Does everyone with PSP have personality changes?

[CateT]

It is so difficult to know because of the communication difficulties. I have read about frontotemporal lobe dementia being part of PSP. When I read the symptoms, it sounds like my mum may have this but it could also just be that she has changed because of the the upset and difficulty of dealing with her illness. I just don't know. In an way, it would be easier to accept that she can't help the changes. These are the changes we have noticed: Loss of empathy; loss of inhibitions ie takes her top off regardless of who is in the room; aggression, strikes out at us and screams (despite not being able to talk to us!); no regard for personal hygiene; has a strict routine that she likes and if we get it wrong, she gets mad; constantly fiddles with tissues and wet wipes and drops them on the floor. However her memory is fantastic and every now and then we get flashes of how she used to be. How much of the real her is still there?? Is this an impossible question to answer??

[GlenCourt]

CateT

I am so sorry you are going through this awful journey. My husband began with an FTD diagnosis and then later the PSpP diagnosis. As the disease progressed his FTD symptoms subsided.

The link below will lead you to a New York Times article and video clip about A family dealing with a similar situation. It came out the Sunday before last.

nytimes.com/2012/05/06/heal...

If qthe link doesn't work for you try googling When illness makes a spouse a stranger NYT

Margaret

[dibber]

Cate T

Sorry to hear of your Mum. We too have a Mum with PSP diagnosed last August and about 3 or so years into. Mum has been in care since November, as Dad no longer able to cope with her demands, constant screaming. According to the care home, she too has episodes of undressing infront of rest of residents, screaming, being abusive and very unsettled, Mum also fiddles alot with what ever is near to her, e.g. putting neat pleats into her clothing or generally pulling things apart. Her memory of things in the past is still excellent often remembering things we have long forgotten, but as to what day of the week it is and hour of the day, is another thing. She experiences alot of dreams and very often thinks this has happened to which we have to then convince her it hasn.t.

I hope this has helped knowing that other PSP sufferers are experiencing the same.

Regards Dibber

[john_z]

Hi, CateT.My father has psp and unfortunately among the other problems,we also see changes in my father's personality.When i try to recall how it all started,i remember that these changes where among the first symptoms of the desease.Loss of empathy,loss of inhibitions and no regard for personal hygiene are also part of my dad's personality now.And yes,his memory is fantastic,he remembers everything.But i believe that behind this difficult behaviour, my father is still there.I know this from little things,for example it has happened after an exhausting day to tell us "i was really tiresome for you today".I wish you and your mum the best, John.

[AmandaF]

Hallo, Cate,

My mother was diagnosed with PSP this month, although we had a Parkinson's diagnosis three years previously.

I don't think she has any personality changes - certainly not any of those listed in the posts above. She does show behavioural symptoms, such as repeating a word many times, stroking/pleating/folding tissues, shredding paper.

The more I read, the more grateful I am.

Best wishes,

Amanda.

[Pinda]

My husband was diagnosed a year ago,but had also had a diagnosis of frontal lobe dementia first,because of the cognitive changes ,He is a very different person than he was,behaviour,personality,every way.His dementia was the first subtle changes,he now has difficulty walking,eating,seeing ,balance as well as the ftd.I think each person has different symptoms,he does not fold things, or tear things ,he has become very fussy about his food,very particular and routine orientated,which he never was,very very flexible person.It is all part of this dreadful illness and sadly they don't see how their lack of empathy or feelings destroy you as a carer.It is called emotional blunting,our hospice consultant said.It helps to understand,makes you realise they can't help it.....you can see all the physical symptoms but not the mental ones.It is a dreadful,dreadful disease.

Strength for your journey....we are all in the same place with you.

[teena2]

My husband's personality changes started some years before the actual disease took real hold, and when questioned as to why he did this or that which was so different to his usual behavior he just said he didn't know. I now, being wise in hindsight, realize that it was part of the brain changes even then.

There have been so many times that my husbands behavior has upset me and I have been cross with him , only to learn later when I have been looking things tings up that it is a part of the illness. I now assume that anything not usual for him is the effects of the illness and he really

can't help it.

Teena2

[kpsmail]

I have PSP and so far I do not have the syntoms. expect out of balance and falling I do not any of the symptons

[CateT]

I am just learning what an individual disease PSP is and that what happens for one person does not mean that it will happen for another. Thank you for your comments

Cate

x

[Peter3]

Hi CateT,

I blogged a very similar question to yours earlier in the year and received similar answers. My husband's symptoms/change of personality started over four years ago, but he received the psp diagnosis just over a year ago. In retrospect a great deal of what was happening in our marriage can be attributed to psp.

At times he would have a terrible temper for no obvious reason, he frequently walked around the house naked during the day and didn't feel this was odd. As he said, the problem was mine and I didn't understand him. He still tends to start undressing anywhere in the house, but mainly only in the evenings.

These changes were also accompanied by him not wanting to talk, this was from a man who had an opinion on most things and had been very chatty in the past.

In spite of these problems his memory is brilliant and his mathematical abilities second to none.

Best wishes to you all in this community.

