New to the Group

[Guest guest]

---Hi and welcome.

I am also diabetic for the last 10 years. DOn't have the leg prob

but keep my legs elevated on a pillow at night, well as much as they

stay on the pillow. It helps stop any ankle swelling. It might help

you but am not sure. Can't hurt to try. Laying down and hurting more

may be caused by the circulation prob in a prone position. Maybe

someone else will be able to help more with this.

Try to eat less carbs, I found that by omitting pasta and potatoes

helped keep the sugar down. Also bread can raise mine so I don't eat

much of that anymore and look only for the lowest amount per slice in

the wheat bread. Pepperidge Farm thin wheat is only 9 carbs I

believe per slice.

Drink water as Eunice has just recommended, water helps to flush out

the fat cells.

Exercise as much as possible. Even housework is exercise. Walking

after meals helps the blood sugar level also as well as helping us to

lose weight.

Keep a journal of what you eat as well as blood sugar level. Helps

the Dr. to see what is going on and helps you to recognize any

problem areas.

You will get a lot of good info in here and also the archives are

full of valuable information. Just type in a keyword in the space

provided on the group site and messages will come up with that in

it.

Madge

In diabetes@y..., " lindab_36732 " <lindab_36732@y...> wrote:

> Hi, Im LInda and new to the group. I have been a diabetic for 10

> years and have been under a non caring Dr.Have found a new one and

> find out Im in a little trouble. I have been in denial and eating

> everything. I know find I have neuropathy in my feet and legs. He

is

> treating me with Neurotin. Does anyone else have the problem and do

> you know of any other kind of treatment? Also can I walk with this

> problem? I need to exercise, need to lose 50 pounds. I have

> dramatically changed my way of eating and not in denial anymore.

> Would you believe I am a nurse? Any suggestions would be

> appreciated. Why does this neuropathy hurt more at night?

[Guest guest]

Check out:

http://www.neuropathy.org/index.asp

http://www.niddk.nih.gov/health/diabetes/pubs/neuro/neuro.htm

http://www.neurologychannel.com/neuropathy/

I have been diagnosed with diabetes for about 4 years - probably had

high glucose for 10 years. Neuropathy has come and gone, both

peripheral and mono. I found myself in the doctor's office and hospital

3 times trying to find kidney stones and epididymitas - all the symptoms

were there but the scans could not find anything. Then I developed numb

spots on my abdomen and over my joints. Then the most weird symptom, I

noticed I was sweating on only one side. i.e. I would get out of the

truck on a warm day and when the wind hit my shirt, it would be cool on

only one side.

I began to notice a burning and itching on my lower legs, especially

when I stood up from bed. To make a long story short...a Neurologist

ran his battery of tests, used colored markers to identify surface areas

of my body with unusual sensitivity (either hyper or hypo) and when he

was done I looked like a bad coloring job on an Easter egg. Shortly

after that, we discovered high blood glucose which led to a diagnosis of

diabetes which led to radical alteration in diet, exercise and

experimenting with various drugs. I'm now using Insulin after the

effects of the drugs seemed to diminish over time.

The good news - most of the neuropathy symptoms have gone away with good

blood sugar control! There are still some spots on my abdomen that have

very little sensation - makes injecting Insulin totally painless!

The bad news - I still have some pain in my lower legs and other muscle

groups when exercising - they give out long before I'm winded or

sweating - kind of like an oxygen deficiency. I need to stop for a few

minutes when climbing several flights of stairs and let my legs

'recharge' then I can continue on. One theory about neuropathy suggests

that the high blood glucose damages the red blood cells and makes them

'brittle' and unable to deliver nutrients to the nerves. I wonder if

this could also prevent good oxygenation to the muscle tissues? Despite

all the wonderments of medical science - there is still a lot of

unknowns out there!

I searched the web to learn about neuropathy and various treatments -

still have a drawer full of nutritional supplements and Capsaicin cream

(Zostrix) - I didn't find any thing that was particularly miraculous.

Good glucose control seems to be the best preventative!

Link Shadley

PO Box 976

Astoria, OR 97103

State phone:

Home Office:

Home FAX:

Cell:

lshadley@...

link.shadley@...

link@...

new to the group

Hi, Im LInda and new to the group. I have been a diabetic for 10

years and have been under a non caring Dr.Have found a new one and

find out Im in a little trouble. I have been in denial and eating

everything. I know find I have neuropathy in my feet and legs. He is

treating me with Neurotin. Does anyone else have the problem and do

you know of any other kind of treatment? Also can I walk with this

problem? I need to exercise, need to lose 50 pounds. I have

dramatically changed my way of eating and not in denial anymore.

Would you believe I am a nurse? Any suggestions would be

appreciated. Why does this neuropathy hurt more at night?

[Guest guest]

Thanks Link for the info,I have noticed a numbness at times in one side of my

face. The pain in my legs are better now. My Glucose levels are better and thats

probably why the pain is better. Fasting blood suger this AM was 107.

from Alabama

Link Shadley wrote: Check out:

http://www.neuropathy.org/index.asp

http://www.niddk.nih.gov/health/diabetes/pubs/neuro/neuro.htm

http://www.neurologychannel.com/neuropathy/

I have been diagnosed with diabetes for about 4 years - probably had

high glucose for 10 years. Neuropathy has come and gone, both

peripheral and mono. I found myself in the doctor's office and hospital

3 times trying to find kidney stones and epididymitas - all the symptoms

were there but the scans could not find anything. Then I developed numb

spots on my abdomen and over my joints. Then the most weird symptom, I

noticed I was sweating on only one side. i.e. I would get out of the

truck on a warm day and when the wind hit my shirt, it would be cool on

only one side.

