Re: New TV series about LBD!

[Guest guest]

I was so looking forward to Grammer's portrayal of someone with LBD in this

series but won't be able to get it up here in BC. I can't even get into the

trailer! Occasional updates by those watching will be appreciated. Hopefully

it is a successful series and not turned into a comedy.

>

> New TV series about LBD!

>

> Set up your DVRs or VCRs -- on Friday, 10/21 the season premier of " The Boss "

with Kelsey Grammer will be on STARZ at 10 PM EST. In the very first episode,

Kane (Grammer) gets the diagnosis of LBD by his doctor.

>

> " Mayor Tom Kane (Kelsey Grammer) sits like a spider at the center of Chicago's

web of power; a web built on a covenant with the people. They want to be led,

they want disputes settled, jobs dispensed, and loyalties rewarded. If he

achieves through deception and troubling morality, so be it. As long as he gets

the job done, they look the other way.

>

> Yet despite being the most effective mayor in recent history, a degenerative

brain disorder is ripping everything away from him. He can't trust his memory,

his closest allies, or even himself.

>

> Kane's wife Meredith (Connie Nielsen) knows nothing. Theirs is a marriage of

convenience. Kitty O'Neil (Kathleen on), Kane's advisor, has her

suspicions but stays silent. And Kane's political advisor Ezra Stone (

Donovan), a Yale graduate with a rough edge, remains questionless.

>

> Only Emma (Hannah Ware), Kane's estranged daughter, has a chance of learning

his secret. This is going to be the toughest term yet for the Boss. "

>

> You can watch the first episode online here:

> http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

>

[Guest guest]

,

Can you pull it up on your computer?  Hope you got my new email address.

Hugs,

Donna R

Re: New TV series about LBD!

 

I was so looking forward to Grammer's portrayal of someone with LBD in this

series but won't be able to get it up here in BC. I can't even get into the

trailer! Occasional updates by those watching will be appreciated. Hopefully it

is a successful series and not turned into a comedy.

>

> New TV series about LBD!

>

> Set up your DVRs or VCRs -- on Friday, 10/21 the season premier of " The Boss "

with Kelsey Grammer will be on STARZ at 10 PM EST. In the very first episode,

Kane (Grammer) gets the diagnosis of LBD by his doctor.

>

> " Mayor Tom Kane (Kelsey Grammer) sits like a spider at the center of Chicago's

web of power; a web built on a covenant with the people. They want to be led,

they want disputes settled, jobs dispensed, and loyalties rewarded. If he

achieves through deception and troubling morality, so be it. As long as he gets

the job done, they look the other way.

>

> Yet despite being the most effective mayor in recent history, a degenerative

brain disorder is ripping everything away from him. He can't trust his memory,

his closest allies, or even himself.

>

> Kane's wife Meredith (Connie Nielsen) knows nothing. Theirs is a marriage of

convenience. Kitty O'Neil (Kathleen on), Kane's advisor, has her

suspicions but stays silent. And Kane's political advisor Ezra Stone (

Donovan), a Yale graduate with a rough edge, remains questionless.

>

> Only Emma (Hannah Ware), Kane's estranged daughter, has a chance of learning

his secret. This is going to be the toughest term yet for the Boss. "

>

> You can watch the first episode online here:

> http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

>

[Guest guest]

Here's the web URL. http://www.starz.com/originals/Boss/Ep101Listen#

I haven't figured out about the on demand part though.

Barb

> **

>

>

>

>

> ,

>

> Can you pull it up on your computer? Hope you got my new email address.

>

> Hugs,

>

> Donna R

>

> Re: New TV series about LBD!

>

>

>

> I was so looking forward to Grammer's portrayal of someone with LBD in this

> series but won't be able to get it up here in BC. I can't even get into the

> trailer! Occasional updates by those watching will be appreciated. Hopefully

> it is a successful series and not turned into a comedy.

>

>

>

> >

> > New TV series about LBD!

> >

> > Set up your DVRs or VCRs -- on Friday, 10/21 the season premier of " The

> Boss " with Kelsey Grammer will be on STARZ at 10 PM EST. In the very first

> episode, Kane (Grammer) gets the diagnosis of LBD by his doctor.

> >

> > " Mayor Tom Kane (Kelsey Grammer) sits like a spider at the center of

> Chicago's web of power; a web built on a covenant with the people. They want

> to be led, they want disputes settled, jobs dispensed, and loyalties

> rewarded. If he achieves through deception and troubling morality, so be it.

