Argh! Is this normal ?!

Argh! Is this normal ?!

Hey all, I generally try to stay positive on here even if I'm losing it in reality but I'm really getting fed up with everything today! Took mum away for a week to Scotland returning yesterday. She really wanted to go and against my better judgement I agreed as figured be last proper holiday. The packing alone was a nightmare and the car journey equally horrendous. Then Scotland offered up rain and storms and strong winds which made the whole thing pretty miserable. But mum hardly slept the whole time, constantly moaning and whining and fussing in bed. Was on antibiotics all week for yet another UTI which I was promised several times would be cleared up by this antibiotic .. She's also noticeably started eating and drinking a lot less all of a sudden and become a lot more hunched over, so pushing her round in her chair in gale force winds as she stared at her knees the whole time felt pretty pointless! (I'm sure I'll look back and laugh at the ridiculousness of it all! Especially the layers she was wrapped in etc!) But the main thing I wondered is do other PSP sufferers constantly moan/groan and wail all the time throughout day and night or is this just mum? She can't surely have another infection as antibiotics just finished and urine dip test negative.. ?! She also is less responsive at times and either yells no or doesn't reply at all. But at other times can talk in full sentences.. I'm thinking maybe she's just tired (as am I !!) and it's just taken it out of both of us but the constant wailing is driving me insane! She also frequently complains about breathing problems which I think is mixture of a dodgy Nostril, PSP, AF heart issue and COPD but the GPs just shrug at me when I ask what I can do to help her. Any advice or word from someone who has the same experiences be much appreciated !!

Thanks all. Happy Monday !!!

Attached is me and mum battling the elements !! we looked a right spectacle if nothing else ! haha

41 Replies

  • So sorry, it does seem to be a common symptom. It is something other folks have mentioned. My guy has started groaning, moaning or humming, much of the time, according to his stress level or how annoyed he is with me, or how hard it is to do something. I can sometimes get him to stop by asking him to sing instead of moaning, which he then does a bit. And we laugh! Sometimes I ask him to breathe deeply a few times to break it up.

    Good for you for making the effort to take your mother on the trip! I imagine if you had decided not to, you might have regretted that, down the road. Funny, my guy went to Scotland (from the US) last year with his children, had a bad fall and got a first-hand look at the Scottish medical establishment. (Very good!) What is it about Scotland? :-)

  • Hey easterncedar,

    Thanks for replying! Mum has groaned during her sleep and during the day on and off for months but now it's non stop! I'd much rather she sang or hummed! I can still make her laugh in between but she always reverts back to banshee mode.

    Yeah I figured better to go and it be dreadful then not try! She really wanted to See the northern lights but I already knew there was very little chance of that but kept hope! Sorry to hear your partner had a bad fall and glad the hospital gave a good service. Our NHS is wonderful to be fair, free and generally efficient. Mum had a bad fall in Paris years ago (before PSP !) and I remember thinking how handsome the French paramedics were, definitely brightened the day haha

  • p.s. I think you both look lovely!

  • Lovely photo Kelly. Well done you taking your Mum for the break.

    My Father does wail not all the time though but he often hums or Coughs a lot. My mother who is his full time carer feels a lot of the noise is linked to making sure you are there. Coughing is a big part of the condition but my Dad does seem to make more noise when you're out of the room. I think he is in lots of pain but think he has a high pain threshold and he is on painkillers

    Sorry not sure if that helps

  • Hey North,

    Thanks for that ! Mum saw pic and said she looks 'a right state' shes normally a glamour nana! Lol

    Sorry to hear your dad is in pain, has he tried acupuncture? Mum used to be in constant chronic pain but acupuncture really helped!

    Mum also coughs a lot and uses nebuliser for cattarh as well as issues with choking. She's finally stopped the constant moaning and wailing (after 4 hours!) but I'm sure it will resume over night. I'm virtually always with mum, I never leave room for long as she always wants to know where I am. But I can understand it must be distressing for them.

    Hope you, your mum and dad are all coping ok and glad you are there for each other :)

  • I have no answers just pray that it gets better for you and your mum


  • Thanks AVB! She's stopped the wailing for now thankfully and seems bit more settled. Hot lemon and honey and chocolate seem to be appeasing her and a mulled wine for me too might help ! x

  • sounds good to me!

