Hi, my Dad has Parkinsons and was diagnosed 10 years ago. As has been well for many years but dad started to freeze more and loose concentration @work so retired April 2011. Since then he has gone rapidly downhill and we don't know who to turn to. We live cross Counties & parkinsons nurses wont help @ moment as each County says the other should help us, but they are looking into this urgently since November so fingers crossed
My dad has been having hallucinations for some time now and they are getting worse to the point of despair. he believes what he is seeing is real and we are ganging up on him. usually lots of people in the room occupying his space and trying to get him. Dad wont sleep and keeps my mum up all night and we just don't know what to do. We have been docs and they have reduced repinorol (sorry if that's spelt wrong) from 24mg to 16mg (not really had any effect) and sent dad for a brain scan but have not offered any help support or advice?
any help or similar situations?
So sorry to read your problems with Ropinerole. I think there are others on the site who have had similar problems and will be able to tell you more than I can.
Are they intending to reduce your dad's dose right down and then put him on something else?
I am taking Ropinerole, but not for long and still only a low dose. I have what I would call visual disturbance, mainly difficulty with judging distance, but no problems like your dads.
Please let us know how you get on with the pd nurse. It is frightening when every agency/authority is mainly concerned with moving you onto someone else's budget.
Best of luck
I really feel for you, i'm in exactly the same situation with my Dad. My Dad was retired off early almost 4 years ago now, he is now 63 years old, and like your Dad massively went down hill, suffering severe hallucination's to a degree that he threatened my mum on a daily basis with screwdrivers etc, she had to lock herself in the bedroom at night, he saw green aliens, cat's, dog's, rats etc to a point that he turned all of the sofa's on their backs and cut the bottom of the sofa's open looking for these creatures, completely convinced that they were real, very frightening behaviour for both my dad and us. Unfortunately it resulted in my father being sectioned, however we got him released from this 28 day section as they stopped giving him his PD meds??? unbelievable! Anyway unfortunately my mum and dad separated, later divorced as my Dad became a stranger, and a scary one at that. Unfortunately my dad still experiences these episodes, and suffers badly with anger to a point that he goes out walking the streets early hours of the morning, and has made a few attempts of his life... it is a huge worry, and my sister and I have been screaming out for help, and unfortunately we still haven't had the help we need, nor has my father, it's awful and I know exactly how distressed you must feel, all I can say is, get in to see his consultant and GP, and hound them until they take you seriously, this is what i do on a weekly basis unfortunately, and I feel i will be doing until (a) they help him and us or (b) he kills himself, sometimes i feel it will be latter, because no one seems interested or willing to help.
I do hope you get the help you need, like me and my sister try to stay strong, gently explain to your dad that you are aware that he may be seeing things, but assure him they are not real, cuddle him him often and tell him you love him every day, that is all you can do until his consultant looks at his meds! If it is ropinerole that is giving him hallucinations keep him away from entracapone and madopar too, my dad has tryed all of these and the effects are frightening! He just takes sinemet now, and we are hoping that he will soon be able to have an operation that will feed the meds via his tummy, the op is called Duodopa, however this costs the NHS 34k per year, and they have rejected my dad 6 times so far, but we keep trying!
All my love, and keep in touch! xx
Hello Howley, I'm sorry to hear of your plight but hope that what I have to say may be of some use. You mention that your father is taking Ropinerole and in my opinion, its that almost certain that it is the meds that are causing the problem.
The dosage that you father has been on 24mg is fairly high, certainly high enough to cause him a lot of problems and alter his behavior. Ropinerole is a Dopermine Agonist and they can have quite nasty side effects for some people. There is a DA thread that runs on this forum, just use the search engine to find it. There will be lots of advice and examples of the problems caused by DA's.
It does sound like your father's dosage is being gradually reduced and hopefully he will find some peace.
I hope that I have been of some use
Hi Howley, I am so sorry you are having these problems. I agree with previous post about those dopamine agonists. My husband is prone to hallucinations and what his neuro did was stop the dopamine agonist and just kept him on the levadopa which in his case is madopar. I understand that hallucinations can come from the parkinsons disease and from the drugs, but that the drugs can make things worse. And then of course we need the drugs to keep us walking and moving so we need to balance, enough drug to walk not enough to make us hallucinate to the point that we cannot cope!
You should have access to a parkinsons nurse , I suggest you go back to the gp if you cannot get one and enlist their help to get you one.
Who is you're neurologist? if they arent helping you and explaining things and trying to change things can you ask for a second opinion. My husband sees someone who is a geriatric doctor , I think he is a specialist gp and he is very good , is their anyone like that, like someone who JUST deals with parkinsons disease?
