Treatments and Therapies

Available treatments for Parkinson’s disease include a range of prescription medications, surgery and physical and supportive therapies. All treatments aim to control symptoms but none can yet prevent progression of the disease. Most medications have side effects. Which treatment is most suitable for an individual depends on factors such as the age of the person, the symptoms causing most distress and the severity and stage of their disease.

Medications

Dopamine replacement therapy

Medications that can replace dopamine, the depleted neurotransmitter in the brain, are the mainstay of treatment. Levodopa, a precursor of dopamine, can be converted to dopamine in the brain. It is administered in combination with carbidopa (as in Sinemet and Kinson) or benserazide (as in Madopar), to maximise the delivery of levodopa to the brain and minimise side effects. These medications are usually effective for many years. However, the response tends to wear off or becomes less predictable with time.

Dopamine agonists

Medications such as bromocriptine (Bromocriptine-BC, Bromohexal, Bromolactin, Kripton, Parlodel), pergolide (Permax), cabergoline (Cabaser) and apomorphine (Apomine) stimulate the dopamine receptors in the brain and therefore mimic the action of dopamine. They can be useful at all stages of Parkinson’s disease. In younger onset Parkinson’s disease agonists are sometimes used as initial treatment but in others agonists are prescribed as levodopa sparing agents or introduced once the response

Anticholinergics

This group of medications was the first available treatment for Parkinson’s disease before levodopa. They block the effect of acetylcholine, another brain chemical, to re-balance its levels with dopamine. They include benztropine (Cogentin, Benztrop), biperidine (Akineton) and benzhexol (Artane). Some antihistamines such as diphenhydramine (Unisom Sleepgels) also have anticholinergic activity and a useful sedative effect. All these drugs are now rarely used because of the relatively modest benefits that they give compared with their side effect profile.

Amantadine (Symmetrel)

This drug has both anticholinergic and dopamine agonist properties. It can be useful for many patients in controlling drug-induced involuntary movements (diskinesia).

Monamine oxidase (MAO) type B inhibitors

Medications such as selegiline (Elderpryl, Selgene) prevent the breakdown of available dopamine within the brain and therefore prolong the action of levodopa.

Catechol-o-methyl transferase (COMT) inhibitors

Newer medications such as entacapone (Comtan) and, in some cases, tolcapone (Tasmar), are also used along with levodopa. By blocking an enzyme known as COMT that breaks down levodopa in the intestine and brain, they prolong the action of levodopa and reduce motor fluctuations.

Surgery

Neurosurgery is increasingly common as a treatment for Parkinson’s disease, especially in relatively young, otherwise healthy people. Surgery is best suited to those who obtain a good response to levodopa but have problems with involuntary movements or have large fluctuations in their response to levodopa. Techniques include:

Pallidotomy/thalamotomy

These surgical techniques involve destruction (lesioning) of very small specific areas of the brain associated with symptoms such as tremor and other abnormal movements.

Deep brain stimulation

Rather than surgically destroying areas of the brain such as the globus pallidus, thalamus or subthalamic nucleus, an electrode is implanted in these areas to provide high frequency stimulation which is thought to block their activity, thus mimicking the effects of surgical destruction but with a markedly reduced risk of permanent side effects.

Foetal cell / stem cell therapy

Transplantation of healthy dopamine-forming cells into the damaged area of the brain is still controversial and highly experimental. The most recent studies which were performed overseas have failed to show that they provide benefit for the majority of patients. These treatments are not available in Australia.

Physical and supportive therapies

People with Parkinson’s disease should remain as active as possible, maintaining daily activities and, if possible, a regular exercise program. Support therapies from physiotherapists, occupational and speech therapists can also help with specific exercises, education and retraining to improve coordination, balance and movement. Overall fitness and good muscle tone can help minimise some of the abnormal movements associated with Parkinson’s disease.

Exercise

Physical activity has been shown to have numerous health benefits for all. It helps with weight control and reduces the risk or improves the outcomes of many diseases such as cardiovascular disease, diabetes or depression. People with Parkinson’s disease who regularly exercise will enjoy all these benefits as well as specific assistance with their movement disorder. It will help keep muscles stay flexible and in good tone; increase the range of movement and maintain physical strength. All these factors influence balance, posture and the way you move.

Don’t let a diagnosis of Parkinson’s disease interrupt your daily activities before its time. Continue your regular routines of dressing, eating, showering, etc. to help preserve your mobility and independence for as long as possible. Find out what physical aids or home modifications may assist you and use them. Normal household duties such as gardening, cleaning the car and walking the dog will also help maintain general fitness.

Continue with your current sports and hobbies, such as tennis, bowls, golf or dancing. You may find your performance is gradually affected as your Parkinson’s disease progresses, but the enjoyment, physical activity and social aspects of sport are still very worthwhile.

Incorporate other exercise routines such as walking or cycling. Try a class of aqua-aerobics at your local pool or visit the local gym for a workout. Qualified fitness instructors will be able to modify most activities to suit any limitations you may have.

Take it gradually and don’t overdo it as fatigue can sometimes exacerbate symptoms such as tremor. If you prefer to exercise at home, Parkinson’s Queensland has an exercise video available for loan or purchase.

