Helpful information to assist your Parkinson’s journey.
This information is designed to support, not replace, the relationship that exists between a patient and their health professionals. It is important that you discuss any issues or concerns you have about your Parkinson’s with the doctors and other health professionals in your care team.
Bowel & Bladder (with the Continence Foundation of Australia)
Constipation is one of the most persistent symptoms of Parkinson’s. Management of constipation is very important for your wellbeing, medication uptake and quality of life. Strategies to manage constipation in people living with Parkinson’s should be similar to those with spinal injuries, as bulking up your bowel movements with fibre may cause more issues. You should aim for one movement per day, as when untreated constipation can lead to further health issues.
Dehydration
People with Parkinson’s lose their thirst mechanism, so it is very important to track water over the day to avoid dehydration. As a guide, 6-8 glasses per day can help with medication uptake, alleviate constipation, fatigue, cognitive function and mood. Over time, chronic dehydration may lead to confusion, balance issues, weakness and kidney problems.
Driving
Driving is a complex task and Parkinson’s-related physical, emotional, and mental changes may affect your ability to drive safely. You may wish to find an Occupational Therapist (OT) to assist you to maintain your confidence and suggest ways that would enable you to stay driving safely for longer. You will be required to report your medical condition and undergo a Medical Fitness to Drive assessment to meet requirements of your state/territory Driving Authority and/or your insurance.
Driving Alternatives
When driving safely is no longer an option, there are many alternatives to help you keep your independence and get you to where you need to go to maintain your wellbeing. Look to public transportation, companion driving services, facility, religious, and council/shire services and family and friends to lend a hand.
Employment
There are many ways to maintain employment as a person living with Parkinson’s or someone caring for someone with Parkinson’s. Look to HR for support with templates and more information about your workplace rights through the Fair Work Ombudsman’s flexible working arrangements, the Carer-inclusive Workplace Initiative, and the Disability Gateway.
Genes & heredity
Genes such as SNCA, PARK2, PINK1, and LRRK2 can increase the risk of developing Parkinson’s, but they account for only 10-15% of all cases. It’s important to remember that having these genetic mutations does not guarantee that you or your children will develop Parkinson’s (i.e. about 90% of cases are not directly inherited). The collective influence of genes, environment, and lifestyle determines the likelihood of developing the condition, giving you some control over your health.
Hacks, tips & tricks
Living well with Parkinson’s, especially when diagnosed at a younger age, involves adopting various strategies and “hacks” to navigate daily life. Here are some YOPX hacks from people living with young onset. Remember, humour and creativity can be powerful tools in facing Parky challenges. Turn the everyday into an adventure, and you’ll find joy and resilience in unexpected places. Download the app for more inspiration!
Incidence & prevalence in Australia
The Parkinson’s Australia-commissioned Ecosystem of Parkinson’s in Australia paper presents estimates of the incidence and prevalence of Parkinson’s across Australia for 2020 using age and sex stratified population data available from the Australian Bureau of Statistics and the best possible summary incidence and prevalence data from international meta-analyses.
Living well with Parkinson’s
Living well with Parkinson’s involves a holistic approach that includes physical, emotional, and social aspects. Our top tips are doing regular physical activity; taking medication on time, every time; practicing good nutrition, good hydration and good sleep habits; paying attention to your mental wellbeing; and staying socially connected. Remember, each person’s experience with Parkinson’s is unique, so tailor these strategies to your specific needs.
Parkinson’s diagnosis
Parkinson’s diagnoses are typically done by a specialist that undertakes a clinical assessment, thorough medical history and potentially uses scans to rule out other similar conditions. There is no one test readily available to definitively diagnose Parkinson’s yet. Response to dopamine replacement may also be used as an indication of Parkinson’s, as your body is no longer making dopamine in quantities needed to maintain your mood and movement.
Parkinson’s FAQs
Living with Parkinson’s is a personal journey, influenced by your own choices and circumstances. Every person’s experience is different, with symptoms and how they progress varying greatly. While there are common things seen in Parkinson’s, how the condition unfolds is hard to predict. Even your healthcare provider can’t say for sure which symptoms you’ll face, when they’ll appear, or how severe they’ll be. Your journey is unique to you, and your experience may be very different from others’.
Planning for your future
Getting a diagnosis of Parkinson’s at any stage of life can understandably feel overwhelming when contemplating the future. It’s natural to have concerns about how you will progress and impacts on your daily life, relationships, and plans. However, with proactive planning and support, it’s possible to navigate these uncertainties. Taking steps such as building a strong support network, staying informed about treatment options, and discussing your wishes with loved ones can provide a sense of empowerment and readiness. Remember, each person’s journey with Parkinson’s is unique, and by taking thoughtful steps today, you can better prepare for the road ahead and continue living life to the fullest.
Step by step My Aged Care (Support at Home)
“My Aged Care” is an Australian government initiative designed to help older Australians navigate the aged care system and access support services to help them live independently at home. Get information about accessing supports to help you with daily living when you are over 65, or if you are looking into care homes, ring 1800 200 422.
Step by step NDIS
The National Disability Insurance Scheme helps you fund the increased costs you incur with Parkinson’s. If you are under 64, check your eligibility and contact a Local Area Coordinator to help you with your application. Ring 1800 800 110 or download the Young Onset Parkinson’s Exchange App to help streamline your application process.
Women & Parkinson’s
While women are underrepresented in research, they make up about 48% of people living with Parkinson’s in Australia! They experience unique challenges due to hormonal changes impacting the effectiveness of their medications. Women with young onset Parkinson’s have successfully gotten pregnant and raised families.
Young Onset Parkinson’s
When Parkinson’s is diagnosed in your 20s to 50s it is referred to as young, or early onset Parkinson’s. However, in Australia we often include all people with Parkinson’s of working age due to the NDIS supports available at that stage of life. See the Young Onset Parkinson’s Exchange App and website to help you on your journey.
Young Onset Parkinson’s eXchange YouTube Playlist
For a range of videos on living well with Parkinson’s including relationships, exercise, diet, sleep and more… check out the Parkinson’s Australia YouTube channel.
Assembling a care team
Parkinson’s symptoms can be complex, so it is recommended to get a team of allied health professionals and specialists together. Look to GPs, OTs, PTs, Speech Pathologists, Parkinson’s Nurse Specialists, Podiatrists, Pharmacists, Dentists and Continence specialists, to name a few. They will be in it with you for the long haul, so don’t be afraid to find health professionals you get along with and can work with to manage your symptoms as they change over time.
Living with Parkinson’s involves managing a range of motor and non-motor symptoms that can affect various aspects of daily life. A multidisciplinary care team made up of health professionals brings specialists from different fields to provide comprehensive, individualised care.
Continence specialist
A continence specialist plays a crucial role in helping people living with Parkinson’s manage bladder and bowel issues. These specialists assess and treat incontinence, a common non-motor symptom. A range of government payments can assist with getting continence aids.
Dentist
Dentists, with their ability to tailor dental care plans to accommodate the specific needs of people with Parkinson’s, play a preventive role in managing the condition. While Parkinson’s symptoms can complicate dental care, oral diseases are largely preventable. Maintain good oral and dental hygiene with regular visits to the dentist.
Dietitian
Dietitians have an accredited degree in dietetics, are recognised by Medicare, the DVA, and many private health insurers, and can provide medical nutrition therapy. They help you create dietary plans and can teach you how diet and nutrition can improve your health and wellbeing. Nutritionists provide general dietary advice and promote healthy eating habits. However, nutritionists are not qualified to provide medical nutrition therapy like a dietitian is.
Friends, family & carers
Friends, family and carers are an integral part of your care team. Remaining socially connected is as important as exercise for maintaining your wellbeing when living with Parkinson’s. You can continue to do the activities you love, get support at appointments, and contribute to your community with their help.