I began to notice a burning and itching on my lower legs, especially

when I stood up from bed. To make a long story short...a Neurologist

ran his battery of tests, used colored markers to identify surface areas

of my body with unusual sensitivity (either hyper or hypo) and when he

was done I looked like a bad coloring job on an Easter egg. Shortly

after that, we discovered high blood glucose which led to a diagnosis of

diabetes which led to radical alteration in diet, exercise and

experimenting with various drugs. I'm now using Insulin after the

effects of the drugs seemed to diminish over time.

The good news - most of the neuropathy symptoms have gone away with good

blood sugar control! There are still some spots on my abdomen that have

very little sensation - makes injecting Insulin totally painless!

The bad news - I still have some pain in my lower legs and other muscle

groups when exercising - they give out long before I'm winded or

sweating - kind of like an oxygen deficiency. I need to stop for a few

minutes when climbing several flights of stairs and let my legs

'recharge' then I can continue on. One theory about neuropathy suggests

that the high blood glucose damages the red blood cells and makes them

'brittle' and unable to deliver nutrients to the nerves. I wonder if

this could also prevent good oxygenation to the muscle tissues? Despite

all the wonderments of medical science - there is still a lot of

unknowns out there!

I searched the web to learn about neuropathy and various treatments -

still have a drawer full of nutritional supplements and Capsaicin cream

(Zostrix) - I didn't find any thing that was particularly miraculous.

Good glucose control seems to be the best preventative!

Link Shadley

PO Box 976

Astoria, OR 97103

State phone:

Home Office:

Home FAX:

Cell:

lshadley@...

link.shadley@...

link@...

new to the group

Hi, Im LInda and new to the group. I have been a diabetic for 10

years and have been under a non caring Dr.Have found a new one and

find out Im in a little trouble. I have been in denial and eating

everything. I know find I have neuropathy in my feet and legs. He is

treating me with Neurotin. Does anyone else have the problem and do

you know of any other kind of treatment? Also can I walk with this

problem? I need to exercise, need to lose 50 pounds. I have

dramatically changed my way of eating and not in denial anymore.

Would you believe I am a nurse? Any suggestions would be

appreciated. Why does this neuropathy hurt more at night?

[Guest guest]

Hi, ;

A non-caring doctor, that's exactly why I started this

group. I was on Neurontin before my 2 heart

operations, but now am off. I've done much better

since starting cardiac rehab; so can vouch that

exercise (even if it kills me to get out and go) does

help a lot!

-list owner

--- lindab_36732 wrote:

> Hi, Im LInda and new to the group. I have been a

> diabetic for 10

> years and have been under a non caring Dr.Have found

> a new one and

> find out Im in a little trouble. I have been in

> denial and eating

> everything. I know find I have neuropathy in my feet

> and legs. He is

> treating me with Neurotin. Does anyone else have the

> problem and do

> you know of any other kind of treatment? Also can I

> walk with this

> problem? I need to exercise, need to lose 50

> pounds. I have

> dramatically changed my way of eating and not in

> denial anymore.

> Would you believe I am a nurse? Any suggestions

> would be

> appreciated. Why does this neuropathy hurt more at

> night?

>

>

>

>

[Guest guest]

--- NANCY BROTZMAN wrote:

> Hi, ;

> A non-caring doctor, that's exactly why I started

> this

> group. I was on Neurontin before my 2 heart

> operations, but now am off. I've done much better

> since starting cardiac rehab; so can vouch that

> exercise (even if it kills me to get out and go)

> does

> help a lot!

> -list owner

> --- lindab_36732 wrote:

> > Hi, Im LInda and new to the group. I have been a

> > diabetic for 10

> > years and have been under a non caring Dr.Have

> found

> > a new one and

> > find out Im in a little trouble. I have been in

> > denial and eating

> > everything. I know find I have neuropathy in my

> feet

> > and legs. He is

> > treating me with Neurotin. Does anyone else have

> the

> > problem and do

> > you know of any other kind of treatment? Also can

> I

> > walk with this

> > problem? I need to exercise, need to lose 50

> > pounds. I have

> > dramatically changed my way of eating and not in

> > denial anymore.

> > Would you believe I am a nurse? Any suggestions

> > would be

> > appreciated. Why does this neuropathy hurt more at

> > night?

> >

> >

> >

> >

[Guest guest]

In a message dated 2/26/02 9:38:12 AM Eastern Standard Time, B642434@...

writes:

> . My name is

> Barbara Acosta, not b56b66dates.

Hi Barbara,

B56b66dates is your Yahoo ID. I believe you can go into Yahoogroups.com and

edit your membership. Let me know if this does not work.

Eunice

[Guest guest]

In a message dated 2/26/02 9:38:12 AM Eastern Standard Time, B642434@...

writes:

> . Do I reduce my meds on my own over time with diet and exercise

> or do I let my doctor know of my plan

Hi Barbara,

When I was to the point of going off meds, I discussed this with my doctor.

She had me cutting my pill in half. I did this for several weeks, then

because my numbers were getting low, she told me to discontinue meds

altogether. I don't know how others handle it, but in my opinion, I think it

best to discuss it with your doctor before making changes.

Eunice

[Guest guest]

Welcome Barbara and husband,

We're happy you've joined us and hope we can help

you both. Please feel free to share anything you

learn here with your group. We'll be looking for you

to share with us, vent with us when you need to, and

rejoice when your Bg levels go down.