> As long as he gets the job done, they look the other way.

> >

> > Yet despite being the most effective mayor in recent history, a

> degenerative brain disorder is ripping everything away from him. He can't

> trust his memory, his closest allies, or even himself.

> >

> > Kane's wife Meredith (Connie Nielsen) knows nothing. Theirs is a marriage

> of convenience. Kitty O'Neil (Kathleen on), Kane's advisor, has her

> suspicions but stays silent. And Kane's political advisor Ezra Stone (

> Donovan), a Yale graduate with a rough edge, remains questionless.

> >

> > Only Emma (Hannah Ware), Kane's estranged daughter, has a chance of

> learning his secret. This is going to be the toughest term yet for the

> Boss. "

> >

> > You can watch the first episode online here:

> > http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

> >

>

>

[Guest guest]

Barbara, did you actually read something that said " LBD " regarding this show?

> > >

> > > New TV series about LBD!

> > >

> > > Set up your DVRs or VCRs -- on Friday, 10/21 the season premier of " The

> > Boss " with Kelsey Grammer will be on STARZ at 10 PM EST. In the very first

> > episode, Kane (Grammer) gets the diagnosis of LBD by his doctor.

> > >

> > > " Mayor Tom Kane (Kelsey Grammer) sits like a spider at the center of

> > Chicago's web of power; a web built on a covenant with the people. They want

> > to be led, they want disputes settled, jobs dispensed, and loyalties

> > rewarded. If he achieves through deception and troubling morality, so be it.

> > As long as he gets the job done, they look the other way.

> > >

> > > Yet despite being the most effective mayor in recent history, a

> > degenerative brain disorder is ripping everything away from him. He can't

> > trust his memory, his closest allies, or even himself.

> > >

> > > Kane's wife Meredith (Connie Nielsen) knows nothing. Theirs is a marriage

> > of convenience. Kitty O'Neil (Kathleen on), Kane's advisor, has her

> > suspicions but stays silent. And Kane's political advisor Ezra Stone (

> > Donovan), a Yale graduate with a rough edge, remains questionless.

> > >

> > > Only Emma (Hannah Ware), Kane's estranged daughter, has a chance of

> > learning his secret. This is going to be the toughest term yet for the

> > Boss. "

> > >

> > > You can watch the first episode online here:

> > > http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

> > >

> >

> >

[Guest guest]

Hi Donna,

Thank you for your thoughts but I can't get into any links. I wonder if any

Canadians can get in?

> >

> > New TV series about LBD!

> >

> > Set up your DVRs or VCRs -- on Friday, 10/21 the season premier of " The

Boss " with Kelsey Grammer will be on STARZ at 10 PM EST. In the very first

episode, Kane (Grammer) gets the diagnosis of LBD by his doctor.

> >

> > " Mayor Tom Kane (Kelsey Grammer) sits like a spider at the center of

Chicago's web of power; a web built on a covenant with the people. They want to

be led, they want disputes settled, jobs dispensed, and loyalties rewarded. If

he achieves through deception and troubling morality, so be it. As long as he

gets the job done, they look the other way.

> >

> > Yet despite being the most effective mayor in recent history, a degenerative

brain disorder is ripping everything away from him. He can't trust his memory,

his closest allies, or even himself.

> >

> > Kane's wife Meredith (Connie Nielsen) knows nothing. Theirs is a marriage of

convenience. Kitty O'Neil (Kathleen on), Kane's advisor, has her

suspicions but stays silent. And Kane's political advisor Ezra Stone (

Donovan), a Yale graduate with a rough edge, remains questionless.

> >

> > Only Emma (Hannah Ware), Kane's estranged daughter, has a chance of learning

his secret. This is going to be the toughest term yet for the Boss. "

> >

> > You can watch the first episode online here:

> > http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

> >

>

>

>

>

>

[Guest guest]

Thank you Barb. I get into the website fine but then neither episode 1 nor the

trailer will open for me. We don't get Starz here in British Columbia. Hubbie

thinks it could be a broadcasting copyright thing going on. I was very excited

about the series and hope it is a success. They've already picked up 10

episodes for a second season after the initial 8!

> > >

> > > New TV series about LBD!

> > >

> > > Set up your DVRs or VCRs -- on Friday, 10/21 the season premier of " The

> > Boss " with Kelsey Grammer will be on STARZ at 10 PM EST. In the very first

> > episode, Kane (Grammer) gets the diagnosis of LBD by his doctor.

