Hubby with PD (no tremor, mainly non-motor symptoms, with some stiff stoopy off times, now in 6th year) is increasingly constantly busy, doing obsessional cleaning, garden weeding etc… my friends say I should send him round their place, and that I should be pleased! But he is losing weight, never sits still and has sleep issues, getting up in the night often. This has gradually increased and crept up unnoticed. Having been away for a few days, I’ve come home and suddenly noticed it. There is something odd about it - it isn’t just someone being busy. There is an obsessional slant to it, and the only reason he has just come in from the garden tonight is it is getting dark! He spent 1.5 hours in the bathroom yesterday, without a stitch on, after his shower, cleaning the tiles… funny, but not right.
Anyone else experienced this? What are we dealing with here?
I know how he feels as I myself are in the same position, my hubby is always saying to me sit down and have a rest but it is very hard as in your mind every thing needs a clean also back of your mind is Parkinson’s phase (must keep moving) sorry I don’t have an answer to your question the only thing is just let him keep going as you do sit and relax eventually the only time that i really relax is when i go to my Tai-Chi classes. Don’t take this the wrong way doing Tai Chi really doe’s help but not as a martial art just for health reason’s the exercise and forms help me a lot.
Hi @dinky,
Great to see that you’ve already received some support from @mary1947. It sounds to me like your husband is displaying impulsive behaviour which could be a possible side affect to his Parkinson’s medication. If this is the case, treatment for this can involve reducing the daily dose of his medication or changing a dopamine agonist prescription to levodopa or another type of medication. I’d advise you speak to his GP or Parkinson’s nurse about this.
We have more information on impulsive behaviour on our website here - https://www.parkinsons.org.uk/information-and-support/impulsive-and-compulsive-behaviour. Our helpline and Parkinson’s local advisers are also here to answer any questions you have about impulsive behaviour. Feel free to give us on 0808 800 0303.
Best wishes,
Reah
Hi Dinky,
My husband has similiar issues and the same sort of PD. His obsession is with resorting his musical equipment, unplugging wires he can’t reconect and going round in circles with how he thinks things should be! I get very frustrated as I have set things up for him lots and lots of times, only to find the next day that it has all been dismantled!! He jeopardises his own creativity as he ends up not doing anything as he is so exhausted!!! Cleaning is not an issue, but if he has attempted anything in the garden it is in such a miniscule way that it is hardly noticeable and he then thinks he’s made a great contribution!! We think it’s a side effect of the Amantadine he takes. It seems harmless if very annoying. Paranoia is another thing that recurs, thinking people are speaking about him or can see him in his room when their obviously no-one there. This is such a complex and confusing illness, my husband has had it for 11 years and I still haven’t come to terms with it and expect that one he might wake up back to his old self! No magic words, tools or anything I can suggest to help you with dealing with this. Make sure you keep doing things that nurture you and give you space.
Meg
Oh boy, this is a familiar one – especially the gardening! Years ago my partner was out in the garden attacking it for hours on end while I was at work. Even tried to put up a heavy arbour – definitely a two-person job – and when it fell on them and hit them on the head, just carried on. Couldn’t agree more that this is probably a medication issue: dopamine agonists are known to cause this, Ropinirole, Rotigotine, etc. A consultant or PD nurse usually asks if this sort of behaviour is going on once a patient is on these meds. Sometimes a mild antidepressant is prescribed to roll off some of these effects, or the dose of the tablets can be reduced to reduce the obsessive behaviour.
And great to hear that your friends really “understand” what is going on. My partner is often irritated when people say “are you having a lie down? You must be tired” when it’s simply that the meds are “off” and there’s nothing that can be done other than lie down. I guess they mean well by making light of it, but stuff like obsessive actions can be quite a worry for carers. It’s a known syndrome, but it must be dealt with; there are numerous cases of people obsessively gambling, or other really hair-raising stuff they can’t stop, so do speak to a consultant or nurse about it when you are able. It can definitely be sorted out.
Totally get this. My husband just the same. Our neurologist warned us that this could happen and said to look out for it. We did and he reduced ropinerole. Friends can’t understand this type of thing. I’ve found it very destructive to family life. My husband has had PD for six years too but is only 57 and we still have children at home. He feels compelled to go off and potter when he’d in the past have been doing things with them. It’s been better since we reduced the ropinerole. Before that I was finding him absent from the bed at 3 in the morning and not in the house. I’d find him working on something in the workshop in his dressing gown. He said it was a kind of compulsion.
How nice to see your post. I think I have got used to it over the last few months, but his going to bed at 1am (because there is so much to do) is very wearing for me… I now go up to bed when I want to and put on eye mask and earplugs so he doesn’t disturb me when he comes to bed, and leave him to it. Then of course he can’t get up in the morning and is stiff and is generally ‘off’ till lunchtime. Not sure which is worse - ‘off’ or ‘on’!!!
Haha. I know what you mean. I got so fed up with all the broken nights I said I was going to sleep in the spare room twice a week so I at least got two night’s sleep. That shocked him into thinking about what it was doing to us and he begged me not to. So I laid down some ground rules about what I was prepared to put up with. We now always go to bed at the same time (like we used to pre PD) and if he’s not there in the night and I wake up, I send him a WhatsApp and he comes back to bed with me. Things much better. But I like your solution too orb in addition. Saw a great lavender filled eye mask the other day with ‘F**k Off’ in luminous pink on the front. Might get one.