  • hi kelly

    ;I'm sorry your mum has the problem with wailing/ moaning all the time =- does she know she's doing it and that it distresses you a lot?

    lol JILL


  • Hi Jill,

    She is aware she does it but has never offered up a reason as to why! She moans a lot during the night too. How are you Jill? I presume you don't feel the need to groan or wail thankfully! Hope you're having less falls now and getting about okay :)





  • Oh Jill, How are you falling so much if you're in a wheelchair? Please try to be careful. My mum can walk a little but we use mixture of chair and walk and she has very few falls. They still happen but she is virtually shadowed everywhere she goes! I know that's not nice and impedes your freedom but keeps you safer. Mum has osteoporosis too so takes tablets but the PSP neuro reckons to get a dexa scan (? - bone density?) and then stop them.

    Glad to see you're still able to type and be a main member of the PSP community. You're doing fantastic Jill X

  • Oh bless you that was so brave to go away with your mum like that (even though you wish you hadnt lol) My partner into 9 years with PSP does not moan but fidgets alot to get comfortable its all enough to drive anyone insane you are not alone x

  • Hey Escada,

    Thank you ! I knew it had to be done but was an ordeal tbh!

    9 years! Wow I can't imagine going through this condition for so long. Hope you are both staying Happy and well as mulch as is possible.

    Mum is a fidget bum too! She has a door bell by her bed and I've been in and out like a blue assed fly all night ! Ha! But tomorrow agency are doing nights ! WOOP ! Can't wait lol

  • I put my partner to bed about 10pm with his Zopiclone (sleep pill) and his white pot (for a wee) and thats it lol if I was up all night I could not cope with that x

  • Nice photo shame about the weather, but glad you managed to get away and have a nice time.

    Brian shouts out in his sleep sometimes so loud it wakes him up.

    He does a low humming sound when he is upset and a growl type noise when he is stressed. Janexx

  • Hi Jane,

    It definitely sounds like the noises in some form is a PSP issue. I hope you and brian are doing okay. Maybe it's a stress thing but if I ask she says nothing and I have no idea what wise to suggest ! Battle on !

    Fingers crossed for a good sleep for us all xx

  • Yes, mine just the same as yours, Jane. I really do wonder why?

  • love the photo, how brave to battle those winds, a memory to keep for sure, xxx

  • Thank you ! Not sure about brave, maybe foolish :) but definitely a memorable trip ! Edinburgh in a monsoon is an experience of a lifetime xx

  • Brave to go to Scotland in December !! Where did you journey from ?

    You'd have regretted if you hadn't gone, I think.

    C sometimes moans or groans but not much. I think it is increasing !

    Sometimes he is very restless or keeps raising himself in his chair. I think he needs to get my attention.

    Love the photo !

    love, Jean x

  • Hi Jean,

    Mum really was hoping to see northern lights, so figured winter best chance, but no joy sadly. We travelled from Northamptonshire so a long enough trip ! The photo is funny but thanks! Mum mortified I've shared it but laughs at he ridiculousness !

    I think all PSP sufferers are restless understandably so, mum used to be very restless, up and down in her chair and you'd have to run to her to follow wherever she went to keep her safe. Used to drive me barmy but now I kind of miss her random bored wanderings about the place. She's lost that fighting spirit now (unless I leave chocolate I view wherein all bets are off).

    Anyway hope Yu are both as well as can be xx

  • Chris also wanders, searching for biscuits !

    I have to be very alert to prevent falls. On the escalator I held the back of his coat all the time. I looked as if I was arresting him !

    J x



  • Love the picture of you and your mum at the statue of Greyfriars Bobby. Brings back happy memories for me as Edinburgh was our favourite place to visit before PSP. Made me think that maybe we carers are like Bobby, dedicated to our loved ones, watching over them all the time. (Bobby is the dog in the picture and sat by his masters grave till he died himself, he was so devoted. A lovely story and a film was made out of this devotion.

  • Great picture, M wails and moans most of the time no noise means she is asleep or fighting a choke so must be a symptom of PSP, that is not included in the usual list. I am quite sure a lot of the time it is a panic reaction she cannot see me. Marie Curie Nurses doing night duty have to sit with her now as her moan rises as anxiety increases. They say she calms down but wants me she eventually drops off but starts up as soon as they try to creep out of the room. GP has prescribed lorazepam which we use once or twice a week great for short periods but can cause accidents as she cannot wake in time for the toilet.

