Parkinson’s disease (PD) · PDF fileParkinson’s disease ... Parkinson’s...

Parkinson’s disease (PD)

Slide 2

What is PD?

• Disorder of the brain• Chronic• Progressive• Incurable• Complex• Affects body movement• 2nd most common

neurological disorder in Australia

Presenter notes: Parkinson’s disease is a disorder of the brain. It is chronic, progressive, incurable and complex condition which primarily affects the control of body movement. However PD is also associated with several non‐motor symptoms such as constipation, drowsiness and changes in mood. PD can lead to significant disability and reduced quality of life, however medications as well as non‐medicine strategies can help reduce symptoms of PD. PD is the second most common neurological disorder in Australia, after Alzheimer’s disease. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 Parkinson’s Australia. Parkinson What’s That? www.parkinsons.org.au/publications/newly‐diagnosed.pdf

64,000 Australians in 2011 have PD

64,000 Australians have PD

Presenter notes: An estimated 64,000 Australians in 2011 have Parkinson’s disease. This effectively means that one in every 350 people in Australia live with the condition. From a global perspective, PD affects all cultures and races, with an estimated worldwide prevalence of 6.3 million people.

References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 European Parkinson’s Disease Association. Guide to living with Parkinson’s disease http://epda.eu.com/patientGuide/LWP_1_05_symptomsOfPD.asp Parkinson’s Australia. Parkinson's Disease Information Sheet 1.1 Description and Incidence www.parkinsons.org.au/about‐ps/pubs/InfoSheet_1.1.pdf

Slide 4

Who gets PD?

Presenter notes: PD is often perceived as a condition affecting older people. However, it is important to recognise that one in 10 patients in Australia are younger than 45 years of age when diagnosed. The median age of Parkinson’s disease onset is 62 years. While the median time living with the condition is 12.2 years, many people live with Parkinson’s disease for well over 20 years. The occurrence of Parkinson’s disease increases with age, affecting:

•1% of the population older than 65 years; •2.5% of those older than 80 years; and •More men than women References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012

What causes PD?

Could it be:

• ? Genetic factors

• ? Environment factors

• …the research continues

Presenter notes: So what causes Parkinson’s disease? The cause of the disease remains unknown. Since the early 1960s it has been known that the symptoms are primarily related to a lack of a chemical in the brain called dopamine. Dopamine is contained in the brain in nerve cells. Although losing nerve cells is a completely normal process that occurs in even the healthiest person, in PD a very large number of cells are lost from a specific area of the brain that controls movement. It has not been determined what destroys these cells. At present, genetic and environmental evidence appear to be risk factors contributing to the cause of PD. Current evidence indicates that the development of PD in people below the age of 40 or 50 may be inherited in some families. It is not considered to be genetic though 10% of cases have a familial incidence. At present there is no known cause and therefore the illness is termed; "idiopathic". Research into PD is ongoing. References: Parkinson’s Australia. Available at: www.parkinsons.org.au/about‐ps/whatps.html#Cause Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 European Parkinson’s Disease Associate .A guide to living with Parkinson’s disease. http://epda.eu.com/patientGuide/LWP_1_00_welcome.asp

Slide 6

Genetic factors

• 10-30% report a family history of PD

• Risk of developing PD is three times higher when a first degree relative affected

Presenter notes: Approximately 10–30% of patients with Parkinson’s disease report a family history of the disease, and there appears to be a number of ‘susceptibility genes’ that increase the overall risk of developing the disease. The relative risk of developing the disease is more than three times higher for an individual when a first‐degree relative is affected. People are usually classified as having ‘familial’ (genetically‐linked) Parkinson’s disease or ‘sporadic’ disease, where genetics are assumed to play a minor role.

