Re: New adn Dad just diagnosed

[Guest guest]

Stacey -- My Dad also was diagnosed w/ Parkinsons. His

hallucinations began last fall, also.

There are good antipsychotics for LBD. My Dad has been on clozural

since February and has only one bout w/ severe

hallucinations/paranoia since. (He always has hallucinations, but

they are not bothersome to him.)

Others have luck w/ Serequel. See if docs can get him started on

something while in hospital. (Actually, the clozural has to be

started in hospital setting.)

Good Luck. Welcome and hugs to you.

Lori

Detroit

> Hi,

> My name is Stacey and my dad was jsut diagnosed with LBD. He was

orginally diagnosed

> with Parkinsons and has has had bouts of hallucinations and

behavior but it did not get bad

> until last november. Since then he has been in and out of

hospitals and is again in one. In a

> very bad cycle. I am just learning about all this. He is 66 and

my mother is is caregiver but

> recently she has checked out. My sister lives nearby and has

helped as much as she can but

> it is getting hard. I need some advice on medicines. He has jsut

started on exelon which I

> know is a good drug for this The hospitals keep wanting ot give

him antipsychotics but with

> my research I have seen that that is a very bad thing and he has

had a horrible time when he

> has been on them. This is all so hard and now I think we are

going to have to put him in a

> facility and I am not sure if my mother can face that. I guess I

just need some information

> and support. I am going to read around this site but did want to

introduce myself before I

> start with questions.

> Stacey :-)

[Guest guest]

Stacey, my name is also Stacey so I will start signing off with StaceyG if

that is okay?

Sorry you've also found this site but it is a refuge and haven for us with

LO suffering from dimentia/LBD. There is so much KIND advise and you will

get many answers. Pay attention to meds. as I have also found!!!.

I had (my Mom) write some checks today; her electric & mortgage, so we

are on a uphill swing for now I hope. Settling in to new surroundings has

always been difficult for her. Now we have her in the nursing home and

rebounding quite nicely. She keeps packing up to go home. Not as much as at

the other place she was at though. She told me tonight that she thought the

people here were much nicer which is very good indeed.

This morning she was having delusions that she had VD and don't touch her or

sit on the toilet or anything. It was a bit disturbing because a week ago

she said to me she has only been with my Dad; who died almost 11 years ago

now.

I donno but I am surely here for the long long run,

StaceyG

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: New adn Dad just diagnosed

>Date: Mon, 27 Jun 2005 16:15:07 -0000

>

[Guest guest]

Thank you for your responses. They are trying him on something called

ablify(sp?). He is

still in hospital and not sure waht is going ot happen. HE has also lost a lot

of weight and

they have not determinded why yet.

Any advice would be apppreciated.

Stacey :-)

[Guest guest]

Hi Stacey

My MIL lost weight quickly, at 5'2 " , she was 115 lbs, went down to 89

lbs in about 1 year. This happened over 2 years ago. She went through

the specialist treadmill, from different areas of specialty. A blood

doctor tested her for everything, even cancer, nothing. In the end a

year and a half ago, he said that nothing was wrong with her except

malnutrition. Looking back I figure that this had a lot to do with LBD

and not eating. She was diagnosed May 17/05. She is now back to

proper weight, we feed her well. She had been living on her own until

Dec 9/04 when she broke her RT hip(left was Jan 04). So I don't know

if your dad is on his own or not, but if everything is okay after

tests, maybe he is just not eating? Never know, but at least this is

more easily solved and not as devastating, unless of course he doesn't

want to eat. I don't worry every day about proper nutrition if MIL

won't eat. I figure that not worth a fight, something is better than

nothing. Hope you find a satisfactory answer. in borough,

ON

> Thank you for your responses. They are trying him on something

called ablify(sp?). He is

> still in hospital and not sure waht is going ot happen. HE has also

lost a lot of weight and

> they have not determinded why yet.

> Any advice would be apppreciated.

> Stacey :-)

[Guest guest]

Hi Stacey ,

My Mom had a very bad experience with Abilify mixed with amitriptiline,

zoloft, raniditine....my Mom was way over medicated in February and this is

what started me here as the diagnosis is so hard to pinpoint.

My Mom is now only taking 5 mg Lexapro, Namenda 10mg 2xaday, Aricept 10 mg

2xaday, we are about to start her on Risperdonle .05 mg for her auditory

hallucinations.

