mouthy and loud

[rochestermn]

has anyone with psp gotten mouthing very loud and rude even out in public, We are not sure if this is part of the psp or if this is normal for him because there has been times in normal state that he couldd get loud, and not very nice but now it seems like it is getting worse is this normal or does this come with psp

[anniemay]

Hi, I had a similar problem with my husband in 2005-7 before he was actually diagnosed with psp and was on parkinsons medication. I cannot be certain whether its a phase in the development of the illness, but I do know that since coming off sinemet plus, and later amantadine, many of the aggressive and uncooperative aspects of his personality have virtually disappeared. He has reached a state of acceptance since being off all drugs except painkillers, although he still believes that he has not got psp and that he will continue in his current state for many years. Who am I to disagree - I am just thankful that he is still fairly mobile (with the aid of a frame), enjoys his food, TV, and company although his speech has virtually gone. In my experience sinemet grossly exaggerates many of the worst character traits in psp patients and although our NHS parkinsons nurse insisted he keep taking it "for protection" we feel this advice was wholly wrong. I don't know if this helps at all, but I hope that for you, like us, this is a phase and will pass.

[rochestermn in reply to anniemay]

thanks for your reply, my dad is not on meds so yes I do hope this will pass it does get embarassing when he does this and people dont what is wrong with him they probably just think he is rude

[anniemay in reply to rochestermn]

People tend to think Tom is drunk! This amuses him in a dark way because he used to enjoy more than his fair share and now cannot drink at all!

[SheilaN in reply to anniemay]

This made me chuckle because when the early symptoms began to appear (wobbly legs and very slight staggering) 4 years before diagnosis I and others thought Eddie was drunk. He always vehemently denied it of course because he wasn't. He had always had a massive capacity for alcohol, encouraged by being in the army which has a well known drinking culture, and never showed signs of being drunk, or more annoyingly of having a hangover. He still enjoys the occasional, thickened whisky in his military care home which has a ready supply of the stuff for residents. And sherry for the ladies!!

[SheilaN in reply to anniemay]

Hi,

My husband has been on Sinemet or about 18 months or more and the results are negligible. When he went into care in September I asked the GP to reduce to frequency of the dose but we decided not to abandon it altogether because although he has lost his mobility, use of his hands and his speech we think the Sinemet might have preserved his swallowing mechanism. He take his food as a soft option and his drinks are thickened but at least he can still swallow. But hey, who knows?

Take care

SheilaN

[anniemay in reply to SheilaN]

Hi, thank you for relating your experience of Sinemet, which just goes to prove that this ghastly illness is different for each sufferer. My husband Tom was at a much earlier stage in the illness, and it has had a much slower progression, than your husband, and I feel for you both.

[dorothy-thompson]

Dorothy-thompson

Hi rochestermn - wow, where do I start?

My husband was finally diagnosed with psp in Octobet 2010 but he had had various symptoms/signs, personality changes dating back to 2006. When I ask the neurologist if aggressiveness was one of the characteristics of psp all he could say was that in his experience if a person had an aggressive personality pre-psp they were probably going to have an aggressive personality post-psp.

My husband has this in spades - but only with me - he is verbally abusive most of the time, has been physically abusive some of the time and is generally very dismissive and usually very un-coperative with everything I do to help - like "you're - useless/stupid/ignorant" etc, consequently, and although I tell myself most of the time he cannot help it, I take the bait and life is becoming impossible at times - we are only human not saintly.

But everyone else sees him as the blue-eyed boy and probably cannot understand where I'm coming from - but this is the way it has ALWAYs been. So, I shout and scream a lot, smile and laugh a bit, reach for the wine bottle and carry on.

Thankfully I am getting help now, both privately and from social services and the family.

Nil desperendum.

dorothy-thompson

[rochestermn in reply to dorothy-thompson]

thank you for reply, my dad always new his manners, now you could go to a store and he would argue with the price or if he wanted something he will be loud and say I need this.

[Hidden]

Oddly Mum went through a patch of being inappropriately loud and she would rudely talk over someone when I nudged her she would be affronted and complain loudly not realising everyone was looking at her. A few people asked me quietly if she had dementia starting as it was not her usual self. Of course then her voice started to go exeptionally quiet but a lot of her comments are actually sarcastic albeit funny. Apparently sarcasm is commonplace.

All I can say is make the most of hearing him as it will soon be a distant memory and you will actually miss it.

[dllera]

Sorry to say - these behavior changes are common with PSP. Read up on FTD - PSP can mimic those behaviors.

[toty]

Hi my dear dad who was the most gentle and caring man in the world did have spells of "unkindness" to some people,.when he went into hospital he shouted at the nurses and sometimes was very abrupt with my mum.But we knew it wasnt him really doing this,it was this allful disease. Kind regards Totyx

[Peter3]

Hi Rochestermn,

My husband has always had a firey temper, but about 5 years ago it became worse. He would be very rude and abrupt with anyone who annoyed him in anyway. This was particularly true for my daughter and myself. He told my daughter on a few occasions to ........off and he disowned her. For all of us but my daughter in particular, this was extremely upsetting as you can imagine.

Now his psp has progressed the rudeness has declined considerably and really only shows itself when he is frustrated. He has never had any of the Parkinson drugs.

This is probably of little help, but it does seem to be one of the passing phases in this terrible journey.

Best wishes

Peter3.

[Jeff]

WOW! Aggressive, beligerent, loud, argumentative!! That was Jeff to a T.

Before PSP he had his moments but after he was diagnosed, we realized that disease had taken hold of him years previous and a lot of weird moments and strange behavior was actually the disease and NOT Jeff. He would be loud and obnoxious to the point when he was thrown out of his own baseball park by the Umps who had had enough of the language and yelling! This kind of behavior went on for a couple of years before he was diagnosed and then it disapated in his final years. He actually became quite placid and kind.

It was very difficult to take the brunt of his temper and hurtful comments but you had to remember is was PSP, not him. He never took any medication so we know for sure that it was the disease and not a side affect.

He passed 3 months ago and I miss him everyday. Somedays, I would love to even hear him yell at me rather than not have him at all.

I miss him dearly!

Sheri