Every hour, someone in the UK is diagnosed with Parkinson’s disease, a progressive degenerative neurological condition that causes tremor, stiffness, slow movement and a host of other symptoms.
The disease strikes one in 50 of those aged over 75, yet despite this, and its many celebrity sufferers over the years – most famously Muhammad Ali, Michael J Fox, Neil Diamond and Bob Hoskins – it receives far less attention than many other conditions.
What is Parkinson’s disease?
Parkinson’s disease is a chronic, degenerative neurological disorder that is caused by loss of nerve cells in the brain, although it is not clear what exactly causes this loss of nerve cells. Symptoms usually start when people are over 50, but become increasingly common as people age. Parkinson’s disease affects one in 100 people aged 60 plus, rising to one in 65 by the age of 75.
Parkinson’s disease is caused when there is too little dopamine in the brain. Dopamine is a vital chemical, which plays an important part in how our bodies move. A loss of dopamine causes a large proportion of the symptoms that come with Parkinson’s disease.
Symptoms of Parkinson’s disease
These are the main symptoms of Parkinson’s:
- Tremor – when part of your body shakes uncontrollably
- Rigidity – stiffness in your limbs
- Slowing down of movement
The other physical symptoms of Parkinson’s include:
- Problems with bladder and bowels – constipation, and overactive bladder
- Eye and sight problems - blurred and double vision
- Falling and feeling dizzy
- Fatigue that can happen at any time
- Freezing – suddenly stopping when walking, talking, cleaning your teeth, etc. Feeling as though your feet are stuck to the ground
- Pain – this can be a serious problem for some people, and can take various forms, including aches in the joints, arms and legs, and shooting pains
- Restless legs syndrome – needing to move your legs, and also feelings of burning, tingling, itching etc.
- Skin and sweating problems – skin can feel itchy and sore, sweaty or oily
- Sleeping problems – trouble sleeping at night, and difficulty turning over in bed, sleepwalking, and vivid nightmares
- Speech and communication problems – slurred speech, hoarse voice, spidery handwriting, fewer facial expressions
- Swallowing problems – trouble chewing and swallowing, loss of appetite, weight loss, and food sticking in the throat when eating
As well as physical problems, Parkinson's disease can also cause depression, anxiety and memory problems.
People who have Parkinson’s disease are at higher risk of then having dementia. Around half the people with Parkinson’s disease develop dementia, usually once they are over 70.
How Parkinson’s disease can affect mental health
People with Parkinson’s can also have difficulties with mental health issues.
Anxiety can bring with it feelings of being constantly worried, feeling breathless and having a racing heart. Relaxation techniques can help ease your anxiety, as can counseling, or cognitive behavioural therapy.
Parkinson’s dementia, and Dementia with Lewy Bodies can also affect some people with Parkinson’s, making it hard for them to concentrate, and to carry out normal tasks, such as washing and getting dressed.
Other mental health problems that can be a part of this illness include depression, difficulty remembering, and finding it hard to make decisions.
What to do if you suspect Parkinson’s disease
Because the symptoms of Parkinson’s can vary so much from one person to another, this condition can be hard to spot in someone close to you, or in yourself.
If you are worried about yourself, (or a family member or a friend,) see your GP. This may help put your mind at rest. Or it may lead to an appointment with a specialist for tests, and if needed, help and treatment.
Diagnosing Parkinson’s disease
Unlike some of the conditions that affect us, there’s no test that can show that you definitely have Parkinson’s disease. A diagnosis can take some time, as the condition affects different people in different ways.
In fact everyone with Parkinson’s disease – and there are thought to be around 145,000 people in the UK with this condition - has their own personal set of symptoms. And the order in which you have the symptoms, and the rate at which they become worse, is also different for everyone with this condition.
The symptoms usually start in a minor way, and become more severe with time. This can make it more difficult to reach a diagnosis in the early stages.
