Re: My experience with LBD

[Guest guest]

Hi Cheeza,

My Mom is 87, and I put her in a nursing home 9 months ago.

She has LBD, probably for about a year and half now. I had

to diagnose her with this due to the signs I have seen, and this

group helping me identify these signs.

When u mentioned ur mom and the raping incident, my

Mom told me 2 weeks ago, that an aide at her home,

always stared at her naked body when he changed her diaper,

and it took him a long time to get her clothes on, she has had

a bad feeling about him from Day 1. She has always liked the

other aides. So I had a talk with the nurse, the director of

nurses, and so now I only have female aides waiting on her.

She even told me last week that 3 of the male aides were

harassing her and 1 female aide was at her bedside. My Mom

knows what is going on around her, but she also hallucinates

every day too. It makes it very hard on us as loved ones what

is true and what isn't. I just decided to talk about it, and tell

the nurses what I hear from her.

Good luck with your Mom, you are doing good to bring her home.

I haven't brought my home for an overnight stay. I can't, as when

she lived with me she would run away from my house a few times.

I wouldn't want to take no chances.

in Texas

Hi Everyone,

Like everyone else I had not heard of LBD until last year when my Mum was

diagnosed with it. Here is a little background:

My Mum was widowed at the age of 41, I was 19 and my brother was 14. After

this my Mum devoted her whole existence to my brother and I and later down

the track to our families. About 10 years ago Mum was diagnosed with

Parkinson's Disease. We read what we could and prepared ourselves (as well

as you can) for what was to happen.

All was going OK until nearly three years ago when my Mum's brother died.

This seemed to hit my hard. One night I received a call from her saying she

was scared and didn't know what of. My husband said to go and bring her to

our place (he has been my savior thru all this) which I did. From that

night

we have been on a downhill slide.

She didn't want to go " Home " she just wanted to spend 24/7 with me. She was

extremely nervous all the time and was having pain in her legs (which from

reading I now think they are Restless leg syndrome). We were getting

desperate to find help for Mum, there were a few visits to the Emergency

Rooms at hospitals but they would just send us home and tell us to see her

Neurologist who did nothing. By the way when we were at the hospitals they

would give Mum pain relief that seemed to make her worse.

Eventually we phoned the Parkinson Association who recommended we go to a

nearby clinic that specialize in Parkinson. Mum was admitted and they

started the assessment. They increased and or changed her medication and of

course she started to hallucinate and do all strange things like getting

aggressive with the staff. This went on for about two weeks and finally

they

said they couldn't help her and we had to admit her to a Nursing Home as I

work full time and the way Mum was she couldn't be left on her own.

Mum was still having the pains in her legs and it now moved to her vaginal

area as well. I had several fights with the Doctor at the Nursing Home as

nothing was changing, so we changed Neurologists and he at once lowered her

medication (he couldn't believe the amount she was on) and things seemed to

improve.

Mum would still have her " Off " days but she seemed better. We also took her

to a Psychiatrist who was absolutely lovely with her (she developed a bit

of

a crush on him.)

Still everything revolved around me and Mum would come up with these

stories

about how they were treating to her in the Nursing Home (we suspected it

was

so that I would take her out and bring her home to live with me) but I was

keeping a careful look at everything and although there were some Nurses

that were a bit snappy the majority are very good with the patients.

Then March 2010 my husband and I went for a 3 week trip overseas and when I

came back Mum was a mess and after I jumped up and down and changed the

Doctor in the Nursing Home for her lack of action .

We took Mum back to the Neurologist and when I explained the new lot of

symptoms Mum had he re-diagnosed her as having LBD and so a new learning

curve began.

On doing research I don't seem to find much information from Australia but

then I found the LBD website and from there I found your link and have

learnt a lot from reading your stories.

At this stage (which I am not sure of the stages of LBD Mum is at) Mum has

the following:

Stooped slow walk

Loss of appetite (she has developed a taste for Mc's strawberry

sundaes and every weekend when I bring her home for a visit I get her one.)

She seems to stick her tongue out and drools slightly

Depressed (she keeps telling me she wishes she could die as she has had

enough)

Bad pain in her vaginal area (The continually do tests for infections, she

has also had ultrasounds etc but nothing shows up)

Delusions (these are becoming more frequent. Last week she hit one of the

men patients over the head with her shoe as she said he was raping all the

ladies at night, she also refuses her medications as she thinks they are

poisoning her.)

