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Parkinson’s disease

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Parkinson’s disease



Introduction 
 





Parkinson's disease


 

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

The three main symptoms of Parkinson’s disease are:


tremor (involuntary shaking of particular parts of the body)

slow movement

stiff and inflexible muscles


A person with Parkinson’s disease can also experience a wide range of other physical and psychological symptoms, including depression,constipation, problems sleeping (insomnia), loss of sense of smell (anosmia) and memory problems.

Seeking medical advice

See your GP if you are concerned that you may have symptoms of Parkinson's disease.

Your GP will ask about the problems you are experiencing and may refer you to a specialist for further tests.

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 a 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.

Who is affected

It's thought that around one in 500 people are affected by Parkinson’s disease, which means there are an estimated 127,000 people in the UK with the condition.

Most people with Parkinson's start to develop symptoms when they are over 50, although around one in 20 people with the condition first experience symptoms when they are under 40.

Men are more likely to get Parkinson’s disease than women.

How Parkinson’s disease is treated

There is currently no cure for Parkinson’s disease, although treatments are available to help reduce the main symptoms and maintain your quality of life for as long as possible.

These include supportive treatments (such as physiotherapy andoccupational therapy), medication and, in some cases, surgery.

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.

Outlook

As the condition progresses, the symptoms of Parkinson's disease can get worse and it can become increasingly difficult to carry out everyday activities without assistance.

Some people respond well to treatment and only experience mild to moderate disability, whereas others eventually become severely disabled.

Parkinson's disease does not directly cause people to die, but the condition can place great strain on the body and can make some people more vulnerable to serious and life-threatening infections.

However, with advances in treatment, most people with Parkinson’s disease now have a normal or near-normal life expectancy.

Symptoms of Parkinson's disease 

The symptoms of Parkinson's disease usually develop gradually and are mild at first.

There are many different symptoms associated with Parkinson's disease, but the order in which these develop and their severity is different for each individual with the condition.

Some of the more common symptoms are described below, although it is unlikely that a person with Parkinson's disease would experience all or most of these.

Main symptoms

The three main symptoms of Parkinson's disease affect physical movement:


tremor – uncontrollable shaking, which usually begins in the hand or arm and is more likely to occur when the limb is at rest

slowness of movement (bradykinesia) – where physical movements are much slower than normal, which can make everyday tasks difficult and can result in a distinctive slow, shuffling walk with very small steps

muscles stiffness (rigidity) – stiffness and tension in the muscles, which can make it difficult to move around and make facial expressions and can result in painful muscle cramps (dystonia)


These main symptoms are sometimes referred to by doctors as 'Parkinsonism'.

Other symptoms

Parkinson's disease can also cause a range of other physical and mental symptoms.

Physical symptoms


balance problems, which can make someone with the condition more likely to have a fall and injure themselves

loss of sense of smell (anosmia), which sometimes occurs several years before other symptoms develop

nerve pain, which can cause unpleasant sensations such as burning, coldness or numbness

problems with urination, such as having to get up frequently during the night to urinate or urinary incontinence (the unintentional passing of urine)

constipation

erectile dysfunction in men – an inability to obtain or sustain an erection

sexual dysfunction in women – difficulty becoming sexually aroused and achieving an orgasm

dizziness, blurred vision or fainting when moving froma sitting or lying position to a standing one, caused by a sudden drop in blood pressure

excessive sweating (hyperhidrosis)

swallowing difficulties (dysphagia), which can lead tomalnutrition and dehydration

excessive production of saliva (drooling)


Mental symptoms


depression and anxiety

problems sleeping (insomnia), which can result in excessive sleepiness during the day

mild cognitive impairment – slight memory problems and problems with activities that require planning and organisation

dementia – a group of symptoms including more severe memory problems, personality changes, visual hallucinations (seeing things that are not there) and delusions (believing things that are not true)


When to seek medical advice

See your GP if you are concerned that you may have symptoms of Parkinson's disease.

Your GP will ask about your symptoms and your medical history to help them decide whether it's necessary to refer you to a specialist for further tests.

Causes of Parkinson's disease 

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 parts of the brain and nervous system that help control and co-ordinate body movements.

If these nerve cells become damaged, the amount of dopamine in the brain is reduced. This means that the part of the brain controlling movement cannot work as well as normal, causing movements to become slow and abnormal.

The loss of nerve cells is a slow process. The symptoms of Parkinson's disease usually only start to develop when around 80% of the nerve cells in the substantia nigra have been lost.

What causes the loss of nerve cells?

