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Princess Alexandra Hospital

Movement Disorders Service

Parkinson’s Disease

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Welcome….

We wish to welcome you to our outpatient Movement Disorders service at the Princess Alexandra Hospital and hope that your experience with us is a positive one. Our clinic will offer you a safe health care environment that emphasizes the importance of being proactive about your health.

Our goal is to work together as a team, striving to meet your healthcare needs by providing the highest-level quality care and best possible treatment outcomes. We encourage and invite your input in developing an appropriate and realistic plan of care.

Our outpatient clinics are held every Monday 13:30 to 17:00 and Friday from 9:00 to 12:30. Patients are seen by scheduled appointment only, however we offer many same day appointments for acute needs. After hours care will be directed to the Princess Alexandra Hospital Emergency Department.

We welcome your comments and suggestions at anytime during your time spent with us at the OPD clinic. A feedback form will be given to you after your review for any additional ideas, concerns, or comments.

Our outpatients Movement Disorders service will strive to provide you with the most competent and compassionate care possible. We hope that your experience is a positive and rewarding one.

Again, welcome to our Movement Disorders clinic.Yours sincerely,

Anna Nolan(Movement Disorders Nurse Specialist)Anna completed her nursing degree at the University of Queensland and is commencing her Masters of Clinical Nursing course early 2016. She has worked in the Neurology nursing field for three years at the Royal Brisbane and Women’s Hospital before transitioning to her present role at the Princess Alexandra Hospital.

Dr Alexander Lehn(Consultant Neurologist)Dr Alexander Lehn attended medical school in Germany and conducted his residency and basic physician training in the United Kingdom and Australia. Working with Dr Sarah Olson and nurse Anna Nolan, he runs the deep brain stimu-lation service at the Princess Alexandra Hospital Brisbane. In early 2015, Dr Lehn also started a dedicated clinic for functional neurological disorders at Mater Hospital Brisbane.

Movement Disorders Hotline: (07) 3176 4246

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Table of Contents

Quick facts about Parkinson’s Disease… Parkinson’s Disease Aetiology… Page 4 Information about Parkinson’s Disease and Dopamine… Page 5Parkinson’s Disease Medications… Page 6Autonomic Nervous System…. Page 7Neuropsychiatric Symptoms… Page 8Levodopa medication for Parkinson’s Disease… Page 9Monoamine Oxidase B inhibitors used to treat Parkinson’s Disease… Page 10Catechol-O-Methyltransferase (COMT) inhibitors used to treat Parkinson’s Page 11Disease…Dopamine agonists used to treat Parkinson’s Disease… Page 12Anticholinergic therapy & NMDA Antagonist Medications… Page 13 Information about advanced therapies for Parkinson’s Disease: Duodopa… Pages 14-17Information about advanced therapies for Parkinson’s Disease: Apomorphine… Pages 18-21Parkinson’s Disease and Driving…. Page 22Information regarding PTSS… Page 23Information regarding VOSS… Page 24Information regarding REACH & CARS… Pages 25-26Information regarding CAPS… Page 27Information regarding CEATI… Page 28 Information about Medical Cooling and Heating Electricity Concession Scheme… Pages 29-30Information about Aged Care Assessment Team (ACAT) assessments… Pages 31-32Information regarding My Aged Care… Pages 33-34Information regarding NDIS… Pages 35-36Information about Power of Attorney… Pages 37-38Information regarding Parkinson’s Disease Support Groups… Pages 39-40

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Quick facts about Parkinson’s Disease…- Parkinson’s Disease is the most common major movement disorder and sec ond highest prevalence neurodegenerative condition behind Dementia - One in every 340 people in Australia lives with Parkinson’s Disease - Conservative estimates indicate there are just under 70,000 people living with Parkinson’s in Australia of which 53% are male and 47% are female - On average, 32 new cases are diagnosed every day and 11,900 new cases will be diagnosed in 2015- Of the 70,000 people living with Parkinson’s around 18% or just over 12,000 people are of working age- Deloitte estimates that in 2014 there were 2,391 people aged in their 30s and 40s living with Parkinson’s Disease - In 2014 prevalence of Parkinson’s was higher than many cancers including breast cancer, colorectal, stomach, liver and pancreatic cancer, lymphoma and leukemia, kidney and bladder, uterine, cervical, ovarian and lung cancer- The total economic cost of Parkinson’s in 2014 was over $9.9 billion for the year 2014 – Health system costs, which totalled $567.7 million (53%) are thelargestcomponentofPDfinancialcostsinAustralia.Withintotalhealth system costs, aged care costs and hospital inpatient and outpatient costs make up more than 71% of the total combined - The burden of care borne by carers has increased over 14 times the value in 2005 - OverallthedirectfinancialcostofParkinson’shasincreasedby103%since 2005 and the burden of disease cost has increased by 42% in the same period - There are cost effective interventions that can assist people living with Parkinson’s to achieve a higher quality of life whilst at the same time reducing the cost to the community of this condition

(All information sourced directly from Deloitte Access Economics Report “Living with Parkinson’s Disease” An updated economic analysis 2014; August 2015)


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Parkinson’s Disease Aetiology…TheMovementDisordersclinicteambelievethatyoushouldhaveafirmunderstanding of your disease. Educating yourself on symptoms and treatment options, paying attention to your body and noting any changes are all important steps toward living well with Parkinson’s Disease.

Most cases of Parkinson’s Disease are idiopathic – meaning without a known cause. ResearchershaveidentifiedcertaingenesthatmayplayaroleinParkinson’sdisease, but studies are still ongoing to understand exactly how mutations in these genes are associated with Parkinson’s. Some Parkinson’s Disease symptoms can be linked to stroke, exposure to certain toxins or use of medications. In these cases, the condition is known as secondary Parkinsonism.

Whileresearchershavenotidentifiedacauseyet,studieshavehighlightedsomefactors that are associated with either greater or lesser risk of Parkinson’s disease. Riskfactorsthathavebeenidentifiedinclude:


Advanced age Male gender

Exposure totoxins

Familyhistory

Other unknowncauses

Parkinson’sDisease

Source: Michael J Fox Foundation, 2015; Partners in Parkinson’s Parkinson’s Disease Guide www.michaeljfox.org

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Information about Parkinson’s Disease andDopamine…Parkinson’s Disease is the hypokinetic (diminished power of movement or motor function) movement disorder. It is chronic, progressive and most cases are idiopathic (without a known cause). It is the second most common neurodegenerative (meaning the progressive loss of structure or function of neurons, including death of neurons) disorder after Alzheimer’s Disease and there approximately 17,000 people in Queensland living with Parkinson’s Disease.

The primary area of the brain affected by PD is the substantia nigra, which releases the neurotransmitter (chemical messenger) called Dopamine, which is required for smooth muscle movement and coordination. The role of dopamine is to send signals between the substantia nigra and multiple brain regions. In Parkinson’s Disease the dopamine producing neurons become impaired and/or die resulting in the primary motor symptoms seen in Parkinson’s Disease patients i.e. tremor, slowness of movement and rigidity.

The goal of the Movement Disorders clinic team is to provide an ongoing system of care, support and education to help you maintain optimal functioning for as long as possible and as independently as possible when living with Parkinson’s Disease.

