Re: Just joined the group today/

[Guest guest]

Hi ,

I am glad you have found this support group for LBD.

You will find invaluable information here, that you

can not find anywhere else, since LBD is not widely

known yet in the medical communities.

The 5-7 years life duration of LBD is only a figure.

Some of us are asking when do you begin counting the

years. From the start when Parkinson or dementia was

first diagnosed or when the two meet together and from

that point on begin the count. My husband was

diagnosed with Parkinsons in 2003, but the dementia

showed with a vengeance around 2000, so do I begin

from that point counting years. Many were diagnosed

with the dementia first and the parkinsons like

symptoms showed up later. There are no stages in LBD,

it is all over the map with no pattern to follow. I am

very curious, because there is also PDD Parkinsons

Disease Dementia, which has the exact same symptoms as

LBD. There is a controversy with doctors as to if they

are one and the same or two different dementia

diseases. I have read where If Parkinsons began first

and the duration of the disease was longer then it is

most likely PDD and I have read of other small

differences, but the symptoms remain the same. There

is a Symposium in February of researchers and LBD

caregivers getting together to try and settle this

difference once and for all. I am very curious as to

what they will find out in the differences between PDD

and LBD, if any. You can find out about the Symposium

in the " Thistle " The LBD Assoc. Newsletter. You can

find the newsletter at:

http://www.lewybodydementia.org

Many of us here have been on this road for a long

stretch and others have had the very short duration.

We have found that we all experience same behaviors

and symptoms, but not at the same place in the

disease. One thing at the end of this dreadful disease

all face swallowing issues and being bedridden. The

eyes being closed is very common here.

My husband is still able to walk with assistance. He

is very combative, especially in toileting details. He

is night time incontinent, but lately gets up to go to

the bathroom, which I have to take him and then he

argues about sitting on the toilet and does not

understand he must sit on the toilet and wants to wet

the floor and himself standing up. He sometimes needs

help in feeding, because it is an LBD Symptome to have

lack of spatial and depth awareness and he can not

find the food on his plate at times. A runny nose is

also common. He has started some issues with light

liquids and swallowing, so they have to be thickened.

He can still communicate somewhat. I can understand

him, but most people can't, if they have not been

around him often. He hallucinates, but not as much

since Seroquel was added. He gets paranoid, delusional

too. He thinks I steal his money, have affairs and

things of that nature, but I have been working on

those delusional behaviors for quite awhile, so they

are not happening as often as they were. He is still

functioning fairly well. He sleeps alot, but does get

up for 1 or 2 hours at a stretch, before going down

again for a nap, that lasts anywhere from 2 to 4 or 5

hours. I am thankful, he still has a good appetite, is

not bedridden, recognizes me most of the time, can

transfer himself from chair to standing.

One of the things most needed to watch is other

complications can set in that can be fatal before the

end of LBD even is a subject. Things like falling and

breaking a hip, pneumonia, Urinary Tract Infections

and things of that nature.

Welcome , I am glad you are here, but sad for

the reasons you had to find us. Jan Colello

--- stimtimminss wrote:

> I know the progress of this dementia is supposed to

> be 5-7 years, but my mother first

> presented with " Parkinsons " about 12 years ago! It

> has been a slow and arduous journey

> to travel with her, now 91 in a nursing home,

> needing total care, unable to even reposition

> herself in her wheelchair, being spoonfed pureed

> foods. She has lost much of her past, to

> be reconfigured with imagined happenings in many

> cases, or just complete erasure. She

> spends most of her time with eyes closed as opening

> them seems as difficult to achieve as

> word retreival. Is this normal? One nurse

> suggested to me that most of their residents

> with LBD live through closed eyes as they regress.

> She tends to know me when I am there,

> despite no eye contact, at times I'm not so sure.

> I have supported, advocated, done for her mainly

> singly throughout, but now am so

> relieved to find this group. I decided to search

> for current information on LBD and found

> you!

> To start, a couple more questions. Can anyone give

> me insight as to where this journey

> will lead us from here? I think I have an idea but

> would like a bit more first hand

> information to be able to brace myself for what is

> coming. Also, would there be a support

> group close to Oakville Ont? I am burning out and

> could use some shoulders who are/

> have been there as well.

