Re: My Mum

[Guest guest]

Hi ,

My name is Gourete and I live in Toronto as well. My mom has had LBD

for over 4 years now. Welcome to the group.

Have your mothers doctors ever prescribed Aricept for her? Have they

ever spoken to you about her taking a low dose of Seroquel? This med

helps with the hallucinations/agitation. My mother takes very low doses

of Seroquel, Aricept and Requip for her parkinson's.

Please let us know who things go with her next doctors appointment.

Hang in there.

Gourete

/Ed wrote:

>

> Hi

>

> I joined this group about 3 weeks ago, shortly after the second time

> doctors, who have been evaluating my 74-year-old mother, mentioned

> LBD as a possibility for her " condition " . The symptoms are so like

> Mum's it is scary. The only difference I can see is that for some

> reason my mother has had a sudden acceleration in symptoms.

>

> Up until about 3 weeks ago, my mother was showing what I would call

> fairly mild to moderate Alzheimer's and Parkinson's type symptoms.

> The specialist she consulted staring about 3 years ago, did feel

> there were that there were some indications of both diseases. She

> was treated first with Exelon (for the Alzheimer's symptoms) but it

> made her extremely nauseous so her doctor decided to treat the

> Parkinson's instead with Sinemet. We noticed small progressive

> changes in Mum over the next couple of years, some, of which we put

> down to a move from her house to a condominium. She had trouble

> writing things down (diminished fine motor control) and when she did

> get them written down, she couldn't read her handwriting later. She

> claimed her dog was becoming too hard to handle and she had fallen a

> couple of times while walking her. She stopped playing bridge

> because she could not keep track of the bidding. She got lost

> driving to my house a couple of times (a route she had driven for

> years). Mum began to shuffle and after a lifetime of looking taller

> than her 5'5 " because of great posture she became stooped. At the

> time, my sisters and I put most of this down to regular aging.

>

> Last Spring Mum decided that her Alzheimer's symptoms were getting

> worse and that because she was no longer driving (she has Retinitus

> Pigmentosa) she couldn't get to enough activities so she was bored.

> She believed the time had come for her to move to a retirement

> residence where there would be lots of activity and should the time

> come when she could no longer take care of herself, they could look

> after her. So in May Mum moved to a beautiful suite (independent

> living) in a senior's facility.

>

> Here's where things started to speed up a bit. From May until

> December we noted that her dreaming was becoming far more vivid, she

> started having more trouble finishing her sentences when telling us

> something and then she would become impatient when we asked for more

> information. She started to cry at the drop of a hat and be

> frightened about unknown things. She became disorientated regarding

> time. She would fall asleep in the middle of the day, be awake at

> night, miss appointments or wait all day for someone to pick her up

> for something on the wrong day.

>

> We took Mum to her GP for a full physical in November and made sure

> her doctor was aware of all this. After performing all the usual

> tests, her doctor discovered that her thyroid level was very low.

> She has been on medication for her thyroid for over 20 years. Mum's

> doctor told us that this might account for some, if not all of Mum's

> symptoms but before she would adjust the medication we needed to be

> sure Mum was actually taking the original prescription. We had the

> staff take over the dispensing of her pills in order to insure that

> she was getting them.

>

> After 6 weeks of making sure that she was getting her Thyroid

> medication, she returned to the doctor for another blood test. The

> level was still very low so the dosage was increased. We were told

> that we should see a dramatic improvement in Mum's alertness almost

> immediately. This was Christmas Eve.

>

> On Jan 16 Mum woke up in the middle of the night, was extremely

> confused and didn't know where she was. She picked up the phone and

> managed to get the operator to understand that she was confused and

> lost. The operator put her through to the police and the police

> operator talked with her, calmed her down, finally managed to get out

> of her the name of her daughter (my sister) and the street where she

> lived. The police called my sister and the situation was got under

> control…someone from the residence went immediately to Mum's suite

> and reassured her until my sister could talk to her.

>

> We spoke to Mum's GP in the morning and she arranged an appointment

> for Mum to go back to see the Geriatric specialist in February. We

> spoke to the residence about keeping a closer eye on Mum until she

> saw the specialist and we agreed that as she seems to be showing more

> frequent confusion it would probably be prudent to keep her from

> wandering outside the building on her own for a while. I went to

> visit Mum on the 19th and except for having to demonstrate how to use

> the " speed dial " on her telephone for the umpteenth time, she seemed

> fine.

