Re: New Member

Report post · July 26, 2002

: My mother is 79 and has only been recently diagnoised with LBD but

has had symptoms for a number of years. We now have a name and the opportunity

to know what we are dealing with. My father was the hardest one to convince

that mom needed help. As time moves on you will notice more behaviors than

wearing several pairs of underwear at once. We went through this as well. In a

more avanced state the shuffling walk will stop suddenly and become no walking.

(Frequently after a fall) Feeding herself will become challenging and the

" little green men " or whatever form it takes will be harder to overlook. It was

when she starting saying terrible things about my father hitting her, cheating

on her, and having " sex parties " that he had to bluntly face the facts and

agreed to get her help. (Be prepared to not let her negative comments towards

you overwhelm you and prepare your siblings that they may be next!) I imagine

many have had this happen and then days later they will say how much they love

you and appreciate what you are doing for them. Do what you know is best for

your mother. Consider in-home care if this is possible at all. This is working

for us now with the help of home health bringing aids like a toliet lift device,

a lift chair, and visits from a nurse for vitals. Paid help during the day can

be cheaper than a nursing home. I am in the mid-west and it is about $96 a day

for only marginal quality nursing home care. I used to think the immediate

answer was the nursing home but I am glad that my father refuses this at this

time. I made sure he understands that he is not letting my sister and I down if

he makes this decision. If you have been reading the postings the nh nightmares

scare me into thinking what we are doing is best even though it is difficult and

challenging. I can be thankful that mom rests well most nights with my dad

beside her. Not everyone may have this blessing. She does have some difficult

nights. When she looses bowel control that may a factor that my dad can not

continue with. Mom occasionally looses bladder and bowel control at this time

and her swallowing has improved.

The best immediate advice I received was to get power of attorney right away

with your sisters help. If you do it on your own your

brother may be suspicious. Your mother may be on her best behavior when she is

at your brothers and like many men he may not " see " what your are seeing and

understanding. As a post once described, the LDB's are on their best behavior

in social situations and demonstrate less symptons. I have wittnessed this

lately and friends are starting to come by for brief visits.

She kind of " wakes up " for about 10-15 minutes and can have a conversation. If

she stays at your sisters for a least several weeks

she will see and understand differently than your brother. If two sisters agree

he may begin to see the light as well.

In defense of family members wanting to take different approaches, it worked

best when symptons advanced to the degree that no one could ignore them anymore

and then everyone started to work together. Not that this was a good thing, but

better choices started to be made that made life better for everyone. My mother

is still at home with my father as the nighttime caregiver, my sister and I, a

hired lady for 1-2 days and home health aide visits. They home health comes 2

times a week for a bathing with is a blessing. With her rigidity bathing is a

challenge.

In the beginning of this challenge I wanted to know what to expect so I could

" plan " what needed to be done. I have learned with

LBD that you can not " plan " and I had to let go trying to anticipate the next

need or disabilitly. Each day and patient is different.

As a post said, be thankful for the good days because they will help carry the

bad ones. So true!!!! Take pictures, record memories, cherish what you do have

because tomorrow can be better or worse. Look for the small blessings - such as

I

appreciate that my children can witness me giving caring patient care to my

mother which might help them care for me... as I

have the memory of my mother caring for her parents. Remember children do what

they see! I was shocked as a friend told me that is was an " honor " to work in

a nursing home and help them at the most difficult times of their life! What an

unexpected attitude. It helped me change my attitude and approach.

Best wishes for a challenging

road. Colleen

new member

Hi,

I'm a new member, my name is . My mom has Lew body

and is 79. In the past year she has gone from people not

knowing she has anything wrong to now spending the day

changing clothes. Today she had three pair of panties on. LOL

My problem is my brother. He doesn't think there is anything

wrong with mom and when he keeps her for a few days, he tells

her that I am going to put her in a nursing home so when she

gets home with me, she refuses to sleep because she is " on

guard " . Needless to say, I don't have much use for my brother,

but he just lies and tells me he doesn't say this. He is mentally

ill himself so I never know when I can believe him.

He also yells at mom for using a cane, so she forgets how to

use one when she gets back with me and he yells at her for

forgetting things. I'm to the point of sending elder abuse on

him,. I am not well myself, and am getting a spinal block this

afternoon. Since mom is not sleeping, she is forgetting how to

use the bathroom today. Just what I need.

