Re:

[Guest guest]

Sorry folks that it has been sometime since i contributed anything but i

have been very busy we were on holiday in the U.S. (myself and my wife) in

feb and have been quite busy ever since we came back I have not seen my

father since the new year but i am going to visit at the weekend. I talk to

my mother every couple of days and it seems that my father is really

progressing rapidly with this at the moment he is now unable to dress

himself or wash properly and now my mother has to help him. At least he

allows her to help him now which is a change from his beligerence and anger

towards her. She is glad in a way that she can help with these things and

that he now allows her and asks for help, but there is also great sadness in

having to do these things for him.

I find it hard to keep up with the volume of correspondence going through my

mail box from the LBD group but just a few comments on things that i have

read recently my father also has great difficulty with the phone despite

having got a phone with big one touch dial buttons he can't seem to ring who

he wants or when he does he forgets what he wants to say or even who he is

talking to, he is also very lost even in his own house.

I suppose this condition has been working on him for some time and it is

interesting to read about coincidence of surgery / trauma and onset of LBD.

My mother always says that he has never been the same since an accident at

work 10 yrs ago in which he broke a couple of bones in his back. He

subseqeuntly often complained of neck pain. While he recovered physically

quite well he carried a lot of resentment about the accident and subsequent

compensation battle and his inability to return to the same type of work

which had been his life.

He has been taking Zyprexa (olanzapine) for a number of months and that

seems to have helped with hallucintions although while on 5mg daily he was

very dopey and slept a lot so we have cut him back to 2.5mg. He was recently

prescribed Reminyl (i think the generic name is galantamine) but this seems

to be causing stomach upset and depression so i think we will discontinue

this.

Another aspect of his disease is his frequent complaints about his bladder

and bowels he has had all the tests and nothing has been found but he

says he has to go all the time it is hard to know whether he does go or

whether he just thinks he does.

I am also interested in any complementary approaches to treatment. Whilst we

were in America we met some people who work in the nutritional field and

made enquiries about any possible approach we could try. They felt that my

father had progressed too far for any dietary intervention to do much good

but that for someone in the early stages cutting out all processed food and

additives cutting down on grain and supplementing with enzymes and

probiotics and using a herbal de-tox would all be useful. A lot of this info

(and more) is contained in Electrical Nutrition by D.Hiestand.

Anyway a lot to digest here so i'll leave it for now i'll try and write a

little bit, more often instead of in big chunks like this.

Bye for now God Bless.

[Guest guest]

,

I am so sorry about all the difficulties your sister is causing you and the

doctors. What a difficult thing to deal with!! I wonder if there is such a

thing as a restraining order for doctors to use against people who harass

them like that.

I know what you mean about the cycle of good days/bad days. There were

hardly any good days this past winter, but since doubling the Aricept the

cycle has improved. It makes it so hard for me to plan to do anything as I

just don't know what kind of shape he'll be in. When he's good he's really

good now, but no telling when that will be.

Bob is currently only on Aricept, the additional dose of which is helping,

and Sinemet, which we suspect has about run its course of usefulness - at

least re posture. His gait is still much better than before the Sinemet. It

apparently is the " cadillac " of medications for Parkinsonism, so I don't know

where we'll go from there. We are trying massage therapy before going to one

of three other meds the doctor discussed, each of which has serious side

effects. Some days the massage and home exercises seem to be helping, on

other days they appear to be useless.

From your description of your mother's current condition, I think I will just

have to be very grateful that my husband is in such " good " shape. Painful as

it must be to write about, I thank you for the description, as it helps me

know what probably lies ahead.

Hoping things get better there -

Cheryl

[Guest guest]

Cheryl--My sister the social worker says that we -- as the family--

can get a restraining order against our other sister to keep her away

from doctors and even from mother--but I'm still hoping that she will

grow up and straighten out now that mother isn't there to baby her. I

have a meal with her now and then and I listen to her boyfriend

problems and I am honest with her about what I think of how she's

living her life. Mother was always trying to rescue her which enabled

her to stay a baby forever. I can't rescue her but I can't abandon

her either.

I am trying not to think too much (hard to do) and take each day as

it comes. I did fulfill my promise to myself to do oodles of cleaning

this weekend. Didn't make it to the kitchen but on the positive side,

a dirty kitchen is something to use up nervous energy on during this

week. Before I could clean house, of course, I HAD to drive halfway

across the county to buy a special device to clean ceiling fan blades-

-on sale at linens 'n things. I even gave the cats baths. I went to

see the cat I've been eyeing in the shelter but didn't adopt her yet.

I started a new painting. I spent a few hours with a novel I'm in the

middle of (Prodigal Summer--very good). I turned all the nervous

energy to productive use.