Sleeping more thru the day, she has even been where they can't rouse her a

few times.

Oh well I have come to the end of my story so far. Does anyone have any

ideas as to the vaginal pain? I would appreciate any suggestions.

Bye for now

Chezza

From the land down under.

[Guest guest]

cheeza

what a pretty name, 

 

i am sorry you are going thru so  much iwht you mom,  all of the things you

are talkinga bout sound pretty much lbd. my daddy had lbd and i have it as well,

i am 50 and becuase i am seeing same doctor as daddy i have a diabnosis way

before most peopel do. 

 

hte 'sex' stuff is very much lbd, lbd affects the frontal lobe of hte brain ,t

hat is the part of the brain that knows right from wrong,  knows waht is

morally right/wrong, knows good/bad, and when that is damaged the lbd'er may

know that they should tell teh aid that he needs to 'make love to her,' but she

cannot stop herself.  there is no sense being mad she cannot control itk,  

iwnet thru that with daddy, he was very inappropraite to all his aides, that

werre larger breasted, he would grab them grinning and quite descirptively

describe waht he wanted to do, i was so embarassed, most o fhtem handled it

very well, saying now mr andersen you nkow thats not nice, you dont want me to

go awawy do you, 

 

the drooling  oh boy i know waht one,  i do it more than my daddy did.  the

lean also called the lewy lean, i dont ahve that but daddy did, we

both have the unexplained falls. and confurison,  i have gottne lost, yes i

still drive but not very often. donnie is usulaly with me. 

 

you mentioned strawberry milkshake daddy and i both crave sweets .  he could

ead a full size bag fof cookies, and a bag fo chips after a big lunch and

still at 530 eat a full dinner and ahve cake adn ice cream at 830 and sleep and

start teh next day and do it all over again,  he wouldnt gain  a pound as a

matter fo fact he lost weight  so i think that sweeet cravings, is part of

lbd, 

i crave them adn i am hunggry for them  i am not giaing weight but i am not

losing weight eitehr but then i again i am in the vvery early stgaes.  my

communications skills, is most affected as is my unexplained falls, and night

terrors, daddy had htem bad. 

 

good luck and hugs. sharon m 

Subject: My experience with LBD

To: LBDcaregivers

Date: Tuesday, January 25, 2011, 5:18 PM

 

Hi Everyone,

Like everyone else I had not heard of LBD until last year when my Mum was

diagnosed with it. Here is a little background:

My Mum was widowed at the age of 41, I was 19 and my brother was 14. After

this my Mum devoted her whole existence to my brother and I and later down

the track to our families. About 10 years ago Mum was diagnosed with

Parkinson's Disease. We read what we could and prepared ourselves (as well

as you can) for what was to happen.

All was going OK until nearly three years ago when my Mum's brother died.

This seemed to hit my hard. One night I received a call from her saying she

was scared and didn't know what of. My husband said to go and bring her to

our place (he has been my savior thru all this) which I did. From that night

we have been on a downhill slide.

She didn't want to go " Home " she just wanted to spend 24/7 with me. She was

extremely nervous all the time and was having pain in her legs (which from

reading I now think they are Restless leg syndrome). We were getting

desperate to find help for Mum, there were a few visits to the Emergency

Rooms at hospitals but they would just send us home and tell us to see her

Neurologist who did nothing. By the way when we were at the hospitals they

would give Mum pain relief that seemed to make her worse.

Eventually we phoned the Parkinson Association who recommended we go to a

nearby clinic that specialize in Parkinson. Mum was admitted and they

started the assessment. They increased and or changed her medication and of

course she started to hallucinate and do all strange things like getting

aggressive with the staff. This went on for about two weeks and finally they

said they couldn't help her and we had to admit her to a Nursing Home as I

work full time and the way Mum was she couldn't be left on her own.

Mum was still having the pains in her legs and it now moved to her vaginal

area as well. I had several fights with the Doctor at the Nursing Home as

nothing was changing, so we changed Neurologists and he at once lowered her

medication (he couldn't believe the amount she was on) and things seemed to

improve.

Mum would still have her " Off " days but she seemed better. We also took her

to a Psychiatrist who was absolutely lovely with her (she developed a bit of

a crush on him.)

