Also is there anything we can do to help control it other than drugs…
Does anybody no why PSP suffers display th... - PSP Association
Does anybody no why PSP suffers display this bad behaviour grabbing people , kicking, spitting, throwing themselves on the floor.
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82wendy
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23 Replies
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My husband was diagnosed in 2010 and has never displayed any of the behaviour you describe. I suggest you speak to the neurologist. I do hope something is found to improve this behaviour.
Best wishes
Nanna B
hi wendy 82 hi wendy hows it going ok I hope although by your em it looks like your having a rough time of it well mate if we knew that I suppose we might be on our way to finding a cure for psp hang in there mate remember we cant help a lot of what goes on in ourselves and I do not believe anyone of us would do it deliberately I have not done it myself yet but who knows we are all different aren't we\\\ sorry I could not be of any help to you if you are having problems I hope they are soon resolved for you take care peter jones queensland Australia psp sufferer
Hello 82wendy
This behaviour must be very concerning and difficult for you. The symptoms you describe are not usually seen in PSP sufferers (although a few have described this severe form of behaviour). I think a review by a neurologist is warranted because there is a definite overlap of conditions with PSP. The same damaged protein (tau) seen in PSP is also responsible for a condition called FrontoTemporal Dementia (behavioural variant - bvFTD), sometimes called Pick's disease. In this condition the behavioural problems can be far more severe than in PSP. Neurologists do use certain medications to help this condition.
(The overlap of conditions in PSP/CBD is often difficult to clinically interpret but should always be seriously investigated).
Take care and trust you'll find some answers to your situation.
Cheers
T.
My hubby was diagnosed in 2012 and has never displayed te above behavior. But for the past week he has been freezing a lot while walking. And yesterday and today has been feeling very sleepy and in bed. Even when I put him on a chair, he nods off. Eating well, drinking well. Can anyone help me please.
Padma
in reply to Pram
Would be a good idea to contact your neurologist as it could be worth changing or adding meds. Mum went onto madopar at this point and it loosened the freezing greatly even though we did have to increase it fortnightly until she got a consistent mobility. However the sleepiness will continue as it's part of the symptoms, deterioration and the result of everything being a huge effort. Remember to be vigilant against infection and get urine tested once a week as they can be asymptomatic and any changes can be caused by infection. Best wishes x Dianne
Pram in reply to
dianne-- thanks a lot for your reply. i got the urine checked last week and it was all absolutely fine. but will take your suggestion and do it every week. he is sleeping right now but is breathing very heavily. so like you said maybe everything is a huge effort. will contact the neuro tomm morning since today is a sunday. --- padma
cabbagecottage in reply to
Dianne is there a way of checking the urine yourself . I also think it is important .
When the district nurse comes to take his blood for Warfarin she will often get it done for me , but the last time I took it myself to the surgery the nurse pulled a face and asked me if I was told to do it !!
It's the first time I have had any trouble at the surgery they are usually very supportive of us .
Can you tell me if there is very much difference between Madapor and Sinemet please . my husband has only ever been on Sinemet and I have not really found them of much help , although the consultant doesn't agree with me ,
We have had a visits from a Pakinsons nurse who was most caring and helpful . She has spoken to th consultant for us and he has increased the dose of a Neuro patch he also uses , I did ring her and left a message to let her know how we were getting on but she hasn't got back to me . That was three weeks ago !
It could mean she is poorly or even the consultant . I know they like to leave us normally four monthly . I am afraid I can get frustrated or maybe disappointed is a better way to describe it . We want some quality of life NOW don't we .
Cabbage, Take care on using Sinemet. Check the long range effects (erratic muscle movements I believe). Our neurologist said to get off it if it isn't helping, which we did. We are in the USA and found a mobile lab that will come to the house for blood and other tests (urine). Our Medicare pays for the test but not the visit which is $25 each time. A low cost for the service when needed.
Jimbo
Pram, Unfortunately fatigue is an important symptom of PSP. It is a symptom you don't see discussed much because it isn't too difficult to deal with. My wife goes to bed about 9:30pm and sleeps to about 9:30am. Then in the afternoon she takes a nap from 1:30pm to about 4:00pm. We found out early on that fatigue was a major symptom. I found that doing one event/trip outside the home a day was all she could handle. More than that and she couldn't walk well or do anything much the rest of that day and sometimes into the next day. Once you know that you can schedule things so you don't over-fatigue the patient. Hope that helps.
Jimbo
Hi 82Wendy
Prior to my husband being diagnosed in 2010 his attitude and behaviour , mainly towards me , changed and he became very unpleasant and agressive, Sad to say though because he was often like that in the past, it did not register too much with me.
When I spoke with the diagnosing consultant, all he could say was that in his experience, some pre-PSP personality traits quite often continued post-PSP
Over the next three years my husband became more and more aggressive and violent , hitting, punching, biting me and verbally abusing me constantly. In total desperation I contacted the Parkinson's nurse and she suggested Quetiapine, a very low dose. My husband has been on it now for a couple of months and it is beginning to take effect I think.
He has also been seen by a pyschiatricgeriatrician who prescribed Mirtazapine, again low dose ,for depression, early days on this yet. But the awful payback for these drugs is that my husband sleeps a lot and does not appear to have much enjoyment in life.