References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012

Environmental factors

Potential risk

• Herbicides

• Pesticides

Potentially protective

• Smoking

• Coffee

Presenter notes: Although many environmental risk factors for Parkinson’s disease have been suggested, evidence suggests that in most cases the effects of environmental factors are relatively small. Exposure to herbicides/pesticides is the main environmental risk factor associated with PD. This link was initially identified in the late 70s and early 80s, when several drug users developed severe Parkinson’s disease‐like motor symptoms within a few days in response to chemical exposure. They had been attempting to synthesise a heroin‐like compound for intravenous use but the compound became contaminated with methyl‐phenyl‐tetrahydropyridine (MPTP). Researchers later found that MPTP is taken up by certain nerve cells in the brains of animals, and leads to the death of these cells. In addition, occupational exposure to heavy metals, chemicals and magnetic fields have also been suggested to increase the risk of developing Parkinson’s disease. Although research is inconclusive, an association seems to be stronger and more consistent for pesticides in general and particularly for insecticides, than for any other compound. There is substantial evidence that both smoking and coffee consumption could be actually protective against Parkinson’s disease, however both smoking and excessive caffeine consumption are associated with other health problems. There may also be weak protective effects of alcohol and perhaps mid‐life physical activity. It also appears that certain anti‐inflammatory drugs (known as NSAIDs) may confer a protective effect; this may be because inflammation is involved in the disease process. With respect to diet, there is tentative evidence that dairy products increase the risk of PD and dietary vitamin E lower the risk of PD.

References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 Parkinson’s Australia. Parkinson's Disease Information Sheet 1.1 Description and Incidence http://www.parkinsons.org.au/about‐ps/pubs/InfoSheet_1.1.pdf

Slide 8

Diagnosing PD

What the doctor is looking for• animated expression

• arm tremor present either when resting or extended

• stiffness in limbs or neck

• ease of rising from a chair

• a normal walk with a symmetrical arm swing

• ability to regain balance quickly if pulled off balance

Presenter notes: To diagnose Parkinson’s disease, the doctor takes a careful neurological history and performs an examination. There are no standard diagnostic tests for Parkinson’s, so the diagnosis rests on the clinical information provided by the person and their family/carer and the findings of the neurological exam. The doctor looks for:

• animated facial expression is – a person with PD can have a ‘mask‐like’ expression or no expression; they may smile less and seem less animated;

• tremor in the arms which is present either when at rest, or extended;

• stiffness in the limbs and neck;

• ability to rise easily out of a chair;

• normal walking style ( i.e. a good stride) or the use of short steps; symmetrical arms swing

• ability to regain balance quickly if pulled off balance. This is called the ‘pull test’. A person with PD would fall backwards as they would be unable to regain their balance quickly enough.

Younger people are especially challenging to diagnose as they often present with atypical, vague symptoms and also because Parkinson’s disease is not usually anticipated in this age group. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012. Parkinson’s Disease Foundation www.pdf.org/symptoms Parkinson’s Disease Foundation www.pdf.org/en/diagnosis

Symptoms of PD

Motor (movement) Non-motor (non movement)

Resting tremor Loss of sense of smell

Slow movement Constipation

Rigid (stiff) Excessive daytime drowsiness

Postural instability Mood disorders

Low blood pressure/dizziness when standing

Behavioural and psychiatric symptoms

Presenter notes: Parkinson’s disease (Pd) is a progressive neurological condition meaning that the symptoms of the disease gradually worsen over a period of years. It is characterised by both motor (movement) and non‐motor symptoms. There are four primary symptoms of Parkinson’s disease: resting tremor, bradykinesia, rigidity and postural instability. All four symptoms relate to motor (movement) dysfunction, and how these symptoms present and their severity varies markedly from person to person. It is these symptoms that the examining doctor will be trying to observe. If three of these symptoms are present a provisional diagnosis of PD may be made. In PD, symptoms usually appear slowly and, at first, a symptom such as tremor often only affects one side of the body. However, some people will display less common symptom patterns in the early stages of PD, and this makes their condition less typical and more difficult to recognise. There are many other non‐motor symptoms which may present in a person with Parkinson’s. These symptoms are all considered in the diagnostic process. Some have been listed on the slide. References: Parkinson's Australia. What is Parkinson's?. www.parkinsons.org.au/about‐ps/whatps.html . Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012.