Still everything revolved around me and Mum would come up with these stories

about how they were treating to her in the Nursing Home (we suspected it was

so that I would take her out and bring her home to live with me) but I was

keeping a careful look at everything and although there were some Nurses

that were a bit snappy the majority are very good with the patients.

Then March 2010 my husband and I went for a 3 week trip overseas and when I

came back Mum was a mess and after I jumped up and down and changed the

Doctor in the Nursing Home for her lack of action .

We took Mum back to the Neurologist and when I explained the new lot of

symptoms Mum had he re-diagnosed her as having LBD and so a new learning

curve began.

On doing research I don't seem to find much information from Australia but

then I found the LBD website and from there I found your link and have

learnt a lot from reading your stories.

At this stage (which I am not sure of the stages of LBD Mum is at) Mum has

the following:

Stooped slow walk

Loss of appetite (she has developed a taste for Mc's strawberry

sundaes and every weekend when I bring her home for a visit I get her one.)

She seems to stick her tongue out and drools slightly

Depressed (she keeps telling me she wishes she could die as she has had

enough)

Bad pain in her vaginal area (The continually do tests for infections, she

has also had ultrasounds etc but nothing shows up)

Delusions (these are becoming more frequent. Last week she hit one of the

men patients over the head with her shoe as she said he was raping all the

ladies at night, she also refuses her medications as she thinks they are

poisoning her.)

Sleeping more thru the day, she has even been where they can't rouse her a

few times.

Oh well I have come to the end of my story so far. Does anyone have any

ideas as to the vaginal pain? I would appreciate any suggestions.

Bye for now

Chezza

From the land down under.

[Guest guest]

linda,

 

my daddy started ahving 'issues' about unexplained falls in his early 60's he

went to teh same hopsital i currently go to and had mri's and ct's of the head,

done quite often trying to see tif there was brin issues and at that time  that

was in teh mid1990-s, the only thing that said was abnomral brain shrikage

rpdeominatly in teh frontal lobe area but they couldnt go further than that in

diagnoseis.  

 

dady diditna get a real diansosis until 2004 after 3 weeksn in teh hosp 2 weeks

in icu. 

 

in 2003 daddy and i began going to a new doctor here in pensaocla when i moved

here as i needed an md to monitor all my pain medicines.  our docotr is

wonderul bery thorough and will not send you to a specialist uniless hhe has

done evyerhing he can to get a proper dianostis.   he doesnt like to be in teh

'dark'  

 

well after daddy died in sept 05.  * i had spent from may 29=july 5 in hosp for

double kidney inf and then a stph infection checked out agfainst medical advise

as daddy fell and he refused to go to hops without me. * he was brouht by

amublance on july 5 to the hosp and had hip surgery th 6th of july for a hip

joint fracture.  the hipo was put basck in place an ds palte and screww was pu

tin to keep the ball in blace.  well daddy was to waer a brace for his hip but

his lbd mind wouldnt let him wear it,  now the man couoldnt walk bu this leg

and mind was so determined ot nget out ot eh brace that with trying to get out o

brace he bent a 1/4'' steel bracket to bend his knee. we opted no more surgery

and that was teh start of the end.  3 weeks altere daddy had a pulmonary

emboyls due to nh not giving htis blood htinners as perscribed and he was put

bacdk in the hosp he came thru that but was tottally uncommicateive and 100%

bedridden not even able to

sit in teh whceelchair to enjoy the childrens choirs ath woudl come to the nh

like he did for the 2 monhts before that,  daddy ied seevearl weeks alter. 

 

 

but anyway,  he and i went to the same docotr since 2003, adn we went ot the

same hopsital and even thoug when daddy had his scans done by other phsyciailns

they were read by the same radioloigst.    and my doctor and i sorta went

rounds with me belieivn i have lbd and my dloctor just hinking that i was

stressed adn didn watnt o belive it so he took me up on a 'bet'  to prove me

wrong. 