Mother also has a kind of nervouse energy. Many of her delusions are

of needing to go somewhere else for one reason or another. I don't

know if that is a psychological thing--wanting to get away from the

illness--or something else. When she was in my house, she saw

terrorists and wanted to escape. Then she tried to escape from the

nursing home (in dead of winter) and ended up in locked ward. Now

she's in a wheelchair but convinced that she's in someone else's room

and that person wants her to get out of the room. Or it's a

whorehouse upstairs and we have to flee lest we be captured. Or we'd

better head for home NOW because she hates to drive in the dark.

There's always some reason that we should be on the move instead of

sitting still. It's exhausting just to discuss it. It's exhausting

for her to live it.

Mother had " Parkinsons " and took assorted meds and was living a

normal life for at least 5 years before all this other business--all

the LBD symptoms--appeared. It's been less than a year since the

first hallucinations. There was a year or so before that when she

would sometimes be confused about who was still living in her house,

but it was really last July that everything truly went to pieces.

just take one day at a time and truly try to " Be Here Now " because

there is no way to get any of this under control.

> ,

>

> I am so sorry about all the difficulties your sister is causing you

and the

> doctors. What a difficult thing to deal with!! I wonder if there

is such a

> thing as a restraining order for doctors to use against people who

harass

> them like that.

>

> I know what you mean about the cycle of good days/bad days. There

were

> hardly any good days this past winter, but since doubling the

Aricept the

> cycle has improved. It makes it so hard for me to plan to do

anything as I

> just don't know what kind of shape he'll be in. When he's good

he's really

> good now, but no telling when that will be.

>

> Bob is currently only on Aricept, the additional dose of which is

helping,

> and Sinemet, which we suspect has about run its course of

usefulness - at

> least re posture. His gait is still much better than before the

Sinemet. It

> apparently is the " cadillac " of medications for Parkinsonism, so I

don't know

> where we'll go from there. We are trying massage therapy before

going to one

> of three other meds the doctor discussed, each of which has serious

side

> effects. Some days the massage and home exercises seem to be

helping, on

> other days they appear to be useless.

>

> From your description of your mother's current condition, I think I

will just

> have to be very grateful that my husband is in such " good " shape.

Painful as

> it must be to write about, I thank you for the description, as it

helps me

> know what probably lies ahead.

>

> Hoping things get better there -

> Cheryl

[Guest guest]

Hi ,

My husband is going through periods of the " nervous energy " and it is

exhausting. Usually wants to go somewhere, for some reason or another, and

keeping him from involving other people is getting to be a challenge. I have

had to stop the mobic med because it was making the problem worse and we tried

vioxx this weekend - that caused the same problems too. May have been the

hallucinations - my husband said he went out on the porch because there were too

many people around him in the house, sat on the steps talking to someone (no one

there) and then finally came back in to watch the basketball game on TV.

One of my husband's children became angry with me because I set him straight

about taking advantage of his dad. He tried to organize the other children to

come here to " see what was going on and fix the problem " . To their credit the

other children stayed out of it - and fortunately it would be a major trip for

any of them to come here. I don't need any extra problems right now. I have a

good relationship with my husband's sister and one of my husband's sons/DIL.

Just keeping good boundaries and doing the best I can - I wouldn't want to do

restraining orders if I don't have to either. -lula

[Guest guest]

Everyone has an idea for fixing the problem. We're all grasping at

straws.

The evil sister wants mother moved to another nursing home --which

she has never seen--so she could keep her company more often.

a. I went to see the other nursing home and it was like a county poor

farm in the olden days--just awful

b. on the other hand that sister keeps talking about how it is too

upsetting to be with mother so she says she can't visit

Social worker sister decided mother was hallucinating because she was

gluten intolerant. The internist did the test for us just to indulge

us and of course mother is NOT gluten intolerant.

At lunch today I saw my internist and he wants me to take cholesterol

pills--but mother took cholesterol pills for years and the pills

didn't help her cholesterol at all. How do I know if cholesterol

pills CAUSE LBD? How do I know if high cholesterol CAUSES LBD?

I think spouses have a much harder time emotionally because this is

the main significant other who can't be a companion anymore. A child

can still have or hope to meet a significant other wihout any feeling

of betrayal of the LO. In fact one of my mother's few positive

hallucination is that the evil sister is getting married " later

today " . But a child has to wonder if this horrible affliction is

hereditary. Patient and spouse is a loss to mourn. Patient and

children are one--at least in my family where emotional boundaries

were always a little fuzzy, parent and child are one.

By the way, my doctor (whose wife was social worker sister's best

friend in childhood so he knows the whole family) told me I was in

great shape considering the life I'm living. I think that means that

I'm still vertical so I'm doing okay.

