To My Journal (Jan - June 2002)
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It’s good to be home again! We really did have a very nice trip, and think we have found an RV park we’d like to buy. It’s about 45 miles from Dallas Fort Worth, Wade is going to make an offer tomorrow. We really hit some very hot weather, 118 one day – the drought has left it’s mark even in the desert areas where saguaro cactus are falling over due to lack of water. In Alamogordo New Mexico, they were able to water their grounds for only two hours a week at the park we stopped at there. White Sands, nearby was really beautiful and the stealth jets looked like huge mosquitoes as they climbed in the air. We picked up our son and grandkidz Brandon & Madelyn in Houston and they joined us as we continued on to North Carolina to visit with Wade’s family. We got to see a new batch of chicks just delivered the day before – 11,000 of the little peepers in one house! They sure were cute. Went fishing one evening, Brandon was the only one who caught anything, and Maddie ended up falling into the pond – sure gave her Daddy a scare.
My computer mail box was overflowing 869 messages! So I am still trying to play catch-up with events and people. Really glad to have journal entries from Laura, I have been worried about her! Guess AOL is just giving her a hard time. Also the RV needs to be cleaned and readied for our next trip, which I think might be this coming weekend. We have friends in Northern California who have just gotten a new Harley and want us to meet them in Hollister for the motorcycle rally there this weekend.
Julie Meisner Eagle sent me a copy of the PSA (public service announcement) for the Memory Walk – I really think it turned out well, and particularly liked that my copy had a film overview of the whole shooting day and candid comments and shots – really made it very special for me. I am proud to have been asked to be part of this.
Tina brought our other set of Grandkidz up this afternoon, and we will have Jake and Ashton with us until Wednesday – we’ll spend the day at the beach and Tina will pick them up from there so that they will be home for the 4th of July. Her neighborhood has a huge block party – we’re invited, but it’s a bit too much for me. We’ll probably go to my cousin Barbara’s and be home before dark to make sure our house is safe from the fireworks.
Please be patient if you’re waiting for a reply from me, it will take me a bit to get caught up
Still working on making sure the RV has everything loaded that we will need, and one of Wade’s friends is going with us so I have had to do some rearranging to make closet space for him. Called the National and Orange County Alz. Assn’s. to let them know I would be unavailable for the rest of this month for my committee responsibilities.
Found out a very dear friend is having to undergo another bout of breast cancer, of course her first concern was for her husband who suffers from dementia -–think this time she really will need to think about herself first. My prayers are with you my friend!
Another day of laundry and last minute shopping. The Lakers won tonight the first game for the NBA championship --- poor showing though. Makes you wonder if they didn’t come back after half time and let the Nets catch up just to keep the series exciting and the fan $$$ it generates.
We had every intention of getting up and going to paint today but it just didn’t happen (smile!!). We were able to contact all the realtors who are representing the RV parks we are going to look at and made appointments to meet with them. – Wade printed out maps and distances, looks like we have planned well, our longest days journey will be right at 400 miles – about 6 hours.
We picked up Wade’s new glasses this afternoon, they look very nice, and he has admitted that they make the world a lot clearer!
A day full of errands , and getting the RV ready. Did grocery shopping for the trip, picked up prescriptions, made appointments to get the dogs groomed on Friday – I have no idea where the day went! !
Sun- We all slept in this morning, then went off to the Airport for breakfast. The kids got into the pool for a bit and we played dominoes in the afternoon. They left for home after lunch – I miss them!
Wade and I watched the Lakers game which they narrowly won – I am not sure whether they were a well matched series with the Kings, or whether the Lakers are just playing really lousy! Either way they have won the western conference championship and now will go on to met the New Jersey Nets for the final NBA championship.
Looking forward to not having to paint tomorrow, but I sure have lots of things I need to get done in preparation for our trip. We will probably go Tuesday and Wednesday to finish up on the painting before we leave. We only have a house and a half and a couple of garages so hopefully it will go quickly, we’ve really gotten slowed down with having to pull nails and move and trim plants from around the houses – Then too trying to get people to keep their cars away – somehow they just didn’t think the paint would dare to spray on their car despite the wind! Argh!
YIKES! What a project, we spent all day on just one room, sorting , tossing - Salvation Army is going to be very happy with me! Lol
Looking forward to having the snugglebugs in bed again with us tonight.
Boy I did not want to get up this morning, but had scheduled the DSL guy to be here between 8 and noon. Really felt exhausted today, when he didn’t show by noon we went out to lunch and wasted the day away! The DSL guy made it out later in the afternoon after calling to reschedule.
I was really tickled when Tina and the kids came up to spend the weekend. She is going to help me get started sorting through stuff to toss to get ready to move. She is so good at organizing and getting projects completed. I certainly am blessed to have her for a daughter. And delighted to have the kids here to spend time with.
Up at 6:30 and left to continue painting on the apartments, we didn’t get home till 8:30 --- LONG day for sure!
Well, this morning my internet connection is working with no problem, so I’ll get these last two days posted and also say HAPPY 99th BIRTHDAY to Bob Hope -- I too thank you for the memories!
We are off to paint for the day.
Well I think the DSL provider must have read my journal as I was trying to upload it, for it booted me out and I have been unable to get on since last night. Apparently we crossed wires with the tech, because he was supposed to be here between 4 & 8 and showed at 1:45 when Wade and I were at his eye doctors. They have apologized for the mix-up, but still can’t send anyone out till tomorrow. So maybe by Thursday I’ll be able to get this posted!
Wade’s eye’s have been getting progressively worse and we now have a pair of ‘store bought’ reading glasses in every room and in every vehicle. I finally convinced him to go get his eyes checked today since he will be doing most of the driving on our trip next month, and told him the eye strain would be much less. Sure enough, he was fitted for bifocals and they will probably be ready next week. I know he will be pleased when he sees how much the quality of his vision is improved.
Got a phone call from my co secretary in DASN Int’l Carole this morning. Poor lady , guess I should have yelled ‘duck incoming’ instead of ‘hello’. I sure am in a not nice mood, not something I generally share – usually I am able to better hide my moods – not today! When I tried to call her back to apologize the phone went unanswered (she probably has caller ID! LOL) So I called Mary in Oklahoma our chat hostess and asked her to pass on my apologies in chat. It’s always nice to talk to Mary, one of the nicest people that I have ever met. Sorry again, Carole that you got caught in the line of fire! She’s got a great idea for a handout for our DASN Int’l booth in Barcelona, sounds like a whole lotta work to me, but she is willing to volunteer to do it! She is one who really helps to keep our group focused and generates many good conversations – brilliant lady.
I was heartened to see Memorial Day observed this year, not as a mark of the official beginning of summer, but as a remembrance of those that gave their lives for the freedom of America. It just seems to have been overshadowed by the picnics, pool parties and the like in past years, 9/11 surely has made a difference, a rude awakening in all our lives.
When I got up this morning it was like a steamroller had run me over. Not an unfamiliar feeling but one I do try to avoid, it is the aftermath of one of my ‘catastrophic reactions’ as they have been called. Wade had an appointment with a real estate agent, so I stayed home and just piddled around doing laundry, made some potato salad and played cards.
My brother Les and my sis Gayla called in the afternoon – (sorry to have caused you so much concern! ) It sure was nice hearing from them. Not that they don’t stay in touch, they are always forwarding on jokes and stories. I’m sure they get frustrated with me ‘cause I don’t participate in the chain letter and pass it on mail, but I have never been one to do that. Les said he’d talked to Mom on her birthday and was concerned with her fading ability to converse, and noticed a slurring in her speech. I told him about her limp on her left side. It is not nice to see the progression of her Alz.D seemingly going more rapidly now.
I am going to call tomorrow about getting the DSL from SBC removed, it has given me almost as much trouble as AOL in connecting. I had complained so much about AOL, that Wade got me the DSL (still had to stay with AOL – the DSL has no email service, even though it was supposed to) – the problems are intermittent, but frustrating nonetheless. All the computer shows on the radio are recommending DSLEXTREME.Com with a $9.95 per month charge, think that is what we are going to try next! I’ll probably hang on to my AOL account for awhile because we can access our mail on the road with it. I am really so computer illiterate, I am at the mercy of my internet service providers!
I am feeling still rather ‘out of touch’, but much better. I know it will just take time.
I can’t believe this man is in my home, I can’t believe Wade has allowed him to come – I don’t care that he is blood. When I got up I took 4 Zanax hoping to control my feelings – how stupid! Now I was scared at my self – this is not good. When he finally moved his car from behind mine I left, I was sorry they were still here when I returned, otherwise I would have packed a bag and left – Wade wouldn’t allow that – He said he would get rid of him - but I did leave and meet with Tina I wasn’t going to stay a self made prisoner in my own home , I really did not want to share this with her but I was desperate, unable to control the overwhelming feelings. I can’t deal with the negativity , hatred, dread and overwhelming grief and sadness just the presence of this man brings out in me. We met at the Indian casino, halfway between our homes. It is so good to be able to have someone to talk to who understands for she knows this person. And agrees with me that this family bond of blood in this case is beyond understanding. We won $200 playing together on one of the large slot machines – that was nice. I reluctantly headed for home before dark with the assurance from Wade’s call that he was gone. This is one day I just want to forget – I hate being consumed and unable to control I have always been able to put on a good front, now I have no control.
Happy Birthday to my Mom who is 82 today… We went to lunch at Black Angus, which is my Mom’s favorite. I like going there too because the majority of seating is booth with big high backs, it really gives you privacy and you don’t hear everyone else’s conversation. When we got back to her place, neighbors had put birthday cards in her door. It was really cute to watch her go through the half dozen she’d received. She’d open each one up and read it aloud (it is GREAT to know that she can still read!), then she’d put it on the bottom of her pile – she went through them at least four times exclaiming over the message and the sender each time as if it was the first time she’d seen it. Quite lovely.
Happy Birthday to Dave a wonderful dear TAB friend in Oklahoma City he is 61 today! Congratulations! Hope the family spoiled you rotten you deserve it!!
The end of the day has sent me into a tailspin of emotions. Wade’s cousin called to say he was on his way, just before our bedtime. Wade is staying up to wait on him and descending feelings of doom overwhelm me. I have never in my life meant anyone so loathsome or destructive of peoples lives – his own and those around him he can ensnare. I don’t recall particulars, I don’t know if that is really good, for I can’t think through anything, I am just consumed with horrid emotions. I wish he would not come.
I find that I am becoming so very easily irritated and aggravated, I need to see the doc and see if we can’t do something before I explode or implode, one!
I finally finished cleaning the aviary. I removed over two dozen quail eggs, they are laying them but not sitting them. We’ve got one of our quails in our mini-hospital – the male was relentless and she was injured trying to escape his amorous attacks, so we decided to give her a vacation. It appears that she has a broken leg, I sure hope it mends for certain this way she cannot be put back with the others.
Disappointing game tonight with the Lakers – they looked terrible! Only good thing was half-time when we feasted on a bucket of steamers! Food does sooth my soul! LOL
Tomorrow is my Mom’s birthday, she will be 82, so we are hoping to take her out to lunch.