> Hello everyone,

>

> I just joined and I look forward to our time

> together. My name is

> Barbara Acosta, not b56b66dates. :-) Any help on

> how to change that

> (because I have tried) would be appreciated.

>

> My Type 11 Diabetes was diagnosed 13 years ago at

> the age of 54. I

> did not have the classic symptoms of thirst,

> frequent urination, or

> weight loss, etc. I went in after a 5 day bout of

> diarrhea and

> there it was. My biggest weakness is monitoring, I

> am the

> Facilitator of a Suppor Group and I neglect my own

> needs too often.

> Presently, I am taking Glipizide (10mg) twice a day

> and Metformin

> Glucophage (850mg) twice a day. The Metformin was

> upped from 500mg

> (first started a year ago) to 850mg two weeks ago

> because my HGB was

> 7.3 as of 17 Jan.; therefore I want to nip this in

> the bud.

>

> Questions:

> 1. What is the down side of Metformin?

> 2. Do I reduce my meds on my own over time with

> diet and exercise

> or do I let my doctor know of my plan. In other

> words, how have

> others proceeded with this.

>

> My husband is also Type 11 and is on insulin. We

> both attended

> several diabetes education classes last year.

> Knowing what we

> should do and doing it day in and day out is the BIG

> CHALLANGE. I

> have the treadmill which is a great holder of my

> conforter. LOL We

> know about the low carb meal plan and I had a

> dietitian approved one

> I made up. We followed it for 7 months or so with

> good results, then

> slowly we have returned to carb portions that are

> wrong. Oh my!

> what a roller coaster.

>

> Blessings,

> Barbara Acosta

>

>

>

>

[Guest guest]

Welcome Barbara!! We are sorry you had to find us but still glad you did.

You will find all kinds of support and knowledge here esp. when you get your

welcome message from or Donna or ??? It sounds like you are a

typical family. One steps up and others step back. And it sounds like you

are a wonderful daughter. Probably the move did further confuse your mother

but sometimes we have to do what has to be done. You might want to send us a

list of meds your mother is on and there might be suggestions. I hope you

have found a Doctor who is " Lewy Body Savy " (so we say) and whenever a new

drug is started from now on be sure it is started low (dosage) and slow.

Drugs seem to be a big bugaboo for LBD patients. They don't tolerate drugs

the same way an Alzheimer patient might. There is a list on our files which

are drugs to give to an LBD patient. You will find comfort, support,

information and love here. Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

Welcome, Barbara. I really understand your concern about moving your mom

causing more confusion. BUT it sounds like she would not be alive today if you

had not moved her. So, do not feel bad that you moved her but know you did what

is best for her.

I also am probably facing a move and do not look forward to moving my husband

but we do what we HAVE to do.

Lorraine 58, 58

Dallas TX area

>

> Hi, I just found out about this group and am thrilled it exists.  My mom was

diagnosed with Lewy Body Dimentia about two years ago, and the decline since

then seems to be very rapid. She cannot keep a thought in her head, has no

energy to start even the smallest project, is not eating, and sleeps a lot.  We

just saw her neurologist, and I convinced him she needs an anti-depressant.  She

seemed perkier today after taking the medication for only three days, but maybe

that is wishful thinking.  Reading some of your messages, I realize I have it

easy right now.  It is the future I am dreading.

>  

> The biggest problem I have right now is my dad, who gets so frustrated with

mom's forgetfulness.  He is used to being waited on for everything--she has

devoted the last 30 or so years of her life to keeping him alive.  I get caught

in the middle, when he tells me how " stupid " she is being, and she let's me know

how badly she feels.  I have tried to tell him that she will not get better,

that getting mad doesn't do either of them any good, and that he needs to start

taking more responsibility around the house.

>  

> Some of my concern stems from the fact that I moved them from their house of

35 years in New Hampshire, to an independent living facility near me in

Connecticut.  I think I hastened some of her confusion by moving her.  But they

were in great physical danger in New Hampshire where there was no

transportation, very little support, and my dear brother never lifted a finger

to help.  If something went wrong, I was the one my parents called.  If they had

been in New Hampshire this past winter, they would have been without power for

weeks on end.  They would surely have perished.

>  

> Okay, enough rambling.  I am looking forward to the suppor this group offers. 

Now I need to get some sleep because I have a long trip early in the morning,

and a longer afternoon back at work after my field trip. 

>  

> Barbara  

>

>

[Guest guest]

Barbara -

I ditto Lorraine's encouragement regarding the need to move your mom. My brother

and I moved our mom from California to Kansas last November. She was living

alone and had dropped an enormous amount of weight due to not eating. She was

hallucinating terribly, hadn't bathed for a long time--many things were going

on. It did make her worse for a time after we moved her--change is not something

those with LBD can handle well. Now that she is settled with a routine, good

food, a good schedule of meds and wonderful care in a Nursing Home, she is doing

SO much better. So, hang in there. Yes, each day can be a new challenge, but you

will learn so much from this group. Keep life simple and as quiet as you can for

your mom. One thing that really helps my mom is that I have made signs for her

walls to remind her of certain things; such as mealtimes, the days and times she

gets a shower. There aren't too many because that would be too confusing, but a

few of these give her some control--she can look at the sign to jog her memory.

I also put nail polish on her volume down button on her TV remote and then on a

sticky note next to her chair I wrote polish---down. For now that is helping

her. You'll learn little tricks and helps like this and be prepared to be

flexible. What helps now may not later. Then you'll think of something else!

