Re: Suggestions and cautions on medications?

[Guest guest]

Hi Ann,

And welcome. The symptoms you describe in your dad do sound like he could have

LBD.

Good for you for picking up on that yourself. The article about Scrooge was a

very

interesting read. I really can't comment on his cocktail of meds as they are

all different

than what my mother was on. I just wanted to mention that many of us find our

los with

LBD suffer drippy noses. It can also be a side effect of Aricept, which he is

not taking, so

maybe of something else as well, but it can come with the diagnosis. Hopefully

someone

else here will be able to talk meds with you. All the best in what is to come.

, Oakville Ont.

Mother, age 92, died Aug. 12/06 after 13 year decline from PDD

>

> Hello all,

>

> I'm new on this list. For the past three years, my father has

> had increasing signs of mental difficulty - short term memory loss

> at first, and now serious confusion, delusions, and some Parkinsonian

> symptoms... He's widowed, at home, has attendants for most of the

> day and seems generally not unhappy. His neurologist is treating

> him for " progressive dementia " but what I read about Alzheimer's

> seemed different - some times he's fine, sometimes he's very

> confused.

>

>

> The New York Times Magazine had an article two Sundays ago,

> suggesting that the condition Dickens describes for Scrooge was

> from Lewy's Body Disease ...and the description was a very close

> fit for the symptoms I've seen in Dad. When his neurologist

> gets back after New Years, I'll see if he agrees.

>

> What experiences have you had with medications? Dad currently

> takes Razadyne ER (24mg per day) and Namenda (10 mg twice a day)

> for the mental problems. He also takes Vesicare (10 mg) and Flomax

> (.8mg) for urinary frequency, Lexapro (10 mg twice a day) for

> depression, and Astelin (137 mcg) for chronic nasal drip which

> is probably caused by something else he's taking.

>

> The descriptions of LBD suggest that patients are very sensitive

> to medications, and I'd like to know which ones have caused problems

> in your experience.

>

>

> Best regards,

>

>

> Ann

>

[Guest guest]

Hi Ann,

Sorry you have to be here, but your father sounds like he has Lewy Body

behaviors and you are probably in the right place.

My husband is not on the medications that your father is on, so I can not give

any advice on them. My husband is on Sinemet, Seroquel, Atenolol and Vicadin.

I can tell you that the drippy nose is a Lewy thing and very common amongst

our Loved Ones. It might be one of the Lewy Drugs, but since my husband is not

on what your father is on, I think it has to do with Lewy Disease. Many of us

have recognized this symptom amongst our Loved Ones.

The medications to really be aware of that should not be given to a Lewy Body

patient is: Antipsychotics like Haldol, Seroquel is an A-typical antipsychotic

and a common one to use with our LBD LOs. Some can tolerate it and some can't.

NO Ativan, which can cause adverse reactions. Hospitals like to give Ativan to

calm the patient and with LBD it only makes them more aggressive, so the

hospital will up the dosage to try to calm them and the more the dose given the

worse the aggression becomes. It doesn't seem to go away after that and the

person remains overly aggressive.

Also, anesthetics during surgery can progress the LBD further along. The two

most compatible for LBD and surgery is: Versed and Propofal.

For any congestion over the counter medicataion can make the Loved One very

confused and possibly aggressive. Only Congestion Medication with Guaifenesin

Syrup only is suggested. Jan

" Ann W. on " wrote:

Hello all,

I'm new on this list. For the past three years, my father has

had increasing signs of mental difficulty - short term memory loss

at first, and now serious confusion, delusions, and some Parkinsonian

symptoms... He's widowed, at home, has attendants for most of the

day and seems generally not unhappy. His neurologist is treating

him for " progressive dementia " but what I read about Alzheimer's

seemed different - some times he's fine, sometimes he's very

confused.

The New York Times Magazine had an article two Sundays ago,

suggesting that the condition Dickens describes for Scrooge was

from Lewy's Body Disease ...and the description was a very close

fit for the symptoms I've seen in Dad. When his neurologist

gets back after New Years, I'll see if he agrees.

What experiences have you had with medications? Dad currently

takes Razadyne ER (24mg per day) and Namenda (10 mg twice a day)

for the mental problems. He also takes Vesicare (10 mg) and Flomax

(.8mg) for urinary frequency, Lexapro (10 mg twice a day) for

depression, and Astelin (137 mcg) for chronic nasal drip which

is probably caused by something else he's taking.