Gastroenterologist
GI (gastrointestinal) symptoms are common in Parkinson’s and can significantly impact a person’s daily life. These symptoms arise from the involvement of the autonomic nervous system and can include constipation, difficulty swallowing (dysphagia), gastroparesis (delayed gastric emptying), and other digestive issues.
General Practitioner
A General Practitioner (GP) is crucial in managing Parkinson’s, especially in their role of coordinating care with other specialists on your care team. GPs provide primary care, monitor overall health, and facilitate coordinated care with specialists to optimise patient outcomes.
Geriatrician
A geriatrician who is also a movement disorder specialist is a physician who has dual expertise in both geriatrics and movement disorders. This specialised training allows them to provide comprehensive care for older adults who are affected by neurological conditions such as Parkinson’s and other movement disorders.
Mental health specialist
A mental health counsellor specialising in wellbeing is invaluable for your care team as there are complex emotional and psychological challenges associated with the condition. Parkinson’s impacts mental health, often leading to feelings of anxiety, depression, frustration, and uncertainty about the future. A counsellor provides a safe and supportive environment to address these emotions, offering coping strategies, stress management techniques, and tools for enhancing resilience. They help you navigate the emotional impact of PD, adjust to changes in lifestyle and relationships, and develop strategies for maintaining a positive outlook. By focusing on mental wellbeing, counsellors play a crucial role in empowering you to effectively manage your emotional health, enhance your overall wellbeing, and cultivate a sense of control and purpose in your life despite the challenges.
Movement disorder specialist
A movement disorder specialist is usually a neurologist or geriatrician who has undergone additional training and specialisation in diagnosing and treating movement disorders. Movement disorder specialists have expertise in distinguishing between different types of movement disorders, understanding their underlying causes, and developing your individualised treatment plans.
Neurologist
A medical doctor specialising in the diagnosis and treatment of disorders affecting the nervous system is called a neurologist. This includes treating conditions affecting the brain, spinal cord, nerves, and muscles. They are trained to evaluate your progression, medication responses and manage your symptoms through prescription medications.
Obstetrician-gynaecologist
An OB/GYN (obstetrician/gynaecologist) is a medical doctor specialising in women’s reproductive health, pregnancy, childbirth, and the female reproductive system. They provide comprehensive care, including routine gynaecological exams, prenatal care, childbirth assistance, and management of reproductive health issues including menstrual disorders, infertility, and menopause.
Occupational therapist
An Occupational Therapist (OT) helps you improve your ability to perform everyday activities and achieve independence despite physical, cognitive, or emotional challenges that come with PD. OTs assess your functional abilities, providing therapeutic interventions, and recommending adaptations or assistive devices to support optimal participation in meaningful activities at home, work, and in the community.
Ophthalmologist
An ophthalmologist specialises in the diagnosis, treatment, and management of disorders and diseases of the eye and visual system. These medical doctors perform eye examinations, prescribe corrective lenses, and diagnose and treat eye conditions such as cataracts, glaucoma, and macular degeneration. They may also perform surgical procedures to improve or restore vision.
Palliative care
Palliative care is not just for end-of-life patients; it can be a worthwhile addition to your care team. It is a compassionate team approach that enhances your comfort and quality of life while living with a life-limiting illness like Parkinson’s. It also supports pain management, spiritual care, and advanced care planning.
Parkinson’s nurse specialist
A Parkinson’s nurse specialist (PNS) is a dedicated professional with advanced training and expertise in managing your care and treatment. Their role is to empower you and your family with specialised nursing care, education, and support, helping to optimise symptom management, medication adherence, and overall quality of life throughout the progression of the condition.
Pharmacist
A pharmacist is a highly trained professional in the science of medication therapy. They ensure the safe and effective use of prescribed medications. They provide you with medication counselling, monitor for drug interactions and adverse effects, collaborate with your care team to optimise medication therapy and educate you on how to take your medications properly. Their expertise can provide you with a sense of security and confidence in your treatment plan.
Physiotherapist
A physiotherapist, or physical therapist, specialises in restoring and maintaining physical function and mobility. They assess, diagnose, and treat movement disorders and musculoskeletal conditions through exercise, manual therapy, education, and other therapeutic techniques to help patients improve their strength, flexibility, and overall quality of life.
Podiatrist
A podiatrist specialises in diagnosing, treating, and preventing foot, ankle, and lower leg conditions. They provide medical and surgical care for conditions such as bunions, heel pain, ingrown toenails, and diabetic foot care, aiming to promote mobility, relieve pain, and improve overall foot health.
Psychiatrist
A psychiatrist has trained as a medical doctor and can prescribe medication. They understand how your brain works and how you think and behave. They can use different types of counselling and psychotherapy to help you.
Psychologist
Psychologists cannot prescribe medication. They are trained to understand thinking, behaviour and how your brain works, but are not a medical doctor. However, they can use different types of counselling and psychotherapy to help you.
Speech pathologist
A speech pathologist assesses and treats communication challenges and swallowing disorders. They work with you to improve speech, language, cognition, voice, and swallowing abilities through therapeutic interventions and techniques tailored to your needs.
Urologist
A urologist is a medical doctor who specialises in diagnosing, treating, and managing the male reproductive system. They treat disorders of the urinary tract, conditions such as urinary tract infections (UTIs), kidney stones, prostate issues, erectile dysfunction, and urinary incontinence. They can suggest medical therapies, surgical interventions, and other specialised treatments.
Atypical Parkinson’s
Atypical Parkinson’s, Parkinson’s plus or atypical parkinsonisms are an umbrella term for a group of rare neurological disorders that share some symptoms with Parkinson’s disease but have distinct features and typically a more rapid progression. They also often do not respond well to standard Parkinson’s medications. These disorders include Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD), and Dementia with Lewy Bodies (DLB). Each condition has its own set of symptoms, which may include balance problems, stiffness, difficulty with movement, and cognitive changes. Diagnosing atypical parkinsonisms can be challenging and may require specialised testing and evaluation by a neurologist or movement disorder specialist familiar with these conditions. Treatment focuses on managing symptoms and improving quality of life, often involving a multidisciplinary approach tailored to individual needs.
Corticobasal Degeneration
CBD, also known as corticobasal syndrome, or corticobasal degeneration, is a rare neurological disorder that causes progressive damage to specific areas of the brain, including the cerebral cortex and the basal ganglia. These regions are responsible for various functions, such as movement, memory, and cognition. The condition typically leads to symptoms that may initially affect one side of the body but eventually progress to both sides.
Dystonia
Dystonia is characterised by involuntary muscle contractions that cause repetitive or twisting movements. The condition can affect one part of the body (focal dystonia), two or more adjacent parts (segmental dystonia), or all parts of the body (general dystonia). The muscle spasms can range from mild to severe and may be painful, interfering with daily tasks.
Essential Tremor
Essential tremor (ET) is a common neurological disorder characterised by involuntary shaking or trembling of parts of the body, typically the hands, arms, head, or voice. Unlike Parkinson’s tremors, ET occurs during voluntary movements and can worsen with stress or fatigue. It tends to run in families and often begins gradually, worsening over time. While not life-threatening, it can significantly affect daily activities such as writing, eating, or performing precise tasks. Treatment options include medications, lifestyle modifications, and in some cases, surgical interventions to manage symptoms and improve quality of life for those affected.
Dementia with Lewy Bodies and Lewy body dementia
“Dementia with Lewy bodies” (DLB) and “Lewy body dementia” (LBD) are often used interchangeably to refer to the same condition, but there can be some nuanced differences in how they are understood:
Lewy Body Dementia (LBD) is a broader term that encompasses both dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). PDD refers to dementia that develops in individuals with Parkinson’s disease over time. Therefore, LBD can refer to either DLB or PDD, depending on whether the dementia symptoms or the movement symptoms were predominant at the onset.
