Re: Just Needing to Vent A Little/April

March 14, 2006

Hi April,

It sounds as if your FIL has PDD Parkinsons Disease

Dementia, which is part of the Lewy Body Spectrum of

Diseases. I attended the Washington DC Symposium and

the doctors have established a Spectrum of Lewy Body

Disease, meaning all the diseases with Lewy Body Fall

under this Spectrum. Lewy Body Dementia, LBD always

starts with dementia first and within a year or less

Parkinsons shows up or it may not show up at all. With

Parkinsons Disease Dementia, PDD the Parkinsons is

diagnosed first and the person has it for several

years before the dementia shows up and the

hallucinations. Both Parkinsons Disease Dementia,PDD

and Lewy Body Dementia have the same symptoms and both

are with Lewy Body only one has a longer range of time

between the diagnosis of Parkinsons and the dementia.

I am not a doctor, but from what I have learned it

really sounds as if your FIL has Parkinsons Disease

Dementia, PDD. There are many others in this support

group with their LO (Loved One) that has Parkinsons

Disease Dementia, my husband being one of them. I hope

this helps you to understand the difference.

Doctors prefer now to call LBD, Lewy Body Disease and

not Lewy Body Dementia, because Lewy Body Disease

covers the entire scope of the Lewy Body Diseases.

As of a few years ago, it was a big controversay with

doctors as to if Lewy Body Dementia, LBD and

Parkinsons Disease Dementia, PDD were one and the same

disease or two separate entities, it is now

established that they are two different entities

within the Lewy Family with the same symptoms, only

PDD has a longer range of Parkinsons before the

dementia/hallucination show up.

Hope this helps you to understand what is going on

with your FIL.......Jan Colello

--- aswest1021 wrote:

> My poor husband is so concerned about his dad. I

> think he, his

> brother, and mom are all starting to see how ill my

> FIL is. As I've

> mentioned before, my FIL was diagnosed with PD and

> having a " touch "

> of LBD. Just from what has happened to him in the

> past two years, I

> have to believe that the LBD is the predominant

> problem. From

> everything I've read, PD does not progress as

> quickly as what's

> happened to my FIL. Can anyone dispute that?

>

> My brother-in-law saw my FIL over the weekend. He

> said that my FIL

> sat around in a stupor. He had that blank look on

> his face and his

> tongue was protruding out of his mouth. He said he

> also had some

> difficulty swallowing his hamburger. He even said

> he had to help my

> FIL use the bathroom several times. We all went on

> a cruise last

> October and he has changed so much even in that

> amount of time. On

> the cruise, he was able to move around on his own,

> with the help of

> a cane and could go to the bathroom without someone

> assisting him.

> He could shower himself, but needed a little

> assistance getting

> dressed. It truly is like night and day. More just

> has to be going

> on other than PD.

>

> Do any of you think my MIL should seek out a second

> opinion? If

> they find that LBD is more of a problem than

> originally thought,

> will the treatment be different than what they're

> doing for his PD?

> He still, to my knowledge, has not had any

> hallucinations, other

> than when he was taking Requip. His cognitive

> skills are delining

> day by day and that is most concerning. It's like

> the life has been

> sucked right out of him. Could it be something other

> than LBD?

>

> Thanks, again, for all your help!

>

> April

>

__________________________________________________

March 14, 2006

Hi April,

It sounds as if your FIL has PDD Parkinsons Disease

Dementia, which is part of the Lewy Body Spectrum of

Diseases. I attended the Washington DC Symposium and

the doctors have established a Spectrum of Lewy Body

Disease, meaning all the diseases with Lewy Body Fall

under this Spectrum. Lewy Body Dementia, LBD always

starts with dementia first and within a year or less

Parkinsons shows up or it may not show up at all. With

Parkinsons Disease Dementia, PDD the Parkinsons is

diagnosed first and the person has it for several

years before the dementia shows up and the

hallucinations. Both Parkinsons Disease Dementia,PDD

and Lewy Body Dementia have the same symptoms and both

are with Lewy Body only one has a longer range of time

between the diagnosis of Parkinsons and the dementia.

I am not a doctor, but from what I have learned it

really sounds as if your FIL has Parkinsons Disease

Dementia, PDD. There are many others in this support

group with their LO (Loved One) that has Parkinsons

Disease Dementia, my husband being one of them. I hope

this helps you to understand the difference.

Doctors prefer now to call LBD, Lewy Body Disease and

not Lewy Body Dementia, because Lewy Body Disease

covers the entire scope of the Lewy Body Diseases.

As of a few years ago, it was a big controversay with

doctors as to if Lewy Body Dementia, LBD and

Parkinsons Disease Dementia, PDD were one and the same

disease or two separate entities, it is now

established that they are two different entities

within the Lewy Family with the same symptoms, only

PDD has a longer range of Parkinsons before the

dementia/hallucination show up.

Hope this helps you to understand what is going on

with your FIL.......Jan Colello

--- aswest1021 wrote:

> My poor husband is so concerned about his dad. I

> think he, his

> brother, and mom are all starting to see how ill my

> FIL is. As I've

> mentioned before, my FIL was diagnosed with PD and

> having a " touch "

> of LBD. Just from what has happened to him in the

> past two years, I

> have to believe that the LBD is the predominant

> problem. From

> everything I've read, PD does not progress as

> quickly as what's

> happened to my FIL. Can anyone dispute that?

>

> My brother-in-law saw my FIL over the weekend. He

> said that my FIL

> sat around in a stupor. He had that blank look on

> his face and his

> tongue was protruding out of his mouth. He said he

> also had some

> difficulty swallowing his hamburger. He even said

> he had to help my

> FIL use the bathroom several times. We all went on

> a cruise last

> October and he has changed so much even in that

> amount of time. On

> the cruise, he was able to move around on his own,

> with the help of

> a cane and could go to the bathroom without someone

> assisting him.

> He could shower himself, but needed a little

> assistance getting

> dressed. It truly is like night and day. More just

> has to be going

> on other than PD.

>

> Do any of you think my MIL should seek out a second

> opinion? If

> they find that LBD is more of a problem than

> originally thought,

> will the treatment be different than what they're

> doing for his PD?

> He still, to my knowledge, has not had any

> hallucinations, other

> than when he was taking Requip. His cognitive

> skills are delining

> day by day and that is most concerning. It's like

> the life has been

> sucked right out of him. Could it be something other

> than LBD?

>

> Thanks, again, for all your help!

>

> April

>

__________________________________________________

March 14, 2006

Hi April,

How long has your FIL been diagnosed with PD before

all this started happening to him that you are

describing? With PDD the confusion and dementia all of

a sudden show up one day when they weren't there the

day before or the week before that you observed

anyway. Now, it is there and will continue to progress

and then the hallucinations show up too one day and it

all comes together. Hallucinations is part of the Lewy

Body Diseases. If all medications are taken away the

Hallucinations should still remain or it is not a true

Lewy Body Disease if Hallucinations are caused from

something else. That is why most doctors will not

diagnose Lewy Body without canceling out all

medications as a contribution to the hallucinations.

Hallucinations are caused by the disease itself, not

from the medications. With Lewy Body Dementia it all

comes at once, first the dementia and then the

Parkinsons within a year or less or sometimes no

Parkinsons at all. Has your FIL been diagnosed with PD

for several years before this all started happening to

him that you are describing? If so, then it is PDD

that your FIL has, which is also Lewy Body. I know I

already explained this to you in another message, but

I did not question if your FIL was diagnosed with

Parkinsons and has he had Parkinsons for several years

before all this other stuff showed up. I am just

trying to make it clear to you about the two Lewy Body

Diseases. I hope I am not sounding redundant to

you........Jan Colello

--- aswest1021 wrote:

> My poor husband is so concerned about his dad. I

> think he, his

> brother, and mom are all starting to see how ill my

> FIL is. As I've

> mentioned before, my FIL was diagnosed with PD and

> having a " touch "

> of LBD. Just from what has happened to him in the

> past two years, I

> have to believe that the LBD is the predominant

> problem. From

> everything I've read, PD does not progress as

> quickly as what's

> happened to my FIL. Can anyone dispute that?

>

> My brother-in-law saw my FIL over the weekend. He

> said that my FIL

> sat around in a stupor. He had that blank look on

> his face and his

> tongue was protruding out of his mouth. He said he

> also had some

> difficulty swallowing his hamburger. He even said

> he had to help my

> FIL use the bathroom several times. We all went on

> a cruise last

> October and he has changed so much even in that

> amount of time. On

> the cruise, he was able to move around on his own,

> with the help of

> a cane and could go to the bathroom without someone

> assisting him.

> He could shower himself, but needed a little

> assistance getting

> dressed. It truly is like night and day. More just

> has to be going

> on other than PD.

>

> Do any of you think my MIL should seek out a second

> opinion? If

> they find that LBD is more of a problem than

> originally thought,

> will the treatment be different than what they're

> doing for his PD?

> He still, to my knowledge, has not had any

> hallucinations, other

> than when he was taking Requip. His cognitive

> skills are delining

> day by day and that is most concerning. It's like

> the life has been

> sucked right out of him. Could it be something other

> than LBD?

>

> Thanks, again, for all your help!

>

> April

>

__________________________________________________

March 15, 2006

Jan,

My FIL was diagnosed with PD almost two years ago at the age of 67.

We've all talked that before that time, he, of course, had some

slight tremors in his hand, but he was just " off " , for lack of a

better description. Something just wasn't quite right about him.

