, really bad.
She always made the best,
put on a happy face.
To hide the pain and frustration,
and keep up with the pace.
So talented, so smart,
so loving and sweet.
A best friend with a big heart,
someone you'd really want to meet.
Loved by all that meet her,
she has a special glow.
Leaves her special touch,
everywhere she goes!
She deserves the world
for all her kind deeds.
But struck with an illness
that brought her to her knees.
She fights it right now,
puts on a good face.
As she trembles inside,
for time is a race.
She loses a little
day by day.
The fight she once had
is sliding away.
I miss her laugh,
I miss her smile
I miss my best friend,
but all the while
She pretends all is fine
tries not to show
all the disappointment and sadness
her life has bestowed.
My heart is so heavy
my eyes fill with tears
For I'm losing my Mother
and all we've had thru the years.
Her love and her guidance
I can NEVER replace
But I'll always remember
her smiling face.
December 2. 2000
Wade picked up Tina at the train station about 8:30, what a wonder she is had this house whipped into shape in no time! The film crew arrived about 10 as scheduled and spent about 45 minutes or so setting up. Was a nice
group of people -- what a great job they have!! Our interview is to be part of the "Celebrities and Their Charities" piece that they are doing. They are from Oprah's Oxygen network -- Sharon Lawrence is the celebrity (NYPD Blue) and I am the charity! LOL They filmed us separately, so we have no idea what the other said .... We'll just have to wait until the piece is aired in March. Wade was really reluctant, but Staness, the executive producer and our interviewer put him at ease in no time. You know how it goes, six hours filming , 10 minutes of air time December 1. 2000
Had the carpets cleaned today, getting ready for the Holidays? Guess I got a bit absent minded when refilling our pill boxes and dropped a pill. When I bent down to pick it up I came up under the open cupboard and split open my head. We spent four hours in the emergency room. Believe me the cure was far worse! After they scrubbed it and shaved it they smacked a couple of staples in. Now how is it that they have a topical spray for the football players that they just spray on and they are back in the game, no pain and the hospital does all this with nothing!! I get the staples out in a week, but I am leaving in far more pain than I came in with. And I still had to come home and bake a cake for Tina's birthday, as she will be here tomorrow (her birthday is the 4th). But, I used the recipe shared with me by my Aunt Ginny in NC for pecan cake, and I know it will be a hit.November 30. 2000
Well, we were up early this morning trying to get back into the swing of things around home -- MOUNTAINS of laundry, a dirty RV that needs to be unloaded and cleaned, and a house to get into order before the Oxygen film crew is due on Saturday. But today I went to PRI for the check-in for the Vioxx study. Obviously not one of my better days, I didn't do very well on the testing. I was glad though that the director, Chuck Wilcox, has taken over the interview portion -- what a really nice man. Yes, it's the same old stuff that they always ask but he has a way of putting it into a conversation rather than just rattling off question after question. They threw a few
twists in this time though, gave me three 'new' words to remember that I hadn't heard before -- just when I'd gotten pretty comfortable with the penny, table and ???? oh, well LOL! Also they had me copy the clock on the wall this time.Friends,
This is the first in a series of articles that I am submitting to the Alzheimer's Association, The Ribbon, AARP, and other publications - There are many unsung 'heroes' in our lives, people that have profoundly affected the way we are today. For me the people in my series are not published well known authors, but rather real people making a difference by their caring, their outreach, their ability to share unselfishly. These people have made a difference in me, in my life, and in my ability to find a joyous today and a hopeful tomorrow. Perhaps you'll share your stories too. - Jan/Mina
Hero -- a small word, uncomplex, simple, that holds fathoms of unsung praise and awe at the wearers abilities, accomplishments, being.
Not everyone has heroes in their lives - I am blessed, as I do. In my present family of persons with dementia, the heroism is staggering -- and I am sure should I get to know all of my cyber-friends on a more personal level, the ranks would grow.
Montana, quiet place, majestic beauty. At home here you will find a good friend, and a hero - Laura. Far from the city, far from the physical contact of the outside world (since she no longer drives) is where you will find her.
A mile or so off the Highway to Yellowstone, up a dirt road in the "Little Brown House" on the far side of the main Farmhouse. Roy, her Boarder Collie will be there to greet you, and maybe the odiferous territorial markings of the skunk family who reside under the porch. You'll most likely find her in her favorite chair, Chrissie her (blind) cat at her side, kittens frolicking at her feet, laptop computer firmly in place, busy on the Internet connecting lives, giving hope and understanding to the many who call her by various names -- Laura, Tanarose (short for Montana Rose), List Mother, PRx_Tanarose (her chat hostess name) - a multidimensional person that is a Godsend to many.
Laura found me about three years ago wandering aimlessly about on the Internet, desperately trying to find support for my diagnosis of Alzheimer's Disease in Caregiver message boards, as there were none that I could find for the patient. She invited me to join a support system called Coping With Personal Memory Loss ( eGroups : CWPML ) a site that she created not just for the AD person, but for anyone with memory loss problem. Laura's is the ONLY site that I am aware of on the Internet exclusively for the support system of the dementia patient. Here I was able to connect and share for the first time with a group of people who understood my dilemma and frustrations, as we all shared the common bond of dementia. Then as a personal challenge and incentive to me, she gifted me with a web site. Jan/Mina's Home Page She still maintains that site as my webmaster, adding my daily journal for me and has created within the site a page for photos, and published articles as well a links to other related sites. Laura shares her life support with many others too, and helped in the creation and founding of the Caregiver's Army, eGroups : CAREGIVERSARMY a group that is collecting signatures to bring the need for more research dollars to the forefront in congress. When she became a member of the PlanetRx site she became a chat hostess, and brought the CWPML group together in a more personal setting. As we shared and bemoaned our lack of support within the Alzheimer's community,! under her leadership DASN (Dementia Advocacy and Support Network) eGroups : DASN was founded. She pursued and attained a nonprofit status for the group, worked diligently on the design of our mascot and organized the presentation of DASN to the Alzheimer's community at the Heartland (KS) Memory Walk this past October.
With lofty goals and ideals -- we look to the future as a hopeful promise. And yet she is tireless, committed to helping people. Her outreach continues, DASN now has members in the US, Canada, UK and Australia. But I have only been able to share what I know of her endeavors, and there is so much more................ did I forget to mention, Laura is also a person diagnosed with Alzheimer's Disease? Yes, 2 years ago at 59. Because she also has MS her symptoms and distress are compounded and complicated. So when you go to visit her Web site Laura/Lorrain/e's Home Page you will find the diversity of her support of other people. You will find a strong, caring woman who helped to give me purpose to this crazy journey of AD, who supported, who held my hand, and who gave me that 'swift kick' when I needed it. My hero, my friend.
Jan ~ Mina Phillips
Nothing the heart gives away is gone ~ It is kept in the heart of others . . . The Heart Remembers
Contentment is not the fulfillment of what you want, but, the realization of what you have.
November 10. 2000
Trista from the oxygen network called again, and they will be here on the2nd of December to film Wade and I and Tina. Should be interesting! Ashton came to spend the next two days with us. We were hoping to be able to take her back with us to North , but her Daddy just isn't of a mind to let her go...... ...........SIGHLooks like the local Alz. Ass is going to follow in Heartland's footsteps and give us a page in their newsletter. Also, they will have a patient rep on their board. For now it will be me! :) I was supposed to have my first meeting with them next week, but it looks like we will be out of town (no, still not certain) so my participation will have to wait until February when they next meet. Actually, I think it really works out for the best, as DASN should be on a smoother keel then.
Tina brought Ashton by late this morning, we all went out to lunch. Tina helped me finish up on the belt racks. Ashton painted clothespins for a Christmas card wreath while I cleaned house.
November 9. 2000
Finally was able to connect with my good friend Marilyn. She is in town from Switzerland for an angiogram. Last time apparently she 'died' on the operating table during this procedure -- quite an interesting story. She really does have a different perspective, Alz is a part of her life for sure, but easily discounted by all the beauty that she finds around her that she can still enjoy. She promised to become more involved with the Dementia Advocacy and Support Network when she got back to Switzerland as she was getting a new computer and didn't have to share her son's.Well, IM off to watch "How The Grinch Stole Christmas" with Ashton. I have really enjoy having her around, I just don't get to see her or her brother often enough now that they have moved, and I have curtailed my driving.
November 8. 2000
I ran right into the glass door on the rear of Wade's Jimmy - smacked myself a good one for sure! It wasn't all the way open. just at an angle where I couldn't see it, so walked right into it and it caught the top of my forehead -- dang that hurt! (and the lump to prove it still does)! Wade brought me home at noon. Good thing too. I have another order for the karate belt racks, that I need to have ready for our daughter tomorrow. I have been so behind on my participation with DASN I decided to just call Laura, and touch base with her in person so to speak. She is moving ahead with great speed on our newsletter, and getting it organized. Shannon, a rep from the Heartland Alz. Ass is really being extremely supportive, and is offering DASN a page in their quarterly newsletter. Also, she is trying to obtain a chatroom for us on the Heartland web site. So very exciting.November 7. 2000
I am sore all over! Spent most of the day scrapping Contact paper off of the walls in the kitchen. What a mess, it must have been up for at least four years. But our work is for the most part done. Carpet and kitchen & bath flooring will be installed tomorrow, and then we will just have the little things left to do -- installing new door knobs, a couple of light fixtures and missing globes.November 5. 2000
Spent most of last night tossing and turning ... thinking, thinking, thinking! We got bad news in our chatroom that the PlanetRx will no longer be hosting us. Laura is right on top of things though and has found us an alternate room. I proposed to the group last night that we contact the National Alz. Ass, and ask them to host a patient chat on their web site. I believe it is a natural both for the Association and for DASN. Laura had asked us to write to the PlanetRX people to let them know just how important the chat was to us, she has copies of those letters. Anyway, when I got on the board this morning my prayers, had been answered and my worries put to rest. Another member of DASN, Phil had written the most eloquent description of DASN and our goals and aspirations -- I think coupled with the letters that National can't possibly deny us!Oops! - I was trying to get a jump on my journal before we left and hit the send instead of the save for later --with a dip! anyway hang on to it - I might
November 4. 2000
I am one POOPED PERSON! Painted on the Vacancy all day. Rather than leave this blank I will share my latest 'soapbox presentation.' The man who wrote the following quotes is a clinical social worker who deals directly with newly diagnosed patients. He truly does a grave disservice to those he counsels. (These were his thoughts)> Patients with AD do not get
> better, they only and always get worse.
