To My Journal (Jan - June 2001)

Can you tell me a bit about your treatment?

Presently I am taking (daily) 10 mg of Aricept, 2000 IU vitamin E, 2000 vitamin C, multivitamin, antioxidant, 200 mg Welbutrin, and Vioxx (I do not know the dosage here as this is a clinical drug study) -- when not on this study I also took 800 mg ibuprofen.

The doctors offer nothing else, other than to enjoy life while I still can.

When I took this fatalistic advice to heart I was most depressed and angry. As of last year, after connecting with my peers on the Internet, I have taken a much more proactive approach to life, working on a self rehabilitation program in which the Internet has played a major role. If the medical community can work to rehabilitate people who have suffered a stroke or brain injury and been successful then why not the person with dementia?!

What has been your experience with nurses?

The nurses that I have had the most contact with were/are working in the clinical drug trails. I have been extremely blessed to have had nurses in the drug trials and at the University where my progress is reevaluated yearly that are sincere in their care and knowledgeable in the unique field of dementia. This is the without a doubt one of the most important positions in the PWD's (person with dementia) treatment. Initially when you go in to seek a diagnosis the things that have been occurring in your life sound so foolish to voice a concern to a stranger who might ridicule, discount and fluff off as others have done -- These concerns are extremely serious, they have brought you to a point where you are willing to risk your self-esteem, put your pride in your back pocket in hopes of finding an answer to your worries.

Have you any recommendations for nurses in general, or nursing students?

Remember YOU are the first impression made on a patient. It is how you handle the patient that will set the tone for the visit. No matter what the reason, most people are 'uptight' at a visit to the doctor. It is especially important in the subsequent evaluation of a person for possible dementia that they feel at ease and safe. They are divulging what has become a living nightmare of worry for them, in trying to share their concerns with others they have probably been given glib reasons, and their fears discounted. LISTEN, empathize, show importance and sincere concern for what the patient is saying. Make them feel confident in your concern, that it is genuine. And if possible that they are your priority not the clock.

What do you consider to be the most valuable thing, or things, you have learned through your experience?

The heart without hope is a lost soul that causes the spirit to wither and die. When strengths are brought to the forefront and weaknesses ignored and cast aside, many pieces can become a strong whole and change the perception of a living death.

), the continual learning that occurs as I use search engines, access and participate in chat rooms and support groups, IM friends, meet new people and play games.

Most importantly the connection with my peers - I am no longer isolated, I am able to share, compare, console, support and be supported. Fears are conquered, skills are mastered, knowledge is garnered, ideas and concepts are discussed (and sometimes cussed ), plans of action for advocacy of the PWD are set in motion. triumphs and failures are shared, extolled and consoled all from within my own safe haven. I am connected to friends whom I've never met, who share the same concerns, fears and unanswered questions about this journey through Alz. I think what I like the best though is the connection I have with people who read and respond to this journal, other PWD (people with dementia), caregivers, students and people who are concerned that they too might be joining this journey, take the time to comment and share kind words of support or ask a question -- it's always gratifying when I am able to offer them the information they seek. And especially nice when they sign my guest book and I am able to reread their comments again, and find strength in their positive words of encouragement.


March 20 . 2001

It's the 79th day of the year, only 286 days left!

We've got a vacancy, so painted most of the day. I am still trying to get caught up on my correspondence, I get myself in a bind here -- some letters I am able to get off a quick reply without a problem, others need more attention, thought and time so I put them off for a later time when I can give them the attention they need -- problem is I forget about them later :( and they get forgotten till many times the point is moot. sigh.....

This is the response I sent off today to the Canadian researcher in regard to living with EOAD - this was way overdue, and now because of time restraints am not giving it the attention it deserves, but, today this is my best...

Life is really rather surreal, at home away from the 'real' world, my early stage symptoms can be pretty much ignored as with watching a child grow within your presence you adjust without even realizing it to the daily changes taking place. It is only when I get out within the 'real' world that my limitations become very evident. I become fearful in crowds, panicked. In social situations, although I may appear to be listening to a conversation, somehow I blank out after a short time and am unable to comprehend the words.

At a restaurant, not always, but sometimes the choices are overwhelming -- I am not good at making a decision. I'm not ill enough for it to be outwardly apparent, in my appearance or manor and yet I know that I could not hold a job with any confidence. Rather a limbo state of affairs -- I can still cook and yet without a doubt can be distracted to water the flowers, feed the cat or do something I see needs taking care of and completely forget that I have anything on the stove. I've become even more cluttered and disorganized and unable to prioritize. I can no longer seem to effectively get done all that needs doing -- and the weird thing is that I am aware, and yet still unable to pull it together. I find confidence in the support of my peers and yet even here I am unable to follow through dependably. I seem to best at responding rather than initiating, at providing ideas and inspiration as opposed to actually doing them myself -- not that I don't want to, somehow I just seem incapable of a follow thru. SIGH ... this is frustrating! People around me also are now unsure of their role, when you have a disease you are supposed to either get better (Then they can all cheer) or get progressively worse and die (and they can properly give you care and mourn). Everyone is poised for some type of action, and there is nothing to do for them, they are unsure of how to support this leaky boat which will eventually sink but for the moment is caught on a sandbar.


March 19 . 2001

I think I wrote that I got my glasses back on Wednesday. Well, for the entire weekend I struggled with them, I figured that having to wear my reading glasses for the week had permanently messed up my eyes, or maybe they got the prescription wrong - I was very frustrated since everything at a distance was still so blurred . . . DUH!!! I was wearing my reading glasses all weekend, I found my other glasses this morning on my computer desk.

Now, I just hope Wade doesn't remember how insistent I was on going to the eye doc today. Sure makes a difference when you are wearing the right glasses!!! Do I ever feel stupid!

Had a message waiting for me that I am invited to address the local Alz. Ass board on Thursday, I will be asking them to consider having a patient liaison on the board, preferably someone with dementia. So guess I'll have to work on my speech!


March 19 . 2001

We had a most delightful weekend. We were camped right next to the water so Ashton spent a lot of time fishing --- I take that back she spent a lot of time perfecting her casting and reeling in techniques! Nary a fish to be had. We have twin beds in our RV and on the first night I had both dogs and Ashton in bed with me -- just a little snug Subsequently I waited until Ashton fell asleep on the couch before turning in. She spent a considerable amount of time in the pool, evenings we all enjoyed playing bingo and dominoes. The highlight of the weekend was spotting Santa Claus in the dining room with us on St. Patrick's Day. The magic that man brings to a little girl is priceless. When she first spotted him she almost couldn't contain herself. I told her that he was probably here on vacation just like us. We decided to walk over and introduce ourselves -- what a great man, -- she walked up to him and he held out his hand, smiled and said,"Yes, it's really me" and gave her a bag of Jelly Belly's with a sticker attached with his picture and website itssanta.com Home Page so you can see for yourself! LOL As I said the magic of Santa, and the belief and joy of a child was such a priceless gift.

We dropped Ashton off at a birthday party on our way home,needless to say I'm not real enthused about cleaning out the RV and all the cleaning and laundry -- guess it's time to pay the piper!


March 14 . 2001

Found some great hats today which I mailed off to my SIL and her daughter. They were pale yellow and had "Grits" embroidered in dark blue, the G formed a hat for a ladies face. The Grits stands for "Girls Raised In The South" (they live in NC) - I hope they'll like them as much as I do!

Also I mailed off 31 more baby hats and a blanket for my "Stitches From The Heart" group. Seems to be the only volunteer type work I can do with any regularity.

Ashton got here about two, to spend the weekend with us. We are going camping with my cousins Elks group. We are looking forward to some relaxing fun. Got the puppies washed, clothes and food loaded, and we are ready to go in the morning. So I'll be back on Sunday -- hope you all have a terrific weekend!


March 13 . 2001

Spoke with Sara from the Oxygen network to see if perhaps she could give me some direction to get a film crew up to Montana in June. It all started out with Alice saying that she was going to Laura's, then Laura casually mentioning we should come too . . . I don't think she expected the response that she is getting. Looks like maybe a dozen on the DASN group are going to converge on Montana for our 1st annual meeting! I told Sara about our letters to Oprah, and our hopes of appearing on the show to garner attention for PWD, and perhaps even our storming of the National Alz. Ass offices across from the hotel their in Chicago so that they could see DASN is a strong advocacy for PWD. She offered to put the DASN info on their website befearless on oxygen! It's a start! And we have a dialog started, who knows we may sneak in the back door!!


March 10/11/12 . 2001

Well, these days went by in a blur! We had a very nice visit with Jake and was sad to see him go home. After breakfast at the airport Wade came home to the playoff games - March Madness don't you know! I am still having a very hard time without my glasses. I just have my reading glasses to use till the new lenses come in -- everything beyond 20 feet is blurry -- when we go in the car I have to look down in my lap or struggle with the nasty headaches this is causing. Even TV viewing, if I want to watch I have to sit on the floor right in front of the set -- this is not fun!


