Parkinson's disease

Parkinson’s disease is a condition in which part of the brain becomes progressively more damaged over many years (a progressive neurological condition).

Introduction

Parkinson’s disease is a condition in which part of the brain becomes progressively more damaged over many years (a progressive neurological condition).

The three main symptoms of Parkinson’s disease are related to movement:

  • involuntary shaking of particular parts of the body – known as tremor
  • muscle stiffness that can make everyday tasks such as getting out of a chair very difficult – this is known as rigidity
  • physical movements become very slow – known as bradykinesia

A person with Parkinson’s disease can also experience a wide range of symptoms unrelated to movement (non-motor symptoms) such as:

Read more about the symptoms of Parkinson’s disease.

Treating Parkinson’s disease

There is currently no cure for Parkinson’s disease though a medication called levodopa has proved effective in relieving symptoms.

Unfortunately after around 3-5 years use the effectiveness of levodopa is reduced.

After this time people can experience a sudden return of symptoms (this is known as an ‘off episode’) as well an involuntary jerking of their muscles (dyskinesias). At this point additional medication is usually required.

There are also a range of non-pharmaceutical treatments that can be used to manage symptoms, such as speech and language therapy and physiotherapy.

Read more about the treatment of Parkinson’s disease.

What causes Parkinson’s disease?

Parkinson’s disease is caused by a loss of nerve cells in part of the brain called the substantia nigra. This leads to a reduction in the amount of a chemical called dopamine in the brain.

Dopamine plays a vital role in regulating the movement of the body and this reduction in dopamine is responsible for many of the symptoms of Parkinson's disease.

Exactly what causes the loss of nerve cells is unclear. Most experts think that a combination of genetic and environmental factors is responsible.

Read more about the causes of Parkinson’s disease.

Who is affected

The average age for the symptoms to start is around 60; although around 1 in 20 cases first develop in people aged under 50.

Men are one-and-half times more likely to get Parkinson’s disease than women.

The ethnic group most likely to develop Parkinson’s disease is white people. Rates are significantly lower in black and Asian people.

Outlook

Parkinson’s disease is not fatal but the condition can place great strain on the body.

Some people respond well to treatments and only experience mild to moderate disability, while others experience severe disability.

Due to the advancements in treatment, people with Parkinson’s disease now often have a normal or near-normal life expectancy.

Symptoms

The symptoms of Parkinson's disease usually begin slowly and develop gradually, often in no particular order.

Parkinson's disease affects people in many different ways with a variety of symptoms and responses to treatment. Severity of the symptoms also varies between people.

It would be unlikely for a person to experience all or most of the symptoms listed in this section.

Types of symptoms

Potential symptoms can vary widely but are within three broad categories:

  • symptoms that affect physical movement – known as motor symptoms
  • symptoms that affect mood, thinking and behaviour – known as neuropsychiatric symptoms
  • symptoms that affect your autonomic nervous system (the nervous system that controls your 'automatic' functions such as breathing and urination) known as autonomic dysfunction – see below for more details

Common motor symptoms

These three are the most common motor symptoms:

Tremor

The most common initial symptom is uncontrollable shaking, known as tremor. Shaking usually begins in the hand or arm. It is more likely to occur when the limb is at rest and can be more noticeable when the patient is stressed, anxious or tired. Shaking usually decreases when the limb is being used.

The presence of a tremor does not necessarily mean that you have Parkinson's disease. Tremor is also a symptom of other conditions and is usually due to a harmless condition called essential tremor.

Slowness of movement (bradykinesia)

Parkinson's disease can make your physical movements much slower than normal, particularly when you try to start moving. The medical term for slowness of movement is bradykinesia.

People have reported that they try to move the affected body part at a normal speed but ‘the messages just seem not to get through’.

Often the first sign of bradykinesia is that you no longer swing one of your arms when walking.

Everyday tasks, such as buttoning clothes, writing with a pen and opening jars, can become difficult and time consuming.

Bradykinesia can affect your legs resulting in a distinctive slow and shuffling kind of walk with very small steps. And occasionally, in more advanced cases, a person can temporarily lose the ability to walk and their feet become ‘frozen to the floor’.

Bradykinesia can also affect the face and voice leading to a loss of normal facial expressions. A person also blinks less than usual.

Stiffness of muscles (rigidity)

People with Parkinson's disease also experience stiffness and tension in their arm and leg muscles. This is known as rigidity.

When examining people with Parkinson’s disease, doctors can feel two different types of rigidity:

  • ‘lead-pipe rigidity’ – where there is a feeling of constant resistance in the affected muscles
  • ‘cogwheel rigidity’ – where there is resistance in affected muscles followed by relaxation; as if you were rotating a cogwheel

Other motor symptoms

Dystonia

Some people with Parkinson’s disease can experience involuntary muscle cramps, spasms and contractions. These can occur independently but can also be a response to the dopaminergic drugs.

In cases of Parkinson’s disease dystonia usually affects the muscles in the calves and feet, though occasionally other parts of the body can be affected, such as:

  • hands
  • head
  • neck
  • eyelids

Read more about dystonia.

Postural instability

In some cases of more advanced Parkinson’s disease a person loses much of their natural sense of balance. This is known as postural instability and can be a leading cause of falls and injuries.

Neuropsychiatric symptoms

Depression

Depression is thought to affect up to half of people with Parkinson’s disease and is thought to arise from a number of complex and inter-related factors, such as:

  • the reduction of dopamine and other chemicals inside the brain (dopamine can have a powerful influence on mood)
  • the stress of living with Parkinson’s disease
  • the impact that Parkinson’s disease can have on your relationship with others

Signs you may be depressed include:

  • feeling down, depressed, or hopeless during the past month
  • having little interest or pleasure in things you used to enjoy during the past month

Depression can seriously impact on your quality of life; if it occurs discuss treatment with your doctor.