(and mine)
I think the time has come in which the Alzheimer's Community in general will have to take a different look and approach to Alzheimer's Disease as more and more patients fall into the category of EOAD (Early Onset Alzheimer's Disease), and drugs such as Aricept and Excelon are now available. This newest generation of patients are younger (mid 40' and 50's), the baby boomer generation if you will. We are a different breed, more physically fit, more apt to question our diagnoses and try and empower ourselves with knowledge.
My mother on the other hand readily accepts her memory loss as part of growing old, and would never even think to try and do anything to help herself, only accept.
The following is an excerpt from my journal: (I was discussing with a friend today the difficulties in being a person diagnosed with Alzheimer's, and yet in limbo because the disease's progression has been for the most part halted. I think one of the main points that we agreed upon was the fact that Alzheimer's Disease continues to be viewed in a fatalistic light in most sectors of the Alzheimer's community. No one expects the patient to do anything but decline, and reinforce that by the care that they give. Mostly containment, maintenance. Little motivation (if any) is given to the patient for rehabilitation, --- acceptance of decline, acceptance of loss of independence, in essence manageability -- the ideal patient becomes one who is quiet and happy sitting in the corner watching TV.
Sad state of affairs, and yet understandable -- the decline into dementia is not anything to be desired by the person losing oneself or to the person having to deal with the living death till its end.)
My tests scores are again holding - 4 years. There has been decline, subtle changes that only I can detect, I don't think tests can possibly cover all of 'who we are'. Because of the influence of people like Morris, I have changed. I refuse to allow myself to sit in that corner waiting to fall off the edge of this plateau. It is almost as if the coffin nails are handed to you when you are diagnosed. You are given no encouragement, no hope, no expectation of anything but rapid progression into dementia. But I am here to tell you this is NOT always the case. Slowly but surely we dementia patients are connecting via the Internet, and finding we all have similar stories. Early diagnosis, early starting on the Aricept, and a forestalling of progression, and a community of people around us that rather than applauding our ability to ward off this monster are disappointed that we are not declining, after all it is the expected prognosis. We are the first generation of Aricept users -- drug trials have not tracked us -- we are pioneers. And you may still think in terms of Alzheimer's as being a disease spiraling downward, but we are proving by our very lives that it is not. No, I don't have the medical jargon to back it up I only have the lives that I am connected with through DASN (Dementia Advocacy and Support Network) If the continued response to this diagnosis continues to be expectation of decline, then theAlzheimer's community does a grave disservice.
I gave a talk recently and (excerpt from my journal)Brain.com was also there, VERY exciting, they have come up with short simple testing that will indicate if there is possible MCI (mild cognitive impairment) which would warrant a doctor doing further testing. Much like a screening for Diabetes, or a yearly pap smear, no definitive diagnosis, just maybe an indicator that something could be amiss. This is so exciting to me, it would be marvelous to knock down Alz. D before further progression.
These are exciting times! We cannot sit on the negativity of the past if we are to move forward. The generations of victims that were not able to benefit by the newer drugs have given their lives for research, forunderstanding, for the pioneering of new treatments, hope is on the horizon with vaccines to prevent, drugs that will halt and cells that can be rejuvenated.
November 3. 2000
TGIF ! Did you know that blondes write this on their shoes?? Stands for: Toes Go In First ...... always willing to share information on this site My dear SIL Margaret spent endless hours downloading from Napster some great CD's for me. One with all polkas -- they always make me feel happy -- and the others with the New Christie Minstrels. They were a folk group very popular in the 60's, here locally in the LA area anyway. I do believe Tommy and Dickie Smother's stole their standup comedy routine directly from these clever folksingers. I don't really remember the lyrics, but as each song is played, the joy of the time comes back to my spirit. Thank you! I will treasure these always!
Got a bit wound up today with a response to one of the message boards, it really riles me that a professional working directly with newly diagnosed Alz. patients is so negative and fatalistic. - He is stuck in statistics and is ignoring the reality of the progress that has been and is being made. The post was rather lengthy for the WUSTL board, but oh well.....
Spent the morning at one of our rental houses -- these people not only stiffed us for last months rent, but totally left the house in shambles. All the flooring will have to be replaced and we will have to patch and then texture the walls there is no other way to repair the mess. Wade and I filled an entire dumpster to overflowing with the trash and pieces parts of broken furniture. We never have pursued anyone to court but I do believe this one will mark the first for us. This will for sure fill my time this weekend ..........sigh
November 2. 2000
Jeff spent the day installing a dish system for us, actually he started yesterday, it has become more than a little frustrating, but he was able to get it up and going today. Our cable bill has just really gotten out of hand, seems they raise it every other month.Got a nice phone call from Trista at Oxygen Network. I really enjoyed talking to her, tried hard to answer all her questions (even threw in info about DASN
And as for my (mis) diagnosis .... Well, things have settled down, I've taken that 'deep breath', and will wait and see what the Dr. next proposes to do in support of his "gut feeling ," as he called it. I really wish he had kept it to himself until he could present it in a factual manor - I would call his attack thoughtless, and grandstanding for the benefit of the student as the only thing he looked at were the MMSE exam results. I hope he can prove his diagnosis of depression. But I will not be put in a position of proving their diagnosis of Alz. D. again.
Either way the coin flips on this one my advocacy will be stronger.
It will be interesting to see the results of that brain activity test. We have a vacancy and will work the weekend painting and cleaning, so hopefully I will be able to go in early in the week.
November 1. 2000
Had to get up early this morning to take Wade in for another endoscopy to check on his progress with the drug study he is on for GERD. Good news, the medication has cleared up all of the lesions on his esophagus. It has really made a drastic difference for him, hope he will have access to this drug, or a similar one after the study is over. While Wade slept off the effects of his medicine, our son Jeff and his wife Windy helped me with the dismantling of Halloween -- what a mess! Sure came down a lot quicker than it went up though! I am filthy and tired, and very glad that they stayed to.October 31. 2000
Happy Halloween! I have to tell you, I was so glad when the sun set today -- my job was done! Got the last of the candles lit and came into the office and settled in with the pups. I stayed in most of the evening but went to check on the candy supply. Now mind you I helped set this all up, and so know what is what, but I found myself so unnerved by our neighbor playing a mad doctor with the innards he pulled out of the dummy -- absolutely grossed me out as the kids would say. Then Wade had me go through the maze with him - I hadn't been through that since I was busy elsewhere getting things done. Pitch black, he was my tour guide with a flashlight, the tunnel was filled with smoke from his fog machine - some one came out with a mask on and scared the ---- out of me I screamed and tried to turn around to get out but there were people behind us so I had to go on through --hands reached out, spider webs brushed my fa! ce and the floor pooped as I walked across bubble packing. I felt SO STUPID - I ended up going in the back yard by myself and crying, and still can't seem to settle down, I'm scared. Even some of the people in costume frightened me -- and I know they are in costume!!
And yet I have this unsettled feeling, why is this affecting me so, just the brief time has me unnerved.October 30. 2000
Got a call from the Alz. Ass., the Oxygen Network (I believe that is Oprah's) is doing a program for Life and Times or Lifestyles -- not sure which -- on celebrities and their charities. They are covering Sharon Lawrence who supports Alz. D. So the Ass referred me as a source for background information. I tell you this is great, Alz is coming out of the closet, we are getting more and more publicity ... and I might as well slip in some info on DASN if I can!Moved the DeLorean out of the garage and over to the neighbors so that we could get the support structure up for the tunnel throughout he garage. We got most all of the maze and tunnel covered in black plastic today, and hung up the black lights. Did put out some stuff on the lawn,( AKA graveyard) , and had to keep the pups confined to the back yard because they were wreaking havoc! We are supposed to have help tomorrow to put the finishing touches on the graveyard -- put out all the dummies, set up the 'blood bank' and 'ghoul-aid stand', strobe lights and candles..... whew!!! this is a job!!!
October 29. 2000
Well, it is time to get ready for Halloween again. Wade used to go all out for Christmas, but decided it was much more fun and satisfying to interact with people at Halloween. So every year it gets just a little bigger, so we have to get an early start on it. We pulled everything out of the cupboards and down from the rafters -- our dining room looks like a battle zone from a horror flick! Body pieces, de- tached heads, skeletons, tombstones, masks, mannequins ... an assortment of odds and ends for Halloween. We worked on getting the fencing up around the graveyard today, and some of the framing up or the maze tunnel. I am tired!!!October 28. 2000
We went by and picked up Tina to go to the wedding with us -- rain clouds threatening. The wedding was held on the campus of the Nazarene University Point Loma, in San Diego, right on the Pacific. The wedding venue had to be changed from the lawn overlooking the ocean to a small chapel because of the unpredictability of the weather. (This particular little chapel was the only thing available -- it had been scheduled for demolition justthe week before and something had held it up -- the bride was sure it was the hand of God!) What a lovely ceremony. The groom comes from a family of 11 siblings and they all play some sort of musical instrument. So we were greeted with music from a harp, flute and violin. One of the brothers sang a song before the wedding, and played the guitar. The groom also sang a song he had written for his bride during the ceremony. Very romantic! During the ceremony the bride and groom paid very little at! tention to the minister, exchanging words, small talk, and blushes - turns out he was the grooms father. A lovely wedding, it really is nice to see the wonder of young, all encompassing love. The wedding was the daughter of a friend of mine that lost his battle with Alz. D early in the year. She is a very special young lady, and I know her dad is pleased with her, and was surely there beside her in spirit.October 27. 2000
We spent the night in the RV. The rain came down steadilyall night. Very soothing to the soul.UCI called today. They want we to repeat a test that I did for one of their clinical studies. I believe it follows brain activity. What they do is put electrodes on your head and then have you respond to sounds, and picture that are flashed on a screen. They will be comparing the results to ones done about two years ago. Should be interesting! I hope we will be able to schedule it soon.