March 9 . 2001

Weather is cold outside so Jake spent the day playing card games with me. We also made banana nut muffins. I have started correspondence with a college student, he is gathering info on Alz. D. I am finding it hard going back to the hurtful, scared, unknowing beginnings of my journey through Alz. Lots of old emotions stirred up, though I feel I have the situation well in hand now, then I my anger and frustration had no positive outlets -- very negative days.


March 8 . 2001

Jake came today to stay with us until Saturday. Tina's neighbor's folks live just over the hill from us so she brought him up. We went over to some very dear friends house for lunch. Jake got to see their tortoise, he is still in hibernation in the hall closet. We gave it to them about 25 years ago, the kids had found him wandering near the RR tracks by our old home, we couldn't keep him because he kept escaping.


March 7 . 2001

Went to a gathering at UCI today, a send off for Liz the one 'who ran the show' at the Brain Institute where I go. She was like my anchor there, I trusted her above any one else, I will miss her greatly here. But she is not lost to me, they have created a position for her at the O. C. Alz. Ass and so we will still be in contact. Had an opportunity to network with the rep from Novartis (Excelon), very knowledgeable lady. Gave her info about DASN, and we brainstormed some about what the drug company might have to offer the patient -- they are still geared to the CG. Also had an opportunity to speak with the psychologists there, they are interested in what we are doing. As well spoke with the social worker for the Alz. Ass that works with the Early Stage group there, she is very excited about supporting our efforts to get Audry units. I need to get it coordinated when we can get together for a demo. The director of the Alz. Ass said that she hoped I would be able to make a brief presentation to the board on the 26th - It's on my calendar! She also said that the Audry units were doable! Now, I just need them to commit to a date for the demo!


March 5 . 2001

Well no rain as yet :) Woke up to beautiful blue skies with white puffy clouds but by late afternoon it had turned dark -- guess it is on it's way?

Checked with LearningCo about my Logical Journey of the Zoombini's order --Hmmmmm when I ordered on Valentine's Day there were plenty in stock, but now that they have my credit card number I find it is backordered until who knows when ... my first experience with Internet ordering is not proving to be a very good one.

Went to the Optometrist, I am still having problems with the bifocals. Haven't had one of my anxiety attacks in a while, guess I was overdue -- when he said that he would have to take my glasses back I just panicked and started crying -- how embarrassing! Well, I have the glasses he made for use with the computer so I am not entirely blind, just don't ask me see anything farther than 50 feet away! LOL Hopefully they will have them back to me next week, they have to make new lenses. I sure feel stupid :(

Our DASN group is busy writing letters to Oprah in hopes that she will give some show time to Alzheimer's Disease. Think I'll just add mine here to my journal for safe keeping -


March 2001

Dear Oprah:

I would really like to see your show cover the topic of Early Onset Alzheimer's Disease, which shows no favoritism in who it affects. It is a very timely topic, especially in light of the new medications giving hope that are currently available for those diagnosed early in the disease (which have little or no effect if started too far along in the diseases progression). With this new 'Aricept Generation," we are taking a positive approach to our diagnosis. As yet there has still been no cure found for this disease that robs of oneself on a daily basis, to a certain death. As with any catastrophic disease facts and statistics are enlightening:

- One out of every two families has a member afflicted with Alzheimer's Disease or some other cause of dementia.
- The annual cost of Alzheimer's Disease is over $100 billion.
- Alzheimer's Disease can begin up to 30 years before the first symptom appears.
and on and on ....

When given my diagnosis of EOAD (Early Onset Alzheimer's Disease) over 5 years ago at age 45, for all intents and purposes I was handed the nails to my coffin. There was no hope given, no support groups, no early stage patient services, only support for the caregiver and patient in the later stages needing day care and placement. But up from the ashes, as is said -- lo and behold little by little fellow PWD (People With Dementia), that were also on this journey to Alz found each other on the Internet. We have banded together to form self-help groups, daily chat meetings and a nonprofit group called Dementia Advocacy and Support Network (DASN). Our membership is International
- USA, Canada, UK and Australia. We believe we can make a difference, we have within our own group found hope, positive reinforcement and proof that this disease can be forestalled. We look to work hand in hand with the Alzheimer's Associations and Societies worldwide in provide services directed at the newly diagnosed and early stage patient.

As I said this is a timely issue, research is currently working on a vaccine -- a true hope for our Nation as a whole since predictions are that with the baby boomers aging this disease will increase from affecting 4 million last year to affecting 14 million in 5 years.

March 4 . 2001

Wade & I had our weekly breakfast at the Airport. Jeff, Windy and the kids came over in the afternoon and joined us for dinner. We watched the season opener for the Serpranos.

We are as ready as we can be here for the storm that they are predicting to come in and dump 6 inches of rain in the next two days. For us here is So.Calif. that is almost half our usual amount of rainfall -- so it should be a real doozy!

Roo is about back to his normal self, his one poodle cut leg is really silly looking though! Jeff suggested that we cut the rest of his legs to match - don't think Wade wants his dog looking anymore 'sissified' LOL


March 3 . 2001

Picked up Roo first thing this morning from the vet, he is just fine! They said he never showed any signs of poisoning, and probably had not ingested enough. Thank God. Nonetheless the poor little guy is quite pitiful looking, his eyes are bloodshot from the medication, one leg is shaved for the IV (looks like a poodle cut with the little bootie at the bottom). I had to give him a bath when we got home -- my goodness, did he ever smell foul!! He has slept most of the day, and tonight seems pretty much back to his old self. SIGH . . . this is my first real encounter with a vet -- always before just shots, spay or neutering, now I know what people are talking about with vet bills -- $312 ! There goes my little luxuries for a few months, but he is worth every penny!


March 2 . 2001

Well, we successfully managed to get to the afternoon without doing too much of anything. A great chunk of time was used taking the trailer down to where we bought it, Wade thinks it might have a bent axle because of the tire wear, and he wants to make sure it is all taken care of before we take any long trips.

In the afternoon we decided to cut up the scrap lumber before the rain moves back in so that we'll have fire wood and clean up our mess at the same time. Now this is where all heck breaks loose! Wade found a rat in the shed the other day and had laid out some rat bait there in the locked shed. When getting the wood from the corner for cutting our dog DD went ballistic -- she had spotted something -- wasn't long before the frightened critter scurried away from the dog and into the shed - Wade, not thinking, opened the shed DD went after the rat and sadly our Roo scooped up a bit of the rat bait. We took him immediately to the vet -- who didn't read the package I had brought in correctly and gave him a shot of vitamin K, sent Us over to the pharmacy to get pills for Roo. His assistant ran us down in the Pharmacy and said he'd been mistaken and that we needed to rush Roo over to an emergency hospital, which we did -- now mind you Roo seems fine as can be and is happy as a clam to be going for a ride, although was not too happy about being in the vets -- at the emergency hospital we were told that it will probably cost between $900 and $1500 to take care of him!!! Holie Molie!! After talking to the vet the estimate was revised to $300 -- which I had to pay up front -- he is to have vomiting induced, given a fast acting laxative, etc., Poor little guy, he seems to still feel fine and can't figure out just what is happening to him. He'll stay the night. Don't think I'll be getting much sleep tonight.


March 1 . 2001

Had a note in my mailbox this morning to go check out the Caregiving board that I was a part of for some time. It was heartening to read that although friends LO's continue to decline, the support, love and caring is still very intact in this close group of caregiver's that has become very good friends as well. And lo and behold, I'll be darned if there weren't many good wishes and "Happy Birthdays" posted for me in the hopes that I'd be lurking . . .LOL My sincere thanks to one and all to the Caregiver's Support for The Elderly board. Indeed a very nice surprise! If you are a caregiver in search of a very emotionally supportive board here is the link for you Caregivers' Support for the Elderly - tell 'em Mina sent you !

Finally connected with the local salesman for the Audry Internet connection. He has brochures in the mail and is willing to demo for the Alz Ass - this would be such a huge step forward for the Dementia Advocacy Support Network and for early stage patients that it will benefit directly. I'm encouraged :)


February 28 . 2001

Spent the entire day confused that this was the first of March. We did some grocery shopping just to get out of the house, I'm afraid that Wade has had his fill of the rain and is eager to get back on his Harley. We made plans to go camping later this month with the Elks club, our cousin is going to be 'wagon master' - Should be fun, we had a good time last time we went with them.


February 27 . 2001

Had my appointment today with PRI, for a continued follow up for the Vioxx study. I think they said it will run into May before completion. Dr. Wilcox the head honcho there shared pictures of his new set of twins . . . they are such beautiful children, and after somewhat of a rocky start, healthy and happy. He shared the news that another friend had passed, Dr. Ralph Eichenberg. He and his wife were missionaries, throwbacks to another era, and truly blessed each life that they touched. He was another friend in my Early Memory Loss Group, although we first met them here at PRI when we were in drugs trials for Alz. D medication before it came on the market. It really was fascinating hearing about the progression from his "DR's" viewpoint, he was quite analytical as to what and how it was progressing in himself. Unfortunately in those earlier days of drug testing there was a placebo group, DR. Ralph fell in here, so by the time that there was a drug on the market his progression into dementia had gone too far to be helped. The ethics of this placebo group is in question on many fronts, there are no easy answers.

