Re: Problems with memory retrieval

[Guest guest]

Dear Dixie,

How very difficult for you to deal with. I have put your emails together in my

head and just

don't come up with enough of a picture to respond to you as effectively as I

would like.

Here in Ont., the govt. pays for Aricept as long as cognitive function is above

10 on the

accepted scale. My mother is likely not even there, so the doctor recommended

its

removal and we did so in Feb. She seems to be declining at the same rate she

was before

removal. Actually she came back cognitively for about 3 weeks after its

removal, thinking

of your husband's recent " awakening " . I truly feel, as the doctors prescribe,

that patients

reach a point where it is not effective anymore. As for your previous question

about

Exelon, I can't answer that.

How very special those aware times must be for you and your husband both. Thank

you

for sharing such an endearing sharing.

I fully agree with the theory that the Lewy Bodies are migratory and that is why

we see

such fluctuations. So very hard to deal with.

, Oakville, Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 1/2 years ago LBD diagnosis, evident much longer in hindsight.

Encouraged to give up her licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol 1g 3 times a day, Mobicox twice a day

Off Aricept since Feb./06

> >

> >

> > >

> > > So, my question to you is <snip>

> > >

> > > is it something that you saw periodically in the

> > > beginning, yet

> > > in the later stages all the time?

> > >

> > <snip>

> > > Which is not only frustrating, but scary. Like she's

> > > stuck in her

> > > head and unable to communicate.

> > > that it makes me

> > > wonder why it's difficult to diagnose...

> >

> > My grandmother & aunt had Alzheimer's - my mother has

> > LBD. The main difference that I see between the two

> > is that when my grandmother lost a skill, it was gone.

> > My mother loses a skill for a short time, then it

> > returns. Mother has made the effort to communicate

> > for a much longer period of time into the dx than

> > grandmother did - *but* - mom's at home while g-mother

> > was in NH. Grandmother's (and aunt's) communication

> > skills dropped nearly completely in early stage 7 alz

> > - while mom fluctuates daily between what the alz

> > charts say is stage 2 & 7. (i realize that LBD & alz

> > are different - but it's the only gauge available)

> > Grandmother just clammed up & quit talking, while mom

> > looks for new ways to express the words she can't

> > find. At 4 years into the disease, my mother

> > communicates more effectively than my grandmother did

> > within the same time frame.

> >

> > The beginnings of both were similar, except that mom

> > didn't repeat herself as much. Both were confused

> > occasionally; and every-day habits/activities became

> > somewhat daunting. Communication became more

> > difficult but for mom at a slower rate. They both

> > lost their ability to cook at about the same time.

> >

> > All of the Dr's that she has seen (and those that my

> > grandmother & aunt had seen) *insist* that they're not

> > in there behind the fog. I beg to differ - but since

> > i'm only the care giver / nurturer, i obviously know

> > *nothing*. My vibrant, intelligent, funny mother *is*

> > in there behind the fog - and some days, the fog parts

> > and she is able to interact with everybody she meets

> > during the day - and some days, it doesn't ... and

> > she's left there struggling to make even the simplest

> > request understood - and getting massively frustrated

> > by that inability.

> >

> > This may or may not make sense - i'll chalk it up to

> > lack of caffeine this am - but it's more like a maze

> > than a wall - mom's maze is relatively small & she

> > finds her way out completely from time to time.

> > Grandmother, at the end, was trapped in that maze. I

> > hope mom doesn't become trapped. Right now her

> > emergence from the maze is the only thing keeping me

> > sane.

> >

> > hth

> >

> > Kat

> > 24/7 w/ no relief in sight.

> >

> >

> >

> >

> > __________________________________________________

> >