Lastly, how long has this been going on? I found that once my h had kind of got a bit used to the hallucinations he was better able to cope with things , like he was scared at the beginning but then was able to reason his way around it all. Also I did find that if I allow myself to become scared then it doubles the negativity and if I stay calm and especially if I can joke us out of it then this is the best plan although very difficult to do and of course you're Dad might not be able to do it? I have found that reading lots and lots of books about parkinsons disease and people who suffer from it and books by a doctor called Oliver Sacks who experimented with levadopa in 1960s , really helped me to try and understand what it could be like to suffer from these things.Dont know whether any of that might help. sunray
My husband has had hallucinations when he thinks other people are in the house.Eg he will set the table for three instead of two. He finds it unnerving but not frightening. He has also had ropinirole reduced and this has helped but has not eliminated them entirely as we had hoped. He takes selegiline as well as levadopa (stalevo)and I am interested to know whether this drug has been taken by others suffering from hallucinations.
I react very badly and emotionally to this situation which is not helpful to either of us. It would be wonderful to get to the bottom of this problem. My husband coped really well withPD till this started. I wish all other sufferers luck in dealing with this aspect of PD.
My husband suffers from hallucinations and delusions which have become worse since our recent move to a different area, nearer to both our families. He thinks there are people in the house and talks to them and gets upset because some of them are disfigured or are tiny babies with no one to look after them. He also thinks that I am working for some 'organisation'and am being taken advantage of because I am 'always working'. These are only some of the manifestations - I could go on and on ... and sometimes they are not so benign. I try to keep calm and not confrontational - he will ask me what I am going to do about the tall man in his chair or will I be giving the assorted people in our sitting room some tea! I will just say that although I know they are real to him I can't see them. I also try to give him lots of reassurance that I love him and that he is safe. Even so I am only human and sometimes get impatient with him - then I feel guilty.
He was diagnosed with Parkinsons just over four years ago and has been on Sinemet from the start. He had Selegeline within the last year but only for a week or so. The Parkinsons nurse prescribed it to try and combat his excessive sleepiness but it didn't really make any difference so we agreed to drop it. I am interested that, so far, posts have referred to other drugs than Sinemet.
He has been referred to a local consultant and to the Parkinsons nurses by our new GP (one of the first things I did after moving was get an appointment at the surgery) but we have not yet had contact. I am desperate to see the PD nurse as the one in our previous area was superb, so, having made allowance for the Christmas break, will be doing some chasing this week.
Sometimes I feel at my wits end, especially when he told me that he thought we should split up because he thought I was taking his money (we have been happily married for 25 years). Sometimes it feels as if I have lost him completely as the people he can see are more real than I am - but then he comes back and I can see again the man I married.
Glad to get all that off my chest. I can also see that there are other people who are worse off than I am and at least I have my lovely daughter just up the road now.
Best wishes to all battling with this problem.
My husband talks to people in his sleep but at the moment he unbderstands what is happening He has only been pn sinemet plus until a year ago and then they added Rotigotine patch . At first his hallucinations were worse but it seems to have settled down now . During the day he sees people sitting in a chair or a dog pass , he isnt afraid they dont seem to worry him too much . When he is relaxed he will suddenly switch off and when he comes back he acrries on a conversation he had been having while in his off state .
try not to beat yourself up about getting short occasionally . It happens to me now and then as well and Feel dreadful but then I usually say to him I am only human I don't really mean it , I daresay your husband gets short with you also .
Its not easy for any of us and we can only do the best we can . Trouble is we all feel we want to do more .
Hello Hilda, Worrels and Johnnie, Yes my h leaves out water bowls for imaginary pussycats, thinks there are lots of people in the house who we need to look after and them sometimes the people are a bit threatening to him or to me, etc etc. I really dont know whether it is the pd or the drugs, I know he wouldnt be able to move without the drugs. Some drugs do make it worse , like one day the chemist gave him the levadopa but it wasnt madopar and he decided he didnt know who I was. I sometimes think the hallucinations are related to whats on the radio , like he is in a half sleep, the radio is on, then he has a dream related to the radio, then he appears to be awake but is relating to the dream. I see the hallucinations as something he is projecting from his mind, like in a dream but he has transferred it to his waking state. I have definitely decided that the hallucinations dont really matter, what does matter is whether they are benign or not.
I agree the best thing is to stay calm and loving but its not always easy especially if you're tired. I dont think anyone should beat themselves up because they occassionally loose it, its just a natural response to fear and frustration, just say sorry and move on
Sometimes I am able to find him a get out, like he thinks there is a person coming up the path, so the middle way between agreeing and contradicting might be to say o I think its just some trees waving in the breeze and reflecting in the window?