I'm going to make that my new motto: if you are vertical you are O-

KAY!!!!

> Hi ,

>

> My husband is going through periods of the " nervous energy " and it

is exhausting. Usually wants to go somewhere, for some reason or

another, and keeping him from involving other people is getting to be

a challenge. I have had to stop the mobic med because it was making

the problem worse and we tried vioxx this weekend - that caused the

same problems too. May have been the hallucinations - my husband

said he went out on the porch because there were too many people

around him in the house, sat on the steps talking to someone (no one

there) and then finally came back in to watch the basketball game on

TV.

>

> One of my husband's children became angry with me because I set him

straight about taking advantage of his dad. He tried to organize the

other children to come here to " see what was going on and fix the

problem " . To their credit the other children stayed out of it - and

fortunately it would be a major trip for any of them to come here. I

don't need any extra problems right now. I have a good relationship

with my husband's sister and one of my husband's sons/DIL. Just

keeping good boundaries and doing the best I can - I wouldn't want to

do restraining orders if I don't have to either. -lula

[Guest guest]

OK, OK let's not get too crazed. Just because your mother wasn't helped by

high cholestrol meds doesn't mean you won't be. We really don't want our

LBD group to be whittled away by strokes and heart disease and everything

else. I don't have high cholestrol but have 2 friends who have the family

kind: One is fat and eats bacon and the other is a vegetarian and quite

slender. But even he eats eggs and ice cream (daily?), saying the meds will

deal with the problem. So I see a tendancy for people who take meds to go

ahead and eat high cholestrol food. Does this fit your mother?

Anyway, ANTHING, may have caused the LBD and so far there is no evidence

that it is inheritated. Also, take heart from that nun's study story that

was in Time magazine a few weeks ago. On autopsy, a lot of those nuns had

Alzheimer brains who never showed any symptoms in life. Supposedly because

they kept themselves stimulated (mentally that is or maybe the other way

too) and physically healthy. After saying all that, I must admit I don't

take all my good advice: I'm 15 pounds overweight, and a couch potato. If

it wasn't for walking the dog, and my husband and taking a Spanish class,

I'd be brain-dead. I loved your slogan: If you are vertical, you are OK!

Imelda

[Guest guest]

Imelda--I guess that I'm getting hyper because too many things are

coming at me at the same time. I tell myself that I should be

grateful to be hanging in there when all around me are drowning in

sorrows--but it's hard to feel lucky when I look around me and see

their misery.

The fact is that we don't know why people get LBD and my mother did

take those pills for more than a decade. I am not believing that

caused her problem--I'm just saying that I don't know it didn't. When

you don't know the cause, anything can be suspect. She never smoked

or drank but she loved sweets. I doubt that sugar is the cause, but

one can not be certain.

Do we know if LBD was around in the same numbers two or three decades

ago? How could we know if they didn't know it existed?

There is some discussion of Parkinsons numbers increasing--possibly

from insecticide exposure. And yet I don't like bugs in my house so I

do hire Aerex each spring to spray inside and outside.

Actually I have much bigger things to worry about than health in the

future. They are laying people off like crazy where I work and my

boss is going into some big meeting this afternoon that actually

could be an announcement that we're all out of jobs. She's jumpy and

I'm annoyed with her because she's jumpy. Etc. I'm the only person I

know who doesn't have a major immediate problem--and I can't fix any

of them or their problems.

I need a week in bed is what I really need--but I sure hope I don't

end up with a week with nothing to do but go to bed.

> OK, OK let's not get too crazed. Just because your mother wasn't

helped by

> high cholestrol meds doesn't mean you won't be. We really don't

want our

> LBD group to be whittled away by strokes and heart disease and

everything

> else. I don't have high cholestrol but have 2 friends who have the

family

> kind: One is fat and eats bacon and the other is a vegetarian and

quite

> slender. But even he eats eggs and ice cream (daily?), saying the

meds will

> deal with the problem. So I see a tendancy for people who take meds

to go

> ahead and eat high cholestrol food. Does this fit your mother?

> Anyway, ANTHING, may have caused the LBD and so far there is no

evidence

> that it is inheritated. Also, take heart from that nun's study

story that

> was in Time magazine a few weeks ago. On autopsy, a lot of those

nuns had

> Alzheimer brains who never showed any symptoms in life. Supposedly

because

> they kept themselves stimulated (mentally that is or maybe the

other way

> too) and physically healthy. After saying all that, I must admit I

don't

> take all my good advice: I'm 15 pounds overweight, and a couch

potato. If

> it wasn't for walking the dog, and my husband and taking a Spanish

class,

> I'd be brain-dead. I loved your slogan: If you are vertical, you

are OK!

