Secrets, lies & cheating

Why is everything so secretive with Parkinson's patients, why do they suddenly start telling lies and being deceitful in other ways, and, why do they suddenly think they can start cheating on their wives?

My husband has now abandoned great, genuine friends for a group of old school boys - he hadn't seen them in around 50 years!

Two of these have now done some stunning con work on him and one exercise was extremely costly. He was always very kind but this sort of behaviour now with cognitive difficulties evident is going to damage our own financial future. I am not whining here about thousands of dollars, rather tens of thousands taken from retirement

I could write a book, I feel like a detective and don't have time to watch everything going on around him like a hawk.

He has also recently made a very poor attempt at cheating on our relationship. But the lies and stories were so fragile I was able to put this fire out - still I have to think about why he was flirting on-line for six weeks. Another person from the past.

Facebook had to be banned - 3am private messaging cannot be any good! Entire conversations deleted and phones ringing in the middle of the night. If I answer, no- one there!

73 Replies

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  • Sorry to here about your trouble.

    Is your husband on any meds they can and do cause the things he is doing

    I know they did it to me.

    Please respond

    Bailey

  • I am certain it is the DA - taken at night now 3mg a pop. He refuses to come off it because it helps with tremors, muscle cramps and he gets a few hours sleep.

  • What is Da

    Dopamine agonists?

    what meds is he on

    If you think it is the meds call his Doctor and explain it to him

    The doctor will be able to find a a way to help you.

  • If it is the meds get him off them and he will come back to you the side affects will go away

    Good luck

  • yep,it'll be the meds,i'm gunna get mine changed..away from Ropinarol

  • Hello mekewero

    Levodopa /Carbidopa 25/100 work as good or better as Ropinirol

    I have all symptoms except tremor Levodopa /Carbidopa relieves all of them. The only side affect i get is restless leg at night and

    1 6 mg of Ropinirol 24 hour at 8 pm takes care of it. Sleep is a little hard to come by but i get enough to get by maybe 5 or 6 hours a night.

    Good luck

    Bailey

  • thanks..Bailey ,i'll note that down. at moment 2mg Ropinirol 2 @ 3 times daily.plus sinimet for tremor

  • Mirapex/pramipexole made me obsessive. Google it!! It can drive you to excess.

  • My best advise is he needs to do what I did and come completely off DA's. Yes it impacts your physical status significantly but no price can be put on returning to the person you used to be. Before it's too late.

  • Truly, this is one of the most offensive replies I have ever come across! The only thing missing from an unfaithful partner is integrity.

    MrsJoyanna, if these behaviors are out of character for your husband, he is very likely experiencing a side effect of the DA he is taking. He needs his doctor to intervene. You need to contact is doctor asap. Good luck to you!

    Chris

  • Sorry, but my reply was to a reply that was deleted either by the sites's admin or perhaps by the author. See my PM to you.

  • Contacted the specialist and have an appointment in two weeks.

  • Terrific! Hang in there, hopefully this will be sorted out soon. Best of luck to you and let us know how you are doing.

  • I really have to take issue with John's post. Mrs Joyanna's husband's situation has Obsessive Compulsive Disorder (OCD) as a result of taking a dopamine agonist written all over it. Anyone who has not experienced this for themselves finds it hard to believe that a normally decent person can be so affected, but the sad truth is that they can, and are powerless to resist. Suggesting that there are other reasons for this behaviour is in my view irresponsible. I am not offering excuses for his actions either; I am offering reasons. There are many stories about the dreadful things that have happened to people so affected, including wrecked relationships resulting from affairs, gambling and even crime.

    The only solution is a change in medication and the problem will go away with the right change. It is, however, dangerous to just stop taking a DA. Withdrawal should be done under medical supervision, reducing the dose progressively.

  • Some confusion may occur here since the post that Christymw and I were critical of has been removed.

  • Is neupro patch a DA and does it cause personality changes as well?

  • Neupro patch is a dopamine agonist and patients are advised to be aware of the possibility of 'unusual urges'.

    neupro.com/parkinsons-disea...

  • I agree with Moodyblue he needs to get off the DAs

  • Back in 2007, from the results of taking a drug called Recrip I got myself into $100,000 gambling debt and almost lost my marriage and my mind! I immediately got off the drug and the compulsive behavior stopped. Thank God today my marriage and finances are great.

  • Been there done that

    Bailey

  • Bailey, don't you think a few ounces of beer or good red wine would increase dopamine in my brain without losing the house and my husband? I'm not an alcoholic or compulsive anything but I fear taking any drugs because of the effect they may have on who I am, my mind and soul.