Slide 10

Motor symptoms

Resting Tremor

Bradykinesia Rigidity Postural Instability

10

Presenter notes: The four main motor symptoms of PD are: Resting tremor‐ the first and most common symptom, occurring in about 75% of sufferers. Usually tremor begins in a hand and is unilateral (affects one side of the body) in the early stages, although in later stages the tremor may affect both sides of the body. In some people the legs, lips, chin and jaw may also be affected. Tremor motion in the hands is often termed as ‘pill rolling’ since the fingers and thumbs tend to move in opposition as though a small object was being rolled between them. Bradykinesia ‐ slowness of movement, is more likely to be found in older people upon presentation. The general effect is that it takes longer and requires more effort to complete daily tasks. Slowness and difficulty in initiating and executing automatic repetitive movements is commonly experienced. Rigidity ‐ causes stiffness and inflexibility of the limbs, neck and trunk. Like bradykinesia, rigidity is more common in older people. Muscle rigidity refers to the resistance felt in muscles when they are passively moved Postural instability ‐ a tendency to be unstable when standing upright becomes more prominent at later stages of disease. This symptom results in impaired balance and co‐ordination so is often the primary cause for falls.

Postural instability can cause patients to have a stooped posture and characteristic signs of this symptom include flexion at the knees, hips and waist and walking on the balls of the feet References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012. Parkinson’s Australia. Parkinson's Disease Information Sheet 1.3 Diagnosis of Parkinson’s http://www.parkinsons.org.au/about‐ps/pubs/InfoSheet_1.3.pdf

Non-motor symptoms

• Loss of sense of smell• Constipation • Excessive daytime

drowsiness• Mood disorders • Low blood pressure or

dizziness when standing• Behavioural and

psychiatric symptoms

Presenter notes: People with Parkinson’s disease may present with a variety of symptoms, some of which are not directly associated with motor(movement) activity. It is important to appreciate that non‐motor symptoms may actually be the first ones to appear, sometimes many years before motor symptoms. Some of the most common pre‐motor symptoms include:

•hyposmia (reduced sense of smell);

•constipation; •excessive daytime drowsiness;

•mood disorders – depression and anxiety arising from both the impacts of the disease on the individual, disease pathology and adverse effects of medication;

•low blood pressure in response to a person standing up quickly from a sitting or lying position ‐this can cause effects such as dizziness and falls . It can be prevented/minimised by taking more time to stand up; and

•behavioural and psychiatric symptoms ‐ depression and anxiety arising from both the impacts of the disease on the individual, disease pathology and adverse effects of medication. In those people who have early‐onset disease, depression precedes the motor symptoms of the disease in about a third of all cases; said to develop in 40% to 70% of sufferers after diagnosis; a high rate of cognitive impairment and dementia as Parkinson’s disease progresses. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012. Parkinson’s Australia. Parkinson's Disease Information Sheet 1.3 Diagnosis of Parkinson’s http://www.parkinsons.org.au/about‐ps/pubs/InfoSheet_1.3.pdf

Slide 12

Early diagnosis

• Better control of motor and non-motor symptoms

• Enhanced function

• Improved quality of life

• Consider non-pharmacological treatment

– Exercise

– Nutrition

– Support services

Presenter notes Early diagnosis of Parkinson’s disease offers several advantages. By the time most people seek medical attention, motor symptoms needing treatment are typically present. Early and accurate diagnosis allows for the effective treatment of both motor and non‐motor symptoms early in the disease, enhancing the function and overall quality of life.

