Parkinson's disease: Q and A
Q. What is Parkinson’s disease?
A. Parkinson’s disease is a degenerative disease of the nervous system that causes disturbances in initiating, controlling and co-ordinating movement. Parkinson’s disease is progressive, which means that the symptoms gradually become worse over time and eventually cause disabilities.
Q. Who is affected by Parkinson’s disease?
A. Parkinson’s disease generally affects older people — the average age at the time of diagnosis is 55 to 65 years. Of the more than 60,000 Australians who have Parkinson’s disease, about 5-10 per cent are diagnosed before the age of 50 years. Parkinson’s disease is slightly more common in men than in women.
Q. What causes the movement problems?
A. The movement problems are due to degeneration of certain nerve cells in the middle part of the brain. These nerve cells normally produce a substance known as dopamine — a neurotransmitter (chemical messenger) that is responsible for smooth and controlled body movements. A shortage of dopamine, as seen in people with Parkinson’s disease, causes symptoms such as tremor, stiffness and slow movements.
The quantities of other neurotransmitters (noradrenaline and serotonin) in the brain are also altered in people with Parkinson’s disease. Noradrenaline is the main neurotransmitter of the sympathetic nervous system, which controls automatic body functions such as heart rate and blood pressure. Reduced amounts of noradrenaline may explain some of features of Parkinson’s disease that are not related to movement, such as tiredness and problems regulating blood pressure.
Q. Is Parkinson’s disease inherited?
A. The exact cause of Parkinson’s disease is still uncertain, but it is thought to be related to a combination of genetic and environmental factors.
If you have a family member with early-onset Parkinson’s disease (onset before 50 years of age), then you may have an increased risk of developing the disease at a younger age. But if you have a family member who was diagnosed with Parkinson’s later in life, your risk is only slightly increased.
Q. What are the symptoms?
A. There are 4 main symptoms that doctors typically associate with Parkinson’s disease.
Bradykinesia (slowed movements or lack of movement)
Voluntary movements become slow or difficult to initiate, and automatic movements, such as swinging your arms while walking or gesturing with your hands while talking, may also be reduced. Your friends and family may have also noticed that your facial expressions are less pronounced. Bradykinesia is probably the most disabling symptom, and means that simple tasks, such as dressing and eating, take much longer and are harder to perform.
Tremor (involuntary trembling or shaking)
The tremor associated with Parkinson’s disease occurs when muscles are at rest, and can become worse when you are tired or emotionally stressed. It improves with active movement, and usually disappears altogether while you are asleep. The tremor most often starts in one hand (often described as a ‘pill-rolling tremor’), and may progress to affect the other hand and the arms and legs.
Rigidity (muscle stiffness)
Rigidity is often not noticed by people with early Parkinson’s disease, but it can be detected by your doctor during an examination. Rigidity could be the cause of some of your aches and pains, and the common complaint of ‘freezing’, where your muscles may feel so stiff that they cannot move — this usually occurs when trying to stand up or start walking.
Problems with posture and/or gait
Many people with Parkinson’s disease have a flexed or stooped posture, where they appear to be leaning forward.
Your pattern of walking (gait) may also be affected, causing you to shuffle or unintentionally quicken your steps and break into a run to avoid falling. You may also have difficulty changing direction or stopping walking.
While only one side of your body may be affected at first, both sides are usually affected over time. However, symptoms usually remain more prominent on one side of the body.
It’s important to remember that Parkinson’s disease affects different people in different ways — you may experience some or all of the typical symptoms and the disease may progress slowly or quickly.
Q. Other than difficulties with movement, are there any other physical symptoms?
A. Other problems – so called ‘non-motor symptoms’ – are common and can have a major effect on quality of life. These symptoms can occur at any stage of the condition and can even start before movement symptoms are noticed.
