Re: Different day, different diagnosis

[Guest guest]

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]

Tania,

It's merely a confusion of terminology.

PDD is one type of LB dementia. The other type of LB dementia is DLB (Dementia

with Lewy Bodies).

The problem is that not everyone uses this terminology. (This is the

terminology used by the LBDA. It's also the terminology used by Ian Mc,

MD, one of the world's experts in LB dementia.)

Many MDs, as your Dr. Orr, equate LB dementia and DLB.

There are few clinical differences. The good news is that PDD is much more

studied than DLB.

Robin

>

>

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

> today to see a new neurologist today. ...

> 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.

>

[Guest guest]

Mom was diagnosed with LBD with Parkinsonism and aspects of Alzheimer's at

the University of Minnesota. That was in 2008. I saw dementia symptoms

for ten years before that. But her tremors began in her 50's, as have

mine. That was 30 to 40 years ago.

Kathy

> **

>

>

>

> 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/.<http://www.mq.edu.au/about_us/facult\

ies_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.

>

>

>

--

Kate Knapp, OIT

University of Minnesota

" We ask ourselves, 'Who am I to be brilliant, gorgeous, talented and

fabulous?' Actually, who are you not to be? Playing small does not serve

the world. "

- Mandela

[Guest guest]

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

>

[Guest guest]

Hi Tania,

My husband also had PDD, as most have explained, it is in the same spectrum as

LBD. Instead of Lewy Body Dementia, LBD is also an acronym for Lewy Body

Disease, because both Lewy Body Dementia and PDD have Lewy Bodies. The Protein

Cell Bodies on the brain exist in both diseases and are named after a Dr. Lewy.

I attended the first conference on PDD vs. DLB in Washington DC, and it was

determined by the research doctors that both were within the spectrum of LBD.

PDD typically starts out with a Parkinsonism for several years and develops

dementia later. DLB or Dementia with Lewy Bodies (LBD) starts out with dementia

and sometimes is found in earlier ages with early onset dementia, they may or

may not get parkinsonism, but if they do it follows within a year or a short

time after the dementia.

My husband died nearly a year ago in January. He started out with a

Parkinsonism, not a true Parkinson's, but had mostly the Parkinson's gait and

falling a lot. He had it 5 to 6 years before the dementia appeared full blown in

2000. He did have mild hallucinations, mostly of bugs and people in the

room, and also delusions; plus he had Capgras pronounched: (Cap Grah) like the

ending of  Mardigras is pronounced. Not everyone follows the same order of

symptoms, but they all are very similar.

Jan Colello, East Bay, San Francisco Bay Area

Husband, Jim Colello, dx w/ PDD/LBD Oct. 2003

Deceased, January, 2011

 

________________________________

To: LBDcaregivers

Sent: Thursday, December 1, 2011 3:37 AM

Subject: Different day, different diagnosis

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.

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

Welcome to LBDcaregivers. 

[Guest guest]

Yes we heard all that too.

First Parkinsons Disease. Then Multiple Systems Atrophy. Then Lewy Body

Dementia, possibly. LBD is only confirmed post-mortem autopsy. And now Dad is

dying at home with Hospice. On the refrigerator there is a paper with RN

instructions that says Dad has " End Stage Parkinsonism " .

I don't think you can get a definite diagnosis. Doctors guess at one based on

symptoms. Many diseases have overlapping symptoms. Most doctors and nurses

have never heard of LBD and it took alot of effort to try to explain it to them

- from me.

So, in summary, there is not definite diagnosis - I feel, anyway.

We may know something because we are planning on the autopsy for LBD - at B & W

Research Hospital in Boston.

[Guest guest]

Hi Marcia,

Unfortunately protein deposits cannot be seen with most scans. Only the PIB PET

scan -- available in some research centers -- can " see " amyloid deposition.

While the PIB PET scan is truly remarkable, there are limitations. If someone

shows no amyloid in the brain, then certainly DLB is a possibility. If someone

shows amyloid in the brain, DLB can still be a possibility but the person could

also have Alzheimer's. There is one autopsy-confirmed case of a man with DLB

and CAA who had a possible PIB PET scan. (I posted about this on the LBDA Forum

here:

http://community.lbda.org/forum/viewtopic.php?f=14 & t=2706)

My understanding of " white spots " on an MRI is that this is where neurons have

died. We don't know (until a brain autopsy) what has caused the neurons to die

-- whether it be a neurodegenerative process, a stroke, toxin, infection, etc.

As to your Penn State class, I don't believe alpha-synuclein was discovered

until 2001.

It's absolutely true that DLB (or PDD) can only be confirmed upon brain autopsy.

I encourage people to consider donating possible DLB (or PDD) brains to the Mayo

Clinic as they have a large brain bank with interests in multiple disorders. I

hope you will consider donating your mom's brain such that the diagnosis can be

confirmed and the tissue used for research!

When someone reports that a family member has a diagnosis of LB dementia, I take

this with a grain of salt. The diagnostic accuracy is very low -- for pure DLB

I think it's only 33% and for mixed DLB/AD it's 25%. Chances are far more

likely the person DOES NOT have LB dementia.

For several years, on a volunteer basis, I've helped families around the US

accomplish brain donation to the Mayo Clinic. Over half of the neuropathology

reports are returned with not a single Lewy body in the brain! Even MDs on the

LBDA's Science Advisory Committee have misdiagnosed people. Even the smartest

supposed-LBD caregiver I ever knew misdiagnosed his family member. It happens

so frequently, it's no longer shocking to me.

Robin

>

> 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.

>

>

>