(Source:MayfieldClinicandSpineInstitute,2013;Parkinson’sDisease(PD);www.mayfieldclinic.com)


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Parkinson’s Disease Medications…The Movement Disorders clinic team believes you should have the opportunity to make informed decisions about your care and treatment. Good communication between healthcare professionals and patients is essential. Before commencing treatment our most important consideration is how much Parkinson’s affects your daily quality of life. Our aim is to tailor your medication to suit your lifestyle, as well as treating your symptoms.

Listed below are the major classes of drugs used to treat Parkinson’s disease:

Source: Australian Prescriber Independent Review, 2001, Drugs for Parkinson’s Disease;

www.australianprescriber.com


Levodopa preparations Standard release

Slow release

Rapid release

Levodopa/benserazideLevodopa/carbidopa

Levodopa/benserazideLevodopa/carbidopa

Levodopa/benserazide

Dopamine agonists PramipexoleRopinirole

Apomorphine

Catechol-O-methyltransferase

inhibitors

EntacaponeTolcapone

Monoamine oxidase B inhibitors

Selegiline hydrochlorideRasagiline mesylate

Other NMDA antagonistAnticholinergics

AmantadineBenzhexolBenztropin

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Autonomic Nervous System….Parkinson Disease is a common movement disorder that affects the motor system causingrigidlimbs,shufflinggait,tremorandimbalance.Formanypeople,itcanalso cause malfunctions within the autonomic nervous system (ANS), which is responsible for regulating the involuntary functions of the body.

Research has found that people with Parkinson’s Disease have a loss of the nerve endings that produce the main chemical messenger (Norepinephrine) to the ANS. It is thought that the loss of norepinephrine may explain several of the non-movement features of Parkinson’s Disease.

ANSdysfunctioninParkinson’sDiseasecausessignificantdistressanddiscomfort.Symptoms can include sexual dysfunction, constipation, urinary urgency, drooling, feelings of lightheadedness or faintness – particularly from sitting to standing, excessive sweating, sensory changes – feelings of numbness, tingling, burning and unexplained pain as well as loss of smell and taste.

We believe in the Movement Disorders clinic that optimal quality of life can be attained by recognizing and managing all of the symptoms that arise from Parkinson’s Disease. ANS symptoms can be frustrating, but medical treatment is available for most of them. When you attend your appointment with us we will address the issues that are affecting you and talk to you about your treatment options for optimal management of your symptoms.

(Source: Parkinson’s UK, 2012; Motor and non-motor symptoms of Parkinson’s; http://www.parkinsons.org.uk)


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Neuropsychiatric Symptoms…Depression, apathy, hallucinations, REM sleep behavior disorder, impulse control disorders and cognitive impairment are mostly treatable neuropsychiatric symptoms that can affect a person with Parkinson’s Disease. These symptoms can complicate clinicalmanagementofthedisorderandhaveasignificantimpactonthequalityoflife for people with Parkinson’s and those that care for you.

When you attend a review at the Princess Alexandra Movement Disorder clinic the team will go through a series of screening tests which can include: a Mini Mental Status Examination (MMSE), The Montreal Cognitive Assessment (MoCA) and Hamilton Depression Rating Scale (HDRS). A series of questions will be asked of you which we will then score and give you feedback about the results.

Depression is among the most common neuropsychiatric symptom found in Parkinson’s Disease - approximately 40% of persons with Parkinson’s are diagnosed as depressed. A person with Parkinson’s Disease may also have a features of anxiety and apathy (lack of motivation, interest and emotion) which can lead to not only personal suffering but also caregiver distress.

Acting out your dreams by talking, limb movement or screaming is called Rapid Eye Movement (REM) Sleep Behaviour Disorder. This is a common neuropsychiatric symptom of Parkinson’s Disease and can result in falls out of your bed or injuries to yourself or your partner if it is not treated.

Weunderstandthatyoumayfinditdifficulttotalkaboutsomeoftheseissueswithus when you attend your appointment at the Movement Disorder clinic. This is why weaskyoutofillinthequestionnairethatwillbegiventoyoubeforeyourreview-sometimes it is easier to write things down.

Over time, we hope that we can start to develop an ongoing relationship between yourself and the Movement Disorder clinic team as we would like to address all of your concerns during your appointment and talk to you about the best course of action for managing your health and medically treating the symptoms that affect your daily quality of life.

(Source: Parkinson’s UK, 2012; Motor and non-motor symptoms of Parkinson’s; http://www.parkinsons.org.uk)


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Levodopa medication for Parkinson’s Disease…Parkinson’s disease cannot be cured, but medications can help control your symptoms. When you come for a review at the Movement Disorders clinic, we will conduct a baseline clinical review to establish the severity of your disease, provide information on Parkinson’s disease and talk to you about possible treatment options. Always remember that the use of medication is only part of an effective whole treatment plan.

The introduction of Levodopa in the 1960’s revolutionized the treatment of Parkinson’s disease and it continues to be the most effective symptomatic therapy to treat functional disability. People with Parkinson’s Disease have low levels of dopamine in the brain. Levadopa is turned into dopamine in the body and transported through the blood to the brain, however dopamine alone does not easily pass through the blood-brain barrier. Levodopa is given with Benserazide or Carbidopa so that it can cross the blood–brain barrier more effectively.

The types of Levodopa medication available in Australia are: • Duodopa® • Kinson® • Madopar® • Sinemet® • Stalevo®

Possible side effects caused by Levodopa medication include: • Nauseaandvomiting • Constipation • Posturalhypotension • Increasedvividdreams • Hallucinations • Dyskinesia(involuntarymovements)

It is important to remember that not all symptoms caused by Parkinson’s Disease will respond to Levodopa. It usually helps most with bradykinesia (slowness of movement) and rigidity. Problems with balance and other non-motor symptoms will not be relieved by this medication.

(Source: Parkinson’s Australia; Medical options for Parkinson’s Disease; www.parkinsons.org.au)


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Monoamine Oxidase B inhibitors used to treat Parkinson’s Disease…Monoamine Oxidase type B (MAO-B) is a naturally occurring enzyme in the brain that breaks down the neurotransmitter dopamine. Low levels of dopamine in the brain produce the symptoms of Parkinson’s Disease. MAO-B inhibitors work to block the enzyme from breaking down dopamine and this action leads to an increased level of dopamine in the basal ganglia. This helps with the ability to execute smooth, controlled motor movements.

A MAO-B inhibitor can be used on its own in early Parkinson’s Disease, or in combination with Levodopa, making it last longer or reducing the Levodopa dose amount required.

The types of MAO-B inhibitors medication available in Australia are: • Azilect®(rasagilinemesylate) • Eldepryl®(selegilinehydrochloride) • Selgene®(selegilinehydrochloride)

Possible side effects caused by MAO-B inhibitors medication include: • Nausea • Headache • Insomnia • Confusion • Mayincreasethesideeffectscausedbylevodopa,notably dyskinesias (unwanted involuntary movements)

When you come for a review at the Movement Disorder clinic, we will also enquire what other medications you take. It is important to note that if you are taking some types of antidepressant, you might not be able to take MAO–B inhibitors, due to negative side effects. We will be able to advise you on the best treatment options for you if you decide to treat your Parkinson’s Disease with MAO-B inhibitors.



