The short answer
- An off period is the medication level fallingEach dose takes hold, works for a stretch of hours and fades. The symptoms it was holding back return until the next dose works. That stretch is the off period.
- It is not only slownessPain, anxiety, low mood, sweating and a quiet voice can all arrive with an off period. A face that shows nothing is a symptom of the illness and not a mood.
- Waiting with them is the helpThere is no way to end one early. Sitting down, keeping the room calm and leaving them a task they will finish in twenty minutes does more than stepping in.
- The nurse works from timesWhen the pattern changes, write down when each dose was taken, when the off period started and how long it lasted. That is what a medication review is built on.
Nothing on this page is a reason to change a dose or a time. Those decisions belong to the specialist, the Parkinson's nurse and the GP.
What an off period is
The hours when the medication is not holding the symptoms back
Parkinson's medication tops up dopamine, the chemical the brain has stopped making enough of, and levodopa is the main one. A dose takes hold, works for a stretch of hours and fades, and the symptoms return until the next dose works. Those stretches in between are the off periods.
The NHS explains why they appear. Levodopa can make a large difference at first, but its effects become less long-lasting over the following years, because as more nerve cells in the brain are lost there are fewer left to absorb the medicine. Long-term treatment is also linked to the on and off effect, where a person switches between being able to move and being unable to.
An off period is not a relapse, and it is not something anybody has done wrong. It is a level falling and then coming back up, and knowing that changes how the hour feels for everyone in the house.
Four patterns, drawn across the hours between one dose and the next
On Off
Wearing off
The dose works, and then stops working before the next one is due.
The morning goes well and then, an hour before the next tablet, everything slows down again. This is the pattern families notice first.
Delayed on
The dose is taken on time, and takes much longer than usual to work.
The tablet went down at seven and nothing has changed by half past eight. Waiting is uncomfortable for everyone, and hurrying does not bring it forward.
Dose failure
A dose does not take hold at all, and the off period runs into the next one.
Nothing happens after the tablet. The next dose may work normally, so one bad stretch does not mean the medication has stopped working.
Unpredictable on and off
The switch happens suddenly, and not always where the dose times would put it.
They are walking about, and a few minutes later they cannot get out of the chair. People describe it as a switch being flicked.
The shapes are illustrative and carry no clock times. How long each stretch runs is different for every person, and the Parkinson’s nurse or specialist is the one who works it out with them.
Those four names come from the movement changes guidance published by Parkinson's UK, the charity for people with Parkinson's in this country, and they are the ones the nurse will use. Wearing off is the one families notice first. The other three matter because a dose that works late, or not at all, feels like something has gone badly wrong when it has not.
Not only slowness
The parts of an off period that are easy to misread
Slower, stiffer movement is the part everybody expects. The rest is harder to recognise, and a family can spend a long time putting it down to mood, tiredness or old age instead.
Pain and cramping
Comes and goes with the doses
Anxiety, low mood and sleepiness
Not a reaction to the day
Sweating, or feeling too hot or cold
A body that is not regulating
Getting stuck on the way through a doorway
More likely during an off period
A voice that has gone quiet
Loud on, hard to hear off
A face that does not show what they feel
Not sulking, and not a mood
Knowing this list stops the wrong conversation happening. A daughter who reads a flat face as her father withdrawing, or a slow answer as confusion setting in, ends up worried about something that is not there. What is worth saying instead is the time it started, and whether it went when the next dose worked. Where a dementia diagnosis has been made as well, Lewy body dementia brings swings in alertness of its own, and separating the two patterns starts with the same written times.
Freezing sits in its own guide: what happens when someone freezes, and how to lower the risk of a fall covers the cueing that gets somebody moving again and the changes around the house that help.
While it lasts
What to do in the twenty minutes you cannot shorten
There is no way to bring an off period to an end early. What a family or a carer can change is how the person gets through it, and whether they come out of it with their confidence intact.