It is not known why the loss of nerve cells associated with Parkinson's disease occurs, although research is ongoing to identify potential causes.

Currently, it is believed that a combination of genetic changes and environmental factors may be responsible for the condition.

Genetics

Several genetic changes (mutations) have been identified as increasing a person's risk of developing Parkinson's disease, although exactly how these make some people more susceptible to the condition is unclear.

Parkinson's disease can run in families as a result of faulty genes being passed to a child by their parents, however, inheriting the disease in this way is rare.

Environmental factors

Some researchers also feel that environmental factors may increase a person's risk of developing Parkinson's disease.

It has been suggested that pesticides and herbicides used in farming and traffic or industrial pollution may contribute to the condition.

However, the evidence linking environmental factors to Parkinson's disease is inconclusive.

Other causes of Parkinsonism

'Parkinsonism' is the umbrella term used to describe the symptoms of tremors, muscle rigidity and slowness of movement.

Parkinson's disease is the most common type of Parkinsonism, but there are also some rarer types where a specific cause can be identified.

These include Parkinsonism caused by:


medication ('drug-induced Parkinsonism') – wheresymptoms develop after taking certain medications, such as some types of antipsychotic medication, and usually improve once the medication is stopped

other progressive brain conditions, such as progressive supranuclear palsy, multiple systems atrophy and corticobasal degeneration

cerebral infarction – where a severe stroke causes several parts of the brain to die


Diagnosing Parkinson's disease 

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 some simple exercises.

Your GP will talk to you about the problems you are experiencing and they may ask you to perform some simple mental or physical tasks (such as moving or walking around) to help with the diagnosis.

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

Referral to a specialist

If your GP suspects Parkinson's disease, you will be referred to a specialist. This will usually be either a neurologist (specialist in conditions affecting the brain and nervous system) or a geriatrician (a specialist in problems affecting elderly people).

If your GP 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, 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 problems with movement.

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)


If your symptoms rapidly improve after taking a medication called levodopa, it is highly likely you have Parkinson’s disease. However, most specialists no longer perform this type of 'diagnostic challenge'.

Special brain scans, such as a single photon emission computed tomography (SPECT) scan, may also be carried out in some cases to try to rule out other causes of your symptoms.

Receiving the diagnosis

Being told you have Parkinson’s disease can be emotionally distressing, 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.

You may find it useful to contact Parkinson’s UK, the Parkinson’s support and research charity.

Their contact details are:


free helpline on 0808 800 0303
(Monday-Friday: 9am-8pm, Saturday: 10am-2pm)

email: hello@parkinsons.org.uk


Parkinson's UK brings people with Parkinson's, their carers and families together through their network of local groups, online resources and confidential helpline. The Parkinson's UK website also provides information and support on every aspect of living with Parkinson's.

Treating Parkinson's disease 

There is currently no cure for Parkinson's disease, but treatments are available to help relieve the symptoms and maintain your quality of life.

These include supportive therapies (such as physiotherapy), medication and, for some people, surgery.

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.

A care plan outlining the treatments and help you need now and are likely to need in the future should be agreed with your healthcare team and your family or carers, and this should be reviewed regularly.

Read the National Institute for Health and Care Excellence (NICE) guidelines on Parkinson's disease.

Read on to learn about the different treatments you may be offered. You can also see a summary of the pros and cons of these treatments, which allows you to easily compare your options.

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. There are efforts underway to try and increase the availability of these supportive therapies for Parkinson’s patients in the .

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 maintain your independence for as long as possible.

Speech and language therapy

Many people with Parkinson's disease have swallowing difficulties (dysphagia) and problems their speech. A speech and language therapist can often help you improve these problems by teaching speaking and swallowing exercises, or by providing assistive technology.

Diet advice

For some people with Parkinson's disease, making dietary changes can help improve some symptoms, such as:


increasing the amount of fibre in your diet and making sure you are drinking enough fluid to reduce constipation

increasing the amount of salt in your diet and eating frequent, small meals to avoid problems with low blood pressure (such as dizziness when you stand up quickly)

making changes to your diet to avoid unintentional weight loss


You may see a dietitian (a healthcare professional trained to give diet advice) if your care team thinks you may benefit from changing your diet.

Want to know more?


Parkinson's UK: Therapies and Parkinson's management


 


Medication 

Medication can be used to improve the main symptoms of Parkinson’s disease, such as tremors (uncontrollable shaking) and movement problems.

However, not all the medications available 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

Your specialist can explain your medication options, including the risks associated with each medication, and discuss which may be best for you. Regular reviews will be required as the condition progresses and your needs change.