We started noticing signs of cognitive difficulties probably 6-8

mos. prior to his diagnosis. I would say that 6 months or so after

his diagnosis, he started to take a turn for the worse. He began

losing his mobility and had to use a cane. His memory started to

get foggy. He would sometimes say things that made no sense. He,

once, walked into the room rattling off about someone and what they

had done recently. It didn't dawn on my MIL at first, but then she

concluded that he was talking about someone they vaguely knew a long

time ago in another state and hadn't kept in contact with. It was

just so random, but he was convinced the event had happened a day or

so ago. During this time, he was evaluated by a neurologist and

couldn't properly identify the hands on the clock when asked to show

a certain time. His handwriting also became dramatically worse and

he grew very short-tempered. As a few more months went by, he began

having falls. His gait become slower and he developed the blank

stare on his face. He was still able to drive, at that point, but

was having some difficulty. He lost his ability to do simple math

problems and calculate tips. It was probably close to this time

that he was told he might have some LBD. As time has marched on,

particularly in the last 4-6 months, he has really gotten a lot

worse. He lost his ability to drive about 5 months ago because he

ran into a neighbors mailbox. He'd also hopped into the car alone

and drove off behind a church. It took my MIL an hour or two to

find him. When she did, he was wandering aimlessly around in the

church parking lot. Now, he can no longer bathe himself or shampoo

his hair. He has to have help going to the bathroom, getting

dressed, getting into and out of cars, chairs, and bed. He's having

some swallowing difficulties and urinary incontinence. He has to

have help walking. He is delusional and obsessive (particularly

about guns). The Sinemet he's on doesn't seem to help, at all,

other than controlling his tremors somewhat. He has terrible

freezing episodes and gets so rigid he can barely bend his legs to

walk or sit down. His tongue protrudes out of his mouth. He's had

numerous bad falls lately and they seem to be happening more

frequently. I shudder to think what the next 6 months will be

like. My husband doesn't think his dad will be around much longer

at the rate he's progressing. My FIL will see his MDS on Monday, so

I'll be anxious to hear what he finds out. I know my MIL is going

to lay everything on the line and ask for a second opinion. If he

does have PD with Dementia, how is the prognosis different from

LBD? Is it treated any differently? Is this something that could

drag on for years and years? I think that's all our biggest fear.

April

- In LBDcaregivers , Janet Colello

wrote:

>

> Hi April,

> How long has your FIL been diagnosed with PD before

> all this started happening to him that you are

> describing? With PDD the confusion and dementia all of

> a sudden show up one day when they weren't there the

> day before or the week before that you observed

> anyway. Now, it is there and will continue to progress

> and then the hallucinations show up too one day and it

> all comes together. Hallucinations is part of the Lewy

> Body Diseases. If all medications are taken away the

> Hallucinations should still remain or it is not a true

> Lewy Body Disease if Hallucinations are caused from

> something else. That is why most doctors will not

> diagnose Lewy Body without canceling out all

> medications as a contribution to the hallucinations.

> Hallucinations are caused by the disease itself, not

> from the medications. With Lewy Body Dementia it all

> comes at once, first the dementia and then the

> Parkinsons within a year or less or sometimes no

> Parkinsons at all. Has your FIL been diagnosed with PD

> for several years before this all started happening to

> him that you are describing? If so, then it is PDD

> that your FIL has, which is also Lewy Body. I know I

> already explained this to you in another message, but

> I did not question if your FIL was diagnosed with

> Parkinsons and has he had Parkinsons for several years

> before all this other stuff showed up. I am just

> trying to make it clear to you about the two Lewy Body

> Diseases. I hope I am not sounding redundant to

> you........Jan Colello

>

> --- aswest1021 wrote:

>

> > My poor husband is so concerned about his dad. I

> > think he, his

> > brother, and mom are all starting to see how ill my

> > FIL is. As I've

> > mentioned before, my FIL was diagnosed with PD and

> > having a " touch "

> > of LBD. Just from what has happened to him in the

> > past two years, I

> > have to believe that the LBD is the predominant

> > problem. From

> > everything I've read, PD does not progress as

> > quickly as what's

> > happened to my FIL. Can anyone dispute that?

> >

> > My brother-in-law saw my FIL over the weekend. He

> > said that my FIL

> > sat around in a stupor. He had that blank look on

> > his face and his

> > tongue was protruding out of his mouth. He said he

> > also had some

> > difficulty swallowing his hamburger. He even said

> > he had to help my

> > FIL use the bathroom several times. We all went on

> > a cruise last

> > October and he has changed so much even in that

> > amount of time. On

> > the cruise, he was able to move around on his own,

> > with the help of

> > a cane and could go to the bathroom without someone

> > assisting him.

> > He could shower himself, but needed a little

> > assistance getting

> > dressed. It truly is like night and day. More just

> > has to be going

> > on other than PD.

> >

> > Do any of you think my MIL should seek out a second

> > opinion? If

> > they find that LBD is more of a problem than

> > originally thought,

> > will the treatment be different than what they're

> > doing for his PD?

> > He still, to my knowledge, has not had any

> > hallucinations, other

> > than when he was taking Requip. His cognitive

> > skills are delining

> > day by day and that is most concerning. It's like

> > the life has been

> > sucked right out of him. Could it be something other

> > than LBD?

> >

> > Thanks, again, for all your help!

> >

> > April

> >

>

> __________________________________________________

>

March 15, 2006

Hi April,

What your FIL behaviors are like sound like LBD, but

the part about the Parkinsons for only two years

before this all happened kind of throws everything

off.

April, there is a symptom that presents itself to be

Parkinsons and has all the behaviors like Parkinsons,

even some LBD behaviors and many times is mistaken for

Parkinsons. I am so mad at myself, because now I can

not remember the name of it and I am hoping someone

else here knows it or maybe you do. It is a simple

test to see if it is this symptom and it has a cure by

releasing pressure from the brain and when they do

this the person becomes cured of all these Parkinsons

like symptoms. It is called something like NPS, but

that is not it, because I googled that and it didn't

come up. But it is something like that.

A man had this symptom and had all the Parkinson like

qualities that he suffered with until a doctor

familiar with this symptom that I am talking about

gave him a test for that and it turned out he had this

symptom and once the pressure was released from his

brain all was well again. He did an advertisement

about it for awhile on TV, to make people aware of

this symptom. I sure hope someone knows what I am

talking about here. It could help your dad maybe.

Jan

--- aswest1021 wrote:

> Jan,

>

> My FIL was diagnosed with PD almost two years ago at

> the age of 67.

> We've all talked that before that time, he, of

> course, had some

> slight tremors in his hand, but he was just " off " ,

> for lack of a

> better description. Something just wasn't quite

> right about him.

> We started noticing signs of cognitive difficulties

> probably 6-8

> mos. prior to his diagnosis. I would say that 6

> months or so after

> his diagnosis, he started to take a turn for the

> worse. He began

> losing his mobility and had to use a cane. His

> memory started to

> get foggy. He would sometimes say things that made

> no sense. He,

> once, walked into the room rattling off about

> someone and what they

> had done recently. It didn't dawn on my MIL at

> first, but then she

> concluded that he was talking about someone they

> vaguely knew a long

> time ago in another state and hadn't kept in contact

> with. It was

> just so random, but he was convinced the event had

> happened a day or

> so ago. During this time, he was evaluated by a

> neurologist and

> couldn't properly identify the hands on the clock

> when asked to show

> a certain time. His handwriting also became

> dramatically worse and

> he grew very short-tempered. As a few more months

> went by, he began

> having falls. His gait become slower and he

> developed the blank

> stare on his face. He was still able to drive, at

> that point, but

> was having some difficulty. He lost his ability to

> do simple math

> problems and calculate tips. It was probably close

> to this time

> that he was told he might have some LBD. As time

> has marched on,

> particularly in the last 4-6 months, he has really

> gotten a lot

> worse. He lost his ability to drive about 5 months

> ago because he

> ran into a neighbors mailbox. He'd also hopped into

> the car alone

> and drove off behind a church. It took my MIL an

> hour or two to

> find him. When she did, he was wandering aimlessly

> around in the

> church parking lot. Now, he can no longer bathe

> himself or shampoo

> his hair. He has to have help going to the

> bathroom, getting

> dressed, getting into and out of cars, chairs, and

> bed. He's having

> some swallowing difficulties and urinary

> incontinence. He has to

> have help walking. He is delusional and obsessive

> (particularly

> about guns). The Sinemet he's on doesn't seem to

> help, at all,

> other than controlling his tremors somewhat. He has

> terrible

> freezing episodes and gets so rigid he can barely

> bend his legs to

> walk or sit down. His tongue protrudes out of his

> mouth. He's had

> numerous bad falls lately and they seem to be

> happening more

> frequently. I shudder to think what the next 6

> months will be

> like. My husband doesn't think his dad will be

> around much longer

> at the rate he's progressing. My FIL will see his

> MDS on Monday, so

> I'll be anxious to hear what he finds out. I know

> my MIL is going

> to lay everything on the line and ask for a second

> opinion. If he

> does have PD with Dementia, how is the prognosis

> different from

> LBD? Is it treated any differently? Is this

> something that could

> drag on for years and years? I think that's all our

> biggest fear.

>

> April

>

> - In LBDcaregivers , Janet Colello

>

> wrote:

> >

> > Hi April,

> > How long has your FIL been diagnosed with PD

> before

> > all this started happening to him that you are

> > describing? With PDD the confusion and dementia

> all of

> > a sudden show up one day when they weren't there

> the

> > day before or the week before that you observed

> > anyway. Now, it is there and will continue to

> progress

> > and then the hallucinations show up too one day

> and it

> > all comes together. Hallucinations is part of the

> Lewy

> > Body Diseases. If all medications are taken away

> the

> > Hallucinations should still remain or it is not a

> true

> > Lewy Body Disease if Hallucinations are caused

> from

> > something else. That is why most doctors will not

> > diagnose Lewy Body without canceling out all

> > medications as a contribution to the

> hallucinations.

> > Hallucinations are caused by the disease itself,

> not

> > from the medications. With Lewy Body Dementia it

> all

> > comes at once, first the dementia and then the

> > Parkinsons within a year or less or sometimes no

> > Parkinsons at all. Has your FIL been diagnosed

> with PD

> > for several years before this all started

> happening to

> > him that you are describing? If so, then it is PDD

> > that your FIL has, which is also Lewy Body. I know

> I

> > already explained this to you in another message,

> but

> > I did not question if your FIL was diagnosed with

> > Parkinsons and has he had Parkinsons for several

> years

> > before all this other stuff showed up. I am just

> > trying to make it clear to you about the two Lewy

> Body

> > Diseases. I hope I am not sounding redundant to

> > you........Jan Colello

> >

> > --- aswest1021 wrote:

> >

> > > My poor husband is so concerned about his dad.

> I

> > > think he, his

> > > brother, and mom are all starting to see how ill

> my

> > > FIL is. As I've

> > > mentioned before, my FIL was diagnosed with PD

> and

> > > having a " touch "

> > > of LBD. Just from what has happened to him in

> the

> > > past two years, I

> > > have to believe that the LBD is the predominant

> > > problem. From

> > > everything I've read, PD does not progress as

> > > quickly as what's

> > > happened to my FIL. Can anyone dispute that?

> > >

> > > My brother-in-law saw my FIL over the weekend.