I discovered that I have been forgetting to upload my journal! I have started to type it out now in Word so that it helps in the correction of my spelling and grammar, but I've been forgetting to take that extra step and upload it to my website! Arrgh!!!- Time to put yet another sticky note on my computer!! LOL
Busy day of odds and ends – have no idea where the day went! We went and ordered the Direct TV system for our house and got an extra receiver for the RV. It came with a built in satellite system but we have been unable to use it because the previous owners took the receiver control box. One more thing to mark off my checklist completed before our trip next month! Slowly but surely!
Wade took off early to have the RV steps checked – we’ve blown a fuse, but can’t find the location. And also to get the oil changed. I had my first conference call with the “Working Group for Early Stage Issues” with the National Alz. Assn. I’m not real comfortable in this forum, but did participate. I have never been part of a conference call before, and it’s more than a little awkward when it is more than a one on one conversation – in person, or even in a chat forum I don’t seem to have the problem. But this is new to me, so I am sure with time I will become more comfortable and able to contribute better.
Got a lovely phone call from an Alz. Assn Director that I met in DC, she is from New Orleans. Janice called to talk about a new client and some alternatives for helping her – I felt very honored to have my opinion considered – didn’t take us long in DC to become friends, and I am tickled that she has called!
Took Wade back to the doctor this afternoon, the ear looks like the infection has healed, so the doc says if it doesn’t clear up within two weeks that he will have to go to an Ear/Nose/Throat specialist. Did not make him happy to say the least. I started working to clean out the aviary this afternoon, it will probably take me a day or two at my pace of late.
What a great day! We went out to breakfast at our local IHOP and visited with friends before heading out to where they were filming. It was a beautiful day, clear blue skies with white puffy clouds – so clear that you could see for miles! I love this kind of weather. Wade is still not feeling well, the cough has pretty much cleared up, but he is still unable to hear in his right ear – sure hope this isn’t causing any permanent hearing damage. He already has some problems because of his old job and of course the loud pipes on his Harley have contributed I am sure.
We were a bit early for our appointment since (for a change) the freeways were moving! (out here in Southern California they usually resemble huge parking lots) We were met by Zahid a charming young man who became my personal escort for the day. The waiting area was filled with all sorts of goodies - fresh fruit, sweets, cheese & crackers and an assortment of beverages. It wasn’t long before I was whisked away to the filming studio where I met Marc Conley the producer and Jeff Eagle the coordinating producer. It felt like meeting up again with old friends.
Next onto makeup, hair & wardrobe. Now, how wonderful is this to be fussed over having my hair and makeup done! Star treatment indeed! I can see how easy it is for the Hollywood stars to turn into ‘divas’. These ladies fuss over you, and like the fairy Godmother with her wand, turn you glamorous. (And if not really so, by their treatment and kind words certainly make you feel so!) Next was wardrobe! They had purchased a beautiful dark green silk blouse and rose toned floral scarf for me to wear – I think this is the first time I have ever looked at myself (especially lately) and really felt pretty. What magic these three ladies worked! Especially Jeri Sadler, the hairstylist. I have hair that is so babyfine, even when curled, poofed and hairsprayed tends to fall flat and straight – she is truly a miracle worker!! LOL
Julie Meisner Eagle the director came in and introduced herself while I was having my hair done. Like everyone else connected with this production, young , beautiful and charming. It really is an honor to have been asked to be part of this production, and with the “Gloria Jean” documentary that they did, the quality and heart of their work speaks for itself. --- Also during this time we could hear another PWiD saying his lines for the camera – just one , “I have Alzheimer’s”. He had the most delightful infectious laugh I have ever heard, it certainly helped to make me more comfortable about being next.-- On to the set!
I was seated on a couch with a blue backdrop. Julie sat to my left and directed me to say my line, “I have Alzheimer’s” straight ahead into the camera. Now they had really helped us with this by framing it with a red box and had a huge arrow pointing downward – no missing the spot! Well, except that everytime I'd say my line I tended to look over to Julie to see her reaction, instead of staring at my spot... sigh ... they ALL had such patience! But looking out there must have been 20 people sitting out there watching me! About the third time I said my line I realized that I was smiling, and as I am want to do when I am nervous, made the observation out loud about why was I smiling? This wasn’t something to be happy about! But that’s what you do when someone takes your picture, you are supposed to smile! Arrgh – a movie star I’d never make! Lol They had me say the line numerous times, using different voice inflections (couldn’t help but adding the questioning one! Lol) and turning different ways. Finally it was over! I hope I don’t all end up on the cutting room floor!
Afterward they made a gift of the blouse and scarf – oh, and I almost forgot, earrings too! And my hairdresser, Jeri, gave me her card and said anytime I was going to do another video she would do my hair – how special is that!!! Jeff gave us a copy of the “My Mom, Our Journey” (better known as GloriaJean) video. I am looking forward to seeing it, as yet I have only promoted it’s viewing (in DC) and fielded comments about it. And then we were invited to stay for lunch . . . and the fantasy continues on (much to my delight!) LOL
At lunch we were able to visit with some old friends who were also there for the filming – always an opportunity to share with others about DASN Int’l! We left shortly after lunch, sad that I hadn’t been able to connect with Laura Rice from the Northridge Alz. Assn. – but our schedules just seemed to be at odds today.
Talked with Linda Sheck and I am going to be loaning her our copy of “Gloria Jean” as she wants to have her staff and committees at the Orange County Alz. Assn. view it. She had watched it in DC on the TV airing, and agreed with me that it was a real shame that it was not shown in a conference or meeting room and made available to be watched by the group – sure would have made for a great discussion opener and cathartic sharing experience.
The afternoon was spent working more on a profile to use for the RV parks we are going to see, and in general enjoying the afterglow of a very magical morning!
Well no phone call from Jen in the morning – I kept worrying that I had given Joshua the wrong number. But, I was able to connect with an email later in the evening and it turns out that Jen had forgotten to call me, and that she didn’t think she wanted to do this. (I really was hoping to meet her and Aunt Em! – sigh another time for sure!) I am looking forward to the filming tomorrow as many friends will be there that I don't get to see very often. Also, I am looking forward to meeting Jeff and Julie Eagle. I've talked so much to Jeff of late I feel like we are kindred spirits in our quest to do what we can wherever we can to find an end to this horrid disease. We also share the same love and respect for David Hyde Pierce, who gives so unselfishly of himself. Not your typical 'Hollywood Star', but a kind caring honest man.
Pretty much a lazy day around here – I joined Wade and vegged out in front of the TV set for most of the day. And of course watched our Lakers get beaten.
There is a great article in the Alz. Assn., Massachusetts chapter newsletter. If you go to www.alzmass.org, click on Newsletters, then the latest edition, you will find an article called “People With Dementia: The Bright New Face of Global Advocacy” (Thanks for the heads up on that Dr. Raushi!)
I don’t know whether or not you have ever ‘voted’ for my site on the Top Sites banner on this page, but if you haven’t it may well be worth your time, as you will be re-routed to the Top Sites page that has more than 150 different sites all dealing with different aspects of Dementia – go visit! There is wonderful stories, information, poems and prayers that are shared there.
Wade was feeling much better this morning so we decided we could make lunch in Carlsbad after all. Jake was pleased with his new ‘cloak of invisibility’, and we spent a pleasant afternoon visiting. I sure do miss not having them live closer - I really do miss having our daughter Tina as a close friend, distance has changed that, which of course was inevitable. And Jake and Ashton always make me feel like the most special person in the world, their hugs are magical! We watched a video of Jake at one of his first gymnastics classes – he is so naturally talented and strong, he did an iron cross and an inverted handstand on the rings. She had also taped the salute to the military that he participated in, in San Diego with his class using signing to “God Bless America” and “I’m Proud to be an American” they looked so cute, and serious!!
As I was checking my email before bed I noticed a familiar name on my buddy list – I have finally been able to connect with Jen & Josh. Well, Josh really, Jen is in bed. He seems to think she will be interested in being part of the commercial. I’ll know for sure in the morning when she calls me, then I’ll turn her name and contact information over to the producers who will certainly have to scramble to get them a flight booked! I am so excited about meeting her and her Aunt Em in person. She and Josh were supposed to have come to the DASN Int’l meeting in Montana last year as a last stop on their honeymoon. But they had to cut their trip short as the whole wedding and honeymoon excitement had become just a bit too overwhelming for Jen. I sure am looking forward to her call in the morning!
Wade is still feeling unwell, and spent the day on the couch or in his lazyboy. I spent the day on re-dial (again) LOL trying to reach Jen. I have reported the number as bad, but the problem still has not been resolved for all I get is a busy signal.
As usual it seems I am always doing laundry, and I spent a good part of the day playing cards on pogo.com. Then watched the Lakers win their playoff match with Wade in the afternoon. We were supposed to go down to Tina’s tomorrow for lunch and give Jake his birthday gifts – doesn’t look like we will be going.
One of the producers, Marc, called and gave me directions to the studio for Tuesday. He said they are still keeping their fingers crossed for Jen to be able to come. (Me Too!)
Put a call into National early this morning and spoke with Laura about the workgroup. They have also asked Thad Raushi (another DASN Int’l member) and Frank Carlino a very active PWiD and advocate that we met in DC to be a part of this conference call group. I am really excited some old and new friends are also part of the group – Peter Braun, LA Alz. Assn. Exec Director, Jed Levine, who was the moderator at my DC workshop just to name two.
Wade hung onto the covers this morning, his ear was really giving him problems all night, so despite his protestations I made him an appointment for the doctor. Seems the cold he’s had for the past two weeks and the coughing caused the ear infection. Well he should be healthy soon - $89.00 in prescriptions! He keeps bellyaching, but I remind him if we hadn’t gone to the Dr. we would probably have had to go to the ER during the weekend which would have been a whole lot more!
Jeff Eagle called again while I was out getting Wade’s medicine. Seems they really would like to try and get Jennifer here for the commercial and will fly her and her hubby Josh or Antie Em here for the shoot, that is if I can reach them! Mary helped me to find their last name - I had their address, but that did little good without their last name! Their phone number has been busy all day, and I haven’t seen them on the Internet. I did send them an email – sure hope we connect! I guess it is in the hands of the fates.
I was able to get into chat for a bit tonight and was really glad to see Geri again – she has been so busy with selling her home and downsizing before purchasing another that she hasn’t been online much.
This evening I made a bag for Jake’s cloak. I used the leftover black satin and made it reversible by lining it with a purple velvet. Took me a very long time and lots of seam ripping – even the basics of sewing have become very complicated for me – but I was determined! My persistence paid off, it didn’t turn out half bad! LOL
Thanx Sandy for visiting and signing my guest book! Your kind words are appreciated!
We got up early and headed over to the apartments to continue painting. Wade’s cough has gotten worse and now he’s complaining about his ear – guess I’ll haul him into the doctor tomorrow.
Came home to a nice message on the answering machine from Laura Wilson at the National Alz. Assn. asking me to be part of the “Early Stage Issues” workgroup. She said she’d sent me an email – well I’ll be darned! I just checked the business cards I had in Washington – Arrgh!!! They have my wrong email address on them – half my home page half my email! What an idiot – that’s what I get for doing things at the last minute and not having Wade double check them. Hmmm Maybe that’s the reason I have heard from none of the contacts I made in DC?! Well at least Laura was persistent! The fates at work!!
