RE: Re: Hallucinations?

[Guest guest]

From my extensive reading on LBD, not everyone has hallucinations, although they

are very common with the condition. They were the very first symptom my husband

had and they occurred infrequently for several years before any other symptoms

made an appearance. Never were they threatening in nature. My husband saw

people that were not there. He would speak to them, but they never answered.

He still has these episodes, which have not changed in tone since the very

beginning. They are most prevalent in the evening hours.

One thing we all have in common, I believe, is a general helpless feeling

because we want to do something to help our loved one, but don't know what to do

exactly and medical opinions, as we all have seen, are different from one doctor

to the next. Personally, I pray for wisdom daily in dealing with my husband's

condition. My acceptance has come from the knowledge that each day is different

and a symptom today may not be there tomorrow. I simply try to make my husband

as comfortable as possible each day and take care of each day as it comes. The

future will take care of itself.

By all means, if you do not feel your doctor is meeting your needs, get a second

(or third) opinion. At some point, however, we all must come to the knowledge

that it is what it is and we are limited in what we can do to alleviate the

symptoms.

To: LBDcaregivers

From: upnorth@...

Date: Wed, 9 Nov 2011 07:57:00 -0500

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

anything

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.

> >