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Parkinsons Dementia

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Natasha
Parkinsons Dementia

Hi carers,

It seems that all the posts are regarding parkinsons but not parkinsons dementia Are there anyone with first hand experience of this complaint with whom I can exchange ideas etc... regarding the above.

Anticipated thank you!

Natasha

platespinner

Hi Natasha,

My mum had a diagnosis of Lewy Body Dementia having had Parkinson's diagnosed for some 7 years prior to that. She died 18 months after her LBD diagnosis.

I found a lot of information from the Alzheimer's Society website about how to deal with the issues raised by LBD, both understanding it and how to support Mum better and find ways round the problems. Although called Alzheimer's Society, it covers all types of dementia. It also provides information about how to seek support and financial issues.

There seems to be a slight distinction between PDD and LBD, but there are a lot of similarities in terms of all dementia problems.

I hope that might help you a little.

Natasha

Thank you so much Platespinner and have a good day!

Natasha

Natasha

Am I then the only carer to deal with parkinson dementia?
It is hard to believe and I was hoping to exchange posts with people on the forum
not only referring to a website. This makes me even more isolated than I am already. Sad!

platespinner

Dear Natasha,

I suggested the AS website as I had tried the PD one when it came to my mum's problems, but wasn't able to find anything relating to my/my mum's issues; when I googled certain phrases I found matches taking me to the AS site.

My mum's PD was very much declining, and it seemed that writing of the more negative aspects and end-stage PD with LBD was not appropriate here - it seemed this is more geared towards managing diagnosis/meds/symptoms in earlier stages; my doom and gloom felt wrong in amongst those trying to keep positive. On the AS site the worst has already happened - the diagnosis of dementia - and the prognosis in that situation is primarily only about decline and its management.

My response to you equally felt inappropriate - suggesting another website - but that was where I got the information and support I needed. There are websites for PDD/LBD, very often American based, but again its all out there if you find those help you in any way.

Perhaps there are others who use this forum who will feel able to step forward and discuss this with you. I am happy to share my experiences with you - please do post if there is anything in particular you wanted to know about.

platespinner

oops, meant to add - the AS website has a brilliant forum with very helpful and supportive members - its not just a site for information. You would find others to share experiences with there - there are several members who are dealing with this.

worrals

Hello Natasha

I fear my husband has Parkinsons dementia but I have not yet been told that he is suffering from it, although in our previous area (we have recently moved - which hasn't helped)he was seeing a psychiatrist from the older persons mental health team. Frown

He seems to spend more time away in a place of his own(sometimes scary, sometimes bewildering) than in reality, with me. He is due to see a new consultant soon when I hope we will get some help.

I am sure you are not alone. I don't know what your PD person's symptoms are but you have my sympathy. It is extremely difficult living with and caring for someone who is mentally away in another place.

Best wishes

Worrals

sunray

Platespinner, In response, havent got a label of dementia but lots of hallucinations, confusion, not sure where we are, who you are, one minute and then back to normal the next. If those are the probs you are dealing with you are certainly not alone there are a few of us on this site.love Sunray

sunray

Sorry Platespinner its Natasha am talking to, but there you go I am confused too sunray xx

jay

Hi Natasha, My husband has had Parkinsons for 18 years,he is 67. It has not been confirmed that he Dementia, he is waiting to see a psychiatrist. He has been through some terrible times...Hallucinations etc. Now however,... he is seeing people who are not there....accuses me of having affairs.....the list is endless. Sometimes he is fine and seems like his old self, then he talks to me like I am his sister or someone else.(I suppose this is Dementia)It is very hard to cope with. We have been together for 48 years and married for 45 years. We still manage to socialise with friends on a Saturday night (They know him well)but conversation with him is becoming very difficult. I don't know if you are facing any of those problems but you are certainly not alone....keep calm.

worrals

Jay/Natasha
and Hello again Sunray

My husband is 76 and was diagnosed 4 years ago. We have been together for 27 years and married for 25 (we have both been married before). Like Jay I am accused of having affairs, also of trying to steal his money and today, of 'being part of a scam' to stop him driving. I did stop him driving two years ago, with the agreement of our GP, who had known him for 15 years. I think this has come up now because I am buying a new car and he feels resentful that he can't drive it. He is seeing people all the time now and talks to them more than he talks to me. He seems to be better when we are out of the house. When he is his 'normal' self he is very loving and appreciative but when he gets into one of his 'conspiracy' modes he is quite hostile and it is like he is not the same person and he doesn't see me as who I am (his wife) either. It can be quite frightening for me but also I think for him.

It seems though that these symptoms are not unique, which is strangely comforting. I just try to live each day as it comes and take the best out of it.

love to you all

Worrals

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