I have not seen this subject referred to at all and I am wondering if anyone else is having this problem .My husband has had PSP for over 6 years that I know, the last three years have been very stressful as he is obsessed with porn an dating sites , I walk into his bedroom where he has his computer and he is stark naked doing things while watching things that I have never seen in my life, he is not embarrassed at the time but afterwards says he is sorry, my husband is impotent and has been so for more than ten years it was something we were very sad about but did not make a big deal about it as we still had each other, so this development was a great shock to me and is not getting better and now has got into some dating sites mixed up with his porn , I have tried to not take it to heart as I know this is a problem due to his illness.I feel like taking his computer away but I think that would not be good as he likes to read other things on the net and as he is wheelchair bound is very restricted, I have not discussed this with his doctor but am thinking that maybe I should as I get very stressed about it which I know is silly due to his problem , any suggestions would be appreciated.God bless Pamela
Inappropriate sexual behavior : I have not... - PSP Association
Dear Pamela. I am glad that you feel safe enough on this site to ask advice. That was brave of you. I think that now you have taken this step you should talk to yor GP about it. Although this is a PSP site our loved ones can also have other forms of dementia running along besides the PSP and CBD which can result in these sort of inappropriate habits occurring. I know, from the carer's group that I facilitate, it is very difficult for the carer to cope with. The Alzheimers Society have some good advice on this subject so you could contact them too although I don't know if you are in the UK . Good luck and big hug. God bless. AliBee
Pamela, In the case of my wife, who has PSP about 6 or 7 years now, there has been no inappropriate sexual behavior. But there rarely is with women. So I have no first hand knowledge of this. However, in the case of men with PSP, I have read several posts dating back at least 7 or 8 years, detailing inappropriate sexual behavior. I have also met a couple of female primary carers who have had similar experiences to yours with their husband. Most of the behavior was relatively benign: Porn viewing, inappropriate comments to the spouse and other women. Some was a little more harrowing: Inappropriate comments to granddaughters, family friends, etc. Some were horrific, involving sexual aggression and violence. One PSP sufferer needed to be sequestered in a mental health facility to protect his wife and family.
So you are not alone. And you are quite brave to bring this up here. I do think you need to talk to your doctor about this. It may be a symptom that is quite treatable. And if you feel threatened or endangered in any way, please seek help.
I am sorry you have to deal with this situation. Of course it is very distressing! I have heard about similar situations though and don't think is actually uncommon at all. There is a wide range of effects from PSP that involve loss of usual social restraints and self-consciousness, and emotional lability. The worst is the uncontrolled anger, I think. Impotence is an almost universal effect, and that can be a heartbreaker. Everything passes, though, and this will, too.
I do think you may need to find some way to restrict his access to some of the internet, as he could easily be victimized, and he might be giving away more information than is safe for him, you and your finances. I wish I were savvy enough to advise you how to do that, but I know it can be done, as one does with parental control, without taking away everything.
You are wise not to blame him for this, and I admire your ability to see this as a symptom of this insidious disease.
Take care of yourself, and try not to feel hurt. It's not him.
Thank you so much for your reply, I have had to cancel his bank cards and I bought him a post office master card which I put $ 30 dollars at times so that he does not feel without funds I had to do this as as you pointed out he was getting involved with strange things an I found that a lot of money in our account had been withdrawn, our bank was very good found out they were scams and we got some of our money refunded from our bank I explained to them his medical problem and they were very helpful,this dreadful disease has so many side affects , I am wondering what is coming next .Thank you again God bless Pamela
Hi Pamela,I'm sure I saw references to this type of behavior on the regular Parkinson's site here on HealthUnlocked--one of them from the guy himself, who had great trouble with gambling, and it was caused by his medication, which can have great influence on these behaviors. Maybe it's your husband's meds? One always hopes for an "easy" solution!
Wishing you the best.
He is only on Leevodopa& Carbidopa 11/2 three times a day they tried to increase it but made him to sleepy it really has made no difference which is not unusual for psp patients, the specialist is now thinking of slowly taking him off it .thank you for your suggestions regards Pamela
Hmm, that wasn't the meds that caused the problems in the Parkinson's site. .. it was one of the dopamine "agonists" which are linked to more addictive behavior. I mean, all dopamine can affect those? So if the specialist gives him a trial off it, you'll see if it helps? Sorry you are going through this!
This is not uncommon in PSP, unfortunately. Just another one of those lovely little surprises this nasty disease dishes out.
