Jump to content
RemedySpot.com

Re: I'm confused and don't know what to do next, if anything

Rate this topic

Guest guest

By Guest guest
in Health, Medicine and Natural Healing 11

 Share

Recommended Posts

Guest guest

Guest guest

Posted
Posted

Hi Tania,

Perhaps the doctor should try zoloft instead of prozac in terms of an

anti-depressant. Prozac didn't do anything for my mom, but the zoloft did help

a lot. The prozac was also making her see double....

Just because your dad had a bad reaction to seroquel doesn't mean that the

doctor shouldn't also try other drugs - Aricept or Excelon have been used with a

lot of 'success' with LBD patients.

There are some members here that may be able to help you find the right doctor.

Sending you strength from NY,

Helene

(Mom 77, 11 years with LBD)

>

>

> Dad (dx with LBD early 2011) has still been having a bad time of it since we

saw his neuro in Sydney around 6 weeks ago. His mood is still down because he

was hoping for some positive news from his neuro, only to have the opposite.

Simon (the neuro) brought up MRI images of Dad's brain and said there was

significant shrinkage/atrophy - much more than expected in someone of Dad's age

and declared that Dad wouldn't get any better...all of this directly in front of

Dad who had his hearing aids in and was very coherent on the day.

>

> But last week was the worst. The docs have been playing around with his

heart/blood pressure meds to help with dizziness and in the midst of all the

'playing around' he had a really bad day, both physically and mentally. He told

Mum he was going to die soon and a while later, Mum found him sitting in the

back yard crying his eyes out. I've never seen my father cry. We have him on

Prozac to help with depression but it's almost as though it's not touching the

surface. Or perhaps it would be much worse without it. We're not sure.

>

> I asked the neuro if Dad could try Aricept because I'd read good things about

it, but as Dad had recently had a very bad reaction to Seroquel, he said he

didn't want to put him on anything else. I could be wrong but I felt that it was

his way of saying " You took him off Seroquel so I'm not trying him with anything

else " , but we took him off it because his reaction was so terrible (hateful

thoughts/expression, extreme depression, inability to sleep, etc). So now, he is

on NO meds at all for Parkinson's or LBD and I'm worried he's pining away more

than ever. His appetite has decreased ever so slightly, his shakes are worse

(previously controlled my meds such as Sinemet) and his mood has gone

significantly downhill. He is more aggressive (verbally), particularly towards

my mother and seems to want to engage less with me, his only daughter.

>

> The neuro mentioned above is the one who diagnosed Dad with LBD earlier this

year but I'm wondering if the diagnosis is even correct. From what I can tell,

the significant indicator of LBD is hallucinations. Am I right in saying this?

Dad has only had one or two instances that could be described as hallucinations

and they were very minor. No children or aliens climbing walls...nothing even

close. He thought that the flowers on a greeting card sitting on the mantle were

from the front garden. That's about as close as he has come to a hallucination.

Could it be that Dad has Parkinson's Dementia? His body seems to be the thing

giving up the most; difficulty walking, getting in and out of chairs/bed/car,

etc. I know people with LBD have both good (coherent/cognizant) and bad days and

Dad does have those. But as far as hallucinations go, if he has had any, they

were very minor. Do they often start out minor and worsen with time or are they

usually the same, dreadful ones from start to finish?

>

> I have so many questions right now but I don't want to confuse things.

>

> Should I seek another opinion from another neurologist? I wish there was

someone nearby (perhaps Sydney area) who specialised in LBD but I don't know of

anyone.

>

> I can handle (just) the thought of Dad passing away one day and I can handle

myself or other family members being stressed. What I can't handle is hearing of

my father crying and believing he is going to die soon.

>

> Sorry if this is jumbled. I've been coping but desperately wanting advice from

those who know so much, ie. you in this group.

>

> Many thanks in advance.

>

> Tania.

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Do you have a teaching hospital near you where they train doctors? Usually

that is a good place to look for very knowledgeable and up to date

doctors. I would suggest you research the neurologists and look for one or

a group that specializes in PDD and LBD or a least stated they are quite

familiar with LBD. Definitely need a second opinion if the neuro is afraid

to try any new meds now.

Luck,

Pat M.

> **

>

>

>

> Dad (dx with LBD early 2011) has still been having a bad time of it since

> we saw his neuro in Sydney around 6 weeks ago. His mood is still down

> because he was hoping for some positive news from his neuro, only to have

> the opposite. Simon (the neuro) brought up MRI images of Dad's brain and

> said there was significant shrinkage/atrophy - much more than expected in

> someone of Dad's age and declared that Dad wouldn't get any better...all of

> this directly in front of Dad who had his hearing aids in and was very

> coherent on the day.

>

> But last week was the worst. The docs have been playing around with his

> heart/blood pressure meds to help with dizziness and in the midst of all

> the 'playing around' he had a really bad day, both physically and mentally.

> He told Mum he was going to die soon and a while later, Mum found him

> sitting in the back yard crying his eyes out. I've never seen my father

> cry. We have him on Prozac to help with depression but it's almost as

> though it's not touching the surface. Or perhaps it would be much worse

> without it. We're not sure.

>

> I asked the neuro if Dad could try Aricept because I'd read good things

> about it, but as Dad had recently had a very bad reaction to Seroquel, he

> said he didn't want to put him on anything else. I could be wrong but I

> felt that it was his way of saying " You took him off Seroquel so I'm not

> trying him with anything else " , but we took him off it because his reaction

> was so terrible (hateful thoughts/expression, extreme depression, inability

> to sleep, etc). So now, he is on NO meds at all for Parkinson's or LBD and

> I'm worried he's pining away more than ever. His appetite has decreased

> ever so slightly, his shakes are worse (previously controlled my meds such

> as Sinemet) and his mood has gone significantly downhill. He is more

> aggressive (verbally), particularly towards my mother and seems to want to

> engage less with me, his only daughter.

>

> The neuro mentioned above is the one who diagnosed Dad with LBD earlier

> this year but I'm wondering if the diagnosis is even correct. From what I

> can tell, the significant indicator of LBD is hallucinations. Am I right in

> saying this? Dad has only had one or two instances that could be described

> as hallucinations and they were very minor. No children or aliens climbing

> walls...nothing even close. He thought that the flowers on a greeting card

> sitting on the mantle were from the front garden. That's about as close as

> he has come to a hallucination. Could it be that Dad has Parkinson's

> Dementia? His body seems to be the thing giving up the most; difficulty

> walking, getting in and out of chairs/bed/car, etc. I know people with LBD

> have both good (coherent/cognizant) and bad days and Dad does have those.

> But as far as hallucinations go, if he has had any, they were very minor.

> Do they often start out minor and worsen with time or are they usually the

> same, dreadful ones from start to finish?

>

> I have so many questions right now but I don't want to confuse things.

>

> Should I seek another opinion from another neurologist? I wish there was

> someone nearby (perhaps Sydney area) who specialised in LBD but I don't

> know of anyone.

>

> I can handle (just) the thought of Dad passing away one day and I can

> handle myself or other family members being stressed. What I can't handle

> is hearing of my father crying and believing he is going to die soon.

>

> Sorry if this is jumbled. I've been coping but desperately wanting advice

> from those who know so much, ie. you in this group.

>

> Many thanks in advance.

>

> Tania.

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I agree with Helene, you do need to seek out another doctor, one who

will work with you and in your dad's best interest. No treatment at all

is negligence in my opinion.

My mom's hallucinations also started out small and infrequent, which she

would then dismiss with, " Oh I must have been daydreaming. " Then they

became more realistic and frequent, although never scary in the horror

movie sense of the word, they would infuriate her. They are now being

controlled with a delicate " cocktail " of meds that are working well

together, and that includes zoloft that Helene also mentioned, that has

helped incredibly with her suicidal thoughts and depression.

The main thing to remember when trying a new drug is to try only one at

a time, and start at the lowest possible dosage. If you achieve a good

effect, move on to the next one - again, lowest possible dosage.

My best to you and your family, this is definitely a tough row to hoe,

and one of the most cruel diseases I know of...

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

> Hi Tania,

> Perhaps the doctor should try zoloft instead of prozac in terms of an

anti-depressant. Prozac didn't do anything for my mom, but the zoloft did help

a lot. The prozac was also making her see double....

>

> Just because your dad had a bad reaction to seroquel doesn't mean that the

doctor shouldn't also try other drugs - Aricept or Excelon have been used with a

lot of 'success' with LBD patients.

>

> There are some members here that may be able to help you find the right

doctor.

>

>

>

> >

> >

> > Dad (dx with LBD early 2011) has still been having a bad time of it since we

saw his neuro in Sydney around 6 weeks ago. His mood is still down because he

was hoping for some positive news from his neuro, only to have the opposite.

Simon (the neuro) brought up MRI images of Dad's brain and said there was

significant shrinkage/atrophy - much more than expected in someone of Dad's age

and declared that Dad wouldn't get any better...all of this directly in front of

Dad who had his hearing aids in and was very coherent on the day.