> > >

> > > " Mayor Tom Kane (Kelsey Grammer) sits like a spider at the center of

> > Chicago's web of power; a web built on a covenant with the people. They want

> > to be led, they want disputes settled, jobs dispensed, and loyalties

> > rewarded. If he achieves through deception and troubling morality, so be it.

> > As long as he gets the job done, they look the other way.

> > >

> > > Yet despite being the most effective mayor in recent history, a

> > degenerative brain disorder is ripping everything away from him. He can't

> > trust his memory, his closest allies, or even himself.

> > >

> > > Kane's wife Meredith (Connie Nielsen) knows nothing. Theirs is a marriage

> > of convenience. Kitty O'Neil (Kathleen on), Kane's advisor, has her

> > suspicions but stays silent. And Kane's political advisor Ezra Stone (

> > Donovan), a Yale graduate with a rough edge, remains questionless.

> > >

> > > Only Emma (Hannah Ware), Kane's estranged daughter, has a chance of

> > learning his secret. This is going to be the toughest term yet for the

> > Boss. "

> > >

> > > You can watch the first episode online here:

> > > http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

> > >

> >

> >

[Guest guest]

Right after the credits, the term " Lewy body " and the symptoms are introduced

like a sledgehammer. Survival time is said to be 3-5 years. Incredibly, the MD

said that " haloperidol might be given for the neuroleptic side. " I guess the TV

show's producers didn't understand what they were given from the LBDA.

>

> New TV series about LBD!

>

> Set up your DVRs or VCRs -- on Friday, 10/21 the season premier of " The Boss "

with Kelsey Grammer will be on STARZ at 10 PM EST. In the very first episode,

Kane (Grammer) gets the diagnosis of LBD by his doctor.

>

> " Mayor Tom Kane (Kelsey Grammer) sits like a spider at the center of Chicago's

web of power; a web built on a covenant with the people. They want to be led,

they want disputes settled, jobs dispensed, and loyalties rewarded. If he

achieves through deception and troubling morality, so be it. As long as he gets

the job done, they look the other way.

>

> Yet despite being the most effective mayor in recent history, a degenerative

brain disorder is ripping everything away from him. He can't trust his memory,

his closest allies, or even himself.

>

> Kane's wife Meredith (Connie Nielsen) knows nothing. Theirs is a marriage of

convenience. Kitty O'Neil (Kathleen on), Kane's advisor, has her

suspicions but stays silent. And Kane's political advisor Ezra Stone (

Donovan), a Yale graduate with a rough edge, remains questionless.

>

> Only Emma (Hannah Ware), Kane's estranged daughter, has a chance of learning

his secret. This is going to be the toughest term yet for the Boss. "

>

> You can watch the first episode online here:

> http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

>

[Guest guest]

Here is some information about a new show where the character has LBD. Too bad

it starts at 10:00!

> >

> > To: LBDcaregivers

> > Sent: Sunday, October 16, 2011 12:54:56 PM

> > Subject: Re: New TV series about LBD!

> >

> >

> >

> > I was so looking forward to Grammer's portrayal of someone with LBD in this

> > series but won't be able to get it up here in BC. I can't even get into the

> > trailer! Occasional updates by those watching will be appreciated. Hopefully

> > it is a successful series and not turned into a comedy.

> >

> >

> >

> > >

> > > New TV series about LBD!

> > >

> > > Set up your DVRs or VCRs -- on Friday, 10/21 the season premier of " The

> > Boss " with Kelsey Grammer will be on STARZ at 10 PM EST. In the very first

> > episode, Kane (Grammer) gets the diagnosis of LBD by his doctor.

> > >

> > > " Mayor Tom Kane (Kelsey Grammer) sits like a spider at the center of

> > Chicago's web of power; a web built on a covenant with the people. They want

> > to be led, they want disputes settled, jobs dispensed, and loyalties

> > rewarded. If he achieves through deception and troubling morality, so be it.

> > As long as he gets the job done, they look the other way.

> > >

> > > Yet despite being the most effective mayor in recent history, a

> > degenerative brain disorder is ripping everything away from him. He can't

> > trust his memory, his closest allies, or even himself.

> > >

> > > Kane's wife Meredith (Connie Nielsen) knows nothing. Theirs is a marriage

> > of convenience. Kitty O'Neil (Kathleen on), Kane's advisor, has her

> > suspicions but stays silent. And Kane's political advisor Ezra Stone (

> > Donovan), a Yale graduate with a rough edge, remains questionless.