We are going to a wedding on Saturday and so went off in search of a gift at a Costco store. When we entered there was a thin, sickly looking young man sitting near the entrance, he looked so very much like one of the employees I almost asked him if he was his brother, but not wanting to embarrass the man or myself, went in to find Rob and ask him! Rob has become a very special person to me. He worked in the pharmacy when I had my first prescription of Aricept filled. He had to special order it for me as it was a new drug. We became friends of a sort after that initial exchange. He would always come out to the store and greet me when he saw me, ask how I was doing, and help if ever I couldn't find something. A very active young man (in his mid thirties) he coached Jr. High basketball, and was a 'roadie' for a Christian Band. At about 250 I'd guess and about 6 foot tall his booming voice and broad smile always made me feel bet! ter about the day. He always remembered the Memory Walk, and sponsored me. I never did find him in the store. When we were checking out I rather 'hitchhiked' on a conversation. "How sad. He is such a special man to us all." I apologized for my rudeness, and asked the checker when it was my turn if they were perhaps talking about Rob. Yes, he was there visiting. He was the man I saw coming in... a slight man of maybe 120 pounds, a sickly looking man, it was Rob. Diagnosedjust a month ago with a virulent cancer which will take his life probably before spring. He had left before I got a chance to talk to him. But that is the way he wanted it, or he would have spoken to me. I know I have told him in the past how great he was to me, but I would like to have told him again how much his joy, comfort, and understanding support meant to me. My heart is so very sad -- empty for the loss of a very decent human, who always seemed to think of others first. He will be missed here, but he will also be an invaluable asset to heaven.
October 25. 2000
The 299th day of 2000. There are only 67 days left in the year.This is my horoscope for today:
The dualities of the Libra Moon only serve to confuse you over the next few days. There are too many sides to the story, and each has conflicting emotions attached. A mystery becomes an endless loop, one that could very well put everyone on edge and have everybody pointing a finger in a different direction. So rather than give into the all the melodrama, you might consider staying in the background and doing what you can to make sure that nothing gets out of hand. Somebody may be spoiling for a showdown for the wrong reasons.
I think I will heed the advice of my horoscope. I had a lot of support today from my friends. Especially in chat, where they better than anyone can understand the frustration of yesterday. I have been unsettled all day. I took some brief notes during chat, I wish I knew how to capture the chat in whole -- it would do me good to be able to reread the support, common sense, and understanding shown there. One of the more difficult aspects of yesterday, that I can now put into words because of my friends, is that rather than perhaps being applauded or even questioned about how I was able to do as well or better on the testing, instead I did not meet their expectation and anticipation of decline and the Dr. instead challenged the diagnosis that they had given me, put me on the defensive and asked me to prove to him the diagnosis of Alz. D. My brother must also carry some of the family's ESP gene
Yesterday is fading though into the echoes of yesterday, and as usual particulars are falling by the wayside, little bits and pieces still remain though. I remember that towards the end the Dr. kept saying that I was sad - I didn't think I was, I honestly thought things were finally going quite nicely for me in my life. He told me I was lazy, and didn't cook because I hated it -- yes, I guess I am lazy, but why would he say I hated cooking, I certainly don't. I've never been a gourmet cook, but I have always enjoyed cooking, especially baking. So I am left with how people made me feel --- Pat the Dr. who gaveme the tests was encouraging, Dr. Star wanted me to prove to him that I had Alz. and left me feeling scattered, frustrated and low in esteem ... the message I got was that I am a sad, lazy, depressed person who has faked an illness for many years. he bombarded me with more than I could handle with his questions, and my friends and brother who understood, who rallied to my support and nurtured my soul in its disrepair.
October 24. 2000
Well, the reevaluation testing is over. I did great! But, I am left feeling quite confused, elated and somewhat uncertain. I have begun the last year on a new path. I have been trying to overcome the negativity attached to my diagnosis of Alz. D and make a concerted effort to do more to help myself rather than just sitting back accepting the fatality of the diagnosis. Part of the change came with the huge inward sigh of relief of having proven their initial prognosis wrong. (I was told that I the progression would have me in a nursing home within 5 years.) Then I came in contact with Morris Friedell, whose writings on rehabilitation for the Alz. D patient REALLY got me to thinking. I was just accepting, not doing anything to help myself.So I have been trying to stretch my ability limitations, find perhaps other ways of doing things. Games, brain challenges, awareness of new medications. I really believe from the first week of starting Aricept that there was a marked difference in my abilities. (I will have to go back and do some research on my past journals on this, to help refresh own recollection) My test results for the past 3 years have remained basically unchanged.
Today I saw a new doctor -- new to the University and new to me. Very personable, very likable who now thinks that perhaps I don't have Alz. D at all. He is saying that perhaps this is just depression. I would be happy not to have Alz. D., I am confused at the same time. How did the MRI substantiate the Alz. D testing so well 4 years ago? How is it that my tests results have stayed basically the same? Has my brain work paid off? Is the UK story of Aricept supported by me? I'm rather shell-shocked, I need to look over what I have written these past 5 years -- is /was / could it be just depression causing all this? As you know be you patient or cg, it is hard to explain the subtle losses inherent to the early stages of dementia, for it is usually something that isn't easy to explain. Did I answer his questions wrong? Was I too flip? This is one of my problems with doctors and always has been, that I am so nervous my answers tend to be silly, flip and that I try and answer what (I presume) they want to hear -- don't make waves!
So, do I believe this new doctor? This is the first time he has seen me, he had a student in with him, and did little but look at the results of my mini-mental exam on which I did better than last year. He did not administer any of the tests (final results are not in yet). And seemed to give the student the nod -- 'see I am right,' whenever I answered a question. As I said he is new. He is personable ... but, is he right?????? My confusion with my life hasn't changed just because he said it is something else. And then again, I have been on an antidepressant throughout this whole testing time -- why isn't there any indication of a fluctuation due to depression. Because we did discuss that last year I was discussing suicide, not immediate, but in not wanting to be consumed by the final stages of Alz. D which panicked the heck out ofthem. So I don't know - I would like to believe it could be true, but I am not sure it would explain all that has gone on for the past 7 years.
On a brighter note. The Orange County Alz. Ass has a picture of my team and I on their site. There is also one of Joe & Penny and a little blurb about us both. Toggle down the page, and if you click on the picture it will be enlarged mwmissioncht
October 23. 2000
My brain is in overdrive I think!! I spent the better part of the day on the computer playing games! No, nothing to improve the brain, just hours of the card game hearts, and slingo! I did manage to get into chat this afternoon and evening, but after that ... more games. LOL! Just not something I usually do, but Wade was on his computer all day bidding on e-bay and u-bid -- he is a hoot! Anyway my brain is fried! Can't believe I have been on here most of the day -- my eyes sure know it though! Did manage to answer a few directe-e-mails , but not many LOL!!!October 22. 2000
Typical Sunday in that we went out to breakfast and on a ride on the Harley. Not so typical in that we didn't leave the house till after 10:30, as Wade was on the computer with e-bay, checking out his bid items, -- and we ended up riding to some of the larger computer stores to check out some of the laptops he was bidding on. Granted we went by a rather circuitous route to get there, nonetheless not the usual 'Harley hangouts' LOL Came back early (to check the bids
Jeff, Windy and the kids came by for dinner. We had a nice visit. The guys fixed dinner, Wade BBQ'd hamburgers and Jeff fried up some fabulous potatoes with garlic and onions (he's always been a good cook)
October 21. 2000
Well, Wade has found e-bay!!! So I am now able to have more time on the computer since he is on his computer more now! I was able to finally thank all my visitors who had signed my guestbook. Seems sometimes that I am just running in circles chasing my tail and the harder I try and get things accomplished, the further behind I get! There was a great piece on Aricept today -- really exciting! BBC News | HEALTH | Alzheimer's disease 'can be reversed' As I have said to many of my friends, I go in for my reevaluation on Tuesday and I hope to help prove this research valid and correct!
October 20. 2000
Seems like we have been running all day, but have gotten little accomplished.We had the windows tinted on the RV, in hopes that it will help with the heating & cooling. It was a 4+ hour job, and we had to keep going back to check on it.... Wade didn't want to sit there all that time, and yet wanted to make sure it was all done the way he wanted -- I know that they are glad to be done with the job and see him gone! LOL
Got an invitation for another speaking engagement, I may have to pass on this one though, as we might still be going to NC for Thanksgiving. I hope that they will consider scheduling for another month. I'm very excited, only with opening up dialogs can we make changes.
I am really upset with AOL -- my auto dialer went for over 2 hours before I was able to make a connection this evening. I may just have to find another server -- I do like he simplicity of AOL, and it's many features, but is of little use if I can't get on-line when I need to. And this is the third evening in a row that I have missed chat. I am not a happy camper!
I have been such an extremely bad hostess that I have neglected to thank all my new visitors who signed my guestbook--1st thing on my agenda tomorrow!