Read more about depression.

Anxiety

Anxiety can also affect people with Parkinson’s disease especially once treatment with levodopa becomes less effective and they start to experience ‘off-episodes’ (a sudden return of their motor symptoms).

The sudden return of symptoms can make people feel anxious, and in the most serious cases, trigger a panic attack.

Read more about anxiety.

Mild cognitive impairment and dementia

If you are in the early stages of Parkinson’s disease you may experience what is known as mild cognitive impairment.

This means your pattern of thinking can become disrupted and you have problems with activities that require planning and organisation.

Around 40% of people with advanced Parkinson’s disease go on to develop a more severe form of cognitive impairment known as dementia.

Symptoms of dementia in people with Parkinson’s disease include:

  • significant problems with memory, learning new information and understanding written and spoken language
  • sudden outburst of emotions such as anger, excitement and frustration
  • difficulties recognising previously familiar people and places
  • poor concentration and low attention span
  • visual hallucinations (seeing things that are not real)
  • delusions (believing in things that are not true)

Having both hallucinations and delusions and being unable to tell the difference between your imagination and reality is known as psychosis.

Read more about dementia.

Sleep disturbances

Insomnia (problems sleeping) is thought to affect around half of those with Parkinson’s disease.

Periods of insomnia often come and go over the course of the disease.

Causes of insomnia are often complex. They can include changes to the brain, side-effects of some of the medications used to treat Parkinson’s disease, breathing difficulties during sleep, abnormal movement during sleep and the natural effects of aging.

Read more about insomnia.

This in turn can cause excessive daytime sleepiness and sudden dozing during the day. Some medications used to treat Parkinson’s disease can also make you feel drowsy during the day.

Autonomic dysfunction

Your autonomic nervous system is the part of your brain and nervous system that regulates functions of your body that you do not have to think about, such as breathing, swallowing, digesting food and passing urine.

The changes in brain chemistry that occur in Parkinson’s disease can disrupt many of these functions and cause the following:

  • problems with urination – such as having to get up frequently during the night to urinate and, or separately from, urinary incontinence (the unintentional passing of urine)
  • constipation
  • in men – inability to obtain or sustain an erection (erectile dysfunction)
  • in women – difficulties in becoming sexually aroused and achieving an orgasm
  • a sudden drop in blood pressure when moving from a sitting or lying position to a standing one (orthostatic hypotension) – this can cause dizziness, blurred vision and in some cases fainting
  • excessive sweating (hyperhidrosis)
  • difficulties swallowing (dysphagia) – which in turn can lead to malnutrition (not having enough nutrients in your diet) and dehydration (not drinking enough fluids)
  • excessive production of saliva (drooling)

Causes

Loss of nerve cells

Parkinson's disease is caused by a loss of nerve cells in the part of the brain called the substantia nigra.

Nerve cells in this part of the brain are responsible for producing a chemical called dopamine. Dopamine acts as a messenger between the brain and the nervous system, and helps control and co-ordinate body movements.

If these nerve cells become damaged or die, the amount of dopamine in the brain is reduced. This means that the part of the brain controlling movement cannot work so well, which causes movements to become slow and abnormal.

The loss of nerve cells is a slow process. The level of dopamine in the brain falls over time. Only when 80% of the nerve cells in the substantia nigra have been lost will the symptoms of Parkinson's disease appear and gradually become more severe.

It is not known why the loss of nerve cells associated with Parkinson's disease occurs.

Research is ongoing to identify potential causes.

Genetics

In rare cases Parkinson's disease can run in families; in this situation abnormal genes are responsible, but the exact role genetics plays in causing ordinary (sporadic) Parkinson's disease is unclear.

So far at least nine genetic mutations have been identified as increasing a person’s risk of developing Parkinson’s disease (a genetic mutation is when the instructions carried in all living cells become scrambled in some way, meaning that one or more functions of the body does not work as it should).

However it is thought that in most cases genetics is not solely responsible for Parkinson’s disease and there needs to be an environmental factor to trigger it in genetically susceptible people.

Environmental factors

Some researchers think that exposure to toxins (harmful chemicals) could be the environmental trigger. Possible toxins could include:

  • pesticides and herbicides used in farming
  • toxins released by industrial plants
  • air pollution related to road traffic

Arguably the most compelling evidence that toxins play a role is that drug users who injected themselves with a heroin substitute called MPTP went on to quickly develop symptoms similar to Parkinson's.

It was found that once MPTP crossed into the brain it started killing brain cells. It is possible other toxins could have a similar effect.

Diagnosis

No tests can conclusively show that you have Parkinson's disease. Your doctor will base a diagnosis on your symptoms, medical history and the results of a clinical examination.

Your doctor will question you and may get you to perform a task or walk around. This will help with the diagnosis.

In the early stages, your doctor may find it difficult to say whether you definitely have the condition because symptoms are usually mild.

If your doctor suspects Parkinson's disease, you will be referred to a specialist (a neurologist or geriatrician). If your doctor thinks you may be in the early stages of Parkinson’s disease, you should see a specialist within six weeks. If they think you may be in the later stages of Parkinson’s disease, you should see a specialist within two weeks.

The specialist will be likely to ask you to perform a number of physical exercises so they can assess whether you have any symptoms affecting movement (motor symptoms).

A diagnosis of Parkinson’s disease is likely if you have at least two of the three following symptoms:

  • uncontrollable shaking in a part of your body (tremor) that usually only occurs at rest
  • slowness of movement (bradykinesia)
  • muscle stiffness (rigidity)

The medication levodopa is often prescribed to help diagnose Parkinson’s or rule out other conditions.