> >

> > But last week was the worst. The docs have been playing around with his

heart/blood pressure meds to help with dizziness and in the midst of all the

'playing around' he had a really bad day, both physically and mentally. He told

Mum he was going to die soon and a while later, Mum found him sitting in the

back yard crying his eyes out. I've never seen my father cry. We have him on

Prozac to help with depression but it's almost as though it's not touching the

surface. Or perhaps it would be much worse without it. We're not sure.

> >

> > I asked the neuro if Dad could try Aricept because I'd read good things

about it, but as Dad had recently had a very bad reaction to Seroquel, he said

he didn't want to put him on anything else. I could be wrong but I felt that it

was his way of saying " You took him off Seroquel so I'm not trying him with

anything else " , but we took him off it because his reaction was so terrible

(hateful thoughts/expression, extreme depression, inability to sleep, etc). So

now, he is on NO meds at all for Parkinson's or LBD and I'm worried he's pining

away more than ever. His appetite has decreased ever so slightly, his shakes are

worse (previously controlled my meds such as Sinemet) and his mood has gone

significantly downhill. He is more aggressive (verbally), particularly towards

my mother and seems to want to engage less with me, his only daughter.

> >

> > The neuro mentioned above is the one who diagnosed Dad with LBD earlier this

year but I'm wondering if the diagnosis is even correct. From what I can tell,

the significant indicator of LBD is hallucinations. Am I right in saying this?

Dad has only had one or two instances that could be described as hallucinations

and they were very minor. No children or aliens climbing walls...nothing even

close. He thought that the flowers on a greeting card sitting on the mantle were

from the front garden. That's about as close as he has come to a hallucination.

Could it be that Dad has Parkinson's Dementia? His body seems to be the thing

giving up the most; difficulty walking, getting in and out of chairs/bed/car,

etc. I know people with LBD have both good (coherent/cognizant) and bad days and

Dad does have those. But as far as hallucinations go, if he has had any, they

were very minor. Do they often start out minor and worsen with time or are they

usually the same, dreadful ones from start to finish?

> >

> > I have so many questions right now but I don't want to confuse things.

> >

> > Should I seek another opinion from another neurologist? I wish there was

someone nearby (perhaps Sydney area) who specialised in LBD but I don't know of

anyone.

> >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Tania,

I think it's hard, especially for a daughter, to see her father, her hero,

crying and at a loss for hope. It would be far more devastating for me if

this were happening to my father, rather than my mother (though that is

devastating enough).

Absolutely get a second opinion and if that doesn't help, a third. Also,

see a neuropsychiatrist, if you can. We have both a neurologist and a

neuropsych (within the same clinic). LBD is not an old or well known

diagnosis and even the professionals have varying degrees of knowledge and

understanding. Another neuropsych might be better versed in the issue.

Try going through a University, if you haven't already. A doctor who is

training new docs, doing research, or has fairly recent training, is more

likely to be up to date on LBD.

That's one of the frustrations of LBD. You have to keep pushing until you

get a diagnosis and treatment that make sense. Oh, and a neuropsych, as

opposed to a neurologist, is more likely to pay attention to your dad's

depression.

One more thing. Does your dad see the doctor alone or do you, or another

family member, go in with him? I found that my mother seldom told her

doctor everything and tried to put on a show of good health for her. I now

sit behind my mother and, when she tries to answer her doctor (she has few

words now), I nod or shake my head to indicate if what she is saying is

true or not.

Good luck. Keep trying, keep pushing and try to distract your dad and

remind him (by doing if possible) of all the things he still can do.

Kathy

> **

>

>

>

> Dad (dx with LBD early 2011) has still been having a bad time of it since

> we saw his neuro in Sydney around 6 weeks ago. His mood is still down

> because he was hoping for some positive news from his neuro, only to have

> the opposite. Simon (the neuro) brought up MRI images of Dad's brain and

> said there was significant shrinkage/atrophy - much more than expected in

> someone of Dad's age and declared that Dad wouldn't get any better...all of

> this directly in front of Dad who had his hearing aids in and was very

> coherent on the day.

>

> But last week was the worst. The docs have been playing around with his

> heart/blood pressure meds to help with dizziness and in the midst of all

> the 'playing around' he had a really bad day, both physically and mentally.

> He told Mum he was going to die soon and a while later, Mum found him

> sitting in the back yard crying his eyes out. I've never seen my father

> cry. We have him on Prozac to help with depression but it's almost as

> though it's not touching the surface. Or perhaps it would be much worse

> without it. We're not sure.

>

> I asked the neuro if Dad could try Aricept because I'd read good things

> about it, but as Dad had recently had a very bad reaction to Seroquel, he

> said he didn't want to put him on anything else. I could be wrong but I

> felt that it was his way of saying " You took him off Seroquel so I'm not

> trying him with anything else " , but we took him off it because his reaction

> was so terrible (hateful thoughts/expression, extreme depression, inability

> to sleep, etc). So now, he is on NO meds at all for Parkinson's or LBD and

> I'm worried he's pining away more than ever. His appetite has decreased

> ever so slightly, his shakes are worse (previously controlled my meds such

> as Sinemet) and his mood has gone significantly downhill. He is more

> aggressive (verbally), particularly towards my mother and seems to want to

> engage less with me, his only daughter.

>

> The neuro mentioned above is the one who diagnosed Dad with LBD earlier

> this year but I'm wondering if the diagnosis is even correct. From what I

> can tell, the significant indicator of LBD is hallucinations. Am I right in

> saying this? Dad has only had one or two instances that could be described

> as hallucinations and they were very minor. No children or aliens climbing

> walls...nothing even close. He thought that the flowers on a greeting card

> sitting on the mantle were from the front garden. That's about as close as

> he has come to a hallucination. Could it be that Dad has Parkinson's

> Dementia? His body seems to be the thing giving up the most; difficulty

> walking, getting in and out of chairs/bed/car, etc. I know people with LBD

> have both good (coherent/cognizant) and bad days and Dad does have those.

> But as far as hallucinations go, if he has had any, they were very minor.

> Do they often start out minor and worsen with time or are they usually the

> same, dreadful ones from start to finish?

>

> I have so many questions right now but I don't want to confuse things.

>

> Should I seek another opinion from another neurologist? I wish there was

> someone nearby (perhaps Sydney area) who specialised in LBD but I don't

> know of anyone.

>

> I can handle (just) the thought of Dad passing away one day and I can

> handle myself or other family members being stressed. What I can't handle

> is hearing of my father crying and believing he is going to die soon.

>

> Sorry if this is jumbled. I've been coping but desperately wanting advice

> from those who know so much, ie. you in this group.

>

> Many thanks in advance.

>

> Tania.

>

>

>

--

Kate Knapp

Office of Information Technology

University of Minnesota

knapp@...

* " Nobody's right if everybody's wrong. " Now I know. It's from " For what

it's worth, " written by Stills and first recorded by Buffalo

Springfield*

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Wow Tania I am so sorry for the stress you are all experiencing. I agree

with others - it is time to get your father to a qualified second opinion.

Here in the states some of the best neurologists for dementias are found in

neurology clinics at major medical universities. That may be where you can

look. There has got to be an Alzheimer's association there - they were the

ones who helped me find the Memory and Aging clinic where I took my mother

in law (which made a HUGE difference for her quality of life).

There are other things that can be used for depression, some quiet mild.

Sinament might still be ok for your father to use if he had no sign of it

causing undesirably side effects. Some can continue it and some cannot and

it really needs to be evaluated by whether your father has bad side effects

and not just a diagnosis. Many people with LBD do not do well with

Seroquel - some do very well. That is an individual thing. Many don't do

well with Prozac either. Some do great with Trazadone or others. I

personally believe Exelon patches (more people have trouble with the pill

form and some who had trouble with the pill form do great with the patch)

are wonderful for those who can tolerate them and from what I have seen the

vast majority of patients do not only tolerate them but find some benefit to

them. There is literature that shows the sooner these are started the

better. Also they used to think that advanced cases it was no use but that

sentiment is also changing. I think that should be evaluated on an

individual basis as well. My mother in law although advanced stage, is

still benefiting from the Exelon patch. We know she is because every once

in awhile we are asked to take her off it for a couple weeks to see if it's

causing agitation (her yelling all night long) and when the only change is

she slips further away from remembering anything, we know it's working and

it's not the patch that's making her yell. So far when we have resumed the

patch her mind seems a little clearer and her memory a little better. Even

" a little " can translate to a heck of a lot in terms of quality of life.

Exercise should also be a big part of your father's regime and a doctor

should support and encourage this and help steer him to the proper resources

and physical therapists who can help establish a good routine for him to

follow. Exercise helps as well- or better - as any medicine can.

That this so called specialist told your father there was nothing he could

do is just terrible.

Yes, this is a fatal illness and no cure yet and no really sure fire

treatments yet. But there is much to do and try to manage things so that

life quality is optimum in the meantime. It won't be perfect - but if you

can get it the best as can be that is something. If your father is crying

I would venture to say he is grieving and it is completely appropriate to

help him come to terms with his diagnosis and decide what he wants to do

about it. Counseling should also be offered to your father and to family

who are in need. As many illnesses this is a process and there are things

that can be done to make the process more tolerable and the quality of life

better. That is the way I look at these various drugs - they are improving

the quality of life for my mil and if that's ALL they do by golly she should

have the right and opportunity to try. She's not dead yet! And neither is

your dear father.