People attacking him in the middle of the night, I might say ' I have told them to leave and now they have gone' very strongly!
saying prayers, sending out positive thoughts, strongly willing the hallucinations to go
any other ideas? am sure you have
Thank you Sunray. It is comforting to know that there are others having the same experiences.
Even to each new second, everything is retrospective, and an active interest in writing and or photography is often most helpful for all concerned.
Thank you Sunray. Your attitude is very positive and pragmatic and very helpful . I am going to try your approach. Best wishes . Hilda
Hi all, My Mum's had PD for 18 years now and suffers from hallucinations a fair bit. Not helped by the fact she has cataracts and my Mum and Dad's house is so poorly lit with old energy saving bulbs! Also she's bent double much of the time and on the floor on her hands and knees so her awareness of her surroundings is significantly reduced.I can't remember what her meds are but like Sunray I've tried reassure my Mum and help her manage them and her feelings around them. She falls asleep a lot e.g. often while eating or drinking and has had a lot of sleep problems over the years.
Like Sunray I wonder if some of these hallucinations are caused by being in a semi-sleep/dream/altered consciousness state - some of the hallucinations she has seem to me to be her brain's way of making sense of things as she's 'coming to' as though awakening from a really vivid dream, or her brain's way of making sense of what she's seeing/hearing/feeling just before she's fallen half asleep. Some of her hallucinations seem in some way 'understandable' to me - I can sometimes 'see' where they might have come from. I'm not sure if I'm explaining this well. My 'insight' (if that is what it is!) has come from my experiences of my own altered consciousness - fainting!!!
I am a blood phobic and have fainted quite a lot of times and when you pass out you often have (in my experience) really vivid dreams and feel that you've been unconscious for ages (you haven't, you've only been out for a second or two) but when you come round it takes a wee while for all your senses to be fully operational and in that time your brain is trying desperately to make sense of the limited information it's receiving from your eyes, ears etc. I passed out lying on a couch in the doctor's surgery a while back and when I came to I saw this white ceiling and thought briefly that I was dead, then I heard panicky voices (the young GP plus assistant brought in to help!) and felt the oxygen mask on my face and THEN I realised, damn it, I've only passed out, how embarrassing, but at least I'm not dead! My brain was trying to make sense of things given limited sensory info. as the blood was returning to my head from my core organs. I think my Mum has different but some similar things going off for her - due to falling asleep or being in a half-conscious state that she sometimes appears to be in. I also wonder if when she has the same hallucination over and over it then gets 'hard wired' into her brain, making it seem even more real to her. Anyway my fainting and coming around again experiences helps me empathise with her - the 'hallucination' seems so real, it makes so much 'sense' to you and it must be awful if you realise/or suspect that others around you just think your 'nuts'. It's embarrassing. My Mum sometimes has awareness that what she has experienced is a hallucination but sometimes she is sure that what she has seen is real and it isn't. I usually respond to her by asking her what she is seeing, I look and try to see what might be triggering this thought/belief (is it a shadow that looks like a person, has she been worrying about her papers etc) and then I try to reassure her e.g. "Mum I don't thinkj there is a man in the trees, I think what you're seeing today is just a shadow and it's because of your cataracts love but you're right there was a man cutting branches in the trees a while ago and I can see why you might think you're seeing him again". I also wonder if some of her paranoid feelings and thoughts come from similar half conscious experiences. She once thought that I'd physically hurt her but what had actually happened was that she'd woken up, wanted to get up to go to the loo but was suffering from painful cramps in her legs and crying with the pain of it. I left her to do some leg exercises (which often helps) and went downstairs to warm one of her hot pads up (to try to ease her pain). When I returned she was very upset and I asked her what was wrong, and she told me that I'd hurt her. I was a bit taken aback and upset that she could think that, then I realised that she'd probably fallen asleep or gone into a semi-sleep state for a very short time when I was downstairs and then had awoken and all she remembered was being in pain and me having been with her and so her brain had associated me with therefore causing that pain! It made some sense! I had to reassure her that that I couldn't have hurt her because I wasn't even in the room and that if I ever did hurt her (e.g. when assisting her to get to the loo) it was purely unintentional as she was my darling Mum and that I wouldn't ever hurt her deliberately. It was an awful experience but one that I learned from - that these 'thoughts' (hallucinations/paranoid thoughts) could be formed in the blink of an eye but with real 'triggers'.
Sorry, what a ramble!!!! Don't know if any of that helps or whether I should be on medication myself!!! Hallucinations do 'suck' for those experiencing them and for those around who care but a bit of empathy and understanding does, I'm sure help. Although sometimes it IS hard keeping on being 'understanding'. We can but try....
Best wishes all, Tricksy