> Imelda

[Guest guest]

,

You say that you are the only person you know that doesn't have a major

problem. That may be true, but you do have major STRESS!! I hope the

situation with the job settles down so that you only have all the other

stresses in your life to deal with. Hang in there.

[Guest guest]

--of course you are right. Thank you for the concern. There's

even more stuff going on around me than I've mentionned here and I'm

about to pop my cork with stress I suppose.

> ,

> You say that you are the only person you know that doesn't have a

major

> problem. That may be true, but you do have major STRESS!! I hope

the

> situation with the job settles down so that you only have all the

other

> stresses in your life to deal with. Hang in there.

>

[Guest guest]

Mai-Liis--I believe exactly what you are saying is true (although I

have no facts --just " everyone " says so) and that's why I am

hesitating to take this cat. I don't want to amputate her toes. Many

people do claim that adult declawing causes problems although all the

people who have done adult declawing tell me that it doesn't. At 8

years old and not terribly friendly either, I doubt anyone else will

take her.

She is a beautiful Siamese. I'm not positive if she's chocolate or

seal but she's so tiny that she must be from good bloodlines. Somehow

she and her sister ended up in this shelter after being removed from

an " abusive " household. She's been there more than a month. The

sister got adopted a couple weeks ago. You can see how terrified and

depressed she is--especially when the dogs bark. The dogs are not in

the same room but it sounds like they are.

I doubt anyone else will give her a chance. I've gone over there and

tried to steer people to her and they said she looked unhappy and

kept moving. She fights their efforts to take her out of the cage--I

admire her independence and spunk but I think it could kill her.

Without me, she may spend her entire life in that cage--and I don't

know how long she has left. That's supposed to be a no-kill shelter

if the cat makes it past the initial inspection, but I'm not 100%

confident that's true.

I always lived with my college furniture and previously loved pieces

(previously loved this one in grandma's house and previously loved

that one in great aunt's condo etc) and didn't think too much of the

issue of declawing before. Now I have a few nice things for the first

time in my life and I'm not willing to deal with claws. My two rescue

boys came declawed. I was looking for a declawed female and fell in

love with this little girl. I wish someone else would adopt her but

if no one does then she'd be better off declawed in my house than in

a crowded cage.

I'm going in for some minor outpatient surgery on Monday and so I

won't go back to the shelter for at least 10 more days. Maybe someone

else will adopt her in the meantime??????? If not, I've already

named her.

-- In LBDcaregivers@y..., " Mai-Liis " <MaiLiis@i...> wrote:

> , As a fellow cat lady, I must speak up. Declawing an 8

yr old cat would not be a good thing. It is major surgery, and the

vet cuts off what for us would be half of our toes. I, too, declawed

all my cats as kittens before I learned the actual nature of the

surgery. Now I believe it to be cruel....but that is not why I am

writing. I think a cat which has had all its nails for a major

portion of its life is going to be seriously affected behaviorally by

this surgery. If you have had a different experience in the past,

please...please forgive me for butting in.

>

> Mai-Liis

>

>

> I am contemplating getting a third cat. Part of my head says I need

> another cat like a hole in my head and my heart says that of all

the

> needy beings around me this cat is the only one I can actually save

> from her dire fate. But she's 8 years old and I would have her

> declawed if I took her so I'm still hoping someone else will take

her

> out of the shelter.

>

> Have a safe and happy trip.

[Guest guest]

, I, too, wish to chime in on the declawing issue.

We had a wonderfully " human " cat whose joy in life was to tease us with his

clawing! He had beautiful long, tapered toes, which he used to scoop food

from his bowl to his mouth!! Unfortunately, he also used them to ruin my

husband's couch, and developed a favorite scratching spot on the carpet to

taunt us. When we moved to the Gulf Coast and were to stay in corporate

housing for a few weeks I was concerned about the damage he might do. We had

to kennel him for the first week anyway, so I asked the vet to declaw him

while he was there. Oh, had I only known!*

First, the vet said the surgery had been very problematic, as by THREE years

old the arteries were large enough that it was very difficult to perform the

surgery without knicking them and causing him to bleed to death! Whew, we

were lucky!

Second, his beautiful long toes weren't anymore. His forefeet were " stubbed. "

Third, he never again used his paws as spoons.

The good news is that he forgave us and in moments of exuberance would run

10'-15' up a tree. Couldn't stay there, so he'd jump down. I saw him send a

huge dog yipping in agony when Giz swiped at him and not only missed but

didn't have any claws, either!!

Your cat is 8 yrs old - I think your vet should be providing you with

" informed consent " about the danger involved in declawing at that age. For

the record, I bought a $3 " claw box " at Walmart for our new kitty 1.5+ yr ago

and she is still using it. It's made from cardboard and well worth the mess

made when pieces of paper are tossed about.