People diagnosed with early PD generally benefit from early non‐pharmacological interventions, including education, exercise, nutrition and support services. Early pharmacological treatment may enhance existing motor function and improve the prognosis of the disease. Michael J. Fox a Canadian actor was diagnosed with PD at the age of 30 and established the Michael J. Fox Foundation that is dedicated to finding a cure for PD. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012. Parkinson’s Australia. Parkinson's Disease Information Sheet 1.3 Diagnosis of Parkinson’s www.parkinsons.org.au/about‐ps/pubs/InfoSheet_1.3.pdf

Looks like PD but.....

...it could be

• Essential tremor

• Drug-induced parkinsonism

• Dementia with Lewy bodies

• Parkinson-plus syndromes

Presenter notes: There are many neurological conditions that can be mistaken for Parkinson’s disease. They exhibit similar symptoms to PD. However the symptoms, although similar to PD are different and should be used to distinguish Parkinson’s disease from other neurological diseases. Having a tremor in your hand and falling over does not necessarily mean you have PD. If you are concerned that you or someone you know may be showing symptoms that may possibly by due to PD, go and speak to your doctor. They will refer you to a specialist for assessment. The most common conditions that have parkinson‐like symptoms are:

•essential tremor ‐ involuntary shaking movement in which no cause can be identified;

•drug‐induced parkinsonism ‐ a reversible condition with the clinical features of Parkinson's disease but caused by antipsychotic drugs;

•dementia with Lewy bodies ‐ a type of dementia closely related to Alzheimer's and Parkinson's disease and is characterised by the presence of Lewy Bodies in the brain; and

•Parkinson‐plus syndromes – for example corticobasal ganglionic degeneration, multiple system atrophy, progressive supranuclear palsy. References: Firipis M. Essential CPE: Parkinson's disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012. Parkinson’s Australia. Parkinson's Disease Information Sheet 1.3 Diagnosis of Parkinson’s www.parkinsons.org.au/about‐ps/pubs/InfoSheet_1.3.pdf

Slide 14

Newly diagnosed

• Get accurate information

• Establish a network of health care providers

• Make contact with your state-based Parkinson’s association

• Confide in family and friends

Presenter notes: A diagnosis of Parkinson's disease can often result in mixed feelings, particularly for younger people (under 40 years of age). Sometimes there is some relief that there is an explanation for troubling symptoms and ongoing ill health. However, a positive diagnosis of PD can be accompanied by fear. Given that Parkinson's disease involves a gradual but inevitable deterioration in physical health and function, worry and grief about the future; loss of mobility and independence such as the ability to continue to work and produce an income and the impact PD will have family, these are all normal reactions. Some tips on what to do if newly diagnosed with PD may include:

•Get accurate information – at the early stage it is important to focus on getting accurate information about the disease. This is best obtained from health care providers such as a general practitioner (GP). Develop a good relationship with a regular GP who can provide care on an ongoing basis will be extremely helpful.

•Establish a network of health care providers ‐ An early referral from a GP to a neurologist is also helpful. Pharmacists will be able to explain medication requirements for PD. Other allied health professionals, including pharmacists, physiotherapists, occupational therapists, speech therapists, dieticians and counsellors or social workers may also have a role in care. Make contact with your state based Parkinson’s association ‐ Look for the Parkinson’s Disease Association in your state. These organisations provide information, counselling and support to people living with Parkinson's disease, their partners, carers and families. They also have an interpreter service.

•Confide in family and friends ‐ It is important to confide in and enlist the support of trusted family members and friends. Particularly at the early stage, a person with PD 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. Reference Parkinson's NSW. Newly diagnosed. www.parkinsonsnsw.org.au/about‐parkinsons‐disease/newly‐diagnosed/ Parkinson’s Victoria. http://www.parkinsonsvic.org.au/

Managing PD

It’s a team effort

Presenter notes: Parkinson’s disease cannot be cured but it can be managed with support and treatment. The overall goal in the management of Parkinson’s disease is to improve motor or movement (resting tremor, rigidity, bradykinesia, postural instability) and non‐motor ( loss of smell, constipation etc) symptoms so that patients are able to achieve the best possible quality of life. It must be remembered that no two people with PD have exactly the same PD symptoms, so no two people will have exactly the same treatment. Managing the treatment and supporting a person with PD is a team effort. With the help of doctors, neurologists ( specialists) and other members of the health care team such as pharmacists, physiotherapists, counsellors, dieticians, occupational therapists as well as family and/or carers, they can help decide which treatments to use.

