I suppose like the majority of people, I have been driven to this forum because we need help :O

I am in a serious relationship with a PD sufferer, dx was about 5 years ago and he has been managing fine on L-dopa and on his own. His strategy is (and I will not question or challange this as I recongise everybody has their own way to deal with things) ignore it, don't research and then I wont imagine any further symptoms.

We came into each others lives about 6 months ago, he was honest about his PD at the onset and I didn't have an issue. We just enjoy our time with each other :) still do thankfully. I have some background in personal care anyway and have helped PD sufferers retain their independance whilst in that role so wasn't frightened at the mention of PD.

Recently though, things have been a little tougher as my partner is now starting to suffer dillusions and mild halucinations. My challange is how best to deal with these as they are a direct threat to our relationship and creating both fear (in his case for his sanity) and for me as it threatens how and where I live not to mention the emotional impact that the dillusions can have anyway.

I have finally managed to get him to agree to see his PD consultant again, just waiting for confirmation of an appointment date and, for the first time, he wants me to go with him to the appointment. Massive step for him imo.

Our pre planned response to his dillusions, and the halucinations that normally prompt the start of them, is to stay calm, try to ignore his texts, emails and requests for me to pack and leave but, this can be rather hard to do and I am not altogether sure if there is a more informed way to handle them.

Oh sorry people! this ended up being a rather heavy introduction lol

Saph

Welcome Saphier.
I think that you & your partner have done exactly the right thing in making an appt with the consultant, and it is excellent news that your partner agrees for you to be present. One thing it may be worth considering - is your partner aware that he/she is hallucinating or is delusional? I know that I was quite aware that the people I spoke to were not actually there and that any paranoid feelings were only in my mind. So they were not a problem. But I can understand that , if they are perceived as real it is a different matter
Good luck

Hello Saphier

I too am a carer. It's my hubby with pd. He has been ill for a long time but only diagnosed a year ago. I'm glad you have persuaded your partner to see his consultant because my o/h is on Sinemet CR and recently the dose had to be reduced because it was causing hallucinations. They were pretty horrific.

Since the doseage has been reduced, the hallucinations have ceased to be as graphic and when the next dose is taken out I hope they'll be gone altogether.

You will find lots of people on here to help relate to problems your oh is experiencing and who can empathise with both of you. It would be nice to hear from you again.

Kind regards

JC

Hi
I am also new to the site. My husband has suffered from PD for 11 years and the past three has also suffered from Lewy Body Dementia, he was often having hallucinations so was prescribed Rivastigmine this was in tablet form but unfortunately it upset his stomach and bowels . The tablet was changed to a patch which is stuck onto his skin, this stopped the hallucinations completely.
However he suffers from delusions whereby he is convinced I am having affairs with other men, this has become a huge problem and has been going on for some time. He also has a compulsion to gamble unfortunately I believe these are two side effects of the PD drugs.

Kind regards

Thanks so much for your replies and Brown Eyes, I can relate to what you say as we have had this one too. I read somewhere that a PD side effect can be hyper-sexuality. Once I got over the "what on earth is that" I discovered it means they can be prone to just this sort of belief.

And to answer the question about is he aware he is having the hallucinations? At the time no not at all, he totally believes them to be real and they are auditory as well as visual. They can be something simple like thinking I am sending texts and chatting to somebody and always trigger fairly major paranoid attacks. It is only later, when we have had the chance to talk about it, and prove that what he thinks has happened hasn't, that he realises what is happening. This gets very frightening and upsetting for him and the accusations prior to this point can be frightening and upsetting for me.

I have no wish to cause him pain or fear which is why I want to make sure we are handling things correctly. Making sure I understand what is happening and try to minimise the negative impacts as much as possible.

That's why I am here, imo, where better to get help than from those that have experienced similar?

hiya welcome to the forum ,im ali bin dx 10years ,lots of good people on this forum ,and good surport ,hope to see u around x

Hello and welcome to the forum Saphier. You don't seem to say what meds your partner is taking. Obviously he does need to see his neuro if he is hallucinating, but it would be better if you are present at the appointment with him. It's too easy as the patient not to take everything in that we are told and you need to ensure that he fully understand what is being said to him.

If you could let us know what meds he's on that might help us to offer further advice. Hang in there girl, things can be sorted!!!!

regards
Glenchass

Hi.

When I was on the wrong drugs I suffered a lot from hallucinations.

Sometimes I could see them clearly enough to be able to describe them in detail, but nonetheless I was well aware that they weren't real.

On other occasions I was 100% certain that they WERE real, and I took (sometimes dramatic) actions in line with such beliefs.

Interestingly there was never anything auditory, it was always 100% visual only.

And surprisingly, I was NEVER frightened - for either type.

Ray.
.

In answer to the drugs question....

Requip. Don't know the actual tablet strength without looking but he takes 27 a day.

Madopar. A recent introduction to his regime but problems were happening prior to them anyway. 3 x 3 a day now. Built up to this over the last few weeks

And one other that he takes in the morning that I am blowed if I can remember the name of... sorry

My oh wasn't frightened by the hallucinations either but when he thought he was being attacked, he attacked me in return. This was always in his sleep. That did horrify him. To think he could hurt me.
The doctors explained that we had to sleep apart because oh was acting out the hallucinations.

Recently he was put on clonezepam and that has made a world of difference to him. As he too suffers mild dementia Saphira(memory loss, short concentration span, intermittent confusion and panic attacks) the anxiety has been much reduced and he sleeps for much longer at night.