Thanks for being here and I look forward to hearing how you all

cope. BTW, I'm sending my mom to my sister to stay for a few

weeks. She said she could stay with her for a few months, but

we've got a pool in our family that she will send her back to me

within three weeks.

I keep telling Mom that it is only fair to me to put her in a home

when I can no longer keep her. She is scared to death by

hearing stories on the news and the stories my crazy brother

tells her. I wish there were a way I could sue my brother. Money

is the only thing he thinks of. (That's why I think he wants to take

care of her. He would get money from her home when it is sold

for income for taking care of her.)

Again,

Report post · July 30, 2002

> I am the soon to be Grandmother of a child with PMG.

Welcome--

Does this mean that your grandchild is diagnosed in utero? Or are

you soon to be an adoptive grandmother?

I have 4 boys. ,the youngest one (a twin) has PMG which affects

his motor abilites and vision. He is 2, but still unable to roll or

sit. He is fed with a g-tube because his ability to eat is limited.

However, he is a wonderful little person, and a great joy to our

family.

I think you will find this loop to be a supportive place and the

source of good information.

, mom of boys

Report post · July 30, 2002

> I am the soon to be Grandmother of a child with PMG.

Welcome--

Does this mean that your grandchild is diagnosed in utero? Or are

you soon to be an adoptive grandmother?

I have 4 boys. ,the youngest one (a twin) has PMG which affects

his motor abilites and vision. He is 2, but still unable to roll or

sit. He is fed with a g-tube because his ability to eat is limited.

However, he is a wonderful little person, and a great joy to our

family.

I think you will find this loop to be a supportive place and the

source of good information.

, mom of boys

Report post · July 30, 2002

> I am the soon to be Grandmother of a child with PMG.

Welcome--

Does this mean that your grandchild is diagnosed in utero? Or are

you soon to be an adoptive grandmother?

I have 4 boys. ,the youngest one (a twin) has PMG which affects

his motor abilites and vision. He is 2, but still unable to roll or

sit. He is fed with a g-tube because his ability to eat is limited.

However, he is a wonderful little person, and a great joy to our

family.

I think you will find this loop to be a supportive place and the

source of good information.

, mom of boys

Report post · July 31, 2002

I am a care provider through CAP-C (Community

Alternatives Program for Children) to a 18 month old

boy who has lissencephaly. I am interrested in

learning all that I can so I can provide him with all

the care he will need now and in the future.

Thank You for Responding,

If you would like to email me... rnhall2001@...

__________________________________________________

Report post · August 3, 2002

,

If you have a specific question, just post it here, you will get numerous

answers I am sure. Otherwise, just scan the messages that are posted and glean

any info. that interests you from them.

Mike and , parental units to:

Drey, almost 18 and can't wait to move out

so she can have a " real " life. 15 1/2 year old

Wesley who spent the summer at the beach collecting

" babes " phone numbers. Jordan who is almost 9, and

actively seeking to overtake Drey's know-it-all position.

Bringing up the rear (for now), Carver, 18 month old with

BPP, big blue eyes, and Grandma's heart.

Re: New Member

I am a care provider through CAP-C (Community

Alternatives Program for Children) to a 18 month old

boy who has lissencephaly. I am interrested in

learning all that I can so I can provide him with all

the care he will need now and in the future.

Thank You for Responding,

If you would like to email me... rnhall2001@...

__________________________________________________

Report post · August 14, 2002

Welcome to the group. I know it is very hard to not

know what caused your son's condition. Have you had

genetics testing done? If the PMG was caused by an

infection you had while pregnant, generally the MRI

would show " scars " or calcifications in the brain from

the attacking virus or bacteria. At least, that's what

our neurologist told us about our 15 month old,

. We have done EVERY TEST there is and still no

answer. Very difficult for us to handle as he is our

first child, and, as a result of this, probably our

last. Each child on this site has different issues.

You are doing the right thing by trying to find an

expert for your son. Good luck.

in Houston, Texas where it's 95 degrees and

teaming with mosquitoes.