> > >

> > > Only Emma (Hannah Ware), Kane's estranged daughter, has a chance of

> > learning his secret. This is going to be the toughest term yet for the

> > Boss. "

> > >

> > > You can watch the first episode online here:

> > > http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

> > >

> >

> >

[Guest guest]

I tried to watch the first episode on the Starz website but just can't

get past the nasty language (Lord's name in vain, multiple F-bombs, even

within a single sentence, etc). From what I did see though, Kelsey

Grammer is the perfect actor for the part! I don't get Starz but I would

have ordered it just for this show had it been something I could manage

to get through. Loved the beginning, when the doctor was telling him in

detail what to expect. Whoever wrote it obviously did their research

very well .

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

> > > You can watch the first episode online here:

> > > http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

[Guest guest]

My computer is very slow, so the picture was unable to keep up with the audio,

but I did hear the part where he was given the dx of Lewy Body. It seems to be

very well done. Will try to watch this on a different computer.

>

> I tried to watch the first episode on the Starz website but just can't

> get past the nasty language (Lord's name in vain, multiple F-bombs, even

> within a single sentence, etc). From what I did see though, Kelsey

> Grammer is the perfect actor for the part! I don't get Starz but I would

> have ordered it just for this show had it been something I could manage

> to get through. Loved the beginning, when the doctor was telling him in

> detail what to expect. Whoever wrote it obviously did their research

> very well .

>

> --

> His,

> Sherry

> daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

>

>

>

> > > > You can watch the first episode online here:

> > > > http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

>

[Guest guest]

Definitely not a comedy! I saw the first episode. It wasn't clear how he

managed to get an accurate diagnosis so soon since the only symptoms (shown)

was a shaking hand and buzzing in ears. Wish I got Starz so I could see

more. The portrayal of Chicago politics was scary and it will be interesting

to see how it will proceed.

Pamela

[Guest guest]

Yeah -- 2 things that popped out -- the 'rare' comment & the Haldol comment -- I

posted on the STARZ message board pointing out their errors... Everybody, feel

free to comment on the thread LEWY BODY DEMENTIA -- if they hear from a lot of

people maybe they'll apologize for their error after the 1st episode airs (long

stretch I know)

Here's the link:

http://community.starz.com/t5/Boss/bd-p/Boss

> >

> > New TV series about LBD!

> >

> > Set up your DVRs or VCRs -- on Friday, 10/21 the season premier of " The

Boss " with Kelsey Grammer will be on STARZ at 10 PM EST. In the very first

episode, Kane (Grammer) gets the diagnosis of LBD by his doctor.

> >

> > " Mayor Tom Kane (Kelsey Grammer) sits like a spider at the center of

Chicago's web of power; a web built on a covenant with the people. They want to

be led, they want disputes settled, jobs dispensed, and loyalties rewarded. If

he achieves through deception and troubling morality, so be it. As long as he

gets the job done, they look the other way.

> >

> > Yet despite being the most effective mayor in recent history, a degenerative

brain disorder is ripping everything away from him. He can't trust his memory,

his closest allies, or even himself.

> >

> > Kane's wife Meredith (Connie Nielsen) knows nothing. Theirs is a marriage of

convenience. Kitty O'Neil (Kathleen on), Kane's advisor, has her

suspicions but stays silent. And Kane's political advisor Ezra Stone (

Donovan), a Yale graduate with a rough edge, remains questionless.

> >

> > Only Emma (Hannah Ware), Kane's estranged daughter, has a chance of learning

his secret. This is going to be the toughest term yet for the Boss. "

> >

> > You can watch the first episode online here:

> > http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

> >

>

[Guest guest]

Hi all

I watched about 1/4 of the show on my " nook " today and I want to share and ask

you all -

The episode starts with the doctor telling the mayor he has LBD and what to

expect - but what precipitates this ??

first reaction - When the episode starts the doctor explains what the mayor can

expect - it made me more sure than ever that mom indeed has LBD ! One of the

issues that my mom didn't experience is hallucinations - she had delusions -

that we have no question about - but never saw " hallucinations " and the doctor

in fact mentions delusions and does not highlight hallucinations -

Everything else aside from the life span prediction- they say app 2-5 yrs ( I

think in most cases longer ) was on target !!

QUESTION -

Did I miss something or HOW DID THEY GIVE YHE DIAGNOSIS OF LBD TO THE MAIN

CHARACTER???? what tests or examination was done that lead to the diagnosis ??

Symptoms ??r

Looking forward to more insights from the group!!

