Re: Early onset symptoms

[Guest guest]

Hi Chip again. The following are the earliest changes that I saw in

my mother. Most went undetected until our yearly trip to the

Dominican Republic (last trip was 1/2005) when my mother & I were

together 24/7 for a week. Mom was finally diagnosed with LBD on

2/2006. From 1/2005 - 2/2006 we were at countless doctor's

appointments trying to figure out what was wrong. She kept getting a

different diagnosis with something different every couple of months

until FINALLY it was determined in 2/2006 she had LBD and Amyloid

Angiopathy. (The latter is another untreatable brain disease of the

small blood vessels in the brain that is also found in many with ALZ)

* Comprehension skills deteriorated (started about 2 years prior to

diagnosis) - we would explain things continuously to my mother and

she couldn't comprehend what we were saying. Like we were speaking a

different language when it came to explaining complicated matters

like what to do with my mother's assets. We were explaining that she

needs to get her assets into a trust. The topic went in circles and

nothing came of it b/c mom couldn't comprehend what we were talking

about.

* Hated to be part of large crowds (up to 3-4 years prior to

diagnosis) - mom would avoid going to anything that involved a large

group of people. Even family gatherings, mom would either not want to

go or find it very difficult to go. She'd be so nervous prior to

going. During the party or gathering, she would stick close to me and

not talk as much. Very different from her true nature which was

extremely outgoing and go and purposely talk to everyone and anyone.

* Shuffling (up to 3-4 years prior to diagnosis) - she fell and broke

her wrist and her walking became very cautious. But we can't tell

when the caution ended and the shuffling due to LBD began.

* Became reclusive (up to 4-5 years prior) - mom was always outgoing

and a dynamic individual. Always part of some group or project or

activity. She stopped going to her embroidery class - and they were

paid for - for her to waste the money on these classes is a huge tell-

tale sign. She stopped going to the gym -- stopped swimming, yoga

class, etc. She said she wanted to be by herself more (again, very

unlike her personal nature). She stopped calling and writing to her

friends. She admitted later that she didn't want to say or do

anything stupid in front of them, so instead of reaching out to her

friends in her time of need, she avoided them. Luckily we saw this

and held a surprise birthday party for her and all these friends of

hers showed up and then came back into her life for a short period of

time.

* Falls (years prior...) - mom was always a faller by nature. She'd

trip over a piece of lint. But I'm sure that those falls soon became

a symptom of LBD. But don't know when her regular falls turned into

LBD falls. But they did become more frequent up to a year or two

prior. About a two week occurence. And they were usually bad ones,

outside, off a bus, on the sidewalk, cuts all over her legs and face.

And she would refuse to take a cab anywhere in the city -- it had to

be either walking or by public transportation. The frugal woman that

she was...

* Forgetfulness (2-3 years prior) - She was calling me constantly up

to a year prior with questions on upcoming doctor's appointments,

dates of special events like anniversaries, how to turn on the CD

player to listen to music, etc.

* Fidgity (1/2005) - mom couldn't sit still. In the hotel room she'd

sit on the corner of the bed waiting for me to get ready. She'd cross

her legs, then uncross them, then cross her other leg, then pick up

something, then put it down, then stand up and walk to the table,

etc. etc. -- this was the FIRST time I noticed how fidgity she was.

* Personal Hygene (1/2005) - found out for the first time during the

trip that mom no longer wore deoderant. Why? She felt she didn't need

it anymore... (she did need it...) Later on when she was in an

assisted living I found that she wasn't wearing it again, and when I

went with her to the bathroom, she couldn't remember how to put it

on. She started to put it on like perfume. Then when I pointed

towards her arm pits, she started to put it on between her breasts.

If ever you need a wake up call, that was it! During the trip, she

also wore the same clothes over and over. At first I felt that it was

because most of the rest of her clothes were more summery and maybe

she was cold, but I think it was b/c the summery clothes were more

vacation clothes and not what she was used to wearing daily.

* Delusions (1/2005) - mom's first delusion that I witnessed was on

the plane to DR. She looked out the window at the clouds, and they

turned into a " cloud town " . She was convinced about what she saw.

* Panic Attack (1/2005) - also mom had herself a panic attack on the

plane during that trip. And she had that on her previous trip too -

the trip she took ALONE (yowza!) 7 months prior. She was shaking and

a nervous wreck the whole time. Confusion to where we were going or

for how long we were on the plane. Convinced that we were headed in

the wrong direction.

* Crying spells (1/2005) - First two mornings during our trip I woke

up to find my mother sitting there crying. Mom was never the crier in

the family. She was always the strong one. And she didn't know what

she was crying about.

* Scared (1/2005) - mom was always independent. Previous trips she

would venture out and create adventures for herself, then return to

tell me who she met and what she did. This trip she wouldn't even go

to the restaurant by herself to get herself a cup of coffee.

For my mother's case - I think the personality changes and the

walking issues came before the memory issues. But they were still

close enough together that it's hard to determine. And mom had years

of " showtime " for her family and friends.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

Visit the LBDCaregivers board on the web:

http://groups.yahoo.com/group/LBDcaregivers/

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>

> Hi there Friends,

> Always nice to read your posts and the newsletter i receive.Knowing

that I

> have Lewy Body Demenita, I am researching it a lot on the computer.

I

have read

> the early symptoms but see little on later symtoms or information

on

the early

> on symtoms.