Hi all,
I’m new to the forum. My husband has PD, diagnosed about 3 and a half years ago. He’s not too bad - shuffling, tremor reasonably under control just now unless he’s having an off day, bit dodgy on the stairs, has given up work completely now (as have I). He’s showing a bit of memory and concentration loss and generally needs a bit more help. He’s still a lovely caring husband, and we’ve enjoyed having our adult children back home during lockdown.
However, he has periods where he’s extremely restless in his sleep - shouting or laughing loudly, flailing arms & legs. Occasionally an arm shoots out and hits me in the face, which is not a great way to wake up. I can cope because it’s not every night, but it is difficult to get back to sleep after someone’s whacked you.
For the first time last night he grabbed my arm so hard that he left a bruise. I had to scream at him to make him wake up and let me go - waking up the whole household in the process. He apologised and went back to sleep. I know he didn’t mean it and it isn’t a huge bruise, but I feel a bit freaked out by it. Maybe it’s time to consider separate beds, although he would be so upset. I’ve been trying to avoid this as I don’t want another thing taken away from him.
I know restlessness at night is something that goes with PD, but this is the worst I’ve experienced so far. Has anyone else had experience of this or does anyone know if it’s something that can be moderated (or is caused by) medication? He likes to go to appointments with the consultant on his own and I feel I’m not very well informed and a bit cut out.
Hi there
Does your husband take any medication before sleep, many people do. My wife had very restless disturbed sleep. Her drug has been changed recently. Currently on a slow release Madopar capsule a Levodopa + Benserazide formula, its works a treat so far.
I have not attended all my wife’s Neurology appointments but when I did, I thought she played down her symptoms a good bit OR was not really aware of them in the same way a partner might be. sure the medicos can help with this, best of luck.
@catherine, I use to do exactly what you are describing and my wife like you did on occasion get the odd bruise or unintentional smack as my limbs jumped around. My night time disturbance go it so bad I was actually throwing myself out of the bed. At my worst I was having extremely vivid dreams and recalling past events in my life which was the cause of throwing or diving out of the bed and shouting out various things. Luckily only a few minor bruising, a smashed bed side light and a very frighten spaniel (Loki) who has his bed next to my side of the bed.
Not a quick fix as with anything to do with mr parky, however it is under control now and I have very few episodes. Mostly down to change in medication which includes at night Sinemet CR 50 / 200 and Clonazepam 1.5 mg but also Loki who can sense during the day when I am having a bad day, also knows when my meds are due. If I am having a bad night he somehow senses it and comes to my side and muzzle or licks my arm. Sometimes that wakes me but a lot of the time it doesn’t.
I would get your husband to speak with his consultant and or Parkinson’s nurse. I can only guess that like I was he is upset / horrified that this cruel disease has now caused him to lash out in bed and hurt you as well as the shouting out loud. I hope that you can find a way that his night time and importantly your high time sleep becomes less disturbed.
Thank you both - so useful to get information from people who know. @jps1926 yep, we’ve lost a bedside light that way too! Loki sounds amazing Seems like consensus is have a look at tweaking the medication - thanks for this. Relieved it’s something we can work on.
He says he was having a dream about fighting gladiators Goodness knows what he was watching before bed. Obviously keep him away from anything with Kirk Douglas.
Mine was all about a giant Goldfish mainly. They kept following me around or jumping on me out of trees, ledges, helicopters all sorts of strange places or in places I have actually visited. So weird and bizarre. When I shouted out or talked in my sleep it was usually gibberish but if you dream about giant Goldfish it’s never going to make any sense.
Hello Catherine, I know exactly what you are going through. My partner has done exactly the same thing for years. I would be repeatedly be woken by being punched or kicked - he would think someone was in the house trying to attack him. Can’t blame medication because it started a good 7 years before he was officially diagnosed with Parkinson’s and he wasn’t on any, although looking back he had the disease for about that time. In the end, for my own safety, I moved out of the bedroom. It still scares me when I hear him yelling in his sleep.