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Catechol-O-Methyltransferase (COMT) inhibitors used to treat Parkinson’s Disease…COMT inhibitors represent the newest class of Parkinson’s medications and are only effective when used in combination with levadopa. Catechol-o-methyl Transferase (COMT) is a naturally occurring enzyme in the body which breaks down both levodopa and dopamine. COMT inhibitors block the COMT enzyme from breaking down levadopa, thus making more levodopa available for transport across the blood-brain barrier over a longer time. This is why COMT inhibitors are used in conjunction with Levodopa medications. They have no direct effect on Parkinson’s Diseasesymptomsbutareusedtoprolongthebeneficialeffectsoflevodopa.

Clinical studies have shown that COMT inhibitors increase the daily ON time (smooth and even symptom control) by an average of 1 to 3 hours, improve the activities of daily living and allow daily levodopa dosage to be decreased. Correspondingly,theysignificantlyreducethedailyOFF(feelingsofrigidityandunable to move freely) time.

The types of COMT inhibitors medication available in Australia are: • Comtan®(entacapone) • Stalevo®(levodopa/carbidopa/entacapone)

Possible side effects caused by COMT inhibitors medication include: • Increasethesideeffectscausedbylevodopa,notablydyskinesias (unwanted involuntary movements) • Discolorationofurine • Diarrhoea • Abdominalpain • Constipation • Nausea

As Parkinson’s disease progresses, the control of motor symptoms often requires the addition of other drugs to levodopa. The principle aim of COMT inhibitor therapy is to increase the duration of effect of each levodopa dose and thus reduce the time patients spend in the relatively immobile ‘off’ phase.



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Dopamine agonists used to treat Parkinson’s Disease…Dopamineagonistsdifferfromlevodopa,sincetheydonothavetobemodifiedbybrain enzymes in order to activate dopamine receptors. Dopamine agonists actually mimic the effects of dopamine without having to be converted. Dopamine agonist drugs act like dopamine to stimulate your nerve cells. The symptoms of Parkinson’s appear when dopamine levels become too low. Dopamine agonists may be used in place of levodopa or in combination with it.

At this time, no treatment has been proven to slow or stop the progression of Parkinson’s disease. Instead, therapy is directed at treating the symptoms that are mostbothersometoanindividual.DopamineagonistsbegantofindaplaceinroutinetreatmentofPDafterthediscoveryofitsbenefitsintreatingParkinson’sDisease in 1974.

The types of Levodopa medication available in Australia are: • Apomine®(apomorphinehydrochloride) • Cabaser®(cabergoline) • Neupro®(rotigotine) • Parlodel®(bromocriptinemesylate) • Permax®(pergolidemesylate) • Sifrol®(pramiipexole)

Possible side effects caused by Levodopa medication include: • Excessivedaytimesleepiness • Visualhallucinations • Confusion • Swellingoftheankles • Dyskinesia(notascommon) • Compulsivebehaviors(suchasuncontrolledshopping,gambling, eating and sexual urges.)

It is important that not only you, but your family members, carers and/or partners are made aware of these possible side effects so that they can be vigilant. Let your GP or the Movement Disorders clinical team know if you experience any of the above.



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Anticholinergic therapy & NMDA Antagonist Medications…Prior to the development of levodopa, Anticholinergics were the only treatment option available. Anticholinergics correct the imbalance between dopamine and acetylcholine. Acetylcholine is a neurotransmitter, which works in conjunction with dopamine to produce smooth movement. Some of the nerve cells in the brain are specialized to use either dopamine or acetylcholine to send different messages, depending on their purpose. For example, smooth muscle control requires a critical balance of dopamine and acetylcholine.Anticholinergics may be given alone, or with levodopa or dopamine agonists in people with more advanced disease who have a persistent tremor. They may ease dystonia associated with wearing off or peak dose effect. They have little effect on other symptoms of Parkinson’s Disease. Currently in Australia the available Anticholinergics are: • Akineton®(biperidenhydrochloride) • Artane®(benzhexolhydrocholoride) • Benztrop®(benztropinemesylate)

Possible side effects caused by Anticholinergic medications include: • Drymouth • Urinaryretention • Blurredvision • Confusion • Hallucinations • Memoryimpairment

It is important that not only you, but your family members, carers and/or partners are made aware of these possible side effects so that they can be vigilant. Let your GP or the Movement Disorders clinical team know if you experience any of the above.



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Information about advanced therapies for Parkinson’s Disease: Duodopa…Treatment options and recommendations for Parkinson’s Disease (PD) depend on several factors, including the type and stage of PD, possible side effects, your age and overall health as well as your personal preferences. There is no universal treatment that has been shown to either halt or slow Parkinson’s Disease progression. Therefore, our primary goal of treatment at the Movement Disorders clinic is to ease your symptoms related to PD and make sure the appropriate treatment plan is tailored to suit your individual needs.

Currently, all clinical treatment for PD is for symptom relief only. The initial treatment for PD is medication taken orally or delivered transdermally (medication patches), though there are other forms of administration, as the disease progresses. For those individuals with disabling symptoms who do not respond to changes to medica-tion dosages and/or times, we may recommend the consideration of an advanced therapy option for treatment. However, choosing the best advance therapy suited to you would be dependent on the nature and severity of your symptoms, current and previous treatment you have trialed, your mental status, age, capability and personal preference (Marrinan, S. et. al., 2014).

Treatment alternatives for those with advanced PD include deep brain stimulation (DBS) and two types of medication, both administered by continuous pump infusion. These are Apomorphine, which is administered subcutaneously, and Levodopa/Carbidopa intestinal gel, which is administered directly to the small intestine (Lokk, J.2011).Thisinformationsheetwillfocusontheadvancedtherapy,Duodopa®,thisbeing the brand of medicine containing the active ingredients levodopa – carbidopa.

Duodopa®isindicatedfortreatmentinthoseindividualswithadvancedlevodopa-responsive Parkinson’s Disease; meaning those whose symptoms were previously responsive to and managed by taking oral Levodopa medication (i.e.thosewhotakeKinson®,Madopar®,Sinemet®andStalevo®).


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Information about advanced therapies for Parkinson’s Disease: DuodopaContinued…Duodopa®isusedtohelpgaincontrolovertheseveremotorfluctuationsandinvoluntary movements associated with advanced PD - symptoms which place a significantlimitationonaperson’scapabilitytocarryoutdailyactivities,thereforeresulting in a loss of their independence (Parkinson’s Australia, 2015). Duodopa®isadministeredthroughtheuseofanambulatorypumpdevice(seepicture below). The gel is administered with a pump directly into the duodenum or upper jejunum through a permanent tube called a PEJ (Percutaneous Endoscopic Jejunostomy). The PEJ has a long tube that extends low into your digestive tract and allows the medication to be directly absorbed into the small intestine. This is an advantage to the many individuals taking oral PD medications who suffer from “on” and“off”motorfluctuationswhichcanbecausedbydelayedabsorptioninthegastrointestinal tract, thus affecting the delivery of the oral medications into the bloodstream (Animech, 2011).

.

