Re: Re: Different day, different diagnosis

[Guest guest]

Hi Tania

I'm glad nan suggested that PDD and LBD

Are pretty much the same -

My mother showed park symptoms first then cognitive problems including delusions

and no hallucinations - due to the rapid decline the neurologist said it wasn't

just parkinsons and suggested she had

LBD /PDD ! I researched the two extensively and found that as Nan suggests the

two are pretty much the same - and are noted to move more rapidly than patients

that have either or - Parkinsons- dementia !

Did the neurologist explain that the two are prettying the same??

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 husband passed away in May. He had Parkinson's for many years and the

dementia came much later. There is no difference between PDD and LBD except for

the brain areas that are hit. In PDD, the brain has changes due to Alpha

Synuclean Proteins being laid down in the areas that control movement. If those

same proteins occur in the cortex it is called Pure Lewy Body Dementia. If it

occurs all throughout the brain it is called Diffuse Lewy Body. My husband had

no hallucinations or delusions until a year before he died. That's because it

took that long for the brain to lay down the proteins in the area of the brain

that the hallucinations came from. Same protein. different area. PDD is under

the umbrella of Lewy Body Disease. Nan

>

>

> >

> >

> > We took Dad (dx Parkinson's in 2010, then LBD early 2011) to Sydney

> > today to see a new neurologist today. This is her:

> > http://www.mq.edu.au/about_us/faculties_and_departments/faculty_of_human\

> > _sciences/asam/our_staff/dr_carolyn_f_orr/. For the record, she seems to

> > be an incredible mind and was so thoughtful regarding Dad's condition

> > and feelings. I had forewarned her that his last neuro made some

> > negative comments that had impacted greatly on Dad's depression.

> >

> > We hadn't been happy that since refusing to give Dad any more Seroquel

> > after two days of hell, a couple of months ago, his previous neuro now

> > had him on no meds for LBD at all aside from a tiny dose of Sinemet. We

> > were hoping Dr Orr (the new neuro) may be able to offer some clarity and

> > possibly a better quality of life as Dad's mood had taken a serious turn

> > for the worse.

> >

> > To cut a long story (and 1.5 hour consultation) short, Dr Orr said that

> > Dad does not have LBD. She has instead diagnosed him with PDD

> > (Parkinson's Disease Dementia). She said the tell-tale sign was the fact

> > that Dad had an onset of Parkinson's-related symptoms years before any

> > cognitive decline - something she said just doesn't happen with LBD as

> > it's usually the other way around (ie. cognitive decline, with later

> > Parkinsonian symptoms). I was always suspicious of Dad's diagnosis of

> > LBD as everyone always mentioned hallucinations which Dad didn't really

> > have.

> >

> > I recall someone on here recently saying that a diagnosis of PDD was

> > almost always later confirmed as LBD. But from what I have now

> > researched, as well as what we were told today, it seems highly unlikely

> > that Dad does have LBD.

> >

> > I'm wondering if anyone has had any similar experiences? This is the

> > third diagnosis in less than 2 years. We absolutely trust the woman we

> > saw today and everything she's told us makes sense but the comments of

> > someone on here recently keep replaying in my mind.

> >

> > Thanks, Tania.

> >

>

>

[Guest guest]

Hi Robin,

Thank-you all of you for clearing up the confusion in the terminology used

in this disease and to you Robin for clearing up the differences in proteins

involved. In 2001 I took an advanced neuro class at Penn State and I don't

remember the alpha synuclean proteins even being discussed, only the amyloid

protein deposits of Alzheimers were discussed.

My question is when our loved ones have a brain scan done, and the doctors

talk to us about " white areas " , are these the protein deposits they're

talking about? I know from reading many messages on this site that only a

brain autopsy definitively determines if (using your term) Lewy body

disease is present. Could they be seeing both kinds of proteins? If so,

they would need to be treated differently.

It seems we have a long way to go in treating this disease when it's so hard

to even get a diagnosis.

Marcia B.

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of rriddle_travel

Sent: Thursday, December 01, 2011 1:45 PM

To: LBDcaregivers

Subject: Re: Different day, different diagnosis

Hi Nan,

From the perspective of a pathologist (or neuropathologist), PDD and DLB are

very similar, with only some minor differences. Both can be called " diffuse

Lewy body disease. " One difference is that DLB frequently co-occurs with

Alzheimer's Disease so there would be beta-amyloid deposition in DLB.

Neuropathologists do not use the term " Lewy body dementia " when addressing

pathologic characteristics of a disorder.

Perhaps one can make an argument that PDD starts in the brain in the

substantia nigra and works its way out to the cortex and DLB starts in the

cortex and works its way in, but I'm not sure if we know enough to state

that definitively. My impression is that we don't yet know how Lewy body

disorders evolve over time in the brain.

Robin

>

> My husband passed away in May. He had Parkinson's for many years and the

dementia came much later. There is no difference between PDD and LBD except

for the brain areas that are hit. In PDD, the brain has changes due to Alpha

Synuclean Proteins being laid down in the areas that control movement. If

those same proteins occur in the cortex it is called Pure Lewy Body

Dementia. If it occurs all throughout the brain it is called Diffuse Lewy

Body. My husband had no hallucinations or delusions until a year before he

died. That's because it took that long for the brain to lay down the

proteins in the area of the brain that the hallucinations came from. Same

protein. different area. PDD is under the umbrella of Lewy Body Disease. Nan

>