help

[Guest guest]

Sausage McMuffin (no egg; it doesn't say anything about cheese) is 9

Points.

----- Original Message -----

From: " valarie30 "

does anyone have the fast food book of points? can you please look

up a sasuage Mc muffin with NO CHEESE AND NO EGG

how many points is that

thank so much (i will buy the book at my next meeting!

[Guest guest]

can you please look

> up a sasuage Mc muffin with NO CHEESE AND NO EGG

Don't have to buy the book, if you can find http://www.dwlz.com/

Dotti's has points for Fast Food and other restaurants.

They've got this:

Sausage McMuffin (360 cal/23 g fat/26 g carbs) 9.5

Unsure if those come with eggs and/or cheese, but there was another listing

for

Sausage McMuffin w/egg (440 cal/28 g fat/27 g carbs) 11.5

This site has Mc's Sausage McMuffin information, so you could use the

slider and figure it out.

http://www.mcdonalds.com/countries/usa/food/nutrition_facts/breakfast/index.

html

To thank me, contribute a can of something to the next food barrel/food

drive for the hungry you see set up somewhere.

[Guest guest]

I used to take a cup of the " Taco Soup " made without any

meat and sugar-free Jello to lunch with me. It filled

me up (all that fiber!) and the Jello satisfied my sweet

tooth.

Increase that water drinking! It honestly does help.

Add ice, a slice of lemon or lime, drink Perrier with a

twist, whatever you can do to increase your water

consumption.

It is all worth it. Chew a stick of sugarless gum if

you want to " munch " . Also, sometimes brushing your

teeth will help, too.

Good luck. A binge never feels as good as being thin

does.

> I am having issues. I have been doing Weight Watchers since 1997. My

> problem is this, all I do is think about food constantly, am I staying in my

> point range, what can I eat for lunch that isn't many points etc. I think

> this comes from the perfectionist category. Any advice would be wonderful

>

>

>

> Amy

>

>

>

[Guest guest]

In a message dated 4/13/02 3:45:16 PM Eastern Daylight Time,

dumplin@... writes:

> I was given a diet to follow by my doctor with

> no explanations. I've seen you should eat as few as 20 carbs a day or

> lower

> and I've seen you should have no more than 75 carbs a meal.

Hi Tammy,

It would really be great if the diet the doctor or nutritionist gave to

diabetic patients would work for everyone, but it doesn't. That is why it is

so hard for doctors to explain diabetes. Diabetes is different with each

individual. Some of us can eat more carbs than others. Some people follow a

low-carb diet, others follow the ADA diet. I worked out my own plan which is

eating smaller portions from all the basic food groups. The best way to find

out what will work for you is to eat, then test 2 hrs later. It will not

take but a few weeks before you will know what you can and cannot eat.

Continue asking questions, if necessary. We are all here to help each other.

Eunice

Type 2 - Nutrition/Exercise/Positive Attitude/Faith in God

[Guest guest]

Poor circulation is what caused me to loose my second leg above the knee so

I would be very concerned about PAD and be concerned about my BS readings

and why they are so high in the AM, mine were never high in the AM .

Phyllis

Nacin - help

OK I need help from anyone who know anything about nicain.

I will summarize my situation

Type 2, A1C - 6.5

Blood sugars 175 - mornings

Lunch - 130

Pre-supper - 125

Before bed - 145

No meds, but synthyroid

PAD - bad leg pain

Started 5 days ago taking Niacin to flush out my arteries and help with the

leg pain and poor circulation in my feet and leg (PAD)

Yesterday I had increased the niacin to 3000mg a day (recommended dosage)

No diet change - under 20 carbs a day and I walked about 3 miles yesterday.

This morning my blood sugar is 290.

I am so upset - beyond words.

Now what I don't know what to do.

Abandom the niacin 0r

Add the meds back in and keep the niacin and wait it out a week. (The meds

make my legs hurt very bad, so this would be rough) or

Take the niacin and no meds, increase the execise and wait it out a week.

What I don't know is if the niacin is burning all the crap out my arteries -

would this be normal to raise my blood sugar for a temporary period.

I know some of you may thing I am crazy, but I am trying to cure myself

without killing myself. So, yes I am taking radical approaches with my

health at the same time being very careful. Both of my doctors (regular and

cardiologist) do recommend niacin, but say they have seen patients have

increase blood sugar, but of course they don't know if this is long term or

short term.