October 19. 2000
I was discussing with a friend today the difficulties in being a person diagnosed with Alzheimer's, and yet in limbo because the disease's progression has been for the most part halted. I think one of the main points that we agreed upon was the fact that Alzheimer's Disease continues to be viewed in a fatalistic light in most sectors of the Alz. D community. No one expects the patient to do anything but decline, and reinforce that by the care that they give. Mostly containment, maintenance. Little motivation (if any) is given to the patient for rehabilitation, --- acceptance of decline, acceptance of loss of independence, in essence manageability -- the ideal patient becomes one who is quiet and happy sitting in the corner watching TV. Sad state of affairs, and yet understandable -- the decline into dementia is not anything to be desired by the person losing oneself or to the person having to deal with the living death till its end. We didn't solve any of the problems inherent with Alz, but I think we came up with good ideas. This would be a great round table discussion with CG's/patients/Alz. medical community -- I think it would benefit all, seeing and trying to understand from one another's unique perspective.Tried to get into chat, no luck couldn't get on-line for over 2 hours. AOL can be SOOOO frustrating.
Heard from my old friend in Switzerland, she will be here next month for her yearly Alz. D exam ... really looking forward to seeing her again. As far as I know she and Joe (Joe's Quest) and I are the only ones left from our initial Early Memory Loss Group who are still out functioning in the world.
October 18. 2000
I worked on cutting the lumber for a dozen of the karate belt racks. I'll leave the sanding till tomorrow.We picked up the RV from the repair shop today. YIKES! We had to have the refrigerator replaced, for the cost of the special fridge that runs on propane and electric I could have had two top of the line units for the house. They also installed a new went fan in the back bedroom, I'm going to like that. The only real complaint I had was that they charged us $70 for 1 (one) pop rivet in the window crank. Complaining does help sometimes. When I pointed out the charge to the service manager he agreed it was out of line but a valid charge since the tech just has a code for each thing he does ... ah the computer age! Anyway, he's given Wade a certificate for $140 off any labor or service next time we come in. Works out for us since the generator is about due for its yearly maintenance. It has come back filthy inside & out though so I guess tomorrow we'll be cleaning.
After chat this evening I am all fired up about approaching the National Alz. Ass for a patient representative to sit in on their board meetings. I am going to try to compose a letter tomorrow. But for now it's adios!
October 17. 2000
What a good day! I was invited by Frank Bonetti of So Cal Home Care to address the Continuity of Care of Orange County monthly meeting. Frank and I seem to keep running into each other at Alz. D conferences, and Memory Walks, so this was really a pleasant honor to be asked by him to speak. Brain.com was also there, VERY exciting, they have come up with short simple testing that will indicate if there is possible MCI (mild cognitive impairment) which would warrant a doctor doing further testing. Much like a screening for Diabetes, or a yearly pap smear, no definitive diagnosis, just maybe an indicator that something could be amiss. This is so exciting to me, it would
be marvelous to knock down Alz. D before further progression. Also, I was seated next to Linda Scheck, the director of the OC Alz. Ass. Had a GREAT discussion time with her during lunch, got a lot of patient support ideas out to her. We discussed DAS Network, and I said that part of our team mission was to get a patient representative on every Alz. Ass board that we could, including National. Guess what? Tomorrow is their board of directors meeting,
and she is going to present my proposal! I am so excited - I told her I really didn't need a vote, just would like to have a patient voice on the board.Wade said my presentation went well, I never know what I'm going to say! I had taken along the brochure from the Sunnybrook & Women's with highlighted points as Wade thought it would be a good road map for my speech. Well, I looked down at it more than once but none of the words registered ..LOL! I did try and make a point that the most important thing that they could do as caregiver's in whatever capacity their organization represented was to make the patient feel safe, secure by offering a kind word a loving hug or pat ... we may not remember them as patients but we will remember how they made us feel. Also to tie into the Brain.com presentation that followed mine, I hit on the need for rehabilitation not fatalization of those of us recently diagnosed.
Of course at chat this evening I could hardly contain myself, I was SO excited -- really a good day. Even if they were just on the shore cheering, it sure felt good. And if Linda thinks that I will forget about a patient sitting on the Alz. board as a patient rep ... ain't no way! DASN's time has come!
October 16. 2000
Monday is laundry day around here! I have no idea how two people can dirty so many clothes!Got a couple of nice surprises in the mail today, a card from a fellow DASN member with the picture of a huge turtle's backside ... the Dementia Advocacy and Support Network has for our mascot/logo a winged turtle -- so it was really cute. Also from Canada Christine sent me a number of the brochures that the Sunnybrook & Women's Hospital had printed based on my correspondence with Christine. Titled 'A Personal View of Living with Early Onset Alzheimer's Disease' Opening a Door to New Understanding, I am so honored ... wow! We've talked about this for so long, it really is exciting to see it in print. And of course I am finding all kind of things I should have said and didn't, and said some things that probably would have been better off restated or just left out entirely. LOL A polished writer or speaker I'm not, just passionate about making changes for those that can't. I try and channel my anger and frustration at solutions, understanding and hope.
Morris came up with another doozy the other day in one of his posts, and it really has been rattling round in my brain.
"Sometimes when people cheer loudly the efforts of shipwrecked persons to swim to shore, it's because they have no intention of diving into the water to help them hands-on."
That is so much the way I feel about the compliments and encouragement I get from the Alz. community in general --- I'm cheered from the sidelines, my ideas are listened to and applauded, I'm encouraged to continue on --- but, it is just so much lip service for they have no intention of making changes for the betterment of the patient, charge is scary - status quo has always worked ... don't rock the boat they may fall in too.
This is a Canadian group that contacted me via the Internet that made the brochure. They are diligently working to meet the changing needs of the newly diagnosed with Alz. D ... they don't just talk the talk, they are also walking the walk -- granted with baby steps, nonetheless forward not stagnating. I firmly believe as we become more active with the DAS Network that we as patients can make a difference. I do so hope that we will be accepted as at least 'guest' board members in the Alz. Ass organizations -- our input could be of great service to other patients newly diagnosed and beginning their journey, and to those in the early stages of dementia.
Well, down off of my soapbox for the evening ... LOL Need to hop in the shower, busy day tomorrow!
October 15. 2000
We went out to breakfast and a short ride on the Harley today. At the restaurant I spied a dear friend from the early days of my memory loss group, her husband ended his journey about 2 years ago. It was nice to see her, she always was so very encouraging to me in the days when I was just starting to speak out on behalf of the patient needs. And she hasn't changed a bit! She still gives such a warm feeling to my heart. We talked about her moving on and she quipped that she wasn't sure if she was moving forwards or just skirting life by moving sideways! Really lovely riding weather, between 75 and 85 most of the day. We rode by Disneyland to check on the progress of the new theme park that they are building in the old parking lot ... Wow! did we ever get turned around, new freeway entrances, lots of construction and many, many changes. Not to sure that I would be able to navigate this on my own anymore. We had season passes for 4 years and it really was a home away from home for me. But when they started construction of the new park it just became too hectic, so we let them expire.
I'm making karate belt racks to sell at the local dojo's so I worked a bit on the flyers today. Hopefully I haven't bitten off more than I can chew with this endeavor.
Missed talking with my friends in chat at Planet Rx today, but for some reason it just wouldn't let me in :(
I also posted to some of the boards that I am on the fact that the founder of the "Memories in The Making" program, Selly Jenny, is in mortal combat with cancer now. A VERY proud woman she'd have my hide if she knew, and yet I know that every word of thanks and appreciation for all that she has done for the betterment of the Alzheimer's patient would be very appreciated. Her mother had Alz. D, and Selly was one of the founding directors of the Orange County (CA) Alz. Ass. and served on the board of directors for many years. If you would like to drop her a note please contact me ( cwadephill@aol.com ) and I will forward her snail mail address.
October 14. 2000
I'm still trying to prioritize my priorities LOL .. unsubed from two message boards, mailbox was overwhelmed with their postings ... trying to catch up on letters I owe and of course I need to fill in some more of the missing gaps from these past weeks.We spent a week at our time share at the beach, it didn't turn out to be very relaxing as we had to run home every other day to make sure the pups were okay and to take care of business. Got settled in on a Friday afternoon.
Luckily it is only 45 minutes from home. We were there for the Tall Ships Festival on Saturday ... great fun! We got bikes and pedaled ourselves over to the harbor. They had an encampment set up on one side and a pirate's lair on the other. Both groups in costume were very convincing - The ships sailed down the coast in full sails -- what a beautiful sight. They had to come up the harbor entrance with sails furled though, and as they would come into sight at the entrance of the channel the mock Army encampment set off blasts from their cannons. We went home again for the night Sunday as I was very honored to have been asked by the president of the National Alz. Ass to join with David Hyde-Pierce, Shelly Fabares and Maureen Reagan in speaking before the media and press for the Memory Walk promotion on Monday. I was really excited about meeting Maureen Reagan, as I had only heard about her and never had the honor before. What a gracious, very funny lady. Unfortunately the engagement was set for the day after the Emmy's, so not many of the press core showed ... and David was dragging just a bit
In my presentation I mentioned my friends who I felt were helping to give a new perspective to the Alz. D patient, Morris Friedell who had been invited to present his paper on Rehabilitation of the Dementia Patient, at the World Alzheimer's 2000 Conference; Joe Timassy, who had left on his personal quest to spread the message of Alz. D across the US, starting his journey at the Memory Walk in 1999, and who would be back to join the 2000 Walk. I also had the opportunity to speak about the Dementia Advocacy and Support Network. I am proud to be able to have the opportunity to be part of the dementia patients across the nation, and the world on behalf of ourselves and other patients who are not afforded this extreme luxury.
Joe and Penny completed their Journey Across America (Joe's Quest) and visited the 48 United States spreading the message of Alzheimer's. They attended the Alz. World 2000 Conference, and arrived back in California in time for the Memory Walk and to visit and share a meal with us at the Time share. It was so good to see them back safe and excited to get on with their next project, editing all their film into a documentary about their trip.