>

> Early in the morning (3:00AM) on the 21st Mum was discovered by the

> nighttime security with her coat on over her nightgown, purse in hand

> leaving the building. When he brought her inside and tried to get

> her back to her room she completely " freaked out " on him. By the

> time my sister got to her Mum was talking gibberish to a chair,

> lashing out at anyone who came near her. " The people " were holding

> her prisoner, trying to poison her, doing other bad things to her

> etc. This was behavior that none of us had ever seen in our mother.

>

> We took her to the hospital where her bizarre behavior continued.

> She could not come out with anything that made sense. Grammatically,

> her sentence structure was good but the words were wrong. She

> continued to lash out at " the people " and watch everyone with a

> suspicious look. At one point she started to sing at the top of her

> lungs and then she broke into fits of giggles. (Mum is normally

> fairly quiet).

>

> This was the first time Lewy Bodies Dementia was mentioned. Over the

> course of the next few days (in hospital), the staff had to restrain

> Mum on several occasions because she was trying to keep them " the

> people " from hurting her and all the others. The doctors took her

> off the Sinemet and her violent outbursts and paranoia seemed to

> lessen somewhat. Mum was still having some hallucinations but from

> what we could understand they were dogs or children and she quite

> enjoyed them. Mum was still frightened quite frequently, but rather

> than being violent, she would cry. She was very hard to console at

> those times. Her forgetfulness was more pronounced than I had ever

> seen it. She remembered us (her 3 daughters), her brother and close

> friends but she couldn't remember how to use toilet paper or her

> toothbrush or soap in the bath. After 10 days of being off the

> Sinemet the doctors decided to try her back on it. Almost from the

> first dose, the bizarre behavior, including the paranoia returned.

> As a family, we had never noticed that the Sinemet had been really

> doing anything for her so we jointly refused the medication.

>

> After 2 and a half weeks of the hospital, Mum has returned to the

> senior's residence but now on the " Memory Floor " instead of

> independent living. We still don't know exactly what happened. We

> got the impression that the doctor's don't really know either. Her

> discharge report mentions possible stroke (the CT and MRI showed

> nothing major), and Lewy Bodies. The most information we got was

> from the geriatric nurse who felt that based on the history we

> provided, Mum's sudden acceleration of LBD symptoms make have been

> caused by a combinations of stresses in her life (thyroid level,

> Christmas, her move last spring, constipation, mini-stroke etc.).

>

> Long story but where do we go from here? We (my sisters and I) still

> have Mum not taking the Sinemet and we have noticed that her fine

> motor skills are almost non-existent and her stiffness has

> increased. The doctor at her residence has prescribed a minimal dose

> of resperidal (0.25mg twice a day) to try to keep the demons at bay.

> We are seeing Mum's original specialist on Monday and would like to

> know what we should be asking. Any suggestions? I find her

> depression and her fears more upsetting than anything else does.

> They keep telling me I shouldn't get upset in front of her, but

> sometimes I get so frustrated trying to assure her that no one wants

> to hurt her, I just can't help it. Funnily enough when I start to

> cry she stops momentarily worrying about herself and tries to comfort

> me. The residence seems to be more concerned about the possibility

> of her being violent again. They have as much as said that if she

> disturbs or hurts the other residents, we will have to find another

> place for her.

>

>

> (Toronto, Ontario)

>

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

> ---------------------------------------------------------------

>

[Guest guest]

sarah,

forgive my delay as i was out of pocket for 3 weeks and i am no w catching up on

posts and emails.

sinemet was a nono for my dad, my dad complained that the little man in his head

( what he calls LBD) was getting out of control and he hated him. he was much

more agitated and even hateful at times so i stopped it, this went on for 3 days

as he took the meds and was almost a full 2-3 days before it seemed to be out of

his system. he is on exelon and now namenda for his symptoms, the hospice

nurses tell me that each of these meds will be effective for about one year then

ay have reverese effects after that, and that appears to be true with the exelon

we have only been on namenda for 2 monthsa nd so far it seems to effecting him

in a positive way. time will tell good luck sharon m

Date: 2005/02/04 Fri PM 01:00:31 EST

To: LBDcaregivers

Subject: My Mum

Hi

I joined this group about 3 weeks ago, shortly after the second time

doctors, who have been evaluating my 74-year-old mother, mentioned

LBD as a possibility for her " condition " . The symptoms are so like

Mum's it is scary. The only difference I can see is that for some

reason my mother has had a sudden acceleration in symptoms.