--- Higgins wrote:

> i have a 10 year old son called ben son who started

> having fits at 5 months

> old which i was told not to worry about as he may

> never have them again.

> well at 7 months old he had h. influnenzae

> septicaemia which was scary and

> then it gone on from there he been going worse over

> the last couple of years

> it wasn't untill he was 9 that they find he had

> polmicrogyria on his 7 th

> mri scan. they say he has intractable cryptogenic

> epilepsy with generalised

> and partial elements, left frontal polymicrogyria,

> severe learning

> difficulties with regression, behavioural

> dirriculties with attentional

> problems/ adhd and he is not getting any better. i

> has chicken pox when i

> was carrying him at 25 weeks not sure if that didn't

> help?????? i still

> learning things about him each day but its very hard

> watch your child

> getting worse and there nothing you can do about it,

> i look at it this way

> there are children worse then him out in the world

> he is going to see a

> professor in london at great ormond street

>

> _____

>

> Get more from the Web. FREE MSN Explorer download :

> http://explorer.msn.com

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

Report post · August 14, 2002

Welcome to the group. I know it is very hard to not

know what caused your son's condition. Have you had

genetics testing done? If the PMG was caused by an

infection you had while pregnant, generally the MRI

would show " scars " or calcifications in the brain from

the attacking virus or bacteria. At least, that's what

our neurologist told us about our 15 month old,

. We have done EVERY TEST there is and still no

answer. Very difficult for us to handle as he is our

first child, and, as a result of this, probably our

last. Each child on this site has different issues.

You are doing the right thing by trying to find an

expert for your son. Good luck.

in Houston, Texas where it's 95 degrees and

teaming with mosquitoes.

--- Higgins wrote:

> i have a 10 year old son called ben son who started

> having fits at 5 months

> old which i was told not to worry about as he may

> never have them again.

> well at 7 months old he had h. influnenzae

> septicaemia which was scary and

> then it gone on from there he been going worse over

> the last couple of years

> it wasn't untill he was 9 that they find he had

> polmicrogyria on his 7 th

> mri scan. they say he has intractable cryptogenic

> epilepsy with generalised

> and partial elements, left frontal polymicrogyria,

> severe learning

> difficulties with regression, behavioural

> dirriculties with attentional

> problems/ adhd and he is not getting any better. i

> has chicken pox when i

> was carrying him at 25 weeks not sure if that didn't

> help?????? i still

> learning things about him each day but its very hard

> watch your child

> getting worse and there nothing you can do about it,

> i look at it this way

> there are children worse then him out in the world

> he is going to see a

> professor in london at great ormond street

>

> _____

>

> Get more from the Web. FREE MSN Explorer download :

> http://explorer.msn.com

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

Report post · August 17, 2002

Hi Missi-

I'm Christie, and my 11 year old son, Sam has a milder case of PMG than many

I've heard about. We also go to the U of M. We first saw Dr. Lockman

there, then we saw Dr. Dobyns a few times before he moved to Chicago, now we

see Dr. Charnas. Who do you see?

Sam was first diagnosed at 10 months old, when we noticed he wasn't using

his left hand, and his development was slightly behind. First we got an

incorrect diagnosis, then a blanket term of " non-specific white matter

changes " . We didn't get the PMG dianosis until he had his third MRI at 6

years old. That's when we found out about Dr. Dobyns.

At 1 year old he had an EEG; his seizures consisted only of blinking of his

eyes (looked like a startle). He has been on Tegretol ever since, and we

have not had any more problems with seizures. He had an EEG this spring to

see if we might be able to take him off his meds, but his brain still did

show some seizure activity, so he has remained on his meds.

When we saw Dr. Dobyn's he believed that Sam's PMG was likely genetic,

though we didn't have any obvious clues in the family history.

I believe that hypopigmentation is when areas of the skin have little or no

pigment to them.

I would love to hear more about Katya, and would be happy to answer any

questions that I can.