> He

> > > said that my FIL

> > > sat around in a stupor. He had that blank look

> on

> > > his face and his

> > > tongue was protruding out of his mouth. He said

> he

> > > also had some

> > > difficulty swallowing his hamburger. He even

> said

> > > he had to help my

> > > FIL use the bathroom several times. We all went

> on

> > > a cruise last

> > > October and he has changed so much even in that

> > > amount of time. On

> > > the cruise, he was able to move around on his

> own,

> > > with the help of

> > > a cane and could go to the bathroom without

> someone

> > > assisting him.

> > > He could shower himself, but needed a little

> > > assistance getting

> > > dressed. It truly is like night and day. More

> just

> > > has to be going

> > > on other than PD.

> > >

>

=== message truncated ===

__________________________________________________

March 15, 2006

> > >

> > > > My poor husband is so concerned about his dad.

> > I

> > > > think he, his

> > > > brother, and mom are all starting to see how ill

> > my

> > > > FIL is. As I've

> > > > mentioned before, my FIL was diagnosed with PD

> > and

> > > > having a " touch "

> > > > of LBD. Just from what has happened to him in

> > the

> > > > past two years, I

> > > > have to believe that the LBD is the predominant

> > > > problem. From

> > > > everything I've read, PD does not progress as

> > > > quickly as what's

> > > > happened to my FIL. Can anyone dispute that?

> > > >

> > > > My brother-in-law saw my FIL over the weekend.

> > He

> > > > said that my FIL

> > > > sat around in a stupor. He had that blank look

> > on

> > > > his face and his

> > > > tongue was protruding out of his mouth. He said

> > he

> > > > also had some

> > > > difficulty swallowing his hamburger. He even

> > said

> > > > he had to help my

> > > > FIL use the bathroom several times. We all went

> > on

> > > > a cruise last

> > > > October and he has changed so much even in that

> > > > amount of time. On

> > > > the cruise, he was able to move around on his

> > own,

> > > > with the help of

> > > > a cane and could go to the bathroom without

> > someone

> > > > assisting him.

> > > > He could shower himself, but needed a little

> > > > assistance getting

> > > > dressed. It truly is like night and day. More

> > just

> > > > has to be going

> > > > on other than PD.

> > > >

> >

> === message truncated ===

>

> __________________________________________________

>

March 15, 2006

It is called NPH. Here is a link about it. A man at my church was recently

diagnosed with it. The treatment has seemed to help relieve the symptoms.

http://www.lifenph.com/

Re: Just Needing to Vent A Little/April

> > >

> > > > My poor husband is so concerned about his dad.

> > I

> > > > think he, his

> > > > brother, and mom are all starting to see how ill

> > my

> > > > FIL is. As I've

> > > > mentioned before, my FIL was diagnosed with PD

> > and

> > > > having a " touch "

> > > > of LBD. Just from what has happened to him in

> > the

> > > > past two years, I

> > > > have to believe that the LBD is the predominant

> > > > problem. From

> > > > everything I've read, PD does not progress as

> > > > quickly as what's

> > > > happened to my FIL. Can anyone dispute that?

> > > >

> > > > My brother-in-law saw my FIL over the weekend.

> > He

> > > > said that my FIL

> > > > sat around in a stupor. He had that blank look

> > on

> > > > his face and his

> > > > tongue was protruding out of his mouth. He said

> > he

> > > > also had some

> > > > difficulty swallowing his hamburger. He even

> > said

> > > > he had to help my

> > > > FIL use the bathroom several times. We all went

> > on

> > > > a cruise last

> > > > October and he has changed so much even in that

> > > > amount of time. On

> > > > the cruise, he was able to move around on his

> > own,

> > > > with the help of

> > > > a cane and could go to the bathroom without

> > someone

> > > > assisting him.

> > > > He could shower himself, but needed a little

> > > > assistance getting

> > > > dressed. It truly is like night and day. More

> > just

> > > > has to be going

> > > > on other than PD.

> > > >

> >

> === message truncated ===

>

> __________________________________________________

>

March 15, 2006

Thanks for sharing the website with me. However, I don't see

anything about the tremors my FIL has or the freezing and rigidity.

I'm not sure NPH is a possible explanation for the rapid decline

seen in my FIL.

April

> > > >

> > > > > My poor husband is so concerned about his dad.

> > > I

> > > > > think he, his

> > > > > brother, and mom are all starting to see how ill

> > > my

> > > > > FIL is. As I've

> > > > > mentioned before, my FIL was diagnosed with PD

> > > and

> > > > > having a " touch "

> > > > > of LBD. Just from what has happened to him in

> > > the

> > > > > past two years, I

> > > > > have to believe that the LBD is the predominant

> > > > > problem. From

> > > > > everything I've read, PD does not progress as

> > > > > quickly as what's

> > > > > happened to my FIL. Can anyone dispute that?

> > > > >

> > > > > My brother-in-law saw my FIL over the weekend.

> > > He

> > > > > said that my FIL

> > > > > sat around in a stupor. He had that blank look

> > > on

> > > > > his face and his

> > > > > tongue was protruding out of his mouth. He said

> > > he

> > > > > also had some

> > > > > difficulty swallowing his hamburger. He even

> > > said

> > > > > he had to help my

> > > > > FIL use the bathroom several times. We all went

> > > on

> > > > > a cruise last

> > > > > October and he has changed so much even in that

> > > > > amount of time. On

> > > > > the cruise, he was able to move around on his

> > > own,

> > > > > with the help of

> > > > > a cane and could go to the bathroom without

> > > someone

> > > > > assisting him.

> > > > > He could shower himself, but needed a little

> > > > > assistance getting

> > > > > dressed. It truly is like night and day. More

> > > just

> > > > > has to be going

> > > > > on other than PD.

> > > > >

> > >

> > === message truncated ===

> >

> > __________________________________________________

> >

March 15, 2006

Hi April,

I have been trying to compare what I have learned from

the Symposium and if your FILs symptoms first showed

up with the cognitive disabilities before the

Parkinsons symptoms of the shuffling gait and frozen

feet and tremors, then it fits as LBD, which begins

with the loss of cognitive abilities and within a year

or less the Parkinsons symptoms show up and then

everything progresses fast from that point. I am just

trying to help you get a more clear view of what might

be happening to your FIL. Of course, it is up to a

doctor to figure it all out, but maybe this can help

you to understand about LBD progression and see if

this fits your FIL.

I wish it was something simple like that

(NPS?) thing. I wish all of us could have it that

simple.

Hope you all find your answers soon for your FIL. My

thoughts and prayers are with you, I am sorry you have

to face all these frustrations. Hugs, Jan

--- aswest1021 wrote:

>

> >

> > > Jan,

> > >

> > > My FIL was diagnosed with PD almost two years

> ago at

> > > the age of 67.

> > > We've all talked that before that time, he, of

> > > course, had some

> > > slight tremors in his hand, but he was just

> " off " ,

> > > for lack of a

> > > better description. Something just wasn't quite

> > > right about him.

> > > We started noticing signs of cognitive

> difficulties

> > > probably 6-8

> > > mos. prior to his diagnosis. I would say that 6

> > > months or so after

> > > his diagnosis, he started to take a turn for the

> > > worse. He began

> > > losing his mobility and had to use a cane. His

> > > memory started to

> > > get foggy. He would sometimes say things that

> made

> > > no sense. He,

> > > once, walked into the room rattling off about

> > > someone and what they

> > > had done recently. It didn't dawn on my MIL at

> > > first, but then she

> > > concluded that he was talking about someone they

> > > vaguely knew a long

> > > time ago in another state and hadn't kept in

> contact

> > > with. It was

> > > just so random, but he was convinced the event

> had

> > > happened a day or

> > > so ago. During this time, he was evaluated by a

> > > neurologist and

> > > couldn't properly identify the hands on the

> clock

> > > when asked to show

> > > a certain time. His handwriting also became

> > > dramatically worse and

> > > he grew very short-tempered. As a few more

> months

> > > went by, he began

> > > having falls. His gait become slower and he

> > > developed the blank

> > > stare on his face. He was still able to drive,

> at

> > > that point, but

> > > was having some difficulty. He lost his ability

> to

> > > do simple math

> > > problems and calculate tips. It was probably

> close

> > > to this time

> > > that he was told he might have some LBD. As

> time

> > > has marched on,

> > > particularly in the last 4-6 months, he has

> really

> > > gotten a lot

> > > worse. He lost his ability to drive about 5

> months

> > > ago because he

> > > ran into a neighbors mailbox. He'd also hopped

> into

> > > the car alone

> > > and drove off behind a church. It took my MIL

> an

> > > hour or two to

> > > find him. When she did, he was wandering

> aimlessly

> > > around in the

> > > church parking lot. Now, he can no longer bathe

> > > himself or shampoo

> > > his hair. He has to have help going to the

> > > bathroom, getting

> > > dressed, getting into and out of cars, chairs,

> and

> > > bed. He's having

> > > some swallowing difficulties and urinary

> > > incontinence. He has to

> > > have help walking. He is delusional and

> obsessive

> > > (particularly

> > > about guns). The Sinemet he's on doesn't seem

> to

> > > help, at all,

> > > other than controlling his tremors somewhat. He

> has

> > > terrible

> > > freezing episodes and gets so rigid he can

> barely

> > > bend his legs to

> > > walk or sit down. His tongue protrudes out of

> his

> > > mouth. He's had

> > > numerous bad falls lately and they seem to be

> > > happening more

> > > frequently. I shudder to think what the next 6

> > > months will be

> > > like. My husband doesn't think his dad will be

> > > around much longer

> > > at the rate he's progressing. My FIL will see

> his

> > > MDS on Monday, so

> > > I'll be anxious to hear what he finds out. I

> know

> > > my MIL is going

> > > to lay everything on the line and ask for a

> second

> > > opinion. If he

> > > does have PD with Dementia, how is the prognosis

> > > different from

> > > LBD? Is it treated any differently? Is this

> > > something that could

> > > drag on for years and years? I think that's all

> our

> > > biggest fear.

> > >

> > > April

> > >

> > > - In LBDcaregivers , Janet

> Colello

>

=== message truncated ===

__________________________________________________

March 15, 2006

Jan,

I read on your profile that your husband was diagnosed with PD about

10 years prior to his diagnosis of PDD. How exactly does that

differ from LBD? Sorry if I'm repeating myself for the millionth

time! Is your husband able to do things for himself now or does he

need a lot of care? Did he do fairly well with the PD before he was

diagnosed with PDD? I still, for the life of me, can't seem to find

a solid explanation for why my FIL's disease is progressing so

rapidly, other than the possibility of LBD.