Hang in there and try to find a doctor or memory center at a university

that's highly regarded by the Alzheimer's association there and get your

father in for a second opinion. I took my mother to three neurologists -

all with lousy advice - before we made it to the university Memory and Aging

clinic and finally got some help.

Sending you strength, prayers and hugs,

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of aussiebin

Sent: Wednesday, November 09, 2011 12:59 AM

To: LBDcaregivers

Subject: I'm confused and don't know what to do next, if

anything

Dad (dx with LBD early 2011) has still been having a bad time of it since we

saw his neuro in Sydney around 6 weeks ago. His mood is still down because

he was hoping for some positive news from his neuro, only to have the

opposite. Simon (the neuro) brought up MRI images of Dad's brain and said

there was significant shrinkage/atrophy - much more than expected in someone

of Dad's age and declared that Dad wouldn't get any better...all of this

directly in front of Dad who had his hearing aids in and was very coherent

on the day.

But last week was the worst. The docs have been playing around with his

heart/blood pressure meds to help with dizziness and in the midst of all the

'playing around' he had a really bad day, both physically and mentally. He

told Mum he was going to die soon and a while later, Mum found him sitting

in the back yard crying his eyes out. I've never seen my father cry. We have

him on Prozac to help with depression but it's almost as though it's not

touching the surface. Or perhaps it would be much worse without it. We're

not sure.

I asked the neuro if Dad could try Aricept because I'd read good things

about it, but as Dad had recently had a very bad reaction to Seroquel, he

said he didn't want to put him on anything else. I could be wrong but I felt

that it was his way of saying " You took him off Seroquel so I'm not trying

him with anything else " , but we took him off it because his reaction was so

terrible (hateful thoughts/expression, extreme depression, inability to

sleep, etc). So now, he is on NO meds at all for Parkinson's or LBD and I'm

worried he's pining away more than ever. His appetite has decreased ever so

slightly, his shakes are worse (previously controlled my meds such as

Sinemet) and his mood has gone significantly downhill. He is more aggressive

(verbally), particularly towards my mother and seems to want to engage less

with me, his only daughter.

The neuro mentioned above is the one who diagnosed Dad with LBD earlier this

year but I'm wondering if the diagnosis is even correct. From what I can

tell, the significant indicator of LBD is hallucinations. Am I right in

saying this? Dad has only had one or two instances that could be described

as hallucinations and they were very minor. No children or aliens climbing

walls...nothing even close. He thought that the flowers on a greeting card

sitting on the mantle were from the front garden. That's about as close as

he has come to a hallucination. Could it be that Dad has Parkinson's

Dementia? His body seems to be the thing giving up the most; difficulty

walking, getting in and out of chairs/bed/car, etc. I know people with LBD

have both good (coherent/cognizant) and bad days and Dad does have those.

But as far as hallucinations go, if he has had any, they were very minor. Do

they often start out minor and worsen with time or are they usually the

same, dreadful ones from st! art to finish?

I have so many questions right now but I don't want to confuse things.

Should I seek another opinion from another neurologist? I wish there was

someone nearby (perhaps Sydney area) who specialised in LBD but I don't know

of anyone.

I can handle (just) the thought of Dad passing away one day and I can handle

myself or other family members being stressed. What I can't handle is

hearing of my father crying and believing he is going to die soon.

Sorry if this is jumbled. I've been coping but desperately wanting advice

from those who know so much, ie. you in this group.

Many thanks in advance.

Tania.

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Tania, I also agree that you should find a different doctor, someone who will

work with you to make your dad the best he can be with his current condition.

My mom also started her journey with a Parkinsons diagnosis. That became

Parkinsons with dementia, which I was informed would be LBD. Dementia with

Parkinsons is apparently always LBD. Her " Parkinsons " never became full blown,

turning out it was parkinsonism related to PDD/LBD.

Hoping you can find the best med combo to help your dad.

>

>

>

> From: LBDcaregivers [mailto:LBDcaregivers ]

> On Behalf Of aussiebin

> Sent: Wednesday, November 09, 2011 12:59 AM

> To: LBDcaregivers

> Subject: I'm confused and don't know what to do next, if

> anything

>

>

>

>

>

>

> Dad (dx with LBD early 2011) has still been having a bad time of it since we

> saw his neuro in Sydney around 6 weeks ago. His mood is still down because

> he was hoping for some positive news from his neuro, only to have the

> opposite. Simon (the neuro) brought up MRI images of Dad's brain and said

> there was significant shrinkage/atrophy - much more than expected in someone

> of Dad's age and declared that Dad wouldn't get any better...all of this

> directly in front of Dad who had his hearing aids in and was very coherent

> on the day.

>

> But last week was the worst. The docs have been playing around with his

> heart/blood pressure meds to help with dizziness and in the midst of all the

> 'playing around' he had a really bad day, both physically and mentally. He

> told Mum he was going to die soon and a while later, Mum found him sitting

> in the back yard crying his eyes out. I've never seen my father cry. We have

> him on Prozac to help with depression but it's almost as though it's not

> touching the surface. Or perhaps it would be much worse without it. We're

> not sure.

>

> I asked the neuro if Dad could try Aricept because I'd read good things

> about it, but as Dad had recently had a very bad reaction to Seroquel, he

> said he didn't want to put him on anything else. I could be wrong but I felt

> that it was his way of saying " You took him off Seroquel so I'm not trying

> him with anything else " , but we took him off it because his reaction was so

> terrible (hateful thoughts/expression, extreme depression, inability to

> sleep, etc). So now, he is on NO meds at all for Parkinson's or LBD and I'm

> worried he's pining away more than ever. His appetite has decreased ever so

> slightly, his shakes are worse (previously controlled my meds such as

> Sinemet) and his mood has gone significantly downhill. He is more aggressive

> (verbally), particularly towards my mother and seems to want to engage less

> with me, his only daughter.

>

> The neuro mentioned above is the one who diagnosed Dad with LBD earlier this

> year but I'm wondering if the diagnosis is even correct. From what I can

> tell, the significant indicator of LBD is hallucinations. Am I right in

> saying this? Dad has only had one or two instances that could be described

> as hallucinations and they were very minor. No children or aliens climbing

> walls...nothing even close. He thought that the flowers on a greeting card

> sitting on the mantle were from the front garden. That's about as close as

> he has come to a hallucination. Could it be that Dad has Parkinson's

> Dementia? His body seems to be the thing giving up the most; difficulty

> walking, getting in and out of chairs/bed/car, etc. I know people with LBD

> have both good (coherent/cognizant) and bad days and Dad does have those.

> But as far as hallucinations go, if he has had any, they were very minor. Do

> they often start out minor and worsen with time or are they usually the

> same, dreadful ones from st! art to finish?

>

> I have so many questions right now but I don't want to confuse things.

>

> Should I seek another opinion from another neurologist? I wish there was

> someone nearby (perhaps Sydney area) who specialised in LBD but I don't know

> of anyone.

>

> I can handle (just) the thought of Dad passing away one day and I can handle

> myself or other family members being stressed. What I can't handle is

> hearing of my father crying and believing he is going to die soon.

>

> Sorry if this is jumbled. I've been coping but desperately wanting advice

> from those who know so much, ie. you in this group.

>

> Many thanks in advance.

>

> Tania.

>

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Tania,

I want to add one thing. Mom's neuropsychiatrist had her in the room for

delivery of the diagnosis, too. But the second time I took her to an

appointment and she wanted to know why, she said to me " Oh, I forgot that I

have dementia! " [?]

There are moments that are just precious.

Kathy

> Tania,

>

> I think it's hard, especially for a daughter, to see her father, her hero,

> crying and at a loss for hope. It would be far more devastating for me if

> this were happening to my father, rather than my mother (though that is

> devastating enough).

>

> Absolutely get a second opinion and if that doesn't help, a third. Also,

> see a neuropsychiatrist, if you can. We have both a neurologist and a

> neuropsych (within the same clinic). LBD is not an old or well known

> diagnosis and even the professionals have varying degrees of knowledge and

> understanding. Another neuropsych might be better versed in the issue.

> Try going through a University, if you haven't already. A doctor who is

> training new docs, doing research, or has fairly recent training, is more

> likely to be up to date on LBD.

>

> That's one of the frustrations of LBD. You have to keep pushing until you

> get a diagnosis and treatment that make sense. Oh, and a neuropsych, as

> opposed to a neurologist, is more likely to pay attention to your dad's

> depression.

>

> One more thing. Does your dad see the doctor alone or do you, or another

> family member, go in with him? I found that my mother seldom told her

> doctor everything and tried to put on a show of good health for her. I now

> sit behind my mother and, when she tries to answer her doctor (she has few

> words now), I nod or shake my head to indicate if what she is saying is

> true or not.

>

> Good luck. Keep trying, keep pushing and try to distract your dad and

> remind him (by doing if possible) of all the things he still can do.

>

> Kathy

>

>

>

>> **

>>

>>

>>

>> Dad (dx with LBD early 2011) has still been having a bad time of it since

>> we saw his neuro in Sydney around 6 weeks ago. His mood is still down

>> because he was hoping for some positive news from his neuro, only to have

>> the opposite. Simon (the neuro) brought up MRI images of Dad's brain and

>> said there was significant shrinkage/atrophy - much more than expected in

>> someone of Dad's age and declared that Dad wouldn't get any better...all of

>> this directly in front of Dad who had his hearing aids in and was very

>> coherent on the day.

