Treating post-polio syndrome

There's currentlyno cure for p ost-polio syndrome, so treatment focuses on helping you manage your symptoms and improving your quality of life.

People withthe conditionare often treated by ateam of different healthcare professionals working together. This is known as a multidisciplinary team (MDT).

Members of your MDT may include:

• a neurologist a specialist inproblems affecting the nervous system
• a respiratory consultant a specialist in problems affecting breathing
• a consultant in rehabilitation medicine a specialist in managing complex disabilities
• a physiotherapist who helps people improve their range of movement and co-ordination
• a speech and language therapist who can help people withswallowing difficulties
• an occupational therapist who helps people improve the skills needed for daily activities, such as washing and dressing
• a mobility specialist who can give advice about mobility aids, such as walking sticks and wheelchairs

Some of the main treatments that may be recommended are outlined below.

Rest and exercise

Being active is thought to be beneficial for most people with post-polio syndrome, as it may slow down the progressive muscle weakness.

However, this can be difficult to achieve if you have the condition because your symptoms may feel worse aftera period of activity.

To overcome this problem, "pacing" techniques may be recommended. This involves:

• planning and prioritising tasks
• finding alternative ways of doing exhausting tasks and getting help from others when you need it
• taking regular breaks and having rest periods during the day
• doing regular gentle exercise this should be built-up gradually and stopped before you become exhausted or experience pain

For example, several smaller trips to a supermarket may be easier than one large shop. If driving to the supermarket and back is tiring, you may want to consider having home deliveries.

Pacing can mean you don't wear yourself out and areable to accomplish more activities over the space of a day than if you tried to do things without taking a break.

Many people withpost-polio syndromefind it hard toadapt to pacing at first. This is because when they had polio as a child, they may have beentold to make every effort to use their muscles, even if it caused pain and fatigue.

Nowadays, the advice is the opposite. It's now thought that making effective and efficient use of your strength and muscle function will help them last longer.

Painkillers

While pain and fatigue can often be reduced using pacing, various medications to help relieve pain are available if you need them. These include over-the-counter painkillerssuch as aspirin, paracetamol or Painkillers, ibuprofen ,and stronger anti-inflammatory drugs and opiates.

Over-the-countermedicines should not be used on a long-term basis without first talking to your GP. This is because some of them can cause complications, such as stomach ulcers , if taken over long periods.

Opiates, such as codeine, may cause drowsiness or depressed breathing (slow, shallow breathing) as well as other side effects, including constipation .

If these medications don't work, your GP may consider prescribing gabapentin for your pain.This medication was originally developed for epilepsy , but has also proved useful forpost-polio syndromepain when other types of painkillers haven't helped.

If you are taking medication to control your pain, you may not be aware of damage that could be caused to your muscles and joints by too much activity. It's therefore important to stick to your pacing regimen,even if you don't feel tiredor inpain.

Mobility aids

Mobility aids may make it possible to do many of the activities that were becoming difficult or impossible.

Mobility aids thatmay be ofbenefit to people with post-polio syndrome include:

• braces that can support weakened muscles and joints, improve posture and prevent falls
• walking sticks
• electric scooters
• wheelchairs

Many mobility aids are available for free on the NHS. Read about mobility equipment, wheelchairs and scooters on the NHS for more information about what's available and how you can access it.

Treating breathing and sleeping problems

If you have breathing difficulties as a result of post-polio syndrome, a number of treatments and lifestyle measures may be useful.

These can include:

• using a machine that deliverspressurised air into your lungs via a mask as you sleep this can help to stop your airways closing if you have sleep apnoea
• exercises to increase the strength of your breathing muscles
• havingthe pneumococcal vaccination and annual flu jab this can reduce your risk of getting serious chest infections

If you smoke, stopping smoking can also help.

Weight control and healthy eating

Being overweight can put further strain on weakened muscles and can have a negative effect on your energy levelsand general health. Losing weight, if you need to,may make your symptoms better.

While regular exercise is a good way of controlling your weight, it may not be possible because of your physical condition. You care team may be able to give you specific advice about this.

Following a sensible healthy eating plan will help you reduce and control your weight,as well as improve your health. It's important to eat a healthy,balanced diet , including foods that provide energy that are released slowly over long periods.

Trying new foods, new food combinations or new ways of cooking to widen the variety of tastes and textures and stimulate the appetite can be an enjoyable way to lose weight and improve your health.Your GP can refer you to a dietitian, if necessary.

You can also apply the pacing principles mentioned above to eating and cooking. For example, it may help to:

• plan your meals in advance
• break down cooking tasks into smaller, more manageable ones
• use days when you have more energy to prepare food and cook extra amounts to freeze for less energetic days
• use cookery books that contain simple, healthy meals that are quick to prepare, such as pasta or salads
• usekitchen equipment, such as food processors, microwaves and slow cookers, that can help you save time and energy
• tryready meals and tinned and packet foods if you feel too tired to cook a meal from scratch; however, you should avoid eating these too often, as they are usually high in salt, sugars and fats, and low in vitamins and minerals

The symptoms can be distressing, and developingpost-polio syndrome can often bring back painful childhood memories of living with polio.

It can often feel very cruel that, having struggled to overcome a polio infection during childhood, you're affected by polio again. This can lead to feelings of anxiety, isolation and stress, which can sometimes trigger depression .

If you have been feeling very down during the past month and you no longer take pleasure in things that you used to enjoy, you maybe depressed. See your GP if this is the case.A number of treatments are available that can help.

It's important not to neglect your mental wellbeing if you have post-polio syndrome. As well as the impact on your quality of life, feelings of depression and anxiety can alsointerfere with your treatment.

You may find it useful to talk to other people who are living with post-polio syndrome. Additionally, you may find The British Polio Fellowship'sonline forum to be a useful resource. The website also has details of useful organisations for people with the condition.