 

he called the radioloigst up and had him due a comparion of daddy sfilms and my

films and compare them and give his opionon on teh comparisons.  the doctor

noted taht we have idential shriakage of the brain and esp in teh frontal lobe

areaa.   he said he could litereelya put my xrays on top of my daddy and not

be able to tell teh two apart.  with ahtt adn givne the unexplained falls, and

the confusiona dn nigt terros and the fulctuiting cognition, like getting lost

coming home form teh fleamarket,  which i had been going to for 7 years almost

every weekend.  it is 'safe' to give me the disgnosis of lbd.  not hat it was

what i wanted but what i did expect.  andnow knowing what we learned from daddy

and his lbd, issues, and being that we have the same mederical doctor we know

what not to do, waht to try adn what to avoid.  adn my md, is great he has kep

up with all new reaarch on lbd as much as he can.  everyhing i get packet s

form the lbda to

distriube to physciians i give him one, incase the info has been updated.  we

have different issues to deal with s my idney disease and otehr health issues

definitely make working with my lbd difficult, but my doctof keep sup with the

medicaions and their newest warrings.  since having been dianosed with lbd

several medicines ahve wound up on my do not take list like phoereagn which gave

me server reflex tremosr,  which is the reflexes of your body twicth out of

control  my leg 'twitched to bad that i kicked a 10 sleeping dog out of the

bed  in the hopsital , i toally knocked a dinner tray off the table.  there

areseveral other meds taht i have reaced to which h adnt before.  so he is very

aware of al mey meds adn their RARE sdieeffets. 

 

i hope i have answered your questions, i fno t let me know and i will add ot

his  hugs. sharon

From: Cheryl <_turnerngreen@..._

(mailto:turnerngreen@...) >

Subject: My experience with LBD

To: _LBDcaregivers _ (mailto:LBDcaregivers )

Date: Tuesday, January 25, 2011, 5:18 PM

Hi Everyone,

Like everyone else I had not heard of LBD until last year when my Mum was

diagnosed with it. Here is a little background:

My Mum was widowed at the age of 41, I was 19 and my brother was 14. After

this my Mum devoted her whole existence to my brother and I and later down

the track to our families. About 10 years ago Mum was diagnosed with

Parkinson's Disease. We read what we could and prepared ourselves (as well

as you can) for what was to happen.

All was going OK until nearly three years ago when my Mum's brother died.

This seemed to hit my hard. One night I received a call from her saying she

was scared and didn't know what of. My husband said to go and bring her to

our place (he has been my savior thru all this) which I did. From that

night

we have been on a downhill slide.

She didn't want to go " Home " she just wanted to spend 24/7 with me. She was

extremely nervous all the time and was having pain in her legs (which from

reading I now think they are Restless leg syndrome). We were getting

desperate to find help for Mum, there were a few visits to the Emergency

Rooms at hospitals but they would just send us home and tell us to see her

Neurologist who did nothing. By the way when we were at the hospitals they

would give Mum pain relief that seemed to make her worse.

Eventually we phoned the Parkinson Association who recommended we go to a

nearby clinic that specialize in Parkinson. Mum was admitted and they

started the assessment. They increased and or changed her medication and of

course she started to hallucinate and do all strange things like getting

aggressive with the staff. This went on for about two weeks and finally

they

said they couldn't help her and we had to admit her to a Nursing Home as I

work full time and the way Mum was she couldn't be left on her own.

Mum was still having the pains in her legs and it now moved to her vaginal

area as well. I had several fights with the Doctor at the Nursing Home as

nothing was changing, so we changed Neurologists and he at once lowered her

medication (he couldn't believe the amount she was on) and things seemed to

improve.

Mum would still have her " Off " days but she seemed better. We also took her

to a Psychiatrist who was absolutely lovely with her (she developed a bit

of

a crush on him.)

Still everything revolved around me and Mum would come up with these

stories

about how they were treating to her in the Nursing Home (we suspected it

was

so that I would take her out and bring her home to live with me) but I was

keeping a careful look at everything and although there were some Nurses

that were a bit snappy the majority are very good with the patients.

Then March 2010 my husband and I went for a 3 week trip overseas and when I

came back Mum was a mess and after I jumped up and down and changed the

Doctor in the Nursing Home for her lack of action .

We took Mum back to the Neurologist and when I explained the new lot of

symptoms Mum had he re-diagnosed her as having LBD and so a new learning

curve began.

On doing research I don't seem to find much information from Australia but

then I found the LBD website and from there I found your link and have

learnt a lot from reading your stories.

At this stage (which I am not sure of the stages of LBD Mum is at) Mum has

the following:

Stooped slow walk

Loss of appetite (she has developed a taste for Mc's strawberry

sundaes and every weekend when I bring her home for a visit I get her one.)