>>

>> But last week was the worst. The docs have been playing around with his

>> heart/blood pressure meds to help with dizziness and in the midst of all

>> the 'playing around' he had a really bad day, both physically and mentally.

>> He told Mum he was going to die soon and a while later, Mum found him

>> sitting in the back yard crying his eyes out. I've never seen my father

>> cry. We have him on Prozac to help with depression but it's almost as

>> though it's not touching the surface. Or perhaps it would be much worse

>> without it. We're not sure.

>>

>> I asked the neuro if Dad could try Aricept because I'd read good things

>> about it, but as Dad had recently had a very bad reaction to Seroquel, he

>> said he didn't want to put him on anything else. I could be wrong but I

>> felt that it was his way of saying " You took him off Seroquel so I'm not

>> trying him with anything else " , but we took him off it because his reaction

>> was so terrible (hateful thoughts/expression, extreme depression, inability

>> to sleep, etc). So now, he is on NO meds at all for Parkinson's or LBD and

>> I'm worried he's pining away more than ever. His appetite has decreased

>> ever so slightly, his shakes are worse (previously controlled my meds such

>> as Sinemet) and his mood has gone significantly downhill. He is more

>> aggressive (verbally), particularly towards my mother and seems to want to

>> engage less with me, his only daughter.

>>

>> The neuro mentioned above is the one who diagnosed Dad with LBD earlier

>> this year but I'm wondering if the diagnosis is even correct. From what I

>> can tell, the significant indicator of LBD is hallucinations. Am I right in

>> saying this? Dad has only had one or two instances that could be described

>> as hallucinations and they were very minor. No children or aliens climbing

>> walls...nothing even close. He thought that the flowers on a greeting card

>> sitting on the mantle were from the front garden. That's about as close as

>> he has come to a hallucination. Could it be that Dad has Parkinson's

>> Dementia? His body seems to be the thing giving up the most; difficulty

>> walking, getting in and out of chairs/bed/car, etc. I know people with LBD

>> have both good (coherent/cognizant) and bad days and Dad does have those.

>> But as far as hallucinations go, if he has had any, they were very minor.

>> Do they often start out minor and worsen with time or are they usually the

>> same, dreadful ones from start to finish?

>>

>> I have so many questions right now but I don't want to confuse things.

>>

>> Should I seek another opinion from another neurologist? I wish there was

>> someone nearby (perhaps Sydney area) who specialised in LBD but I don't

>> know of anyone.

>>

>> I can handle (just) the thought of Dad passing away one day and I can

>> handle myself or other family members being stressed. What I can't handle

>> is hearing of my father crying and believing he is going to die soon.

>>

>> Sorry if this is jumbled. I've been coping but desperately wanting advice

>> from those who know so much, ie. you in this group.

>>

>> Many thanks in advance.

>>

>> Tania.

>>

>>

>>

>

>

>

> --

> Kate Knapp

> Office of Information Technology

> University of Minnesota

> knapp@...

>

>

> * " Nobody's right if everybody's wrong. " Now I know. It's from " For what

> it's worth, " written by Stills and first recorded by Buffalo

> Springfield*

>

--

Kate Knapp

Office of Information Technology

University of Minnesota

knapp@...

* " Nobody's right if everybody's wrong. " Now I know. It's from " For what

it's worth, " written by Stills and first recorded by Buffalo

Springfield*

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Kate,

My GOD! It seems as if you are speaking about my Mother.

She was diagnosed on my birthday, 3/4/10 and now is being placed in a nursing

home, only 11/10/11!

She progressed so quickly because, she was 67 when diagnosed and the neurologist

said that you advance rapidly

with the illness when you get it young.

As you, I am crushed, as my Mom was my life - I am single, never married and

live in my parents home, that I now own.

My Dad's life is inevitably altered forever and they are married nearly 50

years.

My Mom lied all the time to the doctors stating that " I'm fine, I really am,

you're crazy, I'm fine... "

I started to feel crazy, although I knew I wasn't. I started to doubt myself

constantly.

I wanted to believe her, I was the only one that knew in my heart of hearts that

my Mother wasn't coming back to us-ever.

Her doctor was ignorant to this disease and didn't pick it up.

It started 10 yrs. ago as depression and light forgetfulness and accomodating

behavior that she hid very well.

It was all fast moving after her hospitalization in 2010, like as if the

hospitalization " allowed " her to show us all the behaviors

hiding right underneath the skin. She had gotten some relief temporarily from

Namenda and Seroquel and Xelon, although now,

as quoted from the emergency room visit en route to a Nursing Home placement, in

which I went to emergency to see if her incontinence

was from meds or to get them re-evaluated, I was told " there is nothing else I

can do for your Mother--she is far gone. "

Now I have the PRI from the Social Worker, as Catholic Charities never came to

my rescue, nor did anyone else for that matter, and set up a

house appointment to activate some respite for Dad and me for at least medicare

of the 4 hours per day. We struggled cleaning up feces in the

bathtub, urine on the floor, found her eating dog bisquits and cleaning dishes

with pinesol. It was all too late, and we had to do something fast.

Now my mother, Rose, is gone, and I wear her wedding ring on my right hand,

remembering her stories and know that I will visit her

at the home, and have to reach yet another " low " of seeing her in that

environment and watch my Dad's face slowly have the light fading

from his eyes as his Rosie isn't coming home. The kicker is that her Mom, my

paternal grandmother is alive and living with me at 91!

My Mom is not....That's life...At 43, I think I have seen it all. I am tired. I

need a break.

I pray for my Mother that she didn't get this and we as a family didn't have to

suffer watching this, but, we had no choice or say.

God bless my Mom and all your Mothers, Fathers, Brothers, Sisters, Aunts,

Uncles, Friends, etc. It is just not fair, but, we must walk through the " firey

flames of hell " to get on the other side.

-

M. Alfieri, CCUCG, CMF, CWDP, HCS, GCDF, PCC, PCM

Executive & Corporate Coach

www.EmpoweringInquiry.com

Follow Me on Twitter at: HRCoach

LinkedIn: Alfieri1968

Facebook: .Alfieri

Specializes in: 360 Assessments, Organizational Development, Change &

Performance Management, Human Resources Law, Employee Relations and

Facilitation. Approved Facilitator with DDI and Certified in Lominger Voices 360

& Career Architect, MBTI, FIRO-B, PRINT, MAPP, DISC, and Reach360.

Re: I'm confused and don't know what to do next, if

anything

Tania,

I think it's hard, especially for a daughter, to see her father, her hero,

crying and at a loss for hope. It would be far more devastating for me if

this were happening to my father, rather than my mother (though that is

devastating enough).

Absolutely get a second opinion and if that doesn't help, a third. Also,

see a neuropsychiatrist, if you can. We have both a neurologist and a

neuropsych (within the same clinic). LBD is not an old or well known

diagnosis and even the professionals have varying degrees of knowledge and

understanding. Another neuropsych might be better versed in the issue.

Try going through a University, if you haven't already. A doctor who is

training new docs, doing research, or has fairly recent training, is more

likely to be up to date on LBD.

That's one of the frustrations of LBD. You have to keep pushing until you

get a diagnosis and treatment that make sense. Oh, and a neuropsych, as

opposed to a neurologist, is more likely to pay attention to your dad's

depression.

One more thing. Does your dad see the doctor alone or do you, or another

family member, go in with him? I found that my mother seldom told her

doctor everything and tried to put on a show of good health for her. I now

sit behind my mother and, when she tries to answer her doctor (she has few

words now), I nod or shake my head to indicate if what she is saying is

true or not.

Good luck. Keep trying, keep pushing and try to distract your dad and

remind him (by doing if possible) of all the things he still can do.

Kathy

> **

>

>

>

> Dad (dx with LBD early 2011) has still been having a bad time of it since

> we saw his neuro in Sydney around 6 weeks ago. His mood is still down

> because he was hoping for some positive news from his neuro, only to have

> the opposite. Simon (the neuro) brought up MRI images of Dad's brain and

> said there was significant shrinkage/atrophy - much more than expected in

> someone of Dad's age and declared that Dad wouldn't get any better...all of

> this directly in front of Dad who had his hearing aids in and was very

> coherent on the day.

>

> But last week was the worst. The docs have been playing around with his

> heart/blood pressure meds to help with dizziness and in the midst of all

> the 'playing around' he had a really bad day, both physically and mentally.

> He told Mum he was going to die soon and a while later, Mum found him

> sitting in the back yard crying his eyes out. I've never seen my father

> cry. We have him on Prozac to help with depression but it's almost as

> though it's not touching the surface. Or perhaps it would be much worse

> without it. We're not sure.