> Tears as I reread this.

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi Jan,

I must thank you for the obvious time and caring you put into sharing with me.

You add

some interesting facts to consider.

I have to wonder if Mom could in fact have PDD instead of LBD when her

neurologist told

her years ago that she did not have Parkinsons as first diagnosed, that it

seemed to be

secondary to something else, and her current nursing home doctor claimed she did

not

have full blown Parkinsons on admission 3 years ago? She also suffers

hallucinations,

which I did not find mentioned on the PDD websites I entered. Whichever the

diagnosis,

we know the end result remains the same.

I am sorry for what you are going through with your husband. I hope you are

getting

some relief for you and admire your devotion to caring for him.

Mom also is combative with staff as they try to attend to her daily needs,

reaching out to

pinch them, with eyes closed, succeeding in grabbing her own arm frequently,

tearing the

skin and causing bruising.

Interestingly, I noticed a runny nose about 4 months ago, which has not gone

away. The

drooling has been there much longer, spatial awareness a problem while she was

still

trying to feed herself up to 10 months ago.

She is certainly in a place she never wanted to be, with no quality of life.

This lingering is

so difficult to witness.

I will look at the Thistle and follow the symposium outcome with interest.

It was good to meet you Jan.

> Hi ,

> I am glad you have found this support group for LBD.

> You will find invaluable information here, that you

> can not find anywhere else, since LBD is not widely

> known yet in the medical communities.

> The 5-7 years life duration of LBD is only a figure.

> Some of us are asking when do you begin counting the

> years. From the start when Parkinson or dementia was

> first diagnosed or when the two meet together and from

> that point on begin the count. My husband was

> diagnosed with Parkinsons in 2003, but the dementia

> showed with a vengeance around 2000, so do I begin

> from that point counting years. Many were diagnosed

> with the dementia first and the parkinsons like

> symptoms showed up later. There are no stages in LBD,

> it is all over the map with no pattern to follow. I am

> very curious, because there is also PDD Parkinsons

> Disease Dementia, which has the exact same symptoms as

> LBD. There is a controversy with doctors as to if they

> are one and the same or two different dementia

> diseases. I have read where If Parkinsons began first

> and the duration of the disease was longer then it is

> most likely PDD and I have read of other small

> differences, but the symptoms remain the same. There

> is a Symposium in February of researchers and LBD

> caregivers getting together to try and settle this

> difference once and for all. I am very curious as to

> what they will find out in the differences between PDD

> and LBD, if any. You can find out about the Symposium

> in the " Thistle " The LBD Assoc. Newsletter. You can

> find the newsletter at:

> http://www.lewybodydementia.org

> Many of us here have been on this road for a long

> stretch and others have had the very short duration.

> We have found that we all experience same behaviors

> and symptoms, but not at the same place in the

> disease. One thing at the end of this dreadful disease

> all face swallowing issues and being bedridden. The

> eyes being closed is very common here.

> My husband is still able to walk with assistance. He

> is very combative, especially in toileting details. He

> is night time incontinent, but lately gets up to go to

> the bathroom, which I have to take him and then he

> argues about sitting on the toilet and does not

> understand he must sit on the toilet and wants to wet

> the floor and himself standing up. He sometimes needs

> help in feeding, because it is an LBD Symptome to have

> lack of spatial and depth awareness and he can not

> find the food on his plate at times. A runny nose is

> also common. He has started some issues with light

> liquids and swallowing, so they have to be thickened.

> He can still communicate somewhat. I can understand

> him, but most people can't, if they have not been

> around him often. He hallucinates, but not as much

> since Seroquel was added. He gets paranoid, delusional

> too. He thinks I steal his money, have affairs and

> things of that nature, but I have been working on

> those delusional behaviors for quite awhile, so they

> are not happening as often as they were. He is still

> functioning fairly well. He sleeps alot, but does get

> up for 1 or 2 hours at a stretch, before going down

> again for a nap, that lasts anywhere from 2 to 4 or 5

> hours. I am thankful, he still has a good appetite, is

> not bedridden, recognizes me most of the time, can

> transfer himself from chair to standing.