You have a lot on your plate; I remember well the feelings of being overwhelmed

and upset in the beginning. Those feelings come and go now, but they do lessen.

You are doing your best and that's all you can do. Before sending this I will

say a prayer for you and your family--God is faithful and will hold you up.

Take care of yourself and use this group for venting, asking questions, whatever

you need.

Katy in KS, daughter to Jill

> >

> > Hi, I just found out about this group and am thrilled it exists.  My mom was

diagnosed with Lewy Body Dimentia about two years ago, and the decline since

then seems to be very rapid. She cannot keep a thought in her head, has no

energy to start even the smallest project, is not eating, and sleeps a lot.  We

just saw her neurologist, and I convinced him she needs an anti-depressant.  She

seemed perkier today after taking the medication for only three days, but maybe

that is wishful thinking.  Reading some of your messages, I realize I have it

easy right now.  It is the future I am dreading.

> >  

> > The biggest problem I have right now is my dad, who gets so frustrated with

mom's forgetfulness.  He is used to being waited on for everything--she has

devoted the last 30 or so years of her life to keeping him alive.  I get caught

in the middle, when he tells me how " stupid " she is being, and she let's me know

how badly she feels.  I have tried to tell him that she will not get better,

that getting mad doesn't do either of them any good, and that he needs to start

taking more responsibility around the house.

> >  

> > Some of my concern stems from the fact that I moved them from their house of

35 years in New Hampshire, to an independent living facility near me in

Connecticut.  I think I hastened some of her confusion by moving her.  But they

were in great physical danger in New Hampshire where there was no

transportation, very little support, and my dear brother never lifted a finger

to help.  If something went wrong, I was the one my parents called.  If they had

been in New Hampshire this past winter, they would have been without power for

weeks on end.  They would surely have perished.

> >  

> > Okay, enough rambling.  I am looking forward to the suppor this group

offers.  Now I need to get some sleep because I have a long trip early in the

morning, and a longer afternoon back at work after my field trip. 

> >  

> > Barbara  

> >

> >

[Guest guest]

Hi Barbara,

A big warm Texas welcome! The answers are here. Just fire away with any

questions you have. Help will come. Even some you didn't ask for. Use the

help that suits your needs, and don't worry about the excess. We answer

according to our experiences, and some research we have done.

I went through the same thing you are experiencing with your parents. But,

my experience was with my in-laws. After hinting, and ignoring them for a

long time, I just flat out told them I couldn't take it, and I told them

that I refused to take sides.

I was caring for Don's Mother. I told them to work out what was bothering

them between themselves. They stopped coming to me.

Yes, dear, your mother would have gotten more confused even if you had

moved her to your home. Change of place is very hard on them. I am sure both

of your parents feel lost without their home. They may even be homesick.

But, when it is for their safety we have to do what is necessary. They are

having trouble adjusting. That is one reason for the bickering, and fault

finding. Your father may need an anti-depressant also. In time they will

adjust.

They are going through a lot, and he doesn't understand that your mother

is not the same. With one person doing all the care is a pattern both of

them cultivated. So now they don't know how to handle it, and all the other

changes taking place.

Some of us have had a difficult time in the beginning of LBD understanding

one thing and that is that sometimes they understand, and other times they

don't. Sometimes a person even doubts the Loved One has LBD. This is so

especially with a mate.

When the disease progresses with your Mother then your Dad will come to

accept it, and he will take on more responsibility. He will be forced to.

What medicines is your Mother on? My Don is on Aricept and Seroquel, along

with a fist full of heart medication.

Hang in there Barbara, The beginning is rough as you have already found

out. But,

many things now will have worked themselves out, and new things will take

their place. Yes, it is a horrible disease and it is the whole family's

disease, as it affects us deeply.

Take it slow and in stride, as you will need all your reserve and then

some.

This list is warm and loving, and very helpful. I am sure you will find it

so. There is no bickering or unkindness. and Donna are our List

moderators. They do a wonderful job. has done a lot to produce a

fine library for us, also.

Again, a loving warm welcome.

Love with a smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

And then, with LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 9/19/2009 12:23:07 A.M. Central Daylight Time,

barbara_austen@... writes:

Hi, I just found out about this group and am thrilled it exists. My mom

was diagnosed with Lewy Body Dimentia about two years ago, and the decline

since then seems to be very rapid. She cannot keep a thought in her head,

has no energy to start even the smallest project, is not eating, and sleeps a

lot. We just saw her neurologist, and I convinced him she needs an

anti-depressant. She seemed perkier today after taking the medication for only

three days, but maybe that is wishful thinking. Reading some of your

messages, I realize I have it easy right now. It is the future I am dreading.

The biggest problem I have right now is my dad, who gets so frustrated

with mom's forgetfulness. He is used to being waited on for everything--she

has devoted the last 30 or so years of her life to keeping him alive. I get

caught in the middle, when he tells me how " stupid " she is being, and she

let's me know how badly she feels. I have tried to tell him that she will

not get better, that getting mad doesn't do either of them any good, and

that he needs to start taking more responsibility around the house.

Some of my concern stems from the fact that I moved them from their house

of 35 years in New Hampshire, to an independent living facility near me in

Connecticut. I think I hastened some of her confusion by moving her. But

they were in great physical danger in New Hampshire where there was no

transportation, very little support, and my dear brother never lifted a finger

to help. If something went wrong, I was the one my parents called. If

they had been in New Hampshire this past winter, they would have been without

power for weeks on end. They would surely have perished.