>

> I asked the neuro if Dad could try Aricept because I'd read good things

> about it, but as Dad had recently had a very bad reaction to Seroquel, he

> said he didn't want to put him on anything else. I could be wrong but I

> felt that it was his way of saying " You took him off Seroquel so I'm not

> trying him with anything else " , but we took him off it because his reaction

> was so terrible (hateful thoughts/expression, extreme depression, inability

> to sleep, etc). So now, he is on NO meds at all for Parkinson's or LBD and

> I'm worried he's pining away more than ever. His appetite has decreased

> ever so slightly, his shakes are worse (previously controlled my meds such

> as Sinemet) and his mood has gone significantly downhill. He is more

> aggressive (verbally), particularly towards my mother and seems to want to

> engage less with me, his only daughter.

>

> The neuro mentioned above is the one who diagnosed Dad with LBD earlier

> this year but I'm wondering if the diagnosis is even correct. From what I

> can tell, the significant indicator of LBD is hallucinations. Am I right in

> saying this? Dad has only had one or two instances that could be described

> as hallucinations and they were very minor. No children or aliens climbing

> walls...nothing even close. He thought that the flowers on a greeting card

> sitting on the mantle were from the front garden. That's about as close as

> he has come to a hallucination. Could it be that Dad has Parkinson's

> Dementia? His body seems to be the thing giving up the most; difficulty

> walking, getting in and out of chairs/bed/car, etc. I know people with LBD

> have both good (coherent/cognizant) and bad days and Dad does have those.

> But as far as hallucinations go, if he has had any, they were very minor.

> Do they often start out minor and worsen with time or are they usually the

> same, dreadful ones from start to finish?

>

> I have so many questions right now but I don't want to confuse things.

>

> Should I seek another opinion from another neurologist? I wish there was

> someone nearby (perhaps Sydney area) who specialised in LBD but I don't

> know of anyone.

>

> I can handle (just) the thought of Dad passing away one day and I can

> handle myself or other family members being stressed. What I can't handle

> is hearing of my father crying and believing he is going to die soon.

>

> Sorry if this is jumbled. I've been coping but desperately wanting advice

> from those who know so much, ie. you in this group.

>

> Many thanks in advance.

>

> Tania.

>

>

>

--

Kate Knapp

Office of Information Technology

University of Minnesota

knapp@...

* " Nobody's right if everybody's wrong. " Now I know. It's from " For what

it's worth, " written by Stills and first recorded by Buffalo

Springfield*

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi Kathy.

Thanks so much for all of that advice which I'll certainly be taking on-board.

It is very hard for me to see Dad like this. It haunts me every day but I'll do

my very best to help. I moved out of Sydney and back to my home town to do that

and I'll always be glad I did. I still think of Dad as being that strong,

energetic, protective man he was when I was a kid so seeing him so frail now is

difficult but I'm determined to make sure he has the best possible life right to

the end.

Mum and I always accompany Dad to appointments - both because he has difficulty

in remembering a lot of things and also due to the fact that he always tends to

underplay things so we tell the doctors, etc, the real situation. Sometimes they

get frustrated with me (most recently Dad's physio) because I butt in so much

with information but I want them to have the facts so I don't really care if

they like it or not. Dad doesn't even remember severely dislocating his shoulder

a couple of years ago and when doing physio, it's important for them to know

things like that so he doesn't aggravate the injury.

It looks like I have more research to do in order to find a good neuropsych.

Being in a regional area (two hours south of Sydney) there are no specialists

here but that's alright because I'll do what we always do and drive Dad back up

to Sydney where just about everything is available.

I will certainly let you know how we go and thanks again for taking the time out

to help, it's very much appreciated.

Tania x

>

> > **

> >

> >

> >

> > Dad (dx with LBD early 2011) has still been having a bad time of it since

> > we saw his neuro in Sydney around 6 weeks ago. His mood is still down

> > because he was hoping for some positive news from his neuro, only to have

> > the opposite. Simon (the neuro) brought up MRI images of Dad's brain and

> > said there was significant shrinkage/atrophy - much more than expected in

> > someone of Dad's age and declared that Dad wouldn't get any better...all of

> > this directly in front of Dad who had his hearing aids in and was very

> > coherent on the day.

> >

> > But last week was the worst. The docs have been playing around with his

> > heart/blood pressure meds to help with dizziness and in the midst of all

> > the 'playing around' he had a really bad day, both physically and mentally.

> > He told Mum he was going to die soon and a while later, Mum found him

> > sitting in the back yard crying his eyes out. I've never seen my father

> > cry. We have him on Prozac to help with depression but it's almost as

> > though it's not touching the surface. Or perhaps it would be much worse

> > without it. We're not sure.

> >

> > I asked the neuro if Dad could try Aricept because I'd read good things

> > about it, but as Dad had recently had a very bad reaction to Seroquel, he

> > said he didn't want to put him on anything else. I could be wrong but I

> > felt that it was his way of saying " You took him off Seroquel so I'm not

> > trying him with anything else " , but we took him off it because his reaction

> > was so terrible (hateful thoughts/expression, extreme depression, inability

> > to sleep, etc). So now, he is on NO meds at all for Parkinson's or LBD and

> > I'm worried he's pining away more than ever. His appetite has decreased

> > ever so slightly, his shakes are worse (previously controlled my meds such

> > as Sinemet) and his mood has gone significantly downhill. He is more

> > aggressive (verbally), particularly towards my mother and seems to want to

> > engage less with me, his only daughter.

> >

> > The neuro mentioned above is the one who diagnosed Dad with LBD earlier

> > this year but I'm wondering if the diagnosis is even correct. From what I

> > can tell, the significant indicator of LBD is hallucinations. Am I right in

> > saying this? Dad has only had one or two instances that could be described

> > as hallucinations and they were very minor. No children or aliens climbing

> > walls...nothing even close. He thought that the flowers on a greeting card

> > sitting on the mantle were from the front garden. That's about as close as

> > he has come to a hallucination. Could it be that Dad has Parkinson's

> > Dementia? His body seems to be the thing giving up the most; difficulty

> > walking, getting in and out of chairs/bed/car, etc. I know people with LBD

> > have both good (coherent/cognizant) and bad days and Dad does have those.

> > But as far as hallucinations go, if he has had any, they were very minor.

> > Do they often start out minor and worsen with time or are they usually the

> > same, dreadful ones from start to finish?

> >

> > I have so many questions right now but I don't want to confuse things.

> >

> > Should I seek another opinion from another neurologist? I wish there was

> > someone nearby (perhaps Sydney area) who specialised in LBD but I don't

> > know of anyone.

> >

> > I can handle (just) the thought of Dad passing away one day and I can

> > handle myself or other family members being stressed. What I can't handle

> > is hearing of my father crying and believing he is going to die soon.

> >

> > Sorry if this is jumbled. I've been coping but desperately wanting advice

> > from those who know so much, ie. you in this group.

> >

> > Many thanks in advance.

> >

> > Tania.

> >

> >

> >

>

>

>

> --

> Kate Knapp

> Office of Information Technology

> University of Minnesota

> knapp@...

>

>

> * " Nobody's right if everybody's wrong. " Now I know. It's from " For what

> it's worth, " written by Stills and first recorded by Buffalo

> Springfield*

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Thank you so much Helene and to everyone who has responded with such useful

advice.

As I've read each message, I've taken notes as to what we can try next. Zoloft,

Exelon patches, a neuropsychiatrist, a memory and aging clinic, exercise, a

medical university, etc. I'm going to give everything a shot until we get Dad to

a point where I'm happy we're doing everything that can be done.

I'm so, so glad I posted my message yesterday because I feel now that we're not

at the end of the road where options are concerned. You are all my wellbeing

lifeline! It's so refreshing to discuss this issue with people who have

first-hand experience. I can't tell you how many times I've seen blank faces

when speaking with medical professionals, physios, etc, when asking them if

they've heard of LBD. I'm making it my part-time mission to raise awareness of

this disease here in Australia. I previously worked in the media as a publicist

so I know that I have the means to make a difference and am hopeful that I can

do so soon.

On a slightly different note, I've convinced (it wasn't too difficult) my mother

to go back to her old hobby and favourite pastime of going to bingo once a week.

She hasn't been for at least 18 months because she was worried about leaving Dad

but now that I live locally, I've told her I will go and watch a movie with Dad

and look over him because she's been 'on the edge' with Dad for a while now.

It's time to get some balance back in her life too.

Thanks again for helping not only myself but also my Dad, whom I love dearly.

Sending big hugs,

Tania.

> >

> >

> > Dad (dx with LBD early 2011) has still been having a bad time of it since we

saw his neuro in Sydney around 6 weeks ago. His mood is still down because he

was hoping for some positive news from his neuro, only to have the opposite.

Simon (the neuro) brought up MRI images of Dad's brain and said there was

significant shrinkage/atrophy - much more than expected in someone of Dad's age

and declared that Dad wouldn't get any better...all of this directly in front of

Dad who had his hearing aids in and was very coherent on the day.

> >

> > But last week was the worst. The docs have been playing around with his

heart/blood pressure meds to help with dizziness and in the midst of all the

'playing around' he had a really bad day, both physically and mentally. He told

Mum he was going to die soon and a while later, Mum found him sitting in the

back yard crying his eyes out. I've never seen my father cry. We have him on

Prozac to help with depression but it's almost as though it's not touching the

surface. Or perhaps it would be much worse without it. We're not sure.