Up until about 3 weeks ago, my mother was showing what I would call

fairly mild to moderate Alzheimer's and Parkinson's type symptoms.

The specialist she consulted staring about 3 years ago, did feel

there were that there were some indications of both diseases. She

was treated first with Exelon (for the Alzheimer's symptoms) but it

made her extremely nauseous so her doctor decided to treat the

Parkinson's instead with Sinemet. We noticed small progressive

changes in Mum over the next couple of years, some, of which we put

down to a move from her house to a condominium. She had trouble

writing things down (diminished fine motor control) and when she did

get them written down, she couldn't read her handwriting later. She

claimed her dog was becoming too hard to handle and she had fallen a

couple of times while walking her. She stopped playing bridge

because she could not keep track of the bidding. She got lost

driving to my house a couple of times (a route she had driven for

years). Mum began to shuffle and after a lifetime of looking taller

than her 5'5 " because of great posture she became stooped. At the

time, my sisters and I put most of this down to regular aging.

Last Spring Mum decided that her Alzheimer's symptoms were getting

worse and that because she was no longer driving (she has Retinitus

Pigmentosa) she couldn't get to enough activities so she was bored.

She believed the time had come for her to move to a retirement

residence where there would be lots of activity and should the time

come when she could no longer take care of herself, they could look

after her. So in May Mum moved to a beautiful suite (independent

living) in a senior's facility.

Here's where things started to speed up a bit. From May until

December we noted that her dreaming was becoming far more vivid, she

started having more trouble finishing her sentences when telling us

something and then she would become impatient when we asked for more

information. She started to cry at the drop of a hat and be

frightened about unknown things. She became disorientated regarding

time. She would fall asleep in the middle of the day, be awake at

night, miss appointments or wait all day for someone to pick her up

for something on the wrong day.

We took Mum to her GP for a full physical in November and made sure

her doctor was aware of all this. After performing all the usual

tests, her doctor discovered that her thyroid level was very low.

She has been on medication for her thyroid for over 20 years. Mum's

doctor told us that this might account for some, if not all of Mum's

symptoms but before she would adjust the medication we needed to be

sure Mum was actually taking the original prescription. We had the

staff take over the dispensing of her pills in order to insure that

she was getting them.

After 6 weeks of making sure that she was getting her Thyroid

medication, she returned to the doctor for another blood test. The

level was still very low so the dosage was increased. We were told

that we should see a dramatic improvement in Mum's alertness almost

immediately. This was Christmas Eve.

On Jan 16 Mum woke up in the middle of the night, was extremely

confused and didn't know where she was. She picked up the phone and

managed to get the operator to understand that she was confused and

lost. The operator put her through to the police and the police

operator talked with her, calmed her down, finally managed to get out

of her the name of her daughter (my sister) and the street where she

lived. The police called my sister and the situation was got under

control…someone from the residence went immediately to Mum's suite

and reassured her until my sister could talk to her.

We spoke to Mum's GP in the morning and she arranged an appointment

for Mum to go back to see the Geriatric specialist in February. We

spoke to the residence about keeping a closer eye on Mum until she

saw the specialist and we agreed that as she seems to be showing more

frequent confusion it would probably be prudent to keep her from

wandering outside the building on her own for a while. I went to

visit Mum on the 19th and except for having to demonstrate how to use

the " speed dial " on her telephone for the umpteenth time, she seemed

fine.

Early in the morning (3:00AM) on the 21st Mum was discovered by the

nighttime security with her coat on over her nightgown, purse in hand

leaving the building. When he brought her inside and tried to get

her back to her room she completely " freaked out " on him. By the

time my sister got to her Mum was talking gibberish to a chair,

lashing out at anyone who came near her. " The people " were holding

her prisoner, trying to poison her, doing other bad things to her

etc. This was behavior that none of us had ever seen in our mother.

We took her to the hospital where her bizarre behavior continued.

She could not come out with anything that made sense. Grammatically,

her sentence structure was good but the words were wrong. She

continued to lash out at " the people " and watch everyone with a

suspicious look. At one point she started to sing at the top of her

lungs and then she broke into fits of giggles. (Mum is normally

fairly quiet).