Support therapies

Working with a physiotherapist, occupational therapist or speech therapist will provide you with specific strategies and aids to help you make the most of living Parkinson’s disease.
Physiotherapy may help with coordination, balance and movement. Speech therapy may help improve problems with speech and swallowing, while occupational therapy can provide you with aids and techniques to maximise your independence with daily activities.

Alternative Therapies

Parkinson’s Queensland Inc. cannot endorse any complementary treatments/medications as cures for Parkinson’s disease, since there is no cure. Many people with Parkinson’s disease do use alternative therapies for relief from symptoms, though. If you wish to use complementary treatments, please discuss this with your doctor before doing so.

Living with PD

One of the key things to remember is that most people with Parkinson’s disease continue to live long and rewarding lives. Living with Parkinson’s does require continual re-adjustment as the disease slowly progresses through to severe disability.

Depending on the level of impairment, daily activities such as getting dressed, driving and eating may become more challenging. Roles within the family, in the community and at work may need to be redefined. An individual’s sense of who they are can also be challenged if the disease adversely affects intimate relationships. Medical treatment can help control symptoms and improve function but it requires careful management to minimise potential side effects.

Family

Family responsibilities can be daunting enough without the addition of a chronic and ultimately disabling disease. Parents need physical strength and stamina to keep up with an energetic young family and participate in all their activities. Having children can also help you to focus on the here-and-now. They provide a powerful motivation to stay active and as well as possible.

The typically slow progression of Parkinson’s disease means most people with it will not miss out on full participation in and enjoyment of family life. Relationships, roles and responsibilities within the family may subtly change as the disease progresses but there is sufficient time for that adaptation.

Children should be included in much of the discussion about Parkinson’s disease and its impact. They are more likely to cope better themselves when they are kept appropriately informed. Ultimately they may become one of the main sources of support for a parent with Parkinson’s disease, so having them on the team early is to be encouraged.

Starting a family

For younger people affected by Parkinson’s disease, the decision about whether or not to start a family is a difficult and uniquely personal one. It will depend very much on circumstances such as severity of disease and family support, as well as personal values and goals. Decision-making is complicated by the fact that there is not a lot of reliable information available, because relatively few young people are affected.

There is evidence that some anti-Parkinson’s medications are not suitable for use during pregnancy or when breastfeeding. However, other medications appear to be safe for the foetus. It is unclear whether or not the physical and emotional demands of pregnancy, childbirth and parenthood can exacerbate Parkinson’s disease in some people. Balancing those potential risks against a strong biological and emotional desire to have a child, will require thoughtful consideration. Medical advice, open discussion with family and friends, counselling and, perhaps, talking to someone who has been in the same situation, may all be helpful.

Work

A diagnosis of Parkinson’s disease does not mean the end of participation in the workforce. Depending on the nature of the work, mild symptoms such as a slight tremor in the non-dominant hand may not affect your employment at all. Given that our sense of identity and self-esteem is often strongly associated with our work role and ability to produce an income, it is indeed preferable to remain in the workforce for as long as practical.

There are several issues to consider and strategies you can adopt in order to maximise your ability to work safely and productively while also living with Parkinson’s disease.

When symptoms start causing problems in the workplace, it may be time to start on medication, or have your current medications reviewed and adjusted. See your doctor for advice on more effective symptom control. Surgical treatment options may also be discussed for younger people.

Disclosure

Telling your employer that you have Parkinson’s disease depends on you – your relationship with your employer and colleagues, and the nature and extent of your symptoms. Often there is a reluctance to disclose for fear of negative attitudes, loss of entitlements or promotion opportunities and even job loss.

However it is illegal in Australia for employers to discriminate against employees or potential employees on the grounds of disability. There are also potential benefits from being open and honest with your employer, including the opportunity to take advantage of flexible work practices or job redesign.

Job modification

Relatively simple adjustments in the workplace, such as the installation of a handrail, may make a huge difference for people with Parkinson’s disease. Depending on their job and their most problematic symptoms, other people may benefit from the removal of specific tasks such as those requiring motor skills and coordination or heavy lifting. Flexible work practices such as regular breaks, reduced hours or working from home may also be helpful to accommodate fluctuating symptoms. Talk to your workplace health and safety officer or human resources staff. If they can’t help, they will be able to access external advice.

Early retirement

If it is impossible to continue in your present job, check with employment agencies about other options. They have a responsibility to assist people with disabilities. Whatever the outcome, remain active. Try to find other purposeful activities that utilise your skills and keep you interested and busy.

Intimate relationships

Sexual relationships are a normal, healthy part of adult life and having Parkinson’s disease should not deter people from continuing to enjoy intimate activities. However it is worth understanding that the disease can impact on people in different ways and some adjustments may need to be made.

Some people find their sex drive has all but disappeared since their diagnosis of Parkinson’s disease. This can be a result of the worry and stress associated with any new circumstances and may gradually settle down as people learn to accept and cope better with the diagnosis. Fatigue is also a well-known cause of loss of interest in sex. Prioritising some time when you are rested and relaxed and symptoms are well controlled can help maintain an intimate relationship. Parkinson’s disease may have a direct, adverse effect on erectile function in some men. People can be reluctant to talk about their sex life with their doctor but it is an important subject that can make a significant difference to your quality of life. Erectile dysfunction may be treated by specific medications or may be remedied by adjustments to the anti-Parkinson’s medications.