Okay, enough rambling. I am looking forward to the suppor this group

offers. Now I need to get some sleep because I have a long trip early in the

morning, and a longer afternoon back at work after my field trip.

Barbara

[Guest guest]

Hi Barbara,

It is better that you moved your parents earlier in your Mom's disease than

later. It just gets harder on our LOs the further along they are.

Hugs and prayers,

Joan

>

> Hi, I just found out about this group and am thrilled it exists.  My mom was

diagnosed with Lewy Body Dimentia about two years ago, and the decline since

then seems to be very rapid. She cannot keep a thought in her head, has no

energy to start even the smallest project, is not eating, and sleeps a lot.  We

just saw her neurologist, and I convinced him she needs an anti-depressant.  She

seemed perkier today after taking the medication for only three days, but maybe

that is wishful thinking.  Reading some of your messages, I realize I have it

easy right now.  It is the future I am dreading.

>  

> The biggest problem I have right now is my dad, who gets so frustrated with

mom's forgetfulness.  He is used to being waited on for everything--she has

devoted the last 30 or so years of her life to keeping him alive.  I get caught

in the middle, when he tells me how " stupid " she is being, and she let's me know

how badly she feels.  I have tried to tell him that she will not get better,

that getting mad doesn't do either of them any good, and that he needs to start

taking more responsibility around the house.

>  

> Some of my concern stems from the fact that I moved them from their house of

35 years in New Hampshire, to an independent living facility near me in

Connecticut.  I think I hastened some of her confusion by moving her.  But they

were in great physical danger in New Hampshire where there was no

transportation, very little support, and my dear brother never lifted a finger

to help.  If something went wrong, I was the one my parents called.  If they had

been in New Hampshire this past winter, they would have been without power for

weeks on end.  They would surely have perished.

>  

> Okay, enough rambling.  I am looking forward to the suppor this group offers. 

Now I need to get some sleep because I have a long trip early in the morning,

and a longer afternoon back at work after my field trip. 

>  

> Barbara  

>

>

[Guest guest]

Hi Pat, a big warm Texas welcome. (No you don't need the warm part)

Yes, from my experience with my Dear Don there is a problem between the

eyes and the brain. He has complained about not being able to see since the

beginning of his journey with LBD.

If your MIL was a reader, then it may be more difficult to adjust to

having to give it up. I pity you in this situation. If she could read she would

have something to do.

As it is, she will have to adjust to a new place of residence, not being

able to read, as well a the curse of LBD. And you are left to have to help

her through all of this, while you have a curse of your own with hot flashes.

( I started to say, " you are left holding the bag, " and the thought

flashed through my mind " Left holding the old bag. " That isn't nice, as she may

be a dear MIL like my first one was. Make a big smile with your teeth

showing)

Hot flashes are very uncomfortable. I have them to this day with my bad

lungs. So I pity you having to handle all that is on your plate.

How does one smile in the face of all the trouble you are facing? Let me

tell you it " ain't " easy. But, that will be your safety net if you can

maintain a sense of humor, as well as love. Lots of it!

I hope you can find large print books at your library for her. That may

help. Anything, just anything, to keep her happy, and out of your hair as

much as possible. There is nothing worse than having to care for someone that

demands your full attention all the time, and believe me that can drive you

stir crazy.

Best to you dear Pat. Keep on with the questions. We are here to help

each other with love. This is the best List I have ever been on. And I

attribute that to

our precious Moderators, Donna, and , as well as the fact that we

are all in the same boat together, and need each other.

Love with a smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Incorrect diagnoses of AD

in 2005.

A correct diagnosis of LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 11/8/2009 5:23:44 A.M. Central Standard Time,

patst@... writes:

Hi everyone, I'm so glad I found this group. My mother-in-law moved in 4

months ago. I have a lot of question but right now its about vision. I took

her for eye surgery and she had cataracts taken out of both eyes. And had

macular degeneration in the left. She got a new script for glasses and was

told everything was good. But she still cant see.Could there be a problem

between her eyes and her brain communicating?She has been a reader all her

life and if she could just sit and read a book she would be so happy. She

wants to speak for herself and wont allow me to question the doctor too much,

I write notes to him but its hard to get everything into one visit. Has

anyone else had this problem. My next big problem is she's hot then she's

cold. we live in Mich and getting ready for winter, I am going through

menopause and cant stand the heat. hehe Any advice there?

Thank you and I look forward to learning and sharing with this group.

Pat

[Guest guest]

Pat, welcome to the group. You will learn alot from this group and have a

sou;nding board when you need it.  My husband, Pete, went through the same

problems.  He never had surgury but always instisted his glasses needed

changing.  Finally the neurologist has helped me convince him it has to do lack

of connections in the mind. We live in MN so I keep a pair of jersey gloves by

my husbands chair when his hand are cold.

________________________________

To: LBDcaregivers

Sent: Sun, November 8, 2009 2:47:03 AM

Subject: New to the group

 

Hi everyone, I'm so glad I found this group. My mother-in-law moved in 4 months

ago. I have a lot of question but right now its about vision. I took her for eye

surgery and she had cataracts taken out of both eyes. And had macular

degeneration in the left. She got a new script for glasses and was told

everything was good. But she still cant see.Could there be a problem between her

eyes and her brain communicating? She has been a reader all her life and if she

could just sit and read a book she would be so happy. She wants to speak for

herself and wont allow me to question the doctor too much, I write notes to him

but its hard to get everything into one visit. Has anyone else had this problem.

