Impulsive and compulsive behaviours in Parkinson’s

Hey everyone! :slightly_smiling_face:

Impulsive and compulsive behaviours can be a side effect of Parkinson’s medication. Knowing how to spot these behaviours and what to do when they happen is the best way to manage them.

That’s why we’re writing a Q&A with a healthcare professional about impulsive and compulsive behaviours. Got questions on the topic? Tell us below so we can include them.:point_down:

Is there any advice for people living alone with obsessive/ compulsive behaviours?
It’s easy to ignore, rationalise and hide your behaviours when you live alone.

If you manage to recognise what you’re doing, regardless of whether or not you live alone, how do you access actual ongoing support both in terms of the emotional and financial (or other) fallout of associated behaviours? Is support available?

Hi @Jackson,

Thanks for sending us your question, I have passed it onto my colleague who us managing the Q&A.

Best wishes,

Hi Jackson,
Basically the answer is no.
You can ring the helpline, speak to a Parkinson’s nurse, a neurologist…you can ask to come off the DAs and cope with the withdrawal, you can ask for counselling.
But basically it is over 10 years since research showed that 50% of men over 50 on a therapeutic dose of DAs will experience life-changing OCDs, now renamed ICDs…
Legal action in many countries made financial compensation available to those who had suffered and lost everything…In the U.K. no legal action was possible, PDUK did not support it.
Patients still stumble into this forum with ruined lives, neurologists still deny/ minimise the risks to patients, the drug companies continue to make millions…
So many of us faced lives ruined, relationships crushed, finances decimated, mental health problems never addressed.
Most of us gave up and stumbled off into the darkness.
Ask for help. Demand it. Do not take no for an answer.Research the DA/OCD destruction of sanity.
Do not join us…


Hi, thank you for your reply; I feared that might be the case. It’s too hard, I spend my life with Parkinson’s fighting everybody for everything and it’s too tiring. I feel like little more than an inconvenient financial drain which needs managing as cheaply as possible. It sounds like things have been really rough for you and I’m guessing that you’ve never had any real support with this. You are right of course, there is no proper support and if anybody signposts me to another generic self help sheet I will scream. They don’t help. I can ignore a self help sheet, they don’t answer my specific questions or address my particular needs and they can’t answer me. They are, however, probably cost effective. :~S
Take care

1 Like

Hi Jackson,

We’re sorry that this is so draining for you. Please do feel free to call our Helpline advisers on 0808 800 0303. They will be glad to offer advice, support or just chat if you want to. You can also email [email protected] if you prefer. We hope that this helps in some way.

Best wishes,
Moderation Team

Hi golden girl … hope you are well … and still batting on … you are still in my thought often … ive been separated nearly 5 years from mark robson …I cant afford to devoice him… and he wont devoice me . he is not good … still gambling on and off … hes still stealing monies, from his 84 year old father … who as cancer …January was the last time .
at this moment I’m trying to find out where he is … his nieice and nephew and landlord dont know where he is . They contacted the police … they said hes in hospital … they rang the hospital and they said they discharge him on he 14th of Feb… and because hes not got down a next of kin no one will tell them where he is … I’ve been his next of kin on and off this last 23years …and up and till this christmas, I was getting calls because he wasn’t at home for him to take his tablets… I’ve had lots off calls from them … over the last 5 years . Hes lives in Fleetwood and I’ve in oldham …(work that one out )I am waiting for a social worker to ring me … I’ve look up about next of kin … and uk law is open to interpretation… but if he died … God forbid… they would be on to me … for his funeral and I would get widows pension …uk law for you again … the care hes had this last five years is shocking …
Hope you see this golden girl… I’ll never forget you … and what you are going through… sam robson … xx

I have replied to you but can’t find it anywhere!
No idea how to use this forum!
Let me know if it reaches you and if not I’ll try again.

Hi goldengirl …
I cant see your reply … I’ve spoken to his social worker now … Mark’s in a care home … being accessed … I just hope he gets sorted now … hope you are ok xxx

How on earth do we message privately?
I am so sorry you got embroiled in this DA OCD nightmare…
We never really recovered.
We coped with the illness but the treatment destroyed our marriage.
Two Apanda half years ago my husband fell due to his low blood pressure and smashed his leg. He lost all his mobility and ended up in a wheelchair…then he developed dementia.
He has been in a nursing home for two years now and I visit akmost every day.
The person there looks and sounds like my husband but he is long gone really.
I find it hard to recall the good years and happy marriage before the DAs.
What are we now Sam?
Not married but not widowed or divorced…stuck in no man’s land…
I think of you too and and our sad conversations as we tried to find away through…
Sad end to happy marriages…
I hope you find some solution to your difficulties and some peace.
Sending love and hugs,
Val/ GG.