Parkinson’s disease can also interfere with sexual activity at an emotional level. People with the disease may not feel sexually attractive as their self-esteem may have taken a battering or they may be depressed. There may also be new issues arising in long-standing relationship, especially as the disease progresses and one partner takes on a caring role for the other. It is therefore important to keep the lines of communication open. Talk to your partner about how you are feeling, how they are coping and what can be done to rejuvenate the relationship.

Don’t worry that sex may be too strenuous or exacerbate symptoms in people with Parkinson’s disease. Physical activity is almost always a good thing. And a healthy sex life is likely to be a great comfort and a distraction from day-to-day problems.

Sexual problems can arise completely independently of Parkinson’s disease. Ageing, menopause and other illnesses such as cardiovascular disease or prostate problems can all impact on sexual interest and activity. Check with your doctor if there are ongoing problems that need to be investigated.

Driving

A driver’s licence is a symbol of independence in our society and, for that reason alone, most people want to retain the ability to drive for as long as possible. The desire to be independent and to maintain a current lifestyle has to be balanced against good sense and judgement when it comes to the likely impact of Parkinson’s disease on an individual’s ability to drive safely.

Your doctor has a key responsibility in the assessment of fitness to drive and will help you decide when your disease has progressed to a stage where an unconditional licence is no longer appropriate. Physical symptoms that restrict your movement, or uncontrolled involuntary movements can obviously interfere with your ability to control a vehicle. However mental clarity and judgement, which can be affected by either the disease or medications, are also critical factors in road safety.

Doctors do not “take licences away” and, in fact, are in the best position to help keep you on the road. So it is important to be honest with your doctor about the progression of your disease and your level of symptom control. He or she can then advise you on the right time to notify the driver licensing authority in your state or territory about your disease and help you with more effective treatment. Even when your disease has progressed to this stage, conditional licenses can be issued if your disease is well managed. Conditional licenses are usually reviewed each year.

Drivers of commercial vehicles such as buses and trucks have to satisfy more stringent requirements than other drivers and may need specialist medical assessment.

Frequently Asked Questions

How do I know I have Parkinson’s disease?

Parkinson’s disease can affect anyone – male or female and at any age, although it is much more common in older age. The four key symptoms are tremor, slowness of movement, muscle rigidity and instability. However, the nature and severity of symptoms can vary considerably from one individual to another. In the early stages of the disease, symptoms may be vague and non-specific, such as fatigue or muscle pain.

What will my doctor do if Parkinson’s is suspected?

Your family doctor may order some tests to exclude other possible causes of your symptoms. However, there is no definitive test for Parkinson’s disease. A diagnosis of Parkinson’s disease relies very much on the symptoms. It is possible you may have to wait for symptoms to develop further to confirm the diagnosis. You may also be referred to a specialist neurologist for assessment.

What causes Parkinson’s disease?

We understand that the cells in a particular part of the brain die off, causing a reduction in the level of the brain chemical dopamine. This primarily affects movement and coordination. However, we do not have a clear idea of what triggers this process and why some people are affected and others are not. For this reason, there are no clues to preventing Parkinson’s disease.

Is Parkinson’s disease hereditary?

The short answer is no. Although about 10 per cent of people with Parkinson’s disease will have a relative who is also affected, the vast majority do not. You should not worry about having passed the disease on to your children. Like many other diseases, Parkinson’s disease is likely to be the result of a complex interaction between both genetic and environmental factors.

Is there a cure?

Not yet. Parkinson’s disease is usually slowly progressive. This is despite the availability of many medications and, increasingly, some surgical options which can help control the symptoms. Many people with Parkinson’s disease live full and productive lives. Parkinson’s Queensland Inc. plays a key role in this and is working with researchers and others in the community to help find a cure.

I take my prescribed medications, what else can I do?

Become well informed about the possible manifestations of the disease. Symptoms can fluctuate widely from day to day, in different situations and in response to different medications. It is also important to stay as active as possible. Don’t give up on daily activities and make a point of incorporating some regular exercise into your life.

Where can I get help?

General practitioners, neurologists, physiotherapists, occupational therapists and speech therapists are amongst those who can provide professional advice on managing your disease. Many people also benefit from talking to other people who are similarly affected with the disease. Parkinson’s Queensland can put you in contact with other individuals or support groups in your area.

How can I help someone with Parkinson’s disease?

You may need some support if you are living with or caring for someone with Parkinson’s disease. Depending on your circumstances, the stage of their disease and their ability to function independently, you may just need information to help you understand the disease. Later, there may be a need for advice and practical support with the physical demands of caring for someone with a progressively disabling disease. Consider also your own personal needs and seek counselling if necessary. Parkinson’s Queensland can provide advice and counselling.

Caring for Someone with Parkinson’s Disease

Parkinson’s disease, like any chronic disease, affects families as well as individuals.