Nothing to add to this except an anecdote. I gave a bloodcurdling scream waking my husband. He asked me what I’d been dreaming about and I replied ‘Watering the begonias.’
Hi Catherine It’s all part of parky It’s called REM rapid eye movment. My husband also had this, he jumped out of bed and ran into the wall, had to call 999 as did not know what to do. Also he has had me by the neck trying to stangle me, he has kicked me out of bed, thumped me in the face, shouted lots of swear words, and more. We went to our GP who did not belive us, then passed on to another GP who thought it was funny, and told us to sleep in seperated bed rooms, in all it took about 5 years to obtaln his diagnose. When we went to the hospital and i told the doctor there about it straight away, she said REM now he is on Clonazepam 2 before bed. and it works. REM when you go to sleep even if you dream you can of freez, with REM your body doe’s not freez, and you live out your dreams. Some times my husband wakes up and he remembers every detail of his dream. The thing though is it is me who has “PARKINSON’S” not my husband. touch wood at the moment I do not have any signs of REM. Caterine speak to his PK nurse, look at web site’s also your GP and speak with Parkinson’s UK there is a lot of information out there.
Aha! This is fascinating. Thank you. Googled it and came up with this which sounds spot on [[https://www.mayoclinic.org/diseases-conditions/rem-sleep-behavior-disorder/symptoms-causes/syc-20352920]] We haven’t got a Parkinson’s nurse unfortunately, and husband’s had 3 appointments cancelled due to Covid. Next appointment at beginning of 2021 (!). I’m assuming we could email the consultant though. I don’t mind the disturbance too much, but the rough stuff is not on.
Begonias and giant goldfish … “Graham” (??) got a shout out last night.
Hi Catherine try and speak to the consultant secretary asap. as a friend of mine his wife had REM and she ended up injuring her self. Plus my hubby when he jumped out of bed and ran into the wall his face ended up in a right mess, plus he was unconscious for a while. Don’t for get Parkinson’s UK give them a ring or e-mail as they will have PD nurses you can speak to. yours
Sue D
That sounds horrendous - I’m glad you managed to get something that worked for you and your husband eventually. I’m making light of it but it is a real worry, and it’s not something I had heard of before the PD. In fact, the thrashing around at night started before the diagnosis. Thank you all, for your support and advice. Hopefully this is something we can deal with before it gets too out of hand. Also, yes! the PUK nurses are amazing.
Hi Group, I can’t begin to understand how it feels to sleep with someone who lashes out in their sleep and has such abrupt and possibly painful awakenings, but I do know what it means to have a caring partner, that is still prepared to sleep in the same bed let alone same room! my wife like you is a recipient of such behaviour, she has begun to sense the early warning signs restlessness or turning and wakes me before the event so the terrors have been getting less frequent, I can tell you the immense guilt I feel when its a particularly bad night is only eased by her ability to laugh about it even if it is pretend! Just another safe guard I have a German Shepard called Poppy who will lay beside me at night before I sleep who insists on belly rubbing and she will bark if me wife yells in the night and I love emm both.
Hi, ask your doctor for RIVOTRIL. My husband used to do the same thing and his neurologist gave him this drug, marvelous, no more problems!!! Good luck.
Hi Mary - you were soooo close with the name for the condition. It’s RBD (REM-sleep Behaviour Disorder. I have had it for about 10 years.
I think most people have heard of REM-sleep. Rapid Eye Movement. It’s the deepest part of our sleep and it’s when we dream. If you look at somebody who is in REM-sleep, you’ll notice their eyes moving under their eyelids as they follow the dream. The rest of their body will be paralysed, not moving at all. In patients with RBD they usually have violent or action packed dreams and although their body SHOULD be paralysed, they act out the dream including any kicks punches and sudden movements. The patient is still fully asleep while all this is going on - and if you are in the same bed, you are likely to get punched or kicked not because of who you are - you are just physically in the way of the space in which the patient is acting out the dream. There will often be a dramatic high-point somewhere in the dream and they’ll wake-up. If you don’t talk to them about the content of the dream; for example if you encourage them to go back to sleep, they will probably have absolutely zero recall of the previous night’s adventure. They may even think you are trying to play a prank on them.