Cheryl

*Just read Eve's comment about her cats not losing part of their toes. I

sure would like to know who her vet is and use that person if necessary!! It

has been my understanding that it was necessary to remove the first segment

of toe because the root of the nail is there and it would only grow again.

Now I know to shop for the right vet if I ever have to deal with declawing

again. Thanks, Eve.

[Guest guest]

Cheryl.

Your letter reminded me of one of our old cats. He too used to

"swipe" and pick up food (especially a shrimp!) with his nail,-yes just

one nail. We thought he was very clever. I had forgotten about

that and you re-newed fond memories.

My daughte,r (after her M.F.A!.), has decided she wants to be a vet.

and so has been working for a vet for a year in order to gain

experience.. I remember one story she told me about a declawing.

Seems this is a very "venous" area and prone to bleeding. The stitching

was not done correctly on one toe and think the cat almost bled to death?

I will check with her and see what the consensus is there. I know

the Dr.s try to please the owners. Perhaps I am wrong about the pain?

I don't know but have also heard these cats can never go outside as they

have no real protection.

Ok, I'm obsessing!!!!!!!!!!! Need to go to bed, it's been a long

day!

LewyLady@... wrote:

, I, too, wish to chime in on the declawing

issue.

We had a wonderfully "human" cat whose joy in life was to tease us with

his

clawing! He had beautiful long, tapered toes, which he used to

scoop food

from his bowl to his mouth!! Unfortunately, he also used

them to ruin my

husband's couch, and developed a favorite scratching spot on the carpet

to

taunt us. When we moved to the Gulf Coast and were to stay in

corporate

housing for a few weeks I was concerned about the damage he might do.

We had

to kennel him for the first week anyway, so I asked the vet to declaw

him

while he was there. Oh, had I only known!*

First, the vet said the surgery had been very problematic, as by THREE

years

old the arteries were large enough that it was very difficult to perform

the

surgery without knicking them and causing him to bleed to death!

Whew, we

were lucky!

Second, his beautiful long toes weren't anymore. His forefeet

were "stubbed."

Third, he never again used his paws as spoons.

The good news is that he forgave us and in moments of exuberance would

run

10'-15' up a tree. Couldn't stay there, so he'd jump down.

I saw him send a

huge dog yipping in agony when Giz swiped at him and not only missed

but

didn't have any claws, either!!

Your cat is 8 yrs old - I think your vet should be providing you with

"informed consent" about the danger involved in declawing at that age.

For

the record, I bought a $3 "claw box" at Walmart for our new kitty 1.5+

yr ago

and she is still using it. It's made from cardboard and well

worth the mess

made when pieces of paper are tossed about.

Cheryl

*Just read Eve's comment about her cats not losing part of their toes.

I

sure would like to know who her vet is and use that person if necessary!!

It

has been my understanding that it was necessary to remove the first

segment

of toe because the root of the nail is there and it would only grow

again.

Now I know to shop for the right vet if I ever have to deal with declawing

again. Thanks, Eve.

[Guest guest]

My guys have their claws. In my house they sometimes seem to claw at one

couch, but leave no marks. A chair that was my mothers, however, seems to

be actually clawed. When my mom lived next door, my boy cat took to hanging

from her wallpaper and sliding down the wall - t was that heavy vinyl stuff.

Mind you - she let him do it - and he did a number on her chair. Now that

that furniture and wallpaper is gone - no problem. They have these perches

covered in carpet which they love to scratch, and a turbo scratcher - which

is a plastic circle, with cardboard in the middle which yu drop catnip in,

and a ball around the outside. The cardboard is replaceable, which is grea,

because they really go at it. In 3 and 1/2 years of out and out fighting,

neither of them has scratched each other or me with their claws out. Even

the odd time when my one guy plays " I'm a Wiiiild Cat " hi claws stay in.

They're both indoor cats. Once in a while, I clip their claws. The vet

sells these special little scissors. There are clippers too. I don't know,

maybe it's just our family - my daughter won't let them remove her ingrown

toenail either, even though it hurts a lot.

My $0.02. Hez

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[Guest guest]

D.L.,

I don't think there has been an absolute determination made on cause of LBD, but from what I read, there is a genetic predisposition to it. That does not mean that every one in the line will get it. Simply a predisposition.

My husband's diagnosis was made with the following:

1) complete physical work-up, including bio-chem tests, ALL of which were absolutely normal (others may have conditions that would show up, but wouldn't be indicative of LBD)

2) complete neurological work-up by a Cognitive Neurologist

3) day+ -long battery of neuropsychological tests - which show everything from how well the individual is functioning intellectually to their ability to see things in space and reproduce drawings.

