Re: LBDA Online Chat Event

[Guest guest]

Just a reminder that it was requested to get questions to me for this

Online Chat Event by 9 PM tonight - 3/23... You can still register if

anyone else is interested in attending the online event on 3/28. Just

send me a personal email if you're interested.

>

> LBDA ONLINE CHAT EVENT

> featuring

> STEPHEN N. GOMPERTS, MD, PHD

> Assistant in Neurology, Memory and Movement Disorder Unit (MMDU),

> Massachusetts General Hospital

> Research Fellow, Picower Institute for Learning & Memory,

> Massachusetts Institute of Technology

>

> Date: Wednesday, March 28, 2007

> Time: 7:00 PM EST

> Duration: 1 Hour

>

> OVERVIEW:

> LBDA is proud to invite you to a live, real-time Question and

Answer

> (Q & A) session with Dr. N. Gomperts, an Assistant in

Neurology

> at the Memory and Movement Disorder Unit (MMDU) of Massachusetts

> General Hospital. The MMDU is an integral part of the Massachusetts

> Alzheimer's Disease Research Center and is a Udall Parkinson's

> Disease Research Center for Excellence. Dr. Gomperts' clinical and

> clinical research focus is on the cognitive and behavioral problems

> that arise in neurodegenerative disorders, with particular emphasis

> on dementia with Lewy bodies and Parkinson's Disease. His basic

> science focus is on the role of the dopamine system in learning and

> memory.

>

> FORMAT:

> This live event will be held at LBDA's website in an online chat

> room. (For those who are unfamiliar with online chat, it is a

virtual

> method of communication in which all attendees log into an Internet

> chat room and can view or participate in a text-based discussion.

> There is no audio or video with an Online Chat and the only

software

> required is a web browser.)

>

> EVENT DETAILS:

> To register for the event and to receive log-in instructions, email

> the event Moderator, Ruff, octoryrose @yahoo.com (no

> spaces). Because this is our pilot for live chat events, we are

> limiting attendees to 100 people this first time. The transcript of

> the event will later be posted on the LBDA website as well.

>

>

> The information presented during the Online Chat is for

informational

> and educational purposes only and is not intended to substitute the

> professional medical advice or treatment recommendations provided

by

> your doctor.

>

[Guest guest]

Hi ,

Would you please ask the doctor what sort of " pain " medications are

the best to use for LBDers. I know that hospice tends to use

morphine and I have seen that morphine is on the " bad drugs " list.

What are the alternatives.

Thanks,

Daughter of Bill, 91

PS If anyone else has any input on this or experience of hospice

giving morphine to a LO w/ LBD, I would appreciate hearing about

it ...thanks.

> >

> > LBDA ONLINE CHAT EVENT

> > featuring

> > STEPHEN N. GOMPERTS, MD, PHD

> > Assistant in Neurology, Memory and Movement Disorder Unit (MMDU),

> > Massachusetts General Hospital

> > Research Fellow, Picower Institute for Learning & Memory,

> > Massachusetts Institute of Technology

> >

> > Date: Wednesday, March 28, 2007

> > Time: 7:00 PM EST

> > Duration: 1 Hour

> >

> > OVERVIEW:

> > LBDA is proud to invite you to a live, real-time Question and

> Answer

> > (Q & A) session with Dr. N. Gomperts, an Assistant in

> Neurology

> > at the Memory and Movement Disorder Unit (MMDU) of Massachusetts

> > General Hospital. The MMDU is an integral part of the

Massachusetts

> > Alzheimer's Disease Research Center and is a Udall Parkinson's

> > Disease Research Center for Excellence. Dr. Gomperts' clinical

and

> > clinical research focus is on the cognitive and behavioral

problems

> > that arise in neurodegenerative disorders, with particular

emphasis

> > on dementia with Lewy bodies and Parkinson's Disease. His basic

> > science focus is on the role of the dopamine system in learning

and

> > memory.

> >

> > FORMAT:

> > This live event will be held at LBDA's website in an online chat

> > room. (For those who are unfamiliar with online chat, it is a

> virtual

> > method of communication in which all attendees log into an

Internet

> > chat room and can view or participate in a text-based discussion.

> > There is no audio or video with an Online Chat and the only

> software

> > required is a web browser.)