Penny also hopes to write a book about their journey. I have no idea where they get all their energy! We invited them to be part of our Memory Walk team and were very proud to have them join in with the "Phamily & Phriends"
We hadn't been out in the RV for about a month so decided to take it on a 'run for the border'!! lol That's Stateline Nevada, luckily they had a Harley rally happening that weekend so it was an easy task to convince Wade that was the direction we should head! It's an easy 4 hour drive. We left about 10 in the morning, Harley in tow, and got to the stateline Casino's about 2. We walked around a bit only to find out that not much was happening till Saturday morning, so to keep me out of the casino as long as possible Wade proposed driving into Las Vegas to our favorite restaurant there - Ellis Island. So we downloaded the Harley and changed clothes and headed on in to Vegas, the wind was just starting to come up. Oh my goodness, by the time we had finished our meal the winds had really kicked up -- gusting up to 40mph. Poor Wade felt like he was going to pop I'm afraid, I was holding him so tight. The ride back to stateline was the longest 45 minute ride I've ever taken. Really scared the bejimmens out of me, being blown around like that. It was pleasant listening to the wind lull us to sleep though. Early morning we awoke to the roar of Harley's as they headed out for poker runs. We went in for the breakfast buffet, a bit of gambling and then out to see the bikes and vendors. They also had a classic car show at the same time, so it was a nice day. We headed for home about 2 and got home a little after 6. We ended up with extra sand in our pockets, certainly wasn't any money left!
Wade started a drug study, which I am pleased to say seems to be working extremely well for him. A new GERD medication in it's last phase of drug trials. One pill a day and no more problems (he has a hiatal hernia which causes .. pardon me caused him to have to sleep siting up) He has to go in for another endoscopy after four weeks, and they say that it could even heal the lesions on his esophagus and even the hiatal hernia in as little as 4 weeks -- wow! Now wouldn't that be wonderful! All I know is for the minimal side effects -- mild headache which a Tylenol stops -- he hasn't had any problems since day one of the study -- this is great stuff!!
Oh, we also celebrated our granddaughter Ashton's 7th birthday. YIKES! I'm getting old ... LOL
And I think we may be going back to North Carolina for Thanksgiving as Wade's Moms health seems to be in decline. We'll be taking the RV, so I hope to get to visit one of my CWPML and DASN friends in Oklahoma on our way.
Well, that's about got us back on track I think. So now I'll just have to get back into my journaling routine again. Thanks to all of you for your care and concern in personal notes to me, I do tend to hibernate when things get a bit shaky.. bad habit, old habit
October 10. 2000
Guess it is time to catch up again! My last entry was about the Memory Walk kickoff, and this is pretty much what has consumed my life these past weeks.This time of year is very special to me, as it is a time when I am generally asked to speak and present information about being an EOAD, the opportunities during the rest of the year are rather limited but now is a great time, really a blessing. It is also very hard on me physically and mentally........
I am greatly gratified at the warm reception I get when I speak, I am encouraged by the growing response to the Memory Walk. Participation in Orange County (So. Cal) this year was over 6,000 Walkers, plus hundreds of volunteers making it a terrific success under the wonderful guidance and direction of Amy Daughterty. (The Walk raised over $450,000!) I worked hard on our teams banner this year ... "Phamily & Phriends" Phorget - Me - Not ! (My last name is Phillips :)) At each end of the banner was a 'noodle', the long styrofoam swim toys, which I used as large 'phlower stems'. At the top were large 'phorget -me-not' phlowers. On the front and back I had pictures (where available) and the names, age, & age diagnosed of many of my Alz & Dementia phriends. One side of one phlower featured the names of those that have ended their Alz. D journey -- and were labeled as Unphorgettable Phorever Phriends. I also decorated a large golf umbrella as a garden andmade phlowers for each of my sponsors with their names and at the very top we fastened a 4'x2' poster of my favorite four generations family picture (it's on my photo page) and had a sign attached saying , ' 4 Generations! 2 Inherited Alzheimer's ...... Our sponsors helping to STOP the legacy.' We also all had matching visors with our team name, and our grandsons carried bubble guns ... The night before our children and their families spent the night, so we'd all be together. Our son & DIL were up with me till past 11pm putting the finishing touches on the umbrella. The kids were so excited it was after 10 before they finally all went to sleep, and 6AM came mighty early for us all! But somehow we managed to get a dozen of us up and gone by 6:45!
After we arrived at the Spectrum Wade and I left them to get the rest of our Walkers organized and T-shirts passed out as we had been invited to be at the VIP tent to meet with a congressman & the press ... I felt very awkward standing around so we went back to the team for our group photo ... they came and found me though and had me address the crowd just before the start of the race. I was very proud to be able to thank the 6,000 Walkers on behalf of the patients and families that would be benefiting from their support. It was a LONG 3 mile walk! About half of our group cut over at the 1 mile marker, the rest of us made it the 3 miles, although we did come in last! (Thank goodness it wasn't a race!!!) By the time we got back in all the food was gone, and most of the booths had folded. I think next year I just may become a participant in another team, cut over at the mile marker, that way I'll get to eat and join in the festivities and fun without the responsibility -- I get way too involved in this and exhaust myself. But it was worth it! Every year we get a little more press, more participants, more understanding and awareness. Oh, I forgot to mention we won the prize for the "Best Overall Theme"
Wade, Tina and I as co-captains of our 'Phriends & Phamily' Team for the Memory Walk attended a brunch today at the Crazy Horse along with about 300 others. Amy Daugherty of the Orange County Alz. Assoc. did an exceptional job of getting this all together. Very well orchestrated, everyone was graciously greeted, registered and fed.
Many long time sponsors, many new ones and of course the highlight of the day, the national Co-Chair for the Memory Walk, David Hyde-Pierce (Niles on Frasier) .... he is a a man with a genuine passion for the cause of curing Alz.D. He remembered me from last year and greeted me with a hug, and a kind word at being glad to be able to see me again. I had him sign my Memory Walk shirt with all the buttons, and gave him a button and told him abit about DASN and gave him one of our prototype cards. He really was in a rush, don't you know his filming schedule is hectic since he is in every scene now with all the intrigue of him and Daphne from last season, and he was leaving our brunch for a team captains luncheon in San Diego - - busy man. Much admired, very much appreciated.
October 19. 2000
Spent a wonderful afternoon with old neighbors and friends. Frank and Jane took us out to lunch, really very nice of them.They also gave me a check for $100. for sponsorship for the Memory Walk. Jane said she just had to deliver it in person because there was no way she was going to walk and was afraid to fill any of the paperwork out least anyone be confused.
There was a bit of concern about their visit though. Frank had a small mole on his wrist that turned out to be melanoma, further PET scan testing is showing signs of cancer in his spleen, and lower left quadrant. Very disconcerting to say the least. So if you have a prayer list, please include Frank - one of God's finer earthly creations.
October 18. 2000
Oh my goodness, it's Friday! And not a moment too soon. The weekend looks very inviting!October 17. 2000
Kept busy today catching up on laundry, and housework ... it really is futile I know ... the more I do the farther behind I get!I am excited that sponsorship and registrations for the Memory Walk have started coming in as of today. I have 10 registered to walk, that I will turn into the Team Captain's luncheon Sunday, and hopefully I will reach my personal goal of $1,000 in contributions and many more registered walkers before October 7th.
Got inspired during the patient chat this afternoon and evening, and worked on a submission to the DASN (Dementia Advocacy & Support Network) for a business card for our organization. We are officially a nonprofit group now! And so must move on with brochures, business cards, etc., - Our goal is to have them ready for the October Memory Walks so that we can hand them out. A logo has been chosen -- a turtle with angel wings -- this coming from a writing by Tim Brennan about Turtles & Rabbits, the turtles representing the patient with dementia. I have tried faxing it on to 'headquarters' but she too must have found inspiration (or someone in need of a listening heart) for the line never cleared. Oh, well I'll try again in the morning. It is nice to be in a positive mode!
October 16. 2000
Extremely hot day here in L.A. I was just a nervous mess all morning in anticipation of my Uncle's viewing this evening. It is over. All went well, many of my cousins came to say good-bye. My mother could not come. But my Uncle is at rest now, far
from the frustration and pain of his last 15 years. I will sleep well, my emotions have left me spent.October 4. 2000
I have to admit something here...this is REALLY not my idea. This is not the 'me' I used to be. This has been a day when circumstances, chance meetings, misunderstandings and harsh words have made it very difficult for me to listen to and respond to both sides of the Alzheimer's Road, and all the emotional baggage that it entails. I would prefer to ignore that I have Alzheimer's, and live my life thatway. But that is not to be. I have not always understood the path that God has chosen for me, heck I've even argued on my behalf the unfairness of things that have happened in my life. At the time I didn't, couldn't see the
why, but it really wasn't for me to know. Inthe end He has always proven to be right. And so it is with Alzheimer's. This is a blessing in my life, one which I am unable (no matter how hard I sometimes try) to ignore.August 15. 2000
Best Birthday wishes to my webmaster and friend Laura.Busy today trying to write something for my Uncle for tomorrow's viewing. I got one of his photos from before his stroke and had it blown up to an 8x10 to display, for that is the man we all remember in our hearts. I also had some wallet size made up for anyone that may want one. Think I've pretty much got it all under control now. Heard from a niece via another relative that received an e-mail from her that she wanted to know where and what was happening. I was going to ignore it, but ended up being rather blunt in my reply. I asked her why she would possibly be interested, she hasn't bothered in all these past 15+ years to see him (she lives locally) alive, why would she want to see his corpse? Gotta' say it really did feel good to speak my mind, usually I just skirt touchy issues, I am very non confrontational. But, you know all these years stifling my thoughts hurt no one but me - keeping the peace comes at a very high cost, and I've always been the peace keeper/maker. I am still at logger-heads with my step-dad, but I may just have to gracefully loose this fight for I have no control. He refuses to let my Mom attend the viewing (there will be no service per my Uncle's request)
She said she'd like to say good-bye, but he overrode her and told her they would just remember him the way he was, alive. So in the end he had her agreeing . . . I hope my Mom will be able to find closure, I don't know perhaps it is best, as she is slipping further into dementia ... I really don't know what is best so won't force the issue and pray it is the right decision and that things will settle down and he won't make it impossible for me to see her or talk with her.