Thanks for any help or suggestions you can give.

Phyllis N

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

To leave this list please go to diabetes-unsubscribe

Hope you come back soon!

[Guest guest]

Thanks other Phyllis (LOL). Believe me I am a whole lot more worried about

the PAD than the diabetes, even though I know they kinda go hand in hand,

but lots of people have PAD that don't have diabetes. The doctor told me

that they will cut my toes and legs off if we don't get this under control.

So I am very dilligent and scarred. The walking or aerobic is suspossed to

help. There sure isn't alot of treatment options, except surgery, which in

my case they say probably won't help or amputation. Please keep me advised.

I appreciate your comments, because I am sure you understand. Thanks again.

The other Phyllis N

>Poor circulation is what caused me to loose my second leg above the knee so

>I would be very concerned about PAD and be concerned about my BS readings

>and why they are so high in the AM, mine were never high in the AM .

>Phyllis

> Nacin - help

>

>

>

>

>

>OK I need help from anyone who know anything about nicain.

>

>I will summarize my situation

>Type 2, A1C - 6.5

>Blood sugars 175 - mornings

>Lunch - 130

>Pre-supper - 125

>Before bed - 145

>No meds, but synthyroid

>PAD - bad leg pain

>

>Started 5 days ago taking Niacin to flush out my arteries and help with the

>leg pain and poor circulation in my feet and leg (PAD)

>

>Yesterday I had increased the niacin to 3000mg a day (recommended dosage)

>

>No diet change - under 20 carbs a day and I walked about 3 miles yesterday.

>

>This morning my blood sugar is 290.

>

>I am so upset - beyond words.

>

>Now what I don't know what to do.

>

>Abandom the niacin 0r

>Add the meds back in and keep the niacin and wait it out a week. (The meds

>make my legs hurt very bad, so this would be rough) or

>Take the niacin and no meds, increase the execise and wait it out a week.

>

>

>What I don't know is if the niacin is burning all the crap out my arteries

>-

>would this be normal to raise my blood sugar for a temporary period.

>

>I know some of you may thing I am crazy, but I am trying to cure myself

>without killing myself. So, yes I am taking radical approaches with my

>health at the same time being very careful. Both of my doctors (regular and

>cardiologist) do recommend niacin, but say they have seen patients have

>increase blood sugar, but of course they don't know if this is long term or

>short term.

>

>Thanks for any help or suggestions you can give.

>

>Phyllis N

>

>

>

>

>

>_________________________________________________________________

>Join the world’s largest e-mail service with MSN Hotmail.

>http://www.hotmail.com

>

>

>

>To leave this list please go to diabetes-unsubscribe

> Hope you come back soon!

>

>

[Guest guest]

Let me just say Phyllis that when I was first diagnosed they made it seem

like I better get ready to have my foot taken off and it's not like that at

all. Sometimes Drs. in particular HMO doctors go straight for the worst

case scenario. Like I described I have it mildly in my left big toe and

moderately in the middle of my foot but my Dr. told me surgery is not

necessary and I shouldn't have any problems UNLESS I lose control of my

sugars over a period of time etc. So I " m going with that. I'm not going

to say that one day WAYYYYY in the future it might not get worse. I do

know losing all this weight and taking that pressure off helps. I make

sure I don't wear anything super tight on that leg and I do exercise it.

So I'm not going mentally down the " Oh it's gonna come off road " . I " m

going down the " That is one cute summer sandle " road myself, lol

" Phyllis Norwood "

<pnorwood1@... To:

diabetes

om> cc:

Subject: Re: help

04/14/2002 05:11 PM

Please respond to

diabetes

Thanks other Phyllis (LOL). Believe me I am a whole lot more worried about

the PAD than the diabetes, even though I know they kinda go hand in hand,

but lots of people have PAD that don't have diabetes. The doctor told me

that they will cut my toes and legs off if we don't get this under control.

So I am very dilligent and scarred. The walking or aerobic is suspossed to

help. There sure isn't alot of treatment options, except surgery, which in

my case they say probably won't help or amputation. Please keep me advised.

I appreciate your comments, because I am sure you understand. Thanks again.