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

> Yeah -- 2 things that popped out -- the 'rare' comment & the Haldol comment --

I posted on the STARZ message board pointing out their errors... Everybody, feel

free to comment on the thread LEWY BODY DEMENTIA -- if they hear from a lot of

people maybe they'll apologize for their error after the 1st episode airs (long

stretch I know)

>

> Here's the link:

> http://community.starz.com/t5/Boss/bd-p/Boss

>

>

> > >

> > > New TV series about LBD!

> > >

> > > Set up your DVRs or VCRs -- on Friday, 10/21 the season premier of " The

Boss " with Kelsey Grammer will be on STARZ at 10 PM EST. In the very first

episode, Kane (Grammer) gets the diagnosis of LBD by his doctor.

> > >

> > > " Mayor Tom Kane (Kelsey Grammer) sits like a spider at the center of

Chicago's web of power; a web built on a covenant with the people. They want to

be led, they want disputes settled, jobs dispensed, and loyalties rewarded. If

he achieves through deception and troubling morality, so be it. As long as he

gets the job done, they look the other way.

> > >

> > > Yet despite being the most effective mayor in recent history, a

degenerative brain disorder is ripping everything away from him. He can't trust

his memory, his closest allies, or even himself.

> > >

> > > Kane's wife Meredith (Connie Nielsen) knows nothing. Theirs is a marriage

of convenience. Kitty O'Neil (Kathleen on), Kane's advisor, has her

suspicions but stays silent. And Kane's political advisor Ezra Stone (

Donovan), a Yale graduate with a rough edge, remains questionless.

> > >

> > > Only Emma (Hannah Ware), Kane's estranged daughter, has a chance of

learning his secret. This is going to be the toughest term yet for the Boss. "

> > >

> > > You can watch the first episode online here:

> > > http://www.starz.com/originals/Boss/ScreeningRoom#/episode-1

> > >

> >

>

>

[Guest guest]

Judy,

I think it's shaky to diagnose a family member on the basis of the crap provided

on that show. Fewer than 50% of the brain donation cases I've worked on have

resulted in an autopsy-confirmed diagnosis of DLB. Of the ones that were *not*

DLB, *none* had hallucinations.

Robin

PS. You didn't miss anything.

>

....

> first reaction - When the episode starts the doctor explains what the mayor

can expect - it made me more sure than ever that mom indeed has LBD ! One of the

issues that my mom didn't experience is hallucinations - she had delusions -

that we have no question about - but never saw " hallucinations " and the doctor

in fact mentions delusions and does not highlight hallucinations -

>

....

> QUESTION -

>

> Did I miss something or HOW DID THEY GIVE YHE DIAGNOSIS OF LBD TO THE MAIN

CHARACTER???? what tests or examination was done that lead to the diagnosis ??

Symptoms ??r

>

[Guest guest]

Hi robin

I Agree- but am pleased LBD might get some press and further funding to do

research - especially regarding genetic distribution of inheriting the gene for

LBD ! Does anyone know If the disease " runs in families " ?

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

On Oct 19, 2011, at 11:26 PM, " rriddle_travel "

wrote:

> Judy,

> I think it's shaky to diagnose a family member on the basis of the crap

provided on that show. Fewer than 50% of the brain donation cases I've worked on

have resulted in an autopsy-confirmed diagnosis of DLB. Of the ones that were

*not* DLB, *none* had hallucinations.

> Robin

>

> PS. You didn't miss anything.

>

>

> >

> ...

> > first reaction - When the episode starts the doctor explains what the mayor

can expect - it made me more sure than ever that mom indeed has LBD ! One of the

issues that my mom didn't experience is hallucinations - she had delusions -

that we have no question about - but never saw " hallucinations " and the doctor

in fact mentions delusions and does not highlight hallucinations -

> >

> ...

> > QUESTION -

> >

> > Did I miss something or HOW DID THEY GIVE YHE DIAGNOSIS OF LBD TO THE MAIN

CHARACTER???? what tests or examination was done that lead to the diagnosis ??

Symptoms ??r

> >

>

>

[Guest guest]

Personally, I don't think this is the sort of press the LBD community wants...

>

> Hi robin

>

> I Agree- but am pleased LBD might get some press and further funding to do

research...

[Guest guest]

Up until January this year I worked for Qantas in their inflight entertainment

department. I've just emailed my old workmates the link to watch the first

episode of this series. If it's good, they may just put it on the planes which

means more exposure for LBD! Fingers crossed.

Tania

[Guest guest]

Wow Tania !! Good news! Keep us informed !