I had a similar experience with my husband. It was much earlier in the disease, probably about a year after diagnosis, when I stumbled across him watching porn on his phone and then also found out he had subscribed to a site which was specifically to arrange 'liaisons' (to use the most polite term I can think of). But when I accessed some of the messages, his involvement seemed actually to be fairly innocent. As he wasn't able to travel around outside the house without me, there was pretty much zero chance he could act on anything anyway.
He had always been a perfect gentleman up to that point so it was extremely distressing for me. When I confronted him, he also didn't seem to be sorry, but looking back now, I think that the emotional blunting that is often a part of PSP contributed to his seeming lack of emotion and remorse about it.
This entire episode probably lasted for about 6 months. It was very upsetting for me. I would catch him, confront him and we would have a fight. However, after a few months this compulsion seemed to disappear, and no other sexually inappropriate behaviour ever happened again.
Whether or not this is something that your doctor could assist with, I don't know. My reading at the time seemed to indicate that as impulse control can be compromised by PSP, this is another manifestation of that. However, each case is different and you shouldn't hesitate to reach out for medical advice or any other kind of support.
Good luck, I hope that this passes.
So sorry you are going through this. My dad went through something very similar. He was diagnosed in about 2016, and within that year or so we noticed similar issues. He probably had the disease for few years already by the time he was diagnosed. But definitely an increase visiting websites and not wanting to take certain medications so he could perform. We finally got him to agree to take the meds and soon the behavior decreased then gone altogether. It's definitely not easy to handle and go through. The medication helped that behavior and his aggression that he had developed due to the disease. Best of luck. And as someone else said, it's not you, it's not him, it's the disease. Feel free to reach out.
Peace to you and your family,
Hi yes I am going to see if his doctor can suggest something, yes it is so true it is not him it is the disease, thank you for your reply Pamela
Hi Pamela, My husband was diagnosed with PSP in late 2016 and died in early 2019. I think the saddest symptom at least from my perspective, was the inappropriate sexual behaviour. Robert had a very strong faith and had been a lay preacher. He was a gentle, lovely man and a thorough gentleman. Before he went into care he began exposing himself, making lunges at women’s breasts and propositioning women even though he too had become impotent. I don’t believe the problem is treatable as that part of the brain has been destroyed. But take comfort in the knowledge that it is this awful disease, not him. Pamela I live in Ballarat, Australia. What part of Australia are you from? Stay strong. I’ll pray for you and your husband.
Hi Lynne when I read your reply I was amazed as my husband also was a lay preacher he used to go into the prisons as well as preaching at times in our church , he still has his faith and this is why I find it so hard at times , but the Lord knows this so I try to leave it in his hands, thank you for your prayers I really appreciate it , we live in Frankston Victoria so we are in the same state , warm regards Pamela
Just a side note- my husband who died of PSP 3 yrs ago was also a lay minister,later an ordained minister,and did ministry in prisons. In fact he was still going into prison once a week with help from his friends,right up until a few months before he died.
For years before diagnosis my husband had an obsession with all things sexual; porn, affairs, inappropriate and uncharacteristic behavior. These behaviors escalated to attempted rape and other horrible behaviors. He also saw nothing wrong with any of it. But then after would apologize but have no remorse or concept of the consequences.Because of this the doctors originally thought he had FTD. He eventually was diagnosed with a behavioral or frontal lobe variant of PSP.
He lives in a locked care home because of his behaviors and they have resurfaced on occasion. The doctors treat them with estrogen and antipsychotics. At his current disease stage, I dont think much of this is going on.
I had one doctor tell me he was likely a mixed bag. He definitely has PSP symptoms, but also some FTD and Lewy Body. I guess we won't know until its over.
I know my situation is extreme, but I hope it helps in some way.
Just when you think you’ve weathered all the storms PSP brings- this one must be emotionally exhausting.
I have no words except to say- meditate as much as possible to keep your own blood pressure down.
Good that you shared - this site is a safe place- never forget that. ❤️
Speak to your GP or Parkinson’s Nurse. Some of the medication can cause this behaviour and it can be changed for something that does not have this upsetting behaviour.
This is a tough one. With the brain issues it’s not as if you can control his desires but id be concerned he’d get into a bad situation with a minor. It would create such heartache for everyone if that happened. There is a Ted talk about what porn does to the mind. It gets worse. It doesn’t become satisfied so the desires become more intense and perverse. I’d block all sites except safe ones. For your own legal safety.
Also look for info from Teepa Snow on her experience and ways to deal with it.
Some medications can cause a loss of inhibition.
Dear Lord77, yes this has been my father. Very unreasonable sexual demands to my poor mum every night and when supported to the bathroom in the daytime. It has now passed as he's declining but lasted a year. Not at all like him, my poor mum cannot discuss with specialist so wrote to him.
Its very difficult this disease isnt it? Sending love xx
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