If your symptoms rapidly improve after taking levodopa then it is highly likely you have Parkinson’s disease.

Receiving the diagnosis

Being told you have Parkinson’s disease can be emotionally devastating, and the news can often be difficult to take in. Therefore, at this time, it is important that you have the support of your family and care team who will be able to help you come to terms with the diagnosis.

Treatment

Treatment overview

You may not need any treatment during the early stages of Parkinson's disease as symptoms are usually mild. However, you could require regular appointments with your specialist so your condition can be monitored.

At the moment, there is no cure for Parkinson's disease. However, numerous treatments are available to help control symptoms and maintain your quality of life. These may be supportive therapies that help you cope with everyday life, or medication to control your symptoms. For some people with a particular pattern of symptoms, surgery may be an option.

You should agree a care plan with your healthcare professionals and your family or carers, and this should be reviewed regularly.

Supportive therapies

There are several therapies that can make living with Parkinson's disease easier and can help you deal with your symptoms on a day-to-day basis.

Physiotherapy

A physiotherapist can work with you to relieve muscle stiffness and joint pain through movement (manipulation) and exercise. The physiotherapist aims to make moving easier and improve your walking and flexibility. They also try to improve your fitness levels and your ability to manage things for yourself.

Occupational therapy

An occupational therapist can identify areas of difficulty in your everyday life, for example dressing yourself or getting to the local shops. They can help you to work out practical solutions and ensure your home is safe and properly set up for you. This will help you carry on as normal for as long as possible.

Speech and language therapy

About half of people with Parkinson's disease have problems communicating, such as slurred speech or poor body language. If you have communication problems, a speech and language therapist can help you improve your speech and use of language. They may use vocal exercises or equipment to help you make yourself understood.

Diet advice

Some people with Parkinson’s can experience constipation (difficulty passing stools). This can be helped by increasing the amount of fibre in your diet and making sure you are drinking enough fluid. Fibre is found in fruit, vegetables and cereals. You should be drinking six to eight glasses (1.2 litres) of fluid every day.

Another common problem is orthostatic or postural hypotension. This is low blood pressure when you change position, particularly after standing up too quickly. If you have orthostatic hypotension, your doctor may advise that you increase the amount of salt and fluid in your diet.

Hypotension can also be helped by:

  • avoiding caffeine in the evenings
  • eating frequent, small meals, rather than large ones
  • avoiding alcohol

Around 50% of people with Parkinson’s disease will experience some unintentional weight loss. Your doctor may refer you to a dietitian (a healthcare professional trained to give diet advice) if you may benefit from changing your diet.

Medicines

Medicines may be used to treat the symptoms of Parkinson’s disease. Not all medicines are useful for everyone, and the short and long-term effects of each are different. Three main types of medication are commonly used. These are levodopa, dopamine agonists and monoamine oxidase-B inhibitors. Most people with Parkinson's disease will eventually need to have levodopa, which may be taken at the same time as other medicines to boost its effects.

Each medicine is prescribed to suit the individual needs of the person taking it. Factors that can influence which medicine is prescribed include:

  • your age
  • the severity of your symptoms
  • how well you respond to treatment
  • whether you experience any side effects

When people do not take their medication on time, or stop taking it completely, they can become very ill. If you have to go into hospital, tell the hospital staff about your medication. If you have a stomach bug or are vomiting, tell your doctor as this may affect the levels of medicine in your body.

Your specialist can explain your medication options and discuss which may be best for you. Regular reviews will be required as the disease progresses and your needs change.

Levodopa

Levodopa is absorbed by the nerve cells in your brain and turned into dopamine. It is usually taken as a tablet or liquid. Levodopa is often combined with other medication, such as benserazide or carbidopa. These drugs stop the levodopa being broken down in the gut before it has a chance to get to the brain. They also reduce the side effects of levodopa, which include nausea, vomiting, tiredness and dizziness.

If you are prescribed levodopa, the initial dose will usually be very small and will be gradually increased until it takes effect. At first, levodopa can cause a dramatic improvement in the symptoms. However, it usually becomes less effective over time. This happens because as more nerve cells in the brain die, there are fewer of them to absorb the medicine. This means that the dose may need to be increased from time to time.

Long-term use of levodopa is linked to certain side effects. These include "on-off" effects, where you can suddenly switch between being able to move (on) and being immobile (off), and muscle problems that cause uncontrollable, jerky muscle movements (dyskinesias).

Duodopa

This is a specialist treatment used for patients with severe on-off swings. A tube is inserted through the abdominal wall into the gut. Levodopa gel is continuously fed through the tube by a mini-pump, which is worn on your belt. Only a few centres in the UK offer this treatment, which needs the support of your primary care trust to finance it.

Dopamine agonists

Dopamine agonists act as a substitute for dopamine in the brain and have a similar effect to levodopa. They are used to treat early Parkinson’s disease as they are less likely to cause muscle problems (dyskinesias) than levodopa. They are often taken as a tablet, but can also be injected into a vein (intravenously). Sometimes, dopamine agonists are taken at the same time as levodopa. This allows lower doses of levodopa to be used.

Possible side effects of dopamine agonists include nausea, vomiting, tiredness and dizziness. Dopamine agonists can cause episodes of confusion or hallucinations, so they need to be used with caution, particularly in elderly patients who are more susceptible.

For some people, dopamine agonists, especially at high doses, have been linked to the development of compulsive behaviours, including pathological gambling, increased libido and hypersexuality. These are very complex disorders. Talk to your healthcare specialist if you think you may be experiencing them. As the person themselves may not realise the problem, it is key that carers and family members note any abnormal behaviour and discuss it with the appropriate professional at the earliest opportunity.

