Coping with 'on/off' changes
'On/off’ describes sudden changes in your symptoms throughout the day. Clinical neuropsychologist Jennifer Foley explores what these changes are and how to cope with them. You may find this article helpful if you experience these symptoms yourself, or if you care for or support someone who does.
What is 'on/off'?
After taking Parkinson’s medication for a long time, it can become less effective at controlling your symptoms.
This can mean that there may be times of the day when your medication appears to be losing its effect, and your motor symptoms (symptoms that affect movement), become more noticeable. For some people with Parkinson’s, this can be quite severe.
This is sometimes referred to as ‘wearing off’ or ‘off time.’ Your ‘on’ time is when your symptoms are well controlled. This usually happens before the next dose of Parkinson’s medication is due, but for others it can happen suddenly, and even after taking medication.
How can these changes affect me?
During off times, it is very common to feel very vulnerable, anxious or low. Some people also experience pain or feel unable to think clearly.
These feelings can happen very suddenly and usually pass quickly, but can feel overwhelming at the time.
How can I cope with these sudden changes?
Keep a diary and notice any patterns
Although off times can feel like they come out of the blue, there is often an underlying pattern. By writing down when they happen and how long they last, alongside when you take your medication, you may be able to see a pattern. By being more aware of this, you may be able to make better use of your on time, when your symptoms are well controlled. It will also help you prepare for your off times.
If you notice a pattern between your off times and medication, it is important to talk to your doctor about this. They may review and adjust your medication and when you take it, to avoid off times.
You may also want to consider if there is a link between your off times and your diet. What and when you are eating might be affecting your body’s ability to absorb your Parkinson’s medication. Talk to your doctor about this.
Use coping strategies
Coping strategies can help you anticipate and prepare for the off times and the negative emotions that they can bring. The right strategy will be different for each person. It’s likely you’ll feel the most benefit from using a combination of different coping strategies.
Rest and relaxation
Off times can make you feel that your body is out of control, which can cause anxiety and panic. Finding a way to allow your body to relax can reduce anxiety and the impact of the off time.
This might be through:
- mindfulness
- relaxation exercises
- self-massage techniques to help with painful areas of the body.
Physical activity and exercise
Doing regular aerobic exercise can help you maximise your on time, and may reduce the impact of off times. Doing gentle activities, like walking or stretching, or mindful exercises like yoga or pilates, might help during the off time itself.
You may find that the exercise can help relieve some of the stiffness and enable you to feel calmer and more able to cope.
Distraction
You may find it easier to cope with the off time if you are already in the middle of doing something. If you know when you are most likely to have off time, you may be able to plan an activity during that time.
This could be anything that might help distract you. From watching a funny or stimulating TV programme, doing a crossword or puzzle, to doing some gardening.
What if I struggle to cope?
It is very common to feel distressed during off times and sudden changes can be hard to cope with. Make sure to speak to your Parkinson’s nurse or specialist. As well as reviewing your medication regime, they may be able to offer other treatment options to help manage the changes.
They may also be able to refer you to a counsellor for mental health support.