She seems to stick her tongue out and drools slightly

Depressed (she keeps telling me she wishes she could die as she has had

enough)

Bad pain in her vaginal area (The continually do tests for infections, she

has also had ultrasounds etc but nothing shows up)

Delusions (these are becoming more frequent. Last week she hit one of the

men patients over the head with her shoe as she said he was raping all the

ladies at night, she also refuses her medications as she thinks they are

poisoning her.)

Sleeping more thru the day, she has even been where they can't rouse her a

few times.

Oh well I have come to the end of my story so far. Does anyone have any

ideas as to the vaginal pain? I would appreciate any suggestions.

Bye for now

Chezza

From the land down under.

[Guest guest]

Chezza, I wonder if your mom has a uti, if the vaginal pain is actually supra

pubic pain associated with bladder infection?

> >

> > Hi Everyone,

> >

> >

> >

> > Like everyone else I had not heard of LBD until last year when my Mum was

> > diagnosed with it. Here is a little background:

> >

> >

> >

> > My Mum was widowed at the age of 41, I was 19 and my brother was 14. After

> > this my Mum devoted her whole existence to my brother and I and later down

> > the track to our families. About 10 years ago Mum was diagnosed with

> > Parkinson's Disease. We read what we could and prepared ourselves (as well

> > as you can) for what was to happen.

> >

> > All was going OK until nearly three years ago when my Mum's brother died.

> > This seemed to hit my hard. One night I received a call from her saying she

> > was scared and didn't know what of. My husband said to go and bring her to

> > our place (he has been my savior thru all this) which I did. From that night

> > we have been on a downhill slide.

> >

> >

> >

> > She didn't want to go " Home " she just wanted to spend 24/7 with me. She was

> > extremely nervous all the time and was having pain in her legs (which from

> > reading I now think they are Restless leg syndrome). We were getting

> > desperate to find help for Mum, there were a few visits to the Emergency

> > Rooms at hospitals but they would just send us home and tell us to see her

> > Neurologist who did nothing. By the way when we were at the hospitals they

> > would give Mum pain relief that seemed to make her worse.

> >

> >

> >

> > Eventually we phoned the Parkinson Association who recommended we go to a

> > nearby clinic that specialize in Parkinson. Mum was admitted and they

> > started the assessment. They increased and or changed her medication and of

> > course she started to hallucinate and do all strange things like getting

> > aggressive with the staff. This went on for about two weeks and finally they

> > said they couldn't help her and we had to admit her to a Nursing Home as I

> > work full time and the way Mum was she couldn't be left on her own.

> >

> >

> >

> > Mum was still having the pains in her legs and it now moved to her vaginal

> > area as well. I had several fights with the Doctor at the Nursing Home as

> > nothing was changing, so we changed Neurologists and he at once lowered her

> > medication (he couldn't believe the amount she was on) and things seemed to

> > improve.

> >

> >

> >

> > Mum would still have her " Off " days but she seemed better. We also took her

> > to a Psychiatrist who was absolutely lovely with her (she developed a bit of

> > a crush on him.)

> >

> >

> >

> > Still everything revolved around me and Mum would come up with these stories

> > about how they were treating to her in the Nursing Home (we suspected it was

> > so that I would take her out and bring her home to live with me) but I was

> > keeping a careful look at everything and although there were some Nurses

> > that were a bit snappy the majority are very good with the patients.

> >

> >

> >

> > Then March 2010 my husband and I went for a 3 week trip overseas and when I

> > came back Mum was a mess and after I jumped up and down and changed the

> > Doctor in the Nursing Home for her lack of action .

> >

> >

> >

> > We took Mum back to the Neurologist and when I explained the new lot of

> > symptoms Mum had he re-diagnosed her as having LBD and so a new learning

> > curve began.

> >

> >

> >

> > On doing research I don't seem to find much information from Australia but

> > then I found the LBD website and from there I found your link and have

> > learnt a lot from reading your stories.

> >

> >

> >

> > At this stage (which I am not sure of the stages of LBD Mum is at) Mum has

> > the following:

> >

> >

> >

> > Stooped slow walk

> >

> > Loss of appetite (she has developed a taste for Mc's strawberry

> > sundaes and every weekend when I bring her home for a visit I get her one.)