Spoke with the director of the Alz. Ass today. She is putting me off again -- timing is just not right, too many changes are occurring within their organization, etc. -- Oh, I do so want to believe her! I had requested the listing of the Alz. Ass national with the names of their directors explaining that I wanted to send out a DASN mailing to them. She would prefer to write a cover letter and send out the info under their name -- no matter to me, just as long as it gets done. I also mentioned the Audry units to her, a self contained easy Internet access, and that I was going to put a proposal together in hopes that many Alz Ass nationwide would purchase 3 to 10 units and make them available on loan to patients. Again she seemed very receptive, was even going to talk to someone at national about this and about providing a host site and sponsorship for our chats. --- I grow impatient with her words though, I feel like I am being played the fool - but I will try and be patient (something I am not very good at these days), but if I don't see some 'proof of the pudding' soon, I will go elsewhere.


February 26 . 2001

Big day today! Today is the year anniversary of my journal. A gift for my birthday, not only did Laura create for me this lovely web site, she has maintained it for the year -- now that is giving? ! To daily be responsible for getting my journal entries posted -- line by line, I might add since I have a different type format because of AOL. It really is hard to express my appreciation for all the selfless giving, and for the gift itself which has enabled me to meet so many wonderful people, to keep a record of the days good and bad -- Laura, YOU have made my year!!! Thank you!

Wade had a nice card waiting for me in the office on my computer chair -- my 1st stop in the morning! Wade and Tina surprised me with a brunch together this morning -- Tina took the kids out of school and we met about halfway. I couldn't figure out what Wade was doing in the shopping center looking for this address, since I thought that we were going to the trailer dealership -- What a delight to see Jake hanging out the window waving at us!!! Really a lovely surprise. Tina had brought a pie from "Mom's" in Julian, a flat of fresh strawberries, and some super comfy flip-flops (purple of course LOL) Mary let the cat out of the bag on the message board, so had many "'Happy Birthday" messages from friends. Jeff called in the evening, as did my older brother who shared the wonderful news that he is getting married at the end of the month ! Congratulations! (it's about time LOL)


February 25 . 2001

Jeff and Windy and their two little ones Brandon and Madelyn met us for breakfast at the airport - Where did this last week go?? Just spent a lazy afternoon together -- it has been raining steady without a break all day, very unusual for Southern California. The guys got interested in some silly program with the machines that battle each other. Maddie is crawling now, but still doesn't want to have much to do with me. I'm looking forward to watching the Judy Garland special this evening. And without a doubt we'll be sleeping in the RV :)

I got some sad/glad news this afternoon from a friend. One of my friends from my Early Memory Loss Group has finally been released from her time here on earth. Irma's diagnosis was changed from AD to Lewy Body as she started having problems with walking and maneuvering in general -- these last two years have been extremely hard on her husband, as he could no longer keep her at home, as she progressed he was left feeling like a widower with a living spouse. I will miss, as I have, the feisty woman who was my friend, but I am glad that she has finally been released from her living death.


February 24 . 2001

Got a nice card from a friend from my Early Memory Loss Group - her husband passed about two years ago. During the time we were together in the support group, she was always encouraging and supportive -- and gave the best hugs!! She had seen the TV piece and sent me the most supportive, inspiring message of hope and love. Thank you Maxine, you are such a special lady.

We watched the basketball playoffs - Wade's team lost, but it will just make the "March Madness" more interesting


February 23 . 2001

I got a surprise phone call today from a woman who had been one of my customers when I had the Children's Resale store. She said that she had seen the interview, and just by chance had hung on to my business card with my number on it -- now that was at least 3 years ago! She wasn't sure it was me, but decided to call anyway. What a nice surprise, we had a lovely conversation. Apparently she was one of the customers that I had messed up to badly on the cash register with -- she related the story to me, including that she made the remark "Oh, it's probably just Alzheimer's" and surprise, surprise I told her that indeed it was! We donated items to her as her church was gathering clothing for the homeless. And now she has asked that I speak at her church to the women's group -- what a nice blessing to come from the interview!


February 22 . 2001

A relative of my daughter's (her husband's aunt) called this morning to ask if that was me on the TV? How funny is that, I wasn't even aware that the news spot was going to be played. Wade turned on the TV about two hours before the news was due to come on - what a hoot to see the promos! Well, it wasn't the greatest presentation on my part, but at least I didn't 'tear my pants' ( I had to explain this to my daughter, she'd never heard this way of saying I didn't embarrass myself) They didn't leave in anything about DASN :(, but I have to be content that there is one more news story about Alz., sooner or later the populace will start caring.

The kind words and support from my friends and family are always appreciated. Our grandson was so excited because he saw the puppies and Papa on TV! LOL!! The neighbor was thrilled because they got a shot of her house! And we were appalled that they got a shot of our messy back yard!! Too, Too funny!

Did get some very sad news this afternoon though, my friend Selly Jenny lost her battle with cancer. She was much admired throughout the world for her Memories in the Making program for Alzheimer's patients. And here locally as well, she was a founding member of the Orange County Alz. Ass., and very active in many philanthropic endeavors throughout the community. Her strength will be missed.


February 21 . 2001

Had my tooth pulled by the most wonderful man ... and truly I didn't feel a thing not even pressure -- he is a magician with big babies like me! Thank you Dr. Gibson!!!

Picked up Wade, it is good to have him home! Sounds from all his stories that he had a very good trip, and that his Mom, Sis and Aunt did their best to spoil him rotten! For sure tonight I'll get a good nights sleep!


February 20 . 2001

Cleaned out the hall and bedroom closet - Goodwill is going to be pleased with me tomorrow. Paid some bills, did a bit of grocery shopping and laundry and lots of games of Spider solitaire on the computer Took a nap withthe pups this afternoon (something I rarely do), but I couldn't get to sleep last night so was up till after two -- woke up to find the cat had joined us :) Have an appointment with the dentist to pull that tooth tomorrow. Wade is due in at about 9:30 in the evening, so I still have plenty of time for last minute cleanup.


February 19 . 2001

Met Tina at the train depot for lunch in San Juan Capistrano. The North ound trains weren't running this morning so we decided on this half way point to meet. Walked over to the nearby petting farm and fed the horses, goats and emu. I'll miss Ashton, we always enjoy each others company, even if we're doing nothing. By the time I got home the skies opened up and it is really raining tonight. Too bad Ashton went home, she was hoping for rain while shewas here so we could sleep in the RV.


February 18 . 2001

VERY lazy day. As a matter of fact Ashton stayed in her jammies all day. Just as well, I am still a bit uncomfortable with myself after the fire thing yesterday, so I was just as happy to stay in for the day. We painted doll house furniture that Wade had made for her, played endless games of Mancala - she is very good with the strategy, able to think and plan ahead, whereas I just play...LOL During my computer time she got on one of our other machines and learned to play Spider solitaire and the Pinball games that are on the new Windows ME. We were very disappointed in the Disney web site for kids, just like it's screen savers, full of bugs and glitches.


February 17 . 2001

Rainy day, so we built ourselves a fire, something the kids really enjoy. We only have a fire when it is raining because we have a shake shingle roof. Did something REALLY stupid, when I was restocking the fire and adding more logs I reached in and moved a burning log with my hand. Oh course I immediately went to the kitchen and ran cold water over the blisters -- they aren't that bad (thank God) but it really has me shaken. I have Ashton here and need to be ever so much more aware for her safety. How could I do such a thing? Autopilot is obviously in disrepair. I couldn't even take a shower tonight as I was afraid to leave her alone, even for a minute.

Did get some good news in chat -- a fellow member of DASN has been selected to go to Washington, DC to be a public witness to the Congressional Hearing on Alz. D. Chip Gerber was selected by the Akron, Ohio Alz. Ass and will meet with Congressman Regula - he is the only patient to be speaking -- congratulations Chip - a great honor! Sounds like he will also be getting the red carpet treatment with a tour of the White House and Washington, DC (all expenses paid! ) Way to go!!


February 16 . 2001

Rode down to Tina's to get Ashton. Tina had made an appointment to get my hair cut, but the lady had scheduled March 16 instead -- but she did squeeze me in -- and my hair looks like it was squeezed in -- sigh. Got to meet their new dog Jazz, she is really a beautiful black lab pup, and as they said very well behaved. BJ was surprising nice to me -- needless to say I was rather concerned about seeing her after the letters I wrote -- but, not a word was said. Went out to lunch with Tina, Jake and Ashton before we headed north. On the way home we stopped at the OC Alz. Ass. and dropped off the 4 generation picture, was nice to see Tara who last year was with the LA bunch and has now moved over here and will be in charge of the Memory Walk this year.

We turned in early after watching George of the Jungle - what a fun movie!



