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Carers UK Forum • Lewy Bodies Dementia queries
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Lewy Bodies Dementia queries

Posted: Sat Dec 15, 2012 10:54 am
by jane5023
Mum went to the neurologist this week- he is still reluctant to give her condition a name but the above was mentioned as her confusion seems to fluctuate so much. When i collected her for the appt, she was adamant that it had been cancelled and that she had cancelled it whilst in an ambulance! She also thought that the staff were playing tricks on her, but by the time we arrived at hosp, the conversation with the consultant was pretty normal- some uncertainty re sequence of events in last 6 months, but otherwise fine. However, by the time we were back in the car again, she asked several random questions about fictitious dialling codes...This behaviour coupled with falls and a worsening ability to walk- any thoughts please? The nurses have dismissed UTI being to blame as the confusion should last forthe duration of the UTI apparently.Consultant is going to try a drug(can't remember what it is called beginning with R) and wants to see us in 6 weeks but says from July when he saw her last, she didnt appear much worse-I disagree(vivid dreams, not recognising grandson who lives nearby etc

Re: Lewy Bodies Dementia queries

Posted: Sat Dec 15, 2012 4:20 pm
by susieq
Hi Jane,

see the link below for information on Lewy Bodies dementia -

http://www.alzheimers.org.uk/site/scrip ... mentID=113

and I think the drug the neurologist referred to is Reminyl.

Also have a read of 'Norrms Blog' in the Dementia section of the forum. Norman McNamarra was first diagnosed with Early Onset Alzheimer's which was later amended to Lewy Bodies Dementia and he writes in his blog from the victim's point of view - it might help you to understand from your Mum's viewpoint.

Re: Lewy Bodies Dementia queries

Posted: Thu Dec 20, 2012 12:05 pm
by Guest
It sounds like she has the very same symptoms that my mum has and she has Parkinson's dementia and Alzheimer's. She has been prescribed Rivastigmine so it may be that.

Re: Lewy Bodies Dementia queries

Posted: Fri Dec 21, 2012 10:06 pm
by Guest
my husband has parkinsons and has been told he has mixed dementia. He is very similar he often answers all the questions at his appointments with flying colours. As soon as we get home he is very confused again and often can't even remember the names of everyday items. It is often very frustrating and upsetting. He has become noticibly worse the last couple of months. The parkinsons doctor and memory clinic doctor have tried changing and altering the dose of his medication but it is making no difference.