> One of the things most needed to watch is other

> complications can set in that can be fatal before the

> end of LBD even is a subject. Things like falling and

> breaking a hip, pneumonia, Urinary Tract Infections

> and things of that nature.

> Welcome , I am glad you are here, but sad for

> the reasons you had to find us. Jan Colello

>

>

>

>

> --- stimtimminss <stim@c...> wrote:

>

> > I know the progress of this dementia is supposed to

> > be 5-7 years, but my mother first

> > presented with " Parkinsons " about 12 years ago! It

> > has been a slow and arduous journey

> > to travel with her, now 91 in a nursing home,

> > needing total care, unable to even reposition

> > herself in her wheelchair, being spoonfed pureed

> > foods. She has lost much of her past, to

> > be reconfigured with imagined happenings in many

> > cases, or just complete erasure. She

> > spends most of her time with eyes closed as opening

> > them seems as difficult to achieve as

> > word retreival. Is this normal? One nurse

> > suggested to me that most of their residents

> > with LBD live through closed eyes as they regress.

> > She tends to know me when I am there,

> > despite no eye contact, at times I'm not so sure.

> > I have supported, advocated, done for her mainly

> > singly throughout, but now am so

> > relieved to find this group. I decided to search

> > for current information on LBD and found

> > you!

> > To start, a couple more questions. Can anyone give

> > me insight as to where this journey

> > will lead us from here? I think I have an idea but

> > would like a bit more first hand

> > information to be able to brace myself for what is

> > coming. Also, would there be a support

> > group close to Oakville Ont? I am burning out and

> > could use some shoulders who are/

> > have been there as well.

> > Tears as I reread this.

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi ,

Oh my goodness, I stated that my husband was diagnosed

with Parkinsons in 2003. It was in 1993 he was dx

w/parkinsons. The dementia did not show up full blown

until 2000 and in 2003 he was diagnosed with LBD by

his neurologist. LIke you stated, his neurologist was

very skeptical about dx him with Parkinsons, since it

was a Parkinsonism, not a true Parkinsons. It is

mostly my husband's gait that has a Parkinsons

similarity.

I became really curious about the LBD vs. PDD when I

called the Veteran's Office in our area that has a

research program in Dementias and I explained that My

husband was dx w/LBD and I would be interested to have

him in their research program and the person I spoke

to kept insisting that there was no LBD and that he

had PDD. I explained all my husband's symptoms and she

said that it was obviously PDD. I began explaining

that LBD was not widely known in the medical

communities and that I would send them a brochure on

it. She got very haughty about it and said she had

heard of LBD, but that it is PDD. So here is where the

controversy is in the medical communities, many do not

believe that LBD exists and that it is PDD. It will be

wonderful to have the criteria on the two and then

maybe doctors and researchers will begin to believe

there is a difference and it won't be such a struggle

with doctors to have the proper care for LBD. As of

now, they believe what they want to believe.

One of the things that I have read on one of the sites

in differences, is that it stated dementia usually

shows up first with LBD and the Parkinsonism shows up

soon after, this would not fit my husband as the

Parkinsons showed up years before the dementia and

hallucinations, so this is what has me thinking it

could be PDD. My husband's neurologist is as confused

as I am on this, so another reason I am so interested

in the outcome of this criteria. I would love to be a

caregiver that participates in this Conference and I

am going to attempt to be there. Jan

--- stimtimminss wrote:

> Hi Jan,

> I must thank you for the obvious time and caring you

> put into sharing with me. You add

> some interesting facts to consider.

> I have to wonder if Mom could in fact have PDD

> instead of LBD when her neurologist told

> her years ago that she did not have Parkinsons as

> first diagnosed, that it seemed to be

> secondary to something else, and her current nursing

> home doctor claimed she did not

> have full blown Parkinsons on admission 3 years ago?

> She also suffers hallucinations,

> which I did not find mentioned on the PDD websites I

> entered. Whichever the diagnosis,

> we know the end result remains the same.

> I am sorry for what you are going through with your

> husband. I hope you are getting

> some relief for you and admire your devotion to

> caring for him.

