Re: DLB

[Guest guest]

The diagnoses you got for your Dad sounds much the same as I started out with my

mother........the patient keeps changing symptoms and some just are things (like

the blank stares) you don't add up until you read all about LBD.......If you

read most of the articles you can get from the LBD website or Google, I think

you'll find that some say a good MRI and good reader can detect the protein

bodies but there is no way to be absolutely certain until post mortem (sorry to

be blunt)...the articles and our doctor agree it's usually process of

elimination and good communication of all you are seeing to the doctor......when

I changed doctors for her a few months ago I had used a highliter on several

articles printed on LBD and was amazed at all the things I and our caregivers

had noticed but never added up.....I took those in to the new physician and

laid that out for him......he noticed his own cues after 2 visits and

concurred.......I only found out about LBD after arguing over the side effects

of drugs (antipyschotics) with the old doctor and coming up with all these

remarks aboutLBD

when I googled the drugs......we took Mom off those drugs and got some

improvements in a few days...and switched doctors.....less is better...and even

something like Sudafed can upset what is going on.......last ........if you can

get your point across to the doctor to have him cnsider LBD...do you really want

to put your Dad thru a lot of testing?????...good luck

DLB

My dad has been diagnosed with vascular dementia, however,

I suspect that he has DLB as the symptoms are more closely

alligned with that. I am getting the impression that both receive

similar treatment, with the drugs being mostly a trial and error

scenerio. So would it really be of any benefit to have a

neurological done that might tell us if he has DLB?

He is going very quickly downhill and I want to be informed of

how to slow this degeneration and also about drugs. He is on an

antidepressant, anxiety medicine, and anti-psychotic meds. The

shaking is getting to be a huge issue as it is making even

simple tasks difficult for him. But don't Parkinson meds

sometimes make psychotic behavior worse? Thank you for any

info on your personal experience. e

Welcome to LBDcaregivers.

[Guest guest]

I am fairly new to the group and have been learning so much from

everyone else. Thank you all. I had to respond simply because this

sounds very much like my situation with my grandmother. She was

taking Ativan (lorazepam) along with antidepressant, heart, thyroid,

bp meds, ect. She came down with a cold so the dr. said to give her

sudafed. That was the beginning of our adventure. Her shaking

became so bad that she, too, could no longer do simple tasks. She

wound up in the er where her dr. told me to put her in a nursing

home because she was never going to rebound. I brought her home and

took her off the ativan and sudafed. The tremors subsided but do

occassionally return. As far as the neurologist, I couldn't really

see much point in it since the psychologist is very familar with LBD

and I consult him regarding any change in meds. However, the family

has now decided that she should be pre-enrolled in the brain bank

program in our state. One of the criteria is a complete neurologic

work up. I suppose I will now have to beg for a referral. Just my

thoughts. Good luck.

D.

>

> My dad has been diagnosed with vascular dementia, however,

> I suspect that he has DLB as the symptoms are more closely

> alligned with that. I am getting the impression that both receive

> similar treatment, with the drugs being mostly a trial and error

> scenerio. So would it really be of any benefit to have a

> neurological done that might tell us if he has DLB?

> He is going very quickly downhill and I want to be informed

of

> how to slow this degeneration and also about drugs. He is on an

> antidepressant, anxiety medicine, and anti-psychotic meds. The

> shaking is getting to be a huge issue as it is making even

> simple tasks difficult for him. But don't Parkinson meds

> sometimes make psychotic behavior worse? Thank you for any

> info on your personal experience. e

[Guest guest]

hello.

my name is sharon m and my husband donnie and i caregive for my 70 year old

gfather who has lbd. yes his neurologist finally agreed on that diagnosis since

dad has reacted poorly to several medications including sinemet.

dad is only on exelon and now has added namenda. he also takes a full aspirin,

hctz (blood pressure/diuretic) and zoloft 100mg. we have only had him on

namenda for one week so as of yet i cannot comment on its benefits. he did well

on exelon but it seems to have plateaued so we added namenda. the hospice

nurses said that they have seen namenda work well for up to one year and then

the decline after that is very very quick, can anyone tell me if they have

noticed such to be true?????

dad parkinson smyptoms come and go, in severity and in frequencvy. his walking

is very severe now, and his mood is very very someber and sad. he told me after

we argued about him using bedside commode or urinal versus falling in the

bathroom and hitting tile floor, or tub, sink or toilet as he falls. he told me

he would rather die from a fall or complications from a fall then from this

'damn disease fo the little man in my head' (what he calls lbd) and whom am i to

argue with that, when i was so sick after my failed surgeries i was in teh same

frame of mind -- i am definetly my dads daughter!!!i finally got him to agree to

call for help, but he will wait until i walk by and ask him and then i help him

get up and go to the bathroom i stay close once he is up, but let him go by

himself.

medicines all react different, sinemet made 'the little man in his head' talk

tooo much and about bad things, made dad and ogre a real a**hole too.

he is now unable to remember how to cut his food so we give him everything

chopped as he stuffs his mouth as full as he can,. and then tries to swallow

and cant becuase his mouth is way too full. we keep snacks by his bed, he is

losing weight although he still does have a healthy appetite. as long as he

wants to eat, i will let him eat whatever he desires as long as it doesnt upset

his stomach, we have found he cannot swallow apples even if cut in small pieces,

and cant swallow lettuce so those are boht of his menu. and i now have hospice

and they are wonderful, thye bathe him two times a week ad a nurse comes two

other days a week. so nice to know he is being checked on. i recommend it to

amyone who feels overwhelmed by this awful disease.

good luck, sharon m pensacola, fl

>

>

> Date: 2004/12/27 Mon PM 01:27:22 EST

> To: LBDcaregivers

> Subject: DLB

>

>

>

> My dad has been diagnosed with vascular dementia, however,

> I suspect that he has DLB as the symptoms are more closely

> alligned with that. I am getting the impression that both receive

> similar treatment, with the drugs being mostly a trial and error

> scenerio. So would it really be of any benefit to have a

> neurological done that might tell us if he has DLB?

> He is going very quickly downhill and I want to be informed of

> how to slow this degeneration and also about drugs. He is on an

> antidepressant, anxiety medicine, and anti-psychotic meds. The

> shaking is getting to be a huge issue as it is making even

> simple tasks difficult for him. But don't Parkinson meds

> sometimes make psychotic behavior worse? Thank you for any

> info on your personal experience. e

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>