(Picture of Duodopa® intestinal pump; Source: Abbott Products Operations AG, 2011)

TheDuodopa®100mlcassetteisfilledwithLevodopa2000mg,Carbidopa500mg,Carmellosesodium(thickeningagent)andpurifiedwater.ThetotalamountofDuodopa®usedeachdayincludesthreeindividuallyadjusteddoses:themorningbolus dose, the continuous maintenance dose, and an extra bolus dose. The dosage amount will vary, depending on any additional PD medications that you are taking i.e. COMT inhibitors and dopamine agonists. Like your normal medications to controlPDsymptoms,Duodopa®istobeuseddaily,fromthetimeyouwakeupinthemorninguntilyougotobedatnight(AbbVie,2015). Movement Disorders Hotline: (07) 3176 4246

Duodopa®cassette

Duodopa®pump

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Information about advanced therapies for Parkinson’s Disease: Duodopa - Continued…BeforedecidingonusingaDuodopa®pump,wewouldneedtotesttheimpactithas on your “on” and “off” periods and involuntary movements. To do this, medical staff will prepare you for a temporary placement of a Nasojejunal Tube (NJT) which, dependingonyourreactiontotheintestinalgelandtitrationofDuodopa®dosage,could be in place for up to one week (Lokk, J. 2011). With x-ray guidance, the Gastroenterologist will feed the NJT through your nose or mouth into your oesophagus, passing through them to your stomach, and then into your duodenum or jejunum (small intestine). Once the NJT is in place, you will be transferred back to your medical ward.

Oncebackontheward,theDoctorsandnurses(specificallytrainedinDuodopa)willusethetemporaryNJTtoadjusttheDuodopa®doseandgaugeyourresponsetothe treatment. To test your response to the medication, you will be asked to do similar tests to those you do when attending a clinic review at the Movement DisordersclinicatPrincessAlexandraHospitali.e.gaittest,fingertaps,foottaps,fingertonosetestandcheckingyourrigidityandreflexes.

IfyourespondwelltotheDuodopa®trialviayourNJT,themedicalteamwillprepare you for the surgical placement of a PEJ so you can begin using your Duodopa®pump.ThedoseofDuodpa®isdifferentforeachpersonandmayneedadjustments to achieve the optimal dose that works best to control your PD symptoms.Theflowrateanddosageamountisprogrammedintoyourpumpbythe medical team (Doctor or Duodopa Nurse Specialist). If your symptom control changes, any necessary adjustments should only be made by medical professionals trainedintheadministrationofDuodopa®(AbbVie,2015).

Currently, we do not offer this service at Princess Alexandra Hospital so, if you decidedtoproceedwiththeadvancetherapyoptionofDuodopa®,wewouldreferyou to the free public service offered by Dr John O’Sullivan and his Movement Disorders clinical team at the Royal Brisbane and Women’s Hospital. There is a Duodopa hotline number you can ring for any troubleshooting and community nurses trained in Duodopa are also available to make home visits if you require further follow up.


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Information about advanced therapies for Parkinson’s Disease: DuodopaContinued…

References:

AbbVie,2015;DUODOPA Product Monograph;AbbVieCorporation.Saint-Laurent,Qc, H4S 1Z1; http://www.abbvie.ca

Animech, AB. Duodopa Everyday The Treatment. The Pump. The Lifestyle. Abbott Products Operations AG; 2011; http://www.richmondneurology.com.au

Lokk, J. Lack of information and access to advanced treatment for Parkinson’s dis-ease patients. J Multidiscip Healthc; 2011; 4: 433–439.

MarrinanS,EmmanuelAV,BurnDJ.DelayedgastricemptyinginParkinson’sdisease. Mov Disord 2014; 29: 23-32.

Parkinson’s Australia, 2015; Medical options for Parkinson’s Disease; www.parkinsons.org.au


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Information about advanced therapies for Parkinson’s Disease: Apomorphine…Treatment options and recommendations for Parkinson’s Disease (PD) depend on several factors, including the type and stage of PD, possible side effects, your age and overall health as well as your personal preferences. There is no universal treatment that has been shown to either halt or slow Parkinson’s Disease progression. Therefore, our primary goal of treatment at the Movement Disorders clinic is to ease your symptoms related to PD and make sure the appropriate treatment plan is tailored to suit your individual needs.

Currently, all clinical treatment for PD is for symptom relief only. The initial treatment for PD is medication taken orally or delivered transdermally (medication patches), though there are other forms of administration, as the disease progresses. For those individuals with disabling symptoms who do not respond to changes to medication dosages and/or times, we may recommend the consideration of an advanced therapy option for treatment. However, choosing the best advance therapy suited to you would be dependent on the nature and severity of your symptoms, current and previous treatment you have trialed, your mental status, age, capability and personal preference (Marrinan, S. et. al., 2014).

Treatment alternatives for those with advanced PD include deep brain stimulation (DBS) and two types of medication, both administered by continuous pump infusion. These are Apomorphine, which is administered subcutaneously, and Levodopa/Carbidopa intestinal gel, which is administered directly to the small intestine (Lokk, J. 2011). This information sheet will focus on the advanced therapy, Apomorphine™, this being the brand of medicine containing the ingredients Apomorphine hydrochlorideandSodiumMetabisulfite(HospiraAustralia,2011).

Apomorphine™, is indicated for treatment of Parkinson’s Disease to reduce the number and severity of bouts of freezing and stiffness (or “off” periods) - symptoms whichplaceasignificantlimitationonaperson’scapabilitytocarryoutdailyactivities, therefore resulting in a loss of their independence (Parkinson’s Australia, 2015).


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Information about advanced therapies for Parkinson’s Disease: ApomorphineContinued…Apomorphine™,liketheoralmedicationSifrol®,isinaclassofmedicationscalleddopamine agonists. Dopamine agonists differ from levodopa, since they do not have tobemodifiedbybrainenzymesinordertoactivatedopaminereceptors.Dopamineagonists actually mimic the effects of dopamine without having to be converted. Dopamine agonist drugs act like dopamine to stimulate your nerve cells. The symptoms of Parkinson’s appear when dopamine levels become too low. Apomorphine™, may be used in place of levodopa or in combination with it (Deleu, D. et. al., 2004).

Apomorphine™ is given as an injection under the skin (subcutaneously), usually into your lower abdomen or outer thigh. It is given continuously throughout the day as an infusionviaaAPO-go®IIPump(seepicturebelow)(Parkinson’sAustralia,2015).

Before deciding on using Apomorphine™, we would need to test the impact it has on your “on” and “off” periods. To do this, medical staff will prepare you for a hospital stay (up to 1 week). On the day of your trial of Apomorphine™, the medical team will get you to stop taking your PD medications as ideally we want you in an “off” state to assess the medications effectiveness on your symptoms. The medical staff will carry out a number of motor function tests before giving you any medication (similar tests to those you do when attending a clinic review at the Movement Disorders clinic at Princess Alexandra Hospital).


Crono Syringe(Filled with Apomorphine™)

APO-go®IIPump

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Information about advanced therapies for Parkinson’s Disease: ApomorphineContinued…Onceyourmotorassessmenthasbeencompleted,themedicalstaff(specificallytrained in Apomorphine™) will administer a small dose of Apomorphine™ into your lower abdomen. You will be monitored for 30 minutes whilst the drug takes effect and then you will be asked to perform the same motor function tests as before. These assessments allow us to evaluate if you have had a positive or limited motor response to the medication. Depending on your motor reaction, we may administer more Apomorphine™ or the trial may be ceased if there continues to be a limited response on higher doses.

