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Any thoughts on ‘change of personality when ON or OFF’
Hi all,
I am not sure how to describe the issue we are having.
Whether it’s a cognition or personality issue or purely affected by meds or not, I am not sure.
But it’s extremely corrosive and upsetting for us both. The stress it causes is awful.I would be interested to hear if anyone else is noticing changes in their PD partner, or in themselves. My husband has PD, 30 years DX now. He is 60.
We have both noticed normally when he is fully ON, or nearly ON, that it’s difficult to discuss things of importance. Conversations quickly become fixated or concrete in thought pattern, there is an aggression of sorts, not physical, but mentally and things degrade into arguments to the point where I will terminate the conversation and go to another room to calm down and let him keep doing what he is doing, as I cannot change what is happening in his thoughts.
So now – if a decision is needed then we have to wait until he is on the way “OFF” meds or totally OFF. Then he is receptive to ideas that are not fixated and we have normal discussions where he agrees 100% that something happens with his cognition when he is ‘ON’ fully. He is on Sinemet CR 5 times per day, quite high dose. Dropping it down won’t work as it keeps everything else at bay.
This all probably sounds weird. But it’s what we are dealing with approx 3 times a day…
Any thoughts would be helpful as to whether this happens with yourself or someone with PD you know or care for. It’s very upsetting for us both and so toxic to our relationship and stress levels which aren’t good for anyone.Hope everyone has had a lovely Christmas and look forward to the New Year.
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16 Replies
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I am 71, was diagnosed with PD 3.5 years ago, and had many non-motor symptoms for years before that. My mother died in 2004 from PD, and I thought I knew a lot about PD from her lengthy experience. I was so wrong!
But I did learn that she would cry every evening, which she attributed to her daytime sinemet wearing off, and very stressful events interfered with the effectiveness of sinemet for her. She learned to predict her moods and to time her meds so she could enjoy lunch with friends. She learned to redirect her thoughts from tragic events (such as my brother’s suicide) to focusing on how she could help (such as his children) despite her limitations. She still cried every night, but it helped to know it would pass. Although my experience is different, it has helped me to be aware that my fluctuating emotions are influenced, and perhaps caused, by my fluctuating dopamine levels.
For example, at times I get anxious about committing to a future event because I don’t know how I will feel or how well I will function then. I worry about things that are very likely not to happen (like a possible car accident). I can have a very dark perspective on the future. But I also have periods of being unrealistic and overly optimistic during which I make plans I can’t complete. I have warned my family that my temperature fluctuations and fatigue can make me very irritable. I used to like change, but now I want predictable routines.
Sometimes I have told my husband I cannot discuss a decision because I am feeling too anxious to think about it. If the decision is minor, I tell him to just choose something. If it is major, we wait till I can think about it without panic or frustration.
Everyone agrees that PD affects each person differently, but I haven’t found much explanation re how PD causes psychological or cognitive effects. I can tell you, though, I function much better when I acknowledge that I am getting upset or stressed and remember that the conflict is not personal. Perhaps you can avoid “corrosive” and “toxic” harm to your relationship by accepting that keeping your husband’s dopamine level high enough to relieve his motor symptoms requires tolerating his periods of cognitive impairment (similar to that caused by cocaine). Even better would be adjusting his meds to smooth out the ups and downs if possible.
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Thanks Linda, sorry I replied on another persons post so have reposted this to you. That was a very well written reply and it responds well to what I have said. Yes I definitely need to be more patient and to time things so that the corrosive moments do not get to that stage of his ‘mood’ or ‘mode’.
It’s been a few weeks onwards now, and things have been a little better and I think its because he recognises the issues when he is fully ON and we are just being more tolerant with each other, especially with not overloading the situation, any situation with too many questions or deep discussions at that time.
My husband actually does like you do.. he tells me now when he just can’t discuss something and it’s very easy for me to accept and back right off. PD is such a disturbing stressful thing for anyone so it pains me to add to his stress, so we have to make this better and it feels like we are starting. What a learning curve though, after 2 years probably of this…. I can end by saying I hope it gets better, the modes, but I think it won’t.
His meds are well controlled for the time being with ON/OFFs but they still happen unfortunately. It’s a forever changing thing… but mainly every 4.5 hours. Thanks again Linda and sorry for the tardy response….. been a bit mad over Christmas. Happy New Year.
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I have a similar situation and find it very difficult to deal with anger and frustration that seems so unnecessary to me. It’s a very hard way to live. I don’t see much help in sight and continue to keep the faith and pray my children won’t be permanently harmed be such behavior.
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thanks Linda, that was a very well written reply and it responds well to what I have said. Yes I definitely need to be more patient and to time things so that the corrosive moments do not get to that stage of his ‘mood’ or ‘mode’.
It’s been a few weeks onwards now, and things have been a little better and I think its because he recognises the issues when he is fully ON and we are just being more tolerant with each other, especially with not overloading the situation, any situation with too many questions or deep discussions at that time.
My husband actually does like you do.. he tells me now when he just can’t discuss something and it’s very easy for me to accept and back right off. PD is such a disturbing stressful thing for anyone so it pains me to add to his stress, so we have to make this better and it feels like we are starting. What a learning curve though, after 2 years probably of this…. I can end by saying I hope it gets better, the modes, but I think it won’t.
His meds are well controlled for the time being with ON/OFFs but they still happen unfortunately. It’s a forever changing thing… but mainly every 4.5 hours. Thanks again Linda and sorry for the tardy response….. been a bit mad over Christmas. Happy New Year.
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Hi Rosie, I used to feel like you in that I didn’t understand why the anger and frustration was being taken out on me until I started thinking like Linda says above…. it’s not ‘his’ fault. It’s the PD for most of the issues that we are having.