Well seems Akila from the Los Angeles Alz. Assn. didn’t have any trouble finding my email addy, but not a phone number! Lol I have been asked to participate in a commercial filming for the upcoming Memory Walk. She faxed me over the particulars! Wow! This is too cool! The folks in charge of the shoot are Jeff and Julie Meisner Eagle the one’s who made the MSNBC documentary last month Alzheimer’s: My Mom, Our Journey (www.gloria jean.org). Sounds like a great format . Jeff called me later in the evening, what a charmer – lol. Anyway I told him about DASN Int’ls youngest member Jennifer now 25, he was really surprised – and disappointed when he heard she was in Florida and not local. They have also invited another friend of mine here in Orange County, Norm Anderson so I guess we will try and carpool to the shoot.
Off early, painted all day. Came home and did some laundry, spent the evening finishing up Jake’s cloak – I am one pooped puppy!
There was a very nice invitation from Sue Tangelo the Ventura (Calif) Exec. Director on my email asking if I and Morris would be interested in speaking at their conference on the 8th of November. I wonder if we can get away with giving the same presentation we will be using the next week on the 15th in Orange County??!! LOL
May 14, 2002
Happy Birthday to our son Jeff who is 31 today! He lives in Houston with his family which includes two of our grandchildren, Brandon (4) and Madelyn (2). We are looking forward to seeing them next month. We will are going to spend some time looking at some potential RV parks to buy. 4 in Texas, 1 in New Mexico and 1 in Louisiana. Then we will head on to visit Wade’s family in North Carolina.
Wade still isn’t feeling too well, coughing a lot, so we decided to postpone starting the painting on the second set of apartments till tomorrow. I spent the evening working on the cloak for Jake, so frustrating, seems what was easy before with sewing is so very complicated now…sigh.
May 13, 2002
Happy Birthday to our grandson Jake who is 6 today! We are going to skip the birthday celebration with all his friends at a party Saturday and will opt out for a quiet lunch with him on Sunday. I’ve gotten him a few things, but after talking with him today have decided to make him an ‘invisibility cloak’ like Harry Potter’s to surprise him.
The usual laundry to be done today, why oh why did I think I could make a cloak?! This is frustrating!
We left the river about noon. What a lovely weekend – the weather was perfect. Our neighbor Jason joined us on Saturday morning and brought his ‘Sea Doo’ with him. He and Wade had quite a time! In the evening we had BBQ steaks then went over to the pool area for pool volleyball and karaoke. This morning both were too sore to even think about taking it out again! Lol
I called my Mom when we got home, poor dear she was so confused, wasn’t even aware that we had sent her flowers. I had messages on the phone from Tina and Jeff wishing me a Happy Mother’s Day.
We spent the day completing the work on our vacancy - touch up paint and floors today. The new tenant will be in tomorrow.
I spent some time on the internet trying to catch up with friends lives through thier journals. One I still cannot get through is the woman who created this site for me, Resa. I wish I knew how to insert her link her but don't, so I hope you will go to my links page and visit her.I have been missing her in chat, and like everyone get caught up in my day to day life, and although I think of her forget to connect. Wow, she has been busy creating, designing a professional writer she has so much information availble on her site, it really would be of interest to anyone! I am going to try and do some more reading before I write so am a bit more up to date on her doings!
I spoke with two of our DASN Int'l members who are in the midst of moving out and divorce - I do so wish I could be of more help. We were discussing last night that those of us in DASN have worked so hard at our advocacy I believe because we are reinventing the source of our self-esteem and sometimes it is totally misunderstood how we could have such strength of conviction and be so clear and yet claim to be in the midst of a dementiing illness - they cannot see the brains depletion just see the strength of our actions. Sometimes I am not sure early stage detection, because the perameters are so confusing, isn't the source of even more problems with of the lack of understanding.
A quick thank you to Brian for sharing a most excellant presentation ... and you said you were the shy one!!! lol
Our grandson Jake is going to be part of the welcoming home ceremony tomorrow in San Diego for one of our fleet returning from the middle east. His class is going to 'sign' God Bless America -- sounds like a big to-do!
We are heading out in the morning for some R&R. Going to take off in the RV for a few days over to the Colorado River. We should be home Monday.
Happy Mother's Day!
Don't worry the world is not going to end today, it's already tomorrow in New Zealand!"
This week home has gone very quickly. Wednesday we vegged, caught up on the mail. Thursday and Friday it was back to the apartments to work on the painting. Saturday, Sunday & Monday I spent all day doing laundry and transcribing the PWiD Focus group. Wade washed the motorhome Sunday so I also defrosted the freezer. Tuesday we were back to painting as we have a vacancy – we are pleased to say our tenants are buying their own home.
Today we storm Capitol Hill. These last few days have been cold and rainy, but today it was beautiful blue skies.
I had an opportunity to talk with Paul McCarty this morning, he is the Director of the Southeast Region. Again it is nice to connect with someone who has the same excitement and encompassing passion for the inclusion of PWiDs. We recapped a bit of last nights conversation (oh good! It really wasn’t a dream and all in my imagination!) seems Paul has been crusading on behalf of patients for a number of years when it certainly wasn’t fashionable. He said he really liked the term PWiD, and shared with me some 5 years ago he had tried to coin the term PWAD (Person With Alzheimer’s Disease) figuring it would catch on like Quad for Quadriplegic. Our conversation was all to brief but energizing! Off to conquer the Hill!
We took at taxi to the Dirkson Building and gathered with everyone else for the Congressional Hearing. We stood over by the press table and I am disappointed to say only 3 of the 15 press packets were claimed by the press.
The hearing was presided over by Senator Tom Harkin, Chair and Senator Arien Specter, Ranking member. Testimony was given by Dr. Richard Hodes, Director National Institute of Aging, Orien Reid, Chair Board of Directors, Alzheimer’s Association, David Hyde Pierce, Dr. Marilyn Albert, Chair Medical and Scientific Advisory Council Alzheimer’s Association, and Carol and Gene Gratz , a family from the Alzheimer'’ Association East Central Iowa Chapter. (all of the testimonials can be read on the alz.org website) Carol and Gene particularly captured the heart as a young family caught in the throes of this disease. He is but 57 and they have an 11 year old son. She has taken a 3rd shift job so that she can be with her husband during the day, help her son with his homework and prepare the evening meal before she leaves for work and leaves her husband in his son’s care. A very emotional testimony.
On our walk over to the congressional offices a few blocks away we joined step with Rose Miller with the Delta Sigma Theta Sorority. She was so enamored with my 4 generations picture and wanted to know if she could buy a copy – how flattering!
We met up with members of the Orange county group, Judy Dickenson, Fay Blix and another lady whose name I don’t recall (sorry) in George Miller’s office where a meeting was already underway with his aide. Then we headed over to Ed Royce’s office for a noon appointment. After waiting for 45 minutes it was obvious he was a no show, but did appreciate the hospitality of his legislative assistant, Darrin Schrader.
That was the end of our appointments so we thought we would catch the trolley tour, but ended up walking to the train station, catching a bite to eat and taking a taxi back to the hotel. I met up with Rose again where we were to turn in our conference evaluation so gave her the 4 grnerations picture.
I spoke with Kate Novak who moderated Morris' session (my goodness Morris would have blushed profusely at her compliments - she was in absolute awe of him!!!) in regard to the National web site, our problems with chat there etc. and offered her our input, this was a good converstaion and she reaffirmed that we would work together on it.
By the time we got to the airport it was evident that the last few days were finally taking their toll on us both, in spite of the fact that I almost caused us to miss our connecting flight out of Chicago – we were home safe and in bed by midnight.
Monday April 29th continues
After dinner there was a presentation of the Maureen Reagan Outstanding Advocate Award. Among the nominees 12 chosen from 100’s of name submitted by chapters nationwide, was Frank Carlino, a PWiD and passionate advocate,” Let me fight before I fade.”, from the Mid-Hudson chapter in New York. The award went to Mary McDonald from Arizona chapter, an active member for 15 years.
After dinner we changed into warmer clothes and loaded into buses to go to the Lincoln Memorial for a candlelight vigil. Was very chilly and windy, but the rain stayed away.
We had moving testimonials shared by two people and Miss Texas sang, My Heart Will Go On as we lit our candles. As she started the first verse a flock of ducks flew overhead, it felt like a sign that those departed were soaring and joining us in spirit. Few if any remained dry-eyed through her beautiful rendition. Then for us it was back to the hotel for the night.”
This was a day in which I wish I could have had a tape recorder with me to record exactly what people said about my, and Morris’, presentation. From the moment we hit the elevator in the morning people were wanting to talk with me or make comments about how the halls and elevators were abuzz talking about our presentations yesterday afternoon and evening. I was so busy networking that I missed most of the morning sessions.
I forgot to put in my journal yesterday that Sandy Matheson, the executive director of the Chattanooga TN Alzheimer’s Association, invited me to speak there in the fall. You couldn’t receive a compliment much nicer than that! And I do look forward to continuing my efforts at advocacy for PWiDs. She also was unaware of Larry (from TN also) having the 1st AD Guidedog officially registered with Safe Return as well. Since I had passed out all the copies of Larry’s article I will be sure to forward her one when we’re home.
I shared a lot of my time with Kim Holbrook who is a Dementia Educator in Wisconsin. She has her own advocacy support network -- IDEAS= Intergenerational Dementia Education Advocacy & Support – Our hearts speak to the issues on an equal footing. I really did enjoy sharing with this new found friend.
I sat with Morris and Andrea in the afternoon workshop. We chose to attend ‘Driving and Dementia’, obviously an emotionally charged subject. I kept poking Morris every time the term carepartner or PWiD was used. And was very pleased when one of the presenters thanked me during his talk for clarifying and making him cognizant of the word carepartner. The opening speakers were Diane and Richard Paradis, PWiD and carepartner respectively from Virginia Beach, Virginia. She gave a very passionate plea and testimonial about why she should be able to retain her driving privileges and not have them arbitrarily removed. Ruth Gay the Director of Public Policy & Advocacy, Northern California Chapter, did a very good job of presenting the TAB and Alzheimer’s Association stance. There are no easy answers here. I think it was the consensus that there needed to be an evaluation policy and testing mechanism similar to what is now available in some hospitals in their rehabilitation units. All the PWiDs that made comments also indicated that they would be very agreeable to yearly re-evaluations.
This evening was incredible! David Hyde-Pierce tonight’s host for the dinner arrived about half hour before – we shared a few words and of course a hug! He is a very gracious person, and doesn’t grandstand his celebrity, rather he took to the halls and made himself available for pictures.