Levodopa

Most people with Parkinson's disease will eventually need to have a medication called levodopa.

Levodopa is absorbed by the nerve cells in your brain and turned into the chemical dopamine, which is used to transmit messages between the parts of the brain and nerves that control movement. Increasing the levels of dopamine using levodopa usually improves movement problems.

Levodopa is usually taken as a tablet or liquid and is often combined with other medication, such as benserazide or carbidopa. These additional medications stop the levodopa being broken down in the bloodstream before it has a chance to get to the brain. They also reduce the side effects of levodopa, which include feeling sick (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, its effects can be less long-lasting over the following years because, as more nerve cells in the brain are lost, 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 also linked to problems such as uncontrollable, jerky muscle movements (dyskinesias) and 'on-off' effects – where the person suddenly switches between being able to move (on) and being immobile (off).

Duodopa

If you have severe on-off swings, a type of levodopa called duodopa may be used.

This medication comes as a gel that is continuously pumped into your gut through a tube inserted through your abdominal wall (tummy). There is a small external pump attached to the end of the tube, which you wear on your belt.

However, only a few centres in the UK offer this treatment. It needs the support of your local NHS clinical commissioning group (CCG) to finance it.

Dopamine agonists


Dopamine agonists act as a substitute for dopamine in the brain and have a similar but milder effect compared to levodopa. They are used to treat early Parkinson’s disease as they are less likely to cause involuntary movements (dyskinesias) than levodopa.

Dopamine agonists are often taken as a tablet, but a type called apomorphine can be injected under the skin (subcutaneously). Sometimes, dopamine agonists are taken at the same time as levodopa as this allows lower doses of levodopa to be used.

Possible side effects of dopamine agonists include nausea, vomiting, tiredness and dizziness. Dopamine agonists can also cause hallucinations and episodes of confusion, 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 addictive gambling and an excessively increased libido.

Talk to your healthcare specialist if you think you may be experiencing these problems. As the person themselves may not realise the problem, it is key that carers and family members also note any abnormal behaviour and discuss it with an 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 GP may prescribe anti-sickness medication. 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 brain chemical that destroys dopamine (monoamine oxidase-B).

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.

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 tests to check your liver health every two weeks.

Want to know more?


Parkinson's UK: Drug treatments

Parkinson's UK: Parkinson's drugs and compulsive behaviours


Most people with Parkinson’s disease are treated with medication, although a type of surgery called deep brain stimulation is used in some cases.

This surgery is available in specialist centres around the UK, but it is not suitable for everyone. If surgery is being considered, your specialist will discuss the possible risks and benefits with you.

Deep brain stimulation


Deep brain stimulation involves surgically implanting a pulse generator (similar to a heart pacemaker) into your chest wall. This is connected to one or two fine wires placed under the skin and inserted precisely into specific areas 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 affected by Parkinson's disease.

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

Want to know more?


NICE: Deep brain stimulation for Parkinson’s disease (PDF, 37.5kb)

Parkinson's UK: Surgery


Treating additional symptoms 

As well the main symptoms of movement problems, people with Parkinson's disease can experience a wide range of additional symptoms that may need to be treated separately.

These include:


Depression and anxiety, which can be treated with self-care measures (such as exercise), psychological therapy or medication. Read more about treating depression and treating anxiety.

Problems sleeping (insomnia), which can be improved by making changes to your normal bedtime routine. Read more about treating insomnia.

Erectile dysfunction, which can be treated with medication. Read more about treating erectile dysfunction.

Excessive sweating (hyperhidrosis), which can be reduced using a prescription antiperspirant, or with surgery in severe cases. Read more about treating hyperhidrosis.

Swallowing difficulties (dysphagia), which can be improved by eating softened food, or by using a feeding tube in more severe cases. Read more about treating dysphagia.

Excessive drooling, which can be improved with swallowing exercises, or surgery or medication in severe cases.

Urinary incontinence, which can be treated withexercises to strengthen the pelvic floor muscles, medication, or surgery in severe cases. Read more about treating urinary incontinence.

Dementia, which can be treated with cognitive therapies and medication in some cases. Read more about treating dementia.


Clinical trials 

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

All clinical trials in the UK are carefully overseen to ensure that they are worthwhile and safely conducted. Participants in clinical trials sometimes do better overall than those in routine care.

If you are asked if you want 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.

Want to know more?


Search clinical trials for Parkinson's disease

Clinical trials and medical research

Parkinson’s UK: Get involved in research


Complementary and alternative therapies 

Some people with Parkinson’s disease find that 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 that they are effective in controlling the symptoms of Parkinson’s disease.