The other Phyllis N

>Poor circulation is what caused me to loose my second leg above the knee

so

>I would be very concerned about PAD and be concerned about my BS readings

>and why they are so high in the AM, mine were never high in the AM .

>Phyllis

> Nacin - help

>

>

>

>

>

>OK I need help from anyone who know anything about nicain.

>

>I will summarize my situation

>Type 2, A1C - 6.5

>Blood sugars 175 - mornings

>Lunch - 130

>Pre-supper - 125

>Before bed - 145

>No meds, but synthyroid

>PAD - bad leg pain

>

>Started 5 days ago taking Niacin to flush out my arteries and help with

the

>leg pain and poor circulation in my feet and leg (PAD)

>

>Yesterday I had increased the niacin to 3000mg a day (recommended dosage)

>

>No diet change - under 20 carbs a day and I walked about 3 miles

yesterday.

>

>This morning my blood sugar is 290.

>

>I am so upset - beyond words.

>

>Now what I don't know what to do.

>

>Abandom the niacin 0r

>Add the meds back in and keep the niacin and wait it out a week. (The meds

>make my legs hurt very bad, so this would be rough) or

>Take the niacin and no meds, increase the execise and wait it out a week.

>

>

>What I don't know is if the niacin is burning all the crap out my arteries

>-

>would this be normal to raise my blood sugar for a temporary period.

>

>I know some of you may thing I am crazy, but I am trying to cure myself

>without killing myself. So, yes I am taking radical approaches with my

>health at the same time being very careful. Both of my doctors (regular

and

>cardiologist) do recommend niacin, but say they have seen patients have

>increase blood sugar, but of course they don't know if this is long term

or

>short term.

>

>Thanks for any help or suggestions you can give.

>

>Phyllis N

>

>

>

>

>

>_________________________________________________________________

>Join the world's largest e-mail service with MSN Hotmail.

>http://www.hotmail.com

>

>

>

>To leave this list please go to diabetes-unsubscribe

> Hope you come back soon!

>

>

[Guest guest]

Cute summer sandles, boy what I wouldn't give to wear them, I still have a

pair in my closet and have been meaning to give them to my sister, but hey I

am a jewlery person now, gold on one hand silver on the other ;-)

Phyllis

Nacin - help

>

>

>

>

>

>OK I need help from anyone who know anything about nicain.

>

>I will summarize my situation

>Type 2, A1C - 6.5

>Blood sugars 175 - mornings

>Lunch - 130

>Pre-supper - 125

>Before bed - 145

>No meds, but synthyroid

>PAD - bad leg pain

>

>Started 5 days ago taking Niacin to flush out my arteries and help with

the

>leg pain and poor circulation in my feet and leg (PAD)

>

>Yesterday I had increased the niacin to 3000mg a day (recommended dosage)

>

>No diet change - under 20 carbs a day and I walked about 3 miles

yesterday.

>

>This morning my blood sugar is 290.

>

>I am so upset - beyond words.

>

>Now what I don't know what to do.

>

>Abandom the niacin 0r

>Add the meds back in and keep the niacin and wait it out a week. (The meds

>make my legs hurt very bad, so this would be rough) or

>Take the niacin and no meds, increase the execise and wait it out a week.

>

>

>What I don't know is if the niacin is burning all the crap out my arteries

>-

>would this be normal to raise my blood sugar for a temporary period.

>

>I know some of you may thing I am crazy, but I am trying to cure myself

>without killing myself. So, yes I am taking radical approaches with my

>health at the same time being very careful. Both of my doctors (regular

and

>cardiologist) do recommend niacin, but say they have seen patients have

>increase blood sugar, but of course they don't know if this is long term

or

>short term.

>

>Thanks for any help or suggestions you can give.

>

>Phyllis N

>

>

>

>

>

>_________________________________________________________________

>Join the world's largest e-mail service with MSN Hotmail.

>http://www.hotmail.com

>

>

>

>To leave this list please go to diabetes-unsubscribe

> Hope you come back soon!

>

>

[Guest guest]

Bless your heart JoAnn,

I hear you loud and clear. 1995 is about the time I noticed big changes in my

Don.

We have been through all of it. I've cried, laughed and asked questions on this

list. I got answers , Always. Some I could use and some I found didn't work for

my Darling Don.