Before dinner I spoke with the 'heavy hitters' (at least within the US) of the National Alzheimer's Association who are firmly behind us. I am speaking the likes of Orien Reed, National Chairperson for the Board of Directors, Dennis Ravell (Maureen Regan's husband) boardmember, Paul McCarty Director of the Southeast Region & board member ....oh! and.... darn I can't find the others cards!!! We really owe a HUGE thank you to Peter Braun (Exec Director of the Los Angeles chapter) for steering these people into our presentations and lobbying so heavily for DASN Int'l - as Dennis Ravell said we had made a true convert of him, enough so that he went directly to Orien Reid after the presentations and said we NEED these PWiD on our boards NOW! I found out that occured on Sunday - tonight I have confirmation from more than one of the board members that we had been the topic of discussion in informal meetings and it would NOT be tabled for discussion but be implemented immediately and a STRONG recommendation issued to all chapters for them to immediately follow suit! I really wish I had a tape recorder along for these comments! They are recommending Frank Carlino and asked if I would be interested in being on the National Board as well - the more PWiD voices the better! I left so elated from this table's discussion to wondering if I had lost my mind, and had totally misunderstood, for another involved in the conversation completely took the wind from my sails "I don't know how you manage to always get your way" - " They can't make the chapters" here I am overjoyed for the PWiD populace of the US and now it is made a personal thing, like I should apologise. Sheesh!! Luckily before the night concluded another National Board member spoke with me and reaffirmed their positive reaction and inclusion of PWiDs.
I must align myself with builders! I'll share with you here a story so you'll understand my philosophy in part, and I feel the philosophy of DASN International....it's a Michael Josephson radio commentary...
An unknown poet penned this verse about builders and wreckers:
I watched them tearing a building down, A gang of men in a busy town. With a ho, heave, ho and a lusty yell They swung a beam and a wall fell. I asked the foreman, "Are these men skilled? Like the men you'd hire if you had to build?" He laughed as he replied, "No, indeed. Just common labor is all I need. I can easily wreck in a day or two What builders have taken years to do." I asked myself as I went away, Which of these roles have I tried to play? Am I a builder who works with care Measuring life by rule and square? Or am I wrecker who walks the town Content with the labor of tearing down?
Lots of people, me included, have become adept at pointing out flaws and highlighting unseen risks in a manner that deflates ideas and egos. We don the robe of constructive critic even when there isn't much that's constructive in our criticism. When others get excited about a new idea, it's more likely we'll burst the balloon than help launch it. If we're accused of being negative, we say we're just being realistic.
It's easy and perversely gratifying to be a sideline cynic. It's harder to use our critical analysis not as an end point, but a beginning. A builder sees problems as challenges and seeks solutions; a dismantler sees problems in every solution.
A builder sees flaws and tries to fix them; the dismantler sees flaws in every fix.
We need more builders.
I decided to continue taking the Zanax, at least through today! The morning started out with a continental breakfast and opportunity to meet new people. Then we went on to the Presidential Ballroom for the ‘Roll Call of the States’. Every state had their opportunity – albeit brief – to tell their major accomplishments of the year. I think what stands out most to me were the number of multi-lingual outreach programs going on – very heartening. I wasn’t able to stay for the keynote address by Terence Smith: A Billion Ways To Make a Difference. I was in the room but didn’t hear a word, worrying about my upcoming presentation, I found myself focusing on the man in the row behind me with an adorable puppy -- so I excused myself to regroup.
Wade and I went on to the room and I was able to get my information written on the chartboard – specifically during my presentation I mentioned PWiDs (People With Dementia) and TABs (Temporarily Able-Brained) and crossed out caregiver and replaced it with care partner – I wanted a visual reference so they would remember!
Jed Levine (Director of Programs & Services NYC chapter), was our moderator and certainly had a calming effect. Nellie Vega a PWiD and advocate from the Mid-Hudson chapter was up first so that was great too!! A very passionate lady she gave an excellent talk. It is interesting that she has gone and found herself another job with a food store and that they are supportive and understanding.
Looking around the room I found comfort and reassurance in friends that were in attendance (and surely a good omen – the man with the puppy!) not to mention Wade – where would I be without him ? ! He is so supportive, we have come a long way in 5 years! I wonder if those friends are aware of how important their nods of encouragement, smiles and thumbs-up subtly shared mean?
Well I managed to make it through without fainting! Lol No, I wasn’t concerned about that really, but I was concerned about not being able to read my talk. In the past I have '‘shot from the hip and spoke from the heart'’ since I have mainly been involved in workshop presentations – here I was asked to talk 15-20 minutes. Sometimes when I look at notes my mind goes totally blank and I can connect with none of the images on the paper – so this time I did practice reading, seems to have helped, although I didn’t feel it flowed as smoothly as it should have.
The questions following our presentations were very encouraging as the terms “PWiD and carepartner” were used.
Kathy O’Brian (National Alz Assn) was there and shared that as a direct result of our DASN Int’l proposal to the Alz.Assn. (which was one of my workshop handouts) that they had formed a task force (Hmm wonder why no DASN people were asked to be involved?) Frank Carlino, a PWiD from NY (and also a nominee for the Maureen Reagan Outstanding Advocate Award) echoed our (PWiD) need to be recognized and included within the infrastructure of the Alz. Assn. in making decisions . Linda Sheck (Orange County CA exec director) shared that they had linked DASN Int’l to their website under ‘People With Dementia’. Peter Braun (Los Angeles CA exec director) seemed to summarize the comments in that we should all be working together and sharing successes – he is a friend and a VERY global thinking man. What we do that is of benefit should be shared and made available for the benefit of all.
As we waited I the hallway – catching my breath! Lol – I met up with the ‘man with the puppy’, turned out he is Dennis Revel, Maureen Reagan’s husband. Such kind words he shared about my talk, and said I had made a convert of him. The recognition and appreciation were very welcome, especially from him, as I held Maureen in very high esteem. Another gentleman made a special point of telling me he really appreciated me clarifying the use of the term ‘carepartner’ and would make it a regular part of his vocabulary and make sure his chapter followed suit.
Morris Friedell’s (my fellow DASN Int’l member speaking at this conference) talk was concurrent with mine so we were unable to attend one another’s – but it was clear from people’s responses that I was overhearing at lunch that he made a huge impact.
After lunch we got our pep-talk preparing us for our visiting of the hill and our congressional leaders. After that we broke up into individual state groups to finalize who would be seeing who.
Our Orange County group met at Georgia Brown’s for dinner. I had a wonderful ‘Frogmire Soup’ – didn’t have an ounce of frog in it, and a very scrumptious house specialty dessert made with Jack Daniels. I was so wound I asked Wade if he wouldn’t buy me a scotch at the bar before we retired – would you believe $28.80 for our two drinks!! YIKES No way I’d have a chance of being an alcoholic here at the Hilton! LOL
What an exciting four days the Public Policy Forum in Washington DC was.
We left home at 4:30AM (UGH!), the flight out of John Wayne was smooth going, and being as I had the window seat I enjoyed watching the world unfold beneath me. I have become very apprehensive, not about flying but about being so enclosed, I have become overwhelmed and obsessed with being trapped and unable to leave in the past causing an anxiety panic attack on a short 45 minute flight. So now I take Zanax and make sure I have the window seat. At one point I recall feeling a slight sense of panic welling up as we entered the clouds, but, as we reached the ceiling and could look down upon them to me it was like gazing out on the grounds of heaven, then as I looked at the shadow our airplane made on the clouds it became encircled by a rainbow. Surely a sign I was safe encircled by His promise.
We met up with part of the Orange County group for a quick bite to eat after settling in at the Hilton. Linda Scheck the executive director of the chapter was our hostess, she is the one who has made it possible for Wade to be with me, and also for my being able to stay for the entire conference – National, who invited me to speak, would only cover my fare and one days expenses, so Linda and the Orange County chapter picked up the tab for the balance! Also joining us were Morris Friedell and Andrea Oden fellow DASN Int’l members. It was wonderful to connect with Morris again – he looks marvelous! It is obvious to all the effect that Andrea has on him. This is the first time I’d met Andrea face-to-face even though we are fellow DASN Int’l members. I took an instant liking to this no nonsense self assured lady.
After eating we loaded up on buses taking us on a Washington After Dark tour. There were a few showers, but it didn’t seem to dampen the enthusiasm and enjoyment for anyone. The FDR Memorial was beautiful, the Korean and Viet Nam Memorial haunting. At the Lincoln Monument I was glad to find an elevator to take me up, I don’t believe I would have been able to make it up (and down) all those stairs! Lol Very impressive to feel the enormity of his presense. Surprisingly I was able to get a good nights sleep. I thought for sure I would have been up worring about my presentation for the next day. I do believe that Zanax is a miracle drug!!
I am still trying to gather together all my thoughts and notes from these past glorious days, for now I would like to post the workshop presentation that I made on advocacy and another talk that was given by a fellow DASN Int'l member in another workshop
I share a common bond with you all and the rest of the world in that what is adverse in our lives propels us into action. I believe this is universal.
We face our daily trials, work for solutions, then get back on the merry-go-round of our lives -- until we are faced with an insurmountable crisis. For me the diagnosis of probable Alzheimer's Disease, was that crisis.
Alzheimer’s was a living death sentence. I was sentenced to a daily loss of self, social standing and all the abilities I had taken for granted in the past. Already I had suffered so much loss that getting a diagnosis was imperative. No possibility of hope was offered for any type of future or meaningful life between diagnosis and death.
I'd like to share just a simplified brief outline of my journey from apathy to advocacy.
Many confusing and frightening occurrences started to become regular enough to cause me to go to our family doctor when I was 43, in 1993. They couldn’t be wished away nor ignored. When all the medical reasons that he could find were ruled out, the doctor proposed a brain biopsy to check for dementia. At least I had the presence of mind to refuse that! Guess he thought he’d just do these random drilling sites since he had given me no neuropsychological testing.
I kept my concerns to myself, not sharing them with my family – I became more and more adept at covering up and making excuses for my lapses.
I actively sought my diagnosis in 1995 when news was shared by an Aunt that my uncle had passed from Alzheimer's Disease. It was as if a light bulb went off in my head; now what had been happening to me might be explained in a similar way, and the peculiar behaviors of my Mother and an Aunt might be explained as well. I knew nothing about Alzheimer's disease at that time. Being a new grandmother I was afraid of endangering my granddaughter. So I had to know.
I was 45, my husband 50; we were a long way from retirement. He had switched from the corporate world to begin a consulting firm in which I was the "word monger.” I wrote business plans and the like. But I had found it increasingly difficult to be of any help.
I read a newspaper ad looking for volunteers to participate in anti-dementia drug studies. The outline they laid out as to symptoms seemed fit many of my concerns. So I called them. Like my doctor, they said I was too young, but agreed to see me and do the testing required for the research study.
They ran a full battery of neuro-psychological testing and bloodwork. As I passed the criteria for possible dementia they asked for an age waiver so that I too could be included in their studies. Two years later I went through a similar testing battery at UCI and had a MRI which confirmed dementia – I have been followed there for 4 years.
I feel very lucky to have become involved in the anti dementia drug trials at Pharmacology Research Institute or PRI, in Southern California. Obviously a patient-oriented, caring research facility, the staff insisted that we contact the Alzheimer's Association for support and further information on dementia.
This was to be my 1st step in changing from apathy to advocacy.
After being part of the Early Memory Loss group, I realized the value -- and my need for -- support, empathy and understanding, and yet I was frustrated by the lack of services and information available for early stage people with dementia or PWiDs. Pronounced to rhyme with kidz (that acronym was coined by DR. Morris Friedell, a fellow DASN international board member, who is here presenting in another workshop).
