RE:

[Guest guest]

I haven't heard from you in such a long time. How is your FIL doing?

How have you been doing? It is wonderful seeing your name in here.

Hugs to ya!

Sandie

[Guest guest]

In a message dated 2/18/2003 9:11:16 AM Pacific Standard Time,

diegs42@... writes:

> This is just a guess, but I think the testing is actually done by a

> neuropsychologist and not a neuropsychiatrist

So -- what about a neurologist then. Are they acceptable clinicians or

not. Is the neuropsychologist better at this?

Joni

[Guest guest]

Joni,

I'm sorry, I think I may be misunderstanding your question. I'll

explain my situation, and hopefully that will clarify.

Our neurologist that specializes in dementia is the primary (or

umbrella) physician. She has the most comprehensive knowledge on the

exact processes that are occurring in the brain. She also

coordinates his total care, and has referred my dad to the

neuropsychologist (for cognitive testing, not organic testing) and

the geriatric psychiatrist (for his mental well-being and psychiatric

medications). In other words, when he has testing done by the

neuropsychologist, she gets the results as well. And when he meets

with the geriatric psychiatrist, she gets a report as well.

The neurologist is not a substitute for the neuropsychologist, and

the neuropsychologist is not a substitute for the neurologist. They

are both essential to his care and work hand-in-hand. I hope that

helps, and if you have any other questions, please ask.

------ in Madison, WI (USA)

> In a message dated 2/18/2003 9:11:16 AM Pacific Standard Time,

> diegs42@h... writes:

>

> > This is just a guess, but I think the testing is actually done by

a

> > neuropsychologist and not a neuropsychiatrist

>

> So -- what about a neurologist then. Are they acceptable

clinicians or

> not. Is the neuropsychologist better at this?

> Joni

>

>

>

[Guest guest]

ahh ha .... OK I've got it now .... thanks.

Joni

[Guest guest]

You have strongly been in my thoughts and prayers. If time permits,

please let us know how you are doing!

Sending you many hugs!

Sandie

[Guest guest]

Strange that you mentioned your mom never asks about her things...my dad

didn't either. He went from his apartment, to an adult psychiatric

hospital, to a nursing home. It just never came up, from him. I was

always honest and told him I would take care of his apartment and

things, yet as you mentioned it just didn't seem important. My dad also

had had a peg tube and he totally hated it. He would detach the tube

from his belly, look whoever was in the room in the eyes, and spin the

tube so the liquid nutrition would go all over the room. Then he would

throw the tube down. I ended up having a 5 minute decision to make by

myself for the feeding tube which gave my dad another 2 1/2 yrs of life,

and when asked again if I wanted a tube in...I said no. My dads was in

from Jan 2000 to April 2000. He ended up gaining all the weight back,

regained strength, was able to walk again, somewhat talk, and appeared

healthier than he had in quite a while. After the quick progression in

June 2002, I saw no reason to tube feeding again. Best of luck to you!

Sandie

Des Moines, IA

[Guest guest]

Thank you for the offer...may take you up on that someday. Also, sooooo

glad it is too snowy for a moped ride. Guess that should hold your dad

for a few days anyway. Not sure what will happen for him when the snow

melts and it starts getting warmer...

Keeping you in my thoughts and prayers....also, my offer stands for your

mom's upcoming surgery, if you need help, or just even want to take your

dad out for pie and coffee (tea, pop), call me and I will meet with you

and he.

Hugs-

Sandie

[Guest guest]

I want to personally thank you for the update. The fluctuations of LBD

can be so uneasy. I truly believe time and our lifeline destination is

out of our hands. When it is our time to go, we will leave this earth

for a resting place beyond. But until then, you are so right...where

there is life, there is hope. My blessings to this new ward for

recognizing that your grandpa is still alive and giving it their all

'til the end'. My continued prayers for your strength and endurance to

see this through, and for your grandpa to have comfortable, peaceful

days.

Sending many warm hugs from Iowa!

Sandie

[Guest guest]

Still hugging you with my heart, and keeping you, your family, and

especially Grandpa Bert in my close prayers.

Blessings and hugs being sent your way-

Sandie

[Guest guest]

Hello , you mention your e-mail mailbox getting so full from the

LBD group messages. May I suggest to you what I do. I have set it up

so no messages come to me direct into my mailbox. I read all

correspondence on line. That does free my mailbox up.

> 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]

My heart truly goes out to you. I am happy to help if you need me to.

Even a phone call, or to meet (with your dad) could give you a break.

Know that I am here for you and it would be my blessing to help you

through this time with your mom's recovery, and your dad's struggles.

Hugging you in Iowa, with all my heart.

Sandie

[Guest guest]

You and your family are close in my thoughts and prayers.

Hugging you with my heart-

Sandie

[Guest guest]

You are welcome. Thank you and your family for allowing me to be part

of your days at the hospital.