> >

> > She seems to stick her tongue out and drools slightly

> >

> > Depressed (she keeps telling me she wishes she could die as she has had

> > enough)

> >

> > Bad pain in her vaginal area (The continually do tests for infections, she

> > has also had ultrasounds etc but nothing shows up)

> >

> > Delusions (these are becoming more frequent. Last week she hit one of the

> > men patients over the head with her shoe as she said he was raping all the

> > ladies at night, she also refuses her medications as she thinks they are

> > poisoning her.)

> >

> > Sleeping more thru the day, she has even been where they can't rouse her a

> > few times.

> >

> >

> >

> > Oh well I have come to the end of my story so far. Does anyone have any

> > ideas as to the vaginal pain? I would appreciate any suggestions.

> >

> >

> >

> > Bye for now

> >

> >

> >

> > Chezza

> >

> > From the land down under.

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

, thank you for your loving comments.

You have had some difficult moments caring for your mother ... and how hard

it must be for your mother to experience such frightening hallucinations and

dreams, not to mention so many fractures.

I often try to put myself in the shoes of those who suffer with LBD and I

find it heartbreaking, especially when they are still aware of what they are

going through.

Thankfully my dear Jim is peaceful as he walks the last stage of his

journey.

Last night I spent a lot of time emailing family and friends to let them

know what is happening. It was a sobering time as the reality sank in that

Jim is dying.

Although I have prepared myself as much as possible for this time, now that

it is here I find it somewhat surreal. I feel as though life is playing in

slow motion at the moment. After days and months of being full-time carer,

when you are run off your feet at times and always being on red alert in

case he is going to the bathroom or getting out of bed and about to fall

over .... I am now sitting with him reading or doing crosswords or sudokus

to keep my brain alert, listening to the cds I have brought in from home for

him as soothing background music or just sitting there reminiscing. It's

peaceful in so many ways yet so sad.

My first husband died suddenly so that experience was dominated by shock and

numbness. Now I am cherishing the opportunities to walk this journey with

Jim.

Yes it is summer here in Australia and we are experiencing quite a different

one this year. Last year fires dominated, but this year it is floods which

are breaking the droughts. Here in Sydney we have been spared these dramatic

extremes of nature this summer. However, my sister in Perth and my son in

northern Queensland are both preparing for cyclones to strike land where

they live. Thankfully after a very warm and humid week, Sydney is cool this

morning with a light rain. It will be lovely to walk through this rain

before entering the artificial atmosphere of the hospital!

Elaine (61) from Sydney Australia

Caring for husband Jim (82) who was offically diagnosed LBD Oct 2009, but

symptoms began at least 5 years before.

[Guest guest]

Hi Chezza

Thank you for your helpful comments about choosing a nursing home.

I can understand the guilt feelings you must have to process, but I'm so

glad you can balance these with the knowledge that you have done the best

thing for your mother.

Somewhere I have seen a document that writes about LBD from the viewpoint of

the patient, and not the carer. It was prepared by someone for the staff at

the nursing home where their mother was, because they had no idea how to

treat her. I don't have time right now to find it in Group files but I will

email it to you separately. It is very good.

The way things are going here, I don't think I will have to worry about

making this decision for Jim. I called in to see our GP yesterday and he

told me that as long as Jim is on a drip, the nursing homes won't want a bar

of him ... and with Jim not eating or drinking, it seems inevitable that the

drip is going to be a permanent fixture. I am thankful for this. It is one

less thing to worry about.

Elaine (61) from Sydney Australia

Caring for husband Jim (82) who was offically diagnosed LBD Oct 2009, but

symptoms began at least 5 years before.

[Guest guest]

Hi Chreyl,

I have spinal injuries. I know that my back is bad, but along with that comes

pains and sensations at other parts of my legs, feet, arms, even horrific

headaches. It could be possible that the pains she is feeling are real...just

no reason as far as the doctors looking for the obvious.

Has your Mom ever had a back problem. Perhaps she has some osteoporosis which

is pinching a nerve? Believe it or not, when I get upset about something or if

I am really stressed, I do start to feel more pains and sometimes new pains and

it all goes back to the spine which sends the message to the brain that she has

a pain.

> >

> > Hi Everyone,

> >

> >

> >

> > Like everyone else I had not heard of LBD until last year when my Mum was

> > diagnosed with it. Here is a little background:

> >

> >

> >

> > My Mum was widowed at the age of 41, I was 19 and my brother was 14. After

> > this my Mum devoted her whole existence to my brother and I and later down

> > the track to our families. About 10 years ago Mum was diagnosed with

> > Parkinson's Disease. We read what we could and prepared ourselves (as well

> > as you can) for what was to happen.