Dementia with Lewy Bodies (DLB) is a specific type of dementia characterised by the presence of Lewy bodies—abnormal deposits of alpha-synuclein protein—in the brain. It shares symptoms with both Parkinson’s (such as movement issues and tremors) and Alzheimer’s (such as memory loss and cognitive decline). DLB typically includes cognitive impairments that fluctuate, visual hallucinations, and disturbances in sleep and behaviour.
Parkinson’s disease dementia (PDD) is a type of dementia that occurs in individuals who have been living with Parkinson’s disease for some time. It is estimated that around 50-80% of people with Parkinson’s disease will eventually develop dementia. PDD is characterised by cognitive decline that goes beyond the mild cognitive impairment often seen in early Parkinson’s.
Multiple System Atrophy
MSA affects the body’s involuntary functions, such as blood pressure, heart rate, bladder function, and motor control or striatonigral degeneration. MSA shares many symptoms with Parkinson’s, including slow movement, rigid muscles, and poor balance. The symptoms of MSA typically begin in adulthood, usually in the 50s or 60s, and can be categorised into two types based on the most prominent symptoms at diagnosis:
- Parkinsonian type (MSA-P): Similar to Parkinson’s with symptoms like tremors, slow movement, and stiffness.
- Cerebellar type (MSA-C): Mainly affects muscle coordination, leading to an unsteady gait and loss of balance.
Progressive Supranuclear Palsy
PSP, also known as Steele-Richardson-Olszewski syndrome, is an uncommon brain disorder that causes serious problems with walking, balance, eye movements, and later with swallowing. It is a neurodegenerative condition that leads to the deterioration of brain cells, particularly in the midbrain and frontal lobe, which control movements and thinking.
Restless Leg Syndrome
RLS, also known as Willis-Ekbom disease, is a neurological condition that causes an uncontrollable urge to move the legs, typically due to uncomfortable sensations. It often occurs in the evening or nighttime hours when you’re sitting or lying down, and moving your legs can temporarily ease the unpleasant feeling.
REM Sleep Behaviour Disorder
REM Sleep Behaviour Disorder (RBD) is characterised by acting out dreams or moving a lot in the REM stage of sleep. About 80% of people diagnosed with RBD develop synuclein-related disorders such as Parkinson’s or other atypical parkinsonism at some point in their lives. More research is being done to understand the links.
Assistive technologies
When we talk about assistive technology, or AT, we mean equipment, technology and devices that help you do things you can’t do because of your Parkinson‘s. These can be things that help you do something more easily or safely and may include items that mean you need less help from others, allow you to continue to do tasks independently and have AT that are personalised for you. We recommend you consult with allied health professionals to get advice before you buy any AT to make sure it is right for you, helps you to achieve your goals and works in all the places you need to use it.
Carer-friendly workplaces
Equip your organisation with the knowledge it needs to become carer-inclusive and create a supportive environment for carers with the Carer Inclusive Workplace Initiative. Flexible work arrangements, templates for policies and other resources written by HR professionals and carers.
Constipation
Constipation management is a forever problem if you are living with Parkinson’s, due to the slowness (bradykinetic) symptoms resulting in slow GI movements. However, not all ‘normal’ constipation management strategies are recommended for people with Parkinson’s (PwP). Constipation management for PwP is more similar to bowel management for people with spinal cord injuries, as high fibre intake may exacerbate the problem. Slow bowels also impact the uptake of Parkinson’s medications. Consistency (Mr Whippy) and frequency (daily) are the main goals to achieve through exercise, diet, hydration and constipation medications (if needed).
Early intervention strategies
Intervening as early as possible can significantly impact Parkinson’s progression and improve your quality of life. It’s essential to work with your care team to develop a personalised plan. Strategies may include: medications, alternative and allied health therapies (e.g. PT, OT, Speech Pathology), lifestyle modifications including regular exercise, balanced diet, adequate sleep and hydration, stress management, social engagement and accessing supports.
Exercise
Exercise has been the only treatment shown to slow progression. Remember any movement is better than no movement, so do something you love to keep active. There are many free resources and videos you can find online. Please consult with your GP before starting an exercise program or see an exercise physiologist for a personalised plan.
FREE Exercise and Parkinson’s compilation of resources from our partner PD Avengers
YOPX App Exercise YouTube Playlist
Home safety
Creating a Parkinson’s-friendly environment requires thoughtful modifications that focus on enhancing the comfort, safety, and independence of those living with Parkinson’s. Read our Parkinson’s-friendly homes information sheet for more tips.
Hydration
Stay hydrated and stay healthy. Drinking at least eight glasses of water daily helps with medication uptake, high blood pressure and many other symptoms arising from Parkinson’s. Some people with Parkinson’s do not hydrate properly because of the loss of a sense of thirst and bladder control issues. This is because of the unusual messaging to the brain. However, if you forget or avoid water intake it will compound continence and other problems. Instead, see a urologist or continence specialist for some possible solutions and track the amount of water you drink over the day.
Mobility aids
Mobility aids can be invaluable tools for individuals living with Parkinson’s, helping to maintain independence and enhance quality of life. As Parkinson’s progresses, mobility can become challenging due to progression of symptoms like tremors, rigidity, and balance issues. Mobility aids such as canes, walkers, and wheelchairs provide stability and support, reducing the risk of falls and allowing individuals to move around more confidently. Choosing the right mobility aid depends on individual needs and preferences, and advice from occupational therapists to ensure they are properly fitted and used correctly.
Oral health & dental tips
While Parkinson‘s symptoms can complicate dental care, oral diseases are largely preventable. People with Parkinson’s can maintain good dental hygiene with regular visits to the dentist and appropriate occupational therapy advice. It’s crucial that your dentist is fully informed about any Parkinson’s symptoms, medications, and treatments that could impact your visit. This understanding is key to ensuring you receive the best possible care.
Parkinson’s-friendly workplaces
Parkinson’s-friendly workplaces are environments designed to support your ability to continue work. They typically offer flexible work arrangements with accommodations and adjustments tailored to your needs. Examples may include ergonomic workstations that reduce physical strain, flexible work schedules to accommodate fluctuating symptoms or medical appointments, and accessible facilities such as grab bars and accessible restrooms. Supportive workplace policies may also include awareness training for colleagues and supervisors about Parkinson’s symptoms and challenges, as well as policies that promote inclusivity and understanding. By creating Parkinson’s-friendly workplaces, employers not only support the well-being and productivity of employees with Parkinson’s but also foster an inclusive and supportive work environment for all staff members.
Personal care
Personal care tasks can be increasingly challenging for people living with Parkinson’s, but there are empowering strategies to manage daily tasks effectively. Activities like bathing, dressing, brushing your teeth, and grooming more difficult. However, by adopting adaptive techniques and using assistive technologies devices such as grab bars, electric toothbrushes, dressing aids, and specialised utensils, you can maintain independence and dignity. Establishing a routine and breaking tasks into smaller, manageable steps can also help conserve energy and reduce frustration. Seek support from occupational therapists, who can provide personalised strategies and recommendations. Remember, managing personal care with Parkinson’s is about finding what works best for your symptoms and embracing solutions that empower you.
Pregnancy
Pregnancy and Parkinson’s present a unique intersection in medical understanding, as Parkinson’s typically affects older adults, while pregnancy occurs during a woman’s reproductive years. Due to the rarity of early or young onset Parkinson’s in women of childbearing age, research on the specific effects of pregnancy on Parkinson’s progression or vice versa is limited.
Sleep issues
Sleep disturbances are common in Parkinson’s and can significantly impact your overall health and symptom severity. Individuals with Parkinson’s often experience a variety of sleep-related issues. The underlying causes are multifactorial and can include medication side effects, changes in brain chemistry affecting sleep regulation, and motor symptoms such as tremors or muscle stiffness that interfere with comfort. Good sleep hygiene, investigating and optimising your medications, and exercising are just some ways to manage sleep issues. It’s crucial for individuals with Parkinson’s and their caregivers to discuss any sleep concerns with healthcare providers. Addressing sleep issues not only improves quality of life but also may help manage other aspects of Parkinson’s disease more effectively.
