Just observing some changes in my husband. I'll look over at him and he'll be sat, watching tv or looking at his phone and every muscle in his neck is straining as if he's pulling a face or jutting his chin out. This can last for quite some time and then his face relaxes again. Just noticed he's been doing it for a few days now. I haven't mentioned it to him, but its definitely happening more than not throughout the day.
He's also started to laugh manically, shout out and is taking big inhalations of breathe as if choking all whilst sleeping. He was doing this maybe 6 months ago quite frequently, but it calmed right down and his sleeping was more relaxed. Now it's started again.
Do these behaviors sound familiar to anyone?
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my hubbys facial expression have changed too and he has trouble keeping his head upright and straight. In the dentist a couple of weeks ago, I had to stand behind him and hold his head straight.
As for the sleeping stuff, it sounds like Rem sleep disorder and possible sleep apnoea. Husband has got both. For the sleep apnoea he uses a CPAP machine at night and for the rem sleep, he uses now clonazepam as he got quite animated during these 'dreams'.
Sadly another thing for you to discuss with GP or neuro., but yes it is normal and sadly a lot of members here will suffer or watch out for someone who suffers it.
Thanks for that reply ChocolatePot, the info's really helpful. I realise his muscles will deteriorate, but hadn't seen the neck strain thing before and didn't think about the head not being upright.
My husband won't attend the sleep clinic, and I'm hoping he doesn't revert back to the very 'animated' like you describe with your hubby's sleeping as I've taken a couple of good whacks through the night and he's had a fall out of bed whilst moving around resulting in bruised ribs and a bloody nose. He's also started to full body shake just as he's falling asleep for a minute or so which has never happened before.
I'm writing to his neuro consultant to update him on these new symptoms. He only gets one appointment annually and he had a telephone consultation in August due to covid so probably won't have another until next summer.
I hope you are both managing okay and have some good support in place.
husband was refered to sleep clinic by his neuro at the onset of his parkinsons diagnosis. I don't believe we attended the clinic, but after phone call I was able to pick up a little machine, which he had to wear for a few hours at night and then we returned the machine and from that mild sleep apnea was diagnosed. Then we had to attend to choose a mask (we were given 2 or 3) and the machine got explained and if he manages to keep the mask on for most of the night, he feels much more refreshed in the mornings. Well worth the hassle! And yes, I got hit on the head and in the ribs and husbands legs and arms moved so much he also fell out of bed several times. Neuro prescribed clonazepam and things have settled down nicely at this moment in time.
Again that's so helpful so thank you. If I can get around it that way then I'll definitely give it a go and see if this can be of further help to him. He's not trying to be awkward, I do think its fear and staying in denial certainly keeps some fear at bay for him ref future.
So glad this has helped you both and prevented you from having any further bruises!
L has been laughing for some time now, if something goes wrong, something is different or for no reason at all (that we know of) she will start laughing, we've got used to it.
I can be struggling to get her in or out of the car and she will just start laughing out loud, sometimes people look over to see if I'm misstreating her.
She doesn't do it much when she's asleep but others have reported that.
What I do find more frustrating is when I talk to her or ask a question and she just doesn't answer me at all. I'm told that it takes longer for someone with MSA to process the information.
hubby has problems with responding, so I told him if he can't talk, at least I want a thumbs up or down or middle. That way I know he understands and is still with me.
Thanks Derek. I am reading the laughing and shouting out in sleep seems to be something MSA sufferers experience and I'm with you on the stony silence and non-comprehension. L obviously has these traits whilst awake rather than sleeping.
I have to say I thought it was just P's way of ignoring my chatter (which would be fair comment!) but no it seems to be on occasion he's just not on the same page at that moment.
He also doesn't like to speak and will avoid it even though he still can as its hard work for him and tiring. Like ChocolatePot I've asked for a thumbs up or down when he can't be bothered or a super short response so I know he's still with me.
I very much agree with ChocolatePot's post. Jackie had dreadful night terrors - I always said it was her way of giving me a punch for all the things I'd done wrong the previous day. Very often she would scream literally at the top of her voice in the middle of the night only to be woken by me and not knowing she had done anything.
Like CPot's hubby, Jackie is on Clonazepam which has done the trick. We had to play around with the dosage a little to get the balance between an uneventful night and being too tired/fuzzy in the morning. Of all the medication she takes, Clonazepam is the one we really wouldn't want to be without!