Peter3

[SheilaN]

My husband changed very gradually over 4 or 5 years from a vibrant, opinionated, active, 100% competent, quite loud man to a disinterested, quiet, passive, reliant person. He showed less and less interest in things going on around him, in the family, in our lives. I did sometimes think that the problem was less a lack of interest, more an inability to respond or articulate his thoughts. He still laughs when he's amused and when I get upset in his presence (which I try to avoid) he gets really anxious and concerned for me. Recently he heard me having an argument with some of our carers in the hallway ( and therein lies a tale I won't bore you with!) and his response was 'Let's go home'. I found that really sad. If he had to change I thank God he hasn't become aggressive. Keep sharing your thoughts.

Take care SheilaN

[superman888]

Unfortunately these behavioural changes sound very similar to our own experience of dealing with someone with PSP. In the end my mum was put on anti-depressants twice a day and takes 2mg of valium three times a day. We believe the valium seemed to calm her down a bit. However when you start these medication for the psychological problems then you have to give these medications like clockwork, because if you forget to give them during the day or accidently run out over a weekend, then the person with PSP gets even worse. Good luck everyone.

[Bubbles1]

Hi

My mother in law seems to be deteriorating on a daily basis. New meds prescribed seemed to help for a day or two but are ineffective now. She has progressed from walking around and around the coffee table to leaving the house and using her walker to go down the lane (they live in the countryside on a road with 60 mph speed limit!). You have to sit and hold her hand ALL day and if you get up to go anywhere even for a minute she become hysterical, crying and looking for you. My father in law is finding it very difficult, she shouted and cried at him for over three hours on Friday night that no-one cares if she dies and we do nothing to help her, this is very hard on him.

Bubbles

[CateT]

Bubbles, that sounds so distressing for you all. My mum gets very agitated too and it is so hard to handle. Particularly when we can't understand what she is trying to say. When she was still mobile, she also used to get these types of panic attacks where she just wanted to walk and walk and get out the house. In fact, it was one of the first signs that there was something wrong. She went on anti-depressants to try and help. Maybe it is part of PSP. I have just come from visiting her now and spent ages brushing her hair while listening to some music. That really seemed to calm her down and stop her fussing with thing, trying to get up etc. Just thought I would mention that it helped in case it helps anyone else.

[PSPA_JillL]

Many people with PSP have cognitive changes and as above this the extent of this varies from person to person. It is really important to discuss this with your care team so that the appropriate support can be provided. Many carers say these changes are the most difficult aspect to live with.

[LizzieF]

My mum did all these things relatively early on i.e., not long after I had moved in with her in 2009 (2 years after diagnosis, 4 years after onset of symptoms initially thought to be PD)

She kept asking where her mum and dad was, when I questioned her it turned out that she thought that she was in the house where she was born. She also kept asking me where my dad was and if he'd come home from work yet - he'd been dead 5 years and it really upset me.

She would sit and continuously fold and pleat things. My sister bought her an 'indestructible' ball to pull at and squeeze etc., that lasted all of 2 days! I bought her a couple of adult-sized bibs to protect her clothes whilst eating and drinking and she demolished them by constantly pulling threads out - which I kept finding all over her clothes and the carpet. One day I walked into the lounge and she had torn up several tissues and strewn them on the floor. She started saying really nasty things to me and about me. She said one day "nobody likes you or your dog!" I ran out of the house in tears. I know that sounds pathetic, but I was tired and frustrated so it didn't take much to upset me. She also told people that I was hitting her! My sisters kept telling me not to take it personally but that was easier said than done especially at a time when I was getting up to her 3 or 4 times a night and having no respite whatsoever. She would sneer and lash out and one day screamed like a banshee whilst trying to strangle me when I was trying to give her her tablets! Up until a few weeks ago she was pulling the wallpaper off the wall next to her bed.

Nowadays it's totally different she cannot talk only mutter and mumble, she cannot smile or laugh and she screams at night which is terrible because I don't know if she's in pain or distress, having hallucinations or whatever. She is fed and medicated via a PEG. Recently I have had to start putting her fluids through it too, as any drinks I give her orally come straight back out. So now I have to use a gel to keep her mouth moist.

I talk to her about current affairs, the family and even whats going on in the street outside. I have the radio on and sing to all the songs I know and reminisce with her about some of them. I tell her what I am doing when I give her a feed or medication just to keep her going but I never get any reaction, sometimes I just see a look of terror on her face.

I'm worried that she is aware of how ill she is and that she is near the end of her life. It's distressing to think that she wants to talk to me about things and tell me what she does or doesn't want. If she does, it must be torture for her that she cannot. All I can do is make sure she is clean, dry, warm/cool, comfortable, fed, watered and medicated and treated like a human being.

I don't deny that it is very hard and challenging, but it is worse for mum than it is for me .In a way, for her sake I hope that she isn't aware of what is going on.

Best wishes and love to you all

Liz xxx

[dorothy-thompson]

How sad all the above are, and how sad it is that we have to mainly deal with this completely on our own thereby doubling or even trebling the strain, what is the medical profession for?

dorothy thompson