This was the first time Lewy Bodies Dementia was mentioned. Over the

course of the next few days (in hospital), the staff had to restrain

Mum on several occasions because she was trying to keep them " the

people " from hurting her and all the others. The doctors took her

off the Sinemet and her violent outbursts and paranoia seemed to

lessen somewhat. Mum was still having some hallucinations but from

what we could understand they were dogs or children and she quite

enjoyed them. Mum was still frightened quite frequently, but rather

than being violent, she would cry. She was very hard to console at

those times. Her forgetfulness was more pronounced than I had ever

seen it. She remembered us (her 3 daughters), her brother and close

friends but she couldn't remember how to use toilet paper or her

toothbrush or soap in the bath. After 10 days of being off the

Sinemet the doctors decided to try her back on it. Almost from the

first dose, the bizarre behavior, including the paranoia returned.

As a family, we had never noticed that the Sinemet had been really

doing anything for her so we jointly refused the medication.

After 2 and a half weeks of the hospital, Mum has returned to the

senior's residence but now on the " Memory Floor " instead of

independent living. We still don't know exactly what happened. We

got the impression that the doctor's don't really know either. Her

discharge report mentions possible stroke (the CT and MRI showed

nothing major), and Lewy Bodies. The most information we got was

from the geriatric nurse who felt that based on the history we

provided, Mum's sudden acceleration of LBD symptoms make have been

caused by a combinations of stresses in her life (thyroid level,

Christmas, her move last spring, constipation, mini-stroke etc.).

Long story but where do we go from here? We (my sisters and I) still

have Mum not taking the Sinemet and we have noticed that her fine

motor skills are almost non-existent and her stiffness has

increased. The doctor at her residence has prescribed a minimal dose

of resperidal (0.25mg twice a day) to try to keep the demons at bay.

We are seeing Mum's original specialist on Monday and would like to

know what we should be asking. Any suggestions? I find her

depression and her fears more upsetting than anything else does.

They keep telling me I shouldn't get upset in front of her, but

sometimes I get so frustrated trying to assure her that no one wants

to hurt her, I just can't help it. Funnily enough when I start to

cry she stops momentarily worrying about herself and tries to comfort

me. The residence seems to be more concerned about the possibility

of her being violent again. They have as much as said that if she

disturbs or hurts the other residents, we will have to find another

place for her.

(Toronto, Ontario)

Welcome to LBDcaregivers.

[Guest guest]

Dear Diane,

i am so sorry to hear about your Mum, and every day i pray for some miracle cure

or medicine that will help our loved ones with lbd. many drugs are available to

ease their discomfort but unfortunately as of yet there is no known cure. you

can gain alot of insight from everyone in this group, we are each in different

but similar situations . i pray for you and your mum, please love her and go to

her every visit touch her, and know that deep down she feels your love and

caring, the disease makes her mean and ugly, but deep down she cannot control

her actions and responses. allowing your love to show, will reach her thru the

drpths of lbd hugs sharon m

Date: 2005/02/22 Tue AM 07:05:49 EST

To: LBDcaregivers

Subject: my Mum

Hi there

My name is Diane and I live in Surrey with my family.

My Mum was diagnosed with LBD about 4 years ago whilst in hospital for tests

realating to a parkinsons disease related illness.

She also has Rheumatoid Arthritis.

She started to hallucinate and over the course of the last four years has

deteriorated a lot. She hadly recognises us now, maybe just me and my Dad.

She went into a permanent nursing home nearly two years ago.

She in now only 69 years old.

My Dad is 70 and he lives alone just about 10 minutes walk from us and he visits

my Mum twice a week, still does all of her washing as he wants too.

I had a bay girl 18 months ago and my Mum has never really acknowlkledged her as

a Granddaughter> I do take Lucy to visit her once a week. It is really all I can

bear now as she does not speak or acknowledge us at all and sometimes can shout

and scream which upsets my daughter, and is terribly hard to deal with.

She vaguely recognises my Dad, my older son and myself but thats about all.

She is double incontinent and has lost a lot of weight. She weighs about 6 and a

half stone. She does not eat much, some days nothing at all but the nursing home

give her Complain and Ensure drinks.I would like to know more about this disease

and whether there is any chance out there of her ever improving. You can but

live in hope. Its my Mum and terribly hard to accept this awful disease

thanks for listening

Diane x

Diane Bates

[Guest guest]

Hi Diane,

my names Kathleen & I live in Scotland. I'm a relatively new member to this

site - just found it 2 weeks ago.

My dad has LBD.....he was diagnosed first of all 3 years ago with Vascular

Dementia (but had been having small symptoms for a couple of years beforehand)

and appeared to be having a series of TIA type mini strokes. However one year

into this diagnosis it was then changed to Lewy Body. He started to develop

typical Paranoia & Hallucination type symptoms, these were very real for him and

very upsetting for us.....at this point he lived at home with my mum as his main

carer, she is now 78 and he is 79.

