Can anyone advise me what to do/say to hwp nurses regarding this. He has been on same drug regime for nearly two years. The last drug added was opicapone ,almost two years,ago, to help with wear offs. The last few months hecis struggling to stay awake to take his last 3 tabs, madooar 7pm, opicapone, 8.30pm, then 10pm slow release madopar. Hes very confused when he wakes up between these tabs, he is definately more paranoid during day,and the latest thing is he finds tv programmes very disturbing, he interprets them more sinister and gets quite upset by them. Is this the meds, the condition, ?? Im at a loss with it all
I would email her and say pretty much exactly what you said here in this post. After a certain period of time, the drugs can cause delusions and hallcinations. This intersects with Parkinson’s dementia so it can be hard to unpick but what they should do after you told them this, is adjust his meds again. However, this may then impact his mobility.
Thanks for advice mscoachbeth. I did phone nurse, got emergency appointment for yesterday, but at 1am hwp set kitchen on fire, things have catapulted, we now have multiple agencies coming out to assess us both. Pd nurse has stopped Ropinerole and starting quetiapine, but dementia was mentioned. Cant get assessed till Ropinerole out system, i cant believe how rapid these events have overtaken us. Of course loss of mobility if they remove opicapone too is a worry. Its every day dilemmas for those who live with this. Only saving grace is more people are coming in to give assessment and advice.
Morning Jan … I was out on Quetiapine for a while. I think it helped moderate
my nightmares.
Best wishes
Steve2
Sometimes it takes a crisis to get proper support. What I have found with my husbands journey is that there have been long periods of stability or plauteaus, then sharp and sudden drops leading to a new baseline. The loss of mobility was stressful but on the other hand, I find that in some ways it’s easier. I no longer feel constantly stressed that he is going to fall for instance. There are aids like Sara Steadys that help with transfers. Of course, it would be better to go back to the ‘before times’ when he could walk and do things independently without falling but that’s impossible now. Keep in touch and let us know what happens.
So glad to read that steve2, first dose left him very confused, but recent events have upped all our stress levels. Its my biggest hope the meds help so we can soldier on. Getting more help now, thats reducing stress. How are you this week ?
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Thanks mscoachbeth. Its all part of this journey through PD. With more support i feel a bit better today. Need time to see how med changes affect hwp,we all want the best for our partners in this whole process. Hoping for brighter news to relay next week. Empathy and understanding from all on forum helps me very much. Thanks again
Good evening Jandc … Kind of you to ask. I played Indoor Bowls on Friday & Saturday. It was an Easter competition & I played way more than I usually do & was incredibly tired afterwards although I played well & didn’t fall over once [current record is 6 falls during one game]. That didn’t help me sleep though & I woke around 2am & could not get back to sleep. That was the end of the Winter Indoor bowls season so of course since then I have slept quite well but done nothing. Last night I had a long dream looking for a £10 gift voucher. No I have never lost or ever had a £10 gift voucher. So why was I looking for one in my dream ?
I saw a somnologist consultant last week to try & sort out my sleep problems. He told me my problems are down to Parkinson’s & the medication I take for it, who’d have guessed that ? I have an appointment with a sleep expert Neurologist on Thursday
8th May through Benenden Health.
I also have an appointment to have a cystography procedure on Tuesday 20th May.
I bet no one knows what that involves. I do & I’m not looking forward to it. Any men looking this up on Youtube don’t watch the videos !!!
Im sure many here could exchange interesting dream stories, its the fact you have total recall, and in j’s case, he sometimes has same dream on other nights. I know exactly what your about to go through with your urology appointment( my background was health care). One of the less than pleasant consults for men, j’s been thro same. We will be very interested in outcome of neurology specialist sleep assesment, best of luck with that. Its amazing you keep moral high with your bowling, hats off to you for that, course we all know excercise is good for PD…
Has he been tested for UTI? Always sensible with psychosis/delirium.
Not yet douglas, as i didnt think it was obvious, however im now thinking i will collect sample just to rule it out. Thanks for suggestion. He remains perfectly lucid during day, just night time disturbances