> >

> > I asked the neuro if Dad could try Aricept because I'd read good things

about it, but as Dad had recently had a very bad reaction to Seroquel, he said

he didn't want to put him on anything else. I could be wrong but I felt that it

was his way of saying " You took him off Seroquel so I'm not trying him with

anything else " , but we took him off it because his reaction was so terrible

(hateful thoughts/expression, extreme depression, inability to sleep, etc). So

now, he is on NO meds at all for Parkinson's or LBD and I'm worried he's pining

away more than ever. His appetite has decreased ever so slightly, his shakes are

worse (previously controlled my meds such as Sinemet) and his mood has gone

significantly downhill. He is more aggressive (verbally), particularly towards

my mother and seems to want to engage less with me, his only daughter.

> >

> > The neuro mentioned above is the one who diagnosed Dad with LBD earlier this

year but I'm wondering if the diagnosis is even correct. From what I can tell,

the significant indicator of LBD is hallucinations. Am I right in saying this?

Dad has only had one or two instances that could be described as hallucinations

and they were very minor. No children or aliens climbing walls...nothing even

close. He thought that the flowers on a greeting card sitting on the mantle were

from the front garden. That's about as close as he has come to a hallucination.

Could it be that Dad has Parkinson's Dementia? His body seems to be the thing

giving up the most; difficulty walking, getting in and out of chairs/bed/car,

etc. I know people with LBD have both good (coherent/cognizant) and bad days and

Dad does have those. But as far as hallucinations go, if he has had any, they

were very minor. Do they often start out minor and worsen with time or are they

usually the same, dreadful ones from start to finish?

> >

> > I have so many questions right now but I don't want to confuse things.

> >

> > Should I seek another opinion from another neurologist? I wish there was

someone nearby (perhaps Sydney area) who specialised in LBD but I don't know of

anyone.

> >

> > I can handle (just) the thought of Dad passing away one day and I can handle

myself or other family members being stressed. What I can't handle is hearing of

my father crying and believing he is going to die soon.

> >

> > Sorry if this is jumbled. I've been coping but desperately wanting advice

from those who know so much, ie. you in this group.

> >

> > Many thanks in advance.

> >

> > Tania.

> >

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi Tania

I agree with others...try zoloft. My mom takes it and it seems to help with

depression. She too was doing alot of crying and having suicidal thoughts in the

beginning. My mom has been on Aricept since she was diagnosed. She was

hallucinating in the beginning but the Aricept ended that.

My mom has been in a care home for a year now. We did have to add a small dose

of seroquel to manage her behavior. It is working.

Hard to believe your Dr is not treating with any meds especially since it sounds

like your Dad has Parkinsons symptoms. I agree with the others ...get another

opinion.

Good luck.

& mom Ginny 88 years

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

This is the fact sheet I found online from your Alzheimer's Association of

Australia, please Contact the National Dementia Helpline on 1800 100 500 to

help you find a good neuropsychiatrist that is familia with LBD

Best Wishe,

Pat M.

*Alzheimer's Australia Living with dementia

<http://www.fightdementia.org.au/default.aspx>

*

- Home <http://www.fightdementia.org.au/default.aspx>

- >Understanding Dementia and Memory

Loss<http://www.fightdementia.org.au/understanding-dementia-and-memory-loss.aspx\

>

- >About

dementia<http://www.fightdementia.org.au/understanding-dementia/about-dementia.a\

spx>

- >Types of

dementia<http://www.fightdementia.org.au/understanding-dementia/types-of-dementi\

a.aspx>

- > Dementia with Lewy Bodies

Dementia with Lewy Bodies

Dementia with Lewy bodies is a common form of dementia, sharing many

similarities with Alzheimer’s disease. Lewy bodies, its causes, diagnosis

and progression is described here.

What is dementia with Lewy bodies?

Dementia with Lewy bodies is caused by the degeneration and death of nerve

cells in the brain. The name comes from the presence of abnormal spherical

structures, called Lewy bodies, which develop inside nerve cells. It is

thought that these may contribute to the death of the brain cells. They are

named after the doctor who first wrote about them. It is sometimes referred

to as Diffuse Lewy body disease.

What is the cause?

At present there is no known cause of dementia with Lewy bodies, and no

known risk factors have been identified. There is no evidence that dementia

with Lewy bodies is an inherited disease.

How is dementia with Lewy bodies diagnosed?

This type of dementia is diagnosed by taking a careful history of the

pattern of symptoms, and by excluding other possible causes such as

Vascular dementia and Alzheimer's disease. A brain scan may reveal brain

degeneration, but the Lewy bodies can only be identified by examination of

brain tissue after death.

Dementia with Lewy bodies is similar to Alzheimer's disease in many ways,

and in the past it has sometimes been difficult to distinguish the two. It

has only recently been accepted as a disease in its own right. Dementia

with Lewy bodies can occur by itself or together with Alzheimer's disease

and/or Vascular dementia. It may be hard to distinguish Dementia with Lewy

bodies from Parkinson's disease, and some people with Parkinson's disease

develop a dementia which is similar to that seen in Dementia with Lewy

Bodies.

What are the symptoms?

The symptoms of dementia with Lewy bodies include:

- Difficulty with concentration and attention

- Extreme confusion

- Difficulties judging distances, often resulting in falls.

There are also three cardinal symptoms, two of which must be present in

order to make the diagnosis:

- Visual hallucinations

- Parkinsonism (tremors and stiffness similar to that seen in

Parkinson's disease)

- Fluctuation in mental state so that the person may be lucid and clear

at one time and confused, disoriented and bewildered at other times.

Typically this fluctuation occurs over a period of hours or even minutes

and is not due to any underlying acute physical illness.

Some people who have dementia with Lewy bodies may also experience

delusions and/or depression.

Who gets dementia with Lewy bodies?

Both men and women can develop this disease, although it is more common in

men.

How does dementia with Lewy bodies progress?

Dementia with Lewy bodies differs from Alzheimer's disease in that the

progression of the disease is usually more rapid. However, like Alzheimer's

disease it is a degenerative condition, eventually leading to complete

dependence. Death is usually a result of another illness, such as pneumonia

or an infection. The average lifespan after the onset of symptoms is about

seven years.

Is there treatment available?

At present there is no cure for dementia with Lewy bodies. Symptoms such as

depression and disturbing hallucinations can usually be reduced by

medication. However, medications to relieve hallucinations may increase

muscle tremors and stiffness. Conversely, anti-Parkinson drugs may make

hallucinations worse. Emerging evidence suggests that cholinesterase

inhibitor drugs may be quite helpful for some people with this

condition.People with this form of dementia are very sensitive to the side

effects of neuroleptic drugs such as antipsychotic medications. It is

essential all medications are supervised by a specialist to avoid these

severe side effects.

Further Help

Alzheimer's Australia offers support, information, education and

counselling. Contact the National Dementia Helpline on 1800 100 500. For a

range of books and videos contact our

Library<http://www.fightdementia.org.au/services/library.aspx>.

Also see our section on Help Sheets and Update

Sheets<http://www.fightdementia.org.au/understanding-dementia/help-sheets-and-up\

date-sheets.aspx>.

[image: Bookmark and

Share]<https://www.addthis.com/bookmark.php?v=250 & username=alzheimers>

Back

to

Top<http://www.fightdementia.org.au/understanding-dementia/dementia-with-lewy-bo\

dies.aspx#content>

Help Sheet

What is dementia with Lewy Bodies?*(PDF, 212

kB)*<http://www.fightdementia.org.au/common/files/NAT/20100805-AANO-1-15-Demenit\

aWithLewyBodies-Helpsheet-final.pdf>

Alzheimer's Australia offers support, information, education and

counselling. Contact the National Dementia Helpline on 1800 100 500.

Understanding Dementia and Memory

Loss<http://www.fightdementia.org.au/understanding-dementia-and-memory-loss.aspx\

>

- About

dementia<http://www.fightdementia.org.au/understanding-dementia/about-dementia.a\

spx>

- What is

dementia<http://www.fightdementia.org.au/understanding-dementia/what-is-dementia\

..aspx>

- Types of

dementia<http://www.fightdementia.org.au/understanding-dementia/types-of-dementi\

a.aspx>

- AIDS related

dementia<http://www.fightdementia.org.au/understanding-dementia/aids-related-dem\

entia.aspx>

- Alcohol related

dementia<http://www.fightdementia.org.au/understanding-dementia/alcohol-related-\

dementia.aspx>

- Alzheimer's

disease<http://www.fightdementia.org.au/understanding-dementia/alzheimers-diseas\

e.aspx>

- Dementia with Lewy

Bodies<http://www.fightdementia.org.au/understanding-dementia/dementia-with-lewy\