February 16 . 2001

Can't seem to get enthused about doing anything -- sure am looking forward to Ashton's visit for the weekend.


February 15 . 2001

Well, got Wade safely off at the airport. We were there in good time so he made sure to get a parking spot that I would be able to find -- at the very top of the parking structure! I came home and started in on cleaning out some of my drawers, but have to admit I feel kinda' lost. I set the timer to go off when he landed in Detroit for his flight change, so surprised him with a call!

Once again my journal came in handy! The Alz.Ass wanted the sign that I had on the front of the picture, and of course it is long gone and I had forgotten exactly what I had written. So I just went back to the day of the Memory Walk, and there it was! " 4 Generations! 2 Inherited Alzheimer's....... Our Sponsors Helping to STOP the Legacy" Now I'll have it to take in to them tomorrow.

Interesting chat this evening, we all agree that "the Aricept Generation", as Laura has so aptly named us, needs to get a book out -- what is out there now for the newly diagnosed is really out of date.

Compounded a problem that I have been avoiding since before Thanksgiving. I broke off half of my tooth then. It loosened it, but it hasn't been giving me any pain so I have avoided going to the dentist. Well, I started giving it a good yank to see if I couldn't get it out myself and now it is half out and won't go back into the socket -- what a ding-dong, guess I'll have to visit the dentist now :( for sure Don't know quite when though -- I'm scheduled to be at the Alz. Ass at 9, then drive down to my daughters for breakfast and a haircut, and bring Ashton home. Guess I'll try and see if I can get a late afternoon appointment -- unless I can get it out before then :) (anything to avoid the dentist!!)

Wade called, he landed safely - it was midnight NC time 9 his time so he was still ready to go -- everyone else is ready to crash


February 14 . 2001

Happy Valentine's Day! Grandkids called me this morning -- always makes my heart smile to hear from them. I found that I have a bunch of miniature daffodils peeking their heads out of one of my planters -- they are so beautiful. I obviously had nothing to do with them, me with the black thumb. < VBG> Kinda grumpy today getting Wade ready to leave tomorrow for NC and our nephews wedding. Todd called Saturday I think, and was going to try and get tickets for Tina and the kids to go too -- My SIL had called and laid a guilt trip on him -- strange, I was panicked at being left alone with no one! I still wouldn't want to go on the airplane, too much for me, overcrowded, uncontrolled noises, claustrophobia! Still I was scared that I would be alone with no support system to call, mind you they are living an hour and a half away, still.... But, I guess he wasn't able to book them on such short notice. What an emotional mixture, sad that they can't attend, for it would be a wonderful trip for the kids, especially being able to visit a real working farm and chicken ranch, glad that my comfort is still in place. Sigh, it was easier when I felt in control, now all though I appear so, I am a mess :( Alz,Assoc called and asked if I would let them use the "4 Generations" picture on their Memory Walk brochure and mailers - I'm very pleased and flattered -- if you haven't seen it, it is on the photo page. They asked if I would care to be on the committee and I had to decline. I did ask if perhaps this year they would have a bandana or hat or? that would be worn by the patients who participate. They seemed receptive to the idea-- we'll see


February 13 . 2001

I am behind as usual on my mail and reading of my friends journals. I was so glad to hear my friend Morris is going to be the featured presented at the Alz. Conference in Australia in March - he is really helping to open peoples eyes to the possibilities and hope that exist after diagnosis. Chat was also discussing some of the smaller compact PC type units that will connect with the Internet, at a fraction of the cost. Morris & Christine are going to present this at the conference in hopes of providing more PWD (people with dementia) access to the Internet. I feel so dumb, as I know nothing about them. Carole has done a wonderful job of researching it all - I hope to get the particulars from her and ask that the local Alz. Ass expend some money directly to the patients by making them available on a loan out basis.


February 12 . 2001

Well, I am sure making a dent in the firewood pile, couple more days and it'll all be cleaned up. Sure did have a good nights sleep in the RV. DD crawled under the covers with me, and Roo slept on my feet. My friend called and let me know that she was going to be allright, sometimes we have to hit bottom before we can see the light at the end of the tunnel, it was sure nice talking to her -- made me feel much better.


February 11 . 2001

Sunday! You guessed it! We went to the airport for breakfast. The kids spent the night and so treated us. Windy and I left the boys to watch TV and went out shopping -- rain or not! We'll be in the motorhome for sure tonight, it has been pouring all day -- and it is cold!! Kept the fireplace going all day. Easy lunch of chicken and dumplings!


February 10 . 2001

Wade is still miserable with his arm -- turning yuck purple and yellow color now -- must be on the mend. We've got some rain on the way tonight, so we are looking forward to spending the night in the RV. Jeff and his family came over and we went over to the motorcycle shop - Jeff has fallen in love with the new Drifter 800 -- it looks a lot like the Indian style, and has convinced himself that he needs it to commute to work so Windy can have the car. It is a beauty for sure, and luckily doesn't have much room for aftermarket add ons, which can really boost the cost up! Not too pricey though, about $8,000. Much more reasonable than the Harley's that's for sure


February 8 . 2001

Somewhat unsettling day for me all day, I have a friend in distress that I am unable to reach. She works so hard to please others, yet totally neglects herself. I got a brief e-mail from her, and tried to call her yet she refuses to answer. She sent along the most wonderful packages and I am having a good time sorting through all the treasures -- and yet at the same time I feel guilty that I am unable to help her, she has fallen again into the depths of depression. The grief of her continuing battle with her husband's Alz. D just overwhelms her. Again I am powerless to help.

I did call a friend of my brothers this morning, at his request, and at least I was able to help there with some suggestions for a coworker of his who is concerned that she may have the beginning signs of Alz. D.

Tina called this afternoon, she had finally found a family dog and is very excited, a black Lab named Jazz - she surprised the kids with her after school and they are so wound they may never get to sleep tonight! They called this evening to tell us about her, Jake couldn't get beyond "Wazzup?" and giggling -- they finally were threatened with a two minute limit and were able to fill me in on how wonderful she is. I love happy children! Jazz sounds like she will be a nice addition to the family -- she is a rescued dog, just a year old, and sounds like she is very well mannered -- I may have to take Roo and DD down for etiquette lessons LOL!


February 7 . 2001

Tina called and said that things are much nicer in their home, BJ is really making a concerted effort to be nicer. Good news for the kidlings! I went off to a Chinese Calligraphy class today. It sounded interesting. I felt rather uncomfortable, but did stay for most of the class. I need to do something that is creative and gets me out of the house -- I'd love to try cake decorating, but don't think I could resist eating my projects and I'd end up heavier yet!


February 6 . 2001

We went to a Caregiver's support meeting to meet up with a good patient advocacy friend who facilitates there. She was excited about my test scores, and was eager to share an article about living with FTD that she had found. Turned out to be the one penned by my friend Morris, I sure made points with her when I told her that I knew him ! Talked to the lady at the hospital that was supposed to get the ball rolling on the patient support group, and was told that her grant request was denied by the Alz. Ass -- they told her that there were ample support groups for the patient in the area. HUH??? Anyway, as usual it seems to be an uphill battle - one that is easy to lose site of..... but the two promised to keep trying. (what more can I ask?)

We left there and took Wade over to the doctors, turns out after x-rays that he has chipped the bone off of the end of his elbow -- it's just kinda' floating around, but they do not foresee any problems with it. He has to immobilize it as much as possible and we will continue with the ice. The underside of his arm is a dark angry purple and red right now, but he feels better knowing exactly what is wrong.


February 5 . 2001

Wade's elbow and upper arm are still badly swollen, and starting to bruise badly - I have made him an appointment with an orthopedist tomorrow. Think the pain is convincing him it might be worth a doctor checking him out - He will be there! Spent most of the day catching up on all the household chores I always ignore when the kids are here. Sent an e-mail off to the local Alz. Ass reminding them that I was aware that the board met in February and were they still going to stand by their installation of a patient on the board -- I really was more tactful! LOL


February 4 . 2001

Went to the airport as usual for breakfast, but today Ashton wanted us to drive the Model A. Wade has a huge teddy bear in the rumble-seat which we usually remove when we have passengers, but she insisted in squeezing in with him, and she really was squeezed in. Beautiful day again today -- yesterday was 93, don't think it got past 83 today. Wade decided to get up on the roof and wash down the leaves that had accumulated there. Being as it is a shake roof the side that gets no sun got pretty slippery when he hosed it down. With trusty knife in hand he decided to trim some of the smaller tree branches that were touching the roof -- with a good yank on the ungiving limb he slipped, just missing his throat with the knife. Took him a while to catch his breath and climb down. He land very hard on his left arm -- it started swelling up immediately. He won't let me take him to the doctor so I've got it packed in ice and have him safely planted on the couch. He was in shock for quite some time. Tina came to get Ashton and brought us some lovely flowers and a flat of strawberries from the field local to her. They are WONDERFUL! So sweet, you just wash and eat! Guess nothing more has been said about Jake's words - I am relieved, I really was worried that BJ would take it out on him. No word back from her re my last letter.