My next big problem is she's hot then she's cold. we live in Mich and getting

ready for winter, I am going through menopause and cant stand the heat. hehe Any

advice there?

Thank you and I look forward to learning and sharing with this group.

Pat

[Guest guest]

Pat,

Two things, you might want to find some picture books for her and see if she

enjoys them. And secondly, most MD's today have email that you could send a

letter ahead of your going in to see him/her. It gives you another way of

communicating without her being there.

Hugs,

Donna R

Caregiver for Mom for 3

years and 4th year in a nh.

(In MI)

She was almost 89 when she

died in '02. No dx other

than mine.

Re: New to the group

Hi Pat, a big warm Texas welcome. (No you don't need the warm part)

Yes, from my experience with my Dear Don there is a problem between the

eyes and the brain. He has complained about not being able to see since the

beginning of his journey with LBD.

If your MIL was a reader, then it may be more difficult to adjust to

having to give it up. I pity you in this situation. If she could read she would

have something to do.

As it is, she will have to adjust to a new place of residence, not being

able to read, as well a the curse of LBD. And you are left to have to help

her through all of this, while you have a curse of your own with hot flashes.

( I started to say, " you are left holding the bag, " and the thought

flashed through my mind " Left holding the old bag. " That isn't nice, as she may

be a dear MIL like my first one was. Make a big smile with your teeth

showing)

Hot flashes are very uncomfortable. I have them to this day with my bad

lungs. So I pity you having to handle all that is on your plate.

How does one smile in the face of all the trouble you are facing? Let me

tell you it " ain't " easy. But, that will be your safety net if you can

maintain a sense of humor, as well as love. Lots of it!

I hope you can find large print books at your library for her. That may

help. Anything, just anything, to keep her happy, and out of your hair as

much as possible. There is nothing worse than having to care for someone that

demands your full attention all the time, and believe me that can drive you

stir crazy.

Best to you dear Pat. Keep on with the questions. We are here to help

each other with love. This is the best List I have ever been on. And I

attribute that to

our precious Moderators, Donna, and , as well as the fact that we

are all in the same boat together, and need each other.

Love with a smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Incorrect diagnoses of AD

in 2005.

A correct diagnosis of LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 11/8/2009 5:23:44 A.M. Central Standard Time,

patst@... writes:

Hi everyone, I'm so glad I found this group. My mother-in-law moved in 4

months ago. I have a lot of question but right now its about vision. I took

her for eye surgery and she had cataracts taken out of both eyes. And had

macular degeneration in the left. She got a new script for glasses and was

told everything was good. But she still cant see.Could there be a problem

between her eyes and her brain communicating?She has been a reader all her

life and if she could just sit and read a book she would be so happy. She

wants to speak for herself and wont allow me to question the doctor too much,

I write notes to him but its hard to get everything into one visit. Has

anyone else had this problem. My next big problem is she's hot then she's

cold. we live in Mich and getting ready for winter, I am going through

menopause and cant stand the heat. hehe Any advice there?

Thank you and I look forward to learning and sharing with this group.

Pat

[Guest guest]

Hi Pat,

You might even try to get 'books on tape' or 'books on CD' for your MIL to read.

Or, maybe even one of the TV channels that have documentaries or old movies of

the genre that she likes to read.

Just a thought,

Joan

>

> Hi Pat, a big warm Texas welcome. (No you don't need the warm part)

>

> Yes, from my experience with my Dear Don there is a problem between the

> eyes and the brain. He has complained about not being able to see since the

> beginning of his journey with LBD.

>

> If your MIL was a reader, then it may be more difficult to adjust to

> having to give it up. I pity you in this situation. If she could read she

would

> have something to do.

> As it is, she will have to adjust to a new place of residence, not being

> able to read, as well a the curse of LBD. And you are left to have to help

> her through all of this, while you have a curse of your own with hot flashes.

>

> ( I started to say, " you are left holding the bag, " and the thought

> flashed through my mind " Left holding the old bag. " That isn't nice, as she

may

> be a dear MIL like my first one was. Make a big smile with your teeth

> showing)

>

> Hot flashes are very uncomfortable. I have them to this day with my bad

> lungs. So I pity you having to handle all that is on your plate.

>

> How does one smile in the face of all the trouble you are facing? Let me

> tell you it " ain't " easy. But, that will be your safety net if you can

> maintain a sense of humor, as well as love. Lots of it!

>

> I hope you can find large print books at your library for her. That may

> help. Anything, just anything, to keep her happy, and out of your hair as

> much as possible. There is nothing worse than having to care for someone that

> demands your full attention all the time, and believe me that can drive you

> stir crazy.

>

> Best to you dear Pat. Keep on with the questions. We are here to help

> each other with love. This is the best List I have ever been on. And I

> attribute that to

> our precious Moderators, Donna, and , as well as the fact that we

> are all in the same boat together, and need each other.

>

> Love with a smile,

> Imogene

>

> Caregiver for my True Texas Gentleman Husband. Incorrect diagnoses of AD

> in 2005.

> A correct diagnosis of LBD 2006.

> A happy personality is contagious. Infect someone today.

> Yours Truly

>

>

>

> In a message dated 11/8/2009 5:23:44 A.M. Central Standard Time,

> patst@... writes:

>

> Hi everyone, I'm so glad I found this group. My mother-in-law moved in 4

> months ago. I have a lot of question but right now its about vision. I took

> her for eye surgery and she had cataracts taken out of both eyes. And had

> macular degeneration in the left. She got a new script for glasses and was

> told everything was good. But she still cant see.Could there be a problem

> between her eyes and her brain communicating?She has been a reader all her

> life and if she could just sit and read a book she would be so happy. She

> wants to speak for herself and wont allow me to question the doctor too much,

> I write notes to him but its hard to get everything into one visit. Has

> anyone else had this problem. My next big problem is she's hot then she's

> cold. we live in Mich and getting ready for winter, I am going through

> menopause and cant stand the heat. hehe Any advice there?

