Re: My experience with LBD

January 25, 2011

Hi Chezza,

Welcome to the group.

We are glad to have you.

I think that we have another member from Austrailia, so perhaps she may be able

to give you more resources in your area.

I do not know about the vaginal pain.

Take care of yourself and your Mum...this is a good place to learn and read

about others' experiences.

Joan

(North Las Vegas, NV Lost my Mom on April 13, 2008)

>

> 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.

>

January 26, 2011

Hi Chezza

I'm really sorry to hear of all the difficult times you have been having

with your mother, but she is very lucky to have you and your husband looking

after her and being her advocate in so many ways.

You did well to research LBD and discover this group. You will find that it

is a great source of information and support from friends who are on the

same journey, albeit at different stages. Another great thing about this

group is the realisation that you are not alone ...

I think I'm the Aussie that Joan was referring to!

Where do you live? I'm in Sydney - more specifically, North Sydney (just

over the Harbour Bridge in Cammeray).

To date I have met only one other person here in Sydney whose husband has

LBD, though I'm sure there must be more. I am not aware of any specific

support groups that meet 'in the real world' (and not the internet) ... yet!

I also have a former work colleague whose brother had LBD and he lived in

Adelaide and could find out from her if such groups exist there.

My husband has LBD - so the vaginal pain is not a symptom we have had!

However I can relate to the other symptoms of the stooped slow walk, the

depression, the lack of appetite. Jim doesn't dribble but his nose runs

without warning, especially if he bends over.

One of Jim's key symptoms is postural hypotension. He has been having many

falls, especially since Christmas and his legs have been losing their

strength, so that sometimes they just give way under him. On Sunday night I

had to call the ambulance to help get Jim off the bathroom floor and

yesterday afternoon I had to ask my neighbour and his strong teenage son to

help me again.

Yesterday was a very warm humid day and I struggled all day to keep him

hydrated. However by 7 pm he refused all offers of drink and food (=

watermelon, rockmelon or yoghurt) and he was becoming increasingly

delirious.

By 7.30 pm I was becoming very concerned at the way he was deteriorating so

quickly so I called the ambulance and he was taken to Emergency at Royal

North Shore Hospital. In spite of being on a drip since last night, he has

made no improvement and in fact seemed significantly more drowsy tonight and

has shown no sign of recognising me for 24 hours.

I'm apprehensive about how he will be tomorrow. On previous occasions he has

bounced back quite quickly once a drip was inserted, but this time I sense a

change. He has lost so much weight in the past 6 months so doesn't have the

reserves to draw on.

I dread the inevitable discussion with the doctors and social workers about

whether I can continue to care for him at home ....

So I'm just trying to take one day at a time.

Happy Australia Day everyone!

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.

January 26, 2011

Hi Chezza,

I am sorry you are in this terrible journey. But, am glad you found this

List.

My first thought about her pain is that blood may be becoming entrapped in

that area, because of spasms in the muscles. It is much like a man having

an erection in the Penis that won't go down. It can be very painful. It

doesn't mean that the person is consciously causing it. If your Mum has, or has

had, leg pain it may be all the same and one problem that has progressed

to that area.

(Just my uneducated guess)

Please keep us posted on how she is doing, and how you are doing. We can

at least give you moral support.

Love a lot,

Imogene

In a message dated 1/25/2011 6:35:34 P.M. Central Standard Time,

turnerngreen@... writes:

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.

January 26, 2011

Hi Sharon,

Thank you for your support, it must be scary for you after going thru it with

your Dad and now going thru it yourself. Stay strong.

Yes it was very hard in the beginning knowing if Mum was telling us what was

actually happening or was it happening in her mind.

By the way Chezza is my nickname my real name is Cheryl, my eldest son calls me

Chezza when he is being cheeky.

Bye for now

Chezza daughter of with LBD

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Sharon Murray

Sent: Wednesday, January 26, 2011 3:04 PM

To: LBDcaregivers

Subject: Re: My experience with LBD

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

From: Cheryl <turnerngreen@... <mailto:turnerngreen%40gmail.com> >

Subject: My experience with LBD

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

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.

January 26, 2011

Hi Elaine,

I'm in Baxter which is in Melbourne.

Yes this is very informative and I have learnt a lot.

I hope your husband is better today when you go to see him. The decision to

move your loved one to a Nursing Home is a very hard decision to make, I

still feel guilty about putting Mum in one, even though I know I wouldn't be

able to cope with her at home, but you have to believe it is best for them.

My only advice is to trust your instincts when you have to choose the home

and don't be worried about voicing yourself when it comes to his care.

The one Mum is in is good and they tell me they have had LBD patients

before, but I find it surprising at times the lack of knowledge about the

symptoms. When Mum started having the episode of where she cannot be roused

some of the staff thought she was faking it and trying to get attention. It

is better now that I have explained it is all part of the disease.

Happy Aussie Day for yesterday.

Cheryl (57) daughter of (79) with LBD.

PS We are originally from Sydney and have relatives spread around the

suburbs.

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Elaine Elliott

Sent: Wednesday, January 26, 2011 11:25 PM