Close family members often take on the role of caregiver as the disease progresses and, in many ways, are as constrained as the person with Parkinson’s disease. Carers can find themselves in a role that may increasingly isolate them from work, family and social activities as they dedicate themselves to care giving. While they may take on the role willingly, the fact is they too have suffered significant loss in terms of opportunities and the future they may have planned.

Carers need factual, credible information and support as much as the person afflicted by Parkinson’s disease. They need someone to talk to about their feelings as much as they might need practical advice. Caring appropriately for someone doesn’t always come naturally and carers may need to learn new skills. Communication and negotiation skills are particularly important in order to balance the needs of both carer and the person with Parkinson’s disease. Carers also need to look after their own health by getting enough sleep and exercise and prioritising some time for themselves.

Symptoms and Complications

Tremor

The “resting tremor” associated with Parkinson’s disease usually affects one side of the body first and is typically more evident when the muscles are relaxed. This is in contrast to other types of tremor, which usually affect both sides of the body, improve with rest and become worse with activity. Tremor usually affects the hands and arms and less frequently the legs, jaw or head. Stress or fatigue exacerbate tremor.

Slowness of movement (bradykinesia)

Activities of daily living such as writing, getting dressed and preparing meals can progressively become more difficult. Facial muscle activity can also be affected, resulting in a staring, expressionless appearance. Difficulty with swallowing and deteriorating speech quality can occur. When large muscles are affected, people with Parkinson’s disease can have difficult standing, “getting going” and walking. Involuntary muscle activity can also be impaired, causing urinary problems and constipation.

Rigidity

Increased muscle tone can cause stiffness, pain and cramps. People with Parkinson’s disease typically become stooped and may walk with a shuffle or a limp. Their arms cease to swing when they walk and they can have difficulty turning around.

Instability

Problems with balance and unsteadiness develop later. People with Parkinson’s disease may have difficulty getting out of bed, out of a chair or into and out of vehicles. Assistance may be needed to maintain mobility while avoiding the risk of debilitating falls.

Complications

Although primarily a movement disorder, it is evident that some aspects of cognition (e.g. thinking and memory) and emotion can be later complications of Parkinson’s disease. This is due to more extensive loss of dopamine function in the brain but also reflects involvement of other chemical transmitters.

Anxiety and depression

Anxiety and depression are estimated to affect up to half of all people with Parkinson’s disease at some stage. People are often understandably sad, pessimistic and anxious about their disease. They have the worry and stress of an uncertain future and they may face critical life events such as an early retirement from the workforce. Apart from these emotional reactions to their underlying disease, people with Parkinson’s disease may also have specific brain changes that increase their risk of depression.

Typical depressive symptoms such as low energy levels and problems with appetite and sleep, can be difficult to pick up in people affected by Parkinson’s disease. When present, anxiety and depression in people with Parkinson’s disease have a major negative influence on quality of life. They usually require treatment in their own right and do not simply respond to anti-Parkinson’s therapy.

Dementia

Mild memory difficulties and diminished capacity to reason or concentrate are relatively common early symptoms. These symptoms usually stay relatively mild and are not a sign of impending dementia. However about one third of people affected by Parkinson’s disease can develop dementia, but this is almost always late in the course of their disease.

Hallucinations are even more common, but together with confusion and delusions, may also be side effects of some anti-Parkinson’s medications. Prominent symptoms of dementia early in the course of the illness are unusual and alternative diagnoses such as diffuse Lewy body disease or coexistent Alzheimer’s disease should always be excluded.

Wearing-off

Wearing-off is a complication that can occur after a few years of using levodopa to treat Parkinson’s disease. During wearing-off, symptoms of Parkinson’s disease start to return or worsen before the next dose of levodopa is due, and improve when the next dose is taken. Many people refer to themselves as ‘on’ while their medication is working, and ‘off’ when the medication has worn off.

When you first start taking levodopa, you feel a noticeable improvement in your Parkinson’s symptoms that is maintained throughout the day. Your medicine effectively tops up dopamine levels in your brain for several hours, so most people get effective symptom control with three doses per day

Parkinson’s disease is a slowly progressive condition, so the symptoms you experience will change and evolve over time. The dopamine level in your brain gradually declines, which makes it harder for each dose of levodopa to prevent symptoms re-emerging, so doses of levodopa are effective for a shorter time. When this happens, most people start to experience fluctuations in symptom control throughout the day.

For some people, wearing-off can begin within one to two years of starting levodopa therapy; for others, levodopa may remain effective for five years or more. Everyone’s experience of Parkinson’s disease is different, so the wearing-off symptoms you notice are individual to you. Many people find that problems with movement (motor symptoms) return during wearing-off, but other symptoms (non-motor) can also occur.

It is important to let your doctor know if you are experiencing wearing-off. Because people with Parkinson’s disease usually visit their doctor when they are ‘on’ (i.e. medication working), your doctor may not realise that your symptoms return between doses of medication. A questionnaire has been developed by Parkinson’s disease specialists to help you recognise whether you experience wearing-off. Please click here to see the wearing-off questionnaire. You may want to print the page and take it with you next time you visit your doctor.