February 3 . 2001

Got a call early this morning from my step-dad, he was crying said Mom had put the tea kettle on, when he told her not to, and burned the stove. She is getting progressively worse, and as much as I try to explain his words infuriate me. I just have not an ounce of empathy for the man. He continues to berate and holler at her, to "shake her up, make her think!", and no matter how hard I try to explain that this is only making matters worse, he choses not to hear. He is livid that she can still remember how to pour a soda for them both but is clueless to fix a sandwich -- yes, I calmly explain this is normal in an AD person. "NO! She is just being stubborn!" I told him to place her, that it would be best for them both, well maybe he will then, maybe next week he has too many appointments and meetings to go to till next Thursday - maybe she'll get better -- this is so frustrating for me, I am just powerless. And I feel bad that I can offer him no comfort, but he makes it very hard. I will try and call the social worker over there on Monday maybe.

We picked up an old friend and headed down to watch Ashton take her test for her purple karate belt. I had bought her favorite Powerpuff Girl doll (Bubbles) and dressed her in a black karate outfit with a purple belt - Ashton was delighted! Bj was there also, but I just ignored her - I am not going to get into this in front of the kids. So we switched kids, I gave Todd his birthday present, and Ashton came home with us for the night. Tina will pick her up tomorrow afternoon. Todd did say he was sorry for what was said -- too bad he can't see the destruction his Mom is doing, for it can't be undone.

This is the letter I sent in response to her wanting exact words: (again copies to my daughter & sill)

Explain, and use the exact words.

On our train ride home, quite out of the blue, Jake stated to me, "Did you know my grandma hates you?" "She hates DD too, but she really hates you." "But, I love you ... lots" I just answered , "I love you too," and quickly changed the subject. Why a 4 year old should have to carry this burden is non existent. The conflict of emotions, wanting to be loyal to us both, as he loves us both must be very trying on Jake, as he said the same thing to Wade last time he was here. Wade decided not to share this information with me, because he knew it would hurt my feelings. But when I told him about this conversation he told me what was said last time. He also said that he had told Todd about it. This obviously is upsetting to him, that is twice that he has brought it up -- and we are unable to offer him a solution. Again not appropriate at all for a 4 year old to have to worry over. It really is of no concern your feelings towards me, but I ask you to please keep them to yourself. What are you trying to accomplish? Your words certainly aren't hurting me, they are not causing our grandchildren to love me any less, actually they serve to undermine you, and hurt their hearts. Children need the security of love and concern, yours and ours. Detrimental statements, putdowns, cursing are injurious to developing, and are blatant child abuse, for Jake and Ashton are defenseless to mental cruelty, they do not have the luxury of being adults where they can remove themselves but find a coping mechanism in sarcasm, self confinement, or ... ? Our grandchildren need nurturing, loving, supportive people around them, the world is chaotic enough -- family, all of the family -- should be a safe harbor, a loving, understanding, cohesive unit in their eyes. Actually, I don't believe I can think of any defense that you can offer for the cursing language you use directed at the kids, nor for trying to instill your hatred, and negativity. There is nothing to be gained by you or them, it is a loose -- loose scenario. They both deserve to be winners. -Jan


February 2 . 2001

Gosh, I hope I get a copy of the game Laura is suggesting soon! I need all the help I can get! Jake is doing a fine job of beating me at all the games -- dang, even Candyland. LOL Guess my SIL tore into his mother last night, she denied having said anything ... surprise! But, I guess my graddaughter was queried and she confirmed. Got a note from BJ - only thing she said was "please use exact words, then I can either confirm or deny" I will have to find some quiet time to compose an answer and myself. - In the meantime, it sure is fun having Jake visiting - - he without a doubt, gives the best hugs!


February 1 . 2001

Took the train down to Oceanside in the morning -- no parking spaces were to be had, so I parked behind a restaurant, decided if I get a ticket it would be worth it. Tina & I had breakfast, then later went by Ashton's school and surprised her and took her out to lunch. Then we picked up Jake at his school z and it was back to the train depot. Jake and I had seated ourselves on the West side of the train snd so enjoyed a lovely view of the ocean and all the surfers. On our train ride home, quite out of the blue, Jake stated to me, "Did you know my grandma hates you?" "She hates DD too, but she really hates you." "But, I love you ... lots"I just answered , "I love you too," and quickly changed the subject. Why a 4 year old should have to carry this burden is non existent. The conflict of emotions, wanting to be loyal to us both, as he loves us both must be very trying on Jake, By the time we got home I was fuming! I called Tina and let her know what was said, then decided to wait till Wade got home and talk it out with him. Seems that when Jake was here last time he had said the same thing to him (not wanting to hurt my feelings hadn't shared it) So, I have blasted off a letter to grandma BJ -- poor Jake is obviously distressed by her hurtful words and looking for a solution by telling us. Guess my stopping the antidepressant is not helping at all in maintaining my cool - of course Jake is oblivious as he should be, enjoying the puppies and the extra attention from Wade & I. Since this is being used as my storage of documents, and I may need to defend my harsh words - think I'll just tuck a copy of the letter in here - and yes, watch out for the wrath of this Mina!! LOL (copies of this also went to my daughter & sil so there would be no confusion as to what I said or didn't say)

BJ; ENOUGH ! Please I urge you to stop your divisiveness. You are being extremely cruel, abusive and uncaring as to the well being of our grandchildren. I personally do not give a rat's backside what you think about me, but your mean-spirited words about me directed to the children are cruel and are causing them much emotional distress. Can't you just accept that they can love us all ? That's what is family is -- cohesive, caring and supportive of one another, despite differences. I have never been anything but supportive of you to them, you are their Grandmother as I am. You claim to have a Ph.D. in psychology, and yet your motives, actions, words and deeds are sick in their intentions, you are the ultimate manipulator and destroyer of relationships. You have succeeded in alienating the rest of your family, making geldings out of the men and dividing them for generations - I will not allow you to succeed with our daughter and our grandchildren. - Jan


January 31 . 2001

Wade took off this morning to visit his cousin for the evening in Fresno -- about 4 hours away, so he'll be spending the night and be back tomorrow. I spent the afternoon shopping, bought more baby yarn (I've gotten another 27 hats and 3 blankets finished !) Not too sure what to do with myself alone, not really enough time to get into any big projects, so I think I'll take the train down and visit Tina and the kids tomorrow. Had a great dinner of popcorn and Dr. Pepper!


January 30 . 2001

We enrolled Wade in a clinical trial today. It is for the treatment of "tennis elbow." He had to fast, so was starving (naturally) this morning. They did a full blood study and sent us out for x-rays. From what I understand he will have to go in daily for a week and they will attach medicated electrode pads to the elbow area and run a mild current through. It is supposed to help with the pain and inflammation. Sounds interesting anyway. Still worked on catching up with laundry in the afternoon --


January 29 . 2001

Spent the day recovering from the weekend. Picking up the house, doing laundry -- you know all those really fun things! Got a nice note from Brenda Avadian asking me if I'd like to submit an article for her next book, Finding the Joy in Alzheimer's -- right now I just feel rather UN-joyful. I have been promised by so many people that there would be a patient support group, that counseling and support would be made available to the patient .. only words. I feel frustrated in my endeavors to make the diagnosis and acceptance easier for those who have come after me -- we still do not exist in the Alzheimer's community as people in need, only the Care Givers ... SIGH . .. I'll reread her post another day, perhaps the Joy of this disease and its ramifications on my life will


January 28 . 2001

Seemed like a nice morning so we pulled out the Harley. We went to the airport (as usual) for our Sunday morning breakfast. Little slow on the uptake this morning, and by the time I was ready to go the clouds were moving in once again. We are only about two miles from the small local airport, but the ride over was cold enough to convince us that this may not be an ideal riding day -- getting old don't you know! A few years back we'd have just layered on more clothing! lol

I made a pot of clam chowder, and Wade invited Jeff over to watch the Superbowl game with him. That worked out well, I didn't have to watch the game and was able instead to attend the DASN chat. People are still having trouble converting to the yahoo account from the egroups -- but the chat room's really nice, many options, easy to understand -- once you get in A lot of good pharmacological info shared tonight -- very knowledgeable people in our demented group. Many have taken to using a new term to refer to 'us' as PWD - people with dementia.


January 27 . 2001

Went looking for the game ''Zoombini's" that was recommended by Laura, my webmaster. Someday I hope to find it!! LOL It is getting to be an expensive hunt. We didn't find it again today but did find a Corel Clipart Gallery and DVD notebook software that we didn't realize we needed! I got really frustrated with the move to Yahoo! by the egroups. A friend helped walk me through it this morning, as I had trouble with the conversion last night, and all seemed to be going well. Then this evening when I tried to log on to chat, I couldn't get in - Lou to the rescue again, he created a new account, which is all fine and well except that it does not recognize all the egroups that I was signed up with. . . Sigh Evenings are NOT my best time, so I'll have to take a look at it in the morning.

