I am reaching out as the spouse of a Parkinson's patient. My husband, aged 58, has been battling Parkinson's for 12 years now. Physically, he's managing well, and he's been consistently taking vitamin B1 as part of his regimen. However, over the past year, we've encountered some significant challenges. Despite the therapy remaining unchanged for the past four years, he has recently developed hypersexuality, gambling tendencies, compulsive eating, and excessive shopping habits.
Among these issues, the most concerning is his hypersexuality, which has led him to engage with prostitutes in secret. He downplays these occurrences and is not forthright about them. Coping with this has been extremely challenging for me, and I've sought support from a psychologist to navigate through it. While I understand that these behaviors may be induced by the medication, accepting them remains an ongoing struggle.
Our neurologist has attempted to adjust the treatment plan, but progress has been minimal. Even slight reductions in medication dosage present significant hurdles. At this point, we're uncertain about the potential solutions or whether there are any viable ones. Has anyone else facing similar circumstances managed to find a positive resolution? The dopamine agonist implicated in these issues is Neupro (10mg), and we've encountered difficulties in tapering it down. Any insights or shared experiences would be greatly appreciated.
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When tapering the Neupro, is levodopa medication being added to make up the difference?
50% of Parkinson's patients on dopamine agonists develop impulse control disorder over a period of 5 years, which is why levodopa should always be prescribed in preference unless it is not tolerated.
Difficulty withdrawing from dopamine agonists is known as dopamine agonist withdrawal syndrome, abbreviated "DAWS". Suggestions for managing dopamine agonist withdrawal: wchh.onlinelibrary.wiley.co...
"Other approaches have included the off-licence use of apomorphine and several case reports have been published suggesting a possible role for subthalamic stimulation (although this has also been reported as a cause of ICDs and DAWS); enteral carbidopa/ levodopa infusions; carbamazepine; amantadine (although this drug has also been incriminated in the genesis of the syndrome); zonisamide; or clozapine. We have anecdotal experience (unpublished) of the use of rotigotine patches, although these too have also been rarely cited as yet another cause of ICDs.“
References for these various ideas can be found at the linked paper.
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I have a personal take on this matter which arises from Qigong:
Qigong is the practice of cultivating the Qi, also spelled Chi. Chi is the feeling of Divine Love. Abiding in Divine Love feels like pleasure, it feels like home, and it is fully satisfying. It is also the energy that is behind the joy of sexuality, but it does not have to manifest in that way - it can be heart centered and simply feel like Love. I believe that pursuit of this feeling is behind addictions such as impulse control disorder. If your husband were to be made aware that these feelings could be cultivated via Qigong without the adverse consequences of his current methods, perhaps he would be motivated to give it a try. Further details regarding my experience here: healthunlocked.com/cure-par...
"While I understand that these behaviors may be induced by the medication..." Are, not "...may...". Dopamine agonist cause potentially ruinous compulsive behavior in 1 out of 5 people.
(Neupro is a 40 year old drug.)
The difficulties your husband faces in reducing the drug won't be nearly as devastating as the difficulties you both will have to deal with as his behavior worsens, which it likely will.
From your description, the situation is as serious as it should be allowed to get. Your neurologist doesn't fully appreciate the gravity of the situation, otherwise he would figure out an alternative drug therapy.
Your husband's judgement should be secondary to yours.
I know a woman who drove her family into bankruptcy, ending in divorce, because of dopamine agonist - while her neurologist diddled.
I agree with Marc and PB. You need a new neurologist urgently. I cannot think why it wouldn't be possible to switch to CL. Unless your husband is also on high dose CL. For what little it's worth, and I am not advocating this, I have twice been put on the naughty stool by one of my neurologists for ceasing another DA (pramipexole ER 1.05mg) cold turkey with no serious reaction so it should be possible for your husband to taper.
"While I understand that these behaviors may be induced by the medication, accepting them remains an ongoing struggle."
you do not have to accept them.
Get a prescription for a different agonist for him to wean on to while he tapers off the Neupro, All the PD meds have at one time or another have been identified as causing compulsive behavior to someone but usually not all of them to the same person or even the same problem to everyone.