Your doctor can manage wearing-off by adding to or changing your treatment. This might include:

Newly Diagnosed

A diagnosis of Parkinson’s disease can often result in mixed feelings, particularly for younger people (under 40 years of age), as it is less common. As with other chronic illnesses, there is often some relief that there is an explanation for troubling symptoms and ongoing ill health.

However, there is also a very real fear of the unknown and a sense of loss. Given that Parkinson’s disease involves a gradual but inevitable deterioration in physical health and function, it is normal to worry and grieve about the future; mobility and independence; the ability to continue to work and produce an income; and the impact on family and social lives.

At this early stage, however, it is important to focus on getting accurate information about the disease and creating a network of professional and lay support. A general practitioner (GP) is likely to be the first person involved and will remain a central participant in the management of health care for a person with Parkinson’s (PWP). Developing a good relationship with a regular GP who can provide care on an ongoing basis will be extremely helpful. As well as providing information and direct care, a GP can also be an advocate and link to other community resources.

An early referral from a GP to a neurologist is also helpful, since not everyone, especially if symptoms are mild, will need to start on medication at the time of diagnosis. Allied health professionals, including physiotherapists, occupational therapists, speech therapists, dieticians and counsellors or social workers may also have a role in care and the GP can make referrals.

It is important to confide in and enlist the support of trusted family members and friends. Particularly at this early stage, a PWP may need someone to accompany them to medical appointments and help them take in all the information that is available. They can be reassuring and help to cope with fluctuating emotions.

Parkinson’s Queensland Inc. offers a range of services and support that can help PWP and their families come to terms with diagnosis. Meeting and talking to other people who are going through or have been through similar experiences can be particularly useful. No-one has to deal with Parkinson’s disease alone. We offer information sessions, an information line, counselling, access to local support groups, and a range of resources including a video for those people newly diagnosed. Contact us for further information.

Up to 10 per cent of people with Parkinson’s disease are diagnosed before the age of 40 years. Parkinson’s Queensland Inc. recognises that this group of people has specific needs. To help younger people with Parkinson’s better manage the disease, we have the Queensland Young People with Parkinson’s support group (QYPP).

The defining features of Parkinson’s disease are a variable combination of slowness of movement, muscle rigidity and resting tremor. Sometimes the onset of Parkinson’s disease is characterised by vague, non-specific symptoms such as fatigue or localised muscle pain (e.g. the shoulder) making early diagnosis very difficult. People should be aware that other complications can also develop with this disease. Other early symptoms of Parkinson’s disease can include mild depression, restlessness or a softer voice. No two people will experience the disease in exactly the same way. The nature, severity and impact of symptoms can vary markedly.

Management

There are a variety of treatments available for Parkinson’s disease. This section gives an overview of each of these. Select from the list of links below to find out more.

  1. Drug Treatments
  2. Multidisciplinary Support
  3. Surgical Intervention
  4. Symptom Management

Drug Treatments

There is no cure for Parkinson’s disease at present. Drugs are used to try to control symptoms of Parkinson’s disease. There are no perfect drugs, although there are many promising developments.

The main aims of drug treatments for Parkinson’s disease are to:

In most newly diagnosed people, considerable improvements can be achieved by careful introduction of anti-parkinsonian drugs.

As Parkinson’s disease is a very individual condition, medication is prescribed and adapted to individual needs. Response to medication varies from person to person and not every medication will be considered suitable for everyone. It is important to discuss appropriate medication or any changes in medication with your health care professional.

It is important to also maintain a healthy lifestyle, focusing on exercise, relaxation and diet.

Multidisciplinary Support

Early access to a multidisciplinary support team is important. These teams may include doctors, physiotherapists, occupational therapists, speech therapists, dieticians, social workers and specialist nurses. Members of the team assess the person with Parkinson’s and identify any potential difficulties, focusing on improved movement, independence and quality of life.

There are a number of multidisciplinary teams in Queensland that specialise in Parkinson’s management.

Surgical Intervention

Neurosurgery (brain surgery) is an option to treat Parkinson’s symptoms; however, it is not suitable for everyone. There are strict criteria and guidelines as to who can be a candidate for surgery, and this is something that only your doctor and you can decide.
The three commonly used forms of surgery are:

Symptom Management

1. Mobility:

Rigidity and slowness of movement are the two most frustrating aspects. Common difficulties are:

2. Eating and Drinking:

3. Constipation:

4. Urinary Incontinence:

5. Communication

Parkinson’s affects the control of muscle co-ordination and therefore a person’s ability to communicate. The symptoms of tremor, stiffness and slowness can also impact upon the person’s verbal and non-verbal methods of communicating with others.

Verbal Communication

Non-Verbal Communication

Conclusion:

Parkinson’s can cause considerable difficulties in a person’s ability to communicate with others. Speech can be affected in volume, tone, inflection and pace. Facial expression may become mask-like and limb movement restricted. Handwriting can become smaller and smaller until it is indiscernible. These problems however, can be overcome by understanding the complexities of the illness. Concentrate on every movement and one movement only. Regular exercise of everyday movements provides valuable practice and precision. Reduce stress by using relaxation and preparation. Maintain independence and dignity by refusing to allow others to speak for you.

Social Isolation:

There are a number of factors in relation to Parkinson’s disease which can contribute to the social withdrawal of the sufferer. As Parkinson’s disease is a chronic illness, the potential for these factors influencing the individual become greater over a very long period.

