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Still struggling for a diagnosis

Sharon123

Registered User
Feb 12, 2013
7
0
Whyteleafe
My Dad was diagnosed with Parkinson's Disease 9 years ago, but his mental health really declined shortly after, Dad has been sectioned 4 times now and my sister and I are convinced the dad has Lewy Body Dementia not PD, but getting so called specialists to look beyond the PD diagnosis is like pulling teeth. Dad spent a collosal 8.5 months in hospital in 2012 (mental health and Normal hospital) and then was moved into a nursing home in Jan 2013 he was told for respite, however my sister and I knew it had to be a permanent move, as Dad could no longer look after himself, we've now had a situation whereby he is becoming even more aggressive, delusional and is hallucinating all the time practically that he has been sectioned yet again, and the nursing home have said they can no longer cope and Dad cannot return!! The mental health team keep trying him on different anti psychotics but he seems sensitive to these, and his Parkinsonism is getting worse. He is on Rivastigmine, quetiapine and they just started him on Arapripasol too, however they are now talking about trying Clozapine. I am really worried what these drugs could do to him should a diagnosis of LBD be made!

Does anyone have any advice, the stress is making me feel very ill and I am a single parent who works full time and I am desperate to have my poor Dad settled.
 

Haylett

Registered User
Feb 4, 2011
1,145
0
Sharon, what a stressful situation for you all and how upsetting. There are members here who are very knowledgeable about medication - I hope they might be able to shed some light on the cocktail that your father is having to take - and maybe give you some idea of what questions to ask on his behalf. I hope you find a specialist who will listen to your concerns and conduct a thorough investigation on what exactly is going on.
 

RobinH

Registered User
Apr 9, 2012
264
0
London
What is dementia with Lewy bodies (DLB)?

Hi Sharon

I don't know if you've seen the information page on LBD but reading this, it looks like the two diseases are linked, so doctors seeing one should be looking for the other. Have you tried your local Alzheimers or Mind people? It does sound like getting a correct diagnosis will help get him the right care.

You also need to look after yourself - you can't help him if you're exhausted or ill. Maybe try a local carers' support group. Let your GP know you are a carer - they're meant to be looking out for the health of carers, who often sacrifice their own health while trying to do their best for their friend or relative.

Good luck.

Robin
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Hi Sharon, I just wanted to say welcome to the forum and I'm sure there will be others with more experience than me along shortly to add to the excellent advice you have already been given. Do keep posting x
 

Sharon123

Registered User
Feb 12, 2013
7
0
Whyteleafe
Thank you all for your messages, we are hopefully getting somewhere, unfortunately dad was blue lighted to hospital yesterday because he had a droop to the left side of his face, it seems he may have had a minor stroke, we are now visiting the TIA clinic, and they are now linking the possibility of DLB and PD, and this caused the minor stroke. We should know more by Wednesday fingers crossed! Xx