  • Good morning racerCP

    I don't understand the beer or red wine question.

    PD changes you and the meds i think if they are working correctly will keep pd from changing who you are.

    PD will make you loose your humor, your out look on life not to mention your ability to do every day things.

    If you think this is the way it should go then forgo the meds.

    Just my thoughts on it.

    Bailey

  • Bailey, alcohol stops my tremors. That is my major symptom. Insomnia other one.

  • Glad to hear that you mostly only have tremor. I do not know how bad that can be because i do not have it. So if alcohol controls it then that's great.

  • Bailey, I have been diagnosed with PD and the very nature of PD is a progression of symptoms. Two years now and no meds but I am progressing, severity of the tremors is increasing but still does not interfere with activities of daily living, exercise and sleep. The so-called non-Parkinsons symptoms of PD are not addressed by PD meds, constipation and insomnia and mental slowing and decline. I have learned to deal successfully with the first and working on the second through lifestyle changes, more involvement; activities and life. It's a balancing act and while I am hesitating about taking meds, I am certain to succumb

    if I cannot function. Meanwhile exercise is my greatest relief and hope.

  • Good luck with your approach to your PD it is so frustrating to see PWP struggle so with PD maybe some day a one size fits all will come along.

    Bailey

  • We are both fighting by moving, exercising and staying vibrant and involved in the communities around us. Now I have joined the PD community and hope to make whatever contribution I can.

  • How long were you on the medication requip before you noticed symptoms? My husband started taking this med about 3 weeks ago. His dose is being titrated up 2 mg at a time each week. He just started taking 6mg. He has a past addictive pattern - he has a 16 yr coin. He still hasn't told anyone but his brother about his PD. I'm very concerned because of his past. We've only been married 11 yrs. He doesn't discuss any of his symptoms w me. He does have tremors and I'm beginning to wonder about his memory. Thank you for your sharing. I read a lot but am often too overwhelmed to post. Ignorance is not the answer.

    Trena

  • Your husbands dr is in control of his meds, not him. You also need a power of attorney to protect your finances.

  • All legal paperwork is in place including POA - thanks Donzim.

  • Hope he doesn't give you trouble over this. Recommend you make a factual, orderly list re his behavior and enlist the aid of your neurologist who should tell him that he will only get worse with regard to his behavior and explain the deterioration of the part of the brain having to do with executive decisions and memory loss. It might also help if he understands that some of these are caused or made worse by the meds he MUST take to control his symptoms (he has no control over that effect so it is not a character issue). Your husband must agree that you be given the legal permission to protect him as well as your finances. Btw, executive decision involves not only major decisions but numerous annoying activities. Every morning I face about 15 things on the kitchen counter, removed from the fridge and pantry, most of which have nothing to do with breakfast. He just can't make an executive decision to pick three things so takes out whatever looks interesting. This am it included Chinese sesame oil, Parmesan, Gouda, Swiss and chorizo, among other things.

    The orderly, dated, unemotional list is important because you might have to take a legal route.

  • I can relate to the bench top scenario, mine includes peanut butter, chorizo, chicken stock, yoghurt and chocolate - remains of that is, whilst deciding what to eat.

  • Talk to the doctor about his medication. Some of the side effects of Parkinson's medication are horrendous, but do not affect everyone in the same way. They can make you impulsive, a seeker of excitement and oversexed. Inhibitions are put to one side. On a radio programme it described how a woman lost her husband, and her home as he was gambling and started taking drugs. Apparently, the excitement was increasing dopamine in his brain.

    When we changed my Hubby's medication his worrying behaviour calmed down. Hope all goes well with you.x

  • It's probaby caused by the medication. My neuro instructed me to watch for any signs of compulsive behaviour (e.g. gambling, shopping, sex etc), and to get an urgent appointment with him if anything like that develops. The drugs can be changed or adjusted. The carer's observation is key to dealing with this.

  • If only all neuro's were as thorough as yours! Sadly, it seems that most PwP put on DAs have no idea of the dangers and the importance of monitoring. I understand that there are still some neuro's who do not accept that OCD is a possible side effect, which I find very worrying.

  • Exactly what happened in my case. Husband had total personality change after DBS. Devastating on our relationship. Neuro never took my concerns seriously and put it down to "relationship". He was proved so wrong but much damage done. Take heart, they can come out of it but it takes huge commitment and love to restore the relationship. Some neuros just do not care or have any desire to learn more themselves about the dark side of PD

  • While I agree it is most likely the medications,I just wanted you to know there is also various compulsive behaviors that can be part of the illness itself. My husband went through this, one is erotic obsession. In this case he fixated on a former employee who was married took a long time , more than a year before he finally came to his senses. That year nearly killed me.