Slide 16

Drug treatment

• Improve symptoms in newly diagnosed people

• Tailored to suit each individual

• Doses adjusted as symptoms change

Use a dose administration aid

Presenter notes The main method of treating PD is with medication, which aims to relieve the symptoms. Many kinds of medications are available. Unfortunately, no medication has yet been proven able to cure PD or delay its progression. In most newly diagnosed people considerable improvements can be achieved by careful introduction of anti‐parkinsonian drugs. As Parkinson's disease affects each person differently and the disease progresses at different rates and the type and severity of symptoms varies for each person, medication regimens are tailored specifically for the individual. To ensure that the medication is taken correctly and at the right time, a dose administration aid may be used. Speak to your pharmacist about establishing this service. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012. Parkinson’s Disease Foundation www.pdf.org/en/meds_treatments

Limited mobility

• Walking slowing with a shuffling gait

• May freeze (sudden inability to move)

• Running gait of small steps

• Tendency to fall

Try decluttering rooms and walkways in the home

Presenter notes: The next series of slides will discuss some of the symptoms of PD and what can be done to help the person with PD achieve the best possible quality of life. A person with PD may walk slowly with a shuffling gait, have a stooped posture, may freeze (sudden unpredicted inability to move) and have a running gait of small unsteady steps. People living with Parkinson’s frequently have an increased tendency to fall, especially in high traffic and obstructed areas such as hallways and cluttered rooms. The person with PD may also have difficulty in rising from a chair or bed and problems turning in bed. They may suffer from low blood pressure and dizziness on standing. Try to declutter bedrooms and pathways to allow the person with PD to more easily move through the area and reduce the chance of a fall and subsequent injury.

Slide 18

Pain

• Occurs in about 50% of people with PD

• Usually muscular pain

• Cramping

• Involuntary contractions of the muscles

Observe the signs of pain and treat pain with analgesics if necessary

Pain Don’t forget about the pain. Pain is a problem in about 50% of all people living with Parkinson’s. It is normally muscular pain and is worsened during periods when the person with PD’s medication is ‘wearing off’(when the drug’s effect wears off before the next dose is due). Cramping can also occur and can be painful. In some instances patients can develop involuntary contraction of the muscles which is also very painful and may disrupt sleeping patterns. Be aware that a person with PD may be experiencing pain. Look at their facial features for signs of pain such as grimacing although this may not be noticeable as people with PD often show little expression. Ask your doctor or pharmacist about treating this pain. References Parkinson’s Australia. WWhheenn yyoouurr PPaattiieenntt hhaass PPaarrkkiinnssoonn’’ss.. wwwwww..ppaarrkkiinnssoonnss..oorrgg..aauu//aabboouutt‐‐ppss//nnuurrssiinngg..hhttmm