What I did learn through this List was Seroquel worked like a charm.

One must cut out most of the other medications, and go with Seroquel, and maybe

one Like Aricept for cognition. And Zoloft 150mg for his depression, (which

showed up in agression).

But, once Seroquel was instituted at my insistance, up to 50mg, my Don slept at

night, and that was a blessing beyond belief! I gave it at night. And the

Aricept 10mg in the mornings. That's different from on the prescription. But, I

knew what worked on Don.

All sleep aids were no good for Don. And I will say this not all patients can

take Seroquel. No two patients are alike.

I am glad you have your Fred back. What ever works best for them is best for us,

the caregiver.

You have been worrying with this a long time. Don wasn't diagnosed until 2005,

and that was with Alzheimer's. But, when that doctor gave Don the wrong

medication, I found another Doctor right away. I had to wean Don off the

Risperdone that nearly killed him with his bad heart.

The new Doctor diagnosed LBD right away in early '06.

MY Don passed away April 22.2010 Just short of a month ago. The beating a

caregiver takes leaves it's toll. Please get help if you possibly can.

I will write on here once in a while, but I can't promise to write off line as

it is too hard for me to talk to many private messages.

I too, have some serious health problems and am not up to writing all the time.

Love a lot,

Imogene

>

> We have been dealing with the behaviors of lewy since 97, but doctors kept

> finding all kinds of reasons [low oxygen, Alzheimer's, too much medication,

> etc.] that would eventually be fixed. I kept waiting for my Fred to be OK.

> Finally he was diagnosed with lewy bodies about a year ago. Since then he

> has had 3 major strokes, has a dead spot in his brain, and has seizures. He

> does not have Parkinson's, though has the behaviors sometimes. The docs here

> in our small town tell me to go on the computer for info. So I have learned

> to do facebook and email, kind of. We finally saw a neurologist 2 weeks ago.

> We go again Thurs. I asked for a sleeping pill because right now we are

> sleeping 15 min. and then up hallucinating for an hour or two. We are doing

> really well if we get 3 hours a night. He prescribed Zyprexa which does

> nothing. So many pills make him worse. At least this one did nothing. We are

> so much better since the diagnoses and the computer because I quit fighting

> with him all the time. I thought he was making stuff up just to annoy me or

> get attention. We were hating each other and the doctors were blaming us.

> After almost 30 years the lewy bodies had almost done us in. Now I have him

> back. I just had to get that he really was no longer the man who could fix

> everything, but he's still my Fred. On his good times we still laugh

> together. I desperately need advice on behaviors though. Anyone who is

> willing to help, please contact me. If anyone just needs an extra place to

> vent, I'm thrilled with that, too. I was alone with this horrible thing for

> years. We have had every symptom and behavior I have ever heard of with lbd

> and no clue anybody else was having them too. Just to know others are there

> helps my sanity. Thank you everyone for caring enough to share.

>

>

>

[Guest guest]

joanne,

i am sharon,  my now hubby and i took care of my daddy from jan 2003-utnil he

died 9/25/05.

wehn we first moved here, daddy was mobile and got aroudn and we could do things

like go out for dinner, go shopping together. go to the beach and leave daddy

alone, adn then we ewnt out of town, back to tenn to finsih getting sutff out of

my house to complete the moved down here and that was the last time we could

lleave addday by hijmself at all.  my best frien  jennie checked on him and

brought him dinner and made him lunch for hte next day. but wehn we got back his

hallucinatinos mostly of the kgb or cia out to kill me to get to him.  he was

petrified. we learnted to tell him we would be home 30 min to an hour later and

be home earlier and not have him so stressed. 

 

daddy also had alot of dr jeiyll and mr hyde moments, were one minutes he was

nice and fun adn happy go lucky like usual and then instead he would be ugly

hateful, vinditictvie and even sually very inappropriate.

 

  very very scary for all of us and very very upsetting too.

 

this group is very good, feel free to vent, scream yell, cry, laugh, listne

talk, about nathing on your mind.  