I have heard of doctors proferring dx based on the MMSE (Mini-Mental Status Exam), but my understanding is that this tool, since it is "mini," is best reserved for follow-up visits to assess the degree of deterioration since the last visit.

While the tools above, along with the accepted international standards (

LEWYNET from Nottingham Med School ) for the disease my offer a highly likely diagnosis, I believe that 100% assurance still relies on autopsy of brain tissue. I believe, however, that science is quite close to offering a 99% assurance based on multiple factors.

Cheryl

[Guest guest]

What has me convinced that dad has LBD is the fact that he had such a rapid decline, had fully formed hullucinations, i.e. little people, bandits, cat,etc. He lost his memory very early on and yet he would have moments of clarity. He was diagnosed on Sept.9,1999 and by November of that year he was in horrible shape. In Jan. of that year he had to be placed in a nursing home (incontenent, unable to walk without assistance, unable to find his way through his own home.) He now has to be fed, stays in a walker or in bed all the time. He doesn't know us.

Re:

D.L., I don't think there has been an absolute determination made on cause of LBD, but from what I read, there is a genetic predisposition to it. That does not mean that every one in the line will get it. Simply a predisposition. My husband's diagnosis was made with the following: 1) complete physical work-up, including bio-chem tests, ALL of which were absolutely normal (others may have conditions that would show up, but wouldn't be indicative of LBD) 2) complete neurological work-up by a Cognitive Neurologist 3) day+ -long battery of neuropsychological tests - which show everything from how well the individual is functioning intellectually to their ability to see things in space and reproduce drawings. I have heard of doctors proferring dx based on the MMSE (Mini-Mental Status Exam), but my understanding is that this tool, since it is "mini," is best reserved for follow-up visits to assess the degree of deterioration since the last visit. While the tools above, along with the accepted international standards ( LEWYNET from Nottingham Med School ) for the disease my offer a highly likely diagnosis, I believe that 100% assurance still relies on autopsy of brain tissue. I believe, however, that science is quite close to offering a 99% assurance based on multiple factors. Cheryl

[Guest guest]

Dear Ed, I am so sorry that the information scared you. Perhaps, to relieve

your fears or treat them correctly if they are not as they seem, you should

seek another opinion. If you say where you live there might me someone in

the group who could refer you. I was told there is no test that is worth

doing on a living person to diagnos LBD, or Alzheimer for that matter. The

test is a brain biopsy and is not worth doing. That's why more research is

need. More research might discover a gene that could be tested or other

forms of brain imaging not so invasive. Currently there is no such test.

Please let us all know what you find out. Imelda

[Guest guest]

Kathy

Thank you for your comments they are much appreciated. A threat to leave would be a last desperate measure as I value all your advice as I hope you can value some, if not all, of my contributions.

Perhaps you agreed rightly, my sensitivity to the use of the English language is behind some of my remarks, but if it is, its not that which consciously prompts my comments about this invented word.

It may be that I am to insular in my approach to American or International matters, but there again having spend most of my working life travelling around the world and a good part of that in the United States and Canada you would think I should be Internationalised already.

I think with hindsight that I'll have to get some blinkers (or don't you use that word?) in future.

Kind regards

======================================My name is J S The following are my e-mailspashley@... [Preferred]pjsashley@...p.ashley1@...======================================

-----Original Message-----From: Kathleen Sent: 15 August 2001 19:11To: LBDcaregivers Subject:

,

I have enjoyed reading your messages and hope that they will continue. My husband is unable to define what he is experiencing and I believe the more I know what he is going through, the better equipped I am to help him. I understand how playing on the English language can be insulting, especially for someone from Great Britain. I hope you will be able to overlook the terminology and continue to converse with us. Your insight may help us all to become better caregivers.

If you do follow through on your earlier threat to leave, please let me know where you are going.

Regards, Kathy

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.265 / Virus Database: 137 - Release Date: 07/18/2001

[Guest guest]

I think with hindsight that I'll have to get some blinkers (or don't you use that word?) in future.

In this country we call it 'blinders'. At least I think so! English is not my native language.

Mai-Liis

[Guest guest]

,

Thanks for your understanding. I spoke with my husband who is in the middle stages of Lewy Body and mentioned the slang term "Lewyland". His immediate reaction was similiar to yours. He felt it was insulting.

You are an inspiration and I enjoy your spirit.

Kathy

RE:

Kathy

Thank you for your comments they are much appreciated. A threat to leave would be a last desperate measure as I value all your advice as I hope you can value some, if not all, of my contributions.

Perhaps you agreed rightly, my sensitivity to the use of the English language is behind some of my remarks, but if it is, its not that which consciously prompts my comments about this invented word.