Technology
Various technological advancements have been developed to assist in managing symptoms, enhancing mobility, and providing support. From wearables, to apps, trackers, voice assistants, tele-health appointments and lasers to cue for freezing, there are an abundance of technological aids that can help you maintain your independence and live better with Parkinson’s.
Time management
Time management can be particularly challenging for people living with Parkinson’s due to symptoms such as changed executive function, slowed movement, stiffness, and fatigue. There are a range of strategies and adapting them to your individual needs, you can better manage your time and daily activities. Interventions such as occupational therapy, time-management tools, and structured routines can help streamline tasks and enhance productivity.
Travelling tips
Travelling with Parkinson’s can have its challenges, but with planning and plenty of time, travel is more than possible! Planning ahead, considering accessibility, and communicating your needs can make exploring the world an enriching experience. Many people with Parkinson’s continue to embark on exciting journeys by booking tickets directly with airlines’ disability lines, using companion cards, and requesting invisible disability lanyards for priority assistance. Be sure to pack extra meds, have a letter from your doctor with a list of medications needed for your diagnosis.
Exciting possibilities are emerging in the field of Parkinson’s treatment. New drug therapies are being tested for their potential to protect neurons and slow progression. Gene therapy and stem cell research, on the other hand, offer promising avenues for regenerating damaged brain cells and restoring lost functions. These developments are a testament to the innovative spirit driving Parkinson’s research.
Deep Brain Stimulation (DBS)
While DBS isn’t recommended for everyone with Parkinson’s, it is a procedure that works for some motor symptoms once medications are no longer effective. Speak to your neurologist and care team to discuss your options, the procedure and any risks or side effects.
Foot care
Seeing a podiatrist can help you manage pain, get medical pedicures to maintain your toenails and overall foot health, and get tips for managing gait changes and best footwear for how you walk.
Medications Used in the Treatment of Parkinson’s (DL Tri-Fold)
Medications for Parkinson’s, such as dopamine replacement (levodopa), dopamine agonists, MAO-B inhibitors, and COMT inhibitors, can help manage some motor and non-motor symptoms. Working through optimising the medications you are on with your care team is important. Most medications work best when taken with a full glass of water to help uptake, being mindful of any interactions, and taking them at the same time, every time.
Medications to be used with Caution for People with Parkinson’s (A5 Booklet – for Health Professionals)
Medications for Parkinson’s can interact with various other drugs, leading to potential side effects or reduced efficacy. Always consult your care team before starting or stopping any medication to manage potential interactions effectively. Your pharmacist can conduct an HMR if requested to discuss all medications and supplements you take.
Mental wellbeing
You may be experiencing days where everyday activities feel too difficult. Often the invisible symptoms of Parkinson’s are unexplained apathy, anxiety and depression. These can have a huge impact of daily life and overall wellbeing.
Occupational therapy
Accessing an occupational therapist (OT) can significantly enhance the quality of life for someone living with Parkinson’s. Occupational therapists specialise in helping people participate in daily activities (also referred to as ‘occupations‘) that are meaningful and necessary for their everyday lives.
Oral health
People with Parkinson’s often face several dental and oral health challenges due to symptoms like tremors and rigidity, as well as side effects from medications. These issues include dry mouth, which increases the risk of cavities, gum disease, and difficulty swallowing, which can lead to choking hazards. Additionally, reduced muscle control can cause excessive drooling and make it hard to maintain proper dental hygiene, leading to poor oral health. Managing dentures can also be problematic due to dry mouth and changes in muscle control, affecting their fit and comfort. Regular dental check-ups and tailored oral hygiene practices are essential to address these challenges effectively.
Physiotherapy
Overall, physiotherapy is an essential part of managing Parkinson’s, helping to improve your quality of life and maintain your independence for as long as possible. From balance and mobility, strength and flexibility, or pain management tips, physiotherapists can help you with exercises and strategies across these areas.
Speech pathology
Speech pathologists provide assessment and therapy for communication changes. This can include individual or group-based therapy programs, e.g. the Lee Silverman Voice Treatment (LSVT LOUD), the Parkinson’s Voice Project, – SPEAK OUT! online voice training, and singing (ParkinSong). Speech pathologists can also work with you on other communication changes, as well as provide strategies and training for your communication partners. Explore options that suit your preferences and specific needs with a speech pathologist.
Being a young carer
Children and young adults aged 5 to 25 are considered young carers if they live with or provide care for someone that has Parkinson’s. There are supports like the Young Carer Network, Young Carer Bursary and support groups specifically tailored to their age groups. Find out more through Carers Australia and register them on the Carer Gateway.
Caring for someone with Parkinson’s
Caring for someone with Parkinson’s isn’t always easy. Some people that provide support may not even consider themselves a carer. Partners, friends, family, and kids can all be classified as carers and there are a range of supports they can access to help maintain their wellbeing as well as that of their loved one.
Communication
Parkinson’s symptoms can bring about changes in communication affecting speech, voice, thinking speed, language, handwriting, body language and facial expressions. Understanding these challenges, for you and those around you, is the first step toward developing alternative strategies that empower you to maintain communication.
Parenting with young onset Parkinson’s
Parenting can be challenging at the best of times, but parenting with young onset Parkinson’s and trying to manage your own wellbeing needs can add a lot of stress, both emotionally and physically. Know that you are not alone in this and that there are many supports for you, your spouse or partner and your children.
Relationships
Friendships, family, romantic, and workplace relationships may be affected by Parkinson’s decades prior to a formal diagnosis due to early changes in mood and motivation. As Parkinson’s progresses, more changes can occur due to medication side effects or the condition progression itself. Support starts with patience, being there, having awareness of the condition and being able advocate for the person with Parkinson’s. Click the link for our YouTube Relationships video playlist.
Early warning signs
Prodromal signs of Parkinson’s disease can significantly impact daily life, as these early symptoms can appear years before the more recognisable motor symptoms. These include loss of, or reduced, sense of smell, changes to handwriting, changes to sleep like restless leg syndrome or REM sleep behaviour disorder, constipation and unexplained mood disorders such as anxiety, apathy, and depression. Understanding the potential symptoms attributable to Parkinson’s can lead to early diagnosis and treatment.
Parkinson’s symptoms
Living with Parkinson’s involves understanding how to manage your symptoms effectively and which treatments, medications and lifestyle changes can help you maintain a good quality of life. Parkinson’s affects both motor and non-motor functions; everyone experiences it differently. They like to say if you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s, so resist the urge to compare your situation with others!
Motor symptoms (movement)
Motor symptoms are a hallmark of Parkinson’s, significantly impacting movement and daily activities. You may experience tremors, bradykinesia (slowness of movement), muscle rigidity (stiffness), postural instability, and episodes of freezing. Understanding and managing these symptoms through medications, physical and occupational therapy, and sometimes surgical interventions can greatly enhance your quality of life.
Bradykinesia (slowness)
Bradykinesia, or slow movement, is a core motor symptom of Parkinson’s. It gradually reduces spontaneous movement, making everyday tasks like buttoning a shirt or walking more challenging. This symptom can significantly impact a person’s quality of life, often leading to difficulties initiating and completing movements. Managing bradykinesia involves a combination of dopaminergic medications, which help replenish dopamine levels, and physical therapy to maintain mobility and function.
Dyskinesia
Dyskinesia refers to involuntary, erratic, and often excessive movements that can occur in individuals with Parkinson’s, typically as a side effect of long-term use of dopaminergic medications like levodopa. These movements can range from mild to severe and may affect various body parts, including the arms, legs, and face. While dyskinesia can be disruptive and uncomfortable, adjusting medication regimens and incorporating other treatments can help manage these symptoms.