Sleep disorders

• Affects 60-98% of people with PD

• Altered sleep patterns

• Sudden daytime sleep

• Fatigue

Exercise and relaxation classes may help improve sleep patterns

Presenter notes Sleep disorders are very common in Parkinson’s disease, affecting 60% to 98% of sufferers. They may occur as a part of the disease or as a result of medications or other conditions that the person may be suffering (e.g. depression, anxiety, pain). Sleep may be interrupted by an inability to move or turn in bed due to low levels of medication. Sleep patterns may be affected by PD and its medication. Altered sleep patterns, sudden onset of day time sleep, fatigue and drug‐induced nightmares can also occur. Strategies to improve the sleeping patterns of the person with PD include implementing routine sleeping and waking times, exposure to bright light and encouraging patients to engage in daytime activities and exercise especially relaxation classes; avoid the stimulants such as caffeine and alcohol before bedtime, schedule a daytime nap if the resident experiences insomnia. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 Parkinson’s NSW InfoSheet_2.7_Sleep and Parkinson's’ disease www.parkinsonsnsw.org.au/assets/attachments/documents/InfoSheet_2.7_Sleep‐and‐Pd.pdf Parkinson’s Victoria. WWhheenn yyoouurr PPaattiieenntt hhaass PPaarrkkiinnssoonn’’ss.. wwwwww..ppaarrkkiinnssoonnss..oorrgg..aauu//aabboouutt‐‐ppss//nnuurrssiinngg..hhttmm

Slide 20

Swallowing problems

• Slower swallow

• Difficulty swallowing

• Drooling; dribbling

•Sit upright•Smaller mouthfuls•Use alternate dosage forms•Regular oral care

Presenter notes The ability to swallow can also be affected by PD. A person with PD may have a slower swallow and they will need to concentrate more. Safe swallowing of food and medication is essential to avoid choking and entry of foreign material into the trachea or lungs, which can lead to pneumonia. Difficulty swallowing may also lead to weight loss and a poorer quality of life for patients with Parkinson’s disease. Drooling, is also common issue in Parkinson’s disease patients. To improve swallowing in people with PD, try to sit them upright, take smaller bites of their food and add a thickening product to thin liquids. Medication dose forms (e.g. dispersible tablets or transdermal patch) may help to overcome problems with taking medication. Care must to taken not to compromise drug efficacy and safety by crushing medications that should not be crushed. Always talk to your pharmacist before crushing any medication. Observe for coughing as this may be an early sign that swallowing is impaired. Also observe for recurring chest infections which may occur may be due to impaired swallowing and entry of food and liquid into the lungs. If the person suffers from dry mouth, sip or spray the mouth frequently with water. Avoid mouthwashes and toothpaste containing alcohol as these will worsen dry mouth. The use of strategies such as '1‐2‐3‐SWALLOW' and ensuring plenty of time to finish meals in an environment where distractions are reduced will help. Good and regular mouth care is important and referral to a speech pathologist who can develop a secretion management plan should be considered particularly if the person suffers excess drooling and if they have dentures. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 Parkinson’s Victoria. Nursing Care. www.parkinsonsvic.org.au/about‐ps/nursing.htm Parkinson’s NSW. Swallowing and Parkinson’s Disease. www.parkinsonsnsw.org.au/assets/attachments/documents/InfoSheet_2.2_Swallowing%26PD.pdf

Low blood pressure

• Orthostatic hypotension

• Can occur suddenly

• Take care when rising from a sitting position

• May result in falls

•Increase salt and fluid intake•Avoid heat and prolonged periods of exercise•Take time to get up from chairs and bed•Use hand rails for support

Presenter notes Low blood pressure occurring when the person with PD stands up is known as orthostatic hypotension. It is often associated with dizziness and weakness and can occur when the person with PD changes position quickly e.g standing up from a chair or getting out of bed. Combined with their lack of mobility, postural hypotension may cause the person with PD to fall.

To combat this try increasing salt and fluid intake, avoid heat and prolonged exercise, wear compression stockings and take time to get up from chairs and bed may help. When getting out of bed, have a hand support such as a walking frame or a hand rail close to the bed to provide support. Orthostatic hypotension is often worse after large meals so eating smaller meals more frequently, comprising of lower carbohydrate and fat content, is recommended. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 Parkinson’s Victoria. Nursing Care. www.parkinsonsvic.org.au/about‐ps/nursing.htm

Slide 22

Constipation

• Observed in over 80% of people with PD

• May require drug treatment

• Can be painful

•Increase fluids, dietary fibre, exercise•May need laxatives or stool softeners•Always check with your doctor and pharmacist

Presenter notes Constipation is one of the most common symptoms associated with Parkinson’s disease, with it being observed in over 80% of people with PD. patients. A lack of exercise, poor fluid and food intake and certain medication may contribute to this particular symptom. Constipation can also cause pain. Try to increase fluids, dietary fibre and exercise to help combat constipation. Certain laxatives and stool softeners may be required. Always talk to your doctor and pharmacist about which medication would be appropriate for treatment.