If you respond well to the trial, the medical team will prepare and educate you and/orcareronhowtobegintheApomorphine™infusionviatheAPO-go®IIPump.Thedose of Apomorphine™ is different for each person and adjustments may be needed toachievetheoptimaldosethatworksbesttocontrolyourPDsymptoms.Theflowrate and dosage amount is programmed into your pump by the medical team (Doctor or Apomorphine™ Nurse Specialist). If your symptom control changes, any necessary adjustments should only be made by medical professionals trained in the administration of Apomorphine™ (Hospira Australia, 2011).

It is important that not only you, but your family members, carers and/or partners are made aware of the possible side effects caused by Apomorphine™ so that they can be vigilant. Side effects can include: • Excessivedaytimesleepiness • Visualhallucinations • Confusion • Skininfectionsaroundtheneedlesite • Dyskinesia • Compulsivebehaviors(suchasuncontrolledshopping,gambling, eating and sexual urges.)(Parkinson’s Australia, 2015)

Let your GP or the Movement Disorders clinical team know immediately if you experience any of the symptoms listed above.


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Information about advanced therapies for Parkinson’s Disease: ApomorphineContinued…

References:

Deleu ,D., Hanssens, Y. Subcutaneous apomorphine : an evidence-based review of its use in Parkinson’s disease. Drugs Aging; 2004;21(11):687-709.

Hospira Australia; 2011; Apomine™ Injection and Apomine™ PFS Consumer Medicine Information;Melbourne,VIC3000

Lokk, J. Lack of information and access to advanced treatment for Parkinson’s dis-ease patients. J Multidiscip Healthc; 2011; 4: 433–439.

Marrinan,S.,Emmanuel,AV.,Burn,DJ.DelayedgastricemptyinginParkinson’sdisease. Mov Disord 2014; 29: 23-32.

Parkinson’s Australia, 2015; Medical options for Parkinson’s Disease; www.parkinsons.org.au


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Parkinson’s Disease and Driving….A diagnosis of Parkinson’s does not necessarily mean that you are no longer able to drive, however driving a motor vehicle is a complex task that requires perception, good judgement, adequate responsiveness and reasonable physical capability. Parkinson’s Disease may adversely affect your ability to drive safely, and could result in a crash causing death or injury.

If you have a Queensland driver licence you must report any long-term medical conditions that affect your ability to drive safely. You must report these conditions as soon as they develop—you cannot wait until you renew your licence. If you do not reportyourcondition,youmayreceiveafineofover$7,000andhaveyourlicencecancelled.

Alldriversover75mustcarryavalidmedicalcertificatewhiledriving.Yourcertificatewillbevalidforamaximumof12monthsandyouwillneedtovisityourdoctoratleastevery12monthstogetanewcertificate.Youcouldbefinedover$2,350fornotcarryingyourmedicalcertificate.

If a medical professional determines that your medical condition makes it unsafe for you to drive, you must surrender your licence. If your licence is current or expired within the last 2 years, you can use it before you surrender it as evidence of identity to apply for an adult proof of age card.

Please note that if you surrender your licence voluntarily or have it cancelled because of a medical condition you may be eligible to receive an Adult Proof of Age card free of charge as an alternative form of photo identity.

For more information enquire at a transport and

motoring customer service centre or call 13 23 80 Monday to Friday 8 am – 5 pm

(excluding public holidays)

(Source: Department of Transport and Main Roads, 2012; Medical condition reporting Jets Law;

www.transport.qld.gov.au/medicalconditions)


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Information regarding PTSS…ThePatientTravelSubsidyScheme(PTSS)providesfinancialassistancefortraveland accommodation to patients, and in some cases their carers, to enable them to access essential specialist health services that are not available locally.

PTSS is managed through Queensland public hospitals that accept, assess, approve and fund all PTSS applications and subsidies. To be eligible for PTSS, you must be: • AQueenslandresidentorapatientwithnofixedaddress • EligibleforMedicare • Accessingaspecialistmedicalservicethatis: o Recommended as medically necessary by your doctor o Listed under Schedule 1 as an essential specialist medical service o Not available within 50 kilometres of your nearest public hospital o The closest service of its type.

How do you organize travel?

Your local hospital may either: • Processyourtravelandaccommodationsubsidyamountsafteryouhave travelled to receive treatment OR… • Bookyourtravelandaccommodationonyourbehalf.Youwillneedto discussavailableoptionswiththePTSSofficeatyourlocalhospital. Please note when you book your travel and accommodation the amount reimbursed will exclude the GST amount. Additional information is available for patient’s wishing to apply to access the Scheme from their local Queensland Health facility, or by calling 13 HEALTH

(13 43 25 84)

(All information directly sourced from: Queensland Government, 2012; The Patient Travel Subsidy Scheme; www.health.qld.gov.au/ptss)


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Information regarding VOSS…TheVehicleOptionsSubsidyScheme(VOSS)isaimedatenablingpeoplewithdisability, their families and carers to participate further in social and economic opportunities in their community by providing a package of funding options to meet theirvehicularaccessneeds.VOSSwillenablepeoplewithdisabilityimprovedaccess to their communities of choice and to access their private transport choices by providing subsidies for a range of vehicle access options.

Set subsidy payments as outlined below may contribute towards the cost of: • Lessonsforaneligibleclient,asidentifiedbytheregisteredVOSS prescriber(RVP)tolearntodriveasuitablymodifiedvehicle–upto $500 value. • AVOSSprescriptionbyaregisteredVOSSprescriber(RVP)that includes professional assessment and prescription of vehicle access options,asoutlinedintheVOSSguidelines–upto$800value • Modificationstoavehicletoenableapersonwithdisabilitytobethe operator – up to $4300 value • Modificationstoavehicleforapersonwithdisabilitytotravelasa passenger in a vehicle operated by a family member or carer – up to $4300 value • Thepurchaseofasuitablymodifiedvehicle(withintheVOSSguidelines) – up to $4500 value • Thepurchaseofavehicle,deemedsuitableformodificationtofacilitate the vehicular access to an eligible person with disability – up to $4500 value

EligibilityisconfirmedaspartoftheVOSSassessmentprocess.VOSSeligibilityisaligned with the broader Disability and Community Care (DCCS) guidelines as set out in the Disability Services Act 2006.

A person is not eligible for VOSS if they are entitled to receive assistance for ve-hicularaccessmodificationsfromothergovernment-fundedaidsandequipmentprograms, or if they are entitled to any form of compensation related to their disabil-ity. VOSS encourages people with disability who require assistance with vehicular accesstomakeanapplication.AllapplicationswillassistwithreviewsofVOSStoimprove the scope and process.