August 14. 2000
Spent the better part of the day getting my packets together to send to prospective sponsors for the Memory Walk. I am really cutting it close! Although they can continue to gather sponsor dollars until the day of the Walk, October 7th here, if they are going to walk and qualify for the free T-Shirt I have to have in their registration fee before Sept. 2nd. So I haven't given them much time! I did get the majority mailed this afternoon though.We spent the afternoon at the lawyers going over our Trust again, making sure we have everything in place. I think we will have to redo the POA to make sure it includes psychiatric though. Of course when someone dies it always bring s legal matters to the forefront of our thoughts.
Got a most wonderful e-mail from Tim Brennan with kind words and understanding from an article he'd read in Perspectives. I have been trying to connect with Tim for some time as I am a great admirer and we have a mutual friend, Selly Jenny, the founder of Memories in The Making. So I sent him the links to all 'our' groups, Coping With Personal Memory Loss, Dementia Advocacy and Support Network, and the PRx chat. Look forward to getting to know him better.
August 13. 2000
Well, we took the papers over for my Mom to sign, step-dad was cordial and gave us no problems (I'm sure because Wade was with me). Mom and I went into the kitchen to sign all the documents. She didn't remember how to sign her name , so I wrote it out for her to follow which was okay except that .."Oh, that's not how I make my K's" then when we got to a page that needed a date she was okay when I told her 8 - 13 but when I said 2000 it was beyond her comprehension. So I tried twenty, with two zeros -- that worked okay but she was quite certain we'd messed it up And now I have to switch gears.... Memory Walk has just caught me by surprise...my perception of time passing stinks! I have to get out a letter to hopeful sponsors tomorrow -- deadline for early registration (i.e., free T-shirt included) is Sept. 5th so I am cutting it awfully close! And I am supposed to have at least 10 registered walkers for the team captain luncheon next Sunday the 20th with David Hyde-Pierce. Oh, well it will either happen or it won't, all I can do is what I can do.
August 12. 2000
I've been away too long, sometimes it is hard to deal with the realities of life. My Uncle passed away just after midnight on Saturday, today. Strange how things happen. He has been under hospice care just a short time now, but it has been evident that his time here with us was limited as his journey to the end progressed. My stepfather had called me on Monday to let me know that he & my Mom had visited with my Uncle earlier in the day and felt that the end was eminent. He told me that when my Uncle died he was going to just tell the NH to call the cemetery and be done with it. It would be just too much for my Mom, and besides he didn't want all the fuss of having to get his suit cleaned to wear to any funeral. I was stunned. It has been obvious since he married my Mom that he is very controlling, but this was just too much. He went on to say anyone that had wanted to see him had visited in the NH, why bother when he died, just waste of money which should go to my Mom for her care? Whoa! I got more than a little hot under the collar and said far too much about his greediness, refusal to let me see my
Mom, and the fact that he had cleaned out my Uncle's apartment, bank account and taken over everything when my Uncle was 1st hospitalized -- not for my Mom's benefit I assure you.Let me tell you it was more than a little disconcerting to see my then new step-dad of 2 years wearing my newly hospitalized Uncle's clothing. I had the paperwork on file in regard to my Uncle's prepaid burial arrangements and so made an appointment to meet with them to go over it so that I would know what my Uncle's wishes were, which is what I feel should be done. So instead of going over pre-burial wishes, Wade and I had to keep the appointment but change to need. We have all the paperwork completed, my Mom will need to sign them (as she is conservator -- instituted 14 years ago before Alz. D was diagnosed -- as I said she is in later stages now), and I have had to prepare for battle, and it just should not be this way. My step-dad said not to come over with the paper work till tomorrow afternoon, they are just too tired to deal with it today. It took me a bit to get him to let me talk with Mom on the phone, but she seems fine with her brother's passing -- she speaks of him in the past tense of who he was 15 years ago, not of the man in the NH. She understands and yet doesn't, she thanked me for being so kind as to call her as if I were a stranger offering condolences. His passing has been a kindness my Uncle prayed for. I will continue to miss the man he was not the man he became in these last years of his life. I hate the position my step-dad has me in, I must walk on egg shells around him or I can't see or talk with my Mom ......... she is powerless in her condition, and I would never knowingly do anything to make things worse for her. He is a greedy, controlling, heartless and cold man who has isolated my Mom from her family - She will tell you it is her husband, what choice does she have, this is what she has chosen. And until her condition worsens, and I can petition for her conservatorship, there is nothing I can do. And strange too when I opened my screen to do this entry a document was on the screen - Journey's End - a very sad but honest writing of what happens at the end of life - I haven't had that up on my screen since I shared it with a cousin so that he would understand what my Uncle was going through - that was well over 3 weeks ago, and for it to be up and on my screen, really gave me goosebumps And so till tomorrow.
August 3. 2000
This is the 216th day of the year, there are 150 left (don't forget you quick mathematicians it is leap year I met Tina and Ashton for lunch. Ashton has lost both of her front teeth now, she has always been so expressive in her speech it is comical to watch her talk as there is no 'stop' for her tongue with the missing teeth.
Tina really has her head together for someone under the stress she has. I admire her very much, she has really turned out to be a very insightful, caring and strong woman. I sure do miss them now that they have moved. But today was wonderful!
I got a call from Lynn Snyder in the afternoon, she is editor of a newsletter about Alzheimer's out of San Diego, CA. Kim Bailey of the Orange County Alz.Assoc. had submitted 'A Patients Perspective of Alzheimer's' based on the letter to Christine (see May 8 . 2000 entry) to her and she has chosen to publish it in her newsletter. I am honored. We talked for a bit, shared with her about Dementia Advocacy and Support Network and she is going to give it press space in her next issue (she thought she could squeeze it in this one but, there just wasn't enough space) -- an articulate, insightful and honest woman I really enjoyed our chat.
I have been remiss in not sharing my membership in another nationwide group -- Stitches From The Heart. It's membership consists of people that knit or crochet baby booties, caps and blankets for preemie babies in the neonatal intensive care units.
It's been a positive endeavor for me to do while I watch TV in the evening. If you are interested in joining, I will be happy to forward the information to you, just drop me a note!
August 2. 2000
Wade and I went to the kickoff luncheon for the Los Angeles (CA) chapter of the Alzheimer's Association. I wore my denim Walk shirt from last year decorated with all the badges I made and pins from previous year's Walks. I do love to get into the sprit of the fun of the Walk early! I was honored to be able to speak before the gathering. Shelly Fabares was there as National
Co-Chair of the Memory Walk. A new venue for them, Hollywood Park Race Track was where it was held. Very hot and muggy day, nonetheless it was a very excited and enthusiastic gathering. Memory Walks are always so much fun.Orange County will be having their Walk at the Irvine Spectrum. And I do believe that the DAS Network (Dementia Advocacy and Support Network) - the newly formed nonprofit organization that is by and for the dementia patient. - will be making their debut at the Heartland Memory Walk October 7th as well. When we left the Race Track we headed over to the Orange County Chapter to pick up some Walk brochures and a book from their library. I shared my badges with them there and gave out 5 in exchange for their sponsoring me for the Memory Walk --- Thank you Linda, Paula, Judy, Judith, and Amy! I'm proud to have you as my first official sponsors!!
August 1. 2000
Well, I didn't get just one response to Sharon's story, I got two! I want to thank Victor and Judy again for taking the time to go to the KFWB website to get the link here.We went to visit my uncle today in the nursing home. I t is sad to watch his continued decline.
I spent most of the day finishing up the buttons so that I can wear them on my Memory Walk shirt from last year to the luncheon tomorrow. And as a pre-event premier
For the patient with a sense of humor:And for the general group:
I Don't Have Dementia ....... I Suffer From "Wander-Lust"
I'm Living My Inheritance - Alzheimer's - Help Stop The Legacy
I Wander Where I Am
You Wonder Why I Wander ...... So Do I
Fronto Temporal Dementia ... FTD .... is NOT a Bed Of Roses
No, As A Matter Of Fact ..............ALZ Not Well
Join In The Latest FAD ...................Fight Alzheimer's Disease
Many Are Living Their Inheritance ... Alzheimer's .... Help Stop The Legacy
And of course they all had .... Support Memory Walk 2000 October 7th
July 31. 2000
What a nice ending for the month. Sharon Katchen, KFWB News 98 (radio) came by for our interview. I was able to share with her my website, news of the newly formed patients advocacy network,DASN, our online support group ... Coping With Personal Memory Loss (CWPML) and our daily chat at Planet PRx. I only was able to catch 2 of the interviews played on the radio (of course, it didn't sound a thing like me LOL!), both different - my, she is really an artist with her craft - I actually
came across as making a point to her questions and not just rambling. What made it all the nicer was that she gave the link to my home page through the station web site, and announced that at the end of our interview and also tagged that info onto another story they were doing about a Vioxx study at UCLA. It will be great to get just one person here to visit from that
interview! Sharon's personal connection with Alzheimer's is her late grandmother, who is now a listening, guiding angel when Sharon has an opportunity to help us all in our fight against Alzheimer's. I am most blessed that she pursued my story, thus allowing all Alzheimer patients to have just a bit more of a heard voice in our community.At the end of the interview she shared pictures of the triplets ... they are so precious! I look forward to seeing them at the Memory Walk October 7th.
And then I called the Orange County Alz. Assoc. to let them know that Sharon had been here -- great timing on my part! There was some space left on the newsletter coming out in September so Linda Scheck (the director) graciously is placing a short article about the new DAS Network and as well is going to promote CWPML and give the link to the site. I am so excited! This is really a validation by the O.C.A.A. for the patient and their needs. We talked about my presenting to their board as well at the next meeting in September ... now that would be a coup for us patients!
The buttons came out quite well ... we'll see how they go over at the Memory Walk luncheon Wednesday, as I hope to use them as donation incentives.