> Mom also is combative with staff as they try to

> attend to her daily needs, reaching out to

> pinch them, with eyes closed, succeeding in grabbing

> her own arm frequently, tearing the

> skin and causing bruising.

> Interestingly, I noticed a runny nose about 4 months

> ago, which has not gone away. The

> drooling has been there much longer, spatial

> awareness a problem while she was still

> trying to feed herself up to 10 months ago.

> She is certainly in a place she never wanted to be,

> with no quality of life. This lingering is

> so difficult to witness.

> I will look at the Thistle and follow the symposium

> outcome with interest.

> It was good to meet you Jan.

>

>

>

>

> > Hi ,

> > I am glad you have found this support group for

> LBD.

> > You will find invaluable information here, that

> you

> > can not find anywhere else, since LBD is not

> widely

> > known yet in the medical communities.

> > The 5-7 years life duration of LBD is only a

> figure.

> > Some of us are asking when do you begin counting

> the

> > years. From the start when Parkinson or dementia

> was

> > first diagnosed or when the two meet together and

> from

> > that point on begin the count. My husband was

> > diagnosed with Parkinsons in 2003, but the

> dementia

> > showed with a vengeance around 2000, so do I begin

> > from that point counting years. Many were

> diagnosed

> > with the dementia first and the parkinsons like

> > symptoms showed up later. There are no stages in

> LBD,

> > it is all over the map with no pattern to follow.

> I am

> > very curious, because there is also PDD Parkinsons

> > Disease Dementia, which has the exact same

> symptoms as

> > LBD. There is a controversy with doctors as to if

> they

> > are one and the same or two different dementia

> > diseases. I have read where If Parkinsons began

> first

> > and the duration of the disease was longer then it

> is

> > most likely PDD and I have read of other small

> > differences, but the symptoms remain the same.

> There

> > is a Symposium in February of researchers and LBD

> > caregivers getting together to try and settle this

> > difference once and for all. I am very curious as

> to

> > what they will find out in the differences between

> PDD

> > and LBD, if any. You can find out about the

> Symposium

> > in the " Thistle " The LBD Assoc. Newsletter. You

> can

> > find the newsletter at:

> > http://www.lewybodydementia.org

> > Many of us here have been on this road for a long

> > stretch and others have had the very short

> duration.

> > We have found that we all experience same

> behaviors

> > and symptoms, but not at the same place in the

> > disease. One thing at the end of this dreadful

> disease

> > all face swallowing issues and being bedridden.

> The

> > eyes being closed is very common here.

> > My husband is still able to walk with assistance.

> He

> > is very combative, especially in toileting

> details. He

> > is night time incontinent, but lately gets up to

> go to

> > the bathroom, which I have to take him and then he

> > argues about sitting on the toilet and does not

> > understand he must sit on the toilet and wants to

> wet

> > the floor and himself standing up. He sometimes

> needs

> > help in feeding, because it is an LBD Symptome to

> have

> > lack of spatial and depth awareness and he can not

> > find the food on his plate at times. A runny nose

> is

> > also common. He has started some issues with light

> > liquids and swallowing, so they have to be

> thickened.

> > He can still communicate somewhat. I can

> understand

> > him, but most people can't, if they have not been

> > around him often. He hallucinates, but not as much

> > since Seroquel was added. He gets paranoid,

> delusional

> > too. He thinks I steal his money, have affairs and

> > things of that nature, but I have been working on

> > those delusional behaviors for quite awhile, so

> they

> > are not happening as often as they were. He is

> still

> > functioning fairly well. He sleeps alot, but does

> get

> > up for 1 or 2 hours at a stretch, before going

> down

> > again for a nap, that lasts anywhere from 2 to 4

> or 5

> > hours. I am thankful, he still has a good

> appetite, is

> > not bedridden, recognizes me most of the time, can

> > transfer himself from chair to standing.

> > One of the things most needed to watch is other

> > complications can set in that can be fatal before

> the

> > end of LBD even is a subject. Things like falling

> and

> > breaking a hip, pneumonia, Urinary Tract

> Infections

> > and things of that nature.