What helps
- Sit down with them rather than watching from the doorway, so the waiting is shared
- Leave them a slow task they will finish in twenty minutes, because finishing it matters to them
- Turn the television down and keep the room quiet while they concentrate on moving
- Ask what they want help with, then help with that part and no more
- Stand beside them when they get up, and support their balance rather than pulling them along
- Give them the time to reach the end of the sentence themselves
What makes it harder
- Hurrying them, which makes freezing and a fall more likely
- Doing the buttons, the sentence or the meal for them because it is quicker
- Talking across them to someone else in the room about what is happening
- Reading a blank face as sulking or a slow answer as confusion
- Booking the shower, the outing or the appointment into the hour they are usually worst
- Changing a dose or a time to get through it, which is a decision for the Parkinson's nurse or the GP
Sitting down is the part people find hardest, because it looks like doing nothing. Standing over somebody who is stuck adds the feeling of being watched to everything else they are dealing with, and hurrying is what turns a slow walk into a fall. The same goes for tasks. If getting a cardigan on will take twenty minutes and they want to do it, taking it over saves the time and costs something that is harder to get back.
A carer who has worked with Parkinson's before will know all of this without being told, which is one reason having the same carer at every visit is worth arranging. Somebody who comes three mornings a week learns the shape of your relative's day faster than any handover note, and notices the week it changes.
The good hours
Building the day around the stretches that work
Once the pattern is clear, the day can be arranged around it. This is the piece of ordinary planning that gives back some of what the illness takes, and it costs nothing to try.
| When to plan it | Why it goes better then | |
|---|---|---|
| A shower or a bath | An on period, with time either side | Standing, turning and stepping over the side of a bath all need balance, and balance is at its worst during an off period. |
| Going out | The best stretch of the day | Getting stuck in a car park or a shop doorway is frightening in a way getting stuck at home is not. |
| A meal that needs chewing | While the medication is working | Swallowing is slower in an off period, and coughing at meals is always worth reporting. |
| Appointments and visitors | A good stretch, where you get a choice | It is worth asking a clinic for a time that fits the tablets, and explaining why. |
| Rest, television, phone calls | The off stretches | These do not need steady feet or steady hands, so they fit the hours that offer neither. |
A shower or a bath
- When to plan it
- An on period, with time either side
- Why it goes better then
- Standing, turning and stepping over the side of a bath all need balance, and balance is at its worst during an off period.
Going out
- When to plan it
- The best stretch of the day
- Why it goes better then
- Getting stuck in a car park or a shop doorway is frightening in a way getting stuck at home is not.
A meal that needs chewing
- When to plan it
- While the medication is working
- Why it goes better then
- Swallowing is slower in an off period, and coughing at meals is always worth reporting.
Appointments and visitors
- When to plan it
- A good stretch, where you get a choice
- Why it goes better then
- It is worth asking a clinic for a time that fits the tablets, and explaining why.
Rest, television, phone calls
- When to plan it
- The off stretches
- Why it goes better then
- These do not need steady feet or steady hands, so they fit the hours that offer neither.
No grid survives an unpredictable off period. The point of one is that the hardest tasks are not booked into the hour they are hardest.
For a family who cannot be there at the worst point of the day, this is the shape a paid visit takes: not somebody all day, but an hour or two at the stretch where the medication is at its lowest, which in many houses is first thing before the morning dose has worked. Carers on PrimeCarers charge £18 to £25 an hour with our fee included, against £28 to £35 at an agency. You can search for carers near you and compare the visit times they can offer, and ask each of them about the hours you are worried about rather than a weekly total.
Something else happens as off periods take up more of the week. People stop arranging things, because it is not worth the risk of being caught out in the wrong hour, and a diary that used to hold a club and a lunch empties. Companionship care is the name for visits that put something back into it: a walk, a hand of cards, a lift to something your relative used to go to, at around £15 to £20 an hour.
Too much movement
When the problem looks like the opposite of an off period
There is a second kind of movement change worth knowing about, because a family watching it happen can reasonably reach the wrong conclusion about it.
Dyskinesia is involuntary movement the person cannot control: twitches, jerks or twisting movements. Parkinson's UK explains that some people get it after taking their medication, when levodopa levels are higher, which is why it is sometimes called peak dose dyskinesia.
Restless movement can look like the illness running out of control, and the instinct is to think the medication is not doing enough. The timing can point the other way, and where a family sees too little medication, the specialist may be looking at a level that is too high at that point in the day.