References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 Parkinson’s Victoria. Nursing Care. www.parkinsonsvic.org.au/about‐ps/nursing.htm

Bladder control

• Nocturia

• Urinary urgency

• Incomplete bladder emptying

• Urge incontinence

•Give medication on time•Pelvic floor exercises

Presenter notes A person with PD may require help getting to the toilet due to their reduced mobility. They may experience urinary urgency and frequency (need to urinate more often than usual). These are common and many people with advanced Parkinson’s disease also report with nocturia (excessive urination at night) and incomplete bladder emptying. These symptoms can be worsened if the levels of medication in the person with PD get low.

Ensuring that medications are given on time, will help reduce urge incontinence. Referral to continence services, pelvic floor exercises and selective use of anticholinergic medications may also help. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012

Slide 24

Communication issues

Verbal • slowed, slurred speech

• reduced volume

Non-verbal• mask-like expression

• reduced eye blinking, body language movements

• language and handwriting size•Listen carefully•Avoid noisy areas•Allow more time for talking and writing

Presenter notes: Many people living with Parkinson's are affected by difficulties with communication. The loss of facial expression and body language can also make communication more difficult, as often the visual feed back of a smile or grimace is not present. Speech may become slurred and often volume is affected. People with PD often also develop small handwriting. This symptom effects written communication. Be aware that people with PD can have a very quiet voice with poor articulation. Listen carefully and give them a little more time to answer questions. Try to reduce the amount of surrounding noise when talking to people with PD. Talk in quiet areas. As handwriting may become very small and hard to decipher, try using visual cues such as lined paper. It may be of use to involve a speech pathologist to assist in developing an effective communication strategy. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 Parkinson’s Victoria. Nursing Care. www.parkinsonsvic.org.au/about‐ps/nursing.htm

PD and exercise

Presenter notes Exercise is an activity that can help to ease some of the movement difficulties of PD. It can also improve physical and mental health symptoms of PD and improve mobility and mood. Physiotherapists can recommend exercises (e.g. stretching, strengthening, cardiovascular fitness and balance training) to improve gait, flexibility and general fitness. Exercise can also have a very positive psychological effect on people with PD, switching the focus onto healthy body functioning. Exercise can also help with the management of constipation, sleep difficulties and muscle strengthening. A physiotherapist may be able to recommend exercise and activity classes designed for people with PD. Exercise should not be strenuous or uncomfortable, but rather gentle, enjoyable and beneficial to the person with PD. For example, something as simple as daily walk is a useful form of exercise. Tai chi is another gentle form of exercise that can be done by most people with PD. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 Parkinson’s Victoria. Nursing Care. www.parkinsonsvic.org.au/about‐ps/nursing.htm

Slide 26

PD and nutrition

•Assist at meal times

•Eating may be slow

•Allow time for eating

•Try smaller meals

•Increase number of meals

Presenter notes Adequate nutrition is vital to maintain health. Unplanned weight loss is a potential problem for people with PD. Weight loss may be related to nausea caused by medications which reduces appetite and also painful and slow movements. Difficulty with swallowing also makes eating more difficult. Many people living with Parkinson's also have a reduced sense of smell which can impact upon appetite. Tremor and dyskinesia can burn calories and cause weight loss. A person with Parkinson’s may require assistance at mealtime due to reduced manual dexterity. Allow plenty of time for eating which may be a slow process. Chewing and swallowing can be affected and there may be a risk of choking/aspiration. Ensure that the person with PD has enough to drink as low fluid intake can lead to dehydration. Because eating is slow, try eating smaller meals and having them more frequently. You may need to consult a dietician. Avoid meals with a high protein content when taking certain PD medications. Discuss this with your doctor and pharmacist. References: Firipis M. Essential CPE: Parkinson’s disease. Canberra (ACT): Pharmaceutical Society of Australia; 2012 Parkinson’s NSW. Nutrition and Parkinson’s Disease weww.parkinsonsnsw.org.au/assets/attachments/documents/InfoSheet_2.3_Nutrition%26PD.pdf