Dystonia
Dystonia is characterised by involuntary muscle contractions that cause repetitive or twisting movements. The condition can affect one part of the body (focal dystonia), two or more adjacent parts (segmental dystonia), or all parts of the body (general dystonia). The muscle spasms can range from mild to severe and may be painful, interfering with daily tasks.
Falls
Falls can be associated with Parkinson’s due to a range of symptoms. Taking small or varying steps can lead to instability. When arms don’t swing during walking, balance is affected. Side effects of some Parkinson’s medications can cause dyskinesia, impacting balance. As Parkinson’s progresses, stooped posture and rigid muscles increase fall risk. Reduced activity weakens muscles and raises the risk of falling. Some Parkinson’s medications affect blood pressure, leading to dizziness and falls. Managing falls involves addressing muscle stiffness, mobility, and balance issues. It’s always best to discuss any concerns with your care team.
Festination
Festination, or shuffling gait, is a common motor symptom in Parkinson’s. You may experience short, rapid steps that propel you forward, often resulting in a stooped posture. This gait pattern occurs because your centre of gravity is too far forward, causing you to take quick, shuffling steps to avoid falling. Festination can make walking difficult and increase the risk of falls. Management strategies include physical therapy, gait training, and optimising your medications to improve mobility and safety.
Freezing
Freezing of gait (FOG), where you temporarily lose the ability to move your feet, feeling as if they are glued to the ground, can be a challenging and common symptom of Parkinson’s. This phenomenon often occurs during walking, particularly when starting to move, turning, or navigating through narrow spaces. Episodes can last from a few seconds to several minutes and significantly increase the risk of falls. Management strategies include optimising medication regimens, using visual or auditory cues to start movement, and physical therapy to improve gait and balance.
Gait disturbances
Gait disturbances are common in Parkinson’s. Small, shuffling steps characterised by reduced stride length and walking speed is known as Parkinsonian gait. You may also experience festination, where steps become quicker and shorter, and freezing of gait, a sudden inability to move the feet forward. The good news is, there is a wide range of treatments that can help with gait disturbances, offering hope and reassurance.
Masked face aka hypomimia
People with Parkinson’s often exhibit masked facial features, a condition known as hypomimia. Without sufficient dopamine, the muscles, including those in the face, become rigid and slow to respond. It may result in loss of facial expression and impact non-verbal communication cues. It can help to regularly perform facial exercises to maintain muscle tone and improve responsiveness, work with a speech pathologist, and optimise Parkinson’s medications to improve dopamine levels and muscle control. Be mindful of emotions and consciously express them through facial movements.
Micrographia
Micrographia, a common early symptom of Parkinson’s, is characterised by abnormally small and cramped handwriting. You may struggle with everyday tasks that require writing, such as filling out forms or signing documents. Managing micrographia involves a combination of strategies, including handwriting training to improve motor skills and assistive devices like larger, weighted pens or digital tools. Regular practice and personalised management plans developed with your care team can help you cope with this challenging symptom.
Postural instability
Postural instability in Parkinson’s refers to difficulty maintaining balance and stability, making you more prone to falls. This symptom often appears in the later stages of the disease and is characterised by unsteadiness when standing, walking, or making sudden movements. You may exhibit a stooped posture, small shuffling steps, and a tendency to lean forward while walking. The risk of falls increases significantly, which can lead to injuries. However, there is hope. Managing postural instability involves effective physical therapy, exercise, and home safety modifications to reduce fall risks, empowering you to take control of your condition.
Rigidity (muscle stiffness)
Rigidity in Parkinson’s disease is a primary motor symptom characterised by muscle stiffness and resistance to movement. Rigidity can affect your arms, legs, and trunk. This stiffness goes beyond what would be expected from normal aging or arthritis and can lead to a decreased range of motion. There are two main types of rigidity: lead-pipe rigidity, where the resistance is constant throughout the movement, and cogwheel rigidity, where the resistance is intermittent, creating a ratchet-like effect. Rigidity can cause discomfort, pain, and difficulties with everyday activities, such as walking, dressing, and writing.
Slowed blink rate
It’s important to note that a reduced frequency of blinking is common with Parkinson’s. The normal blink rate is about 15 to 20 times per minute, but people with Parkinson’s may blink significantly less, sometimes only 3 to 4 times per minute. This reduced blink rate can lead to dry eyes, discomfort, and vision problems. Blinking helps spread tears across your eye’s surface, keeping it moist and clear. Managing this symptom involves using artificial tears and consciously blinking more frequently.
Tremor
Tremor, a primary symptom of Parkinson’s, manifests as an uncontrollable movement that affects a part of the body. It occurs in around 80% of people with Parkinson’s. Parkinson’s tremor often starts on one side of the body and can appear at rest (like a ‘pill-rolling’ motion) or during action (such as holding a magazine). Some people may also experience internal tremors. Medication may help control it, and assistive technology can help minimise the impacts on daily life.
Non-motor symptoms (autonomic)
Parkinson’s also presents a range of non-motor symptoms that may be more impactful than the motor symptoms. Memory problems, difficulty concentrating, and slowed thinking are common cognitive symptoms. Autonomic symptoms, which involve the body’s automatic functions, can include issues like constipation, urinary problems, and blood pressure fluctuations. Understanding these non-motor symptoms is crucial for managing Parkinson’s.
Anxiety
Anxiety is a common symptom of Parkinson’s due to changes in brain chemistry. The reduction in dopamine levels can lead to chemical imbalances in the brain, which contribute to anxiety. The stress of living with a chronic condition and the motor and non-motor symptoms of Parkinson’s can exacerbate feelings of anxiety. This combination of neurological and psychological factors makes anxiety a prevalent non-motor symptom in people with Parkinson’s. However, anxiety is manageable with medication, exercise, and therapy to maintain mental wellbeing.
Apathy
Apathy is a common non-motor symptom of Parkinson’s, characterised by a lack of interest, enthusiasm, or motivation. Losing interest in new activities, lacking emotional response to situations, and difficulty initiating or completing tasks are common manifestations of apathy. Unlike depression, which involves feelings of sadness and guilt, apathy is an emotional flatness and a general disinterest in life. You may feel less inclined to exercise, follow medication schedules, or engage in social activities, which can worsen symptoms. Apathy in Parkinson’s can be challenging, but there are strategies to manage it. Stay engaged socially, exercise, and optimise medications and treatments.
Bladder control
Bladder control challenges are common in Parkinson’s, ranging from urinary urgency, having little warning that you need to pass urine, urinary frequency, desiring to pass urine often, usually only passing a small amount at a time, and urinary retention, not being able to completely empty the bladder, to nocturia, waking more than once during main sleep time to pass urine. Manage these issues by staying hydrated and balancing fluid intake to avoid urgency without dehydration. Pelvic floor exercises can strengthen pelvic muscles to improve control. Always consult a continence specialist to seek advice on medications or lifestyle adjustments.
Constipation
Constipation, a prevalent issue affecting 80-90% of people with Parkinson’s, is a result of the impact on the autonomic nervous system. This system, responsible for regulating smooth muscle activity in the gut, experiences disruption, leading to a slowdown in the movement of food through the GI (digestive) tract. Understanding this cause can help manage the symptoms of constipation in Parkinson’s, which include infrequent and difficult bowel movements, straining during bowel movements, hard or pellet-like stools, and a feeling of incomplete evacuation.
Delusions
Delusions in Parkinson’s, false beliefs that are not grounded in reality, can cause significant distress. These delusions can manifest as irrational thoughts, such as believing that someone is plotting against them or that their partner is unfaithful despite no evidence. They are typically a part of Parkinson’s psychosis and are triggered by the progression of the disease, side effects of medications, or coexisting conditions like dementia. Managing these delusions involves consulting specialists to adjust medications or introduce treatments specifically designed for people living with Parkinson’s. This comprehensive approach aims to improve the quality of life for both you and your families, as this symptom can be very distressing for all.