My sister and I went on alternate days to their house (there's only the 2 of us)

since day one of his diagnosis, we had taken the attitude that we were in this

as a family and my mother would never be alone to shoulder the burden and my

dad would have all the help we could give him and find for him. The first year

worked well enough although it was tough going, no two days would be the same

with him and you learned like alchoholics do to take it one day at a time.

But the 2nd year after diagnosis was very much harder. Through various changes

of medication my dad started to suffer more PHYSICAL symptoms (which we now know

are Parkinson related) and he suffered periods of deep unexplainable sleep where

we found it impossible to get his medication into him, get him to eat or keep

him hydrated. These spells usually resulted in an emergency admission to

hospital to re-boot his medication etc. and deal with the dehydration and

impacted bowel problems that had arisen. These admissions were first of all to

a general hospital then to a specialist dementia unit once the physical problems

were cleared up. To say it was hard work and very tense & traumatic doesn't

even begin to describe it. We became prisoners of my dads disease just as

surely as he did.....sometimes it was hell just getting up in the morning

knowing the day ahead of us to be so difficult. And gradually because the

nights were hard for my mum, she was losing sleep and was exhausted, and we'd

then have to take on the running of THEIR home as well as our own. We cleaned,

cooked, shopped & paid their bills, organised prescriptions, oversaw any medical

appointments - of which there were many - and generally just became robotic in

our combined exhaustion. All of this while attempting to made my dads day more

livable by trying to get him out in the car and do something that would

stimulate and add to his day.......again sometimes this worked well, but a lot

of times it didn't.

So I can COMPLETELY sympathise with your feeling of frustration, tiredness,

hoplessness and exhaustion physically and emotionally - sometimes I find the

emotional side of things REALLY difficult to deal with.

After a severe crisis at home where my dad got out in the night and injured

himself and my mother we had to accept that his illness had gone beyond what we

could cope with, to be honest I think we left this decision much later than we

probably SHOULD have, but we could not bear the thought that my dad would some

day leave his own home to be cared for elsewhere. And at that point we had also

installed a huge home-help team of carers etc. but still we could not keep on

top of things. My dad is now in a Consultant led Dementia Unit close to our

home, his move there was probably the toughest thing we've all yet had to go

through, and it took us a good 6 months to accept that he COULD be looked after

by other people and was probably much less affected by the change than WE

were..!! He has now been in permanent care for exactly one year. He has had

many ups & downs but we are firm in our opinion that we eventually did the right

thing and on the whole we are happy with his care and that we have Consultant

input, a full ward team, and the general ward doctor on hand for his many chest

infections etc.

All I can say to you from my own experience is don't beat yourself up by not

being able to go visit more than you are doing, we all can only do what's

appropriate to our own circumstances, as someone noted on this board just this

morning quote:

" ...we are only responsible for the effort of all this - not the

result " ........I found that quite uplifting..! If you had your mum back in the

whole sense of the word I'm sure she would HATE to see what she's put you

through or rather what her ILLNESS has put you through. Do what you can Diane

WHEN you can......that's all anyone can ask of you, you have an 18 month old

baby and that is exhausting in itself. There's this theory out there though

when your a carer that you should take care of YOURSELF first - hah - whoever

thought of that one has never been a carer I'd bet..!!

My dads condition fluctuates regularly, he can seem to go to deaths door for a

few weeks, he sleeps too much, doesn't eat and doesn't drink enough, then all of

a sudden he comes awake again and starts eating and drinking like normal. He

does however lose weight quite regularly and is probably now around 9 stone 4

lbs (from a 12 stone man) he eats in sporadic bursts as I've just explained but

even when he IS eating he doesn't seem to regain weight. My dad is very sort of

rigid and stiff at times, it's an effort to have him sit down in a chair even

with a nurse's help.....sometimes he doesn't bend well in the middle. I've read

that this rigidity is just 'very fine tremor' too fine to be seen from the eye

and is from the Parkinson side of things, and this fine tremor apparently burns

calories like fury, so that's part of the reason he's not regaining weight.

I can't say at all what you should expect, in the last 3 years my dad has been

ill & close to the brink of death many times, but something always pulls him

back again. We have had many changes of medication while he was still at home,

and each time they worked well but just for a period. I think now we are past

that stage and medications for LBD have run their course and are no longer of

much use. If your mum appears continually upset/agitated/frightened or

depressed though you MUST make the nursing team aware as something quite simple

like an anti-depressant being introduced can make a tremendous difference to

their mood.

