RE: Re: My experience with LBD

[Guest guest]

Cheryl,

Have they tested for a UT Infection? Mom had them and I would forget until the

MD would tell me to bring her in and she usually had one.

Just a thougt.

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Re: My experience with LBD

Dear Chezza,

Your Mom sounds like an amazing person. I don't know about vaginal pain, but

my Mom experienced lots of stomach pain - and I believe that really was the

beginning of the Lewy Body. Is it possible that your Mom has lower stomach

pain that may be mistaken for vaginal pain?

You sound like such a wonderful daughter.

Hugs from snowy NY,

Helene

(Mom 76, about 10 years in with LBD)

>

> 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.

>

>

>

>

>

>

>

>