Greetings!

[Guest guest]

Hi all.

I've been meaning to introduce myself and thought 'why not now'?

My father was diagnosed with Parkinson's less than a year ago. He's been

steadily - and quite rapidly - going downhill. When I met his

neurologist for the first time a few months ago, I told my parents we

won't be needing his services anymore. He was very obviously not

interested in helping my father. I tracked down a neurologist at

Sydney's RPA Hospital who is also part of the BMRI (Brain & Mind

Research Institute) who specialises in Parkinson's. Last week, within

minutes of our visit to him, we knew we'd done the right thing. After

1.5 hours of questions and seeing Dad walk, he diagnosed my father with

LBD. He's advised that my father's Parkinson's meds (Sifrol is one) will

need to be reduced as they can, and most probably have, made Dad's

symptoms worse. In a few months, if Dad hasn't improved, he will put him

on a med for Alzheimers. He didn't say what that med was, but I guess we

will see. He mentioned REM Behaviour Disorder (Dad sometimes wakes at

2am and cooks himself breakfast) and when he mentioned the drug, I wrote

it down as (phonetically) 'clamazipan'. I saw a similarly-spelled drug

mentioned on here in a negative way so I'm hoping they're not one and

the same drug.

It's been very strange being given an LBD diagnosis after only just

coming to terms with the idea of Parkinson's and we have so much yet to

learn but I'm willing to do whatever I can to educate myself so that I

can help my father. Seeing him go from a fairly normal man in his 70s to

an 'old' man within the space of a couple of years has been

heartbreaking for myself, my mother and my brothers.

One of my brothers is a psychiatric nurse and even he hadn't heard of

LBD. Thankfully Dad has a great GP who is overseeing everything. Even

the LBD has to take a back seat at the moment as my father has heart

problems which are even more urgent. He also has prostate cancer (under

control with meds) and diabetes (also under control) but it seems that

LBD is the thing causing the most noticeable symptoms.

I'm reading every single message on here and will continue to do so.

We are all quite worried, not to mention fearful, of what lies ahead. We

promised Dad we would never put him into a nursing home. Has anyone else

been able to look after a loved one with LBD at home? If so, I'd be

interested to hear how that went.

Thank you for this group and I'm looking forward to getting to know you

all.

Peace.

Tania (Goulburn, NSW, Australia)