I have taken Ropinirole (Requip) for many years without experiencing any compulsive side effects, but others do. He has to find what he is able to take and results in a situation good for you.
He may be happy with the existing situation and not desire or be unable to see the need for change and therefore not facilitate it. Either your Neurologist gets involved and helps or you find a new one.
So... I have not been diagnosed with PD. I have REM Sleep Behavior Disorder (fighting in my sleep). RBD is similar to your situation in that we put our sleep partners at serious risk of injury (not in my case anymore, switched to twin beds).
Anyway, in my RBD groups we frequently have spouses of people newly diagnosed with RBD, and even though the RBD sufferer can be quite violent while sleeping, they still insist that their spouse sleep in the same bed with them.
My advice to you is the same advice I give to these spouses that ask the group what they should do: Protect yourself. YOUR safety is your first, second, and third priority.
It would be nice if he could spend a little time in a facility while they changed his medications, got his head straight, and had a thorough physical examination. Please find a path that keeps you safe.
Can I ask if the neurologist warned your husband about Impulse Control Disorder? There have been hundreds of legal cases in the UK against neurologists for failure to warn about and monitor ICD. They are definitely caused by dopamine agonists and the drug companies paid out millions in class actions in the USA and here in the early 2000's.
First - ocd's, as gymbag has pointed out are also associated with other PD meds, including sinemet. They are also associated with PD. Beware "lies, damned lies and statistics"
Like gymbag I have been taking a DA for over 5 years and my compulsive shopping is vicarious because I have Amazon prime. My wife is always asking me to buy stuff for her . Sometimes you need to apply the common sense filters, including personal experience when evaluating research about drugs
It is difficult with ocd's because people are not open about them. But I know at least 8 people with parkinson's on DAs and I am only aware of 1 with a ocd - my Irish mate "Jim"
Jim gambled all 25000 euros his family savings away whilst on a DA and was accordingly taken off DAs.
Jim has a heavily scarred face from a car accident when he was drunk driving. As an alcoholic he now no longer drinks. It's fair to say that he's been a bit of a rascal all his life.
As he said with a big grin "who says it was the drug?"
This is maybe a bit more up-to-date and balanced regarding DA risks
my husband found SSRIs affected his impulse control. Not so much the sexual but he started gambling borrowing on our credit cards, speeding when driving, buying compulsively stuff we didn’t need, and eating too much. He was always in the fridge and pantry.
I haven't provided you with the whole picture. My husband is on a full therapy, probably overly rich. Xadago, 5x100 L/C Neupro patch 8+2mg, Ongentys, and B1 shots 2x a week.
He has been on this therapy for about 8 years with adjustments over time until now, that's actually this; the first 4 years after diagnosis, he didn't take any medication.
We live in Europe, and the medications here are different; I know many of you are Americans. He is perfectly autonomous and still works. He has more than one neurologist following him at the clinic, and the situation, which has been going on for about a year, has deteriorated in the last few months. I found suspicious withdrawals, discovered that his business trips were not what they seemed, etc. Xadago and Neupro have been reduced, but he started to become clumsy and have more off periods.
The neurologist hopes to soon switch him to the new formulation with the carbidopa pump (foslevodopa/carbodopa). Otherwise, the only alternative is DBS, which he absolutely does not want to do.
We are very informed, and he knew this, which makes me soooooo angry. He knew and where to seek help, but he did everything in secret, told incredible lies, and even now, he minimizes and tends to lie. His head is full of that crap (sorry), and if he doesn't detoxify, it's something beyond his will. I don't justify him, but I see this clearly from his behavior, without remorse, without empathy towards me. He has always been a good, kind, lovely man, always present. We've been a happy and helping couple for 30 years, since we were young. Now he has become a person who lies, hedonistic, selfish, living a parallel life, always distracted, hardly present to itself and both of us.