July 30. 2000
"The bravest thing you can do when you are not brave is to profess courage and act accordingly."-- Corra Harris"When all else fails, baffle 'em with bull *hit", at least that is what me Dad used to say. I usually say I'm really good at tap dancing. Whatever it is, what ever you call it, Alz has a way of making us all.. caregiver and patient alike ... find a way to maintain a normalcy to life (No matter how cock-eyed
Very busy today with preparations for the Memory Walk 2000, which will be in most cities on the 7th of October. I tried to find a badge maker, but was unsuccessful so I am going to put some of the slogans that I have come up with on pre cut wood, and attach pins. I got them made up on the computer -- hope they come out as good as I envision them for I hope to use them as fund raisers for my support for the Memory Walk. Now. really instead of this arts & crafts stuff I should be working on my letter to send out ... oh, well.. maybe tomorrow. (still the Queen of procrastination here!)
July 29. 2000
Sometimes poems just emerge, as this one did this morning. So as not to lose them I will transfer them here.They seem somehow to mirror the plight of my soul.
I ask politely,Nothing new today, rather melancholy over forgetting those important dates... and how to make gravy ! :( But I know it will pass, given a little space. I just need to try and not dwell on it though for then I begin to focus too much on my inadequacies which will help not one bit except to bring me further down. I need to refocus on what I can do to make a difference, and with my friends I think we will.
"Can you tell me where I've been?"
"You are lost!", says the small voice within.
A quizzical stare is the reply.
Then I ask,
"Do you know where I'm going, why?"
No, that is not right either.
Is my panic showing?
How do I make myself understood?
I do know they'd help me, if they could.
Hmmm.........Let me try and rephrase this,
let me begin again.
Do you know where I am going to,
and when?
July 28. 2000
Mundane morning ... cleaned out the bird aviary (dang, if those Love Birds aren't THE most destructive critters!), caught up on the laundry and finished cleaning out the RV.Sharon (the reporter), had to cancel at the last minute -- when you're a roving reporter gotta' go where the story of the moment is ... and believe me here in the L.A. basin we do have more than our share of (heart) breaking stories. Wade's Aunt and cousin also were a no show.
Had a lot of good discussion in the chat room about ideas for the upcoming Memory Walk and DASN (Dementia Advocacy and Support Network). A number of our group will be meeting in KS to join in the Heartland Memory Walk, and officially launch the DAS Network. I would really love to be there with them and meet my friends face to face, but that would really be so disloyal to the friends and family that come out every year in support of me at the local Memory Walk.
Well, I have lost more of me. I didn't realize till I was looking at the calendar that I had forgotten Wade's mother's birthday -- it was Tuesday. I am the one that ALWAYS remembers birthdays. I had forgotten Father's Day too (my step-dad was really hurt) and now the more I dwell on this and look at the calendar, I have forgotten our Anniversary.........it was the 19th, 33 years ... how sad. Now I wonder what other parts of me have been waylaid on this journey through Alz. -- little things like remembering special occasions that were important to me, that were part of the me that was.
July 27. 2000
Well, my fall caught up with me, my head and upper back kept me tossing and turning all last night, and today I'm not much better off. Strange how the day after is worse. Oh well .. a little time, a little Ben-Gay, and a few Tylenol and I should be good
as new.Sounds like DASN (Dementia Advocacy and Support Network) is becoming a reality. I am so amazed with the abilities to formulate and come together on this project via the Internet. Many of us have ideas as to what and how this group could and should represent the dementia patients, but to take all these bits and pieces of ideas and be able to articulate them into a proposal -
Wow!! we have some really terrifically talented people. May be that our membership is suffering from dementia, but somehow we are seemingly able to compensate for each others deficits.
Sharon Katchen, KFWB News called yesterday, she's coming out today to do an interview about my website. How this will play on the radio I have no idea! But, I am glad for her company, she is a very sweet lady. I think I wrote about her before? She is the proud mother of triplets ( 6 months yesterday :)) that I met at the Memory Walk 2 years ago. Last year she stayed home because of her pregnancy. This year she will be the hit of the Orange County Memory Walk with the triplets!!
Got my invitation to the Team captain luncheon for the Memory Walk in Los Angeles. They have changed the venue this year, instead of the zoo it will be held the Hollywood Race Track. Shelly Fabares will be the featured speaker.
Oh, and special thanks to my friend Ann Karin from Norway, always there with a kind and supporting word of encouragement not to mention that she takes the time to vote for my site daily!!! Thanks, I do value our new friendship! If you'd like to meet her here is her link AnnKarinsfairyHomepage
July 26. 2000
Home!!! Wow was it ever hot at the River! 115 in the shade! Me and the puppies didn't do too well. Even the air conditioner in the RV didn't have a chance ... the best it could seem to do was about 20 degrees cooler than outside during the day. Nights it was able to do a better job, but we still kept it cranked up on high all night. The casino was not in walking distance as promoted, rather in driving or swimming distance since it was across the river downstream about 3 miles. We did go over there
for lunch yesterday since we had to go into town and pick up a couple new tires. (We blew the left inside tire on our way out.)Very nice casino...inside water park too, but we just had lunch and left, even though the generator was running w/ the air on we didn't want to leave the pups for too long. Looks like we had Roo 'fixed' just in the nick of time, DD came into season.
Poor thing we thought it was the heat, she'd just sit there and whine and want to be held. The RV park was really nice, just more for the younger crowd with water toys. I did one of those prat falls you only see on TV ... took the pups down to the boat launch for a swim when I stepped in some slime and my feet just went out from under me ... flew in the air and landed on my shoulders lower back and back of my head .. more embarrassed than anything, I'm a bit sore but no worse for the wear. At least the back side of me was cool!!!
Glad to be home, gotta catch up on my mail.
July 22. 2000
Hot and muggy here today in L.A. We went to a wedding this afternoon. Very whimsical Irish Catholic priest officiating. I was so pleased that I was able to attend and sit through about an hour of the reception. I did have to go outside twice for a breath of
fresh air and a bit of quiet, but was able to 'behave' ... no unexpected crying, darting for the door, or covering of my ears As the party and the loudness of the music picked up we said an early good night. But it was a nice time, not scary like the last event of this sort. Guess I am learning to anticipate better, and find ways to cope.
We are leaving for the Colorado River in the morning. We are going to stay at Parker Dam for 3 days. It is supposed to be a very nice RV resort right on the River with an adjacent casino. With the temperature of 115 today when we checked, you can probably expect to find me either sitting in the river all day or in the casino. We are taking a few short trips to see how the pups are going to do, and what is best for them and us as far as sleeping,etc. goes before we take our long trip in September to Montana. Although that may be changed to a trip to Kansas City in October instead.
So till Wednesday.... Keep The Faith!
July 21. 2000
Lazy day around here .... nice! :)The PRx chat was busy today -- seems things are really underway for us to have our own nonprofit support group. Tentatively named 'Dementia Advocacy and Support Network' it will be the building block and stepping stone toward making the dementia patient heard. Our leadership is strong in Laura, she is making the things the rest of us have just talked and dreamed about a reality. She is also the founder of the Coping With Personal Memory Loss message board (the only one that I know of exclusively for dementia patients) and the Care Giver's Army board (an advocacy group for more $$$ from the government for the Alz. cause)
CAREGIVERS ARMYŠ HOME PAGE
Changes are sometimes hard to accept, I know for a fact that many people are having a very hard time with this new 1st generation of Aricept users ... we are not taking the predictable path into the oblivion of Alzheimer's dementia ... many are unprepared to deal with a dementia patient with an opinion or asking for a supporting hand.
July 20. 2000
I have found yet another quote!:Sharing a burdened heart with another who has the wisdom, strength, and knowledge to carry it, frees us from its weight long enough to focus on solutions.This is so true with the community of caregivers on the Internet, sharing their joys and triumphs, no matter how small or large on the message boards and in the chat rooms. Somehow just getting it out, sharing, gives it all a new perspective -- clarifies the muddle. And without a doubt a solution will arise, for their are many caring souls who will share, who do understand.
- Liane Cordes
Alzheimer's is an individual journey, as is each patient and situation, and yet there is the common bond. Our attitudes are adjusted, our vision clarified, our hearts lightened by the genuine and supportive word from our unseen friends.
July 19. 2000
Ashton spent most of the day in the pool today with one of her friends from the school that she used to attend. Another Burger King kids lunch with toy, Pokemon reigns supreme...forget the food! LOLAn old friend dropped by today. This was my 'best' friend pre Alz. D. Except for a few brief phone conversations I have not seen her since I shared my diagnosis, so I felt apprehensive and cautious with her visit. Her health is now failing, diabetes, and lung problems, and she has been home on complete disability for over a year, and yet this is the first I have heard from her in year and a half. I am not sure what to make of her visit ... guess time will tell.
And another dear friend from the past wrote me a letter. I was so excited to make a connection with her again as we were together in support soon after we were diagnosed. What she wrote in part saddened my heart. Her story is so important to share, to understand the loneliness many are suffering. She wrote in part:
"I've stopped telling anyone about my problem. I even deny it exists to people who know -- like my son and relatives. They can't grasp the concept. I'm living a relatively normal life and yet I have a problem with early AD. Everyday requires considerable management skills to maneuver life, stay active and get through without any major AD slip-ups people will notice. It's okay though because it's kind of a game or challenge. Since I'm basically alone I have room for a lot of leeway. Yesterday I was driving downtown**** and I got lost. A half day later I found my way home. I had fun, and no one knew. DR's and other professionals are the worst. It's because they discount what I say, that I never tell anyone. It just makes life easier."This is a single friend who is facing the future and it's complications with Alz. D alone I admire her courage and penache, especially when she wrote that she is learning a foreign language, and mastering it! She's amazed herself with this accomplishment since the doctors who diagnosed her said she would she would NEVER be able to learn another language, and told her to stick with things she already knew how to do.