Christie

New Member

Hello, my name is Missi. I am writing to find as much info as

possible. My 8 1/2 month old daughter, Katya, was just diagnosed

with mild cortical dysgenesis, which I was told is also called

polymicrogyria. We had the MRI because she was falling about 4 -8

weeks behind on gross motor skills (she doesn't crawl yet or roll

much, but does sit, eat, jabber) and because her sister has

Schizencephaly. I am very interested to hear if anyone else has a

child who is " mild " . We will have an EEG done this week to rule out

any seizures at this time. I also have genetic questions since I now

have two kids with brain malformations (was told this couldn't happen

up until 2 weeks ago!) - have also e-mailed dr. dobyns already. I

was also wondering what hypopigmentation was. Oh, one more question,

how many kids with seizures out there are seizures that aren't very

noticable. Well, anyway, I look forward to hearing from anyone.

Thank you!

Missi Baranko

Report post · September 15, 2002

Dear

Do you mean Scotland as in GREAT BRITAIN??!!

It would be great to know someone else has found this group in the same

continent as me! I am in Kent.

So much of your email rings true for my experience.

My dad is with us at the moment and we feel just as 'out on a limb' as you!

Great to hear from you and welcome!

Sally xx

New Member

Hi everyone,

I've been reading some of your archive messages and it comes as a

great relief to realise that there are other people out there dealing

with the same types of problems.

To fill you in on our background: my father-in-law was diagnosed with

Lewy Bodies type dementia just over a year ago. That said his decline

has been fairly rapid. He now hallucinates almost constantly and

finds it very hard to follow the simplest of conversation. He stills

lives in his own home but this is only possible as my husband works

on the farm 7 days a week and we live only a few hundred yards from

him. The social worker who has been appointed to us advises us we

should try to keep him in his own environment for as long as possible

but she has now been off sick for three months and no one has taken

on her case load so we again feel we are out on a limb.

Does anyone have any advice about dealing with night time episodes?

Dad has started to sleep a lot less and becomes considerably more

agitated in the evenings. On Friday night he spent the whole night

try to rearrange the furniture in his house and last night was

unable to leave him as he pointblank refused to go to bed

because " this is not my house " . This is happening more and more

frequently with him.

I noticed from some of your messages that some sufferes seem to be

aware of what is happening to them but Dad Does not believe there is

anything wrong with him and becomes very beligerent and angry when we

won't let him drive etc.

He has had one episode of respite care in June and is now due to go

back into respite for a week to allow us to go on holiday for a few

days. He has decided however that he's " not going back into that

place " even though it is a beautifully run, friendly nursing home.

I guess it's the pressure of this and the guilt of wanting even a

short time for ourselves as a family that has lead me to search out

this group.

Does anyone have any experiences of a similar situation and how you

dealt with it?

, Scotland

Report post · September 15, 2002

>I noticed from some of your messages that some sufferes seem to be

>aware of what is happening to them but Dad Does not believe there is

>anything wrong with him and becomes very beligerent and angry when

>we won't let him drive etc.

Sorry that you had to come looking for this site , but am glad

you found it, if we can't help we can listen. Sounds like you have

your hands full with your FIL not admitting that there is a problem.

My husband has LBD and I care for a lady with Parkinsons and

dementia. She too has periods that she says she is not home...it is

real hard to convince them that they are home. One thing we found

with her was to turn some more lights on, she doesn't see to well and

when the house is dim she has a hard time. She also does not beleive

that there is a problem, it is us who has the problem, but she is not

beligerent. I am so sorry that your FIL is resistant to going back

into the nh, but if he is saying that he doesn't have a problem then

he doesn't see the reason for going to the nh. Is he seeing a

neurologist? Sometimes a doctor can convince them of something like

this where we can't. What meds is he on? Maybe changing something

might help. Hope some of this helps, and hopefully you will be able

to take your respite. God Bless and good luck. Barb

Report post · September 15, 2002

Hi Sally,

Great to know there is someone else in GB. We are in Dumfries and

Galloway so quite a long way from Kent.

> Dear

> Do you mean Scotland as in GREAT BRITAIN??!!

> It would be great to know someone else has found this group in the

same continent as me! I am in Kent.

> So much of your email rings true for my experience.

> My dad is with us at the moment and we feel just as 'out on a limb'

as you!

> Great to hear from you and welcome!

> Sally xx

> New Member

>

> Hi everyone,

>

> I've been reading some of your archive messages and it comes as a

> great relief to realise that there are other people out there

dealing

> with the same types of problems.