Thanks Ian. Definitely taking on board Clonazepam if it gets worse and like Jackie, P will scream, very high pitched, through the night. He can sometimes remember. I think he has frequent nightmares which are pretty awful.
yes my dad used to do strange things like that ?, he would fall asleep in his chair and wave his arms around , and sometimes laugh madly at things which weren’t that funny x and the facial expressions
That makes total sense and I've just replaced the bed in our spare room to make sure I have somewhere comfortable to go.
I'm still working, only 28 hours, but I have to keep my head together (deal with safeguarding children/adults amongst other things). With P not working since the summer he at least can rest through the day if he's not slept too well, but I can't really, so spare rooms my back up. Your mum was very sensible x
Hello, this is my first time on a chat about MSA and I just read youre in childrens safeguarding which I am as well. I wanted to know how you manage caring for someone with MSA while doing such an emotionally demanding job? I struggle with my mother in laws MSA as she has deteriorated quite significantly but it is sadly nice to hear some of her symptoms are common as I thought we were the only ones going through all of this. My mother in law has been laughing and crying uncontrollably for quite some time now, lost all control of her physical body (bowls and movement) as well as speech. There is no support in terms of adult services or NHS but we are slowly introducing private carers as it is too demanding to lift and care for her physical needs now. Weve also got her in a hospital bed with rails up so she doesn't move or fall out. I just feel that whenever I update professionals nothing is done and we just have to accept the continuesd deterioration, but I worry how it can even get worse than this. Having such an emotionally demanding job in safeguarding is challenging but to come home to be a carer is draining and I dont know if there's any other supports out there as I feel I've exhausted all support attempts. Its just so painful to watch her getting worse and worse. I have been having a good read on this group and really feel connected hearing other peoples stories and support for eachother.
I'm so sorry your experiencing this also. Its a hideous condition and so life debilitating.
I considered your first question carefully and I'm managing ok (most of the time!) because of a couple of reasons. Firstly my employer is a charity that supports carers of drug & alcohol users and fully understands only too well the challenges and difficulties faced by carers both practically and emotionally. I get a great deal of support from them and have been able to work flexibly changing days of work to accommodate P's hospital appointments etc. I also reduced my hours to work 28 hours in 3 long days so it gives me time in the week. In that respect I couldn't be any luckier. I've also been very honest with our Board of Trustees and staff team about P's condition so they understand this particular condition. Also with colleagues I work in partnership with, where appropriate of course, as I feel its healthy to 'own' my role, not to gain pity or leeway in tasks needed, just to gain understanding of balancing work and home life. Because it is very difficult. I use work as a good distraction to what's happening at home.
Secondly, P is not as far down the road as some. He furniture walks and is still able to manage his own personal care and has opted since March and all the covid restrictions to stay indoors so I'm not currently transporting him anywhere other than the odd GP appointment as everything else has been telephone consultations. As things progress, I know this is going to be a lot harder but I'll cross those bridges when I get to them.
I feel like you need extra support, as it sounds like you're managing longer hours than me in a very challenging job and your mum-in-law's needs are far greater than P's. Is your mum-in-laws GP not coordinating her care? Through the GP you should have access to an OT who can help with practical issues like the bed or aids in the home. Your legally entitled to a carers assessment through the Local Authority which could signpost you to specific services (in the third/voluntary sector usually) that will support you in your own right as a carer to make your role easier. From practical services and respite opportunities as well as counselling. Are you in touch with your local carers centre as they can support and advocate on your behalf? It's so important that carers have access to support for themselves as you can't possibly manage if your on your knees and with a role as demanding and responsible as safeguarding you have to prioritise you.
Your mum-in-law is also entitled to an assessment from the local authority to determine what support she should have, but you say there isn't any support from adult or medical services? Her consultant also? Not sure which area you live in and I know its different everywhere, but I worry you're managing with no help and that's a lot to manage. Also the MSA Trust to gain good advice about what help your mum-in-law can get.
It is really draining and I tend to go through a cycle of having a 'meltdown' as I call it, picking myself up again and keeping going until I have my next meltdown, but pretty sure that'll be like most people. My main support is my Mum, sis and a couple of very close friends who listen and hold me up when I cry and who make me laugh to lift me up. That's a truly vital support I couldn't manage without as you're right its very painful watching this condition ravage someone you love. I hope you have this with even just one person as it can make all the difference and if not, then you have this forum who are all lovely and will be here to give you a lift and some great advice.