Thanks for all your help...and prayers!

April

> > >

> > > > Jan,

> > > >

> > > > My FIL was diagnosed with PD almost two years

> > ago at

> > > > the age of 67.

> > > > We've all talked that before that time, he, of

> > > > course, had some

> > > > slight tremors in his hand, but he was just

> > " off " ,

> > > > for lack of a

> > > > better description. Something just wasn't quite

> > > > right about him.

> > > > We started noticing signs of cognitive

> > difficulties

> > > > probably 6-8

> > > > mos. prior to his diagnosis. I would say that 6

> > > > months or so after

> > > > his diagnosis, he started to take a turn for the

> > > > worse. He began

> > > > losing his mobility and had to use a cane. His

> > > > memory started to

> > > > get foggy. He would sometimes say things that

> > made

> > > > no sense. He,

> > > > once, walked into the room rattling off about

> > > > someone and what they

> > > > had done recently. It didn't dawn on my MIL at

> > > > first, but then she

> > > > concluded that he was talking about someone they

> > > > vaguely knew a long

> > > > time ago in another state and hadn't kept in

> > contact

> > > > with. It was

> > > > just so random, but he was convinced the event

> > had

> > > > happened a day or

> > > > so ago. During this time, he was evaluated by a

> > > > neurologist and

> > > > couldn't properly identify the hands on the

> > clock

> > > > when asked to show

> > > > a certain time. His handwriting also became

> > > > dramatically worse and

> > > > he grew very short-tempered. As a few more

> > months

> > > > went by, he began

> > > > having falls. His gait become slower and he

> > > > developed the blank

> > > > stare on his face. He was still able to drive,

> > at

> > > > that point, but

> > > > was having some difficulty. He lost his ability

> > to

> > > > do simple math

> > > > problems and calculate tips. It was probably

> > close

> > > > to this time

> > > > that he was told he might have some LBD. As

> > time

> > > > has marched on,

> > > > particularly in the last 4-6 months, he has

> > really

> > > > gotten a lot

> > > > worse. He lost his ability to drive about 5

> > months

> > > > ago because he

> > > > ran into a neighbors mailbox. He'd also hopped

> > into

> > > > the car alone

> > > > and drove off behind a church. It took my MIL

> > an

> > > > hour or two to

> > > > find him. When she did, he was wandering

> > aimlessly

> > > > around in the

> > > > church parking lot. Now, he can no longer bathe

> > > > himself or shampoo

> > > > his hair. He has to have help going to the

> > > > bathroom, getting

> > > > dressed, getting into and out of cars, chairs,

> > and

> > > > bed. He's having

> > > > some swallowing difficulties and urinary

> > > > incontinence. He has to

> > > > have help walking. He is delusional and

> > obsessive

> > > > (particularly

> > > > about guns). The Sinemet he's on doesn't seem

> > to

> > > > help, at all,

> > > > other than controlling his tremors somewhat. He

> > has

> > > > terrible

> > > > freezing episodes and gets so rigid he can

> > barely

> > > > bend his legs to

> > > > walk or sit down. His tongue protrudes out of

> > his

> > > > mouth. He's had

> > > > numerous bad falls lately and they seem to be

> > > > happening more

> > > > frequently. I shudder to think what the next 6

> > > > months will be

> > > > like. My husband doesn't think his dad will be

> > > > around much longer

> > > > at the rate he's progressing. My FIL will see

> > his

> > > > MDS on Monday, so

> > > > I'll be anxious to hear what he finds out. I

> > know

> > > > my MIL is going

> > > > to lay everything on the line and ask for a

> > second

> > > > opinion. If he

> > > > does have PD with Dementia, how is the prognosis

> > > > different from

> > > > LBD? Is it treated any differently? Is this

> > > > something that could

> > > > drag on for years and years? I think that's all

> > our

> > > > biggest fear.

> > > >

> > > > April

> > > >

> > > > - In LBDcaregivers , Janet

> > Colello

> >

> === message truncated ===

>

> __________________________________________________

>

March 15, 2006

April,

My husband was a diagnosed by his neurologist with LBD

in Oct. 2003. He was diagnosed with Parkinsons in

1993. Up until this time it was thought that

Parkinsons Disease Dementia, PDD and Lewy Body

Dementia LBD were one and the same. The symptoms of

both are exactly alike and they are both Lewy Body

Disease, except that LBD(Lewy Body Dementia) Starts

first with cognitive impairment and Parkinsons like

symptoms follow soon after in a year or less time and

it is a very fast progression downhill from that point

on and PDD, Parkinsons Disease Dementia, starts with

Parkinsons and several years later the cognitive

impairment begins to show up as with my husband.

At the Symposium, I found that my husband has

Parkinsons Disease Dementia, PDD, NOT Lewy Body

Dementia, LBD as he was diagnosed with. I need to

educate my husband's neurologist on this latest

update.

The researchers have found that they are two separate

entities within the Lewy Body Family Spectrum and not

one and the same as thought. The only reason they are

not one in the same is: 1.) Because of the length of

time between the two, Parkinsons and Cognitive

Impairment Combining. With one,PDD, Parkinsons comes

first and with the other, LBD, Cognitive Impairment

comes first and 2.) LBD has a much faster progression

downhill. 3.) PDD goes for several years with

Parkinsons and then the Cognitive Impairment appears,

so already they have had several years lifespan before

the downward spiral.

April, in 1993 my husband was diagnosed only with

Parkinsons Disease. With the visual eye I could not

see a problem, only my husband knew that something was

not right with him. The neurologist could already see

the masked face. I could not. Jim could smile and

looked pretty much normal to me, but his eyes also had

kind of a blank stare to them, which was very slight,

but the neurologist noticed. I did not have the

trained eye for it. He could walk and do all the

things he normally did. He was very athletic. Played

on the men's softball team, jogged 6 mi. every morning

routinely, played golf twice a week. It was in

Softball that my husband noticed he could not throw

the ball from the outfield like he normally could and

started questioning what was wrong with him. In late

1999 and 2000 he began to use a cane to walk

occasionally and in 2000 is when the cognitive

impairment started to show up. He started

hallucinating about bugs and people and began to get

delusional, he started placing things in unusual

places like; Bananas in the linen closet, Lettuce in a

drawer, Milk in a cupboard, Dishtowels in the oven,

Shoes in the refrigerator and the list goes on. I

called his neurologist with all the changes in my

husband and thought that he now had Alzheimers and

Parkinsons. I had never heard of Lewy Body. It was not

until 2003 that the neurologist diagnosed my husband

witih LBD, but now since the Symposium, I am sure that

it is PDD, because he fits that description best,

because of having Parkinsons for so long before the

Cognitive Impairment showed up. At this point in time

he is very combative, hallucinates, but less since he

is on Seroquel, Is very confused and sometimes knows

me and sometimes does not. He has Capgras Syndrome

where he believes I am Jan, but not the Jan that is

married to him. I am an imposter to him. Some days he

knows he is home and other days wants to go home and

thinks this is not his home. He is night time

incontinent and up every hour on the hour most of the

time during the wee hours of the morning, from 1AM to

around 4AM and very restless, does not know what he

wants, but he needs to be up and no matter what I do

to figure out what he needs he can not express his

needs. He gets objects confused and talks nonsense,

nothing makes sense. I just nod and agree with

whatever or else he gets frustrated that I can not

understand him. He can not recognize a toilet most of

the time and this is where he is mostly combative with

me, when I try to get him on the toilet when he says

he has to go pee. He can let me know in the daytime

when he has to pee, but getting him on the toilet is a

whole other issue if he is confused and does not

recognize the toilet or me, he hits and kicks at me.

During times like this, he will not even let me near

him to change him. If he is wet, he will strip his

clothes all off and throw the wet diaper on the floor

along with his wet clothes. He can wiggle out of them

while laying on the bed. It is almost impossible to

get close enough to him to put a clean diaper on. I

fight this battle almost every week now. I am afraid

to put him in clothes that zip up in back, so he can

not remove them or I will never get close enough to

him to get the wet clothes off of him.

He can still walk with assistance and a walker. He

shuffles and takes little steps (Festination) and gets

the frozen feet. He has strength in his arms to pull

himself out of his wheelchair by holding onto a

permanent object. He can not walk on his own without

support.

He has no interest in anything anymore. He attempts to

read the morning paper routinely, but it is usually

upside down, so I know he is not reading it, but as

long as he thinks he is, I let it go.

He is up for about 45 minute intervals and then wants

to sleep and will sleep for about 3 to 4 hours and

then gets up for about 45 min. and goes back to sleep

and it goes on like that. He can self feed, but at

times the Visuospatial thing gets in the way and then

he can not find his food and gropes around for it and

usually comes up with nothing on his fork.

Occasionally, he is too confused to self feed and

needs a helping hand to get the food in his mouth. He

can still swallow, so that is not an issue yet. With

light liquids he sometimes has a problem and I thicken

those liquids

He can do " Show Time " and appear to be lucid when

there are guests or he is on the phone, but he can not

keep it up for long.

He has what seems to be Seizures at least once or

twice a month and he has REM and Restless Legs

Syndrome.

I had to put a dead bolt lock on the door, because

since he can pull up from his wheelchair, he has tried

to escape by holding onto the door frame and pulling

himself out of the wheelchair to a stand and trying to

drag the wheelchair behind him over the doorstep to

escape out the door. He can scoot around in his

wheelchair with his feet. He can not figure out how to

unlock the dead bolt, since it needs to be unlocked

with a key and he can not figure out how to twist the

key to open the door. I have been through Hell and

back with him. You have no idea of what I had to go

through to get him to stop driving back in 2000. He

can not figure out how to dial a phone, he has no

reasoning skills, so this is where we are at today.

Why is it that you do not have a clear understanding

of if he has LBD or not, since LBD does have a very

fast progression as your FIL is having. The only thing

I would question is that you said I think two years

later PD showed up and with LBD it is typically a year

or less. Am I right that the PD showed up two years

after the cognitive impairments showed up?

I hope you can find your answers. Jan

Just a note of how quick LBD, Lewy Body Dementia can

progress. Otis Chandler, Publisher of the Los Angeles

Times, died of LBD. He was diagnosed only 7 months

before his death, which was only a few weeks ago. Last

September he appeared to be fit, besides a hurt knee,

he was lucid enough to give an interview for an hour.