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

>

>

> Up until January this year I worked for Qantas in their inflight entertainment

department. I've just emailed my old workmates the link to watch the first

episode of this series. If it's good, they may just put it on the planes which

means more exposure for LBD! Fingers crossed.

>

> Tania

>

>

[Guest guest]

Judy:

Currently the medical and research communities can't definitely say that it runs

in families, however, there are genetic anomalies that they are looking at. My

sister (61) has a DX of LBD, my father died with LBD, my youngest brother (52)

has a PD DX with mild cognitive impairment and our first cousin has PD (78).

Our entire generation is in research, so we continue to hope that they will find

something that will help answer the genetics question.

> > >

> > ...

> > > first reaction - When the episode starts the doctor explains what the

mayor can expect - it made me more sure than ever that mom indeed has LBD ! One

of the issues that my mom didn't experience is hallucinations - she had

delusions - that we have no question about - but never saw " hallucinations "

and the doctor in fact mentions delusions and does not highlight hallucinations

-

> > >

> > ...

> > > QUESTION -

> > >

> > > Did I miss something or HOW DID THEY GIVE YHE DIAGNOSIS OF LBD TO THE MAIN

CHARACTER???? what tests or examination was done that lead to the diagnosis ??

Symptoms ??r

> > >

> >

> >

>

>

>

[Guest guest]

I agree, Robin. No one should identify themselves or a family member as

having LBD based on this, or any other, show. Besides, the show seems to be

more about corrupt politics, with the mayor having LBD simply complicating

those politics. I am glad, though, that LBD is a major part of the plot and

will, presumably, be mentioned often on a show that is on a major (premium)

network with major stars in the primary roles. I do agree that this

exposure could be very helpful, provided they do their homework and try to

be accurate.

Judy, as far as familial issues, when my mother was diagnosed with LBD,

complicated with Parkinsonian aspects and Alzheimer's, we discussed her

family history. Both of her parents had dementia. Only her father was

given a specific diagnosis and that was Alzheimer's. That diagnosis was in

1965. Mom's neuropsych strongly suspects, from what we have told him of my

grandfather's symptoms and behavior, plus his reaction to medications, that

it was really LBD. I am now exhibiting some of Mom's earlier symptoms

(which were, of course, misdiagnosed), most prominently tremors, but also

memory loss, hearing sounds that aren't there, etc. I am going through my

own battery of tests to find out what is going on. Mom's brother has been

in denial about his own symptoms for years. So I absolutely believe there

is a familial aspect to LBD in at least some cases.

Kathy

On Fri, Oct 21, 2011 at 11:27 AM, helen_medsger wrote:

> **

>

>

> Judy:

>

> Currently the medical and research communities can't definitely say that it

> runs in families, however, there are genetic anomalies that they are looking

> at. My sister (61) has a DX of LBD, my father died with LBD, my youngest

> brother (52) has a PD DX with mild cognitive impairment and our first cousin

> has PD (78).

>

> Our entire generation is in research, so we continue to hope that they will

> find something that will help answer the genetics question.

>

>

> > > >

> > > ...

> > > > first reaction - When the episode starts the doctor explains what the

> mayor can expect - it made me more sure than ever that mom indeed has LBD !

> One of the issues that my mom didn't experience is hallucinations - she had

> delusions - that we have no question about - but never saw " hallucinations

> " and the doctor in fact mentions delusions and does not highlight

> hallucinations -

> > > >

> > > ...

> > > > QUESTION -

> > > >

> > > > Did I miss something or HOW DID THEY GIVE YHE DIAGNOSIS OF LBD TO THE

> MAIN CHARACTER???? what tests or examination was done that lead to the

> diagnosis ?? Symptoms ??r

> > > >

> > >

> > >

> >

> >

> >

[Guest guest]

Hi helen

Omg - that's a lot of peeps in your family with a parkinsons or lewy body

diagnosis !! What kind of research are you being observed or tested with and

where ??

I have heard of pd running in families but with LBD being so " new " a diagnosis -

it's good there are studies in motion !!

Saw my mom today and she looks really bad again - she is back on the

carbilevedopa - which I think makes her worse but hospice says she needs it for

the shaking - she looks like she is losing some weight ! Still can't believe

this is my mom -

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

> Judy:

>

> Currently the medical and research communities can't definitely say that it

runs in families, however, there are genetic anomalies that they are looking at.

My sister (61) has a DX of LBD, my father died with LBD, my youngest brother

(52) has a PD DX with mild cognitive impairment and our first cousin has PD

(78).