My daughter, dismayed at my apathy and depression spent the better part of an afternoon on the phone trying to find a support group for me. After a dozen calls she finally was referred to a ‘wonderful young woman recently diagnosed who would be able to provide tremendous support’. - Her excitement soon turned to a fit of the giggles when she revealed that wonderful young woman was me. She had been referred back to the very person for whom she was seeking support!
I had started keeping a journal of sorts about my dementia and shared it with Selly Jenny. (Selly is the founder of Memories in the Making, an art and self expression program for PWiDs. Selly didn't give me a bit of sympathy. Her comments?
"So what now? It's obvious you are very angry - are you going to continue to whine and be a victim?"
That second step towards advocacy would be better described as a boot to the backside!
My husband made a huge third step possible when he set me up with the Internet. Timid at first, I found a wealth of information about dementia and many support groups for Carepartners, but there were none for people diagnosed with dementia. The carepartner boards were frightening as they dealt mainly with the problems of later stage PWiDs. This was an extremely traumatic time, although the effect of the disease was relatively subtle and sometimes almost imperceptible to others, for me it was so totally life altering. My inability to adjust without support was devastating to myself and my family .
Laura Smith, a PWiD living alone in a rural area of Montana, then contacted me. She had formed an online community called “Coping With Personal Memory Loss.” There I found understanding and support and a lot of other angry people too, also struggling with the early stages of their diagnosis, and very frustrated with the lack of services and information available for the people with dementia themselves.
The fourth step towards my advocacy was the realization that in helping one another, we could turn lemons into lemonade, and, by golly, we were going to set up our own lemonade stand!
A group of nine of us with different illnesses causing dementia branched out from Coping With Personal Memory Loss to form a nonprofit corporation, the Dementia Advocacy and Support Network or DASN. The group formed to advocate specifically for services for early stage patients and their care partners. That was October of 2000.
Since then DASN has grown into DASN International, with a membership of over 160 in eleven nations worldwide. Our youngest member diagnosed with dementia is but 25 years old - definitely NOT an "Old Timer”! Her dementia is hepatitis-related. We at DASN are living history. The first generation of people with dementia to have received the new cognitive drugs like Aricept, Excelon and Reminal. As such we are the new face of dementia.
The majority of our membership have been diagnosed with various forms of dementia and the remainder of our membership is comprised of those temporarily able-brained individuals, or TABS as we refer to most of you, who support our principles, beliefs and values (brochure in your packet) Our primary means of communication are the Internet, our website, twice daily chats and an email community which provides anonymity, time to interact at our own pace, and safe support for more complex and intimate issues. The DASN International board of directors has met face-to-face twice in the past two years. Being international, the location of our office has been a problem, so we tell the world we “telecommute” for board meetings.
Time is irreplaceable with an early stage PWiD both because they now know that their lives will be shorter and of less quality than they hoped, and because function lost prior to treatment can never be wholly recovered. Diagnosis and treatment are a race against time.
The odyssey through the medical establishment begins when you realize something "isn't right" with yourself. In spite of that, diagnosis can take up to a year, sometimes more, as you go from one doctor to another trying to find someone who will listen and not just summarily discount you because of your age or vagueness and inability to articulate the confusing changes occurring.
The medical profession needs to better educate general practitioners and the public at large about the early warning signs of dementia and about the neurological terms needed to describe the “problems” we experience. The general public now knows about the language of the heart. We know about systolic and diastolic blood pressures, arteriosclerosis, cardiac arrhymias and the like. Equally, we must be taught about neurological dysfunction. Agnosia, aphasia, apraxia, short and long term memory loss are not difficult concepts, but if one does not have the language to talk about one’s experiences, one is rendered effectively mute, and diagnosis is often delayed.
As one DASN International board member in Australia puts it, “Treatment delayed is treatment denied” because the research clearly shows that when treatment is withheld even for a few months, the lost function is never fully recovered. Finding the right specialist and getting appropriate treatment seems never-ending and frustrating as one struggles with denial oneself, often becoming more depressed.
The best hope for early-stage people is early detection, immediate and aggressive drug intervention, early stage services and an empowerment approach. Rehabilitation, self-monitoring and management, and vocational or recreational therapy must be elements of the patient’s tool-box for coping.
Counseling for grief and loss are also of enormous help in maintaining quality of life. Long before the diagnosticians detect our deficits, those of us in the early stages are well aware of the losses we have endured, despite our inability to describe them in ways practitioners can recognize. Delaying the diagnosis or delaying telling the early stage patient is not a kindness, any more than avoiding discovering and treating termites in the foundation of a house!
Early detection enables us to receive drug intervention. The drugs available now help to forestall the dementia's progression - many of us in DASN International actually refer to ourselves as the "Aricept Generation," having maintained a sound level of cognitive ability since starting on the drug when it became available 5 years ago. As well, drugs are available that can help us deal with apathy, depression, aggression, anger outbursts and other unacceptable social behavior.
PWiDs in DASN Int'l have told me that until getting into stabilizing medications, they would not even consider seeking any support, be it privately with a counselor or in a support group. Perhaps physically, as well as mentally, they were not feeling well enough to socialize and talk to others as apathy and social withdrawal can be significant early symptoms of dementia stemming from frontal lobe damage.
We at Dementia Advocacy and Support Network International are channeling our frustrations into empowerment and a sense of accomplishment. Educating ourselves and doing our best to affect changes for PWiDs worldwide. Our motto is "Think Globally - Act Locally."
Even in it's infancy DASN International has made a worldwide impact. In your packets you will find two proposals made by the DASN Int'l membership to Alzheimer’s Disease International (ADI), an umbrella organization for the Alzheimer’s Association in the United States and in sixty-four member nations worldwide. The first was presented just prior to ADI’s world conference in October of last year in New Zealand.
ADI has praised our initiative and formed an international working group to which two DASN International members were appointed for further discussion on the implementation of our proposal.
The second proposal was made to the National Alzheimer's Association here in the US in February. DASN International board members were pleased to be able to meet with Kathleen O'Brian, National Vice President for Program Services, and executive members of the Orange County and Los Angeles chapters to discuss its future impact on the Alzheimer's Association and its chapters here in the United States. We look forward to our continued working relationship with the National Alzheimer's Association and its many chapters.
As I said initially, "Adversity propels us into action.” For me my action has become a quest, my Holy Grail. There has been a continuing theme that keeps me motivated and that theme is preserving the health of my family (share four generation picture.) This is my daughter, my granddaughter and my mother. I am honored to say our picture has been featured in the Orange County newsletter, Memory Walk brochure and a membership invitation.
My quest is to see a cure and a vaccine for prevention. The legacy of Alzheimer's Disease needs to stop with my generation - this is an inheritance that should no longer be shared.
Also with my PWiD advocacy, I hope to make the way of those diagnosed after me easier and better supported in early stages within the Alzheimer's community.
I would like to say that my advocacy efforts locally and globally are supported by people and organizations that I consider carepartners in this journey, people who share my philosophy in regard to Alzheimer's Disease.
Carole Mulliken, my friend , carepartner and DASN Int’l. co-secretary who graciously shared thoughts, ideas and helped to clarify this talk.
And without the continued support and generosity of my carepartners at the Alzheimer's Association, and in particular the California chapters of Los Angeles and Orange counties, and the forward-thinking of executive directors, Peter Braun and Linda Scheck, my efforts would be greatly curtailed.
Most Alzheimer's conferences are filled with people who work within the ”providers” industry. Not often do we reach the people who are most in need of the information, the consumer - the person with dementia, their carepartners. As advocates, we usually "preach to the choir,” but during these next few days we have an opportunity to give testimony to those who in a great part enable us to sing. Together we have the power to affect change.
To date, the advocacy of people affected by dementia has helped to dramatically increase the amount of money available for research. The new cognitive drugs that are the result help people with dementia to live with enormously improved quality of life and productivity. I am one who has reaped those benefits.
However, it is now time to redirect our vigorous research energies toward a vaccine to stop Alzheimer's Disease in future generations, and to fund care for those diagnosed at earlier ages. Specifically, we must channel monies toward programs that will enable PWiDs to remain at home with their families longer and programs providing access to counseling, rehabilitative activities, innovative technological tools and timely medical services.
Just briefly I'd like to go over the handout in your packet which outlines ways in which you can become involved in advocacy and add to that list :
contacting the media in your town when a story breaks about dementia to give them your unique perspective.
Even those confined to their homes can still be advocates through hosting chats, developing e-mail communities, conducting letter writing campaigns to legislators, writing editorials for local papers, offering phone support, and so forth.
Opportunities within the Alzheimer’s Association abound
I invite you to join us in DASN International
Take advantage of the many opportunities in your community, church, social clubs
And so forth …
You need not be limited by any existing barriers. DASN International has accomplished amazing things without an office, without a budget, or paid executives. It shall take the imaginations and creative energies of us all to bring about the kind of change needed to conquer dementia.
In closing I implore you to not only add to this list, but share it as well with others who can share with us in our advocacy’s. Thank you ….
And this is the presentation given by Dr. Morris Friedell, fellow Board Member and treasurer of DASN Int’l:
I'm honored to be here as a representative of DASN International. Here is our brochure, in which we state: "We are autonomous competent people diagnosed with dementia and their loyal allies. Our purpose is to promote respect and dignity for persons with dementia, provide a forum for the exchange of information, encourage support mechanisms such as local groups, counselling, and Internet linkages, and to advocate for services." Our logo is a winged turtle bearing a forget-me-not in its beak. It signfies that despite our bradyphrenia, or torpid thinking, our spirits can ever soar.
I have long valued support groups. As a social psychologist interested in improving society, and as an individual struggling with various issues such as compulsive overeating, support groups meant a lot to me. Persons who don't measure up to normal standards, who society treats as defective, damaged goods, can feel less alone in support groups, and can work together to challenge society and to change it.
So, when I encountered catastrophe for the first time in my life, in June, 1998 when an MRI revealed I probably had a dementing disease, finding a support group was something I quickly thought of. Because it seemed unlikely there would be anyone in my geographic area who would want to confront dementia with all their remaining spirit and intelligence, I turned to the Internet. I also began to study how rich young persons with brain injuries from motor vehicle accidents, whose memory loss and confusion were far worse than mine, received and benefited from intensive rehabilitation, while people like myself were only given "hospice in slow motion," so to speak. As a sociologist who'd studied prejudice, I knew how easy it was to discriminate on the basis of biology and to claim that biology was destiny.
Internet Alzheimer's support groups were, of course, generally caregiver rather than patient oriented, and rather depressing to persons like myself. I was not interested in incontinence, for example. But in early 1999 I found on the Internet CWPML, Coping with Personal Memory Loss, which Laura Smith, diagnosed with AD and living in rural Montana, had recently organized. Like myself, she had a background of 60s activism, was a support group veteran for her personal issues, and had studied leadership, such as Scott Peck's work on community building. Creating DASN as an incorporated nonprofit combining support and advocacy in its mission was particularly her idea. This happened in Aug., 2000, and she became our first president.
