….if they include famous faces in the neuro psych tests…..well….there won't be any smilies on my feedback….

I guess the tests are real valid…as some of the answers are flying thru my mind right now….

me too...."apple" "table" "penny"....

Same three words in Feb as in June!

Then there was the storm in miami in which 3 million dollars damage was done but no one was killed....at least I have gotten different stories! I know they have more than one!!

O, you guys are making me laugh too hard this morning! "Three children were alone in a house, and the house caught on fire..." (That's one we have used a lot.) One of my doctoral students actually looked recently at "learning effects", how much do people get better from year to year as they remember more. Here we rotate the stories and word lists in a 3-year cycle.

Some years ago, when I was in Chicago, we had a long-term study with members of Catholic religious orders (nuns, priests and brothers.) We knew there was some learning from year to year and looked at how much, and found there was one convent with really huge spikes. Turns out the nuns with really good memories had written down all the stuff they remembered from the tests and were coaching the other sisters before the annual follow-up. "Now, Sister Scholastica, it was THREE children in the house!" I remember thinking boy howdy, no wonder the Catholic schools used to run rings around the other schools in contests.

My mom, who was suspected of possible Alzheimer's, came back to Charlie's office after the neuropsych testing and told us all the tests they had given her and all the things she was supposed to remember. Charlie sort of shook his head and laughed and said well, doesn't look like she has much memory impairment... that was one thing that tipped the balance toward Lewy body diagnosis. Plus the delusions, visual-perception problems, executive function loss, sleep disturbance, ...

Craig, your ability to make us smile as well as to bring tears to our eyes is amazing - sometimes you just have to laugh at all of this, at least in between crying. I imagine you as having laugh-crinkles and a LOT of patience. (Even though I know you are pretty frustrated now!) Hang in there, and know that you are helping a whole lot of folks!! Thank you!

Laurel (who would so totally fail a contemporary culture test, but hopes to be spared such a humiliation for the time being.)

you guys…are making my journey…possible

there isn't enough reality available even with you guys….but without?

…I am desperate….

but…not for a answer…I calmly pray for that….
and….not for cure…I accept there is none…

I am desperate to get off the topless ladder…the I-1xx Loop… to jump out of my rat race ferris wheel cage…

so….I can live….now….today…this moment….

I am wrapping up my old journey to nowhere….
Visiting with you…
and preparing for LIFE…as far too few of us know it….only the good stuff…

I am losing my house, wife and life…all with certainty…(progress being made on all fronts)
But….I haven't stopped living…
no….I haven't really started…watch me….seriously

I have been disassembling one life and assembling another…
this community….you…are a bridge between the two….

but….give me a moment…this is going to take effort….abstract thinking….but….I have all the time in the world…because I choose to use it here….right now….

you are the bridge….that I will never cross….
I will meet you on the other side…

I am so fortunate…
to be able to INCREASE living in the now…today….what a concept!
after diagnosis…
instead of already finding myself in your community…being talked about….

I no longer spend all those agonizing days looking for an answer…
I am not trying to 'bridge' to being a 'full time' patient….
I am still in control and for the time being... skipping the bridge and going the other way way around….
I am spending my time creating the LIFE we all want and don't think we have time to live…..

the roses smell just scrumpcious…the coffee looks so very hot…and driving around with my camera in use….priceless

Carpe diem, Craig!

Craig,
How beautiful and how true!!

The sunsets never looked so beautiful....music never sounded so beautiful.....all the little things are so wonderful...I too get to LIVE this now....what a gift....

Thanks for saying it like I can't Craig....really beautiful words!!!

Best,
Tonya

Tonya….you just said it…beautifully…now lets live it!

I have an idea….when I get there for the neuro pysch exam….

I will not wait for them…oh…no…boring…..

I will tell them the stories….and recite the word lists….

and tell them it was just a little something I was daydreaming while waiting to start….

then tell them….okay….lets get started…...

I'd love to see that, Craig.

Jeanne…do you think if I came in with the image already drawn….would that be too much?

Too funny, Craig!

Yeah, Craig, that might be pushing it. Especially if you run it off a graphics program.

Dr. Boeve will want to watch you do the drawings. I suppose you could point to his computer and ask if he has CorelDRAW Suite X5.

not to worry…I won't mess with their skewed results….okay…I hope I am joking….

since I just had the tests back in March of this year…at Mayo….hopefully I will get something different this time

there should be a big improvement in the word lists or if not there in something….Aricept is having real effect at home, so that should show in the tests

it is funny….I can remember so few details of all the word stuff….any of it that was verbal…and when taking the tests, very evident to me…..even after hearing the same story three different times over 3 years….

the images are a different story….that is probably why I am still driving…I think I did okay there….still holes in what I remember….but….I still 'see' what you see…and I am able to still draw it that way too…but then…do I really?

…ain't life just a big ole bowl of cherries…or was that apples?

Craig,
I'm sure that would throw them some!

I'm glad the aricept is helping you - it's helping me too....oddly I also did well on the visio-spatial (sp) part of the last "dementia" test......You just never know with Lewy...I showed no deficit there - yet I can tell some changes in my daily life in that area....So something is going on....

Yes the language deficit - that surprised me the last time - wasn't present the two times before....

I hope your visit with Dr. Boeve goes really well.....I don't know if he will add any medications, but I have been on the Namenda for about 10 days now and I am at 7.5 mg/day going up to 20 mg and I can already tell it's helping....it's helping with processing speed, typing, forming sentences.....it still isn't what is used to be but I am grateful for every improvement no matter how slight - I would call it more than slight.....Everyone is different of course and I am not suggesting medications, that is Dr. Boeve's job, but I just wanted to share my experience to spread hope!

I was able to go to my office yesterday and meet with a colleague. I am still hanging on the part-time job working from home (except for a short time yesterday) until I see what the Namenda may do....if not enough improvement I will begin looking at disability retirement this fall, but right now it's kinda promising the response I am getting already....so we'll wait and see....

Have enjoyed this thread tremendously - right now it is morning and there are so many birds at the bird feeders and sun beautiful sunflowers growing in the yard all lit up by the morning light....I sit in this chair most of each day and look out the window and I have noticed what beauty the sun angle gives to things as if changes over the day - I guess Monet already knew all about this But it really is quite spectacular how different things look in different lighting....

Hope everyone has a nice day!

Best,
Tonya

Tonya, Craig, you have just provided the best case I can think of for early diagnosis. I wish everyone diagnosed with LBD could have the time to appreciate life in the same way.

I agree. Carpe diem! (And thanks for making me smile!)

Kate

Tonya - you are seeing like an artist! Do you paint? Draw? Sculpt? If not, you may want to delve in and see what you can do! Lynn