How can there not be any type of support and understanding available for people like my friend who has to live in denial, loneliness and fear of her future just to survive? It just validates again the discussion in the chat room tonight with my peers of the need for our own organization, to give a vociferous voice to the patients plight ... we must attend to the needs of our present status as well look to the future with concessions made for home health care and day services.
July 18. 2000
Hot day here today, which made granddaughter Ashton quite happy as she spent most of the day in the pool -- many more days like today and she'll start sprouting gills! We also made a trip to the children's museum... I think our favorite was the human kaleidoscope room.With the leadership of Laura in the PRx chatroom, I think we as a patient group might be on the way to a true organization of patients. This is a really good thing!
Got a brief message from Joe & Penny (Joe's Quest), at the conclusion of the conference, Joe apparently jumped up onto the stage and gave his card to the closing speaker. His reason?.... " So that he knows that I, AM - I think he made his point
July 17. 2000
Tina and Jake headed for home this morning, I always enjoy my time with my daughter. Ashton is going to stay with us till Thursday. (She'll be waterlogged for sure by then ... can't keep the little fish out of the pool!We had a good group and a good discussion in the PRx chatroom this evening. We discussed our frustrations with nonsupport in general for our growing population of Alzheimer's patients and what we could do to make a more positive impact on the populace.
Locally here in So. Cal. the larger counties of Los Angeles and Orange have nothing to offer in the way of support for the patient (and mind you this is where the nations spokespeople for Alz. reside), and yet a smaller county to the south, San Diego has a model program ... go figure. Maybe it is the politics and money that have them so mired down that they have forgotten their mission statement. I do know that with the advent of these new drugs, and the emphasis on early diagnosis, that our population will increase, as will the demand for more support.
I think that we now have a very strong base forming in our chat room, mostly members of the CWPML board, that will get an organized proposal together. I personally, would like to see a delegation of sorts meet with the National Board of Directors in Chicago and present them with such a proposal. Well, hey! everyone's entitled to dream!
July 15/16. 2000
Tina and the kids arrived late in the afternoon Saturday -- swimming in the afternoon and pizza for dinner! Sunday morning's breakfast was just as bad... Tina and I had strawberry Sunday's for breakfast and the kids had 'happy face' pancakes with whipped cream and chocolate chips! It's fun to break the rules of sensibility some times. It nice to not have to worry about husbands and MIL's July 14. 2000
Wade was up and off early today, he is on his way to Ensenada, Mexico on a Harley run with his friends. You'd think I'd make better use of my time, but actually I was just a bit lost and didn't know quite what to do with myself today. As if this house
isn't enough of a mess, I decided to strip the wallpaper off in the guest bathroom..... well, that should keep me busy and involved. I am hoping that Tina and the kids will come up for a swim and a visit tomorrow.Had a wonderful reunion of sorts in the Planet PRx Alz. D chat room this evening. Laura was back as our hostess. She has been off on holiday for this past week at a special family gathering in Canada for her Mum's 80th birthday. I have really missed her, as she is also my IM buddy and my webmaster too! As a matter of fact she is so entwined in so many lives out here in support of us in one way or another that the folks that didn't know she had gone on holiday were sending out wanted posters and smoke signals on the Internet ...LOL -- Welcome home Laura! You think your animals missed their nourishment and are skinny...you should see our souls.
I got another picture in the e-mail from Joe & Penny ... it was with them and David Hyde-Pierce (Niles on Frasier). For those of you who have not had an opportunity to meet him, he is one of the most kind, sincere and genuine men that I have had the pleasure of meeting. His Father and Grandfather passed with AD, and he is a most ardent supporter of the Alz. D cause, and gives of his time very generously. He is National Co-Chair (w/ Shelly Fabares) of the Memory Walk and has testified most eloquently before congress on behalf of Alz. D. This is not a man enamored with his star status but a man impassioned with a cause. He is quite approachable, and I hope you all get the chance to know him as I have.
July 13. 2000
I was lucky enough to connect with Morris in the patient chat room. He is in Washington, DC at the Alzheimer's 2000 World Conference (yes, you do detect a note of envy Wait, I just got a E-mail with the picture of Morris persentation.Wow! That is terrific! I really did get to go to the conference! I am SO excited ... don't know what I expected when he talked about it in the chat room, certainly not this. He has added a number of patient 'Home Pages' displayed on his presentation board and mine is among them! I am so flattered and glad that 'I' was in attendance at the conference! His presentation on patient Rehabilitation has gone so well that they have asked him to stay over for the Caregiver portion of the conference. Also heard from Joe & Penny again today, gosh they are really making some great connections for there proposed book and for speaking engagements... Wow! This may just be our year after all, when the country finally sits up and takes notice and helps put an end to Alzheimer's!
Dang, my guest counter is on the fritz again :( was on it's way past 70 (after the first crash) and now its down again to 7...You know what that means? Guess you'll all have to sign my guestbook so as I can keep track!!
July 11. 2000
One of the things that occurred last week was that the counter went down on my site ... from just at 2200 to 7 when I checked it! Strange, I didn't realize how much those numbers meant too me! Silly I know. Well the counter is picking up numbers again, but it will be a while before I see 2000 again.... sighAlso all the information that I located on the Internet for a 'new friend' whose wife was in the later stages of AD, came in mighty handy for me as well. It really is strange sometimes how things work out. Just the day after I was able to locate a really good hospice site, I needed the information myself since they placed my uncle under hospice care. (He has been in a NH for 15 years the result of a stroke.) He had to have a colonoscopy about a month ago and has been in decline since then.
I am still working on getting up to date with my letter writing ... not one of my better abilities I'm afraid. I don't do to bad at keeping up if there is something that I can be responsive to, but initiating a topic or subject is difficult, I seem to be more reactive these days.
We took our little cocker-poo Roo in today for 'gender reorientation' (i.e., we had him neutered). We were afraid if we waited too much longer DD (our dachshund) would come into season, and we are not ready for any little Dachser-Poos at this time. We might have her breed after she's a year, but we will wait on that decision. I think Wade would like to try and recoup some of her cost (over $900) as she is a registered AKA Hound. I just like puppies! ... but we certainly didn't think mixing the breeds would be safe. DD is lost without her 'boy toy' today, and is wandering the yard crying ... she really is pitiful ... boy, I can't imagine the ruckus she will raise when he comes home and they will have to be apart while he recoups for at least a day.
July 10. 2000
Took me about an hour to download the necessary program, but I am ready to catch the Alz.2000 live broadcast in the morning ...5:30 AM our time! But I am looking forward to hearing Dr. Cotman's address. This is really exciting getting to at least hear some of the speakers.I heard from Joe & Penny ( Joe's Quest) and they were interviewed by the local Cox news station, it sounds like it may be showing across the country so keep a look out!
We've got company this evening for the night. Our son Jeff, his wife Windy and our two grandchildren Brandon and Madelyn. They will be heading back home to Laughlin (about 4 hours away) in the morning.
July 9. 2000
I received a phone call this morning from my grandson that has left me with a smile every time I think of it. He doesn't usually have privileges to use the phone as he is only 4. But, today when he asked if he could call someone his Mom said okay. I got lucky and Tina pushed the speed dial of our number. Jake was so tickled at getting to make a phone call that when I picked up all he could do was laugh. Of course I recognized that laugh right away and asked if this was the hug-a-bug calling, this only increased his laughter so I told him guess I was wrong it must be the tickle-bug, which made the giggles even sillier when he finally stopped he said that I must have forgot him. I said oh, no I knew that it was him making a joke. Nothing major just a little boy whose silly giggles have stayed in my thoughts all day..bringing a smile to my face direct from my heart.July 7. 2000
This was sent to me by my SIL, I really like what the words have to say and want to share them with everyone:The Strength of a ManMy husband, Wade is just not the romantic type at all -- practical, realistic and for the sake of avoiding an argument I'm sure, would only agree that this is how a woman would like to perceive a man. Actually these men from Mars don't realize how very simple it is to make a woman feel happy, secure and loved.
The strength of a man isn't seen in the width of his shoulders.
It's seen in the width of his arms that circle you.
The strength of a man isn't in the deep tone of his voice.
It's in the gentle words he whispers.
The strength of a man isn't how many buddies he has.
It's how good a buddy he is with his kids.
The strength of a man isn't in how respected he is at work.
It's in how respected he is at home.
The strength of a man isn't in how hard he hits.
It's in how tender he touches.
The strength of a man isn't in the hair on his chest.
It's in his Heart...that lies within his chest.
The strength of a man isn't how many women he's loved.
It's in how he can be true to one woman.
The strength of a man isn't in the weight he can lift.
It's in the burdens he can carry.
Tuesday, July 4th, the 186 day of 2000. There are 180 days left in the year.
This is Independence Day.Wade and I are still recouping and regrouping. It is nice that we are really get back on track with one another..the last 5 years have been rough on us both. Our company finally was able to get a flight out on the 2nd as they had missed their first flight. The airports looked more like Christmas than the 4th of July weekend.. who would have ever guessed that! The airlines gave away their seats a half hour before flight time and we just missed it by five minutes so we brought them back home and back again to the airport the next day to wait for a standby flight. Luckily, even though they had to split up they were able to get out on the next two flights. Unfortunately I can't report that any of the balance of their visit went any better than the beginning. I had at least one other incidence of uncontrollable crying, which of course it made everyone uncomfortable. I would like to place the anger and frustration on those around me for just not understanding and pushing me to do and be things that I am no longer capable of, but ultimately it is in reality no ones problem but my own and my inability to explain, to keep on trying through 'auto pilot', when I should have given up long before. I just feel so vulnerable and therefore tend to try and have my defenses and pretenses up and on guard. Gosh you don't have to even throw a stone at my defensive wall to have it come crumbling down -- just marshmallow will do!
But the one nice thing about having Alzheimer's Disease, is that given space and time the particulars fade easily from the mind and you just go on with the days to come.
My Journal (January thru June 1999)