>

> To fill you in on our background: my father-in-law was diagnosed

with

> Lewy Bodies type dementia just over a year ago. That said his

decline

> has been fairly rapid. He now hallucinates almost constantly and

> finds it very hard to follow the simplest of conversation. He

stills

> lives in his own home but this is only possible as my husband

works

> on the farm 7 days a week and we live only a few hundred yards

from

> him. The social worker who has been appointed to us advises us we

> should try to keep him in his own environment for as long as

possible

> but she has now been off sick for three months and no one has

taken

> on her case load so we again feel we are out on a limb.

>

> Does anyone have any advice about dealing with night time

episodes?

> Dad has started to sleep a lot less and becomes considerably more

> agitated in the evenings. On Friday night he spent the whole

night

> try to rearrange the furniture in his house and last night

was

> unable to leave him as he pointblank refused to go to bed

> because " this is not my house " . This is happening more and more

> frequently with him.

>

> I noticed from some of your messages that some sufferes seem to

be

> aware of what is happening to them but Dad Does not believe there

is

> anything wrong with him and becomes very beligerent and angry

when we

> won't let him drive etc.

>

> He has had one episode of respite care in June and is now due to

go

> back into respite for a week to allow us to go on holiday for a

few

> days. He has decided however that he's " not going back into that

> place " even though it is a beautifully run, friendly nursing home.

>

> I guess it's the pressure of this and the guilt of wanting even a

> short time for ourselves as a family that has lead me to search

out

> this group.

>

> Does anyone have any experiences of a similar situation and how

you

> dealt with it?

>

> , Scotland

>

Report post · September 15, 2002

Thanks for that Barb. FIL is on medication (Rivastigmine) Hopefully

we'll be able to discuss this with the doc and Community Nurse when

he goes in for respite(provided we get him there!). It's much easier

to change his medication when he is in the NH as they are able to

notice any improvements or problems etc. Anyway, todays been slightly

easier and time will tell if we manage to persuade him to go to bed

tonight. He seems quite tired so here's keeping our fingers crossed!

> >I noticed from some of your messages that some sufferes seem to be

> >aware of what is happening to them but Dad Does not believe there

is

> >anything wrong with him and becomes very beligerent and angry when

> >we won't let him drive etc.

>

> Sorry that you had to come looking for this site , but am

glad

> you found it, if we can't help we can listen. Sounds like you have

> your hands full with your FIL not admitting that there is a

problem.

> My husband has LBD and I care for a lady with Parkinsons and

> dementia. She too has periods that she says she is not home...it

is

> real hard to convince them that they are home. One thing we found

> with her was to turn some more lights on, she doesn't see to well

and

> when the house is dim she has a hard time. She also does not

beleive

> that there is a problem, it is us who has the problem, but she is

not

> beligerent. I am so sorry that your FIL is resistant to going back

> into the nh, but if he is saying that he doesn't have a problem

then

> he doesn't see the reason for going to the nh. Is he seeing a

> neurologist? Sometimes a doctor can convince them of something

like

> this where we can't. What meds is he on? Maybe changing something

> might help. Hope some of this helps, and hopefully you will be

able

> to take your respite. God Bless and good luck. Barb

Report post · September 15, 2002

Welcome to the group. I remember when my dad was first diagnosed, he

too didn't think anything was wrong. When visiting the neurologist dad

was shaking his head in a no response as I was shaking my head yes when

asked if dad noticed any struggles. From what I remember, this disease

can become very scary and confusing to the LBD person and safety became

an issue with my dad. My dad has been in a nh for almost 3 yrs so I

don't have any advice on night time cares. I wish you all the best and

pray for guidance for you. Please keep us posted, and you are added to

my growing prayer list.

Sandie

(dad is 65 and has been diagnosed 5 yrs)

Report post · September 16, 2002

>Anyway, todays been slightly easier and time will tell if we manage

>to persuade him to go to bed tonight. He seems quite tired so here's

>keeping our fingers crossed!

I am glad that your FIL was better today and hope that it

wasn't a chore to get him to bed. I hope he does go into the nh for

respite but know that sometimes you are fighting a lost battle...read

on.