1. Communication Difficulties: As explained previously, there are a number of physical restrictions which can impede the person’s ability to communicate with others. The person with Parkinson’s must be given time and not rushed when asked to respond. An empathic attitude will reduce stress and greatly facilitate their ability to communicate. People with Parkinson’s should have social interaction incorporated into their daily activities programme. Education for others, as well as family members etc, will reduce embarrassment for the person with Parkinson’s

2. Physical Symptoms: The most obvious symptom is tremor. Many people with Parkinson’s are extremely embarrassed and attempt to hide the offending limb. Dyskinesias, or abnormal wriggling movements, may also cause distress. In both cases, it is important to reduce the amount of stress the person experiences as this will exacerbate the condition. We encourage people with Parkinson’s to minimize the effect of the movement by stabilising the limb. The tremor is reduced if the limb is involved in purposeful movement, so playing with coins etc. is useful. Dyskinesias may be reduced with a reduction in levodopa intake, though this may cause Parkinson’s symptoms to return

3. Decreased Mobility: As the illness progresses this becomes the largest factor in contributing to the individual’s social isolation. Their ability to physically walk from their home to other areas decreases as symptoms become more severe and medication less effective. Tasks such as, climbing stairs, using escalators, and generally moving around busy areas such as shopping centres becomes nearly impossible. Regular medication reviews to ensure pharmacological treatment is optimally effective and side effects are kept to a minimum, coupled with the use of external cues and other movement strategies can address the problems of decreased mobility

4. Decreased Ability to use Transport: As well as a decrease in the person’s functional mobility, they will also experience difficulty in using various forms of transport eg. driving a motor vehicle. The decrease in reaction time, ability to navigate, fine motor co-ordination, and general limb mobility make it increasingly difficult for the person to have full control of the motor vehicle. Some people with Parkinson’s may require limitations on their licence, or even cancellation. It is advisable to refer people to occupational therapy for a full driving assessment

5. Cognitive Difficulties: People with Parkinson’s may also be experiencing concurrent cognitive impairment, which will impede their ability to follow simple instructions or utilise aids such as cue cards, diaries etc. Difficulty with storing and recalling items from memory is commonly reported and thus the use of a diary or personal messages is recommended. Distraction whilst performing tasks can cause further complications. Encourage the person to break complex tasks into single steps, mentally rehearse each step, concentrate fully on each step and not be distracted by environmental factors

6. Lethargy: All people with Parkinson’s report lethargy to some degree. This should be reduced with effective pharmacological management. Encouraging the person to identify factors which increase/decrease lethargy will help them maintain independence and optimal level of functioning. Other family members should be told about this phenomenon. The person should be encouraged to take regular rest periods to establish stable sleep patterns

7. Depression: At some stage, up to 90% of people with Parkinson’s may experience depression to some degree. Anti-depressant medication may be necessary for more severe cases, for others supportive counselling and education may be appropriate. Depression can result from the grief process at being diagnosed with Parkinson’s, loss of mobility, loss of independence, and a loss of general control over one’s life. This symptom may also be due to other chemical changes occuring within the brain

8. Myths about Parkinson’s Disease: The greatest factor at present which contributes to the social isolation of people with Parkinson’s is their preconceived ideas or myths about the condition. Many people worry that Parkinson’s will either kill them, be inherited by their children, make them totally physically incapacitated, or directly result in dementia. These of course are all untrue. Education at the time of diagnosis is vital in dispelling myths and enlisting the participation of the person and their family in the ongoing management of Parkinson’s Disease. Supportive counselling to allow the individual and their family the opportunity to express emotions such as anger, frustration, fear etc. within a safe environment is extremely therapeutic. Most people worry about what others will think and therefore attempt to hide their Parkinson’s. Acceptance of the illness and participation in management decisions through education will encourage the person to maintain independence and optimal functioning. As well as individual education, broader public awareness campaigns and specific inservice education sessions for health providers will improve understanding of the illness and how we can lessen the stigma associated with Parkinson’s Disease.

Vision

Idiopathic Parkinson’s disease (PD) is a progressive neurological condition which is characterised by motor (movement) and non-motor symptoms.  PD results from a reduction of dopamine in the pathways of the brain and substantia nigra.

PD does not result in loss of vision but visual changes may occur due to eye movement impairment.  These may become more obvious as the condition progresses.

Bradykinesia (slowness of movement) caused by PD may result in the following visual changes:

Reduced Eye Blink Rate and Dry Eyes

Blinking cleanses the eyes by removing dust and impurities.  When blink rate is reduced these impurities can build up.  People with Parkinson’s (PWP) will blink less frequently, causing irritated and dry eyes.  Often a reduced blink rate will lead to excessive watering of the eyes as the tears are not distributed by blinking. Conscious attention to blinking will assist.  Artificial tears in the form of eye drops can help dry eyes.  Avoiding smoky atmospheres is important.

Double Vision

Double vision in PD may be caused by problems moving the eyes or tracking.  Tracking refers to the eye movement from side to side (for example, reading).  Impaired coordination and fatigue of the muscles that move the eyes can result in non-alignment of movement.  Resting the eyes when this occurs should provide relief.