Our LBD brochure gives a lifespan of 5-7 years, but it

can be less or longer.

--- aswest1021 wrote:

> Jan,

>

> I read on your profile that your husband was

> diagnosed with PD about

> 10 years prior to his diagnosis of PDD. How exactly

> does that

> differ from LBD? Sorry if I'm repeating myself for

> the millionth

> time! Is your husband able to do things for himself

> now or does he

> need a lot of care? Did he do fairly well with the

> PD before he was

> diagnosed with PDD? I still, for the life of me,

> can't seem to find

> a solid explanation for why my FIL's disease is

> progressing so

> rapidly, other than the possibility of LBD.

>

> Thanks for all your help...and prayers!

>

> April

>

> > > >

> > > > > Jan,

> > > > >

> > > > > My FIL was diagnosed with PD almost two

> years

> > > ago at

> > > > > the age of 67.

> > > > > We've all talked that before that time, he,

> of

> > > > > course, had some

> > > > > slight tremors in his hand, but he was just

> > > " off " ,

> > > > > for lack of a

> > > > > better description. Something just wasn't

> quite

> > > > > right about him.

> > > > > We started noticing signs of cognitive

> > > difficulties

> > > > > probably 6-8

> > > > > mos. prior to his diagnosis. I would say

> that 6

> > > > > months or so after

> > > > > his diagnosis, he started to take a turn for

> the

> > > > > worse. He began

> > > > > losing his mobility and had to use a cane.

> His

> > > > > memory started to

> > > > > get foggy. He would sometimes say things

> that

> > > made

> > > > > no sense. He,

> > > > > once, walked into the room rattling off

> about

> > > > > someone and what they

> > > > > had done recently. It didn't dawn on my MIL

> at

> > > > > first, but then she

> > > > > concluded that he was talking about someone

> they

> > > > > vaguely knew a long

> > > > > time ago in another state and hadn't kept in

>

=== message truncated ===

__________________________________________________

March 15, 2006

Hi April,

I might add another difference that I learned about

LBD Vs. PDD is that LBD hits all ages from early onset

in the 50s age group to older aged people. Typically,

PDD hits the older aged group of people, generally

starting in their 60s with a PD diagnosis and then

going several years until the Cognitive Impairment

hits and by that time they are in their 70s.

--- Janet Colello wrote:

> April,

> My husband was a diagnosed by his neurologist with

> LBD

> in Oct. 2003. He was diagnosed with Parkinsons in

> 1993. Up until this time it was thought that

> Parkinsons Disease Dementia, PDD and Lewy Body

> Dementia LBD were one and the same. The symptoms of

> both are exactly alike and they are both Lewy Body

> Disease, except that LBD(Lewy Body Dementia) Starts

> first with cognitive impairment and Parkinsons like

> symptoms follow soon after in a year or less time

> and

> it is a very fast progression downhill from that

> point

> on and PDD, Parkinsons Disease Dementia, starts with

> Parkinsons and several years later the cognitive

> impairment begins to show up as with my husband.

> At the Symposium, I found that my husband has

> Parkinsons Disease Dementia, PDD, NOT Lewy Body

> Dementia, LBD as he was diagnosed with. I need to

> educate my husband's neurologist on this latest

> update.

> The researchers have found that they are two

> separate

> entities within the Lewy Body Family Spectrum and

> not

> one and the same as thought. The only reason they

> are

> not one in the same is: 1.) Because of the length of

> time between the two, Parkinsons and Cognitive

> Impairment Combining. With one,PDD, Parkinsons comes

> first and with the other, LBD, Cognitive Impairment

> comes first and 2.) LBD has a much faster

> progression

> downhill. 3.) PDD goes for several years with

> Parkinsons and then the Cognitive Impairment

> appears,

> so already they have had several years lifespan

> before

> the downward spiral.

> April, in 1993 my husband was diagnosed only with

> Parkinsons Disease. With the visual eye I could not

> see a problem, only my husband knew that something

> was

> not right with him. The neurologist could already

> see

> the masked face. I could not. Jim could smile and

> looked pretty much normal to me, but his eyes also

> had

> kind of a blank stare to them, which was very

> slight,

> but the neurologist noticed. I did not have the

> trained eye for it. He could walk and do all the

> things he normally did. He was very athletic. Played

> on the men's softball team, jogged 6 mi. every

> morning

> routinely, played golf twice a week. It was in

> Softball that my husband noticed he could not throw

> the ball from the outfield like he normally could

> and

> started questioning what was wrong with him. In late

> 1999 and 2000 he began to use a cane to walk

> occasionally and in 2000 is when the cognitive

> impairment started to show up. He started

> hallucinating about bugs and people and began to get

> delusional, he started placing things in unusual

> places like; Bananas in the linen closet, Lettuce in

> a

> drawer, Milk in a cupboard, Dishtowels in the oven,

> Shoes in the refrigerator and the list goes on. I

> called his neurologist with all the changes in my

> husband and thought that he now had Alzheimers and

> Parkinsons. I had never heard of Lewy Body. It was

> not

> until 2003 that the neurologist diagnosed my husband

> witih LBD, but now since the Symposium, I am sure

> that

> it is PDD, because he fits that description best,

> because of having Parkinsons for so long before the

> Cognitive Impairment showed up. At this point in

> time

> he is very combative, hallucinates, but less since

> he

> is on Seroquel, Is very confused and sometimes knows

> me and sometimes does not. He has Capgras Syndrome

> where he believes I am Jan, but not the Jan that is

> married to him. I am an imposter to him. Some days

> he

> knows he is home and other days wants to go home and

> thinks this is not his home. He is night time

> incontinent and up every hour on the hour most of

> the

> time during the wee hours of the morning, from 1AM

> to

> around 4AM and very restless, does not know what he

> wants, but he needs to be up and no matter what I do

> to figure out what he needs he can not express his

> needs. He gets objects confused and talks nonsense,

> nothing makes sense. I just nod and agree with

> whatever or else he gets frustrated that I can not

> understand him. He can not recognize a toilet most

> of

> the time and this is where he is mostly combative

> with

> me, when I try to get him on the toilet when he says

> he has to go pee. He can let me know in the daytime

> when he has to pee, but getting him on the toilet is

> a

> whole other issue if he is confused and does not

> recognize the toilet or me, he hits and kicks at me.

> During times like this, he will not even let me near

> him to change him. If he is wet, he will strip his

> clothes all off and throw the wet diaper on the

> floor

> along with his wet clothes. He can wiggle out of

> them

> while laying on the bed. It is almost impossible to

> get close enough to him to put a clean diaper on. I

> fight this battle almost every week now. I am afraid

> to put him in clothes that zip up in back, so he can

> not remove them or I will never get close enough to

> him to get the wet clothes off of him.

> He can still walk with assistance and a walker. He

> shuffles and takes little steps (Festination) and

> gets

> the frozen feet. He has strength in his arms to pull

> himself out of his wheelchair by holding onto a

> permanent object. He can not walk on his own without

> support.

> He has no interest in anything anymore. He attempts

> to

> read the morning paper routinely, but it is usually

> upside down, so I know he is not reading it, but as

> long as he thinks he is, I let it go.

> He is up for about 45 minute intervals and then

> wants

> to sleep and will sleep for about 3 to 4 hours and

> then gets up for about 45 min. and goes back to

> sleep

> and it goes on like that. He can self feed, but at

> times the Visuospatial thing gets in the way and

> then

> he can not find his food and gropes around for it

> and

> usually comes up with nothing on his fork.

> Occasionally, he is too confused to self feed and

> needs a helping hand to get the food in his mouth.

> He

> can still swallow, so that is not an issue yet. With

> light liquids he sometimes has a problem and I

> thicken

> those liquids

> He can do " Show Time " and appear to be lucid when

> there are guests or he is on the phone, but he can

> not

> keep it up for long.

> He has what seems to be Seizures at least once or

> twice a month and he has REM and Restless Legs

> Syndrome.

> I had to put a dead bolt lock on the door, because

> since he can pull up from his wheelchair, he has

> tried

> to escape by holding onto the door frame and pulling

> himself out of the wheelchair to a stand and trying

> to

> drag the wheelchair behind him over the doorstep to

> escape out the door. He can scoot around in his

> wheelchair with his feet. He can not figure out how

> to

> unlock the dead bolt, since it needs to be unlocked

> with a key and he can not figure out how to twist

> the

> key to open the door. I have been through Hell and

> back with him. You have no idea of what I had to go

> through to get him to stop driving back in 2000. He

> can not figure out how to dial a phone, he has no

> reasoning skills, so this is where we are at today.

> Why is it that you do not have a clear understanding

> of if he has LBD or not, since LBD does have a very

> fast progression as your FIL is having. The only

> thing

> I would question is that you said I think two years

> later PD showed up and with LBD it is typically a

> year

> or less. Am I right that the PD showed up two years

> after the cognitive impairments showed up?

> I hope you can find your answers. Jan

>

> Just a note of how quick LBD, Lewy Body Dementia can

> progress. Otis Chandler, Publisher of the Los

> Angeles

> Times, died of LBD. He was diagnosed only 7 months

> before his death, which was only a few weeks ago.

> Last

> September he appeared to be fit, besides a hurt

> knee,

> he was lucid enough to give an interview for an

> hour.

> Our LBD brochure gives a lifespan of 5-7 years, but

> it

> can be less or longer.