Hi, my dad had very animated sleep at times and he would move around and frequently shout out. He also took a long time to process information and would not answer straight away.
Dads muscles were effected and he used to lean to one side in a chair, although he could still hold his head in the correct place. He did lose control of his eyes and he used to sit with his eyes looking upwards and flickering which meant that he could no longer watch the television or look at a person when they were talking to him.
You have been given some very good advice and I hope it brings your husband some relief.
Thanks Helen. Your absolutely right, I've been given great advice and shared experiences which will definitely help. I'm very grateful for the time everyone's taken to reply, so very appreciated and gives me a baseline for understanding.
Just need to write to the consultant now and explain new things.
You are very welcome. I am just so sympathetic and understanding of how difficult this condition is to manage and the toll it can take on the person with the condition and their carers/families. I hope you are able to get support and have some respite yourself. 💕
I know how important it is for carers to look after themselves in order to look after their family members so definitely make sure I get respite. I'm no use to P otherwise and I have to look after him as he's living this horrific condition.
Like the others, my husband Bart does have night terrors and he will startle me with them as well as having the whacks like others have experienced. He has not had the tightening of the neck muscles but I can see from the notes that it will probably be coming. My husband also has the very deep breaths whilst awake and asleep and he will also laugh whilst awake and asleep. More cognitive things seem to be being reported so I was not surprised. Most people are noticing his personality changes and he is also NO FILTER with his comments. We have made it through a week without a fall now so hallelujah. Bart won't attend the sleep clinic either.
Thanks CanAmK, stubborn alike then with attending support. It's positive to get things confirmed from people like yourself who know so really appreciate it, even if symptoms aren't positive. Not experienced the no filter yet, but there's time yet!
Great to hear that your husbands not had a fall this week and fingers crossed that continues. So worrying to contemplate hospital visits at this point with the current climate so lets hope things stay steady for you.
Hi, I recognise so much of what you are saying and remember the personality change in my dad. He would sometimes come out with really hurtful things and then look really confused if the person he was talking to looked upset or hurt. We all had to develop a thick skin and try not to take comments personally. Luckily, this phase did not last too long!
Like many others, C has experienced the REM sleep disorder for years prior to his MSA-C diagnosis. He still experiences some lashing and shouting out at times. He is also on a CPAP machine which helps with the snoring and deep breathing. I can actually sleep at night.
We have a King Size bed so that helped me to not get hit!
We have not tried the Clonazepam at this time as sleep has become more tame due to his inability to move his limbs to a large degree. I do give him 20mg of Melatonin at night and that seemed to help and calm his sleep.
He also leans to the left and has neck "coat hanger" pain.
The advice provided on this is great. I see that I have some things to look out for and some solutions to some of the issues. Thanks!
Hoping your husband can find a solution to assist his episodes and improve his sleep. 😊
Helpful stuff and good comparisons for me. Glad your husbands resting better with the Melatonin. P's not on any meds and I know he really wants to avoid unless necessary, but the fact I understand what meds he can have and how they help is good.
We to have a king size, but he still seems to get me! It's cool though, no injuries as yet.
I never noticed it until you mentioned it in this post but L also looks as if she's jutting her chin out at times, especially when watching TV although it's not really a problem.
As for restless sleeping, we were offered a hospital bed and it's been a great help.
I just about managed to get another single bed in our bedroom so I can keep an eye on her during the night, also when L has continence issues the rubberised hospital mattress is easy to wipe down and reduces the amount of washing.
So hard to give any meaningful advice as all our journeys and issues seem to be different.
Your right, its not a problem just an observation. I suppose I'm on the look out for changes and similarities with others. Good to keep vigilant, but not good if you know what I mean! I don't make any issue of any of it, just make sure I'm clocking it as P will choose not to disclose anything to the consultant which I'm not really on board with for obvious reasons.
I've got mattress covers, kylies, but it soaks through so that's been no help and no fun at 3am! I'll look to get a rubber mattress if/when things get worse as no accidents for some time now (fingers crossed but probably just jinxed us saying that now!)
Thanks Derek and hope you're well and looking after yourself as well as L
P.S yours and everyone's advice here is great and all of it is meaningful. Your a lovely lot
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