Dorothy thompson
Dorothy, Yes, unfortunately some meds solve the problem but cause other less tough problems. It's all about choices I guess. Not much enjoyment in having a disease that you know WILL kill you, and take most of your abilities away. Could be good he sleeps a lot. IMHO Jimbo
Hi Dorothy, My husband is in total denial of his condition, and is very angry with me.. He keeps saying he only falls when I am about as if its my fault. I know when he is out and about he is falling all the time, because people are telling me. He wont use a walker just a stick and I know he has frozen in the middle of the road. He takes chances all the time and its nerve racking to watch. I cant do right for wrong. I am worn out as he never stays still.He is on a low dosage of Mirtazapine at night, and Sinemet during the day. God will he ever accept he has this disease and then maybe we could work together.He gets no enjoyment in life and nothing makes him happy. His attitude to me is terrible even though I am here for him all the time.
82wendy, I wish I had an answer for you. Unfortunately I am dealing with the very same thing. I think dorothy t. is right. Personality traits carry over and are intensified. And other than drugs or constraint there is really no way to control it. Try to stay calm-easier said than done I know. Sometimes drugs do not even work. I know it is an awful thing to say but at this point my nerves are so shot from being cursed out and physically hurt, sleeping peacefully sounds preferable. And peterjones, can I trade my psp guy in for you? You have such a good attitude and you sound like you do not have a violent bone in your body
He sounds just like my Man he is so sweet but even I sometimes wish a handsome man would come along on a white charger and whisk me away LOL . Only joking
Bonjour Wendy, what you describe is just terrible but as our friend Tony Strelley points out...these are not really PSP/CBD symptoms...not from my experience anyway. Something is radically wrong and the best person to get a good reading on what the trouble is the Neuro who diagnosed PSP. He'll maybe want to revise his thoughts when you tell him a gang of people in the know are unaware of this behaviour!
Another reason may be the person had aggressive traits that were kept under control...but with PSP that control has disappeared and the person seemingly goes haywire.
Keep calm Wendy , and tell us what transpires with your Mother-in-Law(?)
Best brian.
I AM THE ONE WITH PSP AND I CAN HONESTLY SAY THAT I AM A NICER PERSON THAN I WAS BEFORE I GOT THIS DISEASE . I AM VERY CONSIOUS OF HOW WONDERFUL MY HUSBAND IS THOUGH AND AM CONSTANTLY GRATEFUL TO HIM FOR HIS PATIENCE AND UNFAILING GOOD HUMOUR... I USED TO BE MUCH MORE DEMANDING AND AGRESSIVE !!
Shasha, Now there you go bragging on yourself. LOL I think PSP knocks the wind out of some patients sails, so to speak. Others express the aggressive behavior they always even more.
You have to remember that this is a disease that takes away the parts of the brain that control movement and that each person's brain is unique, as is the progress of the disease; everyone will experience differing symptoms and at different times. But I always thought that mum's little aggressive phase was due to her being aware that she was losing her independence and control over her body and let's be honest we would all feel angry , particularly if we were fiercely independent people as our special folk all seem to be. With mum everything was quick as her disease progressed rapidly so each phase was short, sometimes only a week or two.Her worst outburst was nothing compared to what you are going through and I feel for you. Have you tried aromatherapy, massage, music, calming things like that? After all some of the issues will be the sheer tiredness too and
relaxation can only help. I know my dad played my mum up when she cared for him before her own illness kicked in but oddly he was as good as gold for me! Sometimes a third person involved in their care can give you both a break from this very intensive illness.Your PSP advisor will know what operates in your area, such as Crossroads, to give you such a break. I would definitely recommend it. Best wishes,
Dianne x
I'm sad to say,before my dad got psp,he was a very violent man,towards me and my brother sisters and mum,I wasn't in contact for 15 years,and then my dad became ill.mum contacted me,and I have to say,he is so loving and so grateful for everything I'm doing,I arrive 530 in a morning,to do peg feeds,change him dress him etc.im having the best time with my dad,really wish it was like this in the past,but a healthier person.
Thanks for your help everyone spent a couple of hours with her today at that care home she seems much calmer today carers say she has been asleep most of the time seems I must send her off on one.Some of you spoke about personality traits from pre diagnosis you may be right when my husband and I first got together she acted spoilt wanted what she wanted and acted child like.Urine test tomorrow also ask to see her meds sheet seems she refused meds 5 times in the last few days.Speaking to her today she can not remember hitting and kicking.We had episodes like this when she was still at home six months ago once again thanks everyone for your help.
Wendy, That seems to be an individual thing. Many have PSP but never "act out". My dear wife has not had a single outburst, angry moment, striking out, etc. etc. and is in about her fifth year (as far as we can determine). I think a lot has to do with how the person "accepts" the sentence of PSP. It also depends on what the person was like before PSP. If they were abusive before PSP then that could escalate with PSP perhaps. When it comes to PSP there isn't a "one size fits all" as you will find out. Some symptoms come early in the disease for some patients where the same symptom may be mild or even come very late in the disease. So we can't hang our hat on the experience of another PSP patient entirely. Yes there are similarities but not always. That's why this site is so important, you get a mix of responses to a question and some may vary from others based on their experience. I wish I had better news but in PSP there isn't any.
Jimbo
HI 82Wendy -
As has been said, each person reacts differently. The only time Tony was aggressive was when he was prescribed Madopar at one point. Calmed down again once taken off it (only on it for a week).
Best of luck finding the right path through the difficulties.
Mo
Interesting how people react differently.Gp coming to see her today reviewing medication as she keeps refusing it I think she has an infection but she won't take antibiotics doctor going to discuss covert medication but care home don't want to do this.Keep you all updated.Thanks again