My prayers are with you, your family, and for your dad's comfort and

peace.

Hugging you with my heart.

Sandie

[Guest guest]

,

I can only say that in my mom's case her mind is still very active.

She gets mixed up on medications,and little things sometimes but not always.

She gets some things that people say out of context and doesn't seem to

realize just how bad off she is. However she can hold a conversation, she

does remember things both past and present and she knows when she is in

pain. If you talked to her on the phone you wouldn't know she even had a

problem. From what I hear in this group half of our loved ones are in their

right mind and half don't talk or express themselves well. I guess it would

be an individual thing. You know your Dad better than anyone. Does your Dad

communicate? Can you tell us a little more about him, age, symptoms,is he

living at home etc. I would like to say I am glad you came to this group, I

am sorry you have to be here but haveing a LO (loved one) with LBD, I feel

this is the best place for you to be. Good luck, write anytime and remember

there are a lot of similarities but each patient is an individual.

Take care, Shirley

>Shirley,

>Less than two weeks ago my Dad was diagnosed with LBD. The

>neurologist told us that he had no insight into his present

>intellectual impairment. This brought confort to me as sometimes I

>got the feeling that my Dad knew something was wrong but could not

>express it. I just read your LBD patient's point of view and am now

>wondering whether my Dad does or does not understand what is

>happening to him. Can you please provide me with your opinion.

>Thanks.

_________________________________________________________________

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[Guest guest]

I want to welcome you to the group. Thank you for sharing a bit of your

story. May I ask how old is your dad? How long has he had symptoms of

LBD, and is he still living at home?

I must echo what Shirley said. This disease is so individual. My dad

wasn't able to carry on a conversation for oh, 2 yrs before he passed

away, yet at times he would stand in his room at the NH, clenching onto

the vanity and looking into a mirror yelling, " Why me, why me? " Also,

in February 2002 I had the Ativan stopped (didn't know up til then the

effects it could have on my dad) and we started Exelon. Within a couple

months my dad was talking more in sentence form and was talking of what

he and I did the summer prior. He said, " Remember when you took me

outside to feed the birds? "

He wanted to see my truck as he had remembered it. So, I know there is

dementia, I know there are hallucinations and delusions but I also know

the experiences my dad had. I have to tell you, when my dad started

talking again and talking about memories I was floored, baffled, and

thrilled. I cherish those memories.

Please keep posting and let us know how you are doing, and how your dad

is doing. Through your experiences others will also benefit.

My prayers will be with you.

Sandie

Des Moines, IA

[Guest guest]

Thank you for answering my questions. And might I add, there are

several members here from Canada. You truly are not alone, both

geographically and through these emails. My dad was 65 when he

passed...just seems so very young. Is your dad still taking the

Resperidone? Has any other meds. been added? It is tough to say 'what

stage' he is in. One thing you will find is LBD fluctuates so much. We

can assume our LO is in the end stages, ready to pass, then they

prevail. Just as you mentioned with your dad at the doctor visit. It

appeared nothing was wrong, when in reality, everything was wrong.

Please keep posting. You will find many answers here, much support, and

all the love in the world.

Hugs-

Sandie

Des Moines, IA

[Guest guest]

Yes, I will keep you updated. My prayers are with you and your family.

Cherish these days with your dad.

Hug, and more hugs to you!

Sandie

[Guest guest]

Hopefully I can help with getting your sister directed to the group.

Try having her type in 'lbd caregivers yahoo' in a search engine. Or

even just Lewy Body Disease caregivers. Also,

http://www.lewybodydisease.org will bring up the LBD website. Then

there are links to click onto...I believe one is caregivers, or email

groups. After clicking onto that, it should bring up the 2 groups

available - LBD Caregivers and LBD Caringspouses. Please let me know if

this helps.

Blessings to you!

Sandie - today we are expecting a high of 70 (farenheit, for our

International family) and sun, sun, and more sun....great attitude

adjuster!

[Guest guest]

Sandi,

Tell that I am thinking of her and sending strength to get through this

time.

Debbie C

[Guest guest]

Yes, I am looking forward to " 40 " or atleast it isn't really bothering

me. I guess as long as I am viewing life from above ground, I am ok

with it. My brother turned 42 April 7, and it hit me today that our

first uncle died when he was 42. That made my heart skip a beat, but,

again, as long as my brother and I are here on earth together...BRING IT

ON!

You are welcome with the help in getting Beth to the site. Bravo! Glad

she made it, and you should pat yourself on the back for being the

messenger and directing her to the group. I look forward to a post from

her.

Too bad your dad doesn't see the same doctor. I agree, it does make a

difference. I would suggest printing off information from the internet

and taking it to the doctor's office, VA, office, or where ever it is he

is being seen. Our own website http://www.lewybodydisease.org

is very helpful and informative and would be a great place to start.