I had a rough night with lady I take care of. I know this is a site

for LBD caregivers and she has Parkinson's but in the future it may

influence my patience with my husband, who does have LBD, will I have

any left. Her dementia is getting worse and lately she has been

wanting to stand up all of the time, so we keep her in the Merry

as much as possible. The other thing tonight was that she was

talking all of the time and I could only hear about every 5th or 6th

word, not enough to tell if she was making any sense. We used to

enjoy visiting so much and now it is just frustrating for both of us

and all of her other caregivers. We used to play 20 questions when it

was hard to hear her but that wasn't even working tonight. I only

worked for 6 hours, 4-10, but I feel like I have been there for 24

hours. Usually I am able to handle it much better then this but not

being able to hear her really got to me. There I feel better I needed

to blow off steam.

With all of the ups and downs and frustrations dealing with dementing

disease's, what we can be grateful for and maybe we need to think

about when times are tough is that the way these people used to be

delt with was to keep then so doped up that they didn't bother

anyone. I think I need to remind myself of that! Hugs to you, Barb

who needs an attitude adjustment in Wrangell.

Report post · September 16, 2002

Hello

My dad is on Rivastigmine too. It has helped him quite a lot actually.

I have moved my dad from Derby Royal Infirmary, where he had been for 2 months,

to be with us here in Tonbridge, Kent because I just couldn't keep commuting up

and down the country. That's fine but at the moment I feel quite alone as far as

medical back-up goes. I am waiting for the Community Mental Heath team here in

Tonbridge to pick up on us and obviously his doctors are miles away. It's not

all transferred as smoothly as I was assured it would. At the moment my dad's

house back in Derbyshire is locked up and watched over by neighbours. He wants

to go home and we are battling away with Social Services over the provision of

his 'care package'. Some days I can't ever imagine him coping with that at all.

In the meantime we care for him here - he is having major problems with tremors

at present so I shall be harassing the doctors about those this week!

My experience of this terrible disease is that it fluctuates so wildly therefore

you seem to swing from one idea to another and continually reappraise what to

do.

Like you we live on a farm ( my husband is the estate manager) he's off to

London to the protest march on Sunday. I have visited Dumfries - it is

astoundingly beautiful up there in the borders. We had friends living in Hawick

and Longtown.

Hope the respite care situation gets sorted.

Keep us informed

Sally xx

New Member

>

> Hi everyone,

>

> I've been reading some of your archive messages and it comes as a

> great relief to realise that there are other people out there

dealing

> with the same types of problems.

>

> To fill you in on our background: my father-in-law was diagnosed

with

> Lewy Bodies type dementia just over a year ago. That said his

decline

> has been fairly rapid. He now hallucinates almost constantly and

> finds it very hard to follow the simplest of conversation. He

stills

> lives in his own home but this is only possible as my husband

works

> on the farm 7 days a week and we live only a few hundred yards

from

> him. The social worker who has been appointed to us advises us we

> should try to keep him in his own environment for as long as

possible

> but she has now been off sick for three months and no one has

taken

> on her case load so we again feel we are out on a limb.

>

> Does anyone have any advice about dealing with night time

episodes?

> Dad has started to sleep a lot less and becomes considerably more

> agitated in the evenings. On Friday night he spent the whole

night

> try to rearrange the furniture in his house and last night

was

> unable to leave him as he pointblank refused to go to bed

> because " this is not my house " . This is happening more and more

> frequently with him.

>

> I noticed from some of your messages that some sufferes seem to

be

> aware of what is happening to them but Dad Does not believe there

is

> anything wrong with him and becomes very beligerent and angry

when we

> won't let him drive etc.

>

> He has had one episode of respite care in June and is now due to

go

> back into respite for a week to allow us to go on holiday for a

few

> days. He has decided however that he's " not going back into that

> place " even though it is a beautifully run, friendly nursing home.

>

> I guess it's the pressure of this and the guilt of wanting even a

> short time for ourselves as a family that has lead me to search

out

> this group.

>

> Does anyone have any experiences of a similar situation and how

you

> dealt with it?

>

> , Scotland

>

Report post · September 16, 2002

,

I am in the USA and don't know about cultural differences. I had my now

88 year old Mom with me for 3 years before she went into a nh out of the

hospital. And for 3 years she said she didn't think anything was wrong.

