Off periods

About Parkinson's and health Treatments and therapies
1

Hi everyone,

Sorry, I’m new to message boards so please bear with me!

My dad has had Parkinson’s for about 5 years now, and recently things have taken a much more difficult turn, and I’m wondering if this is to be expected?

Over the past few months, his “on” periods are either very short or almost non-existent, while his “off” periods have become unbearable. By unbearable, I mean he becomes extremely anxious and restless, his motor symptoms go out of control, his breathing becomes laboured, and he experiences a whole host of other symptoms. It doesn’t even feel right to call them “off periods” anymore — they seem more like episodes or attacks.

A couple of questions I’m struggling with:

Is this kind of severe “off period” common or “normal” as Parkinson’s progresses?

Could his increased levodopa dosage (he’s been taking much more lately due to how awful off periods are) be making things worse, or could there be issues with withdrawal/overuse?

Is strange behaviour to be expected? Mood swings (literally crying into manic laughter in minutes), aggression, muttering nonsense, obsessiveness and almost like ADHD like behaviour.

We’ve been told he’ll be moving onto the pump treatment soon, and we’re really hoping this will bring him some quality of life back.

Right now, I’m feeling pretty lost and helpless. If anyone has been through something similar, I’d really appreciate hearing how you managed it and what helped.

Thank you so much if you managed to get through, any thoughts would be appreciated

2

Hello July, welcome to our community and well done on navigating our messaging board. Thank you for sharing you and your dad’s experience. That sounds really tough, it must be hard seeing your dad have a difficult turn and having more ‘off’ periods than ‘on’ periods.

If you have questions about your dad’s medication we’d always recommend speaking to your GP, specialist or Parkinson’s nurse. We’re also here to support you and your dad. Our confidential helpline is available for anyone who is affected by Parkinson’s, so we’re just a call away if you need us. You can call for free on 0808 800 0303. Our trained advisers are on hand anytime Monday to Friday 9am to 6pm and Saturday 10am to 1pm and we can put you in touch with a Parkinson’s nurse if needed.

People with Parkinson’s may experience a range of mental health issues alongside their physical Parkinson’s symptoms such as mood swings which your dad has been experiencing. We have information on Parkinson’s and mental health on our website which you might find helpful: Parkinson's and mental health | Parkinson's UK.

We’re sorry that you’re feeling lost and helpless right now. We want to let you know that you’re not alone and we’re here to support you. We hope others in the community will share their experience with you too.

Take care :blue_heart:

Parkinson’s UK Moderation Team

3

no personal experience of this here. i’m wondering whether your father in fact maybe has lewy body dementia? have the neurologists been asked about this possibility?

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Hi @July.Ventis80

Off periods are very common. It’s something I battle with regularly. In fact, everything you mention is common to some of us with PD, but not everyone.

I myself is on a high dose of Co-Careldopa plus other things. I still get ‘off’ times, but these have been reduced since i was put on Opicapone, a COMT inhibitor that blocks an enzyme which breaks down the Levadopa before it reaches the brain. Essentially it helps the absorption of most, if not all, of the Levadopa dose. Now this is one of many Inhibitors a PD patient can be prescribed.

Personally, Opicapone with my ‘dopa’ helps most of the time. I do need to watch what and when i eat though, especially in the forenoon when I occasionally experience wear off.

The anxiety and restlessness I can also relate to. I get like this when i feel I’m switching off. The feeling through the body I get is, lets say - uncomfortable. If I’m within 10 or 15 mins of my next dose of ‘dopa’, i take it and maybe go for a half hour rest somewhere quiet.

Mood swings; my wife would probably answer yes to that :rofl:

I suggest you speak to your dad’s PD medical team asap and ask if there are other meds available and suitable for him to help with his symptoms.

Cheers
D