-bodies.aspx>

- Down syndrome & Alzheimer's

disease<http://www.fightdementia.org.au/understanding-dementia/down-syndrome--al\

zheimers-disease.aspx>

- Fronto Temporal Lobar

Degeneration<http://www.fightdementia.org.au/understanding-dementia/fronto-tempo\

ral-lobar-degeneration.aspx>

- Vascular

dementia<http://www.fightdementia.org.au/understanding-dementia/vascular-dementi\

a.aspx>

- Memory

loss<http://www.fightdementia.org.au/understanding-dementia/memory-loss.aspx>

-

Behaviour<http://www.fightdementia.org.au/understanding-dementia/behaviour.aspx>

- Am I at

risk?<http://www.fightdementia.org.au/understanding-dementia/am-i-at-risk.aspx>

- How can I find out

more<http://www.fightdementia.org.au/understanding-dementia/how-can-i-find-out-m\

ore.aspx>

- How is dementia

treated<http://www.fightdementia.org.au/understanding-dementia/how-is-dementia-t\

reated.aspx>

- Help Sheets and Update

Sheets<http://www.fightdementia.org.au/understanding-dementia/help-sheets-and-up\

date-sheets.aspx>

- Cultural

diversity<http://www.fightdementia.org.au/understanding-dementia/cultural-divers\

ity.aspx>

- Aboriginal & Strait Islander

groups<http://www.fightdementia.org.au/understanding-dementia/aboriginal--torres\

-strait-islander-groups.aspx>

- Information in other

languages<http://www.fightdementia.org.au/understanding-dementia/information-in-\

other-languages.aspx>

- Consumer

resources<http://www.fightdementia.org.au/understanding-dementia/consumer-resour\

ces.aspx>

-

Statistics<http://www.fightdementia.org.au/understanding-dementia/statistics.asp\

x>

- FAQ <http://www.fightdementia.org.au/understanding-dementia/faq.aspx>

Choose your stateACTNew South WalesNorthern TerritoryQueenslandSouth

AustraliaTasmaniaWestern AustraliaChoose your state

- Home <http://www.fightdementia.org.au/default.aspx>

- Contact <http://www.fightdementia.org.au/contact-us.aspx>

- Media <http://www.fightdementia.org.au/media.aspx>

- Login <http://www.fightdementia.org.au/login.aspx>

- Register <http://www.fightdementia.org.au/register.aspx>

print

page<http://www.fightdementia.org.au/understanding-dementia/dementia-with-lewy-b\

odies.aspx#>

Text size

-

A+<http://www.fightdementia.org.au/understanding-dementia/dementia-with-lewy-bod\

ies.aspx#>

-

A-<http://www.fightdementia.org.au/understanding-dementia/dementia-with-lewy-bod\

ies.aspx#>

National Dementia Helpline 1800 100 500

- Understanding Dementia and Memory

Loss<http://www.fightdementia.org.au/understanding-dementia-and-memory-loss.aspx\

>

- About

dementia<http://www.fightdementia.org.au/understanding-dementia/about-dementia.a\

spx>

- Am I at

risk?<http://www.fightdementia.org.au/understanding-dementia/am-i-at-risk.aspx>

- How can I find out

more<http://www.fightdementia.org.au/understanding-dementia/how-can-i-find-out-m\

ore.aspx>

- How is dementia

treated<http://www.fightdementia.org.au/understanding-dementia/how-is-dementia-t\

reated.aspx>

- Help Sheets and Update

Sheets<http://www.fightdementia.org.au/understanding-dementia/help-sheets-and-up\

date-sheets.aspx>

- Cultural

diversity<http://www.fightdementia.org.au/understanding-dementia/cultural-divers\

ity.aspx>

- Aboriginal & Strait Islander

groups<http://www.fightdementia.org.au/understanding-dementia/aboriginal--torres\

-strait-islander-groups.aspx>

- Information in other

languages<http://www.fightdementia.org.au/understanding-dementia/information-in-\

other-languages.aspx>

- Consumer

resources<http://www.fightdementia.org.au/understanding-dementia/consumer-resour\

ces.aspx>

-

Statistics<http://www.fightdementia.org.au/understanding-dementia/statistics.asp\

x>

- FAQ<http://www.fightdementia.org.au/understanding-dementia/faq.aspx>

[image: About dementia]

*About dementia*

Feeling forgetful or confused? Finding out what is wrong is the first

step to getting

help<http://www.fightdementia.org.au/understanding-dementia/about-dementia.aspx>

[image: Am I at risk?]

*Am I at risk?*

Information about the early signs and symptoms of

dementia<http://www.fightdementia.org.au/understanding-dementia/am-i-at-risk.asp\

x>

- Services and

Support<http://www.fightdementia.org.au/services-and-support.aspx>

- I have

dementia<http://www.fightdementia.org.au/services/i-have-dementia.aspx>

- I care for someone with

dementia<http://www.fightdementia.org.au/services/i-care-for-someone-with-dement\

ia.aspx>

- Support for families and

carers<http://www.fightdementia.org.au/services/support-for-families-and-carers.\

aspx>

- Services and support we

provide<http://www.fightdementia.org.au/services/services--support-we-provide.as\

px>

- Library <http://www.fightdementia.org.au/services/library.aspx>

- Bookshop <http://www.fightdementia.org.au/services/bookshop.aspx>

[image: I have dementia]

*I have dementia*

Information, services and support that you can access through

Alzheimer’s

Australia.<http://www.fightdementia.org.au/services/i-have-dementia.aspx>

[image: I care for someone with dementia]

*I care for someone with dementia*

Information and support for family members and carers of people living

with

dementia.<http://www.fightdementia.org.au/services/i-care-for-someone-with-demen\

tia.aspx>

- Get Involved <http://www.fightdementia.org.au/get-involved.aspx>

- Donate <http://www.fightdementia.org.au/get-involved/donate.aspx>

- Fundraise<http://www.fightdementia.org.au/get-involved/campaigns.aspx>

- Sponsor<http://www.fightdementia.org.au/get-involved/sponsorship.aspx>

-

Volunteer<http://www.fightdementia.org.au/get-involved/volunteering.aspx>

- Fight Dementia

Campaign<http://www.fightdementia.org.au/get-involved/campaign.aspx>

[image: Donate]

*Donate*

Your help and support is vital to Alzheimer's

Australia.<http://www.fightdementia.org.au/get-involved/donate.aspx>

[image: Fight Dementia Campaign]

*Fight Dementia Campaign*

Join the fight and support the

campaign<http://www.fightdementia.org.au/campaign.aspx>

- What’s On <http://www.fightdementia.org.au/whats-on.aspx>

- Education and

training<http://www.fightdementia.org.au/whats-on/education--training.aspx>

- Events <http://www.fightdementia.org.au/whats-on/Events.aspx>

- Alzheimer's Australia 14th National

Conference<http://www.fightdementia.org.au/whats-on/national-conference.aspx>

- Other Events<http://www.fightdementia.org.au/whats-on/other-events.aspx>

[image: Education and training]

*Education and training*

Courses and workshops for people with dementia, families, carers,

service providers and care

workers<http://www.fightdementia.org.au/whats-on/education--training.aspx>

[image: Events]

*Events*

National and local events available for families, carers, people with

dementia and the general

public.<http://www.fightdementia.org.au/whats-on/Events.aspx>

- About Us <http://www.fightdementia.org.au/about-us.aspx>

- Our history <http://www.fightdementia.org.au/about-us/history.aspx>

- What we do<http://www.fightdementia.org.au/about-us/what-we-do.aspx>

- Vision and

strategy<http://www.fightdementia.org.au/about-us/vision-and-strategy.aspx>

- Governance<http://www.fightdementia.org.au/about-us/Governance.aspx>

- Ambassadors<http://www.fightdementia.org.au/about-us/ambassador.aspx>

- Our

sponsors<http://www.fightdementia.org.au/about-us/sponsors-partners.aspx>

- Contact

us<http://www.fightdementia.org.au/about-us/contact-alzheimers-australia-nationa\

l-office.aspx>

[image: Our history]

*Our history*

Alzheimer's Australia was originally established by family carers of

people with dementia<http://www.fightdementia.org.au/about-us/history.aspx>

[image: What we do]

*What we do*

Alzheimer's Australia administers leading edge national dementia

programs and

services<http://www.fightdementia.org.au/about-us/what-we-do.aspx>

- Research &

Publications<http://www.fightdementia.org.au/research-and-publications.aspx>

-

Research<http://www.fightdementia.org.au/research-publications/research.aspx>

- Access Economics

Reports<http://www.fightdementia.org.au/research-publications/access-economics-r\

eports.aspx>

- Alzheimer's Australia Annual

Reports<http://www.fightdementia.org.au/research-publications/alzheimers-austral\

ia-annual-reports.aspx>

- Alzheimer's Australia Numbered

Publications<http://www.fightdementia.org.au/research-publications/alzheimers-au\

stralia-numbered-publications.aspx>

- Alzheimer's Australia

Newsletters<http://www.fightdementia.org.au/research-publications/alzheimers-aus\

tralia-newsletters.aspx>

- Conference

papers<http://www.fightdementia.org.au/research-publications/conference-papers.a\

spx>

- Other papers and

evaluations<http://www.fightdementia.org.au/research-publications/other-papers-a\

nd-evaluations.aspx>

- Pfizer Health

Reports<http://www.fightdementia.org.au/research-publications/pfizer-health-repo\

rts.aspx>

- Quality Dementia Care

Series<http://www.fightdementia.org.au/research-publications/quality-dementia-ca\

re-papers.aspx>

- Submissions to Australian

Government<http://www.fightdementia.org.au/research-publications/submissions-to-\

australian-government.aspx>

-

Speeches<http://www.fightdementia.org.au/research-publications/speeches.aspx>

- International Guest

Speakers<http://www.fightdementia.org.au/research-publications/international-gue\

st-speakers.aspx>

[image: Research]

*Research*

Alzheimer’s Australia is committed to contributing towards Australian

dementia research.