This page goes no further than naming it, because the balance between too little movement and too much is a clinical judgement, and it belongs to the specialist and the Parkinson's nurse. What they need from the house is the timing. Write the restless movements down as carefully as the stiff ones, with the hour and how long after the last dose, and take both to the appointment.
The words you will hear, and what each one means
- On and off
- On is the stretch when the medication is working and movement is at its easiest. Off is the stretch when it is not.
- Wearing off
- Medication that does not last as long as it used to, so the off period arrives before the next dose is due.
- Delayed on
- A dose that takes much longer than usual to take hold.
- Dose failure
- A dose that does not take hold at all.
- Dyskinesia
- Involuntary movements the person cannot control, which for some people come when the level of medication is at its highest rather than its lowest.
- Freezing
- The feet stopping while the person is still trying to walk. More likely during an off period, but not the same thing.
What to write down
The diary a Parkinson's nurse asks for when the pattern changes
When the off periods change, the specialist or the Parkinson's nurse will ask what the day looks like now. They are not asking for an impression of the month. They are asking for times.
- 1
Keep a week of times
A sheet of paper is enoughParkinson's UK suggests recording when the symptoms and changes happen, how long they last, when the medication was taken and at what dose, and any new symptoms. A week of that shows a pattern no amount of describing will. - 2
Write what it looked like, not only that it happened
Two lines each timeCould they stand up unaided? Could you understand them? Was there pain, sweating or anxiety with it? Were there involuntary movements, and how long after the dose? A carer coming in for visits can add their part to the same sheet. - 3
Put it in the care plan as well
So everyone works from itThe pattern of the day belongs in the written plan a carer works from, alongside the dose times, so that a new person is not starting from scratch. - 4
Ring sooner if something changes quickly
Same day, not the next appointmentIf your relative cannot swallow their tablets, has been sick and cannot keep them down, or has become suddenly and severely worse rather than gradually, that is a call to the GP or 111 the same day. Parkinson's UK says a sudden severe deterioration of this kind needs emergency help.
Taking a written week into the appointment changes what comes out of it. A specialist with times in front of them can see whether the trouble is the gap between doses, a dose that is failing, or something with nothing to do with the medication at all. The care plan guide covers where all of this is written down for the people who come in.
Questions
Questions families ask about off periods
It is the stretch of time when Parkinson's medication is not holding the symptoms back, so they return until the next dose takes hold. Movement becomes slower and stiffer, and there can be pain, anxiety, low mood, sweating and a quiet voice with it. The opposite stretch, when the medication is working, is called an on period.
There is no single answer. Wearing off arrives towards the end of a dose and lifts when the next one works, while a dose that takes hold late, or not at all, makes for a longer stretch. The length is different for every person and changes over time, so the useful thing a family can do is write down when each one starts and ends. That record is what a medication review is built on.
It means the medication is not lasting as long as it did. The NHS explains that levodopa becomes less long-lasting over the years, because as more nerve cells are lost there are fewer left to absorb it. Parkinson's UK says that if these changes are affecting day-to-day life, the specialist or Parkinson's nurse should review the medication. It is a reason to ask for an appointment rather than to accept things as they are.
Stand beside her, hold her arm and support her balance instead of pulling her forward. Give her something to move to, such as counting out loud or saying ready, steady, go, and let her shift her weight onto one leg before stepping with the other. Take away distractions and do not hurry her. There is more in the guide to freezing and falls.
Yes. Visits are booked by the hour with a one-hour minimum, so a morning call before the first dose has worked, or an evening one, is a normal arrangement. Carers on PrimeCarers charge £18 to £25 an hour with our fee included, against £28 to £35 at an agency. If the difficult stretches are at night, night care for Parkinson's covers what that looks like.
What a carer does with medication is agreed directly between you and them, and it ranges from prompting to giving the tablets. PrimeCarers checks a carer's identity, their right to work and an enhanced DBS on the Update Service, and interviews them online. We do not check training or qualifications, so what a carer tells you about their Parkinson's experience is their own account for you to ask about. What carers can and cannot do with medication sets out the ground, and keeping to the dose times covers the timetable.