1 Like

I dont knw how to message you privately…I’ve not been on here for 4 years or so. I just clicked on the box , because I saw you still come on line…( I’ve been in no man’s land … ) very true word’s how you describe us.
Can I put my email address on this link . So I can contact you … ?? xx

1 Like

Hi @pop1,

Just thought I’d quickly chime in; if you’d like to send a private message, you simply need to click on the person’s profile picture and then you’ll see an envelope image appear. Click on the envelop image and that automatically creates a private message. Please see the image below for further assistance:

Best wishes,

Hi @goldengirl and everybody else - thanks for sharing your experiences on this forum. My mother has been dx 26 years ago and has over the years taken Madopar, Sinemet, Requip and Azilect. She now only takes Madopar after I raised concerns to her neurologist about side effects like extreme mental confusion/non-responsiveness, a vocal tic, extreme punding behaviours (to the extent that one has to physically drag her away), no planning ability, overconfidence, mania coupled with relentless singing and humming, etc when the meds work. She basically acts like a completely different person that is in a high/zombielike state. The neurologist has since removed the DA and Sinemet (levodopa/carbidopa) from the equation but the side effects remain unchanged.

It has been 2+ years that my mom no longer takes he DA and so the only logical conclusion is that the Madopar is causing these horrible side effects. Yet all I read on this forum relates to side effects from DAs? I am desperately looking for pwps/carers who have observed these kind of side effects as a result of long-term levodopa therapy.

Note: I obviously understand that both levodopa as well as DAs provide incredible relief for many patients, as they have for many years for my mother. Please do not hold off from trying these meds out - this is a particular case of a young-onset dx patient that taken these medications for 20+ years.

Hi FridayintheSky,
I am so sorry that you and your Mum are suffering like this.
I understand that all Parkinson’s meds can trigger these behaviours but the statistics are far higher for DAs.
It seems that once the behaviours are established with DAs, stopping the meds usually stops or drastically lessens them.
In some people however it proves very difficult to halt them as the Levadopa still provokes them.
I wish I had an answer…
My husband has been in a nursing home for 4 years now and still has spells when the behaviours return.
It is so hard to cope with.
All I can offer is hugs and the hope that things will settle.
Try speaking with her consultant…new meds are hopefully appearing that might help.
Sending love,

Thanks so much @goldengirl for your kind words, I am very sorry too and hope you have found some peace knowing that your husband is in (hopefully) good hands. I am aware of the statistics, absolutely horrifying. Thankful though that there seems to be more awareness than a few years ago about these issues now.

Interesting what you mentioned re new meds - would you be able to share a few names or links?

Much love and strength to you!

I did PM you…but for others…Rytary seems to be doing well.
Levadopa in slow release form.
Rytary and Sinemet both contain the same medicines carbidopa and levodopa, which are used to treat Parkinson’s symptoms. The difference between them is how long each lasts in the body. Rytary lasts in the body longer than Sinemet (immediate release) and longer than Sinemet CR (controlled release).’

I am constantly anxious about absolutely every single little thing since I started Madapor in January 2022. I was only diagnosed then. Is this OCD. I didn’t feel anxious before. I mean, everything, worried I wont wake up on time, worried I forgotten something, worried I will be late for the bus, worried what an I going to eat, how am I going to get through a day at work, can I hold my tea cup in public, worried people will see my shaking. Absolutely everything. Is it normal or is the medication causing it?

Hi @Jacky3, :wave:t3:

I’m really sorry to hear that you’ve been experiencing such severe anxieties.

People with Parkinson’s may experience anxiety including feelings of unease, such as worry or fear. But there are lots of things that can help. We have more information on this via our website here.

We have a supportive community here so I’m sure you’ll hear from some other members with their own personal experiences and advice. However, in the meantime, you are always welcome to speak to an adviser via our free and confidential helpline who can offer you more support with your anxieties. Do give us a call on 0808 800 0303.

Best wishes,