(3rd Time's a Charm?)

[Guest guest]

Welcome

Hope we can be some help and support to you. You will find that there

are similarities in everyones' stories. My Mum was living in her own

Condo until May 2004, moved into a Senoirs Living Facility (with

multi-levels of care) into an Independant living apartment, had a major

meltdown and wound up in the hospital in January 2005 and went back to

the Seniors Facility (dementia Unit) in February 2005. My sisters and

I realized this week that it has been a year, just about exactly since

Mum was diagnosed.

Like your Mother, my Mum recognizes us but has great difficulty

carrying on any sort of conversation. She cannot get a complete

thought out in words that we can understand. Her grammar and sentance

structure are fine but the words are wrong. Mum is often sad (who

wouldn't be) and on her " good days " can easlily pass the memory tests

they give for AD. On those days she is extremely depressed about her

living arrangements (most of the others on her floor are worse that she

is).

Mum is on Aricept and Seroquel. The Aricept is supposed to slow down

the progression of the AD side of LBD. There are a couple of other

drugs of this sort that other LO's use. Excelon is one of them and

Nameda (I think). Excelon is supposed to be a sort of AD wonder drug

but it can upset the stomache (as it did with my Mum). My Mum's doctor

is reserving Nameda as an alternate down the road when the Aricept has

lost it's usefulness. I can't say that I notice the Aricept doing Mum

any good but maybe she would be worse w/o it.

Seroquel keeps the hallucinations (at least the really scarey ones) at

bay. Mum still sees things that aren't there. My Dad comes to visit

(no he doesn't), she is having an affair with her companion (I

don't think so), there are dogs or children playing in the air outside

her 9th floor window and there is another room down the hall that they

keep moving her too (and it has exactly her same furniture and

clothes).

Ohter than the medication for Thyroid and bone density, Mum is on

nothing else.

We believe that the reason Mum could not and will never " bounce back "

is because in the hospital last January she was given several doses of

Haldol when she started kicking, biting, screaming due to scarey

hallucinations.

Was this given to your Mother? Or did she get Ativan. The majority of

caregivers on this sight can tell you volumes of bad reactions to these

2 drugs when they wer given to their LO's.

My Mum is almost 76 and up until a year ago was extremely active and

healthy. How old is your Mother? I have 2 sisters who share the care

of Mum and we compare notes and cry on each others shoulders at least

weekly. Have you got family support and help?

Take lots of notes to your Mother's doctor. It is very possible she

could have a really good day or " showtime " on the day of her

appointment. This is another tell-tale sign of lewy bodies. Keep a

journal between appointments, list behaviours, reactions to drugs etc.

Always keep and take with you to all appointments an up to date drug

list from the pharamcy.

Anyway - I have gone on far too long. I kind of got on a roll.

Good luck - and again welcome.

(cg to mother Margaret, Toronto, ON, Canada - diag LBD Jan 05)

--- Ruff wrote:

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OK - going to try this again.. Emailed before and the message somehow

got lost... (note to self: SAVE EM)

My name is . My mother, Maureen, has been diagnosed with

Vascular Dementia caused by mini-strokes (but she was diagnosed with

other things too - so I wasn't satisfied, did some googling and now I'm

almost certain that it's LBD) Good timing too - she has an appt. w/ her

neurologist on Monday - so intend to discuss this option with him...

Some History:

I noticed changes going back to about 2001. My mother fell and broke

her wrist - since then she was very cautious about her walking, but it

got progressively worse. We thought it was due to her fall and she

being overly cautious. But now looking back, when did the caution end

and the shuffling due to LBD (or whatever) begin? She progressed to

shuffling w/ the help of a cane by May 2005...

The other change noticed for some years now was the personality

change. My mother went from a dynamic, outgoing individual to a more

reclusive, fearful one. She has tons of friends, but stopped

calling/meeting them. Was uncomfortable in large crowds - stopped going

to the annual family parties b/c the crowds were too big.

And of course the " senior moments " that led to constant calls asking

me questions about upcoming doctor appt., etc. No sense of time. " Good

days and bad days " .

January 2005 - mom & I went to our annual trip to Dom. Rep.

(tradition since my father passed away in 1996) We were together 24/7

and then I really noticed the little changes. Figity - can't sit still.

Fearful - scared to go alone to the restaurant to get her coffee.

Crying spells in the AM - my mother was not the crier in the family,

that position was held for me. Extremely fragile. Stopped wearing

deoderant. She had a panic attack on the plane. She had hallucinations

on the plane - looking out the window she envisioned a town - a cloud

town.

When we returned from the trip we started to visit with doctors. She

kept passing the Alzheimers test. Her MRI showed more white matter...

but not an MRI similar to those w/ AD. We eventually moved her to Mass.

General Hospital's dementia unit team - b/c we were not happy with the

other doctors and they were not specialists.

* May 2005 - Mom was living on her own in her condo. We got meals on

wheels, home health aide to help with cleaning, and a life line. Her

brother passed away and it was very traumatic for her - she became

extremely depressed.

* June 2005 - We got companions to be with her during the day - to

walk with her to church and stores so she didn't fall. My sister did

her food shopping. I started to take care of her finances. The doctor

tried her on Aricept - which made her conditions worse. She was calling

me constantly and asking me the same questions over and over.

* July 2005 - After her falling asleep and living prunes on the stove

and the fire dept. visiting her condo we knew she could no longer live

alone. We moved her to an assisted liv. facility in the neighborhood -

not dementia unit - more independant. She enjoyed that place for 3

months.

* October 2005 - She was in near hysterics. Crying constantly. See my

deceased father. Threatening to run away - she packed her bags. She

wanted to die. We got scared and called her Psychiatrist and he

suggested her going to a hospital to be observed (BAD MOVE - we SHOULD

have just moved her into another ALF w/ a Dementia unit).

* November 16, 2005 - After 3 weeks in the hospital for observation

and to receive a number of tests and was given 3 different new meds

(she was taken off some others, others were kept on) The 3 new ones

were Risperadone, Remiron, and Razadyne. Mom left the hospital to move

into a ALF w/ dementia unit. She WALKED into this hospital but had to

leave in a WHEELCHAIR. We were told it was temporary. She hasn't walked

since...

* November 24, 2005 - After a week at the ALF I arrived to p/u my

mother for Thanksgiving Dinner. Found her in the wheelchair - slumped

over, drooling, limbs all rigid. The nurses never called me to tell me

this change. She was like this for over 24 hours. We immediately

brought her to the hospital (I thought she had a stroke). They took her

off all the drugs. The discharge notes were not very conclusive. But

now I'm thinking she may have been victim to neuroleptic malignant

syndrome...

* November 30, 2005 - Moved into a NH for rehab. We were hoping she'd

get better to move to the ALF - no luck. She will now stay at the NH

for good. She's still in a wheelchair, unable to walk. She is

constantly moving her right side. Leg up, down, up, down. She knows who

we are. She can't have a conversation. Only yes, no answers.

Monday we're meeting with her neurologist. He hasn't seen her since

November. I'd like to discuss the possibility of LBD. It's the only

disease that my mother has ALL the symptoms...

I'm glad I found this site. I thought about LBD after reading the

www.lewybodyjournal.org site, and then reading the symptoms of

www.lewybodydisease.org site. Some relatives feel 'what's the point?' -

either way it's progressive and no cure. But mom is only on Seraquil -

maybe other meds would help some... It's worth a shot!

Any suggestions? Any observations of my EM? All welcome - and thank

you in advance for your responses!

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