> >

> > EVENT DETAILS:

> > To register for the event and to receive log-in instructions,

email

> > the event Moderator, Ruff, octoryrose @yahoo.com (no

> > spaces). Because this is our pilot for live chat events, we are

> > limiting attendees to 100 people this first time. The transcript

of

> > the event will later be posted on the LBDA website as well.

> >

> >

> > The information presented during the Online Chat is for

> informational

> > and educational purposes only and is not intended to substitute

the

> > professional medical advice or treatment recommendations provided

> by

> > your doctor.

> >

>

[Guest guest]

Yes, it is frustrating to not be able to have a definite pat diagnosis. My

friend, Bill, had his kidney removal surgery for a probable cancer Wednesday. I

waited all day to hear how he was doing. Kaiser finally moved him to a room on

Thursday, almost 24 hrs after surgery. Apparently, they don't have enough beds

here in Sacramento. They kept him sedated yesterday but I could tell he was

hallucinating or having delusions by the few things he did say... " The hospital

is on fire, etc. "

Bill's diagnosis of lbd came after a surgery four yrs ago when he hallucinated

for 3 days afterward. He had falls and cognitive changes for some time before

that, though the falls were just in the few months before his surgery. I

realized something was wrong as he couldn't adjust the thermostat and, once,

when I got out of the car and locked the doors before he was out, he couldn't

get out of the car. He has done well until the last 6 months and seems to be

declining now. I've seen a steady decline over the four years in his ability to

move around and he definitely has developed the lean over the last year. He has

" sundowning " and is up most of the night, in and out of my room talking loudly

and very confused. Now, the neurologist has changed his diagnosis to

Parkinsons. This goes against the reading I've done which indicates early

falls, sensitivity to narcoleptics and early delusions to LBD. The neurologist

says because he doesn't have well formed hallucinations

now, that he thinks he has Parkinsons.

Bill has a very red abdomen and I'm hoping this doesn't mean he has an

infection. I know that is one of the biggest risks in a hospital. I don't want

them to send him home before I can handle him again. They have a way of not

telling you what is happening with him -- just releasing him to you. I was told

he would be in for two to four days and this is day three. Hopefully, if the

abdomen remains so red, they will keep him until that clears up.

[Guest guest]

linda,

if you need to ask for another opinion before he is discharged if you think he

isnt ready then ask for one, i realize that kaiser goes by its own rules after

talking to jan colello about jims helalth issues.

as for teh lbd diagnosis, many doctors dont want to diagnosis something tjhey

dont know very much about, you may want to ask jan colello who her doctors are,

i am not familiar with calif so i dont know how far you are from here, dena is

also in calif they may be able to help you, good luck and hugs,s haron

---- Lewelling wrote:

Yes, it is frustrating to not be able to have a definite pat diagnosis. My

friend, Bill, had his kidney removal surgery for a probable cancer Wednesday. I

waited all day to hear how he was doing. Kaiser finally moved him to a room on

Thursday, almost 24 hrs after surgery. Apparently, they don't have enough beds

here in Sacramento. They kept him sedated yesterday but I could tell he was

hallucinating or having delusions by the few things he did say... " The hospital

is on fire, etc. "

Bill's diagnosis of lbd came after a surgery four yrs ago when he hallucinated

for 3 days afterward. He had falls and cognitive changes for some time before

that, though the falls were just in the few months before his surgery. I

realized something was wrong as he couldn't adjust the thermostat and, once,

when I got out of the car and locked the doors before he was out, he couldn't

get out of the car. He has done well until the last 6 months and seems to be

declining now. I've seen a steady decline over the four years in his ability to

move around and he definitely has developed the lean over the last year. He has

" sundowning " and is up most of the night, in and out of my room talking loudly

and very confused. Now, the neurologist has changed his diagnosis to

Parkinsons. This goes against the reading I've done which indicates early

falls, sensitivity to narcoleptics and early delusions to LBD. The neurologist

says because he doesn't have well formed hallucinations

now, that he thinks he has Parkinsons.