Non-motor symptoms include:
- sensory symptoms (such as pain, numbness, tingling, itch, coldness and loss of sense of smell), which occur in up to 40 per cent of people with the disease;
- tiredness not relieved by resting (which, if it leads to inactivity, can make tremor and other symptoms worse);
- sleep problems (including difficulty falling asleep, restless sleep and nightmares), which affect about 70 per cent of people;
- constipation, which is due to the digestive tract slowing down and decreased mobility;
- bladder problems that can result in needing to urinate urgently and/or more often, urinary incontinence or difficulty urinating;
- orthostatic hypotension (also called postural hypotension), which causes a sudden fall in blood pressure when changing positions – usually standing up – causing fainting (or feeling faint or light-headed); and
- depression and anxiety, which are not just due to having a chronic illness but are part of the disorder.
Constipation (which can be severe), urinary problems and sleep problems can be made worse by some of the medicines used to treat Parkinson’s disease.
Q. Are memory and thinking affected as well?
A. Some degree of impaired memory and thinking can be a problem, most often affecting people who have had the disease for at least 10 years. About 20 per cent of people with Parkinson’s disease have severe loss of mental capacity, while about half have minor problems with memory and reasoning.
Depression also affects many people with Parkinson’s disease. Depression may develop as a reaction to the diagnosis or physical disabilities, but is more likely to be part of the disease process itself.
People with Parkinson's disease may also be affected by anxiety or other emotional changes.
Mental health problems, including psychosis, are a side effect of some medicines used to treat Parkinson’s disease. These side effects often affect older people or those with dementia. Medicines can be changed or adjusted if there is any sign of psychosis or other serious side effects.
Q. What is the outlook for people with Parkinson’s disease?
A. Most people can continue to work full time and lead relatively normal lives for many years after being diagnosed. The disease does not affect your life expectancy, and your age at diagnosis does not seem to have any effect on your long-term outlook. However, due to the progressive nature of the disease, many people do eventually become disabled.
Q. What is Parkinsonism?
A. Some medications (for example, antipsychotic medications); diseases (encephalitis, and other degenerative neurological diseases); head injuries (especially the repeated head injury that occurs in boxing); and toxins can cause similar signs and symptoms to Parkinson’s disease. This set of signs and symptoms is known as Parkinsonism.
Parkinsonism that is caused by medications is usually reversible once the medication is stopped.
Q. How is Parkinson’s disease diagnosed?
A. There is no specific test for Parkinson’s disease. Your doctor may suspect it based on your symptoms and physical examination findings. Usually, there needs to be at least 2 of the 5 major symptoms to make the diagnosis. Your doctor may perform some tests to rule out other diseases that may be causing your symptoms.
An improvement in symptoms after starting medication used to treat Parkinson’s disease helps to confirm the diagnosis.
Q. Can Parkinson’s disease be cured?
A. Unfortunately, there is no cure for Parkinson’s disease. However, it is possible to control (or at least improve) the symptoms with medications and lifestyle adjustments, and surgery can be beneficial for some people.
Q. What lifestyle adjustments can I make to help improve my symptoms?
A. Although there are medications which are very effective for treating the symptoms of Parkinson’s disease, the effects of these medications usually diminish with time. For this reason, your doctor may recommend some lifestyle changes before starting you on medication.
Regular exercise can help you to maintain flexibility and mobility. It also improves posture, balance, strength, agility and even mood. A moderate level of exercise is best — try walking, swimming, tai chi or dancing. Always remember to ask your doctor about an appropriate fitness programme before you start.
Loss of appetite and subsequent weight loss (and even malnutrition) can occur as a result of depression or a decreased sense of smell. Try to maintain a healthy and nutritious diet, with plenty of fibre to prevent constipation. Your doctor may need to prescribe an antidepressant medication if depression is severe or contributing to poor appetite and weight loss.
Q. How can I stop Parkinson’s disease affecting my everyday life?
A. The problems with movement do affect everyday life, but with the help of health professionals you should be able to make adjustments to your daily routine and alterations around your home to help keep you active and independent.