  • I would not be surprised. Disinhibition, risk-taking behavior and dillusional thinking could be in some if not in everyone. 😓 I have some mild OCD but it's part of me, I would not direct my OCD to control me. 😅

  • Arwen, please can you give references to support what you say or how you heard this as I have never heard that Parkinson disease can cause compulsive behaviour before. I do know many people who have had problems with DA's and I know some people also have problems with sinemet.

  • I don't remember where the original ones I read are now, but here are a couple.

    ncbi.nlm.nih.gov/pmc/articl...

    researchgate.net/publicatio...

  • Thank you, Arwen​. Great links!

    Since at least 1913, several reports have evaluated the association between personality traits and Parkinson’s disease (PD), generally suggesting a personality profile characterized by industriousness, inflexibility, punctuality, cautiousness and lack of novelty seeking

    I mean, these are not such poor characteristics at all. I often think shrink labels people as "obsessive" these are normal traits in smarter, successful and hardworking people. Even some of these people are scientists, company directors, professors and so on. I hate shrink.

  • Coniston

    Do you have Parkinsons? It is fine to be here just helpful to know if your observations are from living with PD or just general opinions.

  • Yes, I am a Parkie but it does not define me. It's me and I guess my comments are based on me in pre-PD life and post-PD. My own life's experience tells me I prefer to see the person as the person rather than PD in the person as much as I could. I prefer to be seen as a person, not the Condition as me if it makes sense?

  • Coniston

    No offence meant.

    I hadn't seen you write that you had PD but I had seen comments about having numerous autoimmune conditions,fibromyalgia, Graves' disease, lupus, and rheumatoid arthritis.

  • Well, sadly, I seem to own a tree which grows diseases. I also suffer from epilepsy & EDS. How about you, Hikoi? Are you a Japanese?

  • Oh my goodness! How do you tell which is what and what is which!

  • PD is a problem, I keep dropping my iPad & iPhone.. :-( Having said that probably, these are all related in my impression. Have a great one! :-)

  • OCD is common in PD patients. Certainly as a possible side effect of certain meds. My husband has this problem which is a component of anxiety in certain people. If he takes enough sinemet to move smoothly, he will most certainly spend the day organizing his closet, polishing silver, cleaning already clean pots and pans, sharpening the kitchen knives and generally rummaging through everything he formerly never touched. In his case it makes the anxiety worse to allow that behavior to continue uninterrupted as it negates his sinemet and any interruption of that causes intense nausea. For him. Not for everyone.

    This can escalate into hallucinations as well depending on meds.

  • I can not find where compulsive behaviors are part of Parkinson"s they are caused by the meds. And have never heard of it.

    Bailey

  • Bailey, I just came across this

    researchgate.net/publicatio...'s_disease_Crossroads_between_neurology_psychiatry_and_neuroscience

  • There are many sites that mention this, In the case of my husband he was not on any PD meds and in fact had not yet been diagnosed until well into this obsession. So it was not the meds doing it to him.

    I know that usually we hear about the effects of agonists, but the disease itself can also cause these problems.

  • Thankyou for the links Arwen and Christy and for taking the trouble to respond.

    I have spent some time looking at them but need to do more reading to really understand beyond things I immediately noted.

    These are just my observations.

    The first reference is not a peer reviewed article but Creative Commons ( in effect self published) not in itself negative but I would like to read responses to it after it was published. But more important it is OCD not ICD research

    So are we confusing ICD's and OCD's ( I see I did in my question). they may be related but are not the same for eg the examples that were tested for in Arwens second reference (2001) were not sexual behaviour , shopping or gambling (classic agonist induced behaviours) but checking, cleaning and doubting. Very different behaviours.

    The findings were that early stage mild Parkinson’s disease had no obsessive- compulsive symptoms. These appeared late during the disease progression in patients with idiopathic Parkinson’s disease and Interestingly I don't think mention was made of the possible effect of long term drug treatment.

    The article reference from Christy supports the effect of drugs because it says "As mentioned previously, ICDs seem closely related to the use of dopaminergic drugs." It looks at this in greater detail than I can follow.

    Thanks again, appreciate reading these because it clarifies things for me.

  • It seems something of a chicken and egg debate. For pwp it probably doesn't matter if it is idiopathic or a side effect of DA--just that patients are aware of the added benefits of PD as well as issues related to DA! Lol -- no getting around it, PD is a many faceted gem!