For further details about how to access VOSS subsidies please contact your nearest Disability and Community Care Services Centre

or by calling 1800 177 120 (Allinformationdirectlysourcedfrom:QueenslandGovernment,2014;Vehiclepurchaseandmodification;

www.qld.gov.au)


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Information regarding REACH & CARS…Rehab Exercise, Activity & Community Help (REACH) is a group rehabilitation exercise, activity and education program. Within the group, clients work on various exercises and activities at various stations for one hour. This is fol-lowed by half an hour of education, goal setting and peer support. Clients are offered 8 weekly group sessions. Individual reviews are completed before group with reassessment after 8 weeks. Educations sessions are conducted about exer-cise, falls, continence, relaxation, symptom/medication management and nutrition. This also includes weekly goal setting, opportunities for peer support and linking clientswithotherongoingcommunityprograms.Variousgroupsarerunacrossthedistrict (please see list below): Beenleigh REACH: Each Tuesday – 9.30 to 11 am at Beenleigh Community Health.

Brisbane South REACH:EachTuesday–12.30pmto2:00amat4thfloorrehabgym, QEII Hospital.

Logan REACH: Each Thursday – 10.30 to 12 noon at Logan Central Community Health.

Brisbane South REACH: Each Thursday – 2pm to 3.30pm at 8 Mile Plains Community Health.

Browns Plains REACH: Each Wednesday – 10.30 am to 12 noon at Browns Plains Community Health.

For further information please contact: Central Referral HubMetro South Health

Phone: 1300 364 155|Fax: (07) 3156 4382Email: [email protected]


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Information regarding REACH & CARS continued…Community Adult Rehab Service (CARS) is a service designed to help clients get back to doing their everyday activities. Their health teams include: • Physiotherapists • OccupationalTherapists • SpeechPathologists • Dietitians • SocialWorkers • TherapyAssistantsYou need a doctor or health professional to refer you to the service. For the initial assessment you will be visited at home by two clinicians who will conduct an in-depth screen and discuss your global needs and goals for therapy.

Rehabilitation services are provided in: Your home or Community Health Centres located at Beenleigh, Browns Plains, Eight Mile Plains, or Logan Central.

CARS also have a range of groups available for people with: • Parkinson’sdisease • Stroke • Mobilityissues

If you are required to attend the centre, you will need to arrange your own transport. If you are unable to make your own way, you are encouraged to contact Transit Care, Caddies or local Senior Citizens services.

For further information please contact: Metro South Community Referral Hub

Phone: 1300 364 155| Fax: 1300 364 248Email: [email protected]

Website: www.health.qld.gov.au/metrosouth


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Information regarding CAPS…What is the Continence Aids Payment Scheme (CAPS)? - The CAPS is an Australian Government Scheme that provides a payment to assist eligible people who have permanent and severe in continence to meet some of the costs of their incontinence products. - The payment will be made by Medicare directly to the client’s nominated bank account. - TheCAPSprovidesgreaterchoiceandflexibilityforclientstoallowthem to purchase their incontinence products from the supplier of their choice.

How much is the CAPS payment? - The CAPS Payment for 2015-16 is up to $558.90 and is indexed annually.

How often will the payment be made? - Applicants can choose one annual payment in July, or biannual payments in July and January each year. - Medicare will continue to make the payment to a client’s bank accountannually/biannuallyunlessnotifiedotherwise. - Clients are expected to use CAPS funds to purchase continence products.

How do people apply for the CAPS?- Applicants must complete a CAPS Application Form, which includes a health report.- Applicants and their health professional should read the CAPS Application Guidelines prior to completing the application form and health report.- A health professional must complete the health report component.- The CAPS Application Form must be returned to Medicare: Continence Aids Payment Scheme Medicare GPO Box 9822 Sydney NSW 2001

CAPS Application Form and Guidelines are available by calling: Medicare on 132 011 (select general enquiries option) or the

National Continence Helpline on 1800 330 066

(All information directly sourced from: Australian Government, Department of Social Services 2015; CAPS Application Form and Guidelines; www.bladderbowel.gov.au)


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Information regarding CEATI…

Community Aids, Equipment and Assistive Technologies Initiative (CAEATI) • TheCommunityAids,EquipmentandAssistiveTechnologiesInitiative (CAEATI) was introduced in 2014 to promote community access and participation in recreational activities. • Theschemefundsarangeofprescribedaidsincludingsomerecreation equipment to assist individuals who wish to participate in outdoor activities suchascampingorfishing,oraccessingthebeach.• CAEATIfundingisavailabletoindividualswho: - Have a disability - Are aged 65 or under - An Australian citizen and - A resident of Queensland• CAEATIiscappedat$10,000perpersonforaperiodofthreeyears.• TypesofequipmentavailablethroughCAEATIinclude: - Free Wheel Attachment: to enable access to rough terrain in a manual wheelchair - All Terrain Manual Wheelchairs: for more frequent use on unsealed pathways and rough terrain - All-Terrain Powered Equipment: to enable travel across a range of surfaces including sand and bushland, with a range of innovative powered options available

Applying for CAEATI funding:Register with your local office of the Department of Communities,

Child Safety and Community Services and request a Business Information System Identification (BIS) number. To find your local

office call 13 74 68.

(All information directly sourced from: Queensland Government, 2014; Aids and equipment for community access (CAEATI); www.health.qld.gov.au)


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Information about Medical Cooling and Heating Electricity Concession Scheme…The Medical Cooling and Heating Electricity Concession Scheme helps with electricity costs for people who have a chronic medical condition, such as multiple sclerosis,autonomicsystemdysfunction,significantburnsorasevereinflammatoryskin condition, which is aggravated by changes in temperature.

It currently provides $320.97 (including GST) per year, with $80.24 paid into your bank account each quarter to eligible applicants (eligibility is reviewed every two years).

You must: • BeaQueenslandresidentand • Haveaqualifyingmedicalconditionandneedcoolingorheatingtostopyoursymptomsbecomingsignificantlyworse.

Qualifying medical conditions include: • Multiplesclerosis • Autonomic system dysfunction (i.e. Parkinson’s Disease) • Lossofskinintegrityorsweatingcapacity • Severecompromiseoffunctioningsuchasmobilityatextremesof environmental temperature • Hypersensitivitytoextremesofenvironmentaltemperatureleadingto increased pain or other discomfort or an increased risk of complications and • Liveatyourprincipalplaceofresidence,whichhasanair-conditioning unit

The applicant and/or legal guardian of a minor with a qualifying medical condition must: • HoldacurrentPensionerConcessionCardoracurrentHealthCare Card and • Befinanciallyresponsibleforpayingtheelectricitybill.

Full details of eligibility for the concession including qualifying medical conditions, arelistedontheapplicationform.Yourmedicalspecialistmustfilloutthemedicalcertificationsection.


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Information about Medical Cooling and Heating Electricity Concession Scheme continued…If there are multiple applicants living in the same group home with one electricity account, each person can apply separately. If you live in a residential park, caravan park or unit complex, you can apply and will need to show that your electricity usage is individually metered and billed (include an invoice or letter from the manager in your application).

For More Information please contact Concession Services

Smart Service QueenslandPO Box 10817

Brisbane Adelaide Street Qld 4000Telephone: 13 QGOV (13 74 68)

Email: [email protected] Or visit: www.qld.gov.au/concessions

(All information directly sourced from: Queensland Government, 2014; Medical Cooling and Heating Electricity Con-cession Scheme; www.qld.gov.au)


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Information about Aged Care Assessment Team (ACAT) assessments…If you need some help at home or are considering moving into an aged care home, youmayfirstneedafreeassessmentbyanAgedCareAssessmentTeam(ACAT).A member of an ACAT will talk to you about your current situation and work out if you are eligible to receive government-subsidised aged care services.