- Speech can become monotonous, slurred or soft, and some people stutter if they have difficulty articulating words. A speech therapist can suggest verbalisation exercises and tongue movements to help you to speak louder and enunciate more clearly.
- As the disease progresses, you may find that eating becomes difficult due to problems with chewing and swallowing. A speech therapist may also be able to help with these problems.
- You may find walking difficult, especially taking the first step. A physiotherapist can give you exercises to strengthen your muscles and improve flexibility, as well as tips on how to improve posture, balance and mobility. Installing railings in the bathroom and hallways or using a walking aid can also help, and removing rugs from your home can prevent tripping.
- There is footwear available that can help improve gait and balance problems, and clothes with fastenings that should be easy to manage (for example, using Velcro instead of buttons, zippers or laces). An occupational therapist can help with suggestions and devices to make everyday tasks easier.
- Your handwriting can become small, shaky, and eventually illegible due to the combination of tremor, rigidity and bradykinesia. Using a large-body pen or pencil or a felt-tip pen may help.
Q. Can Parkinson’s disease affect my sex life?
A. Reduced libido and impotence can result from physical and/or psychological factors of Parkinson’s disease. In addition, some of the medicines used to treat the symptoms of Parkinson’s disease can cause sexual dysfunction in men, and vaginal dryness in women. Fatigue can make matters worse.
It may help to try having sex in the morning after taking your medication. Medicines are available to help men with erectile difficulties, and vaginal lubricants may be of help to women.
Q. What are the different types of medicines used to treat Parkinson’s disease?
A. Because the symptoms of Parkinson’s disease are caused by a lack of dopamine in the brain, most drug treatments — so-called ‘antiparkinsonian medications’ — are aimed at replacing dopamine, prolonging its action or acting like dopamine. (Treatment with dopamine itself does not help, because dopamine taken by mouth cannot enter the brain.)
Levodopa, also known as L-dopa, is the most effective medication available, improving symptoms in more than 80 per cent of people within 6-8 weeks. Levodopa is converted into dopamine by nerve cells in the brain. To prevent it from being converted to dopamine before it reaches your brain, it needs to be given in combination with another medication (carbidopa or benserazide). These combination medications are called Sinemet and Madopar, respectively.
Other medicines available for the treatment of Parkinson’s disease include dopamine agonists, MAO-B inhibitors, COMT inhibitors, anticholinergics and amantadine. Although these medications are generally not as effective as levodopa, they do benefit some people. They are especially useful if levodopa is causing intolerable side effects or isn’t controlling symptoms on its own. These medicines are often used as initial therapy to control relatively mild symptoms, especially in younger patients.
A range of treatments is also available for non-motor symptoms such as depression, sleep problems, constipation and sexual dysfunction.
Q. Are there any problems associated with using levodopa in the long term?
A. The use of medications means that most people with Parkinson’s disease can expect many years of active living. Unfortunately, the initial positive response to levodopa does not always last — its effects often become unpredictable, and various side effects start to appear after about 5 years of treatment. The main side effects associated with long-term levodopa therapy are dyskinesias and the 'wearing-off' effect.
Dyskinesias are involuntary twitching and jerking movements of the head, face and limbs. These uncontrolled movements are the most common adverse effect of prolonged levodopa therapy. Taking a lower dose of levodopa or combining levodopa with another antiparkinsonian medication — a dopamine agonist — may improve the problem of dyskinesia.
The 'wearing-off’ effect, or end-of-dose failure, refers to a decrease in the length of time that each dose of levodopa controls symptoms. This results in periods of impaired movement that abruptly alternate with periods of improved mobility.
Taking smaller, more frequent doses of levodopa or controlled-release levodopa (a preparation that releases levodopa slowly) can help. There is a formulation of levodopa plus carbidopa that can be used in people with more advanced Parkinson’s disease who have severe fluctuations in response to levodopa. The medicine is a gel (brand name Duodopa) that is given directly to the small intestine via a feeding tube. By giving the medicine continuously through a feeding tube, the amount of medicine in the body is constant, reducing the wearing-off effect.
