Re: new to the group

November 1, 2004

asked:

Can anyone tell me why it is posting twice when I send?

****************************

Well - when replying, if you click on " reply all " the message will be sent

twice.

March 28, 2005

hello !

Welcome to the group no-one wants to belong to ! LOL.

ANyway - with my Dad - the docs never did diagnose ... they say a

variant of parkinson's but I think they didn't know enought about it one

way or the other. (Actually one Drs attitude was " what's in a name " ).

But some clues are the fluctuating congitivity - from being perfectly

clear (seems to be the case when dr's and outsides are around) to completely

comfused ... to even non-communacative.

Another clue is hypersensitivity to certain drugs ... things as inoccuous

as cough meds.

A " trigger " could have been some meds they gave her in the hospital. For my Dad

it was Ativan at first and then Haldol which is pretty much what did him in. He

went downhill pretty fast after the Haldol. DO NOT under ANY circumstances

let them give her Haldol ... if you even remotely suspect LBD.

HUGS

Donna

>

> Hello,

>

> My mother is seventy years old. She has been in the hospital for

> six-and-a-half weeks. This disease has been suggested to us, but we are not

> aware that LBD is her actual diagnosis because we have other symptoms too.

> My mother was admitted to the hospital with high blood pressure (210/120)

> and dementia issues (thinking my Dad was picking her up for a dentist

> appointment, but he's been dead for 10 years) that have curcumvented into

> having " episodes: that look like seizures " keeping her in bed for at least

> five of these weeks. She has been cathedorized for much of that; wearing

> diapers, and continuing on the road to infections and blood clots. I have

> never imagined in my life that a disease so unknown could exist. I find

> comfort that you all have such hope and admiration for each other and have

> found this to be very important to stand back and take a deep breath. This

> LBD must be new; chemically induced???, as I have not heard of such rapid

> decline (I am 42ish) in the mind's history or have we? Or am I totally

> nieve...???

>

> Thanks be to God for the group,

> -stace

>

> Welcome to LBDcaregivers.

>

March 28, 2005

Hi Donna,

Oh no.., they did give haldol to her at first when she started with these

" episodes/seizures " and she has gone down hill so fast since then! She

walked into the hospital on her own 2/10 (even with the high BP) and now

hasn't taken a step since 2/16! She has been on many different meds since

the 70's and some of the neuroleptics she's been on and that I've read about

can cause the " disconesia's (SP) " ; one being haldol. I pray she is not

confined to a wheel chair now; she always loved to walk! So, so, so, sad;

but glad that she's still understanding my love today.

Thanks,

Stacey

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: New to the group

>Date: Mon, 28 Mar 2005 18:08:51 -0500 (EST)

>

March 28, 2005

Hi Stacey,

quick overview of my case, I'm Kathleen from Scotland, age 47 and have one

sister who 'cared' equally with me and my mum. My dad was diagnosed Feb 2002.

He was diagnosed by a Consultant Physco-Geriatrician....I believe it really

helps to get diagnosis by someone who specialises in mental health for the

elderly, Neurosurgeons are wonderful people but their field is much more

general.

First diagnosis we got from mental assesment tests, question & answer sessions

and descriptions from us of behaviour patterns and symptoms was Vascular

Dementia - a series of mini strokes or trans ischemic attacks - TIA's. My dad

DID have these, his behaviour/personality would become erratic, he'd go into

some sort of strange dramatics, it could range from lack of recognition to

acting out something he thought was going on.....in short it looked like his

brain was having a short-circuit.......which it was.

But towards year two his symptoms became much more far ranging. He suffered

from these strange 'attacks' then would go into a deep sleep phase which was

deep, un-natural and long lasting. He could seem at deaths door in these sleeps

yet up to 48 hours later wake up in bed as if nothing had happened, they usually

followed a night of distrubed behaviour.

He started having visual hallucinations which were so real that he called the

police when home alone to evict the intruders who were sitting on his couch. He

went from a reasonably able & fit 75 year old to someone not able to be home

alone ever again. His condition was incredibly fluctuating - you describe this

with your mum. He could have a really good day one day and appear almost

totally normal, but the next day be in a deep sleep or fall suddenly or go off

on behaviour changes & hallucinations - then the next day be normal again. This

left us thinking did WE have the problem instead of him. I think the

fluctuating behaviour patterns really throws you and is one of the most

difficult to deal with. He also had a lot of stumbling & inexplicable

falls.....he lost his natural 'arm-swing' and eventually his gait became very

shuffling - but that didn't happen till he was in permanent care really.

My dad had a brain scan to rule out CJD and Vascular Dementia. But his brain

DID show very very small stroke damage so our Consultant then reckoned he had

both Vascular and Lewy Body Dementia.

When he presented all the symptoms eventually for Lewy Body he was then

diagnosed as such and put on the relevant medications. The diagnosis is only

based on him being observed in a short stay unit, mental assesment tests,

physical cabability tests, and just observing his hallucinatory

behaviour......in the begining all of this can be negligible so it's difficult

to ACCURATELY diagnose Lewy Body......but if your Consultant knows his stuff

they soon see through the rest and know what they were dealing with.

We too had NEVER heard of lewy Body Dementia - but my goodness we soon became

self taught. Here in the UK it's even less heard of than in the US......but

again our Consultant DID know about it although had not treated many patients,

but the guy was just wonderful and kept us as informed and involved with

treatments as was possible for him to do.