You will need an ACAT assessment and approval if you have complex aged care needs and want to: • AccessagedcareservicesthroughanylevelofHomeCarePackage • Receiveservicesthroughtransitioncare • Receiverespitecareinanagedcarehome(sometimesknownas nursing home) • Moveintoanagedcarehome.

You will need a Home Support Assessment if you have entry level aged care needs and want to access services through the Commonwealth Home Support Program such as meals or transport.

You won’t need a Home Support Assessment or an ACAT assessment for aged care services that are not subsidised by the Australian Government. For example, services offered by volunteer groups and charitable organisations.

A member of your local ACAT, usually a nurse, social worker or other health care professional will make a time to come to your home (or the hospital, if you’re currently in hospital) and talk to you about how well you’re managing in your day-to-day life. You may like to ask a family member, friend or carer to be with you during the assessment for extra support. The ACAT member may ask your permission to talk to your doctor to discuss your medical history before they meet with you. If you agree, your consent will be recorded by the ACAT member.

After the assessment, the ACAT will write to you to let you know the outcome of your assessment. The letter will specify the services you are approved to receive, as well as the reasons why. You will also receive other information on your assessment.


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Information about Aged Care Assessment Team (ACAT) assessments continued…You should keep a copy of these documents as it will make it easier for service providerstoconfirmthatyouareeligibletoreceivegovernment-subsidisedagedcare services. If you are not happy with your assessment outcome, the letter will also explain how to ask for a review of the ACAT decision.

Respite care is a form of support to give an older person, or their carer a short term break from their usual arrangements. If you have a change in your health or care needs or your carer needs a break from their caring responsibilities, a short stay in an aged care home can be arranged for you. This is called ‘residential respite care’, and can be used on a planned or emergency basis. You will return home after your short stay in an aged care home. To receive residential respite care you will need an ACAT approval for either low-level or high-level care. The ACAT will determine the level of respite care you are eligible for.

If you are in hospital and are ready to leave, but you still need considerable support torecover,thenyoumaybenefitfromtransitioncare.Itprovidesyouwithapackage of services that includes therapy, access to a social worker, nursing support and personal care. Transition care is provided in your own home or in a ‘live-in’ setting. To receive transition care you will need an ACAT approval.

For further information please call1800 200 422

(Operating hours: Monday – Friday 8am to 8pm & Saturday 10am – 2pm) or visit www.myagedcare.gov.au

(All information sourced from: Australian Government, Department of Social Services, 2015; Aged Care Assessment Team (ACAT) assessments; www.myagedcare.gov.au)


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Information regarding My Aged Care…My Aged Care is your one-stop-shop for aged care services and information in Australia. From 1 July 2015 it provides you with information:• Onthedifferenttypesofagedcareservices• Aboutyoureligibilityforservicesandhowwecanhelpyoufindlocalservices• Onassessmentsandreferralstotheprovidersthatcanmeetyourneeds• Aboutthecostofyouragedcareservices,includingfeeestimators.

When you call the My Aged Care contact centre, you will be asked for your consent to create a personalised client record.

Your record will include up-to-date information on your needs and the results of any assessments or any services that you receive. Having a client record will reduce the number of times you need to retell your story. Only you, your nominated representative, your assessor and service providers will be able to access relevant information in your record.

If you are already receiving aged care services you do not have to contact My Aged Care unless your circumstances or care needs change. The Commonwealth Home Support Programme (CHSP) offers a range of different services to help you do that. It is designed to meet your needs, help you stay independent and enjoying your life. Some of the support services available include domestic tasks like cleaning, washing or hanging out clothes, showering, meals, and basic home maintenance like changing light bulbs. If you notice that you need a bit of extra help at home, then care services under the CHSP may be right for you.

If you need more support or have more complex needs, a Home Care Package may suit you. A Home Care Package gives you more options to live independently. It is a personalised, coordinated, ongoing package of support to help you. You, your family or carers understand your needs and goals best, so it makes sense that you choose the support you want in your home. From 1 July 2015, all Home Care Packages are delivered on a Consumer Directed Care (CDC) basis. This gives you greater choice andflexibilityoverthecareandservicesyoureceive.Itgivesyouastrongervoicewhen working with your service provider, to decide what services you want to spend your package funding on.


35

Information regarding My Aged Care continued…CDC also allows you, your family member, carer or advocate to decide how involved you want to be in managing your care package. Your service provider will talk to you about your needs and goals, your care plan and individualised budget. They will also provide you with a monthly income and expenses statement so you know how the funds available to support you are being spent.Care in an aged care home lets you live in a supported environment where help is available 24 hours a day. If you are being looked after by someone, and you need a break from your usual care arrangement, there are services that can help you or your carer to take a break. These services are known as ‘respite services’. If you are in hospital and are ready to leave but you still need support to recover before you return home, you may be eligible for transition care.

To find out how you can access the right aged care services for your needs:

visit www.myagedcare.gov.au or call the My Aged Care contact centre on 1800 200 422*

(Monday to Friday – 8am to 8pm & Saturday – 10am to 2pmThe contact centre is closed on public holidays)

*Calls to 1800 numbers are generally free when made from a landline. All calls made from mobile phones are charged at the rates applicable to

each telephone provider.

(All information directly sourced from: Australian Government, Department of Social Services, 2015; Ageing and Aged Care; www.dss.gov.au)


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Information regarding NDIS…The National Disability Insurance Scheme (NDIS) will start in Queensland from 1 July 2016 with full implementation by 30 June 2019.

On 25 September 2015, the Commonwealth and Queensland Governments announced an early transition to the NDIS in Townsville, Charters Towers and Palm Island. The NDIS is being introduced in stages, because it’s a big change and it is important to get it right and make it sustainable. There are currently seven trial sites across the country, in the ACT, Barkly in the Northern Territory, Perth Hills in Western Australia, the Hunter area in New South Wales, South Australia (for children aged 13 years and under), Tasmania (for young people aged 15-24) and in the Barwon area inVictoria.

Existing Commonwealth and state-based services and supports will continue until eligible people start their plan with the NDIS.

The NDIS is a new way of providing individualised support for people with an impairment or condition that is likely to be permanent, or a developmental delay that affects their ability to take part in everyday activities. The NDIS is being implemented by the National Disability Insurance Agency (NDIA). The NDIS is being introduced in stages, because it’s a big change and it is important to get it right and make it sustainable.

TheNDIStakesaflexible,whole-of-lifeapproachtoworkingwithparticipants,theirfamilies and carers, to develop individualised plans. The NDIS provides participants with more choice and control over how, when and where their supports are provided. It also provides certainty that they will receive the support they need over their lifetime.

The NDIS works to connect participants with community and mainstream supports. The NDIS also funds the additional reasonable and necessary supports to help participants pursue their goals and aspirations, and participate in daily life.


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Information regarding NDIS continued…Helping people to build their social and economic participation requires the NDIS to work closely with community organisations to identify opportunities for people with disability. In Queensland, there are many well-established community organisations who will be important in helping people with disability prepare for the NDIS.