>

> Our entire generation is in research, so we continue to hope that they will

find something that will help answer the genetics question.

>

>

> > > >

> > > ...

> > > > first reaction - When the episode starts the doctor explains what the

mayor can expect - it made me more sure than ever that mom indeed has LBD ! One

of the issues that my mom didn't experience is hallucinations - she had

delusions - that we have no question about - but never saw " hallucinations "

and the doctor in fact mentions delusions and does not highlight hallucinations

-

> > > >

> > > ...

> > > > QUESTION -

> > > >

> > > > Did I miss something or HOW DID THEY GIVE YHE DIAGNOSIS OF LBD TO THE

MAIN CHARACTER???? what tests or examination was done that lead to the diagnosis

?? Symptoms ??r

> > > >

> > >

> > >

> >

> >

> >

[Guest guest]

Judy:

My youngest brother is part of the PPMI Study that is being funded by the

J Fox Foundation for people that have been recently diagnosed with PD

and haven't been put on medication yet. It's very intensive; first year every 3

months, then, the next four years, every 6 months. In addition to neuro and

neuropsych testing, he undergoes lumbar punctures and DATScans every six months.

The DATScans monitor the uptake of dopamine in his brain, decrease and increase,

before and after medication. His research site is Emory University in Atlanta.

My sister, myself, our 3 brothers and our cousin are part of the PaGeR study at

the University of Washington/VA of Puget Sound in Seattle. This is a genetic

study that includes family history, neuro and neuro psych testing and blood

samples.

My sister is part of dementia and PD related studies at UW/VA of Puget Sound and

the University of California, San Francisco. These have been ongoing for the

past four years and include annual visits.

I have been involved with PD studies at Stanford University as a " healthy

control " . I underwent 2 days of balance testing and functional and structural

MRIs this past July.

Columbia University has ongoing studies on the GBA mutation and how it may

relate to LBD. The Mayo Clinic received $1 million in funding this year

exclusively for research for LBD. As you can see, much is happening in the

research circles.

Judy, it's interesting to me that you are an LCSW. My sister is an MSW that was

executive director of a major social service agency in Northern California for

over 20 years. She was amazing in the programs she developed and people she

inspired. Even with this disease, she continues to inspire.

Helen

> > > > >

> > > > ...

> > > > > first reaction - When the episode starts the doctor explains what the

mayor can expect - it made me more sure than ever that mom indeed has LBD ! One

of the issues that my mom didn't experience is hallucinations - she had

delusions - that we have no question about - but never saw " hallucinations "

and the doctor in fact mentions delusions and does not highlight hallucinations

-

> > > > >

> > > > ...

> > > > > QUESTION -

> > > > >

> > > > > Did I miss something or HOW DID THEY GIVE YHE DIAGNOSIS OF LBD TO THE

MAIN CHARACTER???? what tests or examination was done that lead to the diagnosis

?? Symptoms ??r

> > > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

Helen

Amazing amount of research around on pd and LBD - even more fascinating that u

and your family have FOUND these studies - nan mentioned that it's knot a good

idea to get involved in this testing until one has a diagnosis it until you are

medicate or older - since otherwise health insurance companies will run the

other way !

Social work is awesome but a service -since Few social workers get paid a

competitive salary compared to other professions - I worked on research Project

in 2001 -2004 sponsored partially by the for aging in NYC - loved it so much

that I went on to get A research degree -a PhD - now I teach and write - had 3

publications this past year involving midlife women's health - menopause and

women's many roles including caregivers - to the young and old !

Now have decided to move into writing about caregivers to those with dementia

and Alzheimer's-

including further study of caregiver burden with those caring for loved ones

with LBD - and comparing adult children with spouses in regard to the difference

in caregiver burden !

Life has a funny way of Moving our interests - I figure with my knowledge of

doing research and my personal experience it would be a shame not to explore

LBD......

Best,

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

>

> Judy:

>

> My youngest brother is part of the PPMI Study that is being funded by the

J Fox Foundation for people that have been recently diagnosed with PD

and haven't been put on medication yet. It's very intensive; first year every 3

months, then, the next four years, every 6 months. In addition to neuro and

neuropsych testing, he undergoes lumbar punctures and DATScans every six months.

The DATScans monitor the uptake of dopamine in his brain, decrease and increase,

before and after medication. His research site is Emory University in Atlanta.