She also slept every other night the whole 3 years and continued that

for a long time when she went into the nh. There are some here who know

the meds better than I do and have meds that help their LO sleep. I did

use melatonin which is an OTC sleep aid and it started to work. The

other thing that worked was for me to lay down and pretend to sleep on

the couch near her. I would keep half an eye on her and wake her up if

she started to sleep in the chair. And she would then be convienced if

she was sleepy she should do it in bed. I do know there were some in

another group who got the lay back chairs and often their loved one who

wouldn't go to bed, would sleep in the recliner. It was the biggest

problem that I had and once in a while when I got just so tired, and

" lost it " it got even worse.

My mother is extreemly non-cooperative and redirecting worked much

better than asking or demanding.

Donna

To learn more about LBD Disease, please visit the Lewy Body Disease

Association site at:

http://www.lewybodydisease.org

Report post · September 16, 2002

>

> With all of the ups and downs and frustrations dealing with

dementing

> disease's, what we can be grateful for and maybe we need to think

> about when times are tough is that the way these people used to be

> delt with was to keep then so doped up that they didn't bother

> anyone. I think I need to remind myself of that! Hugs to you,

Barb

> who needs an attitude adjustment in Wrangell.

ok mom how is this for an attitude adjustment.....

you check in at 4:00 on January 5th and check out at 11:00 on

January 11th. You have a one bedroom first floor easy access condo

with a view of the ocean. Soooo cancel your second week at the

house and save some pennies. I have our condo reserved for the 31st

through the 5th. we can check and see also if they have rooms

available for that second week we can rent one for mike and his

family for approx $45.00 a night.

I know it is a little ways away but time will go fast and pretty

soon you will be here and it sounds like you need some uplifting

news right now

love you bunches

Report post · September 16, 2002

Hello and Sally

It is nice to see people here from other parts of the world. I know

when I first started looking at LBD sites it seemed all the

knowledgeable ones were in england. I have found more since but I

kept thinking you all were lucky to have so much first hand help

there however it seems you are in the same situations as we are over

here with having to educate and trial and error methods.

I was in England and Wales two years ago and absolutley adored it.

I can't wait to go back. The train ride from Wales to York was

gorgeous and even though I went alone I was lucky enough to have a

talkative gentleman next to me that gave me a history lesson as we

went.

Report post · September 17, 2002

Barb

Sending a hug of reassurance your way.

Sandie

Des Moines, IA

Report post · September 17, 2002

Barb

Sending a hug of reassurance your way.

Sandie

Des Moines, IA

Report post · September 17, 2002

Hello !

Let me make it clear to everyone out there MY experience of LBD treatment here

in the UK is just as 'hit and miss' as I've read from other parts of the globe.

Despite our 'wonderful' National Health Service I am handling this mostly on my

own - thank the Lord I have a supportive husband! The doctors this end are still

'experimenting' with the drug cocktail. It's all a bit of a 'try this and see'

situation as far as I can tell!

That's why this group is so important!!!

Love ya all

Sallyxxx

Re: New Member

Hello and Sally

It is nice to see people here from other parts of the world. I know

when I first started looking at LBD sites it seemed all the

knowledgeable ones were in england. I have found more since but I

kept thinking you all were lucky to have so much first hand help

there however it seems you are in the same situations as we are over

here with having to educate and trial and error methods.

I was in England and Wales two years ago and absolutley adored it.

I can't wait to go back. The train ride from Wales to York was

gorgeous and even though I went alone I was lucky enough to have a

talkative gentleman next to me that gave me a history lesson as we

went.

Report post · September 17, 2002

Hello . I am sorry to hear about your father-in-law. My MIL

(Mother-in-law) has had some of the same experiences. Sleep is key for

these patients. You may want to talk to his doctor about getting him on

another medication. My MIL has made remarkable progress (I mean she has

really changed for the better!) on Seroquel given at night. She now sleeps

all night and is so much better. She takes Risperidal in the afternoon

(very small amount - just .5mg) and 10mg of Aricept, and 30mg of Paxil.

This cocktail has by far worked the best for her. She no longer has any

hallucinations and talks to herself a lot less.

I hope the doctor can help you with medications. Good luck with things and

keep us posted. I will keep you and your family in my prayers and thoughts.

Take care,