>

=== message truncated ===

__________________________________________________

March 15, 2006

My husband was diagnosed with Alzheimer's from the

beginning and never showed anything that resembled

Parkinson's until just recently. However, your

description of your husband fits him to a T,

particularly the part about the toileting. I went

through exactly the same thing, and that was the worst

part of things. Either when he got up in the night or

if he made it through the night, the first time he

went to the bathroom, he absolutely would not sit down

on the toilet (he couldn't aim standing), and he would

curse, hit at me, try to bite, and eveything else when

I tried to get him to sit. Then, finally, anywhere

from a half-hour to longer, he would turn around, look

at the toilet, and say " Oh, there it is, why didn't

you tell me where it was? " when I had pointed it out

to him over and over. Then, the rest of the day, he

would go by himself, but did have to have help

cleaning up from BMs. His downhill slide started with

a broken shoulder last March, and the halluciations

started after the use of pain pills. During a short

hospital stay, he was given Oxycontin, and he itched

and said there were bugs running on the floor. I had

them stop it. Then, he was placed in a rehabilitation

hospital for three weeks, where unbeknownst to me, a

psychiatrist was called in. He proceeded to give him

Seroquil, Respritol, Abillify, Geodun, and possibly

some others. He then really went far out. Went in to

the hospital walking, talking, eating, etc., just had

a broken shoulder. Came out in a wheel chair, lost 16

pounds in three weeks, didn't eat well, wasn't

sleeping, had a UTI, couldn't have a BM without

laxative and/or stool softener. It took several days

of pure hell after he got back to get him halfway back

to where he was. He regained the weight, no medicine

except Aricept and Celexa for AD and FLomax for

urinary. He became increasingly argumentive over the

summer months, although he was able to help with yard

work and some household duties, but then he broke his

wrist in November, and it was really downhill from

then on. I took him to a short-term facility in mid

January to try to get him more straigtened out, but it

was a mistake, as they doubled his Aricept and Celexa,

added Namenda at 20 mg, added Depakote at 750 mg, and

Neurotin at 300 mg. He came out so drugged and with a

horrendous urinary problem, could barely walk, only

shuffled, and he legs were so weak, he would go down

all the time. Yelled, cursed, hollered, and was

generally in misery. Finally, at the end of three

days, I had to take him to ER, and from there, placed

him in the NH. His decline has been so rapid. I

believe he has LBD, even though you indicate your

husband may have PDD, mine never showed any signs of

Parkinson's until after the broken shoulder, and then

I noticed the extreme rigidity in his limbs. Couldn't

bend them for anything. That's when I started to

question the doctor about possible Parkinson's or LBD,

but he didn't think so. But, after several months and

the common symptoms of LBD, I am sure that's what it

is. He had the Lewy lean, particularly after walking

for awhile, he would lean to the left so far, I

thought he would tumble over. He also leaned over in

his chair and often tumbled off. Do they lean with

PDD? THanks for the information. Like I said, I

could have written exactly what you said about the

bathroom issues. If you have additional information

about how to tell the difference between PDD and LBD,

please let me know.

--- Janet Colello wrote:

> April,

> My husband was a diagnosed by his neurologist with

> LBD

> in Oct. 2003. He was diagnosed with Parkinsons in

> 1993. Up until this time it was thought that

> Parkinsons Disease Dementia, PDD and Lewy Body

> Dementia LBD were one and the same. The symptoms of

> both are exactly alike and they are both Lewy Body

> Disease, except that LBD(Lewy Body Dementia) Starts

> first with cognitive impairment and Parkinsons like

> symptoms follow soon after in a year or less time

> and

> it is a very fast progression downhill from that

> point

> on and PDD, Parkinsons Disease Dementia, starts with

> Parkinsons and several years later the cognitive

> impairment begins to show up as with my husband.

> At the Symposium, I found that my husband has

> Parkinsons Disease Dementia, PDD, NOT Lewy Body

> Dementia, LBD as he was diagnosed with. I need to

> educate my husband's neurologist on this latest

> update.

> The researchers have found that they are two

> separate

> entities within the Lewy Body Family Spectrum and

> not

> one and the same as thought. The only reason they

> are

> not one in the same is: 1.) Because of the length of

> time between the two, Parkinsons and Cognitive

> Impairment Combining. With one,PDD, Parkinsons comes

> first and with the other, LBD, Cognitive Impairment

> comes first and 2.) LBD has a much faster

> progression

> downhill. 3.) PDD goes for several years with

> Parkinsons and then the Cognitive Impairment

> appears,

> so already they have had several years lifespan

> before

> the downward spiral.

> April, in 1993 my husband was diagnosed only with

> Parkinsons Disease. With the visual eye I could not

> see a problem, only my husband knew that something

> was

> not right with him. The neurologist could already

> see

> the masked face. I could not. Jim could smile and

> looked pretty much normal to me, but his eyes also

> had

> kind of a blank stare to them, which was very

> slight,

> but the neurologist noticed. I did not have the

> trained eye for it. He could walk and do all the

> things he normally did. He was very athletic. Played

> on the men's softball team, jogged 6 mi. every

> morning

> routinely, played golf twice a week. It was in

> Softball that my husband noticed he could not throw

> the ball from the outfield like he normally could

> and

> started questioning what was wrong with him. In late

> 1999 and 2000 he began to use a cane to walk

> occasionally and in 2000 is when the cognitive

> impairment started to show up. He started

> hallucinating about bugs and people and began to get

> delusional, he started placing things in unusual

> places like; Bananas in the linen closet, Lettuce in

> a

> drawer, Milk in a cupboard, Dishtowels in the oven,

> Shoes in the refrigerator and the list goes on. I

> called his neurologist with all the changes in my

> husband and thought that he now had Alzheimers and

> Parkinsons. I had never heard of Lewy Body. It was

> not

> until 2003 that the neurologist diagnosed my husband

> witih LBD, but now since the Symposium, I am sure

> that

> it is PDD, because he fits that description best,

> because of having Parkinsons for so long before the

> Cognitive Impairment showed up. At this point in

> time

> he is very combative, hallucinates, but less since

> he

> is on Seroquel, Is very confused and sometimes knows

> me and sometimes does not. He has Capgras Syndrome

> where he believes I am Jan, but not the Jan that is

> married to him. I am an imposter to him. Some days

> he

> knows he is home and other days wants to go home and

> thinks this is not his home. He is night time

> incontinent and up every hour on the hour most of

> the

> time during the wee hours of the morning, from 1AM

> to

> around 4AM and very restless, does not know what he

> wants, but he needs to be up and no matter what I do

> to figure out what he needs he can not express his

> needs. He gets objects confused and talks nonsense,

> nothing makes sense. I just nod and agree with

> whatever or else he gets frustrated that I can not

> understand him. He can not recognize a toilet most

> of

> the time and this is where he is mostly combative

> with

> me, when I try to get him on the toilet when he says

> he has to go pee. He can let me know in the daytime

> when he has to pee, but getting him on the toilet is

> a

> whole other issue if he is confused and does not

> recognize the toilet or me, he hits and kicks at me.

> During times like this, he will not even let me near

> him to change him. If he is wet, he will strip his

> clothes all off and throw the wet diaper on the

> floor

> along with his wet clothes. He can wiggle out of

> them

> while laying on the bed. It is almost impossible to

> get close enough to him to put a clean diaper on. I

> fight this battle almost every week now. I am afraid

> to put him in clothes that zip up in back, so he can

> not remove them or I will never get close enough to

> him to get the wet clothes off of him.

> He can still walk with assistance and a walker. He

> shuffles and takes little steps (Festination) and

> gets

> the frozen feet. He has strength in his arms to pull

> himself out of his wheelchair by holding onto a

> permanent object. He can not walk on his own without

> support.

> He has no interest in anything anymore. He attempts

> to

> read the morning paper routinely, but it is usually

> upside down, so I know he is not reading it, but as

> long as he thinks he is, I let it go.

> He is up for about 45 minute intervals and then

> wants

> to sleep and will sleep for about 3 to 4 hours and

> then gets up for about 45 min. and goes back to

> sleep

> and it goes on like that. He can self feed, but at

> times the Visuospatial thing gets in the way and

> then

> he can not find his food and gropes around for it

> and

> usually comes up with nothing on his fork.

> Occasionally, he is too confused to self feed and

> needs a helping hand to get the food in his mouth.

> He

> can still swallow, so that is not an issue yet. With

> light liquids he sometimes has a problem and I

> thicken

> those liquids

> He can do " Show Time " and appear to be lucid when

> there are guests or he is on the phone, but he can

> not

> keep it up for long.

> He has what seems to be Seizures at least once or

> twice a month and he has REM and Restless Legs

> Syndrome.

> I had to put a dead bolt lock on the door, because

> since he can pull up from his wheelchair, he has

> tried

> to escape by holding onto the door frame and pulling

> himself out of the wheelchair to a stand and trying

> to

> drag the wheelchair behind him over the doorstep to

> escape out the door. He can scoot around in his

> wheelchair with his feet. He can not figure out how

> to

> unlock the dead bolt, since it needs to be unlocked

> with a key and he can not figure out how to twist

> the

> key to open the door. I have been through Hell and

> back with him. You have no idea of what I had to go

> through to get him to stop driving back in 2000. He

> can not figure out how to dial a phone, he has no

> reasoning skills, so this is where we are at today.

> Why is it that you do not have a clear understanding

> of if he has LBD or not, since LBD does have a very

> fast progression as your FIL is having. The only

> thing

> I would question is that you said I think two years

> later PD showed up and with LBD it is typically a

> year

> or less. Am I right that the PD showed up two years

> after the cognitive impairments showed up?

> I hope you can find your answers. Jan

>

> Just a note of how quick LBD, Lewy Body Dementia can

> progress. Otis Chandler, Publisher of the Los

> Angeles

> Times, died of LBD. He was diagnosed only 7 months

> before his death, which was only a few weeks ago.

> Last

> September he appeared to be fit, besides a hurt

> knee,

> he was lucid enough to give an interview for an

> hour.

> Our LBD brochure gives a lifespan of 5-7 years, but

> it

> can be less or longer.

>

=== message truncated ===

__________________________________________________

March 16, 2006

June

How did your husband break his shoulder? Did he have a fall?