When we changed to Aricept/Namenda we are worlds better than 2 months prior

of being hospitalized. We didn't know how overprescribed Haldol is and how

frequently it is used for patients that have dimentia. My Mom was on way too

many drugs to begin with because her Psych/Neuro & Primary didn't talk. She

had had too many drugs in her system and the hospitals frequently take them

off all Psychs and they play with their well being; I don't want to believe

this but my Mom is proof.

I hope this helps.

We also had our followup with the Neurosurgeon. He wants to perform a trial

procedure where they drain some of the fluid from the back, for 3 days she

will be hospitalized and they will monitor if her gait, bladder

incontinence, and memory improve. If this helps there is a 80% chance she

has NPH (water on the brain). She is only 70 years old and was living on her

own prior to Feb. 10! I hate to put her through more prodding but we have a

chance here don't you all think?????

Help and hugs to all that care here,

StaceyG.

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: New adn Dad just diagnosed

>Date: Wed, 29 Jun 2005 21:26:48 -0000

>

[Guest guest]

Just did some more investigating in this site and found that the Risperdole

is not a good med for LBD. I have asked them to change it to Seroquel. Did I

do the right thing do you think?

Thanks,

StaceyG

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: RE: Re: New adn Dad just diagnosed

>Date: Wed, 29 Jun 2005 22:50:24 +0000

>

[Guest guest]

YES!

Risperdal(risperidone) made my MIL a stiff, shuffling zombie. Since

coming off this med, she has better mobility and incontinence of

bladder is gone, and now infrequent bowel incontinence as opposed to

daily.

-- In LBDcaregivers , " stacey golden "

<tomnstace2@m...> wrote:

> Just did some more investigating in this site and found that the

Risperdole

> is not a good med for LBD. I have asked them to change it to

Seroquel. Did I

> do the right thing do you think?

>

> Thanks,

> StaceyG

>

> >From: " stacey golden " <tomnstace2@m...>

> >Reply-To: LBDcaregivers

> >To: LBDcaregivers

> >Subject: RE: Re: New adn Dad just diagnosed

> >Date: Wed, 29 Jun 2005 22:50:24 +0000

> >

>

>

>

>

[Guest guest]

Hi,

He was on the seroquel but this was before he got the LBD diagnosis and it made

him the

zombie . We also tried zyprexa and that was even worse. One night at one of

the

hospitals they actually gave him both in one night. You can imagine how that

went. Poor

dad. So far the ablify is ok and they just moved him to a new hospital because

of

insurance so I am not sure what is going to happen.

Thanks for your responses.

I am sorry any of us has to be here but I am glad of the support and the

information.

Stacey Y :-)

> > Just did some more investigating in this site and found that the

> Risperdole

> > is not a good med for LBD. I have asked them to change it to

> Seroquel. Did I

> > do the right thing do you think?

> >

> > Thanks,

> > StaceyG

> >

> > >From: " stacey golden " <tomnstace2@m...>

> > >Reply-To: LBDcaregivers

> > >To: LBDcaregivers

> > >Subject: RE: Re: New adn Dad just diagnosed

> > >Date: Wed, 29 Jun 2005 22:50:24 +0000

> > >

> >

> >

> >

> >

[Guest guest]

Sorry I am still figuring out how to work this and read the posts. I keep

missing some. :-)

Right now dad is on the exelon and abilify. He was on aricept before this

downward spiral

and he was much better, they changed him to remeron and since last November he

has

been in and out of hospitals because the hallucinations and confusion got so

bad. Of

course while in one of the hospitals he got a UTI and then he was sent home his

Primary

did not check to see if UTI was gone and he got a blood infection. Got over

that with the

IV antibiotics but again he was sent home with no followup care ( horrible

Primary doc)

and he got a super infection. So besides the LBD he has had a time of it. He

has lost a lot

of weight but he does eat. So I am thinking absorption problem? He also jsut

had a bout

of B12 def.(can't spell it) :-)

So anyway hopefully they can get his weight back and get his meds in order. I

think this is

the first time that they are actually treating the right thing and hopefully are

going to treat

the other problems too.

Thanks for your responses.

Stacey Y :-)

> > > Just did some more investigating in this site and found that the

> > Risperdole

> > > is not a good med for LBD. I have asked them to change it to

> > Seroquel. Did I

> > > do the right thing do you think?

> > >

> > > Thanks,

> > > StaceyG

> > >

> > > >From: " stacey golden " <tomnstace2@m...>

> > > >Reply-To: LBDcaregivers

> > > >To: LBDcaregivers

> > > >Subject: RE: Re: New adn Dad just diagnosed

> > > >Date: Wed, 29 Jun 2005 22:50:24 +0000

> > > >

> > >

> > >

> > >

> > >