It's ironic that I'm the one seeing a psychologist!!! A psychologist from teh PD team, It's ridiculous that even the psychologist doesn't know what to do and tells me I need to figure out my own tolerance level. If I have to figure out my tolerance level, I should just walk away right now. I have a zero tolerance level for prostitution, wasting money, and gambling, even though I consider myself an open-minded person; I'm rather closed off about these things, surprisingly.
It is shocking to discover that fundamental personality traits can be corrupted by errant biochemistry, but there it is. Sadly, yours is not the only story like this regarding the depredations of dopamine agonist induced impulse control disorder. There's no reason whatsoever to be tolerant of draining financial accounts. Whether you stay or go, do what whatever you can to protect the family financial assets. Consulting an attorney is probably in order.
It's shocking. Shocking. I used to trust him completely, never had to doubt him. He's always been reliable and careful. His obsessions were about sweets and collecting things, even before he got Parkinson's. I was stunned to find out how much he lied. Some lies were just ridiculous. Two days ago, after finding out yet another big lie, I told him I was leaving, no discussion. I won't let him drag me down with him. That's when he got desperate. But not for me, for the caregiver he lost... (now I'm the bad one). The doctor asked me to wait, try adjusting his therapy, maybe even hospitalize him before deciding. But I don't trust anyone, anymore. I'm emotionally wrecked.
The prostitutes add a much more serious level of risk than the spending. Your health is EVERYTHING.
It is sad that this has happened to the good man that you married. It is not his fault. This will sound harsh, but I don't blame abhorrent behavior of any man or animal on the man or animal. They were either made that way or became that way, but what is important is that they ARE that way.
Once you are in a safe place you can do what you can to assist the person your husband has become. Maybe that help includes cohabitation, or maybe it includes being close by, or maybe it just includes assistance from a distance.
Sorry to be so dramatic. I know what it is to gamble and lose.
Do you understand that junkies cannot be trusted no matter what? Your husband is behaving like a straight-out junkie. Stop asking or mentally thinking he will cooperate or follow what is logic or sensible, he is operating on the level of overcharged battery and addict and the machine is going to hold on. What you are encountering is chemically driven like a robot so don't try to reason with it.
A very good description of what is happening now, for much the same reasons, is contained in the short novel, now rather old but right on target even for all that, named Terminal Man, by Michael Crichton. When you have nothing better to do and a few hours you were there won't make any difference, get it and read it. That is what is going on with your husband and the reason is this chemical.
Hello, I was asked early on in my diagnosis if I had any addictive traits by my first consultant, then my PD nurse, and even my 2nd consultant. They all advised I stay away from dopamine agonists, as I can be obsessive, and have quite an addictive personality. They have also asked my wife to come to a few appointments to check in incase I'm lying, asking her questions about my behaviour. Luckily I haven't really exhibited any new or troubling behaviour... I thought this was a standard protocol!?
As hard as it sounds you have your answer. I would not stay. If he can work and travel alone you’re not helping him by enabling him. He has a brain that still works despite his lack of self control and medication regimen. You’re not his Savior and you need to think of yourself
There was a new dopamine agonist in phase 3 clinical trials that purports to not cause icd by targettng L1/L5 receptors. It may not be available in time for your situation, although why isn't he using straight up cd/ld?
Thank you for the information. In his case, mere C/L therapy isn't adequate for good motor function; he is severely stiff without the dopamine agonist.
I hear you and I understand what these drugs can do - my husband was put on Sifrol SR by a neuro ( he did not need it). I tried to get the neuro to take him off it and he wouldn't - he told me he had many patients on it and they were not having problems. So I found another neuro and talked to him - he was wary of getting him off it as it caused a lot of problems - he put him on Entacapone to try to counteract Sifrol. My husband was on Sifrol for 6.5 years and I just couldn't take anymore and almost walked out on a 30 year marriage - so I got very firm on this drug being ceased and talked to our GP who didn't like the drug. So with both doctors and me we decided on a regime to get him off - the strength of drug was reduced to a third and also made an instant - dosage am and pm. My husband was on CBD Oil and it helped a lot - yes it was tough and hard on him but he wanted that drug out of his life because he knew it was the root of all the problems. It was reduced by another third after 3 weeks at the same time his Madopar was increased by 62.5mg 4 times per day and the CBD Oil dose was used at night - after 6 weeks he was off it and then we stopped Entacapone the following week. While he was on the drug he was a mess and his Parkinson's was advancing - today he is back to normal - Parkinson's much improved -no longer walks like a drunk - thinking, speech, gait, logic etc 100% on what he was and compulsions have disappeared - all he has now is Madopar 125mg+62.5mg x 4 per day - CBD at night + magnesium 500mg and potassium 600 per day. Please find a neuro who will listen to you and will talk to your husband and also your GP must be on board as well. I wish you the best as I have been there too and I know how stressful and damaging it all can be.