> >

> > All was going OK until nearly three years ago when my Mum's brother died.

> > This seemed to hit my hard. One night I received a call from her saying

> she

> > was scared and didn't know what of. My husband said to go and bring her to

> > our place (he has been my savior thru all this) which I did. From that

> night

> > we have been on a downhill slide.

> >

> >

> >

> > She didn't want to go " Home " she just wanted to spend 24/7 with me. She

> was

> > extremely nervous all the time and was having pain in her legs (which from

> > reading I now think they are Restless leg syndrome). We were getting

> > desperate to find help for Mum, there were a few visits to the Emergency

> > Rooms at hospitals but they would just send us home and tell us to see her

> > Neurologist who did nothing. By the way when we were at the hospitals they

> > would give Mum pain relief that seemed to make her worse.

> >

> >

> >

> > Eventually we phoned the Parkinson Association who recommended we go to a

> > nearby clinic that specialize in Parkinson. Mum was admitted and they

> > started the assessment. They increased and or changed her medication and

> of

> > course she started to hallucinate and do all strange things like getting

> > aggressive with the staff. This went on for about two weeks and finally

> they

> > said they couldn't help her and we had to admit her to a Nursing Home as I

> > work full time and the way Mum was she couldn't be left on her own.

> >

> >

> >

> > Mum was still having the pains in her legs and it now moved to her vaginal

> > area as well. I had several fights with the Doctor at the Nursing Home as

> > nothing was changing, so we changed Neurologists and he at once lowered

> her

> > medication (he couldn't believe the amount she was on) and things seemed

> to

> > improve.

> >

> >

> >

> > Mum would still have her " Off " days but she seemed better. We also took

> her

> > to a Psychiatrist who was absolutely lovely with her (she developed a bit

> of

> > a crush on him.)

> >

> >

> >

> > Still everything revolved around me and Mum would come up with these

> stories

> > about how they were treating to her in the Nursing Home (we suspected it

> was

> > so that I would take her out and bring her home to live with me) but I was

> > keeping a careful look at everything and although there were some Nurses

> > that were a bit snappy the majority are very good with the patients.

> >

> >

> >

> > Then March 2010 my husband and I went for a 3 week trip overseas and when

> I

> > came back Mum was a mess and after I jumped up and down and changed the

> > Doctor in the Nursing Home for her lack of action .

> >

> >

> >

> > We took Mum back to the Neurologist and when I explained the new lot of

> > symptoms Mum had he re-diagnosed her as having LBD and so a new learning

> > curve began.

> >

> >

> >

> > On doing research I don't seem to find much information from Australia but

> > then I found the LBD website and from there I found your link and have

> > learnt a lot from reading your stories.

> >

> >

> >

> > At this stage (which I am not sure of the stages of LBD Mum is at) Mum has

> > the following:

> >

> >

> >

> > Stooped slow walk

> >

> > Loss of appetite (she has developed a taste for Mc's strawberry

> > sundaes and every weekend when I bring her home for a visit I get her

> one.)

> >

> > She seems to stick her tongue out and drools slightly

> >

> > Depressed (she keeps telling me she wishes she could die as she has had

> > enough)

> >

> > Bad pain in her vaginal area (The continually do tests for infections, she

> > has also had ultrasounds etc but nothing shows up)

> >

> > Delusions (these are becoming more frequent. Last week she hit one of the

> > men patients over the head with her shoe as she said he was raping all the

> > ladies at night, she also refuses her medications as she thinks they are

> > poisoning her.)

> >

> > Sleeping more thru the day, she has even been where they can't rouse her a

> > few times.

> >

> >

> >

> > Oh well I have come to the end of my story so far. Does anyone have any

> > ideas as to the vaginal pain? I would appreciate any suggestions.

> >

> >

> >

> > Bye for now

> >

> >

> >

> > Chezza

> >

> > From the land down under.

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Elaine,

I love when you post...you have such a gift for putting thoughts into text.

Yes, there is a time when we know that the end is near. That time is both very

sad and very consoling. I know that when your dear Jim, wins his battle with

this disease that you will be relieved that he is no longer suffering with this

disease...but yet you will miss his physical presence so much. I am glad that

you have family and friends to be there for you during this journey. There comes

a time when we no longer direct our prayers as prayers to heal, but prayers for

Him to have mercy on our LOs and stop the suffering so that they can go be in

the peaceful meadows of eternal life.