>

> My sister, myself, our 3 brothers and our cousin are part of the PaGeR study

at the University of Washington/VA of Puget Sound in Seattle. This is a genetic

study that includes family history, neuro and neuro psych testing and blood

samples.

>

> My sister is part of dementia and PD related studies at UW/VA of Puget Sound

and the University of California, San Francisco. These have been ongoing for the

past four years and include annual visits.

>

> I have been involved with PD studies at Stanford University as a " healthy

control " . I underwent 2 days of balance testing and functional and structural

MRIs this past July.

>

> Columbia University has ongoing studies on the GBA mutation and how it may

relate to LBD. The Mayo Clinic received $1 million in funding this year

exclusively for research for LBD. As you can see, much is happening in the

research circles.

>

> Judy, it's interesting to me that you are an LCSW. My sister is an MSW that

was executive director of a major social service agency in Northern California

for over 20 years. She was amazing in the programs she developed and people she

inspired. Even with this disease, she continues to inspire.

>

> Helen

>

> > > > > >

> > > > > ...

> > > > > > first reaction - When the episode starts the doctor explains what

the mayor can expect - it made me more sure than ever that mom indeed has LBD !

One of the issues that my mom didn't experience is hallucinations - she had

delusions - that we have no question about - but never saw " hallucinations "

and the doctor in fact mentions delusions and does not highlight hallucinations

-

> > > > > >

> > > > > ...

> > > > > > QUESTION -

> > > > > >

> > > > > > Did I miss something or HOW DID THEY GIVE YHE DIAGNOSIS OF LBD TO

THE MAIN CHARACTER???? what tests or examination was done that lead to the

diagnosis ?? Symptoms ??r

> > > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > >

[Guest guest]

Helen,

Does this frighten you? Do you look for symptoms in yourself? A couple of

weeks ago I was dozing in the living room when I punched the air in conjunction

with what was happening in my dream. It was so strange because I knew that I

was about to do it in my semi-sleep state, that it didn't make any sense, but I

did it anyway. I was so upset about this and found it hard to get it out of my

thoughts for days. I haven't talked to anyone about it until now. We saw my

mom reaching out and gathering in her sleep for years--definitely among her

first symptoms. I'm scared.

(daughter and caregiver of Lois, 86 yrs old)

> > > >

> > > ...

> > > > first reaction - When the episode starts the doctor explains what the

mayor can expect - it made me more sure than ever that mom indeed has LBD ! One

of the issues that my mom didn't experience is hallucinations - she had

delusions - that we have no question about - but never saw " hallucinations "

and the doctor in fact mentions delusions and does not highlight hallucinations

-

> > > >

> > > ...

> > > > QUESTION -

> > > >

> > > > Did I miss something or HOW DID THEY GIVE YHE DIAGNOSIS OF LBD TO THE

MAIN CHARACTER???? what tests or examination was done that lead to the diagnosis

?? Symptoms ??r

> > > >

> > >

> > >

> >

> >

> >

[Guest guest]

I'd be lying if I said I never think about it and wonder if it might effect me

one day.

My sister's first symptom was that she lost her sense of smell at age 35 and my

brother has had RBD (REM Behavior Disorder) for at least the past 10 years,

probably longer.

If you have concerns about your own sleep pattern, I'd enroll in a sleep study

at a university medical center. One occurrence I wouldn't worry about, but if it

keeps up on a regular basis, I'd have it checked out.

I try really hard not to constantly think about myself in the equation. I

exercise regularly, watch what I eat and whenever my physician needs to consider

a new medication for my allergies, I research the med to determine whether it

may have properties that surpress brain chemicals. One other thing I don't do is

ingest any diet sodas, gum, foods or anything else with artificial sweetners.

Most artificial sweetners affect your brain chemistry to trick you to think the

item is sweet. I've had serious reactions to them and so haven't ingested them

since the early 1980's.

> > > > >

> > > > ...

> > > > > first reaction - When the episode starts the doctor explains what the

mayor can expect - it made me more sure than ever that mom indeed has LBD ! One

of the issues that my mom didn't experience is hallucinations - she had

delusions - that we have no question about - but never saw " hallucinations "

and the doctor in fact mentions delusions and does not highlight hallucinations

-

> > > > >

> > > > ...

> > > > > QUESTION -

> > > > >

> > > > > Did I miss something or HOW DID THEY GIVE YHE DIAGNOSIS OF LBD TO THE

MAIN CHARACTER???? what tests or examination was done that lead to the diagnosis

?? Symptoms ??r

> > > > >

> > > >

> > > >

> > >

> > >

> > >