I won't go into every detail here - although it's difficult not to sometimes -

but my dads decline was quite slow. He probably had symptoms of a sort for a

few years before diagnosis, and his decline over the last few years has been

up/down up/down then just down/down down/down......sadly my dad passed away just

last week and we have not yet had his funeral.

It would appear the only way to absolutely & correctly diagnose Lewy Body is

post mortem by taking a sliver of thebrain for analysis, but this was not asked

of us and we were actually quite relieved. It may seem selfish but we had

suffered so much through my dads illness and seen HIM suffer so much that we

could not bear to think about post mortem.

We nursed and tended my dad for 2 years at home but in year three he went into

our Consultants unit which fortunately is near our home and we still visited

every single day. The disease sort of creeps up on you one day at a time, which

I suppose is just natures way of dealing you a tough blow.......try to learn to

just TAKE one day at a time, don't try and look too far ahead as you'll feel

swamped before you've started. Also everyone with LBD goes through it

differently. In retrospect we had a relatively easy passage with my dad in that

he knew us right to the end, we didn't suffer any personality changes and the

bad times were mainly due to agitation and hallucinatory bouts, and also we had

bad times when he got physically ill with infections etc. and had to be

hospitalised. Back then in the short stay unit he'd constantly ask where he was

and why he was there - it's just THE most heart-breaking thing to deal

with.......but you somehow just manage from somewhere to find the strength to do

it.

This board is great for sounding off and gathering information and opinions. My

dad once diagnosed with LBD was put on various drugs all of which worked WELL

for him for a time......so there are good drugs out there, but again every

patient with LBD reacts differently to different drugs. it'll be a bit of an

experiment to begin with if your mum is given drugs for her hallucinations etc.

but bear with it, the good ones do make a big difference to her day to day life

and can make the disease much more bearable to live with.

Go on the web-sites, seek out all the info, arm yourself with all information

that it's possible for you to take in without exhausting yourself over it. Get

a good specialist on-side and then at least when your on the roller-coaster

you'llhave help not to fall off...!!

I only found this board about 6 - 8 weeks ago but have found it a great help and

now I hope to be able to help others for a while. My dad is gone and for now

the hurt is bad, but surely I have learned something along the way that will

still be useful to others.

Wishing you courage in your journey.

Kathleen.

New to the group

Hello,

My mother is seventy years old. She has been in the hospital for

six-and-a-half weeks. This disease has been suggested to us, but we are not

aware that LBD is her actual diagnosis because we have other symptoms too.

My mother was admitted to the hospital with high blood pressure (210/120)

and dementia issues (thinking my Dad was picking her up for a dentist

appointment, but he's been dead for 10 years) that have curcumvented into

having " episodes: that look like seizures " keeping her in bed for at least

five of these weeks. She has been cathedorized for much of that; wearing

diapers, and continuing on the road to infections and blood clots. I have

never imagined in my life that a disease so unknown could exist. I find

comfort that you all have such hope and admiration for each other and have

found this to be very important to stand back and take a deep breath. This

LBD must be new; chemically induced???, as I have not heard of such rapid

decline (I am 42ish) in the mind's history or have we? Or am I totally

nieve...???

Thanks be to God for the group,

-stace

Welcome to LBDcaregivers.

March 28, 2005

Oh Kathleen... thank you for your kind words at your difficult time in your

life! I admire your strength and also find comfort that you can share your

loss. I am so sorry!

Stace

>

>Reply-To: LBDcaregivers

>To: <LBDcaregivers >

>Subject: Re: New to the group

>Date: Tue, 29 Mar 2005 00:37:08 +0100

>

March 28, 2005

Thanks Stacey.

My dads funeral is on Thursday - I'm dreading it, but at the same time wish to

honour him properly and do everything I know he'd like.

I still can't quite believe he is gone.....so so many times in his disease we

thought he was close to death and always he seemed to rally, but eventually it

got the better of him and we knew this time he was not going to recover the

battle.

He did however fight a courageous battle and with a lot of humour at times - he

was a gentleman in the real sense of the word.....a gentle gentle man.

Thanks for your wishes - Kathleen.

Re: New to the group

>Date: Tue, 29 Mar 2005 00:37:08 +0100

>

March 28, 2005

stacey,

my father was 70 years old when this was diagnosed may 2004, and it was

diagnosed by a weekend fillin doctor who said that dad fit all the catergories

based oin what i said. dad had parkinsonian shakes primarily right sided but

was hospoitalized for 5 weeks (2 weeks of it skilled nursing unit for

occupational therapy) dad went in walking with a quad cane and came out needing

a walker. less than 1 year later, he is now bowel incontinent, uses oxygen for

drops in oxygen and blood pressure upon rising and walking. and will use a

wheelchair outsdie of the home. his disease started with hallucinations and

paranoid about 10 years ago accompained by unexplained falls, this got

progressively worse until he asked us to move in iwth him in jan 2003. dad is on

namenda and exelon and zoloft and 325 mg aspirin and that is all the meds he is

on. we stopped his blood pressure medicines when his bp became erratic and his

oxygen level dropped upon rising and moving.

lbd is a very ugly disease and dad went thru his aggressive and sexually

inapporpirate stage the first year we were here. he went so far to pimp me out

to his firend very embarassing.. but taht was not the wrostof what he said and

did. lbd destroys teh mind and the inhibition part of the brain. dad has had 3

mris and each is showing more brain shrinkage, so i know that this disease is

taking its toll.

this place is a very good place to vent adn ask any questions that you may have,

no matter what, feel fee to ask, good luck and hugs sharon m

Date: 2005/03/28 Mon PM 01:22:02 EST

To: LBDcaregivers

Subject: New to the group