Prayers and hugs from North Las Vegas, NV where it was quite warm today!

Joan

>

> , thank you for your loving comments.

>

> You have had some difficult moments caring for your mother ... and how hard

> it must be for your mother to experience such frightening hallucinations and

> dreams, not to mention so many fractures.

>

> I often try to put myself in the shoes of those who suffer with LBD and I

> find it heartbreaking, especially when they are still aware of what they are

> going through.

>

> Thankfully my dear Jim is peaceful as he walks the last stage of his

> journey.

>

> Last night I spent a lot of time emailing family and friends to let them

> know what is happening. It was a sobering time as the reality sank in that

> Jim is dying.

>

> Although I have prepared myself as much as possible for this time, now that

> it is here I find it somewhat surreal. I feel as though life is playing in

> slow motion at the moment. After days and months of being full-time carer,

> when you are run off your feet at times and always being on red alert in

> case he is going to the bathroom or getting out of bed and about to fall

> over .... I am now sitting with him reading or doing crosswords or sudokus

> to keep my brain alert, listening to the cds I have brought in from home for

> him as soothing background music or just sitting there reminiscing. It's

> peaceful in so many ways yet so sad.

>

> My first husband died suddenly so that experience was dominated by shock and

> numbness. Now I am cherishing the opportunities to walk this journey with

> Jim.

>

> Yes it is summer here in Australia and we are experiencing quite a different

> one this year. Last year fires dominated, but this year it is floods which

> are breaking the droughts. Here in Sydney we have been spared these dramatic

> extremes of nature this summer. However, my sister in Perth and my son in

> northern Queensland are both preparing for cyclones to strike land where

> they live. Thankfully after a very warm and humid week, Sydney is cool this

> morning with a light rain. It will be lovely to walk through this rain

> before entering the artificial atmosphere of the hospital!

>

>

>

> Elaine (61) from Sydney Australia

>

> Caring for husband Jim (82) who was offically diagnosed LBD Oct 2009, but

> symptoms began at least 5 years before.

>

>

>

>

>

>

>

>

[Guest guest]

Dear Elaine,

You are so young to be going through the loss of a second husband. I am

relieved to hear you sounding at peace with the end of his journey and that he

is peaceful as well. I am sorry that you are going through this and you know

many here are with you in heart.

>

> , thank you for your loving comments.

>

> You have had some difficult moments caring for your mother ... and how hard

> it must be for your mother to experience such frightening hallucinations and

> dreams, not to mention so many fractures.

>

> I often try to put myself in the shoes of those who suffer with LBD and I

> find it heartbreaking, especially when they are still aware of what they are

> going through.

>

> Thankfully my dear Jim is peaceful as he walks the last stage of his

> journey.

>

> Last night I spent a lot of time emailing family and friends to let them

> know what is happening. It was a sobering time as the reality sank in that

> Jim is dying.

>

> Although I have prepared myself as much as possible for this time, now that

> it is here I find it somewhat surreal. I feel as though life is playing in

> slow motion at the moment. After days and months of being full-time carer,

> when you are run off your feet at times and always being on red alert in

> case he is going to the bathroom or getting out of bed and about to fall

> over .... I am now sitting with him reading or doing crosswords or sudokus

> to keep my brain alert, listening to the cds I have brought in from home for

> him as soothing background music or just sitting there reminiscing. It's

> peaceful in so many ways yet so sad.

>

> My first husband died suddenly so that experience was dominated by shock and

> numbness. Now I am cherishing the opportunities to walk this journey with

> Jim.

>

> Yes it is summer here in Australia and we are experiencing quite a different

> one this year. Last year fires dominated, but this year it is floods which

> are breaking the droughts. Here in Sydney we have been spared these dramatic

> extremes of nature this summer. However, my sister in Perth and my son in

> northern Queensland are both preparing for cyclones to strike land where

> they live. Thankfully after a very warm and humid week, Sydney is cool this

> morning with a light rain. It will be lovely to walk through this rain

> before entering the artificial atmosphere of the hospital!

>

>

>

> Elaine (61) from Sydney Australia

>

> Caring for husband Jim (82) who was offically diagnosed LBD Oct 2009, but

> symptoms began at least 5 years before.

>

>

>

>

>

>

>

>