'One of the biggest problems with Parkinson’s disease has always been that by the time the classic motor or movement symptoms – things such as shaking (tremor), slowness of movement and rigidity or stiff muscles – are apparent, more than 70% of cells in the area of the brain affected have been lost,’ explains Professor Nicola Pavese, Professor of Clinical Neuroscience and Deputy Director of the Clinical Ageing Research Unit at Newcastle University.
As a result researchers are increasingly turning attention to non-motor symptoms – constipation, sleep disturbance and loss of sense of smell – they believe could be clues to a process that begins years, or even decades, before motor symptoms kick in. Their ultimate aim is to come up with a simple way to pinpoint people at risk of or with Parkinson’s disease at an early stage so they can be prescribed brain-protective drugs – in much the same way statins are prescribed to those with high cholesterol to help prevent a heart attack.
If you or a loved on has recently been diagnosed Parkinson's UK has a to-do list for people newly diagnosed with Parkinson's disease.
Treatment for Parkinson’s disease
While Parkinson’s disease can’t be cured yet, there are treatments that can help reduce the effect of your symptoms, and help you continue to make the most of your life for as long as possible.
The treatments can be divided into three types.
- Supportive therapies include physiotherapy and occupational therapy.
- There’s also medication that can help reduce the effect of your symptoms.
- If your specialist feels it would be helpful, you may also be offered surgery.
Physiotherapy can help you in a number of ways. Your physiotherapist will suggest exercises for you to do at home that will help you to stay fit.
The exercises will be aimed at improving your flexibility, and your muscle strength, and helping to reduce pain. Improving your strength and your balance is particularly important, as it should help to prevent you falling.
Ask your GP, Parkinson’s nurse, or specialist to refer you to a physiotherapist.
Speech and language therapy
Speech and language therapists can help if you are having trouble communicating – one of the areas of your life that is likely to be affected by Parkinson’s. They may suggest exercises, and ways to make your voice stronger.
They can also help you if you are having difficulties with your facial expression (which may look frozen, and without expression), and with swallowing.
Ask your GP, specialist or Parkinson’s nurse to refer you to a speech therapist. Alternatively, you can do this yourself, by contacting the speech and language therapy department at your nearest hospital.
Occupational therapists are trained to help you with day-to-day activities that you’re finding difficult to manage. This can include washing, getting dressed, even making cups of tea. Their approach is very practical, and they may suggest aids, such as stair rails, to help make your home as safe as possible.
Dietitians can provide useful advice on how changing your diet can help improve some of your symptoms. For instance, dietitians can suggest changes that can help reduce constipation, and improve your intake of vitamins and minerals.
Ask your GP, specialist or Parkinson’s nurse to refer you to a dietitian.
Surgery for Parkinson’s Disease
If medicines aren’t controlling your symptoms, it may be worth talking to your specialist or Parkinson’s nurse about the possibility of surgery. However, surgery doesn’t help everyone, and some people with Parkinson’s find that their situation can’t be helped by surgery.
Deep brain stimulation (DBS) is the operation most often used to treat Parkinson’s. It may help you to control your movements, such as tremor and rigidity.
In some cases it can also mean that you can reduce the amount of medicine you take. This, in turn may reduce the side effects the medicine causes.
Deep brain stimulation involves having very fine wires with electrodes at their ends implanted into your brain. These wires have extensions that go under the skin behind your ear, and then go down your neck. The ends of these extensions connect to a pulse generator that is fitted under your skin, often over or near your chest. (Like a pacemaker.)
When this device is turned on, the electrodes send high frequency stimulation the part of the brain they’re fitted to.
Drug treatment for Parkinson's disease
Medication is one of the treatments available to help treat the effects of Parkinson’s Disease. Your specialist team will know which medicine is likely to be of most help to you.
Parkinson’s drugs may cause some impulsive and compulsive behaviour in some people. Ask a member of your medical team to explain the risk of developing impulsive and compulsive behaviour, when taking these drugs, what steps you can take to avoid or cope with this behaviour, and whether there are any other drugs you can have instead.
This drug is a good choice for many people with Parkinson’s. It has been prescribed for Parkinson’s disease for years, and most people taking it find a noticeable improvement in their symptoms.