If you are prescribed a course of dopamine agonists, the initial dose will usually be very small to prevent nausea. The dosage is gradually increased over a few weeks. If nausea becomes a problem, your doctor may prescribe anti-sickness medication, such as domperidone. You may need blood tests and a chest X-ray before some types of dopamine agonist are prescribed.

Monoamine oxidase-B inhibitors

Monoamine oxidase-B (MAO-B) inhibitors, including selegiline and rasagiline, are another alternative to levodopa for treating early Parkinson's disease. They block the effects of a chemical called monoamine oxidase-B in the brain. This chemical destroys dopamine. By blocking it, MAO-B inhibitors allow dopamine to last longer in the brain.

Both selegiline and rasagiline can improve the symptoms of Parkinson’s disease, although their effects are small compared with levodopa. They can be used alongside levodopa or dopamine agonists.

MAO-B inhibitors can cause a wide range of side effects, including nausea, headache and abdominal pain, though not everyone will experience them.

Catechol-O-methyltransferase inhibitors

Catechol-O-methyltransferase (COMT) inhibitors are prescribed for people in later stages of Parkinson’s disease. They prevent levodopa from being broken down by the enzyme COMT.

Side effects of COMT inhibitors include nausea, vomiting, diarrhoea and abdominal pain. If the COMT inhibitor tolcapone is used, you will need liver tests every two weeks.

Surgery

Most people with Parkinson’s disease are treated with medication. However, surgery is sometimes used to treat long term patients.

Deep brain stimulation

Deep brain stimulation is a surgical technique sometimes used to treat Parkinson's disease. A pulse generator (similar to a heart pacemaker) is inserted in your chest wall and a fine wire placed under the skin and attached to your brain. A tiny electric current is produced from the pulse generator, which runs through the wire and stimulates the part of your brain affected by Parkinson's disease.

Although surgery does not cure Parkinson's disease, it can ease the symptoms for some.

Clinical trials

Much progress has been made in the treatment of Parkinson’s disease due to clinical trials, in which new treatments and treatment combinations are compared with standard ones.

If you are asked to take part in a trial, you will be given an information sheet about the trial and asked to sign a consent form. You can refuse to take part or withdraw from a clinical trial without it affecting your care.

Complementary therapies

Some people with Parkinson’s disease find complementary therapies help them feel better. Many complementary treatments and therapies claim to ease the symptoms of Parkinson’s disease. However, there is no clinical evidence they are effective.

Many people think complementary treatments have no harmful effects. However, they can be harmful, and as such it is a bad idea to use them instead of the medicines prescribed by your doctor. If you decide to use an alternative treatment along with your prescribed medicines, it is important to let your doctor know.

Treatment

Your treatment plan

You may not need any treatment during the early stages of Parkinson's disease as symptoms are usually mild. However, you may need regular appointments with your specialist so that your condition can be monitored.

At the moment, there is no cure for Parkinson's disease. However, numerous treatments are available to help control your symptoms and maintain your quality of life. These may be supportive therapies that help you cope with everyday life or medication to control your symptoms. For some people with a particular pattern of symptoms, surgery may be an option.

You should agree a care plan with your healthcare professionals and your family or carers, and this should be reviewed regularly.

The care plan should address:

  • what are your currents needs and how can these be met
  • what are likely to be your needs in the future
  • is there anything that can be done to make your day to day life easier

Your care team

As Parkinson’s disease can often be a very complex condition to treat the treatment you receive will be provided by a team of different professionals working together. This is known as a multi-disciplinary team or MDT.

Members of your care team may include:

  • a neurologist (a specialist in treating conditions that affect the nervous system)
  • a physiotherapist (helps people improve their co-ordination and range of movement)
  • a speech and language therapist
  • an occupational therapist (helps people improve the skills they need for daily activities, such as washing or dressing)
  • an incontinence adviser
  • a psychologist
  • a social worker
  • a dietician
  • a specialist neurology nurse (who will usually be your first point of contact with the rest of the team)

Medication

Medicines may be used to treat the symptoms of Parkinson’s disease. Not all medicines are useful for everyone and the short- and long-term effects of each are different. Three main types of medication are commonly used.

These are levodopa, dopamine agonists and monoamine oxidase-B inhibitors.

Most people with Parkinson's disease will eventually need to have levodopa, which may be taken at the same time as other medicines to boost its effects.

Each medicine is prescribed to suit the individual needs of the person with Parkinson’s disease.

Things that can influence which medicine is prescribed include:

  • your age
  • the severity of your symptoms
  • how well you respond to treatment
  • whether you experience any side effects

When people do not take their medication on time, or stop taking it completely, they can become very ill. If you have to go into hospital, tell the hospital staff about your medication. If you have a stomach bug or are being sick, tell your doctor as this may affect the levels of medicine in your body.

Your specialist can explain your medication options and discuss which may be best for you.

Regular reviews will be required as the disease progresses and your needs change.

Levodopa

Levodopa is absorbed by the nerve cells in your brain and turned into dopamine. It is usually taken as a tablet or liquid. Levodopa is always combined with other medication, either benserazide or carbidopa.

These medications stop the levodopa from being broken down in the gut before it has a chance to get to the brain.

They also reduce the initial side effects of levodopa, which include:

  • being sick
  • dizziness
  • feeling sleepy during the day

If you are prescribed levodopa, the initial dose will usually be very small. The dose will be gradually increased until it takes effect. At first, levodopa can cause a dramatic improvement in the symptoms of Parkinson's disease. However, can become less effective over time.