Blurred Vision

Blurred vision in PD can be caused by difficulty in moving the eyes but it may also be a side effect of PD medications.  Modifying reading glasses may improve blurred vision.

Blepharospasm

Blepharospasm occurs when the muscle that closes the eyelid contracts or goes into spasm.  This may result in repeated twitching of the eyelid, difficulty in keeping the eyelid open and sometimes complete closure of the eyelid which interferes with vision.  The latter may be helped by an injection of botulinum toxin into the eyelid.  This will need to be repeated on a needs basis.

Impaired electrical signals and feedback in the brain due to PD may result in the following visual changes:

Colour and Contrast Vision Changes

PWP may find it difficult to discriminate between small differences in colour.  This problem may be worse for shades of blue or blue/green.  Contrast visual changes are associated with difficulty in low light levels.  PWP may be unable to clearly see a light coloured object on a light background.

Perception of Movement

Some PWP do not perceive movements accurately and underestimate the speed of moving objects.  This is a potential problem when driving or as a pedestrian.

Visuo-spatial Orientation

PWP frequently have difficulty assessing accurately the distance between objects.  They may experience problems in negotiating a narrow space or walking past objects.

Reaching out to touch the side of a doorway or other objects may be helpful.  An occupational therapist will give advice about everyday activities and adapting the environment.  Problems with visuo-spatial orientation will impact on driving.

Illusions and Hallucinations

Illusions and hallucinations can be associated with PD and PD medications.  Older people and those with memory problems are more sensitive to this drug side effect.  It is more common in those who have had PD for a long time.  The sudden onset of illusions or hallucinations may be related to an infection or other illness (delirium).

Glaucoma and Parkinson’s

In the past some commonly used anticholinergic PD medications (for example Artane®) would have been avoided in cases of glaucoma.  This is now rarely used and levodopa will not impact on glaucoma.

Some eye drops used in the treatment of glaucoma may cause a lowering in blood pressure and care should be taken if falls are a risk.

Impact and Ongoing Monitoring

Visual changes may increase the risk of falls, impair mobility or cause difficulty with communication.  It is important to remember that many problems with vision will not be related to PD.  If eyesight changes occur these should be discussed with your GP.  Consulting an optician with expertise in neurological conditions is recommended.

A neurologist will include a routine visual assessment as part of a neurological examination.

Swallowing

Idiopathic Parkinson’s disease (PD) is a progressive neurological condition which is characterised by motor (movement) and non-motor symptoms.

Dysphagia (eating and swallowing changes) related to PD varies from slight which may only require conscious attention and minimal intervention to severe which may require alternative feeding methods.

Bradykinesia in PD (slowness of movement) is associated with all automatic repetitive skills including eating and swallowing.  The severity of PD does not always correlate with the severity of dysphagia.

Swallowing changes may take the form of and result in the following:

These swallowing related changes may be embarrassing and challenging for people with Parkinson’s, family members and health professionals.

Delayed Swallow

The gradual changes to muscle control in the mouth and throat may result in a difficulty in moving the food (bolus) from the front of the mouth to the back.  This combined with a delayed swallow means that the placement of food in the mouth is not in keeping with the swallowing reflex.

When liquids are taken the delayed swallow may be associated with the entry of foreign material into the trachea or lungs (aspiration) and a resulting coughing reflex or in some cases silent aspiration.  The body may adjust slowly to this occurrence. However, there is always the risk that aspiration pneumonia may result.

Coughing

Coughing may be an early sign that swallow is impaired.  Consult your doctor for a referral to a speech pathologist.

Aspiration

Aspiration may occur silently hence reoccurring chest infections may be due to impaired swallow and aspiration.  A referral to a speech pathologist for a swallowing assessment is recommended.

Pneumonia

While PD is regarded as a non-fatal condition pneumonia is commonly associated with end of life.

Sialorrhea

Approximately a litre of saliva is produced daily and this is usually swallowed automatically.  However, in PD the automatic mechanism is disrupted resulting in sialorrhea (drooling).  This may be one of the most troublesome symptoms of PD due to its anti-social nature.

Xerostomia

Xerostomia (dry mouth) is a troublesome symptom of PD but may also occur as a side effect of PD medications.  Xerostomia may result in difficulty with swallowing and may impair communication.  It can add to the feeling of anxiety which is frequently experienced in PD.  Xerostomia can lead to increased dental decay and difficulty with dentures.  Xerostomia and sialorrhea may occur intermittently.

Choking

While choking is uncommon in PD it is a potential problem.

Strategies for Delayed Swallow and Coughing

Correct posture is vital for safe swallowing.  Maintaining a straight back (if possible) combined with a slightly forward head position is the safest option.  Do not extend the neck backwards.

Avoid dual tasking such as eating and talking or eating and reading.  Conscious attention to the swallow will assist.

Take smaller mouthfuls and swallow each mouthful before taking the next.

Swallowing changes are usually gradual.  However, if frequent coughing or spluttering occurs, a review by a speech pathologist is essential.  This will determine the need for thickened fluids and modified diet.  There are various levels of diet and liquid modifications.  In severe swallowing difficulties, feeding by alternative means such as Percutaneous Endoscopic Gastrostomy (PEG) may be considered.

