Welcome

[Guest guest]

Lovely to 'meet' you and to learn a little about your mum.

My dad died October21st 2002 after having LBD for approximately 5 years. He

wasn't diagnosed till about 14 months ago - he'd been wrongly treated for the

start of Parkinsons at first.

Because I am British and live in the UK I can't offer much help with the medical

aid stuff. But there are many here who have expert insight into all that. We are

always willing to be honest - no matter how painful I believe as carers that we

need to know the whole picture and not go along with some of the 'expert'

b***s*** - pardon my language!

You ask if we can tell you what to expect, what lies ahead.

Well - it's going to be tough and very painful. You will find yourself on a

helter skelter ride! This disease is wicked - it takes you by surprise and you

can never predict the twists and turns in the journey. LBD is unique in every

sufferer. There are similarities and we share those here.

We compare experiences and share strategies but no two LO's are ever the same.

Understanding the drugs is difficult and finding a good neurologist with a

proper appreciation of this evil disease is very tough.

BUT stick with us! Between us we have loads to share and offer you our love and

support in every way we can. Even from this distance!!!

My immediate advice is keep a journal, a detailed log book. Write down every

drug, dose, time, behaviour, change etc. Don't automatically accept so called

'expert' advice. Think long and hard about medications. As a carer you have an

excellent internal barometer - called 'gut feelings' and you are wise not to

ignore those!

Vent here. Ask here. No question is ever too silly or too serious.

Keep in touch

Love to you and your family

Sally xx