Most people think that complementary treatments have no harmful effects. However, some can be harmful, and they should not be used instead of the medicines prescribed by your doctor.

Some types of herbal remedies, such as St John’s wort, can interact unpredictably if taken with some types of medication used to treat Parkinson’s disease.

If you are considering using an alternative treatment along with your prescribed medicines, check with your care team first.

Want to know more?


Parkinson's UK: Complementary therapies



 


Living with Parkinson's disease 

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

Everyone's experience of living with Parkinson's is different, but there are lots of issues and challenges that are shared by many people living with the condition.

You may find some of the advice below helpful if you have been diagnosed with the condition.

Keeping well 

It's important to do what you can to stay physically and mentally healthy if you have Parkinson's disease.

Exercise and healthy eating

Regular exercise is particularly important in helping relieve muscle stiffness, improving your mood and relieving stress. There are many good activities you can do to help keep yourself fit, ranging from more active sports like tennis and cycling, to less strenuous activities such as walking, gardening and yoga.

You should also try to eat a balanced diet containing all the food groups to give your body the nutrition it needs to stay healthy.

Vaccinations

Everyone with a long-term condition such as asthma is encouraged to get a yearly flu jab each autumn. Thepneumococcal vaccination is also usually recommended, which is a one-off injection that protects against a serious chest infection called pneumococcal pneumonia.

Want to know more?


Health and fitness

Healthy eating

Parkinson's UK: Exercise and Parkinson's

Parkinson's UK: Diet and Parkinson's


 

Relationships and support 

Being diagnosed 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, may make you feel frustrated and depressed. Spouses, partners or carers 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 any questions about your condition, your GP or Parkinson’s disease specialist nurse may be able to help. You may also find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your GP 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.

Parkinson's UK

 

Parkinson’s UK is the main Parkinson’s support and research charity in the UK. They can offer any support and advice you may need if you are living with Parkinson's disease, and they can let you know about support groups in your local area.

Their contact details are:


free, confidential helpline on 0808 800 0303 (Monday-Friday: 9am-8pm, Saturday: 10am-2pm)

email: hello@parkinsons.org.uk


The Parkinson's UK website also features all the latest news, publications and research updates, as well as an online community where you can share your experiences of living with Parkinson's.

Want to know more?


Parkinson's UK: Relationships and family life

Parkinson's UK: Support for you


Work and finances 

Being diagnosed with Parkinson's doesn't mean you have to stop working. Many people with the condition keep working for years after their diagnosis.

If you do have to stop work or work part-time because of your condition, you may find it hard to cope financially. However, you may be entitled to one or more of the following types of financial support:


If you have a job but cannot work because of your illness, you are entitled to Statutory Sick Pay from your employer.

If you do not have a job and cannot work because of your illness, you may be entitled to Employment and Support Allowance (ESA).

If you are aged 64 and under and need help with personal care or have walking difficulties, you may be eligible for Personal Independence Payment (PIP), which is the new benefit replacing Disability Living Allowance (DLA).

If you are aged 65 or over, you may be able to get Attendance Allowance.

If you are caring for someone with Parkinson’s disease, you may be entitled to Carer’s Allowance.

You may be eligible for other benefits if you have children living at home or if you have a low household income.


Want to know more?


Care and support: Benefits for carers and Benefits for the person you care for

GOV.UK: Benefits

Money Advice Service

Parkinson's UK: Work and money for people with Parkinson's


Driving 

If you have been diagnosed with Parkinson’s disease, you must inform the Driver and Vehicle Licensing Agency (DVLA) 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. The DVLA will use this to decide whether you are fit to drive.

Want to know more?


GOV.UK: driving with a disability or health condition

Parkinson's UK: Driving


Advanced Parkinson's disease 

Advanced Parkinson’s disease is defined as the stage when treatment is unable to consistently control the symptom, or the person has developed disabling dyskinesia (uncontrollable jerky movements).

These problems can still be helped by adjustment or addition of some of the medications used to treat Parkinson’s disease, with supervision by a doctor with a specialist interest in 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. This is known as palliative care.

When there is no cure for an illness, palliative care tries to make the end of a person’s life as comfortable as possible. This is done by attempting to relieve pain and other distressing symptoms while providing psychological, social and spiritual support for you and your family.

Palliative care can be provided at home, in a hospice, in a residential home or in a hospital. You may want to consider talking to your family and care team in advance about where you would like to be treated and what care you wish to receive.

Want to know more?


Accessing palliative care

End of life care

Parkinson's UK: Advanced Parkinson's