 

by the way i am second polssilby 3rd genertaion lbd. only reason i am dianosted

as early stages i am in ids beacuse i sm going to same docs as my dad did and

they can compare his we dont know what is wrong wtih you swcans form years

before diagnosis to my currents scansa nd sees taht they are almsot

identialca.  so i am diagnsoied taht way,  

take care an dhugs. sharon  

I am the daughter of Leonard whom was diagnosed in May 2004 and  he died of

complicatons *blood pressure started dropping and wouldn't recover* on Sept 25,

2005. He had bad case of Dr Jekyl/Mr Hyde scenarios. He was showing

hallucinations and falling issues since prior to 1994. We moved in to take care

of him Jan 19, 2003 and still live in his house. And in feb 2009, i have been

diagonosed with 99% probability of lbd. Hoping that a cure or treatment will be

found before it's too late for me.

Subject: HELP

To: " LBDcare " <LBDcaregivers >

Date: Monday, May 17, 2010, 12:09 PM

 

We have been dealing with the behaviors of lewy since 97, but doctors kept

finding all kinds of reasons [low oxygen, Alzheimer's, too much medication,

etc.] that would eventually be fixed. I kept waiting for my Fred to be OK.

Finally he was diagnosed with lewy bodies about a year ago. Since then he

has had 3 major strokes, has a dead spot in his brain, and has seizures. He

does not have Parkinson's, though has the behaviors sometimes. The docs here

in our small town tell me to go on the computer for info. So I have learned

to do facebook and email, kind of. We finally saw a neurologist 2 weeks ago.

We go again Thurs. I asked for a sleeping pill because right now we are

sleeping 15 min. and then up hallucinating for an hour or two. We are doing

really well if we get 3 hours a night. He prescribed Zyprexa which does

nothing. So many pills make him worse. At least this one did nothing. We are

so much better since the diagnoses and the computer because I quit fighting

with him all the time. I thought he was making stuff up just to annoy me or

get attention. We were hating each other and the doctors were blaming us.

After almost 30 years the lewy bodies had almost done us in. Now I have him

back. I just had to get that he really was no longer the man who could fix

everything, but he's still my Fred. On his good times we still laugh

together. I desperately need advice on behaviors though. Anyone who is

willing to help, please contact me. If anyone just needs an extra place to

vent, I'm thrilled with that, too. I was alone with this horrible thing for

years. We have had every symptom and behavior I have ever heard of with lbd

and no clue anybody else was having them too. Just to know others are there

helps my sanity. Thank you everyone for caring enough to share.

[Guest guest]

Sharon when you mention inappropriate behavior. I remember you saying how

your Dad had " sex " things that were very inappropriate. I wonder if that

is the norm with LBD patients? Our LO's that go through that is so awful

and embarrassing, but we KNOW its NOT them at all. My Mom when I visit her

at the N.H., still has some kind of " sex " thing to tell me about. Some

days its about how her roommate got raped or how there are prostitutes down

the hall, just ugly things like this, I have no idea where her brain comes up

with such sick things, but I ignore everything, and just say, " oh no, that

is awful " , and she will look at me out of her eyes where sometimes are so

very distant, and agree with me, how awful it is. What's strange is that

here at my house where she lived, she would go around all day long kissing

the pillows, kissing the TV, or lie in bed and laugh and talk love to her

" make believe " man of the day. Up at the N.H., I'm not there much at all, as

she seems to just sleep all the time up there, but I haven't walking in on

her where she is kissing anything. Do you think she realizes the

atmosphere is completely different than home and she don't want to do that up

there?

I do know that her make believe boyfriend, friend, husband from

day to day, sleeps in that bed with her and they talk all the time, but since

he is going to " prison " , make believe of course, she won't have no one to

talk to, hope that don't drive her crazy.

I am going up there this morning before I go get my colonoscopy to check

on her, she refused her exray yesterday on her foot.