I'm sorry to be this long winded but it's difficult to be brief when explaint

Lewy Body and it's many faces.....I constantly research the internet and read

about Lewy Body whenever I can, we can no longer do anything much to prevent the

progress of my dads disease but it helps US to understand things better and to

be better equipped to handle difficult situations with him. I strive always now

to keep my dad calm & happy, constantly bring in old photo albums, little

treats, family videos as he has a tv set of his own in his room with video & dvd

player......he can't really understand too much of what's going on around him

any more but he does know us all (I have one sister) and I think that's

something that will always stay. Every Lewy Body case is different

unfortunately, and the fluctuations and symptoms differ in person to person.

Keep your chin up, read all you can on the internet, visit when you can and

support your dad when you can - as I said before, we all have our limitations

and you can only do your best, no-one can ask more of you than that. Accepting

it all IS the hard part, that's definitely my downfall, I'm constantly

questioning and wondering and hoping....I think to accept is easier really but

it comes easier to some than others.

Your doing what you can for your mum and don't have anything at all to feel bad

about, I hope others peoples stories help you a bit if only to feel that your

not alone in this ugly illness that is Lewy Body Disease.

Love & support from Kathleen.

my Mum

Hi there

My name is Diane and I live in Surrey with my family.

My Mum was diagnosed with LBD about 4 years ago whilst in hospital for tests

realating to a parkinsons disease related illness.

She also has Rheumatoid Arthritis.

She started to hallucinate and over the course of the last four years has

deteriorated a lot. She hadly recognises us now, maybe just me and my Dad.

She went into a permanent nursing home nearly two years ago.

She in now only 69 years old.

My Dad is 70 and he lives alone just about 10 minutes walk from us and he

visits my Mum twice a week, still does all of her washing as he wants too.

I had a bay girl 18 months ago and my Mum has never really acknowlkledged her

as a Granddaughter> I do take Lucy to visit her once a week. It is really all I

can bear now as she does not speak or acknowledge us at all and sometimes can

shout and scream which upsets my daughter, and is terribly hard to deal with.

She vaguely recognises my Dad, my older son and myself but thats about all.

She is double incontinent and has lost a lot of weight. She weighs about 6 and

a half stone. She does not eat much, some days nothing at all but the nursing

home give her Complain and Ensure drinks.I would like to know more about this

disease and whether there is any chance out there of her ever improving. You can

but live in hope. Its my Mum and terribly hard to accept this awful disease

thanks for listening

Diane x

Diane Bates

[Guest guest]

Hello Diane

My name is Sally. I live in Tonbridge in Kent. My dad died Oct 2002. He had

LBD for approximately 8 or so years, although it is very hard to be

specific. It crept up on him for several years and tragically we all failed

to detect the seriousness of it until it all got horrid. It suddenly went on

the rampage and took my dad on a deadly decline in the last 12 months of his

life. He too started with Parkinson's like symptoms - was misdiagnosed,

given the wrong drugs, deteriorated rapidly and ended up in a psychiatric

ward.

It was horrific. I can relate to the grief and despair you feel.

My dad's story is told in one of the articles on the website - there are so

many excellent and informative stories there. Go to the host site and read

up. My dad was 67 when he died.

It's a hell of a roller coaster ride. There is SO much ignorance in the

medical/caring profession about this diabolical condition. LBD is a

destroyer - there is no cure and sadly no specific drug for it either. You

have to 'experiment' with all kinds of combinations of drugs and keep a very

close watch to see if any concoction helps.

I found tremendous hope and support here on this site. These folks here are

just wonderful.

I will NEVER, EVER come to terms with seeing my dad suffer so cruelly. It's

so very bleak BUT here you are with people who understand completely and

give fantastic encouragement and love.

You're doing a great job.

Whatever you want to know ... ask here. We are completely honest and don't

pull any punches!

The shouting and screaming can be part of the whole LBD nightmare - it is

extremely hard to cope with. My dad became a savage animal; biting,

punching, snorting and yelling. It was grotesque. It was also made

profoundly worse because he was given Ativan (epam). It can be a very

bad drug for LBD sufferers. I also know that the LBD got seriously worse

after my dad had general anaesthesia for back surgery. Again, this has

appeared to be a common discovery. We are learning that GA is profoundly bad

for those prone to LBD.

We are all learning together -- glad you found us

Sally