I find my journal a handy place to keep things that I don't want to lose, and since I had to spend far to long recovering this for a friend I will post it here. It was sent to me in regard to what may now be my diagnosis.

Focal Temporal Lobe Dysfunction Called A Distinct Form Of Alzheimer's Disease


January 16, 2001

WESTPORT (Reuters Health) - Focal temporal lobe dysfunction represents a distinct form of Alzheimer's disease, rather than a stage of the disease, according to a report in the January issue of the Journal of Neurology, Neurosurgery and Psychiatry. Using single-photon-emission computed tomographic imaging (SPECT), Dr. G. Villa, of the Istituto di Neurologia, Rome, Italy, and colleagues evaluated cerebral perfusion in 12 controls and two groups of patients with Alzheimer's disease: 10 with focal temporal lobe dysfunction and 14 "with the more typical profile of diffuse cognitive impairment." The Alzheimer's disease patients also underwent complete neuropsychological assessment. The investigators report that two scintigraphic patterns of abnormalities were observed on SPECT. Patients with focal temporal lobe dysfunction exhibited a bilateral mesial temporal hypoperfusion, while patients with diffuse cognitive impairment exhibited a posterior parietal and temporal parietal hypoperfusion. "The combination of neuropsychological tests and [99mTc]-HMPAO SPECT may be very useful in identifying patients with focal temporal lobe dysfunction from the wider group of patients with diffuse cognitive impairment," Dr. Villa and colleagues conclude. "This issue is particularly worthwhile, as there is increasing evidence that patients with focal temporal lobe dysfunction have a slower rate of cognitive decline." The researchers define focal temporal lobe dysfunction as "a pattern of cognitive impairment restricted to memory (either verbal or nonverbal) and language (lexical and semantic components) with no significant deficits in perception, construction, attention, or executive functions." J Neurol Neurosurg Psychiatry 2001;70:22-27.


January 26 . 2001

With tears in my eyes and a lump in my throat, I submit for my journal today a letter from my brother, who has become over these last years my champion. Someone who I have turned to, and quite unexpectedly, found support, guidance and wisdom. He instills strength and his supportive words are very cherished.

Hi Janice,

This is a CONGRATULATION for your hard work. You didn't give in to the pre-conceived dooms-day predictions. You fought an all out war with an unknown enemy, and WON ! You had the courage to go beyond the boundarys set for you by the doctors and then to prove that these boundarys were nothing more than a easy out for the medical experts. It apears that these experts were just too comfortable with the easy way to handle Alz D. They could just tell a patient about the horrible things that were going to happen, then just go on about thier own lives, feeling that they couldn't, therefore wouldn't try anything new. You have proved them wrong at every turn. When we first talked about your being diagnosed as early stage Alz D, you began to look at other ways to fight back. You have been extremely active in bringing the information to the support groups. I'm very proud to have a sister like you that has gone to the extremes of fighting back against the bad predictions. We talked a couple of times about your progress, and I said that you would find a way to feel whole in mind as well as body. I said to you that if by accident a hand was cut off, and then able to be re-attached, the body would after a while be able to re-connect nearly all of the nerve ends. This is done with therapy and hard work. The doctor that puts that hand back on is a glorified mechanic. He has no part in the actual re-training of the nerve pathways. I think this also applys to Alz D, and you have proved it. The so-called experts would like to have the world believe that only they can do the healing. I'm sure that they will try to deny your accomplishments. It is in thier best interest to do so. I want to encourage you to keep in the fore-front, because this fight can serve as a ray of hope for so many others. It proves that the experts are only in it for the MONEY ! I guess that I just don't trust people who have thrown away common sense for a fancy piece of paper on the wall, and who have given in to the lust for money. You have given them a good lesson, I hope they will stand up and take careful notes. This can save so much grief for others. Thank You for being my Sister and a HERO !!

Alan

January 25 . 2001

There was a bit of confusion with Wade and his cousin finding each other this morning, his cousin insisted he was at 'the store' having his truck downloaded, when actually he was at the store's main distribution warehouse -- luckily Wade was familiar with both and was able to track him down. My folks got here about noon, and I was able to bring them into chat to visit for awhile, my step-dad is going to the classes at Gateway, and is really trying to understand the computer and all it can do for him - he has already ordered one of the very latest computers with the new flat screen the Internet is a very hard concept for him to understand - at 85 I do admire his moxie! Not one of my Mom's better days, she is becoming less and less communicative -- still smiles, tries to react to conversations but her comments have nothing to do with what is being discussed. I finally found out why she is not in day-care ... money ... my step-dad is very stingy with money unless it is for him ... SIGH ... He started complaining about how hard it was to be with her, and I suggested that he place her then, she would be very happy and content I believe -- oh no, I can't afford that. (this man is close to being a millionaire, but it is HIS money) I don't know why I try and have a discussion with this hard headed German! The newstruck showed up about quarter to one. Sean came in and got his equipment and lights set up. Their timing was great, about the time Sean was all set up Pascal Pink arrived. From what I understand this is a project in collaboration with the Los Angeles Alz.Ass. about Early Onset Alzheimer's. He explained that it will be packaged with an Oprah show sometime in February. What they do is do newsstories then use the Oprah show as a lead in to try and get people to stay with the same channel longer. The interview went okay, for some reason I was really struggling to answer his questions, perhaps it was how they were phrased, I don't know - I just didn't feel like I'd done a very good job. Wade declined to be interviewed, says perhaps if he had a Paxil (LOL) and was better able to control his emotions, that discussing it makes it all to real. And yet off camera he was able to bring up very important points (our generation falling through the cracks, no services -not seniors -income impossible with a demented bread winner, etc.) They hooked me back up with the mike and Pascal tried to query me so that I could give that information -- but it was just to much for me to try and remember -Wade made such good points -- well articulated -- oh, well I gave it my best shot Not, to worry sounds like it will be a short bit of information on my part and will be well edited. I am just so very glad that Alzheimer's is getting more press -- perhaps people will tune it out initially but sooner or later they will have to start listening -- our future not just as people with, and affected by dementia, but as a nation that will be unable to ignore the burden this disease will place on our economy. We spent the evening watching 'The Music Man' - I really do enjoy the old


January 24 . 2001

Lazy, lazy day! Neither Wade nor I even got out of our pajamas all day! If it hadn't been that I spilled a pecan pie in the oven and had to clean it up I would have had to say we did absolutely nothing today, and enjoyed it immensely! Answered some E-mail, watched the Jim Carrey movie, Me, Myself & Irene, crocheted a bit but that was about the extent of my efforts! One of Wade's cousins called, he will be in town tomorrow in the morning (a trucker), so that works out well for me as I'll be able to tidy the house much better with him gone. My step-dad called and said with the rain they wouldn't be by - oops -- I thought they said that they were coming on Thursday (tomorrow) not today -- Well, see the Lord has things in his hands -- no rain predicted for tomorrow, so they will probably come by then, and be here for the TV interview (which is what I had initially planned on)! I don't want to tell them and have him make a big deal of it with my Mother and pressure her, nor do the TV people know that she will be here -- it'll just happen if it's meant to be.


January 23 . 2001

Spent most of the day buying, cutting, and finishing lumber for the belt racks. Made up a new flyer, took me a while but I was pleased that I was able (after a bit of fumbling) to create one on the computer. I received the following question from a friend, I have decided to enter my reply here in my journal. For now these are my feelings, I want to see if perhaps they change as time goes on, and this is the best place to save them.

Among them is one asked by people who have been recently diagnosed with AD, "What should I do?"

Would you be kind enough to offer your advice?

Thank you Mark for thinking of me, for you certainly know I have very strong opinions on this particular subject .