> > Welcome , I am glad you are here, but sad

> for

> > the reasons you had to find us. Jan Colello

> >

> >

> >

> >

> > --- stimtimminss <stim@c...> wrote:

> >

> > > I know the progress of this dementia is supposed

> to

> > > be 5-7 years, but my mother first

> > > presented with " Parkinsons " about 12 years ago!

> It

> > > has been a slow and arduous journey

> > > to travel with her, now 91 in a nursing home,

> > > needing total care, unable to even reposition

> > > herself in her wheelchair, being spoonfed pureed

> > > foods. She has lost much of her past, to

> > > be reconfigured with imagined happenings in many

> > > cases, or just complete erasure. She

> > > spends most of her time with eyes closed as

> opening

> > > them seems as difficult to achieve as

> > > word retreival. Is this normal? One nurse

> > > suggested to me that most of their residents

> > > with LBD live through closed eyes as they

> regress.

> > > She tends to know me when I am there,

> > > despite no eye contact, at times I'm not so

> sure.

> > > I have supported, advocated, done for her mainly

> > > singly throughout, but now am so

> > > relieved to find this group. I decided to

> search

> > > for current information on LBD and found

> > > you!

> > > To start, a couple more questions. Can anyone

> give

> > > me insight as to where this journey

> > > will lead us from here? I think I have an idea

> but

> > > would like a bit more first hand

> > > information to be able to brace myself for what

> is

> > > coming. Also, would there be a support

> > > group close to Oakville Ont? I am burning out

> and

> > > could use some shoulders who are/

>

=== message truncated ===

__________________________________________________

[Guest guest]

Hi again Jan,

Now I understand your response to my initial sending about Mom's timeline! She

also was

diagnosed in l993, with Parkinsons, age 79. She continued to live alone until

the fall of

2000 when I could see that the growing confusion, loss of organizational skills,

rational

thought, ability to manage her accounting as well as continued falls were making

her

living alone unsafe and increasingly difficult. During that time she had fought

cancer, had

surgery for cornea, so I had considered that extra stress as a reason for

cognitive loss.

She drove her car until we persuaded her to stop driving 5 years ago!

We placed her into a retirement home situation, where she coped well for a year,

walking

with a walker, then exactly 4 years ago she crashed, unable to walk anymore,

hallucinating, much more affected cognitively, swallowing an issue. It happened

overnight, had to be admitted to hospital and from there to a nursing home

setting in a

wheelchair. It was 3 years ago we got the diagnosis of LBD. Until then I had

no idea what

was going on with her.

Our timelines coincide and now I also understand your knowledge of PDD vs LBD.

I admire

your interest in participating in the conference!

I cannot imagine caregiving at home for the length of time you have. You must

be an

amazing woman.

> > >

> > > > I know the progress of this dementia is supposed

> > to

> > > > be 5-7 years, but my mother first

> > > > presented with " Parkinsons " about 12 years ago!

> > It

> > > > has been a slow and arduous journey

> > > > to travel with her, now 91 in a nursing home,

> > > > needing total care, unable to even reposition

> > > > herself in her wheelchair, being spoonfed pureed

> > > > foods. She has lost much of her past, to

> > > > be reconfigured with imagined happenings in many

> > > > cases, or just complete erasure. She

> > > > spends most of her time with eyes closed as

> > opening

> > > > them seems as difficult to achieve as

> > > > word retreival. Is this normal? One nurse

> > > > suggested to me that most of their residents

> > > > with LBD live through closed eyes as they

> > regress.

> > > > She tends to know me when I am there,

> > > > despite no eye contact, at times I'm not so

> > sure.

> > > > I have supported, advocated, done for her mainly

> > > > singly throughout, but now am so

> > > > relieved to find this group. I decided to

> > search

> > > > for current information on LBD and found

> > > > you!

> > > > To start, a couple more questions. Can anyone

> > give

> > > > me insight as to where this journey

> > > > will lead us from here? I think I have an idea

> > but

> > > > would like a bit more first hand

> > > > information to be able to brace myself for what

> > is

> > > > coming. Also, would there be a support

> > > > group close to Oakville Ont? I am burning out

> > and

> > > > could use some shoulders who are/

> >

> === message truncated ===

>

>

> __________________________________________________

>

[Guest guest]

Hello Jan and ,

That makes three that were diagnosed in 1993 with Parkinson's. My Uncle was

also dx with Parks in '93, at age 70 and started having hallucinations when he

was still in his apartment back in 2000, and I think it was even before that.