An online network is especially helpful for us pwids (or, persons with dementia) because it enables us to get around our memory and processing difficulties. Written communication in chats or emails lets us reread rather than having to remember, and let's it be OK to think and write slowly. Then, not being embarrassed by slowness and forgetfulness we have better self-esteem, which in turn boosts our cognitive performance.
Our co-secretary, Carole, with vascular dementia, wrote: For me, finding chats was like the arrival of paramedics in the 911 emergency of my life! Through them, over time, I was able to:
1. regain hope
2. restore a feeling of belonging
3. rectify misinformation and find authoritative resources
4. resolve to fight my decline
5 ressurect a sense of purpose and direction
6. redirect my energies to helping others in similar situations.
Preparing this talk, as I am doing, 3 1/2 years after diagnosis, I'm conscious of an increased difficulty in organizing my thoughts. I feel challenged to adapt to this situation, but not withdraw from life. I think of the Serenity Prayer, which has been used so much by support groups: "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." We pwids give each other support in accepting the realities of our situation, but we also advocate for change.
We are part of the disability rights movement, advocating for respect and inclusion, whose slogan is "Nothing about us without us." In pursuit of these values, members from California, Montana, Canada and Australia communicated on the Internet and converged on the Alzheimer's Disease International Conference in New Zealand in October, 2001. We had a DASNI booth and led workshops, and put forward the recommendations in the handout. An ADI working group is now considering them. I want to particularly stress 3b) "ADI should urgently determine the policy basis on which people with dementia can be full partners in the life of the organization including contributing to activities and participating in management and advisory functions."
In February we presented analogous proposals (in the other handout) to U.S. Alzheimer's Association staff.
Why do we do this? Why not just try to be comfortable and as normal as possible? Why not simply spend our days gardening or doing crossword puzzles or telling recycled stories until its time for the nursing home? Some of us see it as a matter of the survival of our personalities. Dementia and a dementia diagnosis are traumatic experiences, and the classic text _Trauma and Recovery_ asserts the value of a "survivor mission" for recovery.
Forty years ago Martin Luther King took his message to Washington. He wrote about the "degenerating sense of nobodiness." his people were afflicted with, and he spoke of collective protest with discipline and dignity as a path to pride. He gave his people a survivor mission.
Martin Luther King said, "I have a dream." I too have a dream. I have a cognitively disabled grandchild who is 9 years old. I have a dream that by the time Amy is grown every organization that serves disabled people will include them as much as possible in their staff and administration. Disabled people will no longer be treated like 19th century women who were put on pedestals of motherhood, but denied the right to vote.
This is a dream I want each of you to think about, because pursuing it is so vital for our selfrespect. I know there are not easy answers but hard questions: How many of us are qualified, and for how long? But I would very much like to see the Alzheimer's Association have an affirmative action program under the direction of a senior staff member which would recruit pwids to serve on local boards (like, for example, Jan Philips, speaking in a nearby room) and to hire pwids as paid Internet chat hosts. Here I'm thinking particularly of Mary Lockhart who was diagnosed with Alzheimer's disease around 7 years ago and has done such a splendid job.
I guess the way I'm talking about advocacy right now is by doing advocacy. I used to be a professor, and I suppose it is a kind of Socratic advocacy, where my goal is to leave you troubled by the questions and concerns that trouble me. Then we can work together to find the answers.
Still overcast this morning, but we were lucky the sun broke through about noon to another lovely day and we were able to get quite a bit of work done on the last unit to be painted. It is a very old lapboard home, built in the early 20’s, so it takes quite a bit of time. I do the high-pressure water washing, boy do I get drenched! I have to bring along a change of clothes. I believe I am just inherently messy, my paint clothes, and myself are always covered in paint – even after my shower and scrubbing, I just noticed I still have some paint on the back of my hand – dang! My knee is giving me fits from climbing up and down the ladder, restless night tonight I am sure.
Tomorrow we will take the day off from painting to clean off our desks, catch up on some laundry and get packed for our trip to Washington DC tomorrow. Our flight leaves at 6:30AM, but we have to be there 2 hours before that, so it is going to be a very early morning! I am starting to get a wee bit nervous about my presentation, hopefully the pills I take to calm me down for the flight will still be in effect for my presentation! lol
Wade made his special oatmeal with pecans and brown sugar for breakfast, and we said our good-byes to Don & Carole they are off to Texas to visit family. We donned our painting clothes and headed over to the apartments. Our gorgeous weather disappeared though and about the time we got set up the rain poured. We managed to trim some trees, but that was about it!
There is a special coming on on MSNBC on Sunday about a woman’s journey through early Alzheimer’s Disease produced by her daughter. It coincides with the Public Policy Forum in DC, hope it helps to bring home the message to our congressman for the need for further funding for research.
Another beautiful day. Today we took Don & Carol’s new Mustang convertible and took a ride down to the beach. They treated us to lunch at one of their old dating spots, ‘Joe Josts’ – the special there is a polish sausage sandwich on rye which comes with a pickled egg, hot peppers and pretzels – definitely different! I guess back in their earlier dating days women were not allowed in, so Don would buy the special and bring it out to the car. For sure a food day, we went to dinner at Johnny Reb’s which boasts authentic North Carolina white BBQ sauce and a homey atmosphere. Chickens cackle when you open the front door, and the restrooms have barnyard sounds and an occasional coyote howling. The ceilings are hung with southern flags and the walls decorated with antiques – really a fun setting. The guys particularly liked the peanuts whose shells were deposited on the floors.
Our friends, Don and Carol arrived on Monday morning. It was sure nice seeing them again. We met them 25 or so years ago when we all were into sailing – Wade and Don raced and Carol and our kids visited. They are now living in Yuba City, which is about an hour out of Sacramento in California. We try and see each other at least once a year, usually at a motorcycle event since he also rides a Harley now. But they REALLY ride – their trips are usually 2,000 miles or better. My backside won’t take those kind of miles!!
We took the Model A out in the afternoon, top off. Carol and I rode in the rumbleseat. A gorgeous day, in the low 80’s we went to ‘Downtown Disney’ and enjoyed walking through the shops there. It always amazes me when we get to the entrance gates to Disneyland and California Adventure, that the whole thing had been constructed on what was once the Disneyland parking lot. It’s always fun being in the Model A, lots of ‘thumbs up’, and questions about what year it is. And of course Wade does enjoy blowing the ‘a-OO-ga’ horn!
Well I haven’t been entirely idle since I’ve neglected my journal
On the advocacy front I have participated in the Family and Patient Services Committee, spoken with two groups of Carepartner Group Facilitators, co-led a ‘Focus’ group of PWiD in regard to their experiences and expectations with the Alzheimer’s Association. ( I am still working on transcribing the tapes from that) and finalized everything for our trip to the Public Policy Forum in DC next weekend.
I finally got another box mailed off to my “Stitches From The Heart” group (we make baby hats, booties, blankets for preemies and babies in need) I had 132 hats (34 with matching booties), and a blanket. I usually have more blankets with the scrap yarn from the hats, but I found a bootie pattern that only requires a small amount, so that is where the yarn went this time.
I am frustrated with my Mom’s situation, yet unable to do anything to help. I gave my step dad more literature to help him understand better, he is not interested in doing anything to help, just always complains. When I suggest that he place my Mom or at the least get her into daycare he balks – not that he doesn’t have the money, he just doesn’t want to spend it on my Mom. I know her behaviors are frustrating – his complaint yesterday was that at the restaurant she wouldn’t let the waitress refill her coffee as she insisted it was hot chocolate. Sounds like he made a really big deal about it. Why? What harm did it do him, or my mother. He agreed but nonetheless continues to holler at her and berate her for that which she has no control over. She is very sweet and compliant, and tries very hard to please everyone around her, just no longer has the brain connections to chose the right things or do them properly. SIGH …. I am going to TRY and find out if there is any type of community day care in their area – she needs a break! He complains, but does not want to let her out of his sight, even to visit with me.
I’ve been busy at pogo.com palying cards and the like I’ve gotten to hoarding my tokens which now are 330,000+
Much of our time has been consumed with thoughts and plans about a major lifestyle change. We are looking into purchasing an RV park, liquidating our property here. We have looked at many for sale, but seem to be concentrating on one in Louisiana. (Mom always told me to be careful of Florida swampland – she never mentioned the swamps of Louisiana! LOL) I am busy trying to find something elsewhere to be honest – I hate humidity! But, no matter what I have always been the kind of person who adapts easily. – Guess I’ll have to be the resident pool lifeguard, or spend my days in the air-conditioned offices! We did find another in Michigan, but Wade just can’t get beyond the 110 in. of snowfall they had last year! We’d like to find one with a fishing lake, pond or stream on the property. We’ve been looking in AZ,NM,TX – found another in Texas – too much fixing up to do! We are scheduled to get a line –up of properties to go see in June .. right now with the LA park being our destination. We’ll make a stop in Houston to see our son Jeff & family, and hopefully connect with my friend Dean too. Then we will go on up to NC to visit with his family, then home via the 40 where I hope to get to stop and see Jamie (TheRibbon.com) in Nashville and Mary from my DASN Int’l group in OK City. Along with gearing up towards moving into the RV park we have been busy spiffing up our properties with a new exterior paint job - my shoulder muscles are sure sore!!! I have the job of washing them down with a high pressure hose and painting the trim. Wade has a spray unit for the base paint so that goes on well.
I have started to copy my early journals into Word so that I could get them transferred over here. I had done this once before, but somehow cyberspace gobbled them up! Guess that is what started the dry spell of my journal. I got so upset reliving those early traumatic days, it depressed me and put me in emotional hiding. Hopefully I will be able to continue, and detach myself from the past.
We have spent a lovely week with Ashton here. We went camping at a new (to us) RV park just an hour away. It is sure to become a favorite destination of ours. It has three fishing ponds, huge shade trees and is very comfortable with everything very convenient. We didn’t catch any fish, but sure enjoyed trying! They also had a huge white swan which was very surreal in appearance when we met him that first night gliding over the water in the moonlight towards us.
Tina is coming up tomorrow and the kids are going to a birthday party, then Ashton will go home and Jake will have a few days with us. I tried to get us back into the campground, but they are full. – I am bummed!
A very special THANK YOU to my DASN Int'l friend Mary for visiting and signing my guestbook. Mary is a steady source of support for all of DASN Int'l since she is our chat hostess and is faithfully there for all of us during the twice daily chat and through email. She along with Carole are our welcoming committee as they greet each new member personally. I admire her,this past year has been terribly trying for her and yet she is always there for others putting aside her own troubles. You can get to her website from my links page or go to: http://www.angelfire.com/ok4/mari5113/index.html -- she'll be glad to have you stop by and visit - don't forget to sign her guestbook!
This was sent to me by my friend Sandy I thought it too cute not to share, and very timely:
Did you ever notice: When you put the 2 words "The" and "IRS" together it spells "THEIRS"?
Drove down to pick up Ashton this afternoon and spent a bit of time visiting with the family. Todd had surgery on his shoulder yesterday, so he is just a wee bit under the weather. Tina showed me her makeover of the guest bathroom -- Wow! she is so talented, her entire home looks like something straight out of Better Homes and Gardens. Jake wasn't too happy about staying home, but we assured him it would be his turn next weekend.