Levodopa is described as a ‘chemical building block’. Your body turns this drug into dopamine to replace the dopamine that is lost through Parkinson’s.
Levodopa may make you feel sick when you first start taking it, but this doesn’t tend to last long, and is usually quite mild. It can help to relieve your feelings of nausea or sickness if you take levodopa with or after food. However, taking levodopa with a meal that contains protein can prevent the drug being properly absorbed into your system..
You may be able to avoid this problem if you take levodopa at least half an hour before you eat. An alternative is to eat most of your protein in the evening meal. This will allow levodopa to work best during the daytime, when you’ll probably make best use of it.
Check with your GP or specialist team before you make any changes to your diet. They’ll give you advice on the best times to take levodopa.
To prevent levodopa being turned into dopamine in your blood stream it is always combined with another medicine. These are:
- Madopar or Madopar CR
- Caramet CR, Sinemet, Sinemet Plus, or Sinemet CR
Combining these drugs means that more levodopa reaches your brain, and is converted to dopamine there. The combination of drugs also means that you’re likely to have fewer side-effects. According to Parkinson’s UK, taking Madopar or Sinemet provides long-term improvement for most people.
The drugs Madopar CR and Sinemet CR are both controlled-release drugs. This means that they allow the levodopa into your body slowly, rather than releasing it all at once.
These controlled-release drugs can also mean that you can increase the amount of time between your doses. They can sometimes also reduce your involuntary movements (known as dyskinesia). You can take these drugs before going to bed, and they will reduce the amount of stiffness you have at night, which may help you have a better night’s sleep.
Apomorphine is a dopamine agonist and is one of the main treatments for Parkinson’s symptoms.
Apomorphine takes the place of the dopamine that is missing in people with Parkinson’s, and is able to stimulate the nerve cells in their place.
Apomorphine isn’t right for everyone – some people don’t get much benefit from it. But if this drug helps you there’s usually no reason why you should have to stop taking it.
When you start treatment with apomorphine, you’ll probably begin with a low dose that will slowly increase until your medical team feels that it is at the right level.
You may be prescribed apomorphine or a similar drug on its own, or with the drug levodopa, as this can improve the effect of the dopamine drug.
These drugs are helpful because they can stop you having involuntary movements (dyskinesia). They can also help with other symptoms that don’t involve movement.
Apomorphine (brand name as APO-go or Dacepton) can be given in a number of different ways. These include being injected, and using a pre-filled disposable pen, known as the APO-go PEN, which you can use several times a day. Alternatively, you can have it as an infusion, which means that it is given to you slowly, through a drip in your arm, using a portable pump.
This drug is usually prescribed for people who have had Parkinson’s disease for a while, and whose symptoms aren’t responding well to medication in pill form.
Apomorphine can make you feel nauseous, and may even make you sick. To combat this you can have an anti-sickness drug called domperidone (brand name Motilium), to combat the sickness. You can usually have this anti-sickness drug reduced after a while, and in some cases can stop taking it altogether.
This drug may help if your symptoms have become unpredictable, or if you have been having serious ‘off’ periods. This is when your uncontrollable movements recur, or become worse. This often happens when the drug levodopa wears off.
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Three ways to help yourself if you have Parkinson’s disease
A healthy diet rich in wholegrains, vegetables, fruit and pulses can help combat oxidative stress and damage to cells as well as helping reduce the constipation that is often a feature of Parkinson’s disease.
Sleep problems may be due to Parkinson’s disease itself or to symptoms such as tremor or restless legs. Going to bed and getting up at the same time every day, having a wind-down routine, banishing the TV and electronic devices from your bedroom, limiting naps and keeping an eye on your caffeine and fluid intake can all help.
Exercise can help to improve motor symptoms of Parkinson’s disease and ease fatigue. Low-intensity exercise improves walking in people with Parkinson’s disease: yoga, swimming, walking and dance are all good options.
