Re: PD and LBD in families

October 21, 2011

Sandy

Thanks for sharing - do your siblings and cousins worry ? Have u had yourself

tested or done anything to further study if in fact this could be hereditary -

this kind of info pushes me to find out how my bro and I should be handling our

future medical plans? Do we get a brain scan early ?

Any thoughts or comments ?

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@...

> My dad was diagnosed with LBD, his older brother had PD. Both have since

passed away, my dad 9 yrs ago, my uncle 6 yrs ago. My dad was diagnosed with LBD

in 1995. Uncle lived with PD atleast 20 yrs, my dad with LBD, upon diagnosis,

lived 7 yrs. Dad was 65 when he passed. Another family in Iowa one had LBD, a

brother had PD. Sandie and Des Moines, IAdad, Merle, passed from LBD

9-20-02, age 65mum, Jo, passed from LBD 4-29-07, age 78, New Zealand

>

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

> Date: Fri, 21 Oct 2011 15:26:15 -0400

>

> 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

> > > > >

> > > >

> > >

October 21, 2011

Judy- Honestly I don't worry about. I don't really think about it much. What

will be, will be. Cancer is huge in our family, my mom passed away at age 47 of

lung cancer, boy was I thrilled to turn 48 this year. :-) Even with the

cancer, I haven't been tested for anything unless of course, there would be some

type of need. I think it's an individual thought as to whether people want to

be tested or not. I'm chosing not to. As I mentioned, I just really don't

think about it. My brother and I don't even think about, seem to not talk

about only because it's not forefront of our thoughts. Again though, each

person and family is different. The other family I mentioned contacted me when

my dad's obit was in our local paper. That's when I learned they also had PD

and LBD in their family. My mother-in-law (MIL) in New Zealand passed from LBD

as well. That's how my hubby and I met, a true silver lining. Take care-

Sandie Des Moines, IAdad, Merle, passed from LBD 9-20-02, age 65

----- Re: Re: New TV series about LBD!

> Date: Fri, 21 Oct 2011 15:26:15 -0400

>

> 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

> > > > >

> > > >

> > >

October 21, 2011

Hey sandie

The best part of your post was that U AND THE HUBBY MET DUE TO THE LBD

that's like making lemonade out of lemons !!! Wonderful story and you have a

noble attitude towards the future -

I am a bit too neurotic to be that laid back - not that I'm running for testing

now, but all of these family stories has given me something to put in back of my

mind !

One thing for sure I have watched my loving beautiful mother go from a

brilliant self sufficient and humble person to a fully demented invalid in

diapers who we no longer recognize - on top of that we have spent money that was

earned through continued hard work and saving of my parents and grandparents to

keep mom at home and comfortable - and I do not intend to have my kids watch

this happen to me- physically, mentally, emotionally or financially !

How I will prevent that god only knows -

But this I know for sure - the experience has encouraged me to live life fully

every day - to choose work that I love and most importantly to love my husband

and family more and more everyday - i am more generous to my kids NOW since I

see how my mom - so young - waited to live and give and never got to DUE to

this miserable 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- Honestly I don't worry about. I don't really think about it much. What

will be, will be. Cancer is huge in our family, my mom passed away at age 47 of

lung cancer, boy was I thrilled to turn 48 this year. :-) Even with the cancer,

I haven't been tested for anything unless of course, there would be some type of

need. I think it's an individual thought as to whether people want to be tested

or not. I'm chosing not to. As I mentioned, I just really don't think about it.

My brother and I don't even think about, seem to not talk about only because

it's not forefront of our thoughts. Again though, each person and family is

different. The other family I mentioned contacted me when my dad's obit was in

our local paper. That's when I learned they also had PD and LBD in their family.

My mother-in-law (MIL) in New Zealand passed from LBD as well. That's how my

hubby and I met, a true silver lining. Take care- Sandie Des Moines, IAdad,

Merle, passed fr om LBD 9-20-02, age 65

>

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

> > Date: Fri, 21 Oct 2011 15:26:15 -0400

> >

> > 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@...

> >

> > On Oct 21, 2011, at 12:27 PM, " 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

> > > > > >

> > > > >

> > > >

October 21, 2011

If you are younger than 65 (medicare age) then I would suggest you think long

and hard about getting any testing that might muddy the possibiity of keeping

medical insurance. They will drop you like a rock if they think you might cost

them something. When you get to Medicare age they cannot base acceptance on

medical history. The only question you could be asked is whether you have ESRD

(End Stage Renal Disease) and there is a different program for those folks. But

before age 65 they can pick and choose and they are picking healthy people and

choosing to not accept those who may have genetics that would predispose them to

get a costly illness. LBD IS a costly illness. Nan (wife to Del who passed in

May of '11 from PD/LBD)

> > > > > >

> > > > > ...

> > > > > > 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

> > > > > >

> > > > >

> > > >

October 21, 2011

Hi nan

Great point !

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

> If you are younger than 65 (medicare age) then I would suggest you think long