's Mom & The Many Faces of LBD DVD

March 5, 2006

Thank you again for this DVD - it was great! Most information I knew

already, but did learn a few new things. I just purchased some blank

DVDs so that I can make copies for mom's neurologist (I already told

him about it and he expressed interest); mom's PCP; the head nurse at

the NH; the social worker at the NH; the doctor at the NH; and a copy

for the doctors at the hospital who gave mom the wrong diagnosis

(hoping they watch and learn and not make the same mistake with

someone else).

Looking forward to the supplement DVD...

All good timing too b/c we have mom's Quarterly Family meeting

scheduled for this coming Tuesday. Intend to hand out the DVDs in the

meeting and also express that I'd like the following drugs to be

introduced to mom slooooowly and one at a time (she's still on no

meds at all at this time):

* Exelon (her neurologist had prescribed Memantine - but that drug

works differently and from what I've learned about LBD that Exelon

should be tried first - or something similar like Razadyne - Aricept

wasn't good for mom, so won't try that again...)

* Seroquil (she was on this drug before the biopsy and helped with

her aggitation)

* Antidepressant - Zoloft or Prozac (her neurologist prescribed

Celexa but what I've read on this board it didn't help others)

* Requip (for mom's rapid leg syndrome) (or should it be Sinemet?)

Will also make sure that my request for putting Ativan, Haldol, and

Xanax as allergy drugs in my mom's files actually happened...

Also received mom's biopsy results - so will have a copy in writing

that mom has LBD for their files... The following was the heading of

the biopsy results:

FINAL DIAGNOSIS:

BRAIN AND LEPTOMENINGES (SPECIMENS B-D):

1. LEWY BODY DISEASE (SEE NOTE)

2. CEREBRAL AMYLOID ANGIOPATHY (SEE NOTE)

3. AMYLOID PLAQUES IN CEREBRAL CORTEX (SEE NOTE)

4. ASTROCYTOSIS (SEE NOTE)

5. ARACHNOIDAL FIBROSIS (SEE NOTE)

DURA MATER (SPECIMEN A): NO DIAGNOSTIC ABNORMALITY RECOGNIZED.

So, please let me know if any of the above needs to be tweaked before

our meeting. Thanks in advance...

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid progression from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05.

March 8, 2006

Our Family Meeting was very good. I posed all my requests and

questions. I was assured that they would never give mom the BAD

drugs. They will consider reintroducing her to meds that may help -

sloowly... The team welcomed the copies of the DVD that I handed out.

Attended mom's PT before the meeting and she was doing much better.

They purchased a splint for mom b/c her left arm had been all curled

up since the biopsy and after using it for just 15 minutes the day

before I arrived to find her arm not curled up. Also before the

meeting mom & I were visiting in her bedroom - listening to

Bocelli - and I have a number of 'toys' to help with mom's cognitive

skills and mom said to me that she didn't want to be playing games

(LOL) I have a number of mom's favorite ballet videos and variety of

music CDs in her NH closet and told the team to use them whenever

they want - to entertain mom (as well as the other residents). And to

be safe - forwarded the meeting notes I typed for the family to the

social worker. Mom is getting a haircut today - the nurses washed her

hair last night so that the hairdresser wouldn't have to mess with

her just about healed cut on her head from the biopsy. I'm thrilled

that mom has such a compassionate team working for her benefit.

Thanks for listening!

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid progression from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05.

>

> Thank you again for this DVD - it was great! Most information I

knew

> already, but did learn a few new things. I just purchased some

blank

> DVDs so that I can make copies for mom's neurologist (I already

told

> him about it and he expressed interest); mom's PCP; the head nurse

at

> the NH; the social worker at the NH; the doctor at the NH; and a

copy

> for the doctors at the hospital who gave mom the wrong diagnosis

> (hoping they watch and learn and not make the same mistake with

> someone else).

>

> Looking forward to the supplement DVD...

>

> All good timing too b/c we have mom's Quarterly Family meeting

> scheduled for this coming Tuesday. Intend to hand out the DVDs in

the

> meeting and also express that I'd like the following drugs to be

> introduced to mom slooooowly and one at a time (she's still on no

> meds at all at this time):

>

> * Exelon (her neurologist had prescribed Memantine - but that drug

> works differently and from what I've learned about LBD that Exelon

> should be tried first - or something similar like Razadyne -

Aricept

> wasn't good for mom, so won't try that again...)

>

> * Seroquil (she was on this drug before the biopsy and helped with

> her aggitation)

>

> * Antidepressant - Zoloft or Prozac (her neurologist prescribed

> Celexa but what I've read on this board it didn't help others)

>

> * Requip (for mom's rapid leg syndrome) (or should it be Sinemet?)

>

> Will also make sure that my request for putting Ativan, Haldol, and

> Xanax as allergy drugs in my mom's files actually happened...

>

> Also received mom's biopsy results - so will have a copy in writing

> that mom has LBD for their files... The following was the heading

of

> the biopsy results:

> FINAL DIAGNOSIS:

>

> BRAIN AND LEPTOMENINGES (SPECIMENS B-D):

> 1. LEWY BODY DISEASE (SEE NOTE)

> 2. CEREBRAL AMYLOID ANGIOPATHY (SEE NOTE)

> 3. AMYLOID PLAQUES IN CEREBRAL CORTEX (SEE NOTE)

> 4. ASTROCYTOSIS (SEE NOTE)

> 5. ARACHNOIDAL FIBROSIS (SEE NOTE)

>

> DURA MATER (SPECIMEN A): NO DIAGNOSTIC ABNORMALITY RECOGNIZED.