This happens because the body gets used to metabolising (breaking down) levodopa so many patients will need to take their medication more frequently

Long-term use of levodopa is linked to certain side effects. These include "on-off" effects, where you can suddenly switch between being able to move (on) and to having great difficulties with movement (off), and muscle problems that cause uncontrollable, jerky muscle movements (dyskinesias). Dopamine agonists too can cause or aggravate dyskinesia.

Duodopa

This is a specialist treatment used for patients with severe on-off swings. A tube is inserted through the abdominal wall into the gut. Levodopa gel is continuously fed through the tube by a mini-pump, which is worn on your belt.

Dopamine agonists

Dopamine agonists act as a substitute for dopamine in the brain and have a similar effect to levodopa. They are used to treat early Parkinson’s disease as they are less likely to cause muscle problems (dyskinesias) than levodopa. They are often taken as a tablet, but can also be injected into a vein (intravenously). Sometimes, dopamine agonists are taken at the same time as levodopa. This allows lower doses of levodopa to be used.

Possible side effects of dopamine agonists include feeling sick and tiredness.
It can also cause episodes of confusion or hallucinations, so they need to be used with caution, particularly in elderly patients who are more susceptible to these symptoms.

If you are prescribed a course of dopamine agonists, the initial dose will usually be very small to prevent you feeling sick. The dosage is gradually increased over a few weeks. If nausea becomes a problem, your doctor may prescribe anti-sickness medication, such as domperidone. You may need blood tests and a chest X-ray before some types of dopamine agonist are prescribed.

Impulsive control disorders and punding

For some people, dopamine agonists, especially at high doses, can trigger a condition called impulsive control disorders (ICD). The same is true to a lesser extent of levodopa.

ICDs cause a person to become unable to resist a temptation or impulse, usually harmful, which causes a person to act out of character and take part in compulsive activities such as pathological gambling or binge eating.

It is estimated that around 1 in 5 people taking a dopamine agonist and 1 in 14 people taking levodopa will develop an ICD.

Some people taking dopamine agonists will also engage in obsessive-compulsive behaviours, such as collecting and hoarding objects that have no real value and going on long walks that have no actual destination (aimless wandering).

This kind of OCD-type behaviour is known as.punding.

Both ICDs and.punding are complex disorders so you should talk to your healthcare specialist if you think that you may be experiencing them.

As the person themselves may not realise that there is a problem, it is key that carers and family members note any abnormal behaviour and discuss it with the appropriate professional at the earliest possible stage.

Monoamine oxidase-B inhibitors

Monoamine oxidase-B (MAO-B) inhibitors, including selegiline and rasagiline, are another alternative to levodopa for treating early Parkinson's disease. They block the effects of a chemical called monoamine oxidase-B in the brain. This chemical destroys dopamine. By blocking it, MAO-
B inhibitors allow dopamine to last longer in the brain.

Both selegiline and rasagiline can improve the symptoms of Parkinson’s disease, although their effects are small compared with levodopa. They can be used alongside levodopa or dopamine agonists.

MAO-B inhibitors can cause a wide range of side effects, including feeling sick, headache and abdominal pain but these are unusual.

Catechol-O-methyltransferase inhibitors

Catechol-O-methyltransferase (COMT) inhibitors are prescribed for people in later stages of Parkinson’s disease. They prevent levodopa from being broken down by the enzyme COMT.

Possible side effects of COMT inhibitors include feeling sick, being sick, diarrhoea and abdominal pain.

If the COMT inhibitor tolcapone is used, you will need liver tests every two weeks.

Treating non-motor symptoms

There are a wide range of treatment options for many of the non-motor symptoms of Parkinson’s disease such as depression and dementia. These are outlined below.

Depression

Exercise has been proven to help depression, and is one of the main treatments if you have mild depression.

More severe depression often required a combination of antidepressant medication and a type of talking therapy known as cognitive behavioural therapy (CBT)

The selective serotonin reuptake inhibitors (SRRIs) type of antidepressant is usually recommended as they tend to cause less side effects than other types of antidepressants.

In rare cases taking a SSRI can make the symptoms of Parkinson’s disease worse. If this does occur contact the doctor in charge of your care as your medication will need to be changed.

CBT concentrates mostly on how you can change the way you think, feel and behave in the present. It teaches you how to overcome negative thoughts, for example being active to challenge feelings hopeless. CBT is available on the NHS for people with depression or any other mental health problem that it has been shown to help.

You normally have a short course of sessions, usually six to eight sessions, over 10-12 weeks on a one-to-one basis with a counsellor trained in CBT. In some cases, you may be offered group CBT.

Read more about treating depression.

Anxiety

If your related to having ‘on-off’ episodes, then reviewing your medication is the first step. You may need to alter the timings of your medication, or add in other drugs.

Taking a number of practical steps to reduce your stress levels can also help, such as:

  • taking regular exercise
  • avoid stimulants such as coffee and tea
  • taking part in activities that can help you relax such as yoga or Tai Chi

If you are having significant feelings of anxiety and /or panic attacks you may require a combination of CBT and antidepressants.

Read more about treating anxiety.

Dementia

If you (or someone in your care) begins to develop the symptoms of dementia then usually the first step is to review the medication that is being used to treat the Parkinson’s disease.

This is because some of the medications used can make the symptoms of dementia worse. or reducing the dosage of these medications may aggravate motor symptom. So it is often a case of finding a ‘trade-off’ between controlling the motor symptoms of Parkinson’s disease as well as treating the symptoms of dementia.

A medication called rivastigmine has shown to be moderately effective in improving thinking skills (cognitive ability) and reducing incidence of abnormal behaviour such as sudden outbreaks of anger.

Common side effects of rivastigmine include dizziness, sickness and diarrhoea.