Also, when typing in Lewy Body Disease in a search engine brings up more

websites, some of which have printable versions...never hurts to

educate. I always carried along literature for the many people I came

in contact with concerning my dad. The VA could put this in your dads

file/charts so the next doctor that see's him would/should have

something to go on. Let me know if I can help in getting you to a good

website.

Take Care, keep us posted, and I look forward to seeing more posts from

you.

-----brace yourself....40 is knocking....LOL

Hugs-

Sandie

[Guest guest]

My prayers are with you and your family. I will be visiting your dad

today or tomorrow. Will have to look up the Hospice/Kavanaugh house in

ston as I am not sure where it is. I have a baby shower to go to

today, with Aramark (momma is having her 3 girl, and boy did I go crazy

shopping...having 3 boys of my own...there are SO MANY adorable little

girl things out there...somebody STOP ME) so I will be in the

neighborhood. Please let me know if I can help, or even to set with

your mom to give her a break.

Hugs to you and your mom!!

Sandie

[Guest guest]

Are you sure you don't mean the 21st of March? Your post read 21st of

May. I remember you letting us know of your mom's passing and I have

kept you in my prayers. You are now where I have been. The days move

forward yet seem so empty. For so long there was so much time, energy,

and caregiving involved...now life is so quiet. There is peace and pain

in the same breath. You will survive this, as the rest of us have, but

it will take time. Take the time you need to remember, reflect...and

eventually, move forward.

My thoughts and prayers are with you today.

Sandie

Des Moines, IA

[Guest guest]

My heart goes out to you as you grieve over your mom, which you are

still able look in her eyes. This is such an overwhelming, confusing

disease. LBD turned my dad into someone I didn't know. He was always

fun loving, full of laughter and loved to eat. He (well, and I) never

turned down chocolate.

His final stages were different to what you are explaining about your

mom's final stages. My dad was unable to talk in a sentence, the last

year or two of his life. He went through choking periods where he would

gag and choke on everything, even liquid. From the middle of June to

the middle of August, he lost over 30 lbs. From then on he kept losing.

Some days he would eat, some, and other days he wouldn't eat anything.

He had became completely incontinent. September 4, he was admitted to

an adult psychiatric hospital (via my truck as the NH never ordered an

ambulance, arrgghh).

From that day on were the true - final days - of my dads life. It was

as if he just stopped eating, stopped standing and stopped walking.

The hospital tried everything, all options of food, mainly chocolate, to

get him to eat something. He was so very thin, his hands took on a

closed up look as if he was clenching finger tips to thumb tip and

couldn't be opened. His eyes had black rings around them and were

somewhat sunken in...yet still big and blue. His elbows were usually

bent and his hands rested in the air turned inward at the wrist. He had

a raspy sound to his lungs although they were clear. The inside of his

mouth started to crust over and it took every ounce of energy I had to

make him laugh...or even smile.

I guess my point is, the timing is way out of our hands. Everything is

made beautiful in its own time. As long as there is life, there is

hope.

Cherish these times, even if they are heartbreaking and hurtful. The

disease is causing your mom agitation and rudeness. Your mom's heart is

still the same. Even though I thought I was prepared, I was ready to

let my dad go, when I heard the news my dad had passed away I felt like

I was in a horrible nightmare and I couldn't breath. I was at a doctors

appointment and I instantly forgot how to get home. I used my cell

phone to call my brother and couldn't get a hold of him, or anyone else.

I was so very lost. I hope all of this wasn't too grim or dark for

anyone still travelling the LBD journey. I just can't stress enough how

valuable each and every breath, each moment of life is.

My mind knows my parents are together now but my heart is missing them

tonight.

Thanks for letting me explain some of my story.

Blessings to all and sending hugs, too!

Sandie

[Guest guest]

Please know you are not worthless. Your heart is so big, so full of

love, that you are searching for any possible way to help your mom. You

may feel helpless, but you are not worthless.

May I ask...have you tried any of the anti-depressants? I took/and

still take Zoloft. Watching my dad change into someone unfamiliar to me

was more than I could handle. In the beginning, I was the one he would

target his words to, not my brother...yet I was the one over at his

apartment 2 or 3 times a day. I was the caregiver and I was the child

hearing the negativity. LBD was causing my dad to say things he

wouldn't normally say to me.

I have survived this, and you will too. I will say an extra prayer for

knowledge and strength tonight with your name on it. You are not alone.

You may email me personally if it will help you. Ask any questions,

open your heart, and let me/us carry you through the tough times.

Holding you close in my heart.

Sandie

Des Moines, IA

[Guest guest]

It is nice seeing your name in here. It has been a while...you have

been missed. Great job jumping right in and welcoming the newer of the

new members. :-))

Take Care!

Sandie

Des Moines, IA