I experienced all this compulsive behaviour in 2005, gambling being the most destructive. My husband came off the dopa agonist and after my pleading he had DBS surgery.
Well you need to get off the dopamine agonist immediately and start over with non-agonist formulations. Very seriously and very immediately. There are alternatives.
It is a very dark side of Parkinsons but it is also reality and it needs to be discussed more in this forum.
The main caregiver is usually a spouce and since more men than women have PD that means more women caregivers. They did not sign on to be a caregiver, probably were never trained and may not be able and they did not expect that their world would be so deeply changed with 2 lives ruined by PD. I have met many of them in the local PD support group who are similar to my wife and most are an angel of mercy , tired , afraid and searching for information and advice what to do and they are completely devoted to the care of their husband. I always suggest to them to take some time for themselves.
However to be a good caregiver, one needs to have a bit of authority in the relationship to keep things under control. If the patient is still working , has access to all the money and is of a personality that is self centered and that basically disregards the well being of others than when he comes in contact with the medication that has a negative effect he does not recognize it.
If he will not stop taking the medication and find one that does not have the negative effect and stop his compulsive behaviour than I suggest that he has crossed a line .
If you look in the library here at health unlocked you will find many posts on this subject, just enter a search for divorce , or compulsive and you will find many from PD patients that are now alone , they are distraught , lonely and scared because their wife has taken her leave. Often you will notice that they still take the compulsive disorder causing meds even thou they beg their wife to come back .
You and only you have to choose where your line in the sand is drawn and you must consider your own well being. I think your line was drawn many years ago .
I thank you all for your participation and advice, but I realize that it's such a big problem that it's difficult to address it here. However, discussing it has still been useful to get your perspectives. We'll see if the doctors can find a solution with medication and if he'll cooperate; otherwise, the outcome will be what it has to be. My life is also precious, and I can't waste it.
You need to contact the doctors asap, as in today. You need to discuss this with them frankly and in detail, soonest, meaning without him if necessary if doing so gets you to them sooner. YOU need to see them ASAP. If you were in the US they have the ability and even obligation to pull his prescription, including stopping refills. Hopefully you are in as fortunate a position. Also in the US they can bear some liability once fully informed, so you must be frank, not helpless, record your interview even if surreptitiously, and let them know how serious the situation is in terms of consequences already sustained by you, so that you can document fully when and how they have been notified. Do not hold back. Do not be helpless or falsely shy about contacting and communicating with the doctors immediately, this is no time for that, especially if it causes any delay whatsoever... You need to act as forthrightly as if he was, for example, driving completely blind at 70 km per hour.
Thank you Marion doctors have been warned, they are offering solutions and drugs exchange but the point is if this is gonna be working, he will cooperate and how long before stopping the disorder. (If will ever stop…). Believe me I’m not here waiting … I’m not here hoping or praying… I’m doing the best I can despite the situation which make me furios. I’m so angry you can’t even imagine how.
Depending on which European country you are in, you might have more social support options from your local government which you must immediately avail of. Yes, the USA has plenty of legal opportunities to intervene, but they all cost time and money. Europe in general has more generous opportunities to minimize your pain and reduce the risk of further deterioration.
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Coconut oil 
psychotic husband
Are there common or expected progressions of PD?
Increasing Mobility/Reducing Stiffness
Friends and Family Need to do Research