Medications designed to help treat psychosis associated with dementia (antipsychotics) can make the motor symptoms of Parkinson’s disease worse. So they tend to be only used if a person has severe psychosis and is exhibiting extremely challenging and troublesome behaviour.

There are also a number of psychological treatments for Parkinson’s disease such as:

  • cognitive stimulation and reality orientation therapy – which involves taking part in activities and exercises that are designed to improve your memory, problem-solving skills and language ability
  • behavioural therapy – which takes a problem-solving approach to try and address troublesome behaviour such as aggression

Read more about treating dementia.

Sleep problems

Sleep problems (insomnia) can sometimes be the result of your medication either keeping you awake or wearing off during the night. So it may be possible to help improve your sleep by changing the medication, adjusting the dosage and /or changing the time you take the medication.

Other methods you can use to help improve your sleep include:

  • try to stay physically active during the day
  • avoid stimulants such as tea and coffee in the evening
  • try to relax before bedtime, such as taking a warm bath

Depression can also contribute to insomnia so treating any underlying depression may help improve the quality of your sleep.

However, it can be challenging to control insomnia associated with Parkinson’s disease and you may find you have difficult with insomnia as the condition progresses.

Read more about treating insomnia.

Autonomic dysfunction

Treatment options for symptoms arising from problems with your autonomic nervous system (autonomic dysfunction) are outline below

Urinary incontinence

Urinary incontinence (the unintentional passing of urine) can sometimes be improved by reducing your fluid intake in the evening.

Exercises designed to strengthen your bladder muscles (bladder training) can also be useful. You may find it useful to install a commode in your bedroom if you keep waking up to go to the toilet. There are also hand-held urinals available for men.

There are some types of medication that can help relax the bladder which reduces the need to urinate.

Read more about treating urinary incontinence.

Constipation

Drinking plenty of fluids and eating a high-fibre diet can often help improve the symptoms of constipation.

However some people with Parkinson’s disease are required to take a type of medication known as a laxative, that helps soften stools making them easier to pass.

Some laxatives can be dangerous if taken on a long-term basis so you should ask your care team for advice if you are having persistent problems with your digestion.

Read more about treating constipation.

Sexual problems

If you are having problems obtaining and /or sustaining an erection (erectile dysfunction) then there are a number of medications that increase the supply of blood to the penis leading to an erection.

Orthostatic hypotension

A sudden drop in blood pressure when moving from a sitting or lying position to a standing one (orthostatic hypotension) can often be prevented by taking some preventative steps, such as:

  • avoid sitting down for long periods of time; especially in hot environments
  • take your time moving to a standing position; never rush to get up to answer a door, telephone or similar
  • try standing still for a few seconds until you are sure you are feeling steady
  • increasing the amount of salt in your diet can sometimes help – your doctor should be able to advise you
  • avoiding caffeine in the evenings
  • eating frequent, small meals, rather than large ones
  • avoiding alcohol
  • drinking plenty of water, at least 3 pints a day and drink a pint before you get up in the morning

Excessive sweating

Excessive sweating (hyperhidrosis) can often be relieved by adjusting your medication. If the problem persists then treatment options include:

  • prescription antiperspirant – which can help dry up sweat glands
  • using surgery to remove some of the nerve tissue that is connected to the affected sweat glands

Read more about treating excessive sweating.

Swallowing and saliva problems

Difficulties swallowing (dysphagia) and excessive saliva production (drooling) will usually require a referral to a speech and language therapist (SLT).

Your SLT can teach you how changes to your body’s posture can make swallowing easier.

You may also be advised to make changes to your diet to softened foods and thickened fluids.

In very severe cases of dysphagia a feeding tube may be required.

Read more about treating dysphagia.

Excessive saliva production is the result of the fact that the natural swallowing reflex slows down in people with Parkinson’s disease. So the body effectively ‘forgets’ to swallow at regular intervals leading to a build-up of salvia in the mouth, which can then drool out when a person is distracted.

Your SLT can teach you a number of exercises that can help prevent drooling as well as techniques that encourage you to swallow more frequently such as chewing gum. There are devices that can remind you to swallow frequently.

In more severe cases medication, and in some cases surgery, may be required. Your care team will be able to advise you.

Supportive therapies

There are several therapies that can make living with Parkinson's disease easier and can help you deal with your symptoms on a day-to-day basis.

Physiotherapy

A physiotherapist can work with you to relieve muscle stiffness and joint pain through movement (manipulation) and exercise. The physiotherapist aims to make moving easier and improve your walking and flexibility.

They also try to improve your fitness levels and your ability to manage things for yourself.

Read more about physiotherapy.

Occupational therapy

An occupational therapist can identify areas of difficulty in your everyday life, for example dressing yourself or getting to the local shops. They can help you to work out practical solutions and ensure that your home is safe and properly set up for you. This will help you carry on as normal for as long as possible.

Read more about occupational therapy.

Speech and language therapy

About half the people with Parkinson's disease have problems communicating, such as slurred speech or poor body language. So a SLT can also help you improve your speech and use of language.

They may use vocal exercises or equipment to help you make yourself understood.

Diet advice

Around 50% of people with Parkinson’s disease will experience some unintentional weight loss. Your doctor may refer you to a dietitian (a healthcare professional trained to give diet advice) if you may benefit from changing your diet.

A dietician can also provide additional advice if you are experiencing constipation and /or orthostatic hypotension.

Surgery

Most people with Parkinson’s disease are treated with medication. However, surgery is sometimes used to treat people who have had Parkinson's disease for a long time. This surgery is available in specialist centres around the UK. However, it is not suitable for everyone and your specialist will discuss with you the risks and benefits of this type of treatment.