  • I remember a while back being at a party with a group of addiction counsellors none of whom had heard about the effects of agonists on behaviour and clearly didn't believe my attempts to explain. They thought it was yet another excuse that a client may use.

    If the influence of the meds is not recognised then we with PD become responsible and are blamed for the problem in many ways especially not trying hard enough.

    My concern has always been this with ICDs.

    If your neuro believed that ICDs were caused by the disease process the treatment would be different from those neuros that understood the effects of agonists on impulse control.

    I have yet to read about a serious case of ICD cured through talk therapy but I Know a number of people who have lost homes and relationships and their life savings through the drug effects. Their behaviour stopped when the drugs were stopped but too late.

  • Talk therapy doesn't remove the cause of the behavior. I do think however, that if a pwp has knowledge of the potential side effects of DA prior to taking them they may be more likely to watch for signs of behavior changes/urges. And therefore, more likely to understand that the new behavior is irrational and poses significant consequences. I was not told by my Dr. years ago that DA could be problematic. Luckily, I'm vigilant and have kept myself well informed and found the info for myself.

    Thanks for your posts, Hikoi, always so well informed! I appreciate you and your posts!

  • And I have loved reading your post too Christy.

    There is such a lot to write about ICDs but there are earlier threads here that can be searched for and I recognise people on this thread who have been affected by DA's. Being informed is necessary but like all addictive behaviours once hooked in people hide, lie, deny etc to not be found out just as in the original post.

    There have been some successful DA lawsuits against drug companies more recently.

  • My experience too. After all I endured, i was diagnosed with PTSD. taken me 5 years to work through it all. But I could not in conscience abandon a man who clearly was not in control of his own behaviours.

  • I took Ropinerole (DA) for two years and became obsessed about my hobbies! Fishing and Photography... seemingly harmless but it was causing concern as to how much time it took away from my family and earning income. It was also starting to take away my sleep - late night and early starts (to go fishing or take photos!). Have been off over 6 months now and I feel much more normal, even tho my current medication, Sinemet has other side effects they are non-obsessive.

  • In no way am I speaking as an authority but just in just conversing with the PD community it seems as if the compulsive behaviours and mood changes have originated from any meds that have a PEX in the name. Check that out with your specialist.

  • yep ,I have suffered/experienced the risk taking(porn ,cheating sites etc) my neurology apt is soon so I will be raising this issue...p.s. my love for my wife is strong and there is no intention of parting... I liken it to ,shoplifting...its the rush of dopamin .

  • Cheating is very common even in non-PD, "normy" populations. It's hard to say if the "offending drug" (DA) is 100% responsible. If someone had the unconscious "urge" to cheat, originally which was well hidden away and it was DA which unmasked his or her previously well-controlled urge actually to act on his or her temptation? Who knows?

  • You do not understand dopamine.

  • This is the real problem with PD medications . Somehow we forgot what the severity of PD was say 40 years ago prior to the development of this medication and came to believe that we could just have a slightly revised expectation of life. Reality , the cold hard facts, as I now understand them is that the longer one takes the medication the more the medication becomes the problem. I am trying very very slowly, with doctors supervision to reduce the amount of ropinarol / requip. I have over 9 months reduced by 1/4 and have hit a wall of shaking , immobility, lack of balance, and no muscle strength or endurance, in other words a bit more of the PD is showing . It is not really the patients fault, he has a difficult choice, but too bad, the looses must be minimized. The number of lives affected and destroyed must be reduced. lf the patient will not stop behavior which jeopardizes the well being of others or continues to be a burden you must act to ensure your own security . It is the same with Alzheimer , at some point. The truth , we do not want to be a burden, but we are being run down by a slow moving monster that no one else understands , it is our own brain. Why does any one think that our brain would only cause physical problems and leave our personality and thought process unaffected. Like Mekewero above we are fooled into believing that we are in control and surprised when we discover that we no longer have any say in the matter. At some point you must let go, walk ahead , don't look back , save your self. Do not feel guilty , you did your best. Thank you . Be happy

  • He needs an urgent nedication review. I made excuses for my husband's obsessive behaviour, until he was arrested for the third time, and was told he would be prosecuted.

    By the time we got to court the medication change was complete, and his physical symptoms made it unlikely that he would be able to repeat the offence. He was not put on the sexual offenders register, which would have had huge implications, but I had to put my life on hold to become his full time carer.

    Obsessive behaviour is a well documented side effect of some meds. Please, for your own sake, as well as his, get help, NOW!