Dementia (Parkinson’s disease dementia)
Parkinson’s disease dementia (PDD) is a condition that affects some people with Parkinson’s. It involves significant changes in thinking and behaviour that develop after the onset of motor symptoms like tremors, stiffness, and slow movements. PDD can lead to memory difficulties, problem-solving and attention issues, and behavioural changes such as apathy, delusions, and hallucinations. This condition typically emerges many years after the initial diagnosis of Parkinson’s. Treatment strategies focus on improving symptoms through medications and lifestyle changes.
Dental & oral health
People with Parkinson’s often face several dental and oral health challenges due to symptoms like tremors and rigidity, as well as side effects from medications. These issues include dry mouth, which increases the risk of cavities, gum disease, and difficulty swallowing, which can lead to choking hazards. Additionally, reduced muscle control can cause excessive drooling and make it hard to maintain proper dental hygiene, leading to poor oral health. Managing dentures can also be problematic due to dry mouth and changes in muscle control, affecting their fit and comfort. Regular dental check-ups and tailored oral hygiene practices are essential to address these challenges effectively.
Depression
Depression, a common symptom of Parkinson’s, affects up to 50% of people with the condition. It’s not just a reaction to the diagnosis or the challenges of living with Parkinson’s, but a direct result of changes in brain chemicals that regulate mood, energy, motivation, appetite, and sleep. You may experience persistent feelings of sadness or a loss of interest in activities that used to bring you joy. Understanding that these changes in brain chemistry are the root cause of depression can help you stay proactive with advice from your care team and mental health supports.
Drooling
Drooling in Parkinson’s, also known as sialorrhea, occurs primarily due to difficulties with swallowing. Parkinson’s affects the muscles involved in swallowing, reducing the frequency and efficiency of this automatic action. As a result, saliva tends to pool in the mouth instead of being swallowed regularly. It’s important to understand that muscle rigidity and bradykinesia (slowness of movement) play a significant role in drooling, making it harder to keep the mouth closed. While the amount of saliva produced is typically normal, the impaired ability to manage it leads to excessive drooling. Consult with a speech pathologist or dental specialist for treatment options.
Dysarthria (changes to speech)
Dysarthria in Parkinson’s is a motor speech disorder caused by weakened muscles used for speaking. This condition affects nearly 90% of individuals with Parkinson’s. Symptoms include reduced vocal loudness, a monotonous tone, imprecise articulation of consonants and vowels, and a breathy or hoarse voice. These changes also lead to slower, softer, and sometimes slurred speech. Managing dysarthria often involves speech pathology to improve communication and maintain social interactions.
Dysautonomia (changes to automatic functions)
Dysautonomia in Parkinson’s refers to the autonomic nervous system dysfunction, which controls involuntary bodily functions. Heart rate, blood pressure, digestion, constipation, urinary incontinence, excessive sweating, sexual dysfunction and temperature regulation may occur years before motor symptoms. Managing dysautonomia often involves a combination of lifestyle changes, medications, and other treatments.
Fatigue
Fatigue is a prevalent and often debilitating symptom of Parkinson’s, affecting up to half of those diagnosed. It is an overwhelming sense of tiredness that is not necessarily relieved by rest and can significantly impact daily activities. The exact cause of fatigue in Parkinson’s involves neurodegenerative processes and the side effects of medications. Managing fatigue includes optimising medication regimens, incorporating regular physical activity, ensuring adequate sleep, and addressing any coexisting conditions such as depression or sleep disorders.
GI issues
GI issues arise because the autonomic nervous system, which controls automatic bodily functions, is compromised in Parkinson’s, disrupting digestive processes. The most common problem is constipation. Other symptoms include gastroparesis, or delayed gastric emptying, which results in bloating, nausea, and early satiety; dysphagia, or difficulty swallowing; and sialorrhea, or excessive saliva production. Additionally, you may experience bloating and abdominal discomfort due to the slowed movement of food through the digestive tract. Managing these symptoms involves dietary adjustments, medications, and the empowering role of lifestyle changes, along with professional guidance, to improve quality of life.
Hallucinations
Hallucinations can be a symptom of Parkinson’s, particularly in its later stages. These hallucinations are often visual but involve other senses like hearing or touch. They result from changes in the brain due to Parkinson’s, particularly in the regions involved in the perception and processing of sensory information. Hallucinations in Parkinson’s can be treated and managed with medications, counselling and support from your care team.
Hyperhydrosis (excessive sweating)
Parkinson’s can cause excessive sweating, a condition known as hyperhidrosis. People with Parkinson’s may experience sudden, profuse sweating, especially in the upper body and face. This can be pretty uncomfortable and may require frequent changes of clothing. Managing this symptom involves adjusting medications and using strategies to stay cool.
Hypotension (low blood pressure)
Low blood pressure (also known as hypotension) can occur in Parkinson’s. Lightheadedness, dizziness, and fainting are common. You might experience weakness, blurred vision, or confusion. Shoulder or neck pain, trembling, and cold hands/feet can also occur. Management of hypotension should include drinking enough water to help regulate blood pressure. Prevent constipation, which can worsen symptoms. Avoid sudden movements; get up slowly from chairs and bed. Remember, your care team, including your GP, is here to help. They can recommend treatments to ease symptoms and provide the necessary support.
Impulse control disorders
Impulse control disorders (ICDs) in Parkinson’s are the inability to resist intense urges that lead to repetitive, potentially harmful behaviours. Common ICDs include pathological gambling, hypersexuality, compulsive shopping, binge eating, and compulsive hobbyism. These behaviours are often linked to the use of dopamine agonist medications, which are commonly prescribed to manage motor symptoms of Parkinson’s. Effective management typically involves adjusting medicines under medical supervision, providing behavioural therapies to enhance impulse control, and educating both you and your caregivers about recognising and managing these challenging symptoms, as your support is crucial in this journey.
Loss of executive function
Loss of executive function refers to changes in cognitive processes essential for planning, organising, problem-solving, and regulating behaviour to achieve goals. You may find it challenging to initiate, switch between, or complete tasks efficiently. Memory functions may also affect your recall of information needed for immediate tasks. This can significantly impact daily life, work performance, and interpersonal relationships. In these moments, it’s important to remember that you’re not alone. Effective support and coping strategies are available to help you manage these challenges, providing reassurance and a sense of support.
Loss of sense of smell
Loss of smell, known as anosmia or a reduced sense of smell (hyposmia), is a common and early symptom of Parkinson’s. Profoundly affecting your ability to detect and recognise odours, it may impact nutritional habits, enjoyment of food, and changes in appetite. It also poses safety risks, as you may struggle to detect hazards such as spoiled food or gas leaks. Psychosocially, scent is linked to memories and emotional connections. Managing changes to your sense of smell requires adaptive strategies to enhance safety, maintain nutrition, and address emotional and social implications.
Mild cognitive impairment
Mild cognitive impairment (MCI) in Parkinson’s refers to a stage where you experience noticeable cognitive changes beyond what is expected due to normal aging but do not yet meet the criteria for dementia. Common symptoms include difficulties with memory, attention, and executive function, such as planning and problem-solving. It can impact daily activities, work performance, and social interactions. You might experience forgetfulness, trouble finding words, or challenges in completing tasks that require complex thinking. While you may still be able to manage independently in most areas of life, these cognitive changes can be concerning and require careful monitoring by your care team.
