Exercise and physio at home with Parkinson's, and keeping it going

Parkinson's UK says physical activity "can be as important as getting the right dose of medication", and that the more physically active a person is, the easier it is to live well with Parkinson's. Its physiotherapy page adds that research has shown regular, moderate to vigorous physical activity can help relieve some of the movement symptoms. It also says the right activity is different for everyone, so the amount above is a figure to aim towards with a physiotherapist's help rather than a target to start at.

NICE guideline NG71 is more specific about who should help. At recommendation 1.7.2 it says to consider referring people in the early stages to a physiotherapist with experience of Parkinson's, for assessment, education and advice, including information about physical activity. At 1.7.3 it says to offer Parkinson's-specific physiotherapy to anyone having problems with balance or movement. At 1.7.4 it says to consider the Alexander Technique for people with those problems too. The NHS page on treating Parkinson's describes a physiotherapist's aims as making movement easier, improving walking and flexibility, and building fitness and the ability to manage the condition day to day.

Neither source says that exercise slows the illness or replaces any tablet. What Parkinson's UK describes is help to keep a person moving and able to carry out daily tasks for as long, and as safely, as possible, alongside the medication and the rest of the care the Parkinson's care guide sets out.

Parkinson's UK on physiotherapy says the specialist, the Parkinson's nurse or the GP can refer, that some areas allow self-referral, and that an NHS service may have a waiting list. It also says NHS physiotherapists can visit people in their own home, and some offer video appointments. Its page on Parkinson's nurses explains that in England a community nurse can only see people registered with GP surgeries in their area, and a hospital nurse sees people under a consultant at that hospital, so ask the surgery which applies.

If your relative has no Parkinson's nurse, ask the neurologist or the GP directly for a referral to a physiotherapist "with experience of Parkinson's disease", and quote NICE NG71. For the general route to NHS or private physiotherapy at home, including checking that a private physiotherapist is registered, read physiotherapy at home, and keeping the exercises going, which covers that ground in full.

The occupational therapist matters more than families expect. Parkinson's UK says they can suggest cues that help a person start moving, give tips on scheduling tasks for when someone is feeling their best, and point to classes, walking groups or home workouts. A family member or carer can join the sessions, take notes and, with permission, film exercises so they can be practised later. If the house needs rails or equipment, the council's care needs assessment is free to ask for and can bring a council occupational therapist.

Parkinson's UK describes these on its pages for low-intensity and high-intensity activity. It says low intensity does not mean low effort, that a stretch or gentle movement still helps on a tired day, and that activity is most effective when a person pushes themselves. The last of those is the one to agree with the physiotherapist, because how hard to push depends on the person.

The NHS Grampian seated exercises leaflet is a useful picture of what a Parkinson's programme looks like: warm-ups in a chair, then larger movements done quickly, with the arms and legs working together. It is a real leaflet for real patients and it still says to do each exercise "as advised by your therapist". Treat it as something to show the physiotherapist, not a programme to start on.

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Parkinson's UK runs local groups for people with Parkinson's and their families, and says some have sessions led by a physiotherapist. Its local support finder searches by postcode for groups, activities and classes, and its helpline is 0808 800 0303. What each group runs, when and at what cost is for the group to tell you. A class also gets your relative out of the house among people who understand the illness, and Parkinson's UK says its groups are for anyone with a connection to Parkinson's, families included. A carer can take your relative there and back, and can carers take you out explains how that works.

The week above is an example, drawn with the same four doses as the example day on medication on time, every time. What it shows is where the sessions sit. Parkinson's UK says freezing is more common during an off period and that episodes tend to last longer then, so a walk started in the hour before a dose is due carries more risk than the same walk taken once a dose is working. Freezing and falls with Parkinson's explains why the clock matters so much for walking.

How long a dose takes to work and how long it lasts is different for every person, and it changes over time. The way to find your relative's good hours is a diary. For a week or two, write down each dose time, when movement eased, and when it stiffened again. 'Off' periods and what helps explains what to note and why the Parkinson's nurse wants it. Take the diary to the physiotherapist too, and ask them to say in writing which part of the day the exercises should go in.

Where you have a choice, ask for physiotherapy appointments at a time that fits a good stretch, and explain why, and pick a class whose time falls after a dose rather than before one. If the medication times change after a review, or over the months of programming after deep brain stimulation, move the exercise with them, because the old slot may now fall in the wrong part of the dose cycle. Never shift a dose to fit an exercise session: the timetable belongs to the Parkinson's nurse and the specialist, and NICE says Parkinson's medicines should not be stopped suddenly.

The Parkinson's UK home exercise guide suggests standing exercises for people whose symptoms are mild and seated exercises for people who have had Parkinson's for longer or whose symptoms are more complex. That choice is the physiotherapist's, not the family's. If your relative has already fallen, read Parkinson's UK on falls and dizziness, which says a physiotherapist can teach safe ways to get down to the floor and up again, and our guide to walking aids and how to choose before buying anything.

Parkinson's UK says that if a physiotherapist recommends exercises, the family should make sure they understand how to do the movements properly, so they can support the person to get the most out of them. It also says a physiotherapist can give advice on the best way to help someone move, and on looking after your own back. Ask for both at the first visit.

If family cannot be there on enough days, a carer can take some of them. That means prompting at the planned time, walking alongside on the walks, and keeping the notes. What fits in one hour, two hours, half a day shows how an hour's visit divides up, and writing a care plan together explains how to put the physiotherapist's sheet and the dose times into the carer's instructions. When you are ready, search for carers near you and compare their rates, and ask each one on the phone how they would fit a walk around a 3pm dose.