- I'm in England!

[Guest guest]

I noticed posts from you, from your Cotswolds home.

Very beautiful!

I am in Tonbridge in Kent. My dad died of suspected Diffuse Lewy Body Disease in

October 2002. He was 67 years old.

I think he had had the disease for approx 4-5 years. It wasn't too bad at first

and the drug treatment seemed to help.

At first he started with a very slight tremor in the neck and head, occasional

confusion and muddled speech. We put it down to old age!! Then the tremors moved

into his arm. Parkinson's was suspected but ruled out. Then he started

hallucinating and the whole ball game changed! Suddenly in Aug 2001 we were

under community psychiatric care and the words 'Lewy Body' entered our

vocabulary. We knew NOTHING about it.

My dad was put on Olanzipine - which helped. He stayed fairly 'steady' for 6

months. The hallucinations calmed down but the agitation, muscle stiffness and

rigidity, falling over, word muddling and sequencing went berserk. AND worst of

all the tremors got worse. He had a sort of mental breakdown in Feb 2002. He

couldn't write. He had trouble dressing himself

shaving. He drooled. He was paranoid about certain harmless things e.g. the

mail. He was terrified of brown envelopes.

In June 2002 they suddenly changed medication from Olanzipine to Quetiapine.

Mmmmmm!!! It all started going really bad!!!

His tremors were violent - he literally thrashed about. He could hardly walk. He

was stiff and confused. It was dreadful.

My dad was hospitalised in July - into Derby Royal Infirmary.

He was put on Exelon - which did him a lot of good. It really helped the

confusion but physically he was in POOR state.

I moved him in with me to nurse him but after 3 weeks he suffered a sort of

'freeze up' and was rushed to Kent and Sussex hospital in Tunbridge Wells. They

were useless - had no idea what to do! They resorted to doses of Lorazepam

(Ativan)

to sedate him. He got violent, aggressive, abusive - he hit me and swore at me.

He became like a wild animal. Then he started refusing all food, water and meds.

He could barely swallow. He lay in a semi-coma for several days. They tried to

rehydrate him but he died of a pulmonary embolus - it was pretty ugly.

He talked gibberish towards the end - could not stand up.

I don't want to frighten you or upset you but when I was in your position

I wanted people to tell me the whole truth about this wretched disease and THANK

GOD I found this group. They have been my life savers!!! I could not cope

without them. I love them all. Even though I lost my dad I still can't leave

this group I need them just as much! You will be so glad you found this haven

too.

As we are both in the UK you could call me.

If you would like to contact me direct mail me at northfrith@... and I

will email you my number.

If you were nearer I would come and help.

Lovely to see some more Brits on this site!

Take care Sally xxx