Pain
Types of pain associated with Parkinson’s include muscle pain, dystonia, radicular (shooting) pain and neuropathy. Unexplained pain is a common symptom in young onset, starting with the shoulder, elbow or hip. Musculoskeletal (muscle) pain is common and related to Parkinson’s rigidity and reduced joint movement. It often feels like an ache or in the neck and back but can affect any body part. Dystonia spasms can be severe and impact areas like toes, fingers, ankles, or wrists. Radicular (shooting) pain is sharp, shock-like pain that travels down the arm or leg. Tingling and numbness are also common. Peripheral neuropathy may also cause burning sensations or tingling. Treatment options are limited, but minimising “off” periods, painkillers and gentle physical activity, along with medication adjustments, behaviour change techniques, pain education, relaxation methods, and complementary therapies like acupuncture, are also used to manage pain.
Peripheral neuropathy
Peripheral neuropathy in Parkinson’s refers to damage or dysfunction of the peripheral nerves. The changes to nerves outside the brain and spinal cord can lead to various symptoms, including numbness, tingling, burning sensations, and weakness in the hands, feet, arms, or legs. In Parkinson’s, peripheral neuropathy may relate to factors such as aging, diabetes (which is more prevalent in individuals with Parkinson’s), or side effects of medications used to treat Parkinson’s.
Skin issues
A common and chronic inflammatory skin condition primarily affecting areas rich in sebaceous (oil-producing) glands is referred to as seborrheic dermatitis. Red, itchy, and flaky patches on the scalp, face (particularly around the eyebrows, eyelids, and nasolabial folds), ears, and upper chest can often be managed effectively with topical treatments such as antifungal creams, corticosteroids, or medicated shampoos. Sometimes, lifestyle modifications and regular skincare routines can help you control symptoms and reduce flare-ups.
Sexual dysfunction
Sexual dysfunction in Parkinson’s encompasses a range of issues that can significantly impact intimate relationships and, importantly, your overall quality of life. For men, common problems include erectile dysfunction, difficulty achieving or maintaining an erection due to decreased blood flow or side effects of medications used to manage symptoms. Women may experience reduced libido, difficulty reaching orgasm, or discomfort during intercourse, often related to changes in hormone levels, medication effects, or physical symptoms such as muscle stiffness. You may also face challenges related to intimacy and communication, emotional and psychological aspects of living with a chronic condition. Addressing sexual dysfunction in PD requires a collaborative approach involving your care team, who specialise in neurology, urology, gynaecology, and sexual health.
Sleep issues
A combination of factors, including changes in the brain’s neurotransmitter systems, medication side effects, motor symptoms disrupting sleep patterns, and the presence of other coexisting conditions such as depression or anxiety cause sleep disturbances. These disturbances can include difficulty falling asleep, frequently waking up during the night, insomnia, nocturia, restless legs syndrome, and rapid eye movement (REM) sleep behaviour disorder. Proper management involves a comprehensive approach that may include adjusting medications, addressing motor symptoms that interfere with sleep, treating coexisting conditions, and practising good sleep hygiene.
Swallowing
Swallowing difficulties, known as dysphagia, are a common non-motor symptom of Parkinson’s disease. These issues can arise due to the reduced control over muscles in the mouth and throat and affect the ability to chew and swallow food and liquid safely. Symptoms to look out for include drooling, difficulty clearing food from the mouth, food sticking in the throat, a gurgly voice, coughing or choking when eating or drinking, and discomfort in the chest or throat. Adjusting Parkinson’s medication can sometimes help manage dysphagia by improving muscle control. Work with a speech-language pathologist in your care team early for tips, helpful exercises and dietary adjustments.
Temperature control
Regulating body temperature can be a significant challenge for individuals with Parkinson’s disease (PD). This difficulty is due to the impairment of the autonomic nervous system, which is responsible for controlling automatic body functions, including temperature regulation. In PD, the hypothalamus and the autonomic nervous system can be affected, leading to temperature dysregulation. This can make you feel too hot or too cold, or sweat too little or too much. Wear layers, talk to your care team about how to manage these symptoms and stay hydrated.
Urinary incontinence
Urinary incontinence in Parkinson’s can arise from multiple factors related to both the condition itself and its treatments. The neurological changes can disrupt the coordination between the brain and the bladder. Medications commonly used to manage symptoms, such as anticholinergics or dopaminergic therapies, may also contribute to bladder control issues. Additionally, stiffness and slow movement can make it challenging for you to reach the restroom in time. Pelvic floor dysfunction, possibly worsened by reduced physical activity or age-related changes, can further contribute to urinary incontinence. Addressing these factors typically involves a holistic approach, including medication adjustments, pelvic floor exercises, behavioural therapies, and managing coexisting conditions like urinary tract infections to improve bladder control.
Urinary urgency
Urinary urgency refers to a compelling and sudden need to urinate that can be difficult to control. This symptom arises from disruptions in the neurological pathways regulating bladder function. Parkinson’s affects the brain’s ability to correctly signal when the bladder is full or needs to be emptied, leading to an exaggerated sensation of urgency even when it may not be full. Additionally, medications used to manage Parkinson’s symptoms can sometimes exacerbate bladder symptoms, increasing urgency. Urinary urgency can significantly impact your daily life, causing discomfort, anxiety, and challenges in managing social situations. Managing urinary urgency involves strategies such as timed voiding schedules, pelvic floor exercises to improve bladder control, lifestyle modifications like fluid management, and occasionally medications to reduce bladder spasms or urgency sensations.
Voice
Voice changes in Parkinson’s can be an early symptom. You might experience a softer voice, monotone pitch, or a hoarse voice, often because PD affects the muscles that produce speech. These symptoms may be subtle initially, but the changes progress and become more pronounced over time. You may not notice these changes, but friends, family and colleagues may ask you to repeat yourself or speak up. A speech pathologist can provide specialised therapy to improve or maintain vocal strength and clarity and suggest assistive technologies to help. Some medications can help improve muscle control and speech function in PD patients.
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Frequently asked questions
Living with Parkinson’s is a profoundly personal experience shaped by individual choices and circumstances. Each person’s journey is unique, with symptoms and progression varying widely.
While there are common things observed among those living with PD, the trajectory of the condition is highly unpredictable. No one, not even your healthcare provider, can foresee precisely which symptoms you’ll encounter, when they arise, how they progress or their severity. Remember, your path is yours alone, and your experience may differ greatly from others. Here are some frequently asked questions about Parkinson’s causes, symptoms, pathophysiology, genetics and the stages.
Parkinson’s disease (PD) is a whole body, progressive, neurodegenerative condition that affects mood, movement, GI tract, vision, sleep, memory and thinking. There are over 40 different symptoms that people with Parkinson’s can experience, though each person has a different combination of some, but not all, of them. The most recognisable symptoms are tremor (shaking), muscle rigidity (stiffness), bradykinesia (slowness of movement) and postural instability (balance issues and falls).
The nature and severity of symptoms can vary considerably from one individual to another, as well as from day to day. In the early stages of the condition, symptoms can be vague and non-specific such as constipation, loss of smell, fatigue, sleep disturbances, unexplained depression, anxiety or muscle pain. Generally, you must have at bradykinesia plus another key motor symptom like tremor for a diagnosis of Parkinson’s to be considered by a health care professional. However, it is worth noting that in 30% of cases a resting tremor will not be present.
Start building your understanding by looking at our top ten tips. You can also look to peak body podcasts and webinars from around the world, like those from The Michael J. Fox Foundation, Davis Phinney Foundation, Brian Grant Foundation, the Parkinson’s Foundation, Parkinson’s UK and more. Just make your sources are highly regarded and presenting reputable scientific facts.