It may be that I am to insular in my approach to American or International matters, but there again having spend most of my working life travelling around the world and a good part of that in the United States and Canada you would think I should be Internationalised already.

I think with hindsight that I'll have to get some blinkers (or don't you use that word?) in future.

Kind regards

======================================My name is J S The following are my e-mailspashley@... [Preferred]pjsashley@...p.ashley1@...======================================

-----Original Message-----From: Kathleen Sent: 15 August 2001 19:11To: LBDcaregivers Subject:

,

I have enjoyed reading your messages and hope that they will continue. My husband is unable to define what he is experiencing and I believe the more I know what he is going through, the better equipped I am to help him. I understand how playing on the English language can be insulting, especially for someone from Great Britain. I hope you will be able to overlook the terminology and continue to converse with us. Your insight may help us all to become better caregivers.

If you do follow through on your earlier threat to leave, please let me know where you are going.

Regards, Kathy

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.265 / Virus Database: 137 - Release Date: 07/18/2001

[Guest guest]

Dear Kathleen

From the range of e-mails on this subject it would appear to me that I'm in a minority, it may be a patient versus carer thing.

Having canvassed both early onset patients and carers in the UK I think it is more likely a UK versus USA thing.

All the carers in the UK I have spoken to share my views so I think it's down to a question of the use of the English language by our respective countries.

That means, I suppose, we are both right or wrong depending on you viewpoint.

Kind regards

======================================My name is J S The following are my e-mailspashley@... [Preferred]pjsashley@...p.ashley1@...======================================

-----Original Message-----From: Kathleen Sent: 17 August 2001 23:17To: LBDcaregivers Subject: Re:

,

Thanks for your understanding. I spoke with my husband who is in the middle stages of Lewy Body and mentioned the slang term "Lewyland". His immediate reaction was similiar to yours. He felt it was insulting.

You are an inspiration and I enjoy your spirit.

Kathy

RE:

Kathy

Thank you for your comments they are much appreciated. A threat to leave would be a last desperate measure as I value all your advice as I hope you can value some, if not all, of my contributions.

Perhaps you agreed rightly, my sensitivity to the use of the English language is behind some of my remarks, but if it is, its not that which consciously prompts my comments about this invented word.

It may be that I am to insular in my approach to American or International matters, but there again having spend most of my working life travelling around the world and a good part of that in the United States and Canada you would think I should be Internationalised already.

I think with hindsight that I'll have to get some blinkers (or don't you use that word?) in future.

Kind regards

======================================My name is J S The following are my e-mailspashley@... [Preferred]pjsashley@...p.ashley1@...======================================

-----Original Message-----From: Kathleen Sent: 15 August 2001 19:11To: LBDcaregivers Subject:

,

I have enjoyed reading your messages and hope that they will continue. My husband is unable to define what he is experiencing and I believe the more I know what he is going through, the better equipped I am to help him. I understand how playing on the English language can be insulting, especially for someone from Great Britain. I hope you will be able to overlook the terminology and continue to converse with us. Your insight may help us all to become better caregivers.

If you do follow through on your earlier threat to leave, please let me know where you are going.

Regards, Kathy

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.265 / Virus Database: 137 - Release Date: 07/18/2001

[Guest guest]

Misty,

Just a few words of encouragement. We are all scared and struggling.

Use to be if I went to the MD with a problem, it could get solved. Not

anymore. They seem to know less than most people here. I don't have

the same situation as you, as my Mom is with me. Each situation is

different but there is an underlying sameness about it all. Lonely,

scared and unsureness. And it a day to day deal. The people who most

hang in with you are here and they also have the most information. Keep

coming back.

Donna

PS The police and EMS people are usually pretty understanding. I have

had to call them.

How long a minute is depends on what side of the bathroom door you are

on.

Hi everyone,

I get so scarred when I read your post sometimes,I guess I know I will be in your shoes somewhere down the line! Right now my husband LEE is in bed about 21 hours a day, he does not sleep all day like he did,but I find him just lying in bed starring at the ceiling. He also has another diseases called CIDP which causes him much pain,so he is on a lot of pain medication.

His walking goes as far as the kitchen for dinner at night and trips to the bathroom thats as far as he goes for the last three months,then right back to bed.