Kath

June Christensen wrote:

My husband was diagnosed with Alzheimer's from the

beginning and never showed anything that resembled

Parkinson's until just recently. However, your

description of your husband fits him to a T,

particularly the part about the toileting. I went

through exactly the same thing, and that was the worst

part of things. Either when he got up in the night or

if he made it through the night, the first time he

went to the bathroom, he absolutely would not sit down

on the toilet (he couldn't aim standing), and he would

curse, hit at me, try to bite, and eveything else when

I tried to get him to sit. Then, finally, anywhere

from a half-hour to longer, he would turn around, look

at the toilet, and say " Oh, there it is, why didn't

you tell me where it was? " when I had pointed it out

to him over and over. Then, the rest of the day, he

would go by himself, but did have to have help

cleaning up from BMs. His downhill slide started with

a broken shoulder last March, and the halluciations

started after the use of pain pills. During a short

hospital stay, he was given Oxycontin, and he itched

and said there were bugs running on the floor. I had

them stop it. Then, he was placed in a rehabilitation

hospital for three weeks, where unbeknownst to me, a

psychiatrist was called in. He proceeded to give him

Seroquil, Respritol, Abillify, Geodun, and possibly

some others. He then really went far out. Went in to

the hospital walking, talking, eating, etc., just had

a broken shoulder. Came out in a wheel chair, lost 16

pounds in three weeks, didn't eat well, wasn't

sleeping, had a UTI, couldn't have a BM without

laxative and/or stool softener. It took several days

of pure hell after he got back to get him halfway back

to where he was. He regained the weight, no medicine

except Aricept and Celexa for AD and FLomax for

urinary. He became increasingly argumentive over the

summer months, although he was able to help with yard

work and some household duties, but then he broke his

wrist in November, and it was really downhill from

then on. I took him to a short-term facility in mid

January to try to get him more straigtened out, but it

was a mistake, as they doubled his Aricept and Celexa,

added Namenda at 20 mg, added Depakote at 750 mg, and

Neurotin at 300 mg. He came out so drugged and with a

horrendous urinary problem, could barely walk, only

shuffled, and he legs were so weak, he would go down

all the time. Yelled, cursed, hollered, and was

generally in misery. Finally, at the end of three

days, I had to take him to ER, and from there, placed

him in the NH. His decline has been so rapid. I

believe he has LBD, even though you indicate your

husband may have PDD, mine never showed any signs of

Parkinson's until after the broken shoulder, and then

I noticed the extreme rigidity in his limbs. Couldn't

bend them for anything. That's when I started to

question the doctor about possible Parkinson's or LBD,

but he didn't think so. But, after several months and

the common symptoms of LBD, I am sure that's what it

is. He had the Lewy lean, particularly after walking

for awhile, he would lean to the left so far, I

thought he would tumble over. He also leaned over in

his chair and often tumbled off. Do they lean with

PDD? THanks for the information. Like I said, I

could have written exactly what you said about the

bathroom issues. If you have additional information

about how to tell the difference between PDD and LBD,

please let me know.

--- Janet Colello wrote:

> April,

> My husband was a diagnosed by his neurologist with

> LBD

> in Oct. 2003. He was diagnosed with Parkinsons in

> 1993. Up until this time it was thought that

> Parkinsons Disease Dementia, PDD and Lewy Body

> Dementia LBD were one and the same. The symptoms of

> both are exactly alike and they are both Lewy Body

> Disease, except that LBD(Lewy Body Dementia) Starts

> first with cognitive impairment and Parkinsons like

> symptoms follow soon after in a year or less time

> and

> it is a very fast progression downhill from that

> point

> on and PDD, Parkinsons Disease Dementia, starts with

> Parkinsons and several years later the cognitive

> impairment begins to show up as with my husband.

> At the Symposium, I found that my husband has

> Parkinsons Disease Dementia, PDD, NOT Lewy Body

> Dementia, LBD as he was diagnosed with. I need to

> educate my husband's neurologist on this latest

> update.

> The researchers have found that they are two

> separate

> entities within the Lewy Body Family Spectrum and

> not

> one and the same as thought. The only reason they

> are

> not one in the same is: 1.) Because of the length of

> time between the two, Parkinsons and Cognitive

> Impairment Combining. With one,PDD, Parkinsons comes

> first and with the other, LBD, Cognitive Impairment

> comes first and 2.) LBD has a much faster

> progression

> downhill. 3.) PDD goes for several years with

> Parkinsons and then the Cognitive Impairment

> appears,

> so already they have had several years lifespan

> before

> the downward spiral.

> April, in 1993 my husband was diagnosed only with

> Parkinsons Disease. With the visual eye I could not

> see a problem, only my husband knew that something

> was

> not right with him. The neurologist could already

> see

> the masked face. I could not. Jim could smile and

> looked pretty much normal to me, but his eyes also

> had

> kind of a blank stare to them, which was very

> slight,

> but the neurologist noticed. I did not have the

> trained eye for it. He could walk and do all the

> things he normally did. He was very athletic. Played

> on the men's softball team, jogged 6 mi. every

> morning

> routinely, played golf twice a week. It was in

> Softball that my husband noticed he could not throw

> the ball from the outfield like he normally could

> and

> started questioning what was wrong with him. In late

> 1999 and 2000 he began to use a cane to walk

> occasionally and in 2000 is when the cognitive

> impairment started to show up. He started

> hallucinating about bugs and people and began to get

> delusional, he started placing things in unusual

> places like; Bananas in the linen closet, Lettuce in

> a

> drawer, Milk in a cupboard, Dishtowels in the oven,

> Shoes in the refrigerator and the list goes on. I

> called his neurologist with all the changes in my

> husband and thought that he now had Alzheimers and

> Parkinsons. I had never heard of Lewy Body. It was

> not

> until 2003 that the neurologist diagnosed my husband

> witih LBD, but now since the Symposium, I am sure

> that

> it is PDD, because he fits that description best,

> because of having Parkinsons for so long before the

> Cognitive Impairment showed up. At this point in

> time

> he is very combative, hallucinates, but less since

> he

> is on Seroquel, Is very confused and sometimes knows

> me and sometimes does not. He has Capgras Syndrome

> where he believes I am Jan, but not the Jan that is

> married to him. I am an imposter to him. Some days

> he

> knows he is home and other days wants to go home and

> thinks this is not his home. He is night time

> incontinent and up every hour on the hour most of

> the

> time during the wee hours of the morning, from 1AM

> to

> around 4AM and very restless, does not know what he

> wants, but he needs to be up and no matter what I do

> to figure out what he needs he can not express his

> needs. He gets objects confused and talks nonsense,

> nothing makes sense. I just nod and agree with

> whatever or else he gets frustrated that I can not

> understand him. He can not recognize a toilet most

> of

> the time and this is where he is mostly combative

> with

> me, when I try to get him on the toilet when he says

> he has to go pee. He can let me know in the daytime

> when he has to pee, but getting him on the toilet is

> a

> whole other issue if he is confused and does not

> recognize the toilet or me, he hits and kicks at me.

> During times like this, he will not even let me near

> him to change him. If he is wet, he will strip his

> clothes all off and throw the wet diaper on the

> floor

> along with his wet clothes. He can wiggle out of

> them

> while laying on the bed. It is almost impossible to

> get close enough to him to put a clean diaper on. I

> fight this battle almost every week now. I am afraid

> to put him in clothes that zip up in back, so he can

> not remove them or I will never get close enough to

> him to get the wet clothes off of him.

> He can still walk with assistance and a walker. He

> shuffles and takes little steps (Festination) and

> gets

> the frozen feet. He has strength in his arms to pull

> himself out of his wheelchair by holding onto a

> permanent object. He can not walk on his own without

> support.

> He has no interest in anything anymore. He attempts

> to

> read the morning paper routinely, but it is usually

> upside down, so I know he is not reading it, but as

> long as he thinks he is, I let it go.

> He is up for about 45 minute intervals and then

> wants

> to sleep and will sleep for about 3 to 4 hours and

> then gets up for about 45 min. and goes back to

> sleep

> and it goes on like that. He can self feed, but at

> times the Visuospatial thing gets in the way and

> then

> he can not find his food and gropes around for it

> and

> usually comes up with nothing on his fork.

> Occasionally, he is too confused to self feed and

> needs a helping hand to get the food in his mouth.

> He

> can still swallow, so that is not an issue yet. With

> light liquids he sometimes has a problem and I

> thicken

> those liquids

> He can do " Show Time " and appear to be lucid when

> there are guests or he is on the phone, but he can

> not

> keep it up for long.

> He has what seems to be Seizures at least once or

> twice a month and he has REM and Restless Legs

> Syndrome.

> I had to put a dead bolt lock on the door, because

> since he can pull up from his wheelchair, he has

> tried

> to escape by holding onto the door frame and pulling

> himself out of the wheelchair to a stand and trying

> to

> drag the wheelchair behind him over the doorstep to

> escape out the door. He can scoot around in his

> wheelchair with his feet. He can not figure out how

> to

> unlock the dead bolt, since it needs to be unlocked

> with a key and he can not figure out how to twist

> the

> key to open the door. I have been through Hell and

> back with him. You have no idea of what I had to go

> through to get him to stop driving back in 2000. He

> can not figure out how to dial a phone, he has no

> reasoning skills, so this is where we are at today.

> Why is it that you do not have a clear understanding

> of if he has LBD or not, since LBD does have a very

> fast progression as your FIL is having. The only

> thing

> I would question is that you said I think two years

> later PD showed up and with LBD it is typically a

> year

> or less. Am I right that the PD showed up two years

> after the cognitive impairments showed up?

> I hope you can find your answers. Jan

>

> Just a note of how quick LBD, Lewy Body Dementia can

> progress. Otis Chandler, Publisher of the Los

> Angeles

> Times, died of LBD. He was diagnosed only 7 months

> before his death, which was only a few weeks ago.

> Last

> September he appeared to be fit, besides a hurt

> knee,

> he was lucid enough to give an interview for an

> hour.

> Our LBD brochure gives a lifespan of 5-7 years, but

> it

> can be less or longer.

>

=== message truncated ===

__________________________________________________

March 16, 2006

Jan,

Thank you so very much for giving such an open, honest, and

insightful answer to my question. God Bless You for all that you're

having to go through with your husband. I am not the caregiver of my

FIL, so you helped me get a better idea of some of the issues my MIL

might be dealing with on a daily basis.

From what you've described, I have to believe that my FIL has LBD.

I say this because of the fast progression and the fact that before

his PD symptoms really started showing up, he was beginning to show

signs of cognitive difficulties. Now, as I think back, he had a

very slight tremor in his hand about a year before he was diagnosed

with PD. The only time we really noticed it was when he reach for

something and there would be a slight tremble. I would say that 6-8

months before his diagnosis, as I stated previously, he was just not

his usual self. He became very short-tempered and was beginning to

show signs of short-term memory loss. By the time of his diagnosis,

he had exhibited some episodes of being a bit unsteady on his feet;

no falls, just a little wobbly. His mental and physical well-being

didn't start taking a nose dive until about a year into his

diagnosis; he was diagnosed in 2004. At the beginning, his tremors

increased and he began to get very slow in movement and in eating.

It would take him a solid hour or more to eat a small breakfast.

Still, in the early part of his diagnosis, he was able to carry on a

lucid conversation and could get around fairly well on his own, just

at a slower pace.