Caring for the carer

• Find out about PD

• Communicate

• Maintain interests

• Look after you health

• Seek help

• Take a break

• Contact community PD services

• Carer support groups

Presenter notes: Caring for a person with Parkinson's can be challenging, both physically and emotionally, and therefore it is important that carers receive the support that they need. The help of a carer is vital to the daily life and health of a person with Parkinson's, but the welfare of the carer should not be forgotten. A carer may find it helpful to:

•Find out about Parkinson's ‐ make sure that the person with Parkinson's receives the most effective treatment for their symptoms. This offers relief to the carer because the person with Parkinson's is better able to cope with daily activities, and is also less likely to succumb to distressing emotional disorders such as depression or anxiety;

•Communicate well with the person with Parkinson's – allowing them to have their own ‘voice’. The ability to share experiences and laugh together can be a great stress reliever;

•Maintain interests outside the home – whether it is talking to a friend on the telephone, pursuing hobbies, attending a regular club/meeting, or visiting a Parkinson's carer support group;

•Take good care of their own health, and visit the doctor to discuss medical treatment, practical/emotional support, or personal concerns such as sexual issues. Exercise, a balanced diet and sleep are also vital to good health;

•Seek help as soon as it is needed; •Take a break ‐find time for themselves, and make a point of relieving any stress. In addition to the ideas described above, relaxation techniques such as massage, yoga or aromatherapy can be beneficial for both a carer and a person with Parkinson's.

•Contact community services ‐ who may be able to help with daily chores, and can also offer daycare or holiday relief schemes, which can give both the person with Parkinson's and the carer a break; and

•Contact Carers Support groups in your state e.g. Carers NSW, Vic, SA, WA, Tas, Qld and NT. Reference Parkinson’s Victoria. Caring for someone with Parkinson’s. www.parkinsonsvic.org.au/about‐ps/caring‐with‐ps.htm

Slide 28

Where to get help

• Your neurologist (specialist)

• Your doctor

• Your pharmacist

• Parkinson’s Australia (state-based groups)

• Parkinson’s support groups

• Movement disorder programs • Community services at your local council

• Independent Living Centre

Where to get help Your neurologist Your doctor Parkinson’s Victoria Tel. 1800 644 189 Parkinson’s support groups Movement disorder programs Community services at your local council Independent Living Centre

Resources

• Parkinson’s Australia 1800 644 189 www.parkinsons.org.au– free interpreter service 131 450

– provide information in a range of languages

• State based organisations – NSW www.parkinsonsnsw.org.au/

– VIC www.parkinsonsvic.org.au/

– WA www.parkinsonswa.org.au/

– QLD parkinsons-qld.org.au/

– ACT www.parkinsons.org.au/ACT/index.html

– SA and NT parkinsonssa.wordpress.com/

Presenter notes: Parkinson’s Australia has a toll free number:1800 644 189 . It also has a free interpreter service available on 131 450. Also provide information for health professionals and carers. Written information available via the website and can be downloaded from www.parkinsons.org.au.

Slide 30

Summary

• Parkinson’s disease (PD) is a progressive neurological disease

• PD affects movement; tremor, slowness of movement, rigidity and postural instability

• PD may also cause constipation, drowsiness and changes in mood and behaviour

• Currently there is no cure, but medicines and other non-medicine strategies can help manage the symptoms of PD

• Managing PD is a team effort – seek help from health professionals and support services

30

Presenter notes: This is a summary of the important points from the presentation.

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