My experience with LBD

[Guest guest]

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.