    Love and prayers x

  • Other than medications, mental pain or anguish can cause one to become obsessed with thinking behaviors that alleviate the pain. Old familiar faces and a new romance might be soothing, especially when combined with reduced logic. Pain and experiencing a slow ending of life-as-you-know-it can make you less concerned with consequences. This last aspect is not necessarily illogical. Earlier life experiences and attitudes also come to the front with mental decline. I suppose a fake romance at 3 am could offer more feel good at 3 am than TV, but marijuana, beer, and a cigarrete would be better for PD and probably more entertaining. Although an increase in oxytocin from romance probably benefits the PD as it does in rats. There's a youtube video of young PD person that says love saved him, especially in regards to his PD.

    "Our findings suggest that oxytocin may have cytoprotective and restorative effects on dopaminergic neurons against rotenone-induced injury. The underlying mechanism may be associated with the inhibition of [cell death]."

    ncbi.nlm.nih.gov/pubmed/229...

  • Other than medications, mental pain or anguish can cause one to become obsessed with thinking behaviors that alleviate the pain. Old familiar faces and a new romance might be soothing, especially when combined with reduced logic.

    Your observation is very intriguing. Cheating in our contemporary life has almost become "fashionable", influenced by the media glamorising "Affairs". One's pursuit for new "love" is made easier by the modern technologies, iPhone, iPad, numerous hook-up sites (like Tinders), Facebook (to find his or her "old flame", movies which reinforces the images of affairs as anything as life-re-affirming (not anything seedy). Society made it easier to cheat for those who want to cheat. Some people start to do these activities more openly when it used to be such a major "dealbreaker" back in the day. Cheating became so common, even if you are found out after once or twice, these are far more tolerated these days and the cycle continues. As for the phenomena in PD, as others had demonstrated the mechanism as to how the drug may manifest causing disinhibition (gambling, spending excessively, sex etc), it is hard to say if the drug affects only certain people who are on this drug or almost anyone who are on this drug? I can see that how a drug such as this may cause issues in some of us.

  • Hello coniston11

    From what i have read and told by my DR. that the meds enhance the tendencies that one has.

    I don't know if it is true i had never gambled before and i just started to do it. My wife told my Dr. and he took me off the meds and away went the gambling.

    Sex addition happen too but i was focused on my wife.

    Bailey

  • Hi, Bailey

    Thank you for sharing. How scary - it's so helpful to have this forum. :-) Without, I would not have known the serious side effects. Hope your week started smoothly. Wishing you well.

  • I think there is much evidence to show that your dr is misinformed. DA side effects have, for many, resulted in lifestyle changes which are totally out of character.

    There was a very tragic case local to me a few years ago, although I didn't know the people involved. A PwP's obsessions drove his wife to leave home and go to stay with her mother. The PwP, known pre PD as a quiet, gentle and caring person, set fire to the house his wife was in which resulted in the death of his mother-in-law. Although he was arrested and charged, the case was never heard in court since he died from an undisclosed cause while in custody awaiting trial. His sister had defended him publicly, and even his estranged wife said that all this was totally out of character.

  • I think there may be emotional changes before diagnosis. Not surprising when the brain is becoming progressively more damaged and dopamine levels are falling. With less dopamine, the pleasure and 'feel good' of ordinary things can be lost. (Hence the search for excitement, just to feel normal).

  • I don't remember who it was. Someone famous, I guess. He was asked when he was about to die, "do you have any regrets, Sir?" He paused slightly and answered, "I wish I had more sex..". Contemporary attitude has certainly changed while in previous generations, these "taboo" topics were well hidden away. I agree with you. It's a little like "midlife crisis" going through the inevitable declines, one starts to reassess his or her priorities in life. When something like PD hits us, we do go through our emotional turmoil faced by the remaining stretch of our "active" life which is left to us on earth. Time for our own Bucket list.

  • I've got a huge concern about these side effects and it's the thing that is really in the way of my considering DA, as I know I may have to take them in years to come. In my younger days, I had a very serious drinking problem. I've not touched alcohol for more than 30 years, but I've had to be very careful in my life, as I know I have a pre-disposition to addiction. My neurologist is rather dismissive of my anxieties and simply says that if there was a problem, they'd adjust my medication. But given the secretive nature of addiction, that might well be too late. It worries me a great deal.

  • If he's on Mirapex or a similar medication that could be why. It causes OCD for Gambling, sex, shopping and something else but can't remember. I was in a clinical study at Penn because the sex thing is what got me and still does. After the trial I tried the pills and they didn't work. If he has the reaction I have he can't help it. You feel like you are aroused every waking moment. When I'm having sex all I can think about is when I'll get it next, with who and where - it's a real problem and no solution I know of. He can't stop if he tried, only solution is going off meds.

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