    Best wishes Tim

  • Hello Kelly - have just read your post about the moaning etc and is it a part of psp. My husband makes noises as he breathes (no heart or lung problems), hums when eating and is constantly clearing his throat (something he has done for years and which used to annoy me enormously before he was diagnosed). Having read the replies to your query it looks to be a common factor with this horrible condition. I find it irritating but T will not admit that he does it and gets annoyed if I mention it. Can stand it most of the time but during the night I am unable to block out the noise and lack of sleep therefore makes matters worse. Keep telling myself that it is something we have to live with and my problem with his moaning etc is nothing compared to what he is suffering.

    Lovely picture of your mum and yourself - such a pity the weather was unkind to you

    Best wishes Liz

  • Boy I know my Aunt Bev did she drove me to want to get a rope and hang my self and I not kidding I asked her was she hurt , does she need something WHY ARE YOU MOANING she said it just made her feel better but there was nothing wrong, well it might of made her feel better but it put me on snap mode so I would just go out side and do something , not many things bother me but the moaning I just could not stand it. She got to the point though when she didnt get her way she would wait to hear me coming and get louder because she knew it got on my nerves then I would go where she couldnt see me and shut the door like I went out side and she would stop. She just got a kick out of driving me nuts. She doesn't do it that much anymore but for the longest time she did.

    good luck lots of hugs


  • My wife moans occasionally, but frequently shouts out for her mother (mum 😊) or our daughter. Does this also during the day while sitting back in her recliner lift chair. Usually throws her arms out and kicks her legs up. This means she's asleep. She has REM Sleep Behavior Disorder, which is common for people with Parkinsonisms, such as PSP. Sleeping pills help, but then she has too much daytime sleepiness, which I don't think is good.

    I've taken my wife on lots of trips and cruises since her diagnosis, and while some were extremely difficult, I don't regret a single trip.

    Cherish each moment with your loved one and always try to remember that most of these behaviorial issues are uncontrollable and just part of this dreadful disease.

    God bless!


  • You are a child most people can only dream of BUT you are breakable,PSP will do just that unless you get some ME TIME !! love your MOM but also LOVE YOURSELF Rollie

  • Hi, Rollie! Good to see you. How are things in NS? Too warm here in Maine! Love, Ec

  • Hi my dear how are you getting along...I never hear you complaining you must be strong !! Here I,m getting along but live in a hole that can never be filled,our weather is like yours more like spring ,take care of YOURSELF love Rollie

  • Oh, I complain all right, I'm afraid, as my guy, who NEVER does, could testify. When I was a youngster I studied the classics and wanted to emulate the stoics. Ha. Here I am with a perfect opportunity to be one, and I am such a whiner. Oh well, I will try harder. Thanks, Rollie for your kind words. I am sorry to know you are in that hole, and wish I had some comfort to offer you. Long distance hugs and best wishes, Ec

  • There is not one single caregiver to a psp patient who does not ride a r-coaster 24/ heart goes out to you,love rollie

  • I really feel for the people whose loved ones are aggressive or abusive or otherwise really difficult. I don't know how I would cope with that, but suspect I just wouldn't! Not at home. My guy is stubborn, but really sweet and patient and brave. Easy to love. So, on we go!

  • doing your best is a big demand on you,Madeline was exactly like your guy,so easy to love but it makes your job twice as hard as you anticipate such a great loss unless a cure comes Rollie

  • Yes. Meanwhile, I must remember to hug him HARD!

  • you,ve got it !!!!love Rollie

  • Lovely photo!. My guy moans and growls all night long. He also makes this long drawn out growl after taking a drink. He has been doing that for years and it used to annoy me like crazy. Now, and especially after reading some of these responses, I think this was a very early signal of the PSP. Now I am trying to recall when he first started doing that. Not that it really matters, but just for my own information.

  • Hi there - it is pretty normal for the groaning etc and it is possible to have another infection so just watch it and be sure she doesn't go septic. Over time antibiotics may not work or work effectively. Have you thought about a tilting wheelchair or even botox shots for her neck?

  • Be careful with neck shots the throat is a poor place to cause further problems,I had the experience with Madeline,Rollie

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