Now that they have a diagnosis they should at last have a name (and at least a bit of piece of mind) as to what has been terrorizing their lives. They no longer have to cover up, and be defensive -- this is something that can be discussed and understood given that one empowers oneself with knowledge. First and foremost, I am sure the individual has probably (hopefully) been given crisis counseling by the Alz. Ass. and informed of the need for swift action in matters pertaining to financial and end of life decisions. This in and of itself seems to really trigger the 'stages of grief.' For usually the emphasis is placed on the CG, and the losses and hardships that they will suffer because of our diagnosis -- and we in turn are handed the coffin nails and expected to quietly acquiesce into dementia, and we lament and rage against all we see as our losses that in most instances are not acknowledged. I sincerely believe after diagnosis that partners need to have a joint counseling together. Many times the signs of dementia have been hidden from the CG, oft times there are extreme misunderstandings - a spouse may think their partner has been carrying on an affair - finances may be in a shambles - many relationships are on the brink of separation, etc., -- and then a devastating diagnosis is given and is supposed to be shared intimately among two people who may be in strong need of counseling for what has been carefully hidden and what has been misunderstood. So to me to have a strong foundation of support the air needs to be cleared. The diagnosed person needs help in understanding why they chose to hide their dysfunction, and an understanding of their erratic and uncontrollable behavior. The spouse needs information on the behaviors exhibited, what can be expected -- that there is no affair, no loss of love -- just a loss of self of the diagnosed person and that their actions are supportive of that diagnosis. Then too, I think the person diagnosed really needs help initially with grief counseling -- there is so much of an unknown future ahead of us that we feel a loss for, and grieve for long before it will ever come to pass, as well as grieving for the present loss of self and position in our world. I would advise them to seek out a support group of peers, so that they will feel less isolated in their diagnosis. People who are not diagnosed tend to discount our fears, as they question and we try and explain the early changes, often they will comment , "That happens to me all the time," and we are put in a position of proving and defending our diagnosis -- Heavens, why on earth would anyone really choose this diagnosis for themselves!! So instead of sharing and being able to discuss and perhaps understand better we retreat, isolate ourselves -- this is only good for compounding the effects of depression! I would let them know that there is now an online Internet support group, entirely composed of people with dementia. eGroups : CWPML , that we have founded a nonprofit group for the support of dementia patients with a sting patient advocacy DASN Homepage , and that we have established a twice a day chat hosted by our peers in which we can communicate in real time. These groups are an international composition US, Canada, UK and Australia -- as much as we are the same we are different and there for each other. Also there are many patients that keep an on-line journal, and you can read of their journey and how they have found ways to cope. Subscribe to Ageless Design, Alzheimers Daily News Service , and keep themselves abreast of the latest occurrences in the Alz. D world. And finally I would tell them to be hopeful. The advances just in the last two years have been phenomenal. And for some of us the new drugs, and a strong regimen of self help are making a great difference. My tests scores for the last 4 years have shown incremental improvements -- not decline.

I hope some of this will be of help to you Mark, I probably could go on and on, but I think this just about covers it! Thank you again -


January 22 . 2000

Before I loose this, I want to share with you a poem that was written by a Caregiver who felt that is was okay to give her permission and to accept death, she mirrors the Dylan Thomas poem that follows.......

Go Gentle, Gentle
by Charlotte Shaw Riggle

Go gentle, gentle, into that good night.
The sun yields sky to stars, to dark, the day,
Without a struggle, without need to fight.

Colors dim, sounds fail, mountains fade from sight,
All living things within strong Nature's sway
Go gentle, gentle, into that good night.

For, as you said, strength need not prove its might:
The strong must be willing to walk away
Without a struggle, without need to fight.

Then why, oh Mother, should you stay and fight
So long? Why should you not go on your way?
Go gentle, gentle, into that good night!

See, the angels come! See? They come to light
The path for you, to guide you on your way,
Without a struggle, without need to fight.

Now, my mother, before you take your flight,
Bless me once more, then go; dear mother, pray
Go gentle, gentle, into that good night,
Without a struggle, without need to fight.

Dylan Thomas--

_Do Not Go Gentle Into That Good Night_

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because there words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

January 20/21 . 2000

Jeff and his family came over this weekend. I was expecting them on Saturday for lunch and then we were supposed to go looking for houses with them closer to Jeff's new job. Had a wonderful BBQ steak lunch then it was decided it was too soon to look at houses, that they were at least 2 months away from that move. So..... they guys headed out to the motorcycle shops, and Windy and I and the kids went shopping. They ended up spending the night and we all piled into the Model A - Wade, Brandon & I in the front seat and Jeff, Maddie & Windy in the rumbleseat. Did our usual Sunday breakfast at the airport. The view was absolutely spectacular with the backdrop of the mountains blanketed in snow. We took the long way home and drove by Disneyland so the kids could see all the changes -- traffic all around the park was backed up for miles -- they are having a 'soft opening' on the new California Adventure, don't think that they really did a good job of anticipating the crowds. They also opened a new area called Downtown Disney (specialty shops, restaurants, night clubs) last weekend, so that is bringing in a lot of people too-especially since it is free. The new parking structure is massive -- touted to be the largest ever built -- too overwhelming for me! We are expecting rain early this week, so Wade and I will probably come back then to sneak a peek when the crowds aren't so bad. Still trying to find the game recommend by my webmaster Laura, the Zoombini's! sounds like fun! The hunt is getting to be kinda' expensive though, Wade keeps finding other things that he really didn't know he needed till he saw them and have now become a necessity! LOL


January 19 . 2001

Picked up my new glasses today -- I am really having a very hard time adjusting to them. My old prescription was a blended trifocal and these are a regular bifocal. It is like I have to learn all over how to look at things - I have a huge headache and I am quite frustrated this evening. I will give them a few days more -- think maybe the line is situated too high. Hope I can adjust to them soon.

Gloria Lopez with the LosAngeles Alz.Ass called this afternoon and asked me if I would be willing to be interviewed by the local TV station and give some insight and perspective from the patient. I am so very excited to have such a strong patient advocate in a position that she is willing to get us publicity and recognition (she is also the one who set up the Oxygen interview). So Mr. Pascal Pink of Eyewitness News (ABC Channel 7) will be here Thursday afternoon with his film crew. What will make this nice is that just by chance my step-dad called yesterday and said that they are going to come by Thursday - I hope that they will be here for the interview - I would really like them to see my Mom too -- for her social being, her attitude really do reflect my future -- we have always been so much alike. Seems that they are going to be over this way to go to the courthouse to straighten out Mom's social security account -- seems she never did reregister after they were married. With all the government computers now communicating with each other the Social Security Administration sent him a rather demanding letter, indicating that my Mom was committing fraud -- what a mess! But, the outcome is that hopefully they will be here for the interview!


January 18 . 2001

One of the comments that I got in response to my posting about my reevaluation visit had to do with the fact that this had also been done to them (telling them later after diagnosis that they did not have Alz.D perhaps). The question posed was perhaps that this is done intentionally to Alz.D patients to see their response. Perhaps so ... I know for me the period since October's testing and the Family Conference was fraught with self-doubt, reevaluation and reaffirmation. The memories and recollections from a trip taken less than two years ago and repeated in November, were just not there -- sometimes a cue, or someone reminding of things will bring them back into focus -- that just didn't occur (oh, and I really wanted them too!) As I have written here in my journal I am part of a group called "Stitches From The Heart," we make knitted and crocheted baby items -- booties, hats, blankets -- for preemie babies in the hospitals without families, or without funds. I was very happy to join this group, for it gives me something to do in the evening during TV time since I find I don't care much for what is on these days, and I have a hard time following the story line of a movie. Initially they enclosed many 'easy' patterns -- once a very proficient crafter, I found that I could only do one - - very frustrating. So again and again I have tried to remember, to follow the step by step instructions, and over and over I fail. I seem to do okay with cooking instructions, I cross them off as I go. Especially now that they put pictures of the necessary ingredients on the box, and yet throw in a portion of a cup and not a whole cup and I get confused and flustered. Sitting in the office on the computer is fine, add Wade talking and then the phone ringing and I find my system in panic mode for the moment. I find multitasking, as it is called, a stretch. In some instances it seems to be okay. I am still scattered though, I do far better at just giving my attention to one task at a time, then it is accomplished without stress or frustration. Days are lost, I am constantly trying to figure out what day it is. And although I was a voracious reader, this too is still most difficult for me - I find that into the second paragraph the first has been lost, rereading seems to do no good, continuing on, expecting it to 'spark' as the story goes on doesn't happen -- they are just words I am reading, no sound connection to them just words on a page. My vocabulary is still lacking, and yet has greatly improved since I started on the Internet, particularly in journaling and in chat. My chat abilities have improved with practice and time. I can follow more than one person -- if I isolate and answer their questions one at a time. I'd really love to be able to sit down with these folks and converse, for in chat I find that I can be open and honest -- not guarded in my wording -- for if there is a misunderstanding it can be readily cleared. But unfortunately too, as in other social situations there are always those that speak-up and those that sit quietly listening -- and I tend to be a 'Chatty Cathy.' I really don't mean to override others, it is a feeling when I enter chat that FINALLY I have people that I can converse with that will understand, I'm excited by good conversation relevant to us, I am energized and recharged to further along understanding and support for our group, and those that we represent, to the Alz.D community at large. So, how can these things be measured in tests? Loss of memories (not loss of words read 5 minutes before); loss of creative ability; disorientation with the day of the week; inability to follow a story line; cognitive retraining that passively occurs with use of the computer (in particular the Internet) -- can these types of things be clearly marked in test results? Abstracts are an important part of our makeup particularly as we grow and grapple with difficulties in our lives. We all strive to maintain, continue on even if it means changing the path on our course -- The Psychiatrist gave a good example to me - If an earthquake were to fell one of major highways here, it would be an inconvenience not an overcoming consequence. For even though we could no longer make use of the highway, there were numerous service streets that would get us to our destination -- maybe not as efficiently, but we would still arrive.


January 17 . 2001

I have a tough time remembering it is "01", I can't believe that the year 2000 passed so very quickly!