The descriptions of LBD suggest that patients are very sensitive

to medications, and I'd like to know which ones have caused problems

in your experience.

Best regards,

Ann

Welcome to LBDcaregivers.

[Guest guest]

Ann -- Welcome to the board. Glad you found us. Thanks for sharing

about how you found us -- many of us thanked the NY Times for that

article they did b/c Lewy Body Dementia is not well-known and any

publicity we see, we get excited. And although I'm sure the writer

didn't have this intention -- but that particular article probably

got more read in that form rather a medical article in the Health &

Wellness area. So kudos to them.

Back to you... The fluctuations and delusions certainly sends out red

flags that it's LBD. But it's a good idea to discuss with your

father's neurologist.

Regarding the meds... It is true that those with LBD can be super

sensitive to meds. 50% of those cannot handle anti-psychotic & other

meds at all. The best advice that's been given has been " start low,

start slow " (one at a time is best!)

In our files section:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

open the folder marked " Medications: The Good, the Bad and the Ugly " -

- within that folder it gives advice about the meds that work and

don't work with those with LBD.

We recently did a poll on the meds that WORK for our LOs in regards

to the cognitive decline -- check it out:

http://health.groups.yahoo.com/group/LBDcaregivers/polls

We also had discussions re: the Lewy nose drip -- some of us feel

it's a side effect to the meds, while others feel that it's a symptom

of LBD (I think we were leaning towards those that show parkinsonism

features, then it's a symptom of LBD)... But we don't really know...

All we know is that many w/ LBD has the nose drip - so it must mean

something.

My mother had success on Exelon (dementia med.), Celexa (depression

med.) and Alpha Lipoic Acid + B1 Vitamin.

And we used the suggested dosage for LBD -- click here to read more

about that: http://www.lewybodydementia.org/Boevelink.php

Visit the board -- we have a links section that has tons of useful

info. To get to the board click the link in my signature.

; loving daughter of Maureen of Boston, MA; dx'd with LBD in

2/2006; fell victim to rapid decline from Risperidone; Was successful

on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept.

30th, 2006.

Visit the LBDCaregivers board on the web:

http://groups.yahoo.com/group/LBDcaregivers/

[Guest guest]

ann,

welcome to our family although it saddens me that you had to look us up. lbd is

a very ugly roller coaster ride. the fluctuating cognition and mentality is one

of the prime symptoms of lbd. with alzheimersand other dementias what the

patient loses is gone, adn they dont realize it is gone, so it is just hardon

the family, but with lbd, the patient and family are all aware of the flucuating

awareness and that in my opinoin is worse for teh patient, and causes depression

in teh patient. the drippy nose is also a sign of lbd although my father didnt

have that symptm. with lbd each patient is different, each patient reacts

differetly to medicines so that mkaes it tougher to treat. victoria has done a

wonderful job setting up teh yahoo home page iwth links to alot of helpful

infrmation

in this group you are family, feel free to yell scream, vent,cry, laugh, giggle,

ask questions, share stories. whatever you need we are here for you. just let

us know how we can help, hugs, sharon m

---- " Ann W. on " wrote:

Hello all,

I'm new on this list. For the past three years, my father has

had increasing signs of mental difficulty - short term memory loss

at first, and now serious confusion, delusions, and some Parkinsonian

symptoms... He's widowed, at home, has attendants for most of the

day and seems generally not unhappy. His neurologist is treating

him for " progressive dementia " but what I read about Alzheimer's

seemed different - some times he's fine, sometimes he's very

confused.

The New York Times Magazine had an article two Sundays ago,

suggesting that the condition Dickens describes for Scrooge was

from Lewy's Body Disease ...and the description was a very close

fit for the symptoms I've seen in Dad. When his neurologist

gets back after New Years, I'll see if he agrees.

What experiences have you had with medications? Dad currently

takes Razadyne ER (24mg per day) and Namenda (10 mg twice a day)

for the mental problems. He also takes Vesicare (10 mg) and Flomax

(.8mg) for urinary frequency, Lexapro (10 mg twice a day) for

depression, and Astelin (137 mcg) for chronic nasal drip which

is probably caused by something else he's taking.

The descriptions of LBD suggest that patients are very sensitive

to medications, and I'd like to know which ones have caused problems

in your experience.

Best regards,

Ann

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away