Deep brain stimulation

Deep brain stimulation is a surgical technique that is sometimes used to treat Parkinson's disease. A pulse generator (similar to a heart pacemaker) is inserted under the skin of your chest wall and a fine wire runs under the skin and is attached to electrodes in your brain. A tiny electric current is produced from the pulse generator, which runs through the wire and stimulates the part of your brain that is affected by Parkinson's disease.

Although surgery does not cure Parkinson's disease, it can ease the symptoms for some people.

Clinical trials

Much progress has been made in the treatment of Parkinson’s disease due to clinical trials, in which new treatments and treatment combinations are compared with standard ones.

If you are asked to take part in a trial, you will be given an information sheet about the trial. If you want to take part, you will be asked to sign a consent form. You can refuse to take part or withdraw from a clinical trial without it affecting your care.

Living with parkinsons disease

Treating other symptoms

As well as the symptoms caused by the condition itself, people with Parkinson’s disease may also experience other symptoms which need to be treated.

Depression

People with Parkinson’s disease often have depression. This is caused by the changes in the levels of chemicals in the brain. There are many different treatment options for depression. Discuss which is the best for you with your healthcare team.

Psychosis

Psychosis is a mental condition where somebody is unable to distinguish between reality and their imagination. Sometimes, medication you are taking to treat the symptoms of Parkinson’s disease can cause psychosis. As with all medication for Parkinson’s disease, do not stop taking it suddenly. If you have any concerns, talk to your healthcare team.

Dementia

One in five people with Parkinson’s disease will develop dementia as they get older. Any treatment of dementia should take into account your Parkinson’s disease. Your healthcare team can discuss this with you.

Sleep problems

Many people with Parkinson’s disease have problems with sleeping. You may be tired in the daytime, have difficulty moving at night or have problems with restless legs syndrome. If you have problems with sleep, talk to your healthcare team. They may suggest a change to your medicine(s) or there may be practical changes that can help.

Falls

Loss of stability in later stages of Parkinson’s disease can lead to falls. There are many ways to prevent falls. Your physiotherapist and occupational therapist may be able to help with this.

Relationships and support

Coming to terms with a long-term condition such as Parkinson’s disease can put a strain on you, your family and friends. It can be difficult to talk to people about your condition, even if they're close to you.

Dealing with the deterioration of symptoms, such as increasing difficulty with movement and tremor, can make people with Parkinson’s disease feel very frustrated and depressed. Their spouse, partner or carer will inevitably feel anxious or frustrated too.

Be open about how you feel and let your family and friends know what they can do to help. Do not feel shy about telling them you need some time to yourself, if that is what you want.

Support

If you have questions, your doctor or Parkinson’s disease specialist nurse may be able to reassure you. You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your doctor's surgery will have details of these.

Some people find it helpful to talk to others with Parkinson's disease, either at a local support group or in an internet chatroom.

Money and financial support

If you have to stop work or work part-time because of Parkinson’s disease, you may find it hard to cope financially. You may be entitled to financial support.

Driving

If you have been diagnosed with Parkinson’s disease, you must inform your driving licence issuer and your insurance company.

You will not necessarily have to stop driving. Your driving licence issuer will decide whether you are fit to drive.

Advanced Parkinson's disease

As Parkinson’s disease progresses, you will be invited to discuss with your healthcare team the care you want as you near the end of your life.

What is palliative care?

Palliative care is the support and care of symptoms when no cure for the disease is possible, usually when the person is dying. Your doctor or nurse may suggest you see a specialist or nurse in palliative care, or a counsellor.

A palliative care team will focus on controlling your symptoms, keeping you as comfortable and pain-free as possible, as well as offering physical, psychological, spiritual and social support for you and your family.

Ernie's story

Ernie, 69, was diagnosed with Parkinson’s four years ago. He tells us his story.

“Looking back, I was experiencing the symptoms of Parkinson’s for at least two years before my diagnosis. I had ‘frozen’ a couple of times - literally stopped moving - while walking and I seemed to be having problems with my facial muscles, which were causing me to dribble badly.

“I had suffered for years with a painful right hip due to arthritis in my adolescence. This I thought, now I know incorrectly, explained the ‘freezing’ incidents. After carrying out a few basic tests, my doctor concluded there was nothing wrong with my facial muscles and that the root cause of my dribbling could be excess saliva caused by the type of filling used by my dentist.

“Early in 2005 I had a full right hip replacement. Though initially I seemed to recover well, it soon became clear my progress was falling behind the group of patients I’d been admitted with. They soon went home, while my mobility wasn’t improving.

“I was transferred to a rehabilitation centre, where one of the doctors suspected I had Parkinson’s simply by looking at my expressionless face. I was referred to a consultant, who confirmed Parkinson’s. He was accompanied by a Parkinson’s disease nurse specialist (PDNS), who gave me some information from the Parkinson’s Disease Society about what the condition is.

“At the moment I’m in relatively good health. My joints, particularly my ankles, tend to be very stiff in the mornings and my movement is slow. I try and exercise as much as I can, which seems to help with my mobility. I believe it’s very important to stay as active as possible when you have Parkinson’s, so I try to go to the gym three times a week.

“Fortunately I have only a very slight tremor in my left hand, which in itself is not a problem. Currently, the biggest problem I have is getting up from a chair. Also, my handwriting is so small that even I can’t read it, so I just tell people I can no longer write! Recently, I’ve been experiencing problems with my speech, which is very frustrating as often people can’t hear me very well.

“I see my consultant every three months and the PDNS is usually there too. She gives me the information I need to manage my symptoms effectively so I can do as much as I can and live life to the full, albeit in the slow lane.

“I’m also secretary of my local Parkinson’s Disease Society support group, which was set up eight months after my diagnosis. Being part of the group is extremely helpful as there are people I can talk to who are going through the same things.