However, if you talk to them, immediately after the dream incident they will probably be able to remember a fair bit of the dream. You’ll say something like “you were being chased by tigers” and the patient will say “oh yes, there were three of them and they were gradually catching up with me” - and it will all match what you were told the night before. There’s n guarantee they’ll remember all or any of it but chances are high they will if you talk about it immediately after the incident.
This doesn’t cure the problem but at least it makes your partner more understanding when you say you’re going to sleep in the spare room. You might find whenever they’re stressed or anxious, they have more and wilder dreams. When they’re relaxed - none maybe. You can use this as a barometer for if you’re going to sleep in a different room.
In my relationship, I’m the one who moves room. It seems fair: I am utterly unaffected by it. Well, I guess I’ve hurt my hand on the bedside table with my flailing limbs from time-to-time. But eventually it calms down and we sleep together again.
An anti-convulsant drug called Clonazepam had given me about an 80% fix.
Hiya, I feel for you with this I really do!!
My hubby does the exact same thing… I’ve had broken fingers, multiple bruises and your right it is hard to get any kind of sleep so you then wake up exhausted!
You could check its not RBD which is what my husband was finally diagnosed with after them not having a clue for 2 years and sticking him on Benzos which is a short term fix tbh…it worked for a while but not all the time and…its a Benzo!
RBD ( REM sleep Behaviour Disorder) is quite common among people with PD…basically what happens is when a “normal” person sleeps their body enters a sort of paralysis so if you are dreaming that you are fighting with someone you don’t actually hit in your dream because your body is in paralysis…but someone with RBD acts out the dream and weirdly they are often violent ( I have no idea why) its because they go to sleep but not deep enough so don’t enter REM fully and therefore NO body paralysis and hey presto you get the shouting flailing kicking punching and I literally have singing going on as I’m typing this!!
The solution for my hubby was Circadin aka Melatonin…he started on 2mg and this worked 99% for about a year and we have just gone up to 4mg but you can go up to 8mg… its no where near as harsh as Clonazapam and its non addictive it just helps push them over that gap into REM sleep. The only thing that will now affect it is if he takes his night dose to close to sleep.
A new neurologist figured this out in one session!! Knew straight away what it was. The reason I don’t like Clonazapam is simply this ( apart from the obvious its an addictive drug and my hubby has an addictive relationship with medication since PD)
But the main reason, I cant wake him up on Clonazapam…at all…and trust me when you are lay next to someone who thinks you are the enemy you want to be able to wake them up! Conazapam put my hubby to out of it so I could never fully bring him out so he would hear me but not wake up properly and it made it worse…Circadin works and also weirdly asking him to turn onto his side have been the two things that continue to work 99% of the time.
Hi Catherine, thank you for posting this. I had no idea this acting out when asleep could be due to PD medication. I have occasionally lashed out in my sleep and my poor partner has been rudely awoken! I also talk or shout out in my sleep, rarely making any sense but generally aggravated. Thanks to your post and helpful replies I will try to talk to my Parkinsons nurse and see if my medication could be the cause. It would be great to find a solution as I feel really bad when it happens. Thanks again and many thanks to your helpful replies, Barbara.
Hi, a very useful post, thank you. Can you tell me a little about Rivotril? What dose is recommended? Is it addictive? I am suffering from this problem and would love to find something to stop it happening. My poor partner has been very understanding but I feel so bad when I lash out - I want to find a solution to stop it. Many thanks Barbara
Do talk to your PD nurse or specialist if you have this condition my husband and I put up with it for quite a few years, before we knew what it was. We went though 3 GP surgeries and not one of our GPs seemed to know about it, The GPs have such a lot to do they cannot know every thing. It was only by me going for my routine App with my nurse and in her room was a professor who was doing more studying and it was her who told us what it was.
Seems like consensus is have a look at tweaking the medication - thanks for this. Relieved it’s something we can work on.
Goodness knows what he was watching before bed. Obviously keep him away from anything with Kirk Douglas. 
“Graham” (??) got a shout out last night.