Bill has a very red abdomen and I'm hoping this doesn't mean he has an

infection. I know that is one of the biggest risks in a hospital. I don't want

them to send him home before I can handle him again. They have a way of not

telling you what is happening with him -- just releasing him to you. I was told

he would be in for two to four days and this is day three. Hopefully, if the

abdomen remains so red, they will keep him until that clears up.

[Guest guest]

Hi ,

Does he have any online material we can read to get an idea of his

research and findings?

Thanks,

Daughter of Bill, 91

> >

> > LBDA ONLINE CHAT EVENT

> > featuring

> > STEPHEN N. GOMPERTS, MD, PHD

> > Assistant in Neurology, Memory and Movement Disorder Unit (MMDU),

> > Massachusetts General Hospital

> > Research Fellow, Picower Institute for Learning & Memory,

> > Massachusetts Institute of Technology

> >

> > Date: Wednesday, March 28, 2007

> > Time: 7:00 PM EST

> > Duration: 1 Hour

> >

> > OVERVIEW:

> > LBDA is proud to invite you to a live, real-time Question and

> Answer

> > (Q & A) session with Dr. N. Gomperts, an Assistant in

> Neurology

> > at the Memory and Movement Disorder Unit (MMDU) of Massachusetts

> > General Hospital. The MMDU is an integral part of the

Massachusetts

> > Alzheimer's Disease Research Center and is a Udall Parkinson's

> > Disease Research Center for Excellence. Dr. Gomperts' clinical

and

> > clinical research focus is on the cognitive and behavioral

problems

> > that arise in neurodegenerative disorders, with particular

emphasis

> > on dementia with Lewy bodies and Parkinson's Disease. His basic

> > science focus is on the role of the dopamine system in learning

and

> > memory.

> >

> > FORMAT:

> > This live event will be held at LBDA's website in an online chat

> > room. (For those who are unfamiliar with online chat, it is a

> virtual

> > method of communication in which all attendees log into an

Internet

> > chat room and can view or participate in a text-based discussion.

> > There is no audio or video with an Online Chat and the only

> software

> > required is a web browser.)

> >

> > EVENT DETAILS:

> > To register for the event and to receive log-in instructions,

email

> > the event Moderator, Ruff, octoryrose @yahoo.com (no

> > spaces). Because this is our pilot for live chat events, we are

> > limiting attendees to 100 people this first time. The transcript

of

> > the event will later be posted on the LBDA website as well.

> >

> >

> > The information presented during the Online Chat is for

> informational

> > and educational purposes only and is not intended to substitute

the

> > professional medical advice or treatment recommendations provided

> by

> > your doctor.

> >

>

[Guest guest]

<snip> Does he have any online material we can read to get an idea of

his research and findings?<snip>

Here's one that I found:

http://www.massgeneral.org/neurology/MADRC/research.html

(look in 2006 Pilot Grant recipients for his project)

And he also works with H. Growdon, M.D. (clinic director of The

Massachusetts Alzheimer's Disease Research Center - in fact, Dr.

Growdon referred Dr. Gomperts to me when I first posed the request to

do this Q & A session) So, it would be useful also to read into the

research findings of MADSR and/or Dr. Growdon:

http://tinyurl.com/yolsbf (this is a list of articles on Pub Med by

Growdon)

and the link at top you can read research studies at Massachusetts

Alzheimer's Disease Research Center.

Ooooh! and lookie here -- another new article that is very

interesting:

Study Confirms Imaging Compound Identifies Amyloid-beta In Human Brain

Science Daily — A team led by Massachusetts General Hospital (MGH)

investigators has confirmed that the imaging agent Pittsburgh

Compound B (PiB) binds to the protein in amyloid plaques that

characterize Alzheimer's disease in the human brain. Their report in

the March Archives of Neurology describes the first postmortem

neuropathological study of a dementia patient who had previously

participated in a PET imaging study using PiB.

....

The autopsy confirmed the diagnosis of dementia with Lewy bodies and

had several findings characteristic of Alzheimer's disease. While

some plaques that typify Alzheimer's were seen, most amyloid-beta was

found in the walls of blood vessels, a condition known as cerebral

amyloid angiopathy.

To read: http://www.sciencedaily.com/releases/2007/03/070312161151.htm

[Guest guest]

: The last one listed has some great

information. Haven't looked at all of them yet.

Thanks.

