- the mystery of LBD

[Guest guest]

Hi

Welcome to the group - I'm so glad that you weren't put off by the overload of

posts! We will do all we can to help you.

I'm in the UK. I cared for my dad who had diffuse LBD. He died Oct 2002 aged 67

years.

LBD is a monster - made worse by the fact that there are no hard and fast

answers to your questions. Lewy Body is unique in every sufferer.

It twists and turns and contorts ... one day up, next day down. It is a roller

coaster ride. What works one day may be hell the next!

There are no drugs specifically for LBD - you are constantly monitoring a

cocktail of drugs and adjusting when necessary.

My advice is keep a daily journal/log book and note everything - drugs,

behaviours, changes, good & bad days, sleepiness, fatigue, aggression, appetite,

mood, mobility .... it helps SO much when you get to see the doctors. You get so

stressed as a carer, you forget things in the blur of coping.

I am not sure how long my dad had LBD. I think 8 - 9 years. It came on slow,

undetectably. He had episodes when it was 'bad' for a time and then he

plateaued. In the final year he plummeted. It was fast.

First signs pointed towards Parkinson's; mobility problems, lack of spatial

awareness, constantly tumbling and tripping up, a TINY tremor in his neck,

chronic fatigue and moodiness coupled with restless legs and disturbed sleep.

The tremor got worse (BUT not all LBD patients have tremor - some here don't)

and he started getting anxious, paranoid, argumentative and forgetful. One big

indicator was the word muddling ... he would get sentences muddled up and forget

what everyday things were called. For example he would point at the TV and call

it a yoghurt. He was very frustrated.

THEN ... the hallucinations set in. They were VERY real to him. We had animals

in the house, children running around, intruders in his bedroom .... it was hell

with those!

Once the hallucinations were full swing the doctors turned away from Parkinson's

and thought more towards LBD. My dad also had major back surgery and other minor

operations in a space of 5 years about 7-8 years before he died. He was always

worse after general anaesthetic and many here can testify that general aneas.

made their loved ones worse.

You need a neurologist and a psychiatrist who specialises in geriatric dementia

WHO KNOWS ABOUT LBD to give you a full assessment.

You may have to fight for it but folks here will know who/where to recommend you

to go.

We'll be here to support you

Ask us ANYTHING -

Hugs to you

Sally x