Time surely does fly when you're having fun!! NOT! I won't share with you what fun getting the rest of the unit done has been, but I will tell you that I am glad we are done and that the new tenants have moved in. We still have to go back with some screen replacements though.
I 've been busy in the evenings getting my packet together to send to Washington DC to register for the Public Policy Forum in April. I had to write my own introduction for my workshop - a first for me, and send in my handouts for approval. We are also going to take the "After Dark" tour while we are there. Wade is such a history buff, he is really looking forward to that. The National Alz Assn. is paying for my registration and 1 night's lodging and Orange County has graciously offered to pay Wade's way and pick up the balance of the hotel bill so that we can stay for the entire conference. Thank You BOTH !!!!!
My Mom & stepdad came for the day today and we had Christmas in March since they were unable to come before now. Wade & I made a roast chicken dinner with all the trimmings and dessert. It was good to see my Mom again, her level of confusion has increased and she must be escorted to the bathroom , etc. or she becomes lost and confused and unsure of why she is where she is. She is also having trouble with her gait now, and is unsteady on her feet. I find I am not upset as I usually am though, this new medication - Zyprexa which the Dr. has me on to help with sleep and obsessive worry has turned me into an emotional zombie. Usually I find great sadness and concern over seeing myself in the looking glass of the future so to speak. This time nothing . . . I hadn't really been aware of this lack of emotion till we found the dogs had gotten into the new quails last week and eaten 4 - normally I would have been very upset, but I find I have no feelings whatsoever -- not good. I have my 2nd appointment with the psychiatrist tomorrow , so I am going to ask him to change the medication, I gave it the month trial , don't think I care to continue.
We are going to pick up Ashton after my appointment to visit, when I asked her how long she wanted to stay she said "forever". So we discussed all the things she'd need to be bringing, when I asked her "what about brother?" she said she just didn't think there would be enough room." LOL --
I am looking forward to Sunday, we have met another couple (he with dementia) that were referred to us by the OC Alz.Assn., and have visited on the phone so Sunday we are meeting for breakfast.
The chat topic was denial tonight and after the discussion I wonder if I don't really have dementia, rather that I am just demented!!! LOL
I am one pooped person! We have spent the last few days cleaning up and painting a vacancy. Boy did these people live like animals and left us a huge mess. We filled two dumpsters with the trash they left, and will have to replace carpet throughout and the bathroom and hall floor, replace the kitchen tile countertop and all the lighting fixtures which they took. As usual they is no shortage of people wanting to rent it as we have our rents below market - we prefer to have long term tenants, we have 2 that have been with us since we bought the property 23 years ago - but, every once in a while you get a bad apple. It's surprising the amount of damage people can do in six short months.
We are down to just 4 baby quail now,and removed the mom, we thought they were perhaps dying off from natural causes, but after watching them seems mama may have had something to do with thier demise. So Mama is back in the main aviary, the chicks are still in the carrier with a reptile heating stone and a serrrogate mother --- Wade's feather duster! We are keeping them in our guest bathroom and go in and talk and pet them so they won't be frightened of people. They really haven't grown much, which surprised me, sure are cute!
I received my registration packet for the Public Policy Forum in DC on April 27-30. Morris Friedell will be speaking in workshops, unfortunately they are running concurrently so we can't be in support of one another. The blurb about mine reads:
....sharing her experience and understanding of Alzheimer's Disease, public policy issues and the ways and reasons for persons with AD to be active in advocacy. She will also share the experiences of being part of DASN Int'l, a web based support network of persons with dementing illnesses.
and for Morris:
Learn how advocates use email, online discussions, mailing lists and the Web to participate in the policy making process.
I need to get busy and make DASN Int'l brochures and copies of our two proposals (the one to ADI and the US Alz Assn.)so that Morris and I can use them as handouts. We are both hoping to meet and spend time with other Internet connections in DC. So consider this your personal invitation! LOL
Got a note from Ramey she said the video turned our well and will forward me a copy. I was talking about it on the phone with a new friend and I didn't realize till we were talking why I was hoping for an invite to the Gala. She asked why I wasn't invited, and I told her I was via video . . LOL But then I told her I really did hope some day to "get to the ball". I was married at 16 so had no prom, and with a pop top off a beer can guess you know the caliber of my wedding, obviously no fancy wedding dress. So I guess I have always longed to be "Cinderella at the Ball" so to speak - have a beautiful gown, be in a limo. LOL funny isn't it, the richness I've been blessed with being with the same man after all these many years, being able to afford to fufill our childrens dreams far outweighs the dreams of the 'fairy tale wedding' that I think all little girls have. That's it - I am supposed to be reverting to my childhood? !! LOL Let's be honest here, even if I had received an invitation, I have nothing to wear and further would have no idea of what to buy to wear to such an affair - let alone have money for just one night! Guess dreams will have to do. I do have a friend who indulged me on my dreams a bit - Penny - she closed her business and gave me a wedding dress - it's exquisite, all hand beaded, I've put it on a few times and just let myself dream! lol Oh my goodness, now you know how silly I really am! Oh well, I'll just blame it on the dementia!
Oh my, we have a dozen new quails! They are so cute, about an inch and a half long and rambunctious! When I looked out into the aviary this morning two had bailed form the nest and were peeping for help – mama quail was in a panic since she had no way to retrieve them. I went into the cage to rescue them and found two others cold and stiff on the ground – I was really sad that I had not gotten to them sooner --- being as I was trying to round up the others I stuck the two little ones in my pocket – by the time I was out of the cage they were squirming, so I got them good and warm again, and now they are fine! We moved the mama and her brood to our dog carrier with a fresh bed of hay, feed and water, and will leave them there till they get a bit older and stronger. They sure are fun to watch, especially when she rounds them all up and tucks them neath her wings and all you see is two or three little heads peaking out.
We met with Ramey Black and her cameraman Douglas – what nice people. She interviewed me for a video that will be shown at the Los Angeles fundraising Gala. It was a real pleasure to have the opportunity to thank the Alz. Assn. for all their support, for truly without them I would be in a care facility for it was their $$ that supported the research for Aricept, and it is they who continue to provide opportunities and support my advocacy efforts for early stage people with dementia.
Tomorrow will be the first of a few days spent cleaning, painting and readying a vacancy. . . . Not my idea of fun! Lol I sure hope that they haven’t left too big of a mess.
Talked to both my brothers this evening, I sure do wish we lived closer, I really do enjoy being with them and my two sis’!
We had a great weekend! Ashton and Jake were here and helped me to learn my new “Zoombini’s Rescue Mountain” game. It’s a brain challenge for me that deals with logic. I can tell this one is going to be much harder than the original “Zoombini’s”. They really enjoyed it, so I sent it home with them to use till our next visit.
Saturday we went to the park and tried using our snow dishes on the big hills there, unfortunately they didn’t work very well – guess they are going to have to wait for a snow trip. Ashton and I made cookies – Snickerdoodles and peanut butter. Sunday we had chocolate chip waffles with peanut butter for breakfast, then headed down to the beach for the day in the RV. Todd met us there and brought fresh strawberries for me – boy, are they GREAT. So sweet you really don’t need any sugar, just rinse & eat!
Tomorrow will be busy, we have to take in the car for repairs, then have a 1 o’clock appointment to tape a video for the Alz. Assn.
Sounds like the quails may have hatched this evening – hear new little peeping sounds – we’ll see in the morning!
Happy 21st Anniversary to my Mom & Step-Dad. I called this evening to wish them well and to talk to my Mom, she is declining more and more due to the dementia - physically she is sound as a dollar. Jake and Ashton (our grandchildren) are here visiting for the weekend and so they asked to speak with greatgrandma too - she was so confused she thought she had spoken with my two children, as she went on to discuss with me what a good Mom I was and how nice "Tina & Jeff" are. Sigh . . . on one hand it is good to hear her sounding so well and happy, on the other it is frightening, and saddens me to see what will be my mirror image.
As I said Tina brought the kids up to visit for the weekend, she has seminars booked for her Holistic medicine. They are having a great time figuring out and playing the Zoombini's Mountain Rescue - will help me for sure, for I couldn't figure out a couple of levels!
My big brother Les called, it was nice to hear from him and my 'sis' Gayla. She is recovering from surgery so if you can fit in an extra good word for her in your prayers it would be appreciated!
Hey there! I’m back! LOL
After some very frustrating days it looks like I am finally going to be able to have access to the Internet without any more problems! Wade installed the DSL hook up for me, and all seems to be fine. It is not as fast as I anticipated as far as going from different links, it still seems to be the same amount of time waiting for a download – so I’m not sure what all the hoopla is about. I thought it was going to be like my son’s, his is almost like turning a page – I’ll have to find out why his is so much better. At least I am able to sign on to AOL now without any further problems.
Many thanks to Nicole and Diane for visiting and signing my guest book.
Many good things happening! Had a great meeting hosted by LA Alz. Assn. With execs from their office, Orange County and National. Phil Hardt (the DASN Intl President) who flew in from Phoenix, and my hubby Wade were all there. We discussed the proposal with them, and found a very receptive response and discussion.
Phil, Wade & I had a great time together . . . we made tentative plans to meet next month at a campground near his home.
Orange County Alz. Assn. has invited me and Morris Friedell from DASN Int’l. to speak at their November conference. I am hoping with this much lead time that we can gather together some of our DASN Int’l. membership for an informal meeting and brainstorming session at the same time. I also received an invitation to make a video for a presentation at the Los Angeles Gala, Night at Sardi’s (probably the ONLY way I’ll ever make it to a “Black Tie” affair! LOL) – I am really pleased to have this opportunity to speak to the them and thank them for allowing me to be an advocate for patient services, and not a resident in a care facility by their efforts to fund research, helping to make Aricept available to me, sponsoring for New Zealand, speaking at their venues and giving me what I feel is a VERY realistic hope that a vaccine will be made available for my children and grandchildren to stop the legacy of dementia in my family. I am supposed to meet this next Monday for the taping.
Let’s see what else . . . oh, I have started going to a psychiatrist at the request of UCLA to monitor my anti-depressant. Thought the guy was going to fall out of his chair when he found out that I was just given a prescription and had not been seen but once a year! LOL I’ve never been to a ‘shrink’ before, he seems very nice. He gave me another prescription for helping with sleep, after just 5 days now I’m not so sure it is helping or making matters worse. I do sleep a bit better, but I have lethargy and headaches as side effects
I turned 52 on Tuesday the 26th. Mary Lockhart left a wonderful song on my machine, and the grandkids, Jake & Ashton, not only sang but recited poetry as well! Good thing our daughter called early in the morning and reminded Wade or he’d have been in the dog house again this year. He bought me a lovely plant with purple flowers (my favorite color) and a very gushy sentimental card LOL. Laura Also caught up with me on IM and let me know that Tim Brennan and I share the same B-Day - so it was fun connecting with him too . . . his sis was taking him off to the casino for the day, hope he had good luck! Every new day REALLY is a gift, I need to remind myself of that often! When I was diagnosed at 45 we were told that I could expect to find myself in a care facility in about 5 years -- so you see thus far I really have had a great gift!