They will also play a vital role in assisting people with disability to achieve their goals.

To access the NDIS people must: • LiveinadistrictwheretheNDISisavailable;• Meettheageandresidencyrequirements;and• Meeteitherthedisabilityorearlyinterventionrequirements

The Queensland Government and the NDIA are delivering a range of information and activities to help people with disability, their families and carers, service providersandthecommunitytogetreadyfortheNDIS.Youcanfindoutmoreaboutupcoming events at www.ndis.gov.au/qld

For more information go to www.ndis.gov.au/qld or call 1800 800 110*

8am to 5pm (AEST) Monday to FridayFor people with hearing or speech loss TTY 1800 555 677

Speak and listen: 1800 555 727For people who need help with English: TIS 131 450

Follow us on Twitter @NDISFind us on Facebook facebook.com/NDISAUSSubscribe to the Queensland NDIS updates:

www.communities.qld.gov.au/ndis*1800 calls from fixed lines are free.Calls from mobiles may be charged.

(All information directly sourced from: National Disability Insurance Scheme, 2015; NDIS in Queensland; www.ndis.gov.au)


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Information about Power of Attorney…A power of attorney is a formal document giving another person the authority to makepersonaland/orfinancialdecisionsonyourbehalf.Personal decisions relate to your care and welfare, including your health care, (for example, deciding where or with whom you live or consenting to medical treatment).Financialdecisionsrelatetothemanagementofyourfinances(forexample,payingyour bills and taxes, selling or renting your home, using your income to pay for your needs or invest your money).

There are 2 types of power of attorney: 1. General power of attorney and 2. Enduring power of attorney

Youwoulduseageneralpowerofattorneytoappointsomeonetomakefinancialdecisionsonyourbehalfforaspecificperiodorevent,suchasifyou’regoingoverseas and need someone to sell your house or pay your bills. It’s used while you can still make your own decisions and ends once you no longer can (i.e. you lose capacity).You have lost capacity to make a decision if you cannot • Understandthenatureandeffectofthedecision;• Freelyandvoluntarilymakethedecision;and• Communicatethedecisioninsomeway.

Youwoulduseanenduringpowerofattorneytoappointsomeonetomakefinancialand/orpersonaldecisionsonyourbehalf.Forfinancialdecisions,youcannominatewhetheryouwanttheattorneytobeginmakingfinancialdecisionsforyoustraightaway or at some other date or occasion, such as once you’ve lost capacity to make these decisions. Your attorney’s power to make personal decisions only commences when you lose capacity to make these decisions.

To make an enduring power of attorney, you must understand the nature and effect of making an enduring power of attorney, including: • Theconsequencesofpreparingtheenduringpowerofattorney• Thatyoumayspecifyorlimitthepowertobegiventoyourattorney,and instruct your attorney about the exercise of the power in the enduring power of attorney• Whenthepowerbegins• Thatoncethepowerbegins,yourattorneywillhavefullcontroloverthe exercise of the power (subject to any terms in the enduring power of attorney


39

Information about Power of Attorney continued… • Thatyoumayrevoketheenduringpowerofattorneyatanytimewhile you have capacity to do so • Thatthepowercontinuesevenifyoulosecapacity • Ifyoulosecapacityyouareeffectivelyunabletooverseetheuseofthe power.When doubt arises over whether a person has the capacity to make an enduring power of attorney, the Queensland Civil and Administrative Tribunal (QCAT) can make a decision about that person’s decision-making capacity.

You can complete an enduring power of attorney form yourself. However, you might wishtofirsttalktoyoursolicitor,thePublicTrustee,aprivatetrusteecompanyorafinancialplannerwhocangiveyouprofessionaladvicetailoredtoyourcircumstances.

You should leave your original document in a safe place, such as with your bank, but it’s important to keep a copy to refer to.You should also give a copy to anyone else who may need to be involved, such as: • Yourattorney • Yourdoctor • Yoursolicitor • Youraccountant • Yourstockbroker • Yourbank

You do not need to register your completed document unless it is likely to be used in transactions related to buying or selling land. To register your document, you must take the original copy to the Titles Registry and pay the fee. If the power is revoked, you must deregister the document by lodging a revocation form with the Titles Registry.

For more information please contact Office of the Public Guardian

1300 653 187| 07 3234 0870| Email: [email protected] Care Decisions 1300 753 624

(All information sourced from: Queensland Government, 2015; Power of attorney and making decisions for others; www.qld.gov.au)


40

Information regarding Parkinson’s Disease Support Groups…Living with Parkinson’s disease or caring for someone with Parkinson’s is full of challenges, but you don’t have to feel alone. Parkinson’s Queensland currently operates 48 support groups throughout metropolitan and rural Queensland.

A support group is an informal gathering of people who share similar experiences, situations or problems. Parkinson’s Queensland support groups offer members a chance to meet and talk with others while offering each other emotional and practical support. Besides helping you realise you are not alone, a support group gives you a chance to share your feelings and hear the experiences of others.

Meetings are informal and friendly, and new members are always welcome. Parkinson’s disease support groups are ideal for people living with Parkinson’s disease, their carers, friends and family members. Support groups encourage the growth of knowledge. By knowing more about Parkinson’s disease through the experience of others, and through professional resources, you will discover new ways of dealing with your own symptoms and challenges. Support groups can help you renew your sense of hope in dealing with changes to your lifestyle, and offer you the chance to make new friends.

Support Group meetings typically involve: • Groupdiscussionsandsharingexperiences,information,practicaltips and advice on living with Parkinson’s disease • VisitsfromtheParkinson’sQueenslandstaffmembers • Socialactivities • Guestspeakerswhoareinvitedtomeetingstodiscusstopicaland relevant subjects. These may include occupational therapists, social workers and doctors • Parkinson’sQueenslandsupportgroupsalsohavearangeofsupport and information resources for use by members.

Parkinson’s Queensland support groups use a self-help model and are not therapy groups. Our support groups are coordinated by volunteers who may also be a health professional from your local area, a person living with Parkinson’s disease or a carer.


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Information about Parkinson’s Disease Support Groups continued…Support groups appeal to a range of people for a variety of reasons. Some members like to be very active and involved in the planning of meetings and activities, other members prefer to simply enjoy the company. Support groups vary in their dynam-ics, from the number of members, to the age and interests of the individuals.

When you join a Support Group meeting, you may meet people who have had Par-kinson’salotlongerthanyou.You’lldefinitelymeetpeoplewhohavehaddifferentexperiences to yours. Don’t be afraid. No two people with Parkinson’s are ever the same and it’s important to remember that everyone’s journey is unique.

To find out more information about Parkinson’s QLD support groups, please contact 1800 644 189 or

Email: [email protected]

(All information directly sourced from: Parkinson’s Queensland; Support Groups; http://parkinsons-qld.org.au)


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Notes

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Notes

Princess Alexandra Hospital

Date created: December 2016Review date: December 2019

Brochure no. PIB0068/v1

Partnering with Consumers - This patient information brochure supports National Safety and Quality Health Service Standard 2 (2.4.1).Consumers and/or carers provided feedback on this patient information.

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