> Thank you and I look forward to learning and sharing with this group.

> Pat

>

>

>

>

>

[Guest guest]

Pat,

I'm sorry you need this group, but glad you found us. You'll be educated as

well as comforted in innumerable ways by being with these caring people.

My mom was diagnosed w/glaucoma in her forties and we blamed many of her early

LBD symptoms on loss of vision. However, at one of her checkups, Mom reported

to the opthalmologist that she was having visual hallucinations. He smiled and

said that " was out of his area " but then he kindly told us the important piece

of information that explained so much: " Only 50% of your vision is in your eyes.

The rest is in your brain. "

Soon after Mom saw a wonderful LBD savvy neurologist who correctly diagnosed her

and got her started on Seroquel.

Wishing you peace and strength for the journey,

Sheila in IN

Daughter of Louise, age 87, dx LBD 7/2007

Seroquel 9AM- 25 mg, 3PM- 62.5 mg, 9PM -100 mg.

>

> Hi everyone, I'm so glad I found this group. My mother-in-law moved in 4

months ago. I have a lot of question but right now its about vision. I took her

for eye surgery and she had cataracts taken out of both eyes. And had macular

degeneration in the left. She got a new script for glasses and was told

everything was good. But she still cant see.Could there be a problem between her

eyes and her brain communicating?She has been a reader all her life and if she

could just sit and read a book she would be so happy. She wants to speak for

herself and wont allow me to question the doctor too much, I write notes to him

but its hard to get everything into one visit. Has anyone else had this problem.

My next big problem is she's hot then she's cold. we live in Mich and getting

ready for winter, I am going through menopause and cant stand the heat. hehe Any

advice there?

> Thank you and I look forward to learning and sharing with this group.

> Pat

>

>

[Guest guest]

Hi There,

Recently my father who is 70 years old was diagnosed with " mild " dementia. And

he is currently taking the medication Celexa (Ant-Depression). He is not taking

anything else. He has to do a road test to see if he is fit to drive. My father

had a CT scan as well and that came back normal. I am so confused about all this

and I don't believe he has dementia. Some say I am in denial.

I have a question to ask? What do Lewy Dementia, LBD and there are a few others.

Please share with me what these all mean.

Thank you,

Debra

[Guest guest]

Hi Debra,

Welcome to the group...we are glad that you found us.

If I am reading your message correctly, you are wondering what is the difference

between LBD, Dementia with Lewy Bodies and others names of teh disease that you

have read on this forum. They are all variations in the name of this one

disease.

I lived with my Mom and I refused to believe that she had dementia at first

because, unlike Alzheimer's, the cognition fluctuates. Especially in the early

stages it can be perceived as him having a bad night, just stressed about

something that may have happened, etc. As things progressed, Mom starting

having hallucinations and thinking that I as someone else, that she needed to

call her 'Mama' and tell her she wasn't coming home tonight, etc. Then I had

her evaluated and after testing the geriatric neurologist diagnosed it as LBD

(Lewy Body Dementia). Mom's MRI, EEG and CAT scan all came back 'normal for

someone her age'.

Please visit this group ofen to read the posts and also to post your own

thoughts, concerns, etc. about your dad and this disease. This is a wonderful

place to find answers, love, and caring.

Joan

>

> Hi There,

>

> Recently my father who is 70 years old was diagnosed with " mild " dementia. And

he is currently taking the medication Celexa (Ant-Depression). He is not taking

anything else. He has to do a road test to see if he is fit to drive. My father

had a CT scan as well and that came back normal. I am so confused about all this

and I don't believe he has dementia. Some say I am in denial.

>

> I have a question to ask? What do Lewy Dementia, LBD and there are a few

others. Please share with me what these all mean.

>

> Thank you,

> Debra

>

[Guest guest]

hi debra,

i am sharon,  we cg (caregive/caregivers) for our lo (loved one) my father from

2003 -2005 when he died. 

lewy body dementia, lewy body disease, dementia with lewy bodies, and lbd are

diffrernet names for teh same disease.

 

with lbd, the cognition and mentail awareness fluctuates.  this ominute he can

talk and make sense and 'be fine' and blink your eyse, and he is in a whole

world of his own.  also there may be dr jekyll and mr hyde routine  where the

evil side comes out and is very evil and hateful or the mr hyde mild manered

nadn meek,

hte problem iwth lbd is the frontal lobe is usuall yeffected first.

 

as you can tell , with my improper speeling and word choices i have early stages

of lbd,  my dad had it as well. i am in the bery very early stages teh only

reason why i have a dainosiss is because i do go to smae doctors neuorlogist and

intenarl medicine doctor. so they can compare on top of each other our scans,

adn nkow the background of the illnesses. 

anyway, i am not embarassed to talk about my illness, and to discuss dads issues

there are mnay wonderful people here in ths gorup so vent, yell, scream, cry,

jump up and down and scratch your toes, if that helps you to come to us,  we

dont judge you, we just wnat to share our knowelge to hel you do the bvest you

acn do,  

 

two rules of cg *caregiing*  one is ALWAYS take the best care of teh caregiver

* you* , because ONLY YOU can give your lo (lovedone) the best when you are

feeling the best you can.