We took a tour of the National Factory where they make RVs like ours – Wade thought it great, I found it rather boring -- but would never admit that to him!!
This quote was shared by Lynn Jackson - Knowledge is power....it is a balance of hope, leveler of anger, controller of denial. The more I think about it the more I like it! I've always said knowledge is empowerment!
My thanks to Greg and Mina for visiting and signing my guestbook. Mina shared with me that she is from Sweden and that her mother named her Mina after a flower from Iran! Learn something new everyday!
Spent a wonderful afternoon with my friend Marilyn who now lives in Switzerland, she also has Early on-set dementia. She is doing great living by herself and has adapted well to the quietness of her European chalet. She is very active in the American Woman's club there and works at keeping herself as active as possible. I of course am hoping she will joi us in DASN Int'l. We have one member in Switzerland already, time to increase the numbers! LOL
I also spent time with yet another person on IM who found me through my AOL profile - it is nice to be able to connect and listen and be able to offer some suggestions for websites and information to help them.
Guess this is another of my weekly updates! lol Not by choice I assure you, AOL is giving me fits! I am having a devil of a time getting in, and when I do it either won't open up the full screeen or if I do get on it won't let me get here to edit or even worse boots me mid entry!!! It has been very frustrating to say the least. I think after changing computers to try and solve the problem, and no change that we have decided to change Internet providers ... Wade is looking into DSL (YEAH!!) and has asked me to look at two others that our son suggested. So most of today was spent in trying to answer unanswered emails, download my address book and favorite places. I am just about done! WHEW! That was areally big job.
Friday I received a call from National Alz. Assn. asking me to present a workshop in Washington at the Public Policy Forum - I've just found out today that Morris Friedell also from DASN Int'l has been asked to give a speech, what makes this so special for DASN International, and why National is covering the cost is because we are considered 'outside speakers' as they have asked us to share our DASN Int'l experience! At last they are recognizing the value of DASN Int'l to them. I hope this is just the beginning - we have such a diverse membership in areas across the US (and 10 other countries) -- that they call on us to participate in conferences nationwide.
Sunday February 3rd was also Morris' birthday, he was feated in the DASN Int'l chat with a party. I was so bummed that I couldn't attend, I had knocked off the breaker switch to the office and by the time I figured out how to get it back on AOL decided to be stubborn again and not allow me on.
I received a nice invitaion this evening from a media contact of Peter Braun's, they want me to do a video piece for them to show at their Gala at Sardi's for the Alz. Assn. to share what having dementia is like --
Thank you again Peter for all you have done and continue to do to bring the voice of PWiD to the attention of those who can help.
Thank you very much Tim Brennan for entering your kind inspirational words to my guest book.
Frustrating morning to say the very least! Stayed on the phone waiting for AOL tech support and continued the dialing to get on line that I started at 6:30am -- what a mess after four hours back & forth with AOL, seems my problem was my modem going south! Wade has moved me over to our other computer - sure hope this is the answer!
M & M's is having a vote to see what color to add to their regular colors -- pink, purple or aqua -- of course I voted for purple (as did 59% of others voting)!! LOL
Someone sent me a quip that I thought was cute .... I am in shape!!! Round IS a shape! LOL
Thanks to Karen Murtagh and Julie Reymore for visiting and signing my guest book.
We spent the night in the RV as it rained. Have to admit I was a bit disappointed, this one is too well insulated so we didn't hear the rain as much as with our old one.
Having just sent out the letters to the ADI member Alzheimer's Associations yesterday, I was very pleasantly surprised to find positive responses from the UK, Japan and Germany in my email posts this morning. In fact Germany has added a link to DASN Int'l on their web site.
My pogo.com token count is now up to 183704 - figure this is a good place to record it and keep track a bit.
Went through and got my hats labeled with the Stiches From The Heart labels and did a count . . . I was really surprised! Seems I have 99 hats and one blanket finished and ready to mail!
Hung onto the covers too long this morning, so we didn't go to our usual breakfast at the airport --- heaven forbid we miss a minute of game time!!! And sports were on ALL DAY -- football and basketball.
Wade lit the fire and kept it going all day so it was cozy. I spent the better part of the morning trying to get the AOL fixed - seems my Internet Explorer is in some way interferring with the AOL files. Sure hope it's fixed -- this has been frustrating and aggravating.
I got all the letters sent off via Internet email to the member nations of Alzheimer's Disease International (ADI)---- one more project complete!! yeah!!
Received a very nice email note from Betty Weiss, her husband also is one of the pioneers in the Omentum Surgery, I was pleased to hear that he is still doing wellas Betty said "it has given Bernie a better quality of life, bought him three good years, and that's no small gift." And she did a bit of correcting on my post yesterday which I need to share. The Omentum Surgery is supposed to nourish the cells that are in jeopardy because of decreased blood flow, and 'rescue' them. It can 'nourish' but not 'regrow'. Thank you Betty that is a very important point ... I try hard to be factual in my writings so as not to mislead anyone -- so your post is very appreciated!
Jennifer our youngest (25) DASN Int'l member rejoined us in chat today. She had a very rough time of it after 9/11 living just across the river at that time, and recently has had quite a prolonged bout with pneumonia -- It is wonderful to see her feeling so well -- almost like her old self!! Glad she and her hubby Josh have rejoined us.
It was very cold here today, rain is forcast for tomorrow .. played alot of solitaire on Pogo.com, cleaned the aviary and crocheted a few more baby hats. --- The pile is growing! I need to count them and get them boxed up and off in the mail.
Looks like a busy sports day tomorrow -- think I'll get a pot of beans ready!
All in all a most uneventful week, which past in the blink of an eye it seems. I can't belive the month is almost over.
Reconnected with with some people this week. I was able to reach Joe (Joe's Quest) and his partner Penny and do a bit of catching up -- Penny is like me, we really don't have much to say yet can talk for hours, a nice connection between us! LOL Joe is recoving very well from his Omentum Surgery. It is a brain surgery of sorts, still in the experimental trial stages, that is supposed to promote the regrowth of brain cells. I admire Joe, this was a big risk he took that will hopefully pave the path for others. He literally put his life on the line to promote a help, a hope for people with Dementia.
Another old friend is Tim Brennan, he was away from the Internet and chat boards for a while and has recently been able to reconnect. A kind loving soul, whose writings are magic. It is his story of "Turtles and rabbits in this world" that inspired our DASN Int'l mascot, 'Dassy', the turtle with wings and a forget - me - not flower in it's mouth.
And yet another friend, Marilyn Joyce, has returned to town for a visit from Switzerland. She and I were good friends together in our first Early Stage Support group. She made groudbreaking inroads into the Alz. Assn since she was their first contact who did not have a carepartner, and lived alone. She has sent me an e-mail and I am waiting for her call and really excited about connecting with her again and catching up on our lives.
Been busy finalizing the sponsorship proposal to be sent to the Alz.Assns for the Barcelona ADI conference. We are promoting all of our DASN Int'l membership to submit a proposal to their local Assn. PWiD participation in NZ last year was historical and precedent setting, I hope we can continue forward. Also I have been working on a wish list of sorts to present to the National Alz. representative next month, outlining ideas for inclusion of PWiDs in their program services.
And I must confess much of my computer time is spent at Pogo.com - sometimes a challenge depending on the game I choose - always fun !!
The grandkids introduced me to the cartoon show "Squarepants Sponge Bob" - silly, silly , silly !! LOL We also played darts, Ashton proved to be the winner overall with that.
I marvel at how good I feel when they are around. Even if I get confused with all the commotion sometimes, I am so glad to have them with me. And it is nice to have Tina to visit with. Before they moved we were always together, heck we couldn't get through the day with at least talking to one another once. Of course time and distance brings change. I was very sad to have to say good-bye to them, and spent the evening in a rather sad mood. Tomorrow will be better. At least I got in my share of hugs to last a few days !
Tina brought Jake and Ashton up to spend the day and night since tomorrow is a school holiday with Martin Luther King Day being observed.
I am ALWAYS glad to see them, I gather all the hugs and kisses I can ! Todd, my SIL, who stayed home studying for his final written exam, the first step towards getting his pilots liscense, passed with 'flying colors' this afternoon.
Tina and I spent the evening playing Scrabble - great fun, even if I was beaten soundly!
A Thank you to Debbie Cousins for vising my journal and signing my guestbook. I really do appreciate and enjoy when someone takes the time to sign my guestbook!
Well, this is getting to be the week in review instead of a daily journal entry. VBG!
We had a nice time at the Emerald Cove Resort in Arizona. We brought our bicycles along so rode them daily, the weather for all but one day was cool and sunny. Of course we choose the day that it was cloudy to ride the Harley over to Quartzite. Quartzite is a desert community with a base population of about 350 I'm told. In the winter that number sweels to about a million as the snow birds in their RV's take up residence on hills, bluffs and the desert floor. It really is quite a sight!
I do enjoy being out in the RV - it is familiar, and my choices of things to do are limited which helps alot. Here at home there are too many directions that I can go in, daily responsibilities, Internet connections, etc. -- hard to decide where to go! I generally start out doing one thing and it just snowballs into something else leaving the first thing undone. Life in the RV is far less complicated!
I finally got the proposal to the Alz. Assn. for the sponsorship to the ADI conference in Barcelona completed. I also shared it with my DASN Int'l friends in hopes that they will apply to their local chapter. Christine Bryden our Australian member has already secured funding for 5 couples from Australia to attend.
I really am working on completeing projects that have been left half-finished - my desk is such a mess! I really need to hire a personal secretary for a week or so to help me organize and re-type some journal entries.
Happy New Year to you all, even if the wish is a bit slow in coming! Not for lack of trying I assure you . . . between AOL giving me a hard time and my inability to remeber how to get here to edit this page, I am indeed very behind. Hopefully we have solutions to my problems though -- AOL assures me if I download another copy all of that problem will be squared away, and I am going to sign up for an online class in web page design and management that will run for 6 weeks beginning February 13.
I had a very nice start to my New Year, I received a post card from Dr. Miyake Yoshio wishing me New Years greetings from Japan where he is the Vice President of the Alzheimer's Association. We had met on the web through DASN Int'l and met in person last October at the ADI Conference in New Zealand. We also sat together during the conference dinner. I admit I wasn't much of a conversation partner -although his English is very good. Alan Gibb on the other hand a DASN Int'l. member from New Zealand was able to converse with him in Japanese -- both were laughing and carrying on for some time! I bought a translation program that translates messages to and from -- unfortunately I will have to get some more memory for my computer before I can put it to use.
I worked hard this week to get unfinished projects completed --- still a few left on the table, but all in all I am doing better!! I have sent out some ideas to our DASN Int'l. board and hope to get moving on those soon.
Wade and I are going to Parker Dam along the Colorado River for a few days, he has some unfinished business in regard to the RV that we need to wind-up. And too along with our purchase Bueadry RV gave us a free 1yr membership in one of the RV resorts on the River so we will be staying there. Actually I am disappointed I really wanted to go to Laughlin, where we had initially planned on staying. I do like the slot machines! LOL
My Journal (July thru Dec 2002)