Take care, and love your posts,

In a message dated 5/19/2010 6:10:28 A.M. Central Daylight Time,

ladyandhertramp@... writes:

joanne,

i am sharon, my now hubby and i took care of my daddy from jan 2003-utnil

he died 9/25/05.

wehn we first moved here, daddy was mobile and got aroudn and we could do

things like go out for dinner, go shopping together. go to the beach and

leave daddy alone, adn then we ewnt out of town, back to tenn to finsih

getting sutff out of my house to complete the moved down here and that was the

last time we could lleave addday by hijmself at all. my best frien jennie

checked on him and brought him dinner and made him lunch for hte next day.

but wehn we got back his hallucinatinos mostly of the kgb or cia out to

kill me to get to him. he was petrified. we learnted to tell him we would be

home 30 min to an hour later and be home earlier and not have him so

stressed.

daddy also had alot of dr jeiyll and mr hyde moments, were one minutes he

was nice and fun adn happy go lucky like usual and then instead he would be

ugly hateful, vinditictvie and even sually very inappropriate.

very very scary for all of us and very very upsetting too.

this group is very good, feel free to vent, scream yell, cry, laugh,

listne talk, about nathing on your mind.

by the way i am second polssilby 3rd genertaion lbd. only reason i am

dianosted as early stages i am in ids beacuse i sm going to same docs as my dad

did and they can compare his we dont know what is wrong wtih you swcans

form years before diagnosis to my currents scansa nd sees taht they are

almsot identialca. so i am diagnsoied taht way,

take care an dhugs. sharon

I am the daughter of Leonard whom was diagnosed in May 2004 and he died

of complicatons *blood pressure started dropping and wouldn't recover* on

Sept 25, 2005. He had bad case of Dr Jekyl/Mr Hyde scenarios. He was showing

hallucinations and falling issues since prior to 1994. We moved in to take

care of him Jan 19, 2003 and still live in his house. And in feb 2009, i

have been diagonosed with 99% probability of lbd. Hoping that a cure or

treatment will be found before it's too late for me.

From: JoAnn <_joanninklamath@..._

(mailto:joanninklamath@...) >

Subject: HELP

To: " LBDcare " <_LBDcaregivers _

(mailto:LBDcaregivers ) >

Date: Monday, May 17, 2010, 12:09 PM

We have been dealing with the behaviors of lewy since 97, but doctors kept

finding all kinds of reasons [low oxygen, Alzheimer's, too much medication,

etc.] that would eventually be fixed. I kept waiting for my Fred to be OK.

Finally he was diagnosed with lewy bodies about a year ago. Since then he

has had 3 major strokes, has a dead spot in his brain, and has seizures. He

does not have Parkinson's, though has the behaviors sometimes. The docs

here

in our small town tell me to go on the computer for info. So I have learned

to do facebook and email, kind of. We finally saw a neurologist 2 weeks

ago.

We go again Thurs. I asked for a sleeping pill because right now we are

sleeping 15 min. and then up hallucinating for an hour or two. We are doing

really well if we get 3 hours a night. He prescribed Zyprexa which does

nothing. So many pills make him worse. At least this one did nothing. We

are

so much better since the diagnoses and the computer because I quit fighting

with him all the time. I thought he was making stuff up just to annoy me or

get attention. We were hating each other and the doctors were blaming us.

After almost 30 years the lewy bodies had almost done us in. Now I have him

back. I just had to get that he really was no longer the man who could fix

everything, but he's still my Fred. On his good times we still laugh

together. I desperately need advice on behaviors though. Anyone who is

willing to help, please contact me. If anyone just needs an extra place to

vent, I'm thrilled with that, too. I was alone with this horrible thing for

years. We have had every symptom and behavior I have ever heard of with lbd

and no clue anybody else was having them too. Just to know others are there

helps my sanity. Thank you everyone for caring enough to share.

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

linda,

the 'sex' thing is actaully quite easily explained, 

with my dad, and myself unfortunately and with many lbd'ers, teh frontal lobe

part of the brain is where the shrinkage or changes occur  this part of the

brain is your moral part of the brain, and inhibitions. where you know right

from wrong, where you have teh abiltiy to be tactful in your comments and word

choices. so when this part of the brain is damaged or not firing problperly ,

all your inhibitoins and aiblities to know right and wrong is gone. and if that

is gone  you say very infpporapirte things, or do bad things, and the rest of

your brain may know that this is bad, liek daddy

would say the 'little man in my head made e do that .  (that is what he called

lbd, he knew th disease he had, had a mans name in it, so it became the little

man in his head.  ') he suspected or knew he id something wrong, but his

ability to stop doing it was gone. and taht to me would be hell.  to know that

you arent supposed to be talking like a sailor in stead of a lady but you just

cant stop yourself .  i dread those days, hope they dont come for a looooong

time.    k

 

hugs. sharon

I am the daughter of Leonard whom was diagnosed in May 2004 and  he died of

complicatons *blood pressure started dropping and wouldn't recover* on Sept 25,

2005. He had bad case of Dr Jekyl/Mr Hyde scenarios. He was showing

hallucinations and falling issues since prior to 1994. We moved in to take care

of him Jan 19, 2003 and still live in his house. And in feb 2009, i have been

diagonosed with 99% probability of lbd. Hoping that a cure or treatment will be

found before it's too late for me.