Using a dopamine agonist may also help with the wearing-off effect.
More than half of people who use levodopa will experience these side effects. Your doctor will need to review your medications frequently to assess their effectiveness and side effects. Adjusting the timing and amount of medication you take, as well as the combination of different medications, will ensure that your treatment is optimal.
Summary of medication actions and side effects
|Parkinson's disease medications|
Levodopa plus carbidopa (brand name Sinemet); levodopa plus benserazide (brand name Madopar)
|Dopamine agonists (for example, apomorphine, pramipexole, rotigotine, ropinirole)|
|COMT inhibitors (entacapone — brand name Comtan)|
A combination medicine called Stalevo contains entacapone plus levodopa plus carbidopa
|MAO-B inhibitors: selegiline (brand names Selgene, Eldepryl); rasagiline (brand name Azilect)|
|Anticholinergics (for example, benztropine, benzhexol, biperiden)|
|Amantadine (brand name Symmetrel)|
Q. Is surgery beneficial for people with Parkinson’s disease?
A. Neurosurgery is increasingly used for people who have erratic and disabling responses to prolonged levodopa therapy. Options include deep brain stimulation (currently the preferred surgical treatment), pallidotomy and thalamotomy. These procedures are generally only available in large, specialist centres.
Deep brain stimulation is where electrodes are inserted in the parts of the brain that control smooth motor control. These electrodes are connected to a device that is implanted under the skin near your collarbone.
The main difference between deep brain stimulation and traditional surgery is that you are able to activate and control the device, which sends tiny bursts of electricity to your brain to help control tremor and dyskinesias.
For people taking levodopa, it can help stabilise medication fluctuations and dyskinesia. Rigidity and bradykinesia can also improve with this treatment.
Unfortunately, this procedure is generally not helpful for people who have not responded to levodopa, except for those whose main symptom is tremor. Deep brain stimulation is not suitable for people with dementia, a psychotic illness or a major medical condition.
Pallidotomy, which involves destroying overactive cells in a region of the brain called the globus pallidus, is generally reserved for people with advanced disease that is not controlled by medicines. It can also treat the dyskinesias that result from long-term levodopa therapy, and allow continued use of levodopa.
Pallidotomy may improve tremors, rigidity, bradykinesia, and the wearing-off effect, but the benefits may not last, and this type of surgery does have risks.
Thalamotomy involves destroying a small amount of tissue in the part of your brain known as the thalamus, and is used mainly to treat tremor. It is usually only considered if tremor is severe and not responding to medications. Due to the risks associated with performing this operation on both sides of the brain, it can only be used to treat tremor on one side of the body.
These types of surgery, which permanently destroy small amounts of brain tissue, have mostly been replaced by deep brain stimulation. However, newer methods of destroying specific areas of brain cells without needing to perform surgery are being investigated.
Q. Is there any research into new treatments?
A. Embryonic stem cell transplantation is one of a number of potential treatments for Parkinson’s disease that are being investigated. Embryonic stem cells have the potential to develop into any type of human cell, including dopamine-producing nerve cells. These cells could potentially be transplanted into the brains of people with Parkinson’s disease, as a replacement for their lost nerve cells.
Gene therapy and novel drug treatments are also being actively investigated.
With continued research, improved treatment options and even a cure for Parkinson’s disease may not be too far away.
Q. What support is available for people with Parkinson’s disease?
Support groups can provide both emotional support and practical advice to people with Parkinson’s disease and their families. Talking with other people who are facing similar challenges can lessen feelings of frustration and isolation.
2. National Institute of Neurological Disorders and Stroke. Parkinson’s disease (published Dec 2014; modified 2 Jun 2016). http://www.ninds.nih.gov/disorders/parkinsons_disease/detail_parkinsons_disease.htm (accessed Jun 2016).
3. Mayo Clinic. Parkinson’s disease (updated 7 Jul 2015). http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/definition/con-20028488 (accessed Jun 2016).