I have just started thinking this many times things escalate and it helps immensely and makes me, I don’t know – feel more humbled in our relationship I think..
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Please feel free to reply to any and all comments. It would be deeply appreciated.
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Please feel free to reply to any and all comments. It would be deeply appreciated.
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I also feel that this is what my husband and I are experiencing. It has become very difficult to discuss anything. No matter how small or trivial, it will send him into stress mode and an argument. Have tried many ways of approaching discussions, none of which have worked. I am afraid of causing him stress and anxiety, but I am becoming frustrated as how to deal with decisions he needs to be a part of. He can not even stand to be with a group of people, even family.
I do not fully understand what people mean when they say “ON” and “OFF” times. Can someone explain this to me?
I would gladly try dealing with decisions in any way that would help!!!
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Hi Therese, I have wondered over the past week if the degradation into arguments is actually partially caused by the loss of things that are important to him or your husband. The PD takes and takes from them, and from you and I also. The last 18 months has been seemingly faster progression of the PD I feel. His executive functions are seemingly taking a hit, maybe it was after catching Covid even that the brain fog and short term memory took a hit, not sure. Stress and anxiety are certainly an issue for all of us and the worst thing for PD people I reckon. Unfortunately I don’t think there is an easy answer as to how to help. I am finding I need to listen acutely to him when he speaks as I can determine where he is at cognitively and decide what I want to discuss of importance at that time. It’s easier to discuss
On and Off times explanation: When a person is OFF. This is when the person has run out of meds in the system. They start ‘wearing off’ from being ON. ON is when they are fully medicated to the optimum – full of Dopamine so to speak – when the meds are ‘full’ in the system. For my husband the Sinemet CR 200/50 and Sinemet 100/25 are his meds. WEARING OFF is the time between peak ON time and OFF. The meds are slowly being used and running down to near nothing. It’s not optimum to be totally OFF but it’s a difficult thing to determine WHEN to take the next dose. Some people will take doses at specific times each day, but the trouble with that, in my husbands case is he could easily then be over medicated which is just as bad as being off for him. Dyskinesias start in the head and neck area…. so there is no point taking too much Sinemet for him. Hope that clarifies a little. Sorry – not so great a clarifying.
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Hi JB
Because PD affects everyone differently it’s difficult to know the source of frustration in communications. For myself I have brain fog issues when I just can’t process what I’m reading or hearing and that triggers my anxiety and depression. I have been seeing a psychologist, for the past year, who specializes in neurological disorders which has been very helpful in my communications, in reducing my anxiety or helping me from escalating and has allowed me to better accept my challenges and to give myself grace. It’s also helped me to be more aware of how I’m feeling and when it is or isn’t a good time to tackle projects, problems, decisions or conversations. I’ve also found that days of greater fatigue are not good for my cognitive processes.-
I can only agree Kathleen that my husband definitely finds projects, or more than one thing at a time to have to do, totally difficult. A To do list has been impossible, so I do them and try to help that way. I find it so difficult when he changes after taking meds, from a kind caring non confrontational person to a more argumentative person as he gets more Dopamine to the brain.
He is clearer, more articulate which is great, really great, but also fixated and concrete in thought so as I said above, difficult for decision making if there are differences of opinion.
I wish you well, it sounds like the Psychologist you have is great.
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For me, when the meds are on I am much more likely to do or say something out of character. By that I mean engage someone in political discussion who I know will not appreciate my views, or accuse a friend of doing something harmful to me, or make a risky driving maneuver. When meds are off I am more likely to just sit and be quiet. It causes problems at times because my wife does not fully appreciate the emotional roller coaster I ride with the meds. When I clam up and she is carrying the load of conversing with friends she will poke at me under the table. I just sit there. It’s awkward.
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Thank you all for sharing your experiences. Mine might be somewhat different, but hearing from you helps me remember I am not going crazy. It is the disease or the medication and will pass soon.
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Dear JB:
Thank you for raising what has become an issue in our relationship. Sometimes, when I get a little too amped up, a bit overmedicated, too “on,” I can turn into a self-righteous argumentative asshole. I can drive too to fast, become extremely garrulous and loquacious, and almost incapable of seeing or hearing any other points of view. I will make ridiculous plans that I end up having to cancel. Fortunately my lovely wife has been prepared to weather the very worst stormclouds by telling me in no uncertain terms that I am being an asshole. We can sometimes manage to laugh about it, and about ourselves.
The trick for me is to recognize that none of these PD-induced altered states having anything to do with who I am as a person, the person I have always been, deep down, the person my wife loves. We must recognise these dysfunctional states and we know not to trust them or make decisions when in their grip, we must try to understand the awful effect they have on loved ones around us, and we must know that they will pass …-
Hi John, WOW – I must say I was beginning to think I was imagining everything and that it was me not being understanding enough. I THANK YOU wholeheartedly for your post. My husband happened to be sitting next to me and read it with me. It’s exactly how he is when ‘ON’. I wonder why it happens?
It’s really heart warming that you recognise that this isn’t who you are as a person. My husband has said that as well, but it doesn’t change the fact that yes – he is ‘not so nice’ in this state. I am hoping he will take on board what you have said.
I send you big hug and wishes, to your wife also…. it’s the deep affection and love we have for our husbands that keep us going and a post like this, amazing !
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Thanks to all who have replied to this tricky subject. I have found all responses helpful and it makes me feel better knowing that this is a common issue. Lately, I have found that agreeing with everything right off the bat makes things more manageable. We might end up changing our minds on things but the avenue of least resistance has been a way to more gently come to an agreement on most subjects or decisions. Thank you again, for everyone’s honest and open responses.
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