I had a real scare a couple of nights ago,I gave Lee soup[chicken rice] and he started to choke on it, he said it got stuck at the bottom of his throat and just stayed there, it would not come up or go down.He just coughed and choked and tears runing down his cheeks I was ready to call the fire dept.IT did not go down his windpipe so he could breath, but sure shook me up. Lee gets very nauseated lately I wished I knew why?,also has a lot of hickups,I always thought you had hickups because you ate to fast,Lee has them now when he has had no food or drink for hours prior lee has all the symtoms that are associated with lewy body diseases,but the doctor said he beleives its lewy body diseases with dementia,but he is so with it now mentally I can't beleive he has dementia,

Help,am I in denial or what!It sure does get lonely here! Thank for letting me share,take care

Misty

[Guest guest]

Misty,

Have you ever heard Progressive Supernaclear Palsy?edical term but a major symptom is swallowing problems. Dudley has this illness and I'm sure you can find information about it on the Web. I read a brochure about it a while ago and I remember that some of the symptoms were similiar with LBC/Parkinsons. A major difference is the difficulty with swallowing.

Regards, Kathy

Hi everyone,

I get so scarred when I read your post sometimes,I guess I know I will be in your shoes somewhere down the line! Right now my husband LEE is in bed about 21 hours a day, he does not sleep all day like he did,but I find him just lying in bed starring at the ceiling. He also has another diseases called CIDP which causes him much pain,so he is on a lot of pain medication.

His walking goes as far as the kitchen for dinner at night and trips to the bathroom thats as far as he goes for the last three months,then right back to bed.

I had a real scare a couple of nights ago,I gave Lee soup[chicken rice] and he started to choke on it, he said it got stuck at the bottom of his throat and just stayed there, it would not come up or go down.He just coughed and choked and tears runing down his cheeks I was ready to call the fire dept.IT did not go down his windpipe so he could breath, but sure shook me up. Lee gets very nauseated lately I wished I knew why?,also has a lot of hickups,I always thought you had hickups because you ate to fast,Lee has them now when he has had no food or drink for hours prior lee has all the symtoms that are associated with lewy body diseases,but the doctor said he beleives its lewy body diseases with dementia,but he is so with it now mentally I can't beleive he has dementia,

Help,am I in denial or what!It sure does get lonely here! Thank for letting me share,take care

Misty

[Guest guest]

Misty,

I am just getting around to my e-mails and yours

really got my attention. When my first husband was

dying of cancer, the doctors did not tell him-just me.

This was very destructive on two levels. First, it

did not allow him the opportunity to face and deal

with decisions regarding his imminent death.

Secondly, it created a wall between us at a time when

we needed each other more than any other. Only you

will know your husband's feelings regarding this

issue, but I think you should explore them. For some

reason, doctors will not tell patients these things

unless they ask. I finally forced the doctors to be

honest with my husband, and although he never really

accepted his diagnosis, at least we were able to be

open with both of our feelings at the end.

Regarding the other issue of leaving your husband

alone and being afraid of his choking. You must do

what you feel comfortable with, not him, because if

something was to happen, you must live with it, not

the doctor. Many of us have been forced to bring in

caregivers, or as I have recently done, put our loved

ones in homes or hospitals for their care, and I dare

say none of them have said " Okay, that's fine with me.

You must do whatever is necessary for your own peace

of mind, as well as your husband's safety.

Unfortunately, hindsight is useless in these

situations.

Hang in there.

>

> I suggested having someone come in

> the house to visit him while I was at work,but he

> absolety refused and became very angrey.

I told his doctor about this and he

> said if he more confortable leave him alone.[lee

> does not know the prognoses of this diseases I felt

> that was the doctors job not mine, maybe the doctor

> never said anything is because lee is such a deep

> depression now,prozac help a bit]

>

>

>

> ---------------------------------

>

[Guest guest]

"on site total caregiver." He did so well for awhile.

Cheryl,

That's ONE of the biggest problems with this *+# LBD, just when we find things have calmed down a bit, something new starts up, and we are back on the rollercoaster again. Hang in there.

Ev

P.S. would have written sooner but rec'd notice of a virus.

[Guest guest]

Thanks for the input. Your sounds like he is in about the same

place LBD wise as Lou. Lou started with the PD meds because his

symptoms started with that. Sinemet and agonists and now he

continues the Sinemet with Comtan ( a COMT type drug). I know these

both contribute to hallucinations but he is mobile (with falls

sometimes) but really began falling in August when the doctor reduced

the Comtan to help the hallucinations. This ended him in the

hospital and nursing home (terrible experience). Anyway he has been

on the 10 Aricept since Feb 2000 and Seroquel added just two months

ago. He still has hallucinations and I handle them in the same way

you do by acknowledging that he is seeing these people and things but

I cannot see them. Lou is 62 and started this 14 years ago. He does

feed himself, but needs help sometime with dressing, or some things

are put on inside out, backwards, sometimes even tries to put a shirt

on his legs. He is a sweat pant, sweat shirt guy for the winter.

I have not heard that the Sinemet cancells out the Seroquel.

I don't know if the Aricept is still working but also wonder if

leaving it for Exelon or Reminyl would make things worse before they

might get better.

Thanks again.