He had a terrible fall in mid 2003 and that's when he came to live with me.

I told the Doctor's that I thought he had something else that I found on the

Internet, LBD. They agreed and re-diagnosed him.

He hallucinates more now, still walks by himself (barely sometimes) but has

to use the walker...except for Showtime when he manages to walk without it

(don't ask me how!) He chokes on his food and coughs at every meal, and has

days

where he cannot and doesn't want to get out of bed. I call them TIA days

because he can't move, just opens his eyes a bit and nods yes or no and sleeps

the

whole day, then gets up and asks, " What's for dinner? " . He has done this

several times now and I thought he would not make it through the day. It's very

hard on emotions.

He has gradually given up control of things, meds, money, banking, phone. He

qualified for Hospice and they are helping out with bathing two times a week

and the nurse checks on him two other days during the week. He has lost about

20 plus pounds over the past few months, has had esophogus clearing twice and

now refuses to have another clearing (amazing as it seems...he is managing to

" swallow " better now that he knows this!!! ? More Showtime?).

Confusion has set in and he can't remember when to take his pills so I fill

his pill box and remind him throughout the day. At night he rings us upstairs

several times because he thinks he is slipping out of bed or someone is in the

room, or the clock fell off the night stand and he wants me to pick up the

glass so he won't step on it. During the day he mostly sleeps in his chair with

his eyes slightly open and his mouth open, and has no desire to go anywhere

or have anyone over. Lately, he has stated that he is so " sleepy " all the

time....Hospice said that is one of the signs that he is shutting down.

Very strange and interesting disease. One never knows.

Good luck to all of us along this journey, and here's wishing everyone a

truly Blessed Holiday Season! Peace to all, Stevie

* * * * * * * * * * *

Hi again Jan,

Now I understand your response to my initial sending about Mom's timeline!

She also was

diagnosed in l993, with Parkinsons, age 79. She continued to live alone

until the fall of

2000 when I could see that the growing confusion, loss of organizational

skills, rational

thought, ability to manage her accounting as well as continued falls were

making her

living alone unsafe and increasingly difficult. During that time she had

fought cancer, had

surgery for cornea, so I had considered that extra stress as a reason for

cognitive loss.

She drove her car until we persuaded her to stop driving 5 years ago!

We placed her into a retirement home situation, where she coped well for a

year, walking

with a walker, then exactly 4 years ago she crashed, unable to walk anymore,

hallucinating, much more affected cognitively, swallowing an issue. It

happened

overnight, had to be admitted to hospital and from there to a nursing home

setting in a

wheelchair. It was 3 years ago we got the diagnosis of LBD. Until then I

had no idea what

was going on with her.

Our timelines coincide and now I also understand your knowledge of PDD vs

LBD. I admire

your interest in participating in the conference!

I cannot imagine caregiving at home for the length of time you have. You

must be an

amazing woman.

[Guest guest]

My moms first systems were falling, shuffling gait feet feeling as they were

stuck to floor, 6 monhs later hallucinations began. They told her LBD. Could

this be PDD?????

stimtimminss wrote: Hi again Jan,

Now I understand your response to my initial sending about Mom's timeline! She

also was

diagnosed in l993, with Parkinsons, age 79. She continued to live alone until

the fall of

2000 when I could see that the growing confusion, loss of organizational skills,

rational

thought, ability to manage her accounting as well as continued falls were making

her

living alone unsafe and increasingly difficult. During that time she had fought

cancer, had

surgery for cornea, so I had considered that extra stress as a reason for

cognitive loss.

She drove her car until we persuaded her to stop driving 5 years ago!

We placed her into a retirement home situation, where she coped well for a year,

walking

with a walker, then exactly 4 years ago she crashed, unable to walk anymore,

hallucinating, much more affected cognitively, swallowing an issue. It happened

overnight, had to be admitted to hospital and from there to a nursing home

setting in a

wheelchair. It was 3 years ago we got the diagnosis of LBD. Until then I had

no idea what

was going on with her.