<http://www.fightdementia.org.au/research-publications/research.aspx>

[image: Access Economics Reports]

*Access Economics Reports*

A number of documents which produce estimates of the current and future

impact of

dementia.<http://www.fightdementia.org.au/research-publications/access-economics\

-reports.aspx>

Alzheimer's Australia Living with dementia

Quick Links

- Aboriginal & Strait Islander

Groups<http://www.fightdementia.org.au/understanding-dementia/aboriginal--torres\

-strait-islander-groups.aspx>

- Cultural Diversity<http://www.fightdementia.org.au/cultural-diversity.aspx>

- Hazel Hawke Alzheimer's Research and Care

Fund<http://www.fightdementia.org.au/hazel-hawke-alzheimers-research-and-care-fu\

nd.aspx>

- Quality Dementia Care

Initiative<http://www.fightdementia.org.au/quality-dementia-care-initiative.aspx\

>

- Library <http://www.fightdementia.org.au/library.aspx>

- Alzheimer's Australia Dementia Research

Foundation<http://www.fightdementia.org.au/dementia-research-foundation.aspx>

- Younger Onset

Dementia<http://www.fightdementia.org.au/younger-onset-dementia.aspx>

- Education and

Training<http://www.fightdementia.org.au/education--training.aspx>

- Information in other

languages<http://www.fightdementia.org.au/information-in-other-languages.aspx>

- An Australian Government

Initiative<http://www.fightdementia.org.au/the-australian-government.aspx>

Sign up for eNewsletter

- Site Map <http://www.fightdementia.org.au/Sitemap.aspx>

- Privacy Statement <http://www.fightdementia.org.au/privacy-policy.aspx>

- Disclaimer <http://www.fightdementia.org.au/disclaimer.aspx>

Facebook<http://www.facebook.com/pages/Alzheimers-Australia/155685287798181>

Twitter <http://twitter.com/AlzheimersAus>

Donate

Here<http://www.fightdementia.org.au/get-involved/one-off-donations.aspx?state=>

- Choose your state

- ACT

- New South Wales

- Northern Territory

- Queensland

- South Australia

- Tasmania

-

- Western Australia

> **

>

>

> Hi Tania

>

> I agree with others...try zoloft. My mom takes it and it seems to help

> with depression. She too was doing alot of crying and having suicidal

> thoughts in the beginning. My mom has been on Aricept since she was

> diagnosed. She was hallucinating in the beginning but the Aricept ended

> that.

>

> My mom has been in a care home for a year now. We did have to add a small

> dose of seroquel to manage her behavior. It is working.

>

> Hard to believe your Dr is not treating with any meds especially since it

> sounds like your Dad has Parkinsons symptoms. I agree with the others

> ...get another opinion.

>

> Good luck.

> & mom Ginny 88 years

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Thanks for that Pat. I'm going to give them a call to discuss.

I've also been looking at this woman for a while now:

http://www.mq.edu.au/about_us/faculties_and_departments/faculty_of_human_science\

s/asam/our_staff/dr_carolyn_f_orr/

I guess it wouldn't hurt to send her an email to see if she's interested.

Tania :)

>

> > **

> >

> >

> > Hi Tania

> >

> > I agree with others...try zoloft. My mom takes it and it seems to help

> > with depression. She too was doing alot of crying and having suicidal

> > thoughts in the beginning. My mom has been on Aricept since she was

> > diagnosed. She was hallucinating in the beginning but the Aricept ended

> > that.

> >

> > My mom has been in a care home for a year now. We did have to add a small

> > dose of seroquel to manage her behavior. It is working.

> >

> > Hard to believe your Dr is not treating with any meds especially since it

> > sounds like your Dad has Parkinsons symptoms. I agree with the others

> > ...get another opinion.

> >

> > Good luck.

> > & mom Ginny 88 years

> >

> >

> >

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Dear Tania - hello again!

I am so sorry to hear of the ongoing problems you are having with your dad's

doctors and the depression your dad is experiencing.

I would definitely contact Dr Carolyn Orr and get a referral to see her. I

haven't heard of her myself, but reading her credentials is most impressive

and she obviously has a huge interest in LBD. I note that she has worked

together with Professor Glenda Halliday who is doing research into LBD and

Parkinsons Disease at NeuraScience Australia (where I donated Jim's brain)

Your dad is so fortunate to have you acting as his advocate, and in my

experience, you will need to be actively working on your dad's behalf. Not

only because medical staff are so busy and have so many patients, but also

because you know your dad's symptoms and background. I used to have small A5

books which I took with me to every appointment and I would write everything

down. I would also compile a typewritten list of questions each time I

visited a doctor, and made sure that I didn't leave until all the questions

were answered. That helped to keep my brain focused, because so often, when

we would go to an appointment, something would happen, such as his blood

pressure dropping dramatically and he would fall over so that often by the

time I got to sit down in the doctor's surgery, I was already exhausted!

Jim was on Zoloft. Many times, I would just sit with my arms around him

giving him physical reassurance in what must be a scary experience - when

your brain is no longer doing what you want it to do.

If you want to have coffee any time you come to Sydney, please get in touch.

I'm not far from RNSH and Macquarie Uni is only about 20 minutes away so I'm

happy to come to wherever you are.

Elaine

Elaine (62) from Sydney Australia

Carer for four years for husband Jim (82 ) who died peacefully in hospital

on 12th February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of LBD

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi Elaine!

Really glad to hear from my fellow Aussie.

I will get in contact with Carolyn Orr and see what she suggests. I'm feeling

quite frustrated with Dad's neuro for leaving him high and dry like this. I

guess the best measure is to do something instead of nothing, so I'll contact

her tomorrow.

I do have a little book I write things in but I'm going to get a new one. The

current one is almost full! And I too often take typed questions to doctor's

appointments with me.

Dad started the falls prevention program at the hospital last week which is just

great. He did a solid hour of fairly gentle exercise. He was so tired when he

got home, he could barely move but you could tell he was quite happy with

himself for being able to do it. I think he thought he didn't have it in him

anymore. We have another 5 weeks of the course and I'm hoping it will improve

his fitness and prevent any more nasty falls.

Renovations start on my parents' house....soon. We're hoping it will be done by

Christmas but it depends on the contractors. Then Dad won't have to climb over

a bathtub to have a shower, etc, and there'll be a ramp at the front of the

house. Dad gets a little overwhelmed that all that is happening for him but we

want him to stay in his home comfortably and safely.

I sometimes wish I could just transfer everything that you all know about LBD

into my brain so that I would know what to do rather than having to learn as I

go and potentially make mistakes or neglect something but I'm doing the best I

can which is certainly better than nothing. Without my getting involved Dad

would still have a diagnosis (and treatment) for Parkinson's only and he was

going downhill fast.

I keep telling everyone I know about LBD and am still making it my mission to

build more awareness about it.

If anyone is interested, I created a group on Facebook called " Lewy Body

Dementia Information & Support Group (Australia) " so if anyone is interested in

joining, please do.

Thanks again Elaine and I'd definitely love to catch up for a coffee if and when

I can, thank you!!

All the best.

Tania...

>

> Dear Tania - hello again!

>

> I am so sorry to hear of the ongoing problems you are having with your dad's

> doctors and the depression your dad is experiencing.

>

> I would definitely contact Dr Carolyn Orr and get a referral to see her. I

> haven't heard of her myself, but reading her credentials is most impressive

> and she obviously has a huge interest in LBD. I note that she has worked

> together with Professor Glenda Halliday who is doing research into LBD and

> Parkinsons Disease at NeuraScience Australia (where I donated Jim's brain)

>

> Your dad is so fortunate to have you acting as his advocate, and in my

> experience, you will need to be actively working on your dad's behalf. Not

> only because medical staff are so busy and have so many patients, but also

> because you know your dad's symptoms and background. I used to have small A5

> books which I took with me to every appointment and I would write everything

> down. I would also compile a typewritten list of questions each time I

> visited a doctor, and made sure that I didn't leave until all the questions

> were answered. That helped to keep my brain focused, because so often, when

> we would go to an appointment, something would happen, such as his blood

> pressure dropping dramatically and he would fall over so that often by the

> time I got to sit down in the doctor's surgery, I was already exhausted!

>

> Jim was on Zoloft. Many times, I would just sit with my arms around him

> giving him physical reassurance in what must be a scary experience - when

> your brain is no longer doing what you want it to do.

>

> If you want to have coffee any time you come to Sydney, please get in touch.

> I'm not far from RNSH and Macquarie Uni is only about 20 minutes away so I'm

> happy to come to wherever you are.

>

> Elaine

>

> Elaine (62) from Sydney Australia

>

> Carer for four years for husband Jim (82 ) who died peacefully in hospital

> on 12th February 2011.

>

> Brain analysis, as a result of brain donation, has now confirmed the

> diagnosis of LBD

>

>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
 Share
Go to topic listing
×
×
  • Create New...