We had a good day today. We worked on getting about half a dozen karate belt racks cut and finished, also, at a customers request, we made a couple of rack cases. Guess they are smokers and wanted to display their belts and keep them clean too. We have really started out this business slowly, to make sure that we could fill the orders in a timely manner. We only have them displayed in two karate dojos, and have had over four dozen orders from them - I think tomorrow we are going to put them in four more, as we are getting more efficient and (finally) working together as a team on them. I tend to be a perfectionist, and Wade just wants to "crank them out" -- but we seem to have been able to compromise. I am getting a lot of good feedback on the DASN articles that I forwarded, slowly but surely! The content of many are so good that I felt like we were just 'preaching to the choir' and so I just had to share them with others in the Alz. community. Hopefully they will reach eyes that will value and make use of their content.


January 16 . 2001

I have to admit I have avoided writing in my journal my mind have been in a turmoil since October, and my reevaluation then. The consequences of the outcome were staggering (at least they were to me) On the positive side, if they decided to reverse their diagnosis and say that I did not have Alzheimer's Disease, then pray tell how they have reevaluated me for the previous 4 years and reaffirmed that diagnosis? Indeed how different these last five years might have been if it were just that I was inherently crazy. Surely it would have been treated and dealt with far differently -- Ah, but a reprise on life -- those years could be forgotten, set aside -- a better way to manage my limitations might be found. On the other hand, has the proactive stance of this last year in particular -- most importantly the Internet; also brain games, Aricept, and Vitamin E. This is surely an important issue as the increase in my test scores has been documented for the past 5 years now. As you can tell this is just a tip of the iceberg on thoughts emotions and frustrations that have bounced around my head! I'm one of those that choses at times to just ignore the issues (or at least try to !) by writing down emotions, feelings frustrations somehow it gives them a life. This was a great quote shared by a friend --
DASN journal keepers take note:
E. M. Forster once said, "How do I know what I think until I see what I say?"

Well, I (finally) had the family meeting to discuss the results of the October Reevaluation. I don't have it in writing yet, so I am writing only my recollections at this time. I did tape record it though and hope to find some quiet time today to review that and make notes. The first half went VERY well. The psychologist (?) went over every test, explaining again what the test was and the changes in my test results. The test scores were presented in an overlay, for the past 3 years. I do have the copy of that now with me and I happen to still have 1997, and can see that '97 and '98 are almost exactly the same, although there were some slight changes. This is where to me the puzzle gets interesting ... I started Aricept in March of 97 (wish I knew when I started the increased vitamin E!) Anyway my tests scores (particularly in Verbal Memory) have changed gradually from '98 : severe to moderate; '99 : moderate to mild; and now in 2000 jumped radically -- all are in the normal range. On the other areas of testing -- Remote Memory, Attention, Language, Visual Spatial, Executive Skills and Psychomotor Speed the same incremental increases can be seen -- the lines parallel each other with a gradual increase in ability. Even in the areas that I scored normal initially -- the increase in ability is seen in the same incremental steps. I'd be glad to fax it over to you if you are interested. The second half of the meeting was not as well received by me - I really DO have a hard time dealing with pompous asses. There is no room for conversation, understanding or give and take it is just his opinion and divine knowledge that is supposed to be inhaled and accepted and revered --- dang I have far too many questions, concerns, and so does Wade. I wasn't going to say anymore about our initial visit, but in the end decided to. I told him that he had caused more chaos and turmoil in my mind and life because of his remarks, and he said yes he knew that, he meant too! My Lord why would anyone, especially a doctor, want to intentionally cause distress -- this has been a rocky enough roller coaster ride without him deciding I should do it without a seatbelt! The meeting did end on a positive note though. The University is going to put together a questionnaire that will be distributed to any Alz.D or dementia patient that cares to participate as I continue to expound on the fact that I am NOT the Lone Ranger - there are many of my peers who have found that they too are experiencing a 'rebirth' of their abilities -- they are hoping to find that common denominator among us all. I won't get the 'official' report for a week or two -- so we will see what they decide to put in writing!


January 4 . 2001

Brandon is still with us. Poor little guy having the yucks with this cold of his isn't making missing his Mom an easier. The puppies are certainly enjoying his visit! It is fun to watch them play together, rolling around on the floor, playing tug of war with the toys . . . and DD is especially happy to have someone that doesn't seem to tire of blowing bubbles for her to chase. We've had such lovely weather the past week or so, low 80's, that being outside in the sun has been part of our afternoons. Looks like the weather is supposed to change for the weekend though. We really need the rain here, the local ski resorts can't even make the man made stuff -- too warm, so they are really hurting this year ... and California too will be in drought conditions, water rationing this summer, if we don't get our share of rain soon. And of course one more reason to raise the electric rates -- no water for the hydro electric plants. Wade ! put up the security light this afternoon. A client came by the office and I did the reconciliation of his bank statements for the year. ( his books are always such a mess! He writes checks to himself, but doesn't want his staff to know the amount so will only put down .01 or .10 in the checkbook -- makes it time consuming to reconcile) He will have us do them, then try and do them himself and delete or unclear something I've already cleared, so the easiest way for me to get them done was to just unclear everything and start from scratch. - Glad it is the end of the year, I've already done this 3 times before. It surprises me that I can do this, when I can't even keep my own checkbook! LOL No, not really. This is a pretty straightforward task, not complicated just compare the numbers and clear them. Well, time to go watch the movies the neighbor brought over, Hollow Man and Gone in 60 Seconds.


January 3 . 2001

Rather rude awakening this morning. When I opened the front door to let the cat in both doors on Wade's car (parked in the driveway) were open, and so was the garage door. We surmise that the would be thiefs were reaching into the side compartment for the change there and hit the garage door opener which scared them off. Nothing missing. Guess it is time to do a better job of locking up -- we have really never had much concern here. Guess Wade is going to install one of those motion sensor flood lights as well. Sigh.......

We went and picked up our Grandson Brandon this afternoon. He is going to spend a few days with us. His mother's stepdad passed away and the burden of all the arrangements has fallen on her shoulders -- watching the little one is the best I can do to support her. Would have Maddie too, but she has her so spoiled she just cries and cries unless her Momma is holding her. He has a nasty cold (which I hope he doesn't share), so maybe some extra TLC here will help them both.

Rather a strange bit of discussion during chat today. Two of our members were very pleased to report that directly due to their persistence the local Alz. Ass. is going to now provide a patient support group. That is such Terrific news!! And yet another member in the St. Louis area reports that she is NOT allowed to participate in the support group there because she is single and has no caregiver. Now what kind of nonsense is this ??? You have to be married now to have a Alz.D diagnosis that is valid -- me thinks this particular chapter needs to be enlightened and accept change in their rigid structure for it may fit them but it does not fit the Alz.D communities needs


January 2 . 2001

Spent most of the day taking down Christmas decorations ... they sure went up easier than they are coming down! We may have to buy a potted pine tree for the aviary as the birds seem to enjoy perching in it, but are not set on demolishing it like the other trees we have tried. We checked into a stud service for DD (our long-haired dashound) we got quite a history and lineage lesson from the breeder we visited. Looks like we will probably wait until she is a little older for her safety. Stud fees are a bit higher than we thought -starting at $500! Also looks like that trip to the 'dentist' that I've been putting off, I need to act on. She still has three of her baby canine teeth -- so they are advising that they be removed. Of course I will see what the vet has to say, last visit he felt that they might work themselves out as much as she likes to chew. Apparently it is a common occurrence in the dashound. Wade is ready to head out again in the RV. Looks like we will be going to Death Valley Sunday for a few days. Last time we were there we were both riding motorcycles. He had Tina as a passenger and I had Jeff. We really roughed it then, slept in a tent which Wade had pitched in the wash since the ground was softer there. Sure enough it was, just really not the place to be when the thunderstorm hit in the night! It really was funny, a story that is told and retold. Think I'm safe this time in the RV


01 . 01 . 01

Looks strange doesn't it? Like some sort of binary code from the earlier computers LOL! The first day of the new year was pretty quiet around here. Rather a lazy day, with temperatures here in the high 70's it made for a perfect day for the Rose Parade. We will probably go tomorrow and see the floats close up as they have them on display for I believe three days. We have gone in past years.

I am always in awe of the creations when you are able to see up close that the cobblestone road is really split new red potatoes, and the trillions of individual flower petals that are pasted on to give color and highlights to a figures face -- it truly defies description. We will have to go early though the crowds get to be overwhelming too! We took the Christmas tree out and put it in the birds aviary. I really would like to have a tree in there for them but so far they have only destroyed what I have put in there. A ficus, a fiddle leaf fig, and a guava tree. They stripped off all of the leaves and smaller branches leaving only the main branches. These "Love Birds" are THE most destructive creatures!! I gathered up and laundered all the crocheting I have been doing for the "Stitches From The Heart" group. I have 30 hats and three blankets to mail tomorrow. I am trying VERY hard to catch up on my mail, and slowly am regaining those lost addresses and 'Favorite' links. Here's to a new year, a fresh slate, a chance for greater clarity into this confusing journey