Re: New Member Introduction

[Guest guest]

Aimee

welcome to our family although i am sad you had to look for us. my name is

sharon m from pensacola florida and my husband (then fiance') donnie and i

moved to pensacola from nashville tenn in jan 03 and caregave for my father

until his death 9/25/05.

first of all, you are one great lady, to pursue and investigate lbd and to

be so eager to help her any way you can is remarkable and i admire you

immensleuy. LBD is an awful disease. the worst part of it, is the fact

that cognitin and awareness fluctuates unlike alzhiemers which when they

lose someting it is gone and the patient doesnt miss it. but with lbd, their

world fluctuates and they know they shoujld be able to wipe their butts, cut

their food etc. which makes depression a big thing iwth lbd.

as for activities she can do, anything is ok, as long as she can do it.

their ability for numbers and making sentences declines rapidly so you may

not be albe to do crossword puzzles or simple jigsaw puzzles, crafts for

kids, glueing things putting stamps and labels on al lyour envelops etc,

what medicines is she on> where do you all live?? there is a list of meds

on the group home page that are bad for lbd people as some medicines that

help the pd (parkinson disease) react badly for lbders' make sure all her

paperwrok is in order, living will, will, medical directive etc. becuase

when the mind starts to decline it will be too late. we got dad's done in

teh nick of time, the first 2 times he met the lawyer he was ok but when

the lawyer came back to sign the papoerwork dad was worse and the lawyer

said had he not already been here twice and heard what dad wanted he would

not have been able to complete the paperwork as daddy was confused. if she

is taking exelon for the dementia they ahve a wonderful cg support system

1-877=memory4 that you can call and sign up for, they send out newsletters

and stuff to help cg (caregivers ) out with, including a journal. it is

very imporatnt that you all journal everything, reactins to medicines,

good days, bad days, changes in her, etc, becuase that will help the doctor

and you understand her disease progression. no medicine is avialable to

reverse the disease. only meds to slow down the progression of hte disease.

can she walk with out assistance. does she have trouble chewing? does she

have hallucinations (seeing animlas and people that arent there)? does she

shuffle her feet when she walks, possibly leaning towards one side or the

other? does she fall often???

i know you will find this gourp has helpful and informative as i did, we

have poeple from all over the world here and we all want you to share your

story with us, feel free to vent, scream, cry, laugh, stomp your feet ,

wahtever it takes when you write us, ( your fiance may wish to join the

group as well) we understand and there is no topic off limits, we have

discussed before, sexual inappropraitness, foul langugae, dr jekyll mr hyde

mood swings, medicines, poop fingerpainting (using poo and their hands and

touching everything walls, etc) even funny stories or sentimental stories,

feel free to do the same, you are not alone in this journey we will be here

with you and next to you teh whole time, hugs sharon m

-- New Member Introduction

Hello - I am joining because my fiance's mom was diagnosed with LBD in July

at the age of 64. She was mis-diagnosed last year with depression and it

wasn't until she " bottomed out " and was hospitalized in an Alzheimer's ward

of a nursing home for 3 weeks that we learned about LBD. Thankfully, she

responded well to her medications and has been home ever since. However, we

have noticed a plateau and a decline after her improvement. She doesn't have

any memory problems but she exhibits mostly PD symptoms. Her left leg had

resting tremors and it's spread to her right leg too. She is too shaky to

apply make up or cut food. She also has severe social and anticipatory

anxiety. A woman who once was very out going has become a house bound

recluse. She dines out occasionally but finds being a Walgreen's or Pier One

too overwhelming and can stay only 10 minutes.

She is an absolutely terrific lady - warm and loving and resilient. I'd

like to learn more about the disease and gather ideas on what else we can do

to support her and possibly improve her day to day life. Right now, my

fiance's mom goes to counseling every 3 weeks and doesn't exercise too much

(because of her shakiness). She used to be a big reader but her eyes get

tired after only a few minutes. Watching tv sitcom re-runs seems to suit her

best because she doesn't need intense concentration. Can we introduce

crossword puzzles? What activities should we encourage her to try?

Many thanks in advance for sharing your experiences with me and -

Aimee

---------------------------------

Yahoo! Photos

Ring in the New Year with Photo Calendars. Add photos, events, holidays,

whatever.

[Guest guest]

Hello Aimee,

I was especially sad reading your post as your mother experience with

LBD mirrors my mothers almost exactly. Mom was dx'd with depression in

her early 60's and at 63 she was dx'd with LBD.

I'm curious about how they determined how your mom was dx'd with LBD

because you wrote that she doesn't have any memory problems.

Please do read all you can about the meds our Loved Ones LO take as this

can make a big difference.

Hang in there.

Courage

[Guest guest]

Welcome Aimee,

You sound like a good friend for you boyfriend. Hopefully you can find a lot

of into here.

Click on the web site under my name and you can click on Links. You will find

lots of info there.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

New Member Introduction

Hello - I am joining because my fiance's mom was diagnosed with LBD in July at

the age of 64. She was mis-diagnosed last year with depression and it wasn't

until she " bottomed out " and was hospitalized in an Alzheimer's ward of a

nursing home for 3 weeks that we learned about LBD. Thankfully, she responded

well to her medications and has been home ever since. However, we have noticed a

plateau and a decline after her improvement. She doesn't have any memory

problems but she exhibits mostly PD symptoms. Her left leg had resting tremors

and it's spread to her right leg too. She is too shaky to apply make up or cut

food. She also has severe social and anticipatory anxiety. A woman who once was

very out going has become a house bound recluse. She dines out occasionally but

finds being a Walgreen's or Pier One too overwhelming and can stay only 10

minutes.

She is an absolutely terrific lady - warm and loving and resilient. I'd like

to learn more about the disease and gather ideas on what else we can do to

support her and possibly improve her day to day life. Right now, my fiance's mom

goes to counseling every 3 weeks and doesn't exercise too much (because of her

shakiness). She used to be a big reader but her eyes get tired after only a few

minutes. Watching tv sitcom re-runs seems to suit her best because she doesn't

need intense concentration. Can we introduce crossword puzzles? What activities

should we encourage her to try?

Many thanks in advance for sharing your experiences with me and -

Aimee

---------------------------------

Yahoo! Photos

Ring in the New Year with Photo Calendars. Add photos, events, holidays,

whatever.