Our timelines coincide and now I also understand your knowledge of PDD vs LBD.

I admire

your interest in participating in the conference!

I cannot imagine caregiving at home for the length of time you have. You must

be an

amazing woman.

> > >

> > > > I know the progress of this dementia is supposed

> > to

> > > > be 5-7 years, but my mother first

> > > > presented with " Parkinsons " about 12 years ago!

> > It

> > > > has been a slow and arduous journey

> > > > to travel with her, now 91 in a nursing home,

> > > > needing total care, unable to even reposition

> > > > herself in her wheelchair, being spoonfed pureed

> > > > foods. She has lost much of her past, to

> > > > be reconfigured with imagined happenings in many

> > > > cases, or just complete erasure. She

> > > > spends most of her time with eyes closed as

> > opening

> > > > them seems as difficult to achieve as

> > > > word retreival. Is this normal? One nurse

> > > > suggested to me that most of their residents

> > > > with LBD live through closed eyes as they

> > regress.

> > > > She tends to know me when I am there,

> > > > despite no eye contact, at times I'm not so

> > sure.

> > > > I have supported, advocated, done for her mainly

> > > > singly throughout, but now am so

> > > > relieved to find this group. I decided to

> > search

> > > > for current information on LBD and found

> > > > you!

> > > > To start, a couple more questions. Can anyone

> > give

> > > > me insight as to where this journey

> > > > will lead us from here? I think I have an idea

> > but

> > > > would like a bit more first hand

> > > > information to be able to brace myself for what

> > is

> > > > coming. Also, would there be a support

> > > > group close to Oakville Ont? I am burning out

> > and

> > > > could use some shoulders who are/

> >

> === message truncated ===

>

>

> __________________________________________________

>

[Guest guest]

I have read all your posts and my husband follows the same pattern

however a new one was added yesterday Shy Dager ..so he has parkinsonism withLBD

and Shy Drager syndrome...our new neurologist is also going to test for NPH...we

are racing through the stages it seems....he did so poorly on the clock test and

gave up doing the rest o the test..I also notice a runny nose from time to

time..a droopy eyelid comes and goes..he fell again last night and I could not

move the dead weight of f the floor...I put a pillow under his head so I could

get help but he some how managed to get to his feet...he refused to let me bring

him to the hospital because he just got out of a 4 week stay including rehab...

tracy p wrote: My moms first systems were falling,

shuffling gait feet feeling as they were stuck to floor, 6 monhs later

hallucinations began. They told her LBD. Could this be PDD?????

stimtimminss wrote: Hi again Jan,

Now I understand your response to my initial sending about Mom's timeline! She

also was

diagnosed in l993, with Parkinsons, age 79. She continued to live alone until

the fall of

2000 when I could see that the growing confusion, loss of organizational

skills, rational

thought, ability to manage her accounting as well as continued falls were

making her

living alone unsafe and increasingly difficult. During that time she had

fought cancer, had

surgery for cornea, so I had considered that extra stress as a reason for

cognitive loss.

She drove her car until we persuaded her to stop driving 5 years ago!

We placed her into a retirement home situation, where she coped well for a

year, walking

with a walker, then exactly 4 years ago she crashed, unable to walk anymore,

hallucinating, much more affected cognitively, swallowing an issue. It

happened

overnight, had to be admitted to hospital and from there to a nursing home

setting in a

wheelchair. It was 3 years ago we got the diagnosis of LBD. Until then I had

no idea what

was going on with her.

Our timelines coincide and now I also understand your knowledge of PDD vs LBD.

I admire

your interest in participating in the conference!

I cannot imagine caregiving at home for the length of time you have. You must

be an

amazing woman.

> > >

> > > > I know the progress of this dementia is supposed

> > to

> > > > be 5-7 years, but my mother first

> > > > presented with " Parkinsons " about 12 years ago!