>

> So, please let me know if any of the above needs to be tweaked

before

> our meeting. Thanks in advance...

>

> ; loving daughter of Maureen of Boston, MA; finally

diagnosed

> with LBD on 2/06 after also being diagnosed with everything from AD

> to Vascular Dementia caused by mini strokes to Binswengers...; was

> victim to rapid progression from Risperidone (or combination of

> Risperidone with other drugs OR possibly received another " bad

drug "

> when she was observed/tested in a hospital in 10/05); in a NH since

> 11/05.

>

March 18, 2006

I thought you all may be interested to hear that I heard from the

doctor from the hospital who gave mom Risperidol after I gave him a

copy of The Many Faces of LBD DVD. This was the same hospital who

diagnosed mom with vascular dementia caused by mini strokes:

He wrote:

Hi , I received your letter yesterday and the CD, thank you

very much.

I am curious how the decision to proceed to brain biopsy was made.

I will certainly share the CD with our staff. Feel free to let me

know if there is anything else we can do to help at this point.

I appreciate the follow-up information, Take care,

-------

I wrote:

My mother's neurologist was still stumped to what exactly was wrong

with my mother - because of the rapidity it was not consistent to

vascular dementia and/or AD. At her last appointment (1/31), he

mentioned that he'd like to find out if she had cerebral vasculitis

and to be sure a brain biopsy was necessary. It was a long shot - but

if she had it, it could be treatable. The family made the difficult

decision to have this done and I was a wreck during and after the

procedure b/c I was naive to how it works... We were fearful that mom

wouldn't make it b/c she was out of it for a long time due to the

post-surgery drugs. She was sleeping 90% of the time for almost 3

weeks...

Luckily my mom is very close to where she was before the biopsy - so

after her body gets a break from the drugs we'll introduce her to

medications that could help some of her LBD symptoms (but slooooowly

and one at a time) - the thought is to work with her on the following

meds (excuse the cut/paste):

* Dementia Med (Exolon or Razadyne - Memantine was prescribed)

* Antidepressant (Prozac or Zoloft - Celexa was prescribed, but

Celexa and Lexapro didn't help others with LBD so may not help mom)

* Seroquil (for mom's aggitation)

* Rapid Leg Movement (or is mom's condition considered just

involuntary movement?) - was prescribed Requip

* Parkinsonism med (Sinemet - although the side effects are

hallucinations and mom may be too far beyond that this med may be of

any use - so this is just a thought here)

Thanks for asking.

----

And he wrote again:

Thanks, .

There have been good benefits from the cholinesterase inhibitors

(especially exelon (aka rivastigmine)) in LBD.

Of all the antipsychotics, seroquel or clozapine are usually the

least likely to cause worsening neurological symptoms such as tremor

and unsteady gait.

My guess is that sinemet would likely make her psychotic symptoms

worse (hallucinations etc…).

Does she have a geriatric psychiatrist at Sherril House who is

managing her meds?

Take care, and good luck,

--------

I was encouraged that he responded so quickly. I hope that his team

learn more about LBD and that if it saves just one family the

heartache that we experienced than it was worth it. His response was

encouraging and shows that he is open to learning from others, even

from those not in the profession.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid progression from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05.

March 18, 2006

Although I agree with you that he is a great doctor - I wouldn't

recommend sending anyone to where this doctor works - the hospital

that my mother went to for 3 weeks. It's suppose to be a leading

hospital, but it was a hell hole. It was scary for my mother - and

I'm sure even more scary because she had LBD there too. I could only

compare it with leaving your loved one in a prison cell when they

were innocent. My mother experienced being assaulted by another

patient, we experienced a nurse lying to us about my mother's

assault, there was a real prisoner staying on the same floor with my

mother, many of my mother's belongings were stolen including her only

pair of shoes, many nurses neglected the patients, and I wouldn't be

surprised if there were mental patients along with the dementia

patients on that floor.

And although I'm happy that this doctor is open to learning more

about LBD; it was too little, too late for my mother b/c she was

misdiagnosed by this team, given the wrong meds, and in turn became

victim to rapid progression. So eventhough I'm encouraged and

appreciate his feedback - I'm more inclined to believe that I may

possibly have saved another family from our experience vs. wanting to

recommend people going to this hospital.

BUT if we had a database on this board where we can recommend Nursing

Homes or Assisted Living Facilities - I would LOVE to recommend my

mother's current Nursing Home (Sherrill House, Boston, MA) where the

entire team is compassionate and caring and is led by a nurse who

has worked there for 35 years on the dementia floor. It has been an

amazing experience to say the least since we have had my mother in

many other living situations - and none of them come close to the

care my mother is receiving right now!!

I will also be inclined to recommend my mother's neurologist - he has

also been very caring and compassionate towards my mother and was not

afraid to try measures not normally tried to figure out exactly what

was wrong with my mother. So I will add him to the database...

>

> :

>

> What a great doctor! Sounds like someone you will be able to work

with. I hope you have recorded his/her name in the doctor's

database.

>

> from Cresswell ON

> (long distance CG to Margaret in Toronto, born 1930 diag LBD

01/2005)

>

March 18, 2006

Way to go ,

One at a time the MDs and professionals will learn and faster if all the

caregivers train their MDs.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

Re: Re: 's Mom & The Many Faces of LBD DVD

March 18, 2006