Medications may be difficult to swallow due to their size.  PD medications (except for Controlled Release) may be crushed.

Screening for Aspiration

If persistent coughing and chest infections occur, aspiration should be considered.  A referral from your doctor to a speech pathologist for investigation is essential.

A video-fluoroscopy is a commonly used investigation to monitor swallow.

Management of Pneumonia

Pneumonia in PD is a potentially fatal complication and requires prompt medical treatment.

Sialorrhea Management Strategies

Consciously swallow saliva before eating or talking.  Maintain adequate mouth closure

A waterproof pillow cover may assist overnight.

Discuss treatment options with your doctor.  If simple strategies do not ease sialorrhea a current mode of treatment is Botox injections directly into the salivary glands.  Access to this treatment is available through most neurologists.

If saliva is thick, the use of pawpaw extract may be of benefit.  One theory is that thick saliva is the body’s safety mechanism against aspiration of saliva.

Xerostomia Management Strategies

Sip or spray the mouth frequently with water.  Avoid mouthwashes and toothpaste containing alcohol as these will worsen xerostomia.  The use of lemon drops or sugarless gum will temporarily increase saliva production.

Frequent dental reviews will prevent increased dental decay.

Management of Choking

As first aid management of choking changes frequently maintaining up-to-date knowledge is recommended.  Prevention is better than cure with appropriate diet and liquid modifications.

Any swallowing difficulties should be discussed with your neurologist as serious problems may be avoided with prompt interventions.

Surgery

Idiopathic Parkinson’s disease (PD) is a progressive neurological condition which is characterised by motor (movement) and non-motor symptoms.  The gold standard treatment for PD continues to be levodopa therapy.  As the disease progresses and levodopa associated side effects such as dyskinesia (involuntary movements) develop some people with Parkinson’s (PWP) may be considered candidates for surgical intervention.

Parkinson’s related surgery is available in most states in Australia and has been considered a major breakthrough in the management of appropriately selected patients with PD.  There is no place for surgery in the management of early PD.

Stereotactic neurosurgery for PD is not a modern technique but dates back to the 1950s.  At that time the procedure known as thalamotomy targeted the thalamus to provide relief from tremor.  Later in order to address dyskinesia and to a lesser degree bradykinesia (slowness of movement), the globus pallidus was targeted (pallidotomy).  Morbidity and mortality were high and with the discovery of levodopa, surgery became less relevant as a treatment option.

Less than a decade following the discovery of levodopa it became clear that the drug had limitations and subsequently the revival of neurosurgery in PD occurred in the early 1980s.  By this time advances in stereotactic procedures had reduced complication rates and enhanced accurate targeting.

These procedures consisted of permanent destruction (lesioning) of a targeted part of the brain but bilateral lesioning resulted in unacceptable problems such as speech, swallowing and cognitive changes.

More recently deep brain stimulation (DBS) has become a widely practised and accepted form of management for complex PD with an estimated 40,000 patients having undergone the procedure worldwide.  Improvements in understanding basal ganglia dysfunction in PD resulted in a third target, the subthalamic nucleus (STN).  STN DBS is now the most widely performed surgical procedure for PD.  DBS can be safely performed bilaterally.

Indications

Patient selection is decided by a movement disorder specialist with DBS expertise.   Suitable patients must:

Patients who are not suitable for DBS are those affected by dementia, active psychosis and non-response to levodopa.  Older patients may not be suitable candidates due to a greater risk of haemorrhage and worsening cognition.

Procedure

The surgery is performed while the patient is awake in order to monitor the response to the stimulation.  This requires full co-operation and a certain amount of mental resolve on the part of the patient.  Targeting requires a combination of MRI, CT, test stimulation and microelectrode recording of cell firing patterns.

The second stage of the surgery is performed under general anaesthetic and involves the implantation of the pulse generator.  Subsequently, over a period of time, the settings are adjusted to optimise the effects and minimise side effects.  Battery life is currently four to five years.

Long-term studies indicate motor symptom benefits last approximately five years post surgery.  Quality of life improvements are recorded at least two years post surgery.

Adverse Effects

Stimulation related adverse effects include facial contraction, tingling and/or speech changes.

Hardware related effects include infection, broken leads and/or device failure.

Medication related effects are due to either excessive or a reduction in PD medication.

Each DBS site will have varying side effects.  Both the site and the patient selection process are individualised and carefully assessed.

DBS does not impact on disease progression.  It is not curative or neuro-protective.  Generally, DBS will not provide any improvement greater than the best effect or ‘on’ achieved from levodopa.  It can be used to address the disabling dyskinesia resulting from levodopa.  DBS does not improve major non-motor symptoms such as cognition, poor balance or autonomic dysfunction.

DBS remains a reversible treatment for complex PD and currently new targets such as pedunculopontine nucleus (PPN) are being trialed and evaluated as an alternative site which may improve postural instability and gait disorders.

Reference

Rodrigues, J. (2008). Parkinson’s Disease A General Practice Approach (2nd ed.) Perth, Australia: Parkinson’s Australia.