--- wrote:

> <snip> Does he have any online material we can read

> to get an idea of

> his research and findings?<snip>

>

> Here's one that I found:

>

http://www.massgeneral.org/neurology/MADRC/research.html

> (look in 2006 Pilot Grant recipients for his

> project)

>

> And he also works with H. Growdon, M.D. (clinic

> director of The

> Massachusetts Alzheimer's Disease Research Center -

> in fact, Dr.

> Growdon referred Dr. Gomperts to me when I first

> posed the request to

> do this Q & A session) So, it would be useful also to

> read into the

> research findings of MADSR and/or Dr. Growdon:

>

> http://tinyurl.com/yolsbf (this is a list of

> articles on Pub Med by

> Growdon)

>

> and the link at top you can read research studies at

> Massachusetts

> Alzheimer's Disease Research Center.

>

> Ooooh! and lookie here -- another new article that

> is very

> interesting:

>

> Study Confirms Imaging Compound Identifies

> Amyloid-beta In Human Brain

>

> Science Daily — A team led by Massachusetts General

> Hospital (MGH)

> investigators has confirmed that the imaging agent

> Pittsburgh

> Compound B (PiB) binds to the protein in amyloid

> plaques that

> characterize Alzheimer's disease in the human brain.

> Their report in

> the March Archives of Neurology describes the first

> postmortem

> neuropathological study of a dementia patient who

> had previously

> participated in a PET imaging study using PiB.

>

> ...

>

> The autopsy confirmed the diagnosis of dementia with

> Lewy bodies and

> had several findings characteristic of Alzheimer's

> disease. While

> some plaques that typify Alzheimer's were seen, most

> amyloid-beta was

> found in the walls of blood vessels, a condition

> known as cerebral

> amyloid angiopathy.

>

> To read:

>

http://www.sciencedaily.com/releases/2007/03/070312161151.htm

>

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

Thanks to all of those who attended last night's chat session. It was a

huge success. Dr. Gomperts was able to address all the questions that

were emailed to me. And he answered a few more. The transcript will be

made available ASAP... Matt (the Webmaster at LBDA) is working hard to

get it done and as soon as the transcript is done, it will be posted

here. (and on the LBDA site and will email spouses to post there)

[Guest guest]

Thank you, thank you!

Imogene

In a message dated 3/29/2007 5:06:00 AM Central Standard Time,

octoryrose@... writes:

Thanks to all of those who attended last night's chat session. It was a

huge success. Dr. Gomperts was able to address all the questions that

were emailed to me. And he answered a few more. The transcript will be

made available ASAP... Matt (the Webmaster at LBDA) is working hard to

get it done and as soon as the transcript is done, it will be posted

here. (and on the LBDA site and will email spouses to post there)

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hey ,

Sorry I didn't get here sooner to thank everyone who set up the Online

Chat with Dr. Gomperts. Can't wait for the next one. Good Job it went

really well!!

Dad, 76, LBD

>

> Thanks to all of those who attended last night's chat session. It was

a

> huge success. Dr. Gomperts was able to address all the questions that

> were emailed to me. And he answered a few more. The transcript will

be

> made available ASAP... Matt (the Webmaster at LBDA) is working hard

to

> get it done and as soon as the transcript is done, it will be posted

> here. (and on the LBDA site and will email spouses to post there)

>

>

>

[Guest guest]

Transcript is now available. To get it visit the files section:

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

And then click the folder marked:

LBDA

Lewy Body Dementia Association News

[Guest guest]

Oh my now I won't go to bed tonight. I'll be a good girl and save it for

later, and enjoy it like I should.

Thanks again a million,

Imogene

In a message dated 4/5/2007 11:26:16 AM Central Daylight Time,

octoryrose@... writes:

Transcript is now available. To get it visit the files section:

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

And then click the folder marked:

LBDA

Lewy Body Dementia Association News

************************************** See what's free at http://www.aol.com.

[Guest guest]

Thank you , this was a very good piece, for now and future reference. I

appreciate your work in organizing this. Look forward to another when the time

arises.

Deb

mother 85, diagnosed 2 years ago.

wrote:

Transcript is now available. To get it visit the files section:

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

And then click the folder marked:

LBDA

Lewy Body Dementia Association News

---------------------------------

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