“Living with this condition can be incredibly difficult, but life doesn’t end with a Parkinson’s diagnosis. For me, everything just takes a bit longer.”

Karen's story

Parkinson’s disease is usually considered an older person's illness, but Karen Rose was diagnosed with it when she was just 34. She talks about the impact it's had on her life over the past 10 years.

“I was 34 when I first noticed the symptoms of Parkinson's. At the time, my dad noticed that I wasn't walking properly and that I wasn't swinging my right arm. And at work I was typing the wrong keys when I was using the computer.

“A year or so later I had a car accident and started to develop a tremor. Over the following year I realised this wasn't right. Every time I was anxious or upset, the tremor would start.

“My doctor didn't know what was wrong so he sent me to a neurologist, who gave me a tablet to try. It worked and my symptoms improved, confirming I had Parkinson’s.

"I went back to see the consultant and he gave me the medication that I have to take every day and for the rest of my life.

“People consider Parkinson's to be an older person's disease. Every time I mention I have it, people always say, 'You're not old enough, you look fine'.

"When my medication's working, I do look fine, but they don't see the times when the medication's worn off and I'm struggling to move and do everything that everybody takes for granted.

“I feel stiff and slow in the mornings and am hardly able to move one foot in front of the other. The medication helps to get me going. I take it throughout the day to stop the symptoms. Stairs aren’t a problem as I can run up those easily. It's walking I have the problem with.

“I become worse as the tablets wear off. The twitching I suffer from is a side effect of the medication, but I need to take it regularly. If I don't, I slow down, get stiff and I'm unable to do what I want to. So it’s essential to take your medication on time. I have a pill timer, which reminds me when I'm due to take a tablet.

“My family are really supportive. My husband and children have to do quite a lot of housework for me, but they don't mind at all.

“I was lucky at work. My boss is supportive and made sure I could do the jobs that suited me at the time. If I was having a bad day, my boss let me do a job I could manage and never put any pressure on.

“When I was first diagnosed I didn't know anybody my age who had Parkinson's, only very old people. Then a nurse specialist at my local hospital put me in touch with the Bristol branch of the Parkinson's Disease Society (PDS).

"The people at PDS supported me. I joined their committee so I could also help other people with young-onset Parkinson's.

“It's important to talk when you find out you have Parkinson's. Ask your doctor if they know of a nearby support group or contact the PDS. They have contact numbers of people you can talk to on their website.

“I don't think you ever accept that you have Parkinson's disease, but you do need to learn to live with it. Don't let it live your life for you. Do what you can, when you can, and stay positive because this will always help.”

Living with parkinsons disease

A diagnosis of Parkinson’s disease is life changing. You will need long-term treatment to control your symptoms and you may have to adapt the way you do simple daily tasks.

Self-care

Self-care is an integral part of daily life. It means that you take responsibility for your own health and wellbeing with support from the people involved in your care. Self-care includes the things you do each day to stay fit, maintain good physical and mental health, prevent illness or accidents, and effectively deal with minor ailments and long-term conditions.

People living with long-term conditions can benefit enormously if they receive support for self-care. They can live longer, have less pain, anxiety, depression and fatigue, have a better quality of life and be more active and independent.

Regular reviews

Because Parkinson’s disease is a long-term condition, you will be in regular contact with your healthcare team. A good relationship with the team will allow you to easily discuss your symptoms or concerns. The more the team knows, the more they can help you.

Keeping well

Everyone with a long-term condition such as Parkinson’s disease is encouraged to get a flu jab each autumn to protect against flu (influenza). They are also recommended to get an anti-pneumoccocal vaccination, which protects against a serious chest infection called pneumococcal pneumonia.

Read more about the flu and pneumoccocal vaccinations.

Healthy eating and exercise

Regular exercise and a healthy diet are recommended for everyone, not just people with Parkinson’s disease.

They can help prevent many conditions, including heart disease and many forms of cancer. Eat a balanced diet containing all the food groups to give your body the nutrition it needs.

Exercising regularly can help relieve stress and reduce fatigue.

Relationships with others

Coming to terms with a long-term condition such as Parkinson’s disease can put a strain on you, your family and your friends. It can be difficult to talk to people about your condition, even if they're close to you.

Dealing with the deterioration of symptoms, such as increasing difficulty with movement and tremor, can make people with Parkinson’s disease feel very frustrated and depressed. Their spouse, partner or carer will inevitably feel anxious or frustrated too.

Be open about how you feel and let your family and friends know what they can do to help. Do not feel shy about telling them that you need some time to yourself, if that is what you want.

Support

If you have questions, your doctor or Parkinson’s disease specialist nurse may be able to reassure you. You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline.

Some people find it helpful to talk to other people with Parkinson's disease, either at a local support group or in an internet chatroom.

Money and financial support

If you have to stop work or work part-time because of Parkinson’s disease, you may find it hard to cope financially. You may be entitled to financial support.

Driving

If you have been diagnosed with Parkinson’s disease, you must inform the driving licence issuer and your insurance company.

You will not necessarily have to stop driving. You will be asked to complete a form providing more information about your condition as well as details of your doctors and specialists. Your driving licence issuer will use this to decide whether you are fit to drive.

Advanced Parkinson's disease

As Parkinson’s disease progresses, you will be invited to discuss with your healthcare team the care you want as you near the end of your life.

What is palliative care?

Palliative care is the support and care of symptoms when no cure for the disease is possible, usually when the person is dying. Your doctor or nurse may suggest you see a specialist or nurse in palliative care, or a counsellor.

A palliative care team will focus on controlling your symptoms, keeping you as comfortable and as pain-free as possible, as well as offering physical, psychological, spiritual and social support for you and your family.

Content supplied by NHS Choices