Ongoing research into Parkinson's disease
Dance and Parkinson's
Sufferers often report that activity eases symptoms, an observation supported by research. In particular, studies suggest that dance may help to improve both physical symptoms such as poor balance and ‘freezing’, and cognitive skills, such as decision-making, which can be impaired in people with Parkinson’s.
Dr Peter Lovatt, founder and director of the University of Hertfordshire’s Dance Psychology Lab, tested this theory out. ‘We found that training people with mild to moderate Parkinson’s to do dances with a strong beat and rhythm – for example, the tango, Bollywood-style dance, the Lambeth Walk and Scottish country dancing – improved sufferers’ mood, mobility, thinking and, most importantly of all, quality of life. Improvised dance (that is, dancing with no set steps or rhythm) also had similar effects, as well as improving divergent thinking – the sort we use to make daily choices such as which clothes to wear, what food to eat and where to go on holiday.’ Further studies are planned to try to discover who benefits most from dance and how long the benefits are likely to last.
Parkinson's and brain training
Neuropsychiatrist Professor David Linden of Cardiff University has been looking at whether brain training may help to modify some of the movement symptoms of Parkinson’s. Using MRI scanning to view the brain in action, Prof Linden and his colleagues found that patients in the early stages of the disease can control a part of the brain linked with movement simply by the power of thought.
‘Thinking about activities ranging from gardening to skiing activated the motor cortex, a part of the brain involved in movement, providing proof of principle that it works,’ he says. The next step is to do a larger randomised, controlled trial to confirm the benefits. ‘If we can replicate these results on a larger scale, brain training could be added to existing drug treatment, and in future we may be able to teach people a modified version of the technique to use at home,’ he says.
Meanwhile, the results of a randomised trial published in npj Parkinson's Disease found that cognitive training help reduce freezing of gait in Parkinson's suffers.
Parkinson's and gut bacteria
‘One of the hallmarks of Parkinson’s disease is the build-up of clumps of a rogue protein called alpha-synuclein in the brain,’ explains Professor David Dexter, Deputy Director of Research at Parkinson’s UK. But it is now thought that things may start to go wrong with alpha-synuclein in the gut where changes may be sparked by some, as yet unknown, environmental factor, which then spreads from cell to cell until it reaches the brain.
The fact that people with Parkinson’s disease often complain of constipation and other digestive problems years before developing the disease, as well as the recent discovery that Parkinson’s disease patients have different gut bacteria from healthy people, lends weight to this idea.
Find out how your gut bacteria affects your mood.
Parkinson's and iron levels
In other research, scientists are hunting for clues as to what causes alpha-synuclein build-up in the brain. A large multi-centre European trial to see whether a drug called a chelator, which removes excess iron from the body was published in The Lancet Neurology. The drug, deferiprone, is already used to treat iron overload in people with some blood disorders.
If deferiprone turns out to be successful in slowing Parkinson’s disease, because it is already on the market it won’t have to go through the lengthy testing new drugs normally need, so it could be available in the foreseeable future.
Parkinson's and sleep
Another fascinating – and revealing – recent finding is that people suffering a sleep disturbance in which they ‘act out’ dreams by shouting, thrashing about or lashing out during the rapid eye movement (REM) phase when most dreams occur, often develop Parkinson’s disease. This fits in with observations that clumps of alpha-synuclein gather in parts of the brain that regulate sleep. The condition – known as idiopathic rapid eye movement sleep behaviour disorder (iRBD) – typically affects men aged 50 to 70 years.
In collaboration with Danish and Spanish researchers, Professor Pavese and his team recently discovered that people with iRBD have high levels of brain inflammation, which they think may damage brain cells. The next step is to determine which patients with iRBD go on to develop Parkinson’s disease. ‘We hope to identify a window during which medications to halt or delay the progress of Parkinson’s disease can be given,’ he says.
For more information and the latest research breakthroughs in Parkinson's disease research visit Parkinson's UK.
How you can help with Parkinson's research
Researchers are looking for both people with Parkinson’s disease and healthy volunteers to take part in trials. Find out more at www.michaeljfox.org or www.parkinsons.org.uk