Parkinsons vivid dreams and now getting physical whilst asleep, need advice please

[Neverstopwondering]

Husband with Parkinsons and cancer has started having vivid dreams. In last three weeks he has grabbed me painfully whilst dreaming a couple of times and last night fell out of bed hitting his head on bedside cupboard. Luckily he didn't injury himself badly even though a bit sore today.

Any experience of this and advice much appreciated

My stepfather had this, they ended up having to get a floor bed with padding on his side. But then he got referred to a sleep clinic and given melatonin which has helped enormously. He didn't have a diagnosis at the time (now diagnosed with lewy body dementia and Parkinson') but as your DH does maybe his GP would be able to prescribe without the sleep clinic?

It’s a common symptom, contact his PD nurse or Specialist and they can prescribe something to help with the dreams and movement. Usually melatonin or clonazepam but obviously seek their advice and they will do an individual assessment.

Thank you for replying

I remembered when they were diagnosing him with Parkinsons he was asked on different occasions if he had sleep issues or dreams. At the time answer was no. Is this likely to be his Parkinsons progressing more/getting worse?

We have a local Parkinsons nurse that I am told is good but because of his cancer diagnosis and treatment happening at same time as Parkinsons one we have not been in contact with her yet. His leukaemia team and the neurologist have been dealing with everything themselves. I will email neurologist tomorrow and think it is time we probably reached out and contacted the Parkinsons nurse too.

Sorry I have no advice… but sad that you & your husband are facing these conditions…Hope things can stay good for you both.

I'm so sorry to hear you're going through this. Similarly to another poster my dad had Lewy body dementia with Parkinson's and he would lash out during his sleep. OT were able to provide bed rails that kept him in bed and reduced chances of him falling out of bed.

definitely reach out to all the professionals that you can to make sure that you have as much support as possible.

We have had contact with a OT who came and assessed the house after his diagnosis. She got us his riser recliner chair and raised toilet seat. I will contact her again to see if she can supply anything or do a new assessment.

A bit worried about a bed rail meaning he can't get himself up to go to toilet in the night. He gets up about three times a night currently. Possibly to solve one problem we will create a new one, what joy! We can't have him falling out of bed again , was very lucky he didn't injury himself last night.

Had phone call from cancer department dealing with him at hospital. The spoke to his neurologist. Tomorrow when he goes in for his weekly cancer care appointment they will talk him through upping his parkinsons medication and possibly spacing out timings differently.

Last night when he had an interesting one. Very realistic dream about hanging off a cliff, which meant he was hanging onto the edge of bed for dear life. Luckily he was still in bed at time as could have been a lot worse.

Hopefully increasing his parkinsons medication will work. He does have his neurologist appointment in October but if things don't improve not sure he can wait until then for more targeted medication.

The cancer team at the hospital have got permission from his neurologist to raise is medication by two more tablets a day. The neurologist has also changed his medication times. Plus we have installed a bedguard to stop him ending up on floor again.

Hopefully all that will work, fingers crossed

I'm so pleased to hear his meds have been increased, hopefully that will make a difference with his dreams. Did they say how long it would take for the increase in dose to kick in?

you must be exhausted with all the upheaval at night xx

A little tired anyway from a rough year looking after him in general but yes nights have been a little bit much on top of that.

They didn't say and maybe I should have asked but I presumed it would be like when they first put him on the tablets. They increased the dose before about every two or three weeks because apparently it can take a couple of weeks for the effect to kick in properly. Think I remember that correctly.