> > It

> > > > has been a slow and arduous journey

> > > > to travel with her, now 91 in a nursing home,

> > > > needing total care, unable to even reposition

> > > > herself in her wheelchair, being spoonfed pureed

> > > > foods. She has lost much of her past, to

> > > > be reconfigured with imagined happenings in many

> > > > cases, or just complete erasure. She

> > > > spends most of her time with eyes closed as

> > opening

> > > > them seems as difficult to achieve as

> > > > word retreival. Is this normal? One nurse

> > > > suggested to me that most of their residents

> > > > with LBD live through closed eyes as they

> > regress.

> > > > She tends to know me when I am there,

> > > > despite no eye contact, at times I'm not so

> > sure.

> > > > I have supported, advocated, done for her mainly

> > > > singly throughout, but now am so

> > > > relieved to find this group. I decided to

> > search

> > > > for current information on LBD and found

> > > > you!

> > > > To start, a couple more questions. Can anyone

> > give

> > > > me insight as to where this journey

> > > > will lead us from here? I think I have an idea

> > but

> > > > would like a bit more first hand

> > > > information to be able to brace myself for what

> > is

> > > > coming. Also, would there be a support

> > > > group close to Oakville Ont? I am burning out

> > and

> > > > could use some shoulders who are/

> >

> === message truncated ===

>

>

> __________________________________________________

>

[Guest guest]

I so apologize for the length of time in responding to you. Excuses I know, but

a kidney

infection downed me, then the death of my mother's significant other at 95

years. Then I

responded but it never showed up on the conference, honest! At the time, for

some

reason, Yahoo was having trouble with " soft bouncing " to my email address.

Anyway, I am

trying again. Have just returned from the funeral.

I am sorry I can't answer your question! I only learned about the possible

difference in

diagnoses since joining this group a few weeks ago.

Your mother's symptoms sound to be much quicker in progressing than mine. We

went

about 8 years from initial diagnosis of Parkinsons to hallucinations. Cognitive

changes

were obvious throughout that time but at a slow decline and with other variables

to

consider, fighting cancer and surgery for cornea.

However, when she was admitted to her current nursing home 3 years ago and LBD

was

mentioned, the doctor said that when patients are first admitted with a

diagnosis of

Parkinsons and then dementia, the diagnosis becomes Parkinsons with Dementia. I

just

assumed that the dementia was LBD. The admitting nurse to this day considers

Mom's

diagnosis as LBD, and it certainly follows with symptoms, prognosis possibly

twice as long.

I am sorry I can't be of more help but I am sharing all I know at this time. I

am hoping the

symposium in Feb Jan C mentioned to me will give us more insight as to the

similarities

between these 2 diagnoses.

> > > >

> > > > > I know the progress of this dementia is supposed

> > > to

> > > > > be 5-7 years, but my mother first

> > > > > presented with " Parkinsons " about 12 years ago!

> > > It

> > > > > has been a slow and arduous journey

> > > > > to travel with her, now 91 in a nursing home,

> > > > > needing total care, unable to even reposition

> > > > > herself in her wheelchair, being spoonfed pureed

> > > > > foods. She has lost much of her past, to

> > > > > be reconfigured with imagined happenings in many

> > > > > cases, or just complete erasure. She

> > > > > spends most of her time with eyes closed as

> > > opening

> > > > > them seems as difficult to achieve as

> > > > > word retreival. Is this normal? One nurse

> > > > > suggested to me that most of their residents

> > > > > with LBD live through closed eyes as they

> > > regress.

> > > > > She tends to know me when I am there,

> > > > > despite no eye contact, at times I'm not so

> > > sure.

> > > > > I have supported, advocated, done for her mainly

> > > > > singly throughout, but now am so

> > > > > relieved to find this group. I decided to

> > > search

> > > > > for current information on LBD and found

> > > > > you!

> > > > > To start, a couple more questions. Can anyone

> > > give

> > > > > me insight as to where this journey

> > > > > will lead us from here? I think I have an idea

> > > but

> > > > > would like a bit more first hand

> > > > > information to be able to brace myself for what

> > > is

> > > > > coming. Also, would there be a support

> > > > > group close to Oakville Ont? I am burning out

> > > and

> > > > > could use some shoulders who are/

> > >

> > === message truncated ===

> >

> >

> > __________________________________________________

> >