 

second and justa s importatn,  think like a turtle  go low and go slow,  any

changes of meidinces whether starting or stopping  make low dosages changes at

slow incements, the lbd'er cannot handle big chagnes,   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.

Subject: Re: New to the Group

To: LBDcaregivers

Date: Wednesday, May 5, 2010, 7:08 AM

 

Hi There,

Recently my father who is 70 years old was diagnosed with " mild " dementia. And

he is currently taking the medication Celexa (Ant-Depression) . He is not taking

anything else. He has to do a road test to see if he is fit to drive. My father

had a CT scan as well and that came back normal. I am so confused about all this

and I don't believe he has dementia. Some say I am in denial.

I have a question to ask? What do Lewy Dementia, LBD and there are a few others.

Please share with me what these all mean.

Thank you,

Debra

[Guest guest]

Hey everyone, I am new to this group. My name is Christie. I was recently

diagnosed with Fibro, and have also been gluten-free for 4 years, which has

helped greatly. I receieved a " half positive " diagnosis for Celiac Disease and

so I always knew there was something else going on there..

I will be gluten-free for life, since that has helped TONS.

I've also been taking GUIAFENESIN (is anyone else on this protocol by Dr. St.

Amand?)

I also take Amino Acids from the Supernutrient Corportation, Aloe Vera, and

Vitamins. (Dr. Brice E. Vickery has helped me tons)..

I feel pretty good now... the only thing that still bugs me is that I wake up

with VERY swollen eyes and nose every day. Does anyone have this... and what

helps it??

Other than that, my quality of life has GREATLY improved. Going Gluten-Free was

the #1 thing!!!

I am excited to get to know others on this group and network with you all. Have

a nice weekend!

Christie

[Guest guest]

Hi Christie,

Welcome to our group, its always nice to see a new member but at the same time I

have to think oh no another one with this stupid disorder poor girl.

I was very excited to see you say that Dr. Brice Vickery was helping you with

your vitamin intake. Because I have come across a couple of his youtube videos,

and he seems to be such a nice man.

I would love to hear the protocol that he has you on. I also very often wake up

with swelling around the eyes and feel like I can not breathe out of my nose

in the mornings. What does seem to help me is that I take alot of Vitamin C and

with the Vitamin C I also take N-acetyl cystein. These two combined help

tremendously

with keeping the sinuses clear, any can breathe better. Its also a great

combination to help thin any mucus in the lungs.

Its awesome that you are keeping at the gluten free diet. I don't do well with

gluten either.

This is one of the best support groups that I have come across online. We are

very close to each other and keep in constant contact letting everyone know if

we find

something new that helps or works.

Alot of the people on here are on very low carb diets that they are following

from this website http://www.healingnaturallybybee.com/sitemap.php I follow it

somewhat

but not to the extent that some are.

I take coconut oil everyday as well as Vitamin D3, B complex, Vitamin E, Cod

Liver oil, CoQ10, L-Carnatine, Vitamin C, N-acetyl cystein, Selenium and Zinc.

When I remember I also take Magnesuim powder and Calcium.

I try to drink alot of water, and herbal teas when I feel like making them.

I try my best to cut out sugar out of my diet, and starches.

Well stay in touch with us and do share what you can.

Love,

Carol xoxoxo

To: fibromyalgiacured

From: christiebessinger@...

Date: Fri, 11 Mar 2011 22:23:12 +0000

Subject: New to the Group

Hey everyone, I am new to this group. My name is Christie. I was recently

diagnosed with Fibro, and have also been gluten-free for 4 years, which has

helped greatly. I receieved a " half positive " diagnosis for Celiac Disease and

so I always knew there was something else going on there..

I will be gluten-free for life, since that has helped TONS.

I've also been taking GUIAFENESIN (is anyone else on this protocol by Dr. St.

Amand?)

I also take Amino Acids from the Supernutrient Corportation, Aloe Vera, and

Vitamins. (Dr. Brice E. Vickery has helped me tons)..

I feel pretty good now... the only thing that still bugs me is that I wake up

with VERY swollen eyes and nose every day. Does anyone have this... and what

helps it??

Other than that, my quality of life has GREATLY improved. Going Gluten-Free was

the #1 thing!!!

I am excited to get to know others on this group and network with you all. Have

a nice weekend!

Christie

[Guest guest]

Christie, have you checked out water retention as the cause o your swollen

eyes?

Perhaps too much salt? Some food that causes the swelling to get worse that

then causes water retention?

rosemarie

>

>

>

>

>

> Hey everyone, I am new to this group. My name is Christie. I was recently

> diagnosed with Fibro, and have also been gluten-free for 4 years, which has

> helped greatly. I receieved a " half positive " diagnosis for Celiac Disease and

> so I always knew there was something else going on there..

>

> I will be gluten-free for life, since that has helped TONS.

>

> I've also been taking GUIAFENESIN (is anyone else on this protocol by Dr. St.

> Amand?)

>

> I also take Amino Acids from the Supernutrient Corportation, Aloe Vera, and

> Vitamins. (Dr. Brice E. Vickery has helped me tons)..

>

> I feel pretty good now... the only thing that still bugs me is that I wake up

> with VERY swollen eyes and nose every day. Does anyone have this... and what

> helps it??

>

> Other than that, my quality of life has GREATLY improved. Going Gluten-Free

> was the #1 thing!!!

>

> I am excited to get to know others on this group and network with you all.

> Have a nice weekend!

>

> Christie

>

>

>

>

>