CHAT ROOM AT 8:30 PM FOR LBD

October 24, 2006

Hi everyone,

I found out today through one of the members on the Lewy Body

Association site of a chat room run through the Alzheimer's Asso.

Room 3 is designated just for LBD...it is at 8:30 at night EST...I

went in tonight and chatted for awhile. If anyone wants the info I

will send it...or figure out how to...it's this long address...

Hope everyone is ok, I had some surgery today so I have been out of

it today...

I don't want to even say this, but, Mom told me tonight that she can

not wear the PURPLE GLASSES...She now says she can't see out of them

at all and she has a headache from them. I just don't know what to

do. She wants to go spend $650.00 for glasses because she thinks

these are no good because she didn't have to pay for them. And we

are supposed to go to the other doctor on Thursday to get

another " FREE " pair for her...she said she doesn't want anything free

and she isn't going to any woman doctor...where do they come up with

these ideas? (I'm not asking seriously) I know the answer, it's

called LBD!!!! I just shake my head sometimes. lol

Well, the pain pill is working...before I fall on my computer, I'm

going to go and fall in bed.. :-)

Carol Incog

November 7, 2006

Carol

I had upteen conversations with my mother over underwear. She would say that

she didn't have any when there was a drawerful. She would then claim that they

weren't hers, that they didn't fit, that someone else had put them there or that

someone had taken her own pairs. It truly drove me nuts.

Eyes are definitely effected by LBD. She could be fluctuating on that area

like the moods that come and go. HOWEVER, that being said, I had a pair of

glasses that were not made correctly. The axis was wrong. I picked up the

glasses and went up north to my trailer. My friends and I went out in the boat

and watched fireworks (it was close to the July holiday). I almost jumped out

of the boat. The fireworks looked so close to me that I was totally FREAKED

OUT. My friends were laughing at me and thought I had too much wine...I was so

upset at my husband for putting us in such a dangerous situation that I

seriously demanded he take me back or I was getting out. I found out after the

weekend that there was something wrong with the glasses and not just that I

needed an adjustment period for the new prescription. Sometimes with LBD there

is truly no way of telling.

My mom was sent to have an eye test where they look into an eye piece and the

screen flashes a light and she has to push the button when she sees the light.

She was clicking and clicking and I was watching the screen. Lights were

flashing and she wasn't clicking and then she would click and click when nothing

happened. I finally said " are you seeing the light when you click the button? "

She said that she thought she was supposed to click the button when she heard

the button click. Someone was doing the test behind her!! I had to explain to

the doctor that really the test was useless as she didn't understand the

instructions with the Lewy body disease.

Good Luck with the many hurdles of lewy.

Kath in Toronto

Mom is Marguerite (everyone calls her Maggie) dx. in 2002 at age 78. Moved to

asst. living for 8 months, then returned to her home (next door to me) with a

live in caregiver for another 1 1/2 yrs. Broke hip Jan 2005 and lived in two

nursing homes, one horrible and one nice. She has been in the present place

since April 2005. She is wheelchair bound due to contractions from not enough

physiotherapy. She is on Razadyne (formerly Reminyl), and Namenda (Ebixa) for

LBD. Seroquel at night only at 25 mg. Thyroid med and a whole slew of vitamins,

pill for constipation, protein drinks/powder and so on. She struggles with

finding the right words (aphasia) though she clearly knows it is the wrong

words, she cannot find the right ones. It is difficult for her to communicate

with me but we have conversations all the same.

" carol.incognito " wrote: