Hi everyone
We have recently moved house and as well as experiencing the lock down all this added together has caused increased confusion for my husband. He is experiencing hallucinations, seeing people living where we have moved to. In addition I was quite shocked when he said he was looking for me. This has happened twice and it is very worrying. His PD nurse has been a great support and has made a medication change so I am hoping things will settle. He was very confused last night and woke me up every hour last night including asking me to ring 999 as he was not feeling well. I am trying to be calm and reassuring but a the same time quietly worried about these changes as he is in his 50s but has had PD for over 15 years. Any tips/ words of encouragement would be appreciated. I am sure everyone is the same missing their usual daily life/networks. thanks Maggie

I am so sorry what you are going thru. From personal experience, with this side of PD, major changes and stress can cause drastic symptoms. It is hard on both of you. The problem, at least in our lives, is that STRESS is forever with us and changes aren’t that rare, either! I personally like a light on all night when I am worse, not a tiny night light, but my hubby who (I believe has un-dxd PD!!!) couldn’t cope at all with a light! So try everything you can think of and then try the opposite to see if that is better. Be sure there are things in view or touchable from his past, that means a lot to him, you would be surprised how that helps changes. We moved 11 months ago into a very small home on our daughters property and I am just now getting to consider it home. I have my memories and my mothers dishes etc. all around me who cares if I can’t find something to cook a meal in! This is more important! :grinning:

1 Like

It must be very hard for you both. I am a similar age and had PD for a similar time. I’ve never had hallucinations but I do get very vivid dreams. Keep talking to him while he has the hallucinations and try to stay calm!!!

I’m very sorry for you.My wife is convinced we have just moved into our house of 8 years, and when are we going home.More difficult to deal with is she constantly sees her father who has been dead for 25
years,and is staying with us

Hi there. I’m so sorry your husband (and you) are struggling with these hallucinations. At one point my husband, too, suffered with almost constant hallucinations. I checked the side effects of the various drugs he was on and discovered that one of them - Pramipraxole - could cause hallucinations. I discussed this with his doctor who agreed we should wean him off it to see if indeed it was the cause. The process takes several weeks but I’m happy to say that now it’s out of his system he rarely has them (touch wood). Obviously everybody is different, and your husband may not be on this particular drug but I mention it in case it’s of any help. As with all these things, it’s a matter of weighing up the benefits versus the disadvantages.

Hi thank you for your reply - that sounds encouraging. We are two weeks in from weaning of Requip. Last year this was at 8mg and now he no longer takes it. Hallucinations have improved over the last seven days but there is still some confusion. The good things is he talks to be about it and I just keep trying to reassure him. The disadvantage seems to be slightly more off periods but as you say it is a matter of weighing these up. Fortunately we have access to an amazing nurse for advice which helps.