In this past year, though, the changes have been dramatic, to say

the least. He can no longer balance his checkbook, find someones

phone number in a phone book, and is very forgetful. He sits around

most of the time in a stupor or sleeps. He doesn't socialize much

and fatigues very easily. He has become totally dependant on his

wife for everything from showering, dressing, using the toilet, you

name it. Apparently, he had gone through a bout of incontinence,

but is now having difficulty urinating, at all. He went to see a

urologist yesterday and they found some scar tissue in his ureathra

from prostate surgery he had years ago. They are going to " roto-

rooter " it out in a couple of weeks. I worry about him undergoing

the procedure because he'll be put out with anesthesia. Aren't there

risks associated with that for someone who has LBD?

So, I guess to answer your question, my FIL has had PD symptoms from

the onset of his diagnosis two years ago, but we all noticed prior

to that that he was mentally " off " and had a slight tremor in his

hand. Though he does have a lot of physical problems, he has a lot

of cognitive problems, as well. He seems to get worse day by day.

As I wrote earlier, he has an appointment on Monday with his MDS and

I know my MIL is going to express her desire to seek out a second

opinion. In fact, they want to go to a neurologist here at Emory

University by the name of Dr. Mahlon Delong. Anyone familiar with

him? He's supposed to be one of the leading experts in PD and is

Muhammed Ali's personal physician. I think they've reached the point

where a second opinion would be highly recommended, so we'll see.

From all I've read and researched, PD simply does not, generally,

progress rapidly in terms of declining physical and mental status.

The only thing I can conclude is it has to be LBD.

April

> > > > >

> > > > > > Jan,

> > > > > >

> > > > > > My FIL was diagnosed with PD almost two

> > years

> > > > ago at

> > > > > > the age of 67.

> > > > > > We've all talked that before that time, he,

> > of

> > > > > > course, had some

> > > > > > slight tremors in his hand, but he was just

> > > > " off " ,

> > > > > > for lack of a

> > > > > > better description. Something just wasn't

> > quite

> > > > > > right about him.

> > > > > > We started noticing signs of cognitive

> > > > difficulties

> > > > > > probably 6-8

> > > > > > mos. prior to his diagnosis. I would say

> > that 6

> > > > > > months or so after

> > > > > > his diagnosis, he started to take a turn for

> > the

> > > > > > worse. He began

> > > > > > losing his mobility and had to use a cane.

> > His

> > > > > > memory started to

> > > > > > get foggy. He would sometimes say things

> > that

> > > > made

> > > > > > no sense. He,

> > > > > > once, walked into the room rattling off

> > about

> > > > > > someone and what they

> > > > > > had done recently. It didn't dawn on my MIL

> > at

> > > > > > first, but then she

> > > > > > concluded that he was talking about someone

> > they

> > > > > > vaguely knew a long

> > > > > > time ago in another state and hadn't kept in

> >

> === message truncated ===

>

> __________________________________________________

>

March 16, 2006

We were visiting our daughter in NC. Prior to

leaving, he had falled twice at home (wonder now about

LBD since that is part of the symptoms); then he fell

getting out of the shower at the motel on the way

there, but there was water involved. The following

night, he was taking a shower at my daughter's house,

and I watched him the whole time. He got out, on a

nonslip rug, and was drying himeself. I went into the

bedroom to get him some clothing, and I think he

lifted his leg to dry it and fell backward into the

bathtub, hitting the outside of the tub with his left

shoulder. My son-in-law and I together could not

budge him, because we could not lift him on the

closest side to us, as that was the injured one. THe

medics had a hard time getting him out, too.

--- STEVE & KATHY WARD wrote:

> June

> How did your husband break his shoulder? Did he

> have a fall?

>

> Kath

>

> June Christensen wrote:

> My husband was diagnosed with Alzheimer's from the

> beginning and never showed anything that resembled

> Parkinson's until just recently. However, your

> description of your husband fits him to a T,

> particularly the part about the toileting. I went

> through exactly the same thing, and that was the

> worst

> part of things. Either when he got up in the night

> or

> if he made it through the night, the first time he

> went to the bathroom, he absolutely would not sit

> down

> on the toilet (he couldn't aim standing), and he

> would

> curse, hit at me, try to bite, and eveything else

> when

> I tried to get him to sit. Then, finally, anywhere

> from a half-hour to longer, he would turn around,

> look

> at the toilet, and say " Oh, there it is, why didn't

> you tell me where it was? " when I had pointed it out

> to him over and over. Then, the rest of the day, he

> would go by himself, but did have to have help

> cleaning up from BMs. His downhill slide started

> with

> a broken shoulder last March, and the halluciations

> started after the use of pain pills. During a short

> hospital stay, he was given Oxycontin, and he itched

> and said there were bugs running on the floor. I had

> them stop it. Then, he was placed in a

> rehabilitation

> hospital for three weeks, where unbeknownst to me, a

> psychiatrist was called in. He proceeded to give him

> Seroquil, Respritol, Abillify, Geodun, and possibly

> some others. He then really went far out. Went in to

> the hospital walking, talking, eating, etc., just

> had

> a broken shoulder. Came out in a wheel chair, lost

> 16

> pounds in three weeks, didn't eat well, wasn't

> sleeping, had a UTI, couldn't have a BM without

> laxative and/or stool softener. It took several days

> of pure hell after he got back to get him halfway

> back

> to where he was. He regained the weight, no medicine

> except Aricept and Celexa for AD and FLomax for

> urinary. He became increasingly argumentive over the

> summer months, although he was able to help with

> yard

> work and some household duties, but then he broke

> his

> wrist in November, and it was really downhill from

> then on. I took him to a short-term facility in mid

> January to try to get him more straigtened out, but

> it

> was a mistake, as they doubled his Aricept and

> Celexa,

> added Namenda at 20 mg, added Depakote at 750 mg,

> and

> Neurotin at 300 mg. He came out so drugged and with

> a

> horrendous urinary problem, could barely walk, only

> shuffled, and he legs were so weak, he would go down

> all the time. Yelled, cursed, hollered, and was

> generally in misery. Finally, at the end of three

> days, I had to take him to ER, and from there,

> placed

> him in the NH. His decline has been so rapid. I

> believe he has LBD, even though you indicate your

> husband may have PDD, mine never showed any signs of

> Parkinson's until after the broken shoulder, and

> then

> I noticed the extreme rigidity in his limbs.

> Couldn't

> bend them for anything. That's when I started to

> question the doctor about possible Parkinson's or

> LBD,

> but he didn't think so. But, after several months

> and

> the common symptoms of LBD, I am sure that's what it

> is. He had the Lewy lean, particularly after walking

> for awhile, he would lean to the left so far, I

> thought he would tumble over. He also leaned over in

> his chair and often tumbled off. Do they lean with

> PDD? THanks for the information. Like I said, I

> could have written exactly what you said about the

> bathroom issues. If you have additional information

> about how to tell the difference between PDD and

> LBD,

> please let me know.

>

> --- Janet Colello wrote:

>

> > April,

> > My husband was a diagnosed by his neurologist with

> > LBD

> > in Oct. 2003. He was diagnosed with Parkinsons in

> > 1993. Up until this time it was thought that

> > Parkinsons Disease Dementia, PDD and Lewy Body

> > Dementia LBD were one and the same. The symptoms

> of

> > both are exactly alike and they are both Lewy Body

> > Disease, except that LBD(Lewy Body Dementia)

> Starts

> > first with cognitive impairment and Parkinsons

> like

> > symptoms follow soon after in a year or less time

> > and

> > it is a very fast progression downhill from that

> > point

> > on and PDD, Parkinsons Disease Dementia, starts

> with

> > Parkinsons and several years later the cognitive

> > impairment begins to show up as with my husband.

> > At the Symposium, I found that my husband has

> > Parkinsons Disease Dementia, PDD, NOT Lewy Body

> > Dementia, LBD as he was diagnosed with. I need to

> > educate my husband's neurologist on this latest

> > update.

> > The researchers have found that they are two

> > separate

> > entities within the Lewy Body Family Spectrum and

> > not

> > one and the same as thought. The only reason they

> > are

> > not one in the same is: 1.) Because of the length

> of

> > time between the two, Parkinsons and Cognitive

> > Impairment Combining. With one,PDD, Parkinsons

> comes

> > first and with the other, LBD, Cognitive

> Impairment

> > comes first and 2.) LBD has a much faster

> > progression

> > downhill. 3.) PDD goes for several years with

> > Parkinsons and then the Cognitive Impairment

> > appears,

> > so already they have had several years lifespan

> > before

> > the downward spiral.

> > April, in 1993 my husband was diagnosed only with

> > Parkinsons Disease. With the visual eye I could

> not

> > see a problem, only my husband knew that something

> > was

> > not right with him. The neurologist could already

> > see

> > the masked face. I could not. Jim could smile and

> > looked pretty much normal to me, but his eyes also

> > had

> > kind of a blank stare to them, which was very

> > slight,

> > but the neurologist noticed. I did not have the

> > trained eye for it. He could walk and do all the

> > things he normally did. He was very athletic.

> Played

> > on the men's softball team, jogged 6 mi. every

> > morning

> > routinely, played golf twice a week. It was in

> > Softball that my husband noticed he could not

> throw

> > the ball from the outfield like he normally could

> > and

> > started questioning what was wrong with him. In

> late

> > 1999 and 2000 he began to use a cane to walk

> > occasionally and in 2000 is when the cognitive

> > impairment started to show up. He started

> > hallucinating about bugs and people and began to

> get

> > delusional, he started placing things in unusual

> > places like; Bananas in the linen closet, Lettuce

> in

> > a

> > drawer, Milk in a cupboard, Dishtowels in the

> oven,

> > Shoes in the refrigerator and the list goes on. I

> > called his neurologist with all the changes in my

> > husband and thought that he now had Alzheimers and

> > Parkinsons. I had never heard of Lewy Body. It was

> > not

> > until 2003 that the neurologist diagnosed my

> husband

> > witih LBD, but now since the Symposium, I am sure

> > that

> > it is PDD, because he fits that description best,

> > because of having Parkinsons for so long before

> the

> > Cognitive Impairment showed up. At this point in

> > time

> > he is very combative, hallucinates, but less since

> > he

> > is on Seroquel, Is very confused and sometimes

> knows

>

=== message truncated ===

__________________________________________________

Sign In

Re: Just Needing to Vent A Little/April

Recommended Posts

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Guest guest

Join the conversation

Activity