From: JoAnn <_joanninklamath@..._

(mailto:joanninklamath@...) >

Subject: HELP

To: " LBDcare " <_LBDcaregivers _

(mailto:LBDcaregivers ) >

Date: Monday, May 17, 2010, 12:09 PM

We have been dealing with the behaviors of lewy since 97, but doctors kept

finding all kinds of reasons [low oxygen, Alzheimer's, too much medication,

etc.] that would eventually be fixed. I kept waiting for my Fred to be OK.

Finally he was diagnosed with lewy bodies about a year ago. Since then he

has had 3 major strokes, has a dead spot in his brain, and has seizures. He

does not have Parkinson's, though has the behaviors sometimes. The docs

here

in our small town tell me to go on the computer for info. So I have learned

to do facebook and email, kind of. We finally saw a neurologist 2 weeks

ago.

We go again Thurs. I asked for a sleeping pill because right now we are

sleeping 15 min. and then up hallucinating for an hour or two. We are doing

really well if we get 3 hours a night. He prescribed Zyprexa which does

nothing. So many pills make him worse. At least this one did nothing. We

are

so much better since the diagnoses and the computer because I quit fighting

with him all the time. I thought he was making stuff up just to annoy me or

get attention. We were hating each other and the doctors were blaming us.

After almost 30 years the lewy bodies had almost done us in. Now I have him

back. I just had to get that he really was no longer the man who could fix

everything, but he's still my Fred. On his good times we still laugh

together. I desperately need advice on behaviors though. Anyone who is

willing to help, please contact me. If anyone just needs an extra place to

vent, I'm thrilled with that, too. I was alone with this horrible thing for

years. We have had every symptom and behavior I have ever heard of with lbd

and no clue anybody else was having them too. Just to know others are there

helps my sanity. Thank you everyone for caring enough to share.

[Guest guest]

Dear Joan,

Im so sorry to hear about your husband.This disease is so unpredictable and so

scary.Welcome to our group and please know that you are not alone.There are many

here who are going through this journey or whos loved ones journey has ended and

together we will help eachother.Heartfelt best wishes Ron

>

> We have been dealing with the behaviors of lewy since 97, but doctors kept

> finding all kinds of reasons [low oxygen, Alzheimer's, too much medication,

> etc.] that would eventually be fixed. I kept waiting for my Fred to be OK.

> Finally he was diagnosed with lewy bodies about a year ago. Since then he

> has had 3 major strokes, has a dead spot in his brain, and has seizures. He

> does not have Parkinson's, though has the behaviors sometimes. The docs here

> in our small town tell me to go on the computer for info. So I have learned

> to do facebook and email, kind of. We finally saw a neurologist 2 weeks ago.

> We go again Thurs. I asked for a sleeping pill because right now we are

> sleeping 15 min. and then up hallucinating for an hour or two. We are doing

> really well if we get 3 hours a night. He prescribed Zyprexa which does

> nothing. So many pills make him worse. At least this one did nothing. We are

> so much better since the diagnoses and the computer because I quit fighting

> with him all the time. I thought he was making stuff up just to annoy me or

> get attention. We were hating each other and the doctors were blaming us.

> After almost 30 years the lewy bodies had almost done us in. Now I have him

> back. I just had to get that he really was no longer the man who could fix

> everything, but he's still my Fred. On his good times we still laugh

> together. I desperately need advice on behaviors though. Anyone who is

> willing to help, please contact me. If anyone just needs an extra place to

> vent, I'm thrilled with that, too. I was alone with this horrible thing for

> years. We have had every symptom and behavior I have ever heard of with lbd

> and no clue anybody else was having them too. Just to know others are there

> helps my sanity. Thank you everyone for caring enough to share.

>

>

>