Early symptoms of Parkinson’s often seem unrelated and can happen decades prior to motor symptoms appearing. The top ten include:
- Changes to mood and motivation including unexplained depression, anxiety and apathy
- Changes to handwriting, i.e. micrographia, often noticed when signing things your words get smaller and illegible
- Changes to sense of smell, with diminished ability to smell foods like liquorice, bananas and dill pickles, or loss of sense of smell altogether
- Changes to sleep patterns, often insomnia, restless leg syndrome and more commonly REM sleep behaviour disorder resulting in moving and calling out in your sleep due to vivid dreams
- GI issues like urinary urgency, frequency and continence issues as well as chronic constipation (less than one bowel movement per day)
- Unexplained pain, often in the shoulder, back or hip that is not resolved by physiotherapy or other treatments
- Slower blink rate and loss of facial expression with people thinking you are disinterested in what they are saying, or a staring blank look to the face
- Changes to your voice volume, even though you think you are speaking loud enough, people ask you to speak up
- Dizziness or fainting often from a sitting to standing position
- Changes to walking and movement due to increased stiffness and slowness, you may notice on one side you are dragging your foot more (check for uneven shoe wear on the soles) or your arm stops swinging.
While some of these may occur singularly and/or due to other changes in your life, once they are combined they warrant further investigation by your treating health professional.
There are several theories on what causes Parkinson’s; however, currently we do not have a clear picture of what triggers this dying off process and why some people are affected, and others are not. Best knowledge to date says it is a combination of head trauma, family history, pharmaceutical and/or environmental toxins like pesticides that trigger onset of parkinsonian symptoms. Being male and of older age also are risk factors.
What we do know is that every person with Parkinson’s experiences a loss of dopamine in the brain, along with which combination of symptoms and their progression that is unique to them.
Parkinson’s is a neurological condition that affects movement, mood, sleep, voice, vision and the gastrointestinal system. Pathophysiology is defined as the functional changes that accompany a particular syndrome or disease. The pathophysiology of Parkinson’s is complex and involves multiple chemical messengers (neurotransmitters), resulting in many changes to a person’s normal functioning and everyday life.
To understand Parkinson’s, we first need to understand dopamine. Dopamine acts as a messenger (neurotransmitter) in our brains, helping to control and coordinate our movements and our mood. It’s like the conductor of a symphony, ensuring everything flows smoothly. While dopaminergic pathways in Parkinson’s are most talked about, this neurodegeneration occurs within a number of other brain regions and other neurotransmitters too.
In Parkinson’s, something goes awry with dopamine. The cells in a specific part of the brain, called the substantia nigra, start to deteriorate and die off. These cells are responsible for producing dopamine, along with some in your gut. As the cells decline, they make less dopamine available to carry out its crucial role of sending messages from your brain to your body (kind of like a diabetic not producing enough insulin).
Scientists are still unraveling the full story, but genetics, environmental factors, and aging all seem to play a role in triggering the changes that lead to Parkinson’s. These are often referred to as risk factors.
Early signs, even decades prior to diagnosis include changes to handwriting, sense of smell and constipation. You may experience unexplained pain in your shoulder, back or hips that is not relieved by physiotherapy or other treatments. You or your loved ones might notice changes to your voice, facial expression, mood and motivation. As dopamine levels drop by 50% or more, the body starts to show the classical signs of Parkinson’s like tremor, slowness of movements, stiffness and changes to posture or gait disturbances.
A Parkinson’s diagnosis may take years the younger you are, as it is most commonly diagnosed in over 60s. Earlier non-motor symptoms may appear decades prior to the movement symptoms. There is also no one definitive test or scan to diagnose Parkinson’s, so it relies on experts picking up on the seemingly unrelated signs and symptoms over time.
While there’s currently no cure for Parkinson’s, ongoing research is bringing us closer to understanding Parkinson’s and its mechanisms, thus developing better treatments. Medications, therapies, and lifestyle adjustments can help manage symptoms and improve quality of life for those living with Parkinson’s.
Understanding the pathophysiology of Parkinson’s gives us insight into the myriad challenges it presents and the importance of ongoing research and support. By learning more about how Parkinson’s affects the brain and body, we can better support those living with the condition.
Sources:
Definition of pathophysiology (Merriam Webster Online)
The symptoms of Parkinson’s disease that are typically used to lead to a clinical diagnosis are related to movement or called motor symptoms. The four cardinal symptoms doctors look to include:
- Tremor: This usually happens when a limb (often a hand) is resting and goes away when you move voluntarily. It might start with a back-and-forth rubbing of the thumb and forefinger, known as a “pill-rolling” tremor. However it’s estimated about 70% of people with Parkinson’s have a resting tremor.
- Bradykinesia: This means things slow down. It’s when you start to notice a gradual loss of your usual quickness in everyday movements like walking or getting dressed.
- Rigidity: Imagine your muscles feeling stiff and tight, making it tough to move smoothly. That’s what rigidity is all about.
- Postural instability: This one’s about balance and coordination. It can make it tricky to stand tall and steady, sometimes leading to an increased risk of falls.
Keep in mind, though, not everyone with Parkinson’s will have all of these symptoms, and how it plays out can vary a lot from person to person.
Take care and remember, knowledge and understanding are key steps in being able to manage the challenges that arise from symptoms like these.
There is currently no test or biomarker that can definitively diagnose Parkinson’s. Everyone’s combinations of Parkinson’s symptoms are different making it tricky to diagnose. A GP or neurologists often looks at a clinical history plus motor symptoms, like the stereotypical slow and stiff movements and shaking.
However, current research has identified early warning symptoms like unexplained loss or diminished sense of smell, changes in handwriting, mood and sleep that may occur decades before the movement symptoms arise.
Medical professionals often prescribe dopamine replacement therapies to help get your body and brain the dopamine it needs to control mood and movements.
Medications & treatments infosheet
Parkinson’s Australia is working with researchers and others in the community to help find better treatments and supports for people living with Parkinson’s.
Being proactive about your Parkinson’s will also help you manage any fear or anxiety you may be experiencing due to the diagnosis. It is very important to gain an understanding of which of your symptoms are caused by Parkinson’s. The good news is that there are a wide range of early intervention strategies you can use to continue to live well with Parkinson’s for a long time. Assemble a care team that will help you plan your wellness journey.
Once you identify which symptoms are most affecting your quality of life, you can talk with your care team about options like exercise, medications and therapies. Remember, your symptoms change over time, but your Parkinson’s care team should be able to guide you along the way.
Exercise is really important for people with Parkinson’s because it helps in so many ways. It improves how you move, makes you stronger, and helps you keep your balance. Medications are taken up better and it helps your constipation. Plus, it boosts your mood, equips you handle stress better, and best of all, it doesn’t have any bad side effects! Studies show that exercise can even slow down how fast Parkinson’s symptoms progress.
You can choose any kind of exercise that you enjoy, like dancing, cycling, yoga, boxing, walking, or Tai Chi. An exercise physiologist, who’s part of your care team, can make a plan just for you, based on how your Parkinson’s symptoms affect you. Why? Because Parkinson’s often affects one side of your body more than the other, it might mean adjusting how you use exercise equipment. For example, getting your bike set up just right for your body can make a big difference in how comfortable and effective your workouts are.
By staying active and exercising regularly, you’re not only helping your body stay strong, but you’re also taking charge of your mental health and feeling better overall, even while living with Parkinson’s.
Yes, individuals with Parkinson’s can still drive, but it’s a medical condition that needs to be declared (see Medical Fitness to Drive at AusRoads), requiring notification to the transport authority in your respective state or territory.
Check your state or territory website for necessary forms for a GP or neurologist to fill out and file ASAP. Failing to disclose may lead to consequences such as insurance issues, legal liabilities, or driving offences. Also check with your insurance what is required on their end.
Parkinson’s can run in families because of faulty genes, but this is very rare (about 10-15% of cases). Most people with Parkinson’s have idiopathic Parkinson’s, where the cause is unknown. A person’s risk of developing Parkinson’s may also be influenced through their genes, although exactly how these make some people get Parkinson’s is unclear. Research into Parkinson’s has made remarkable progress. There is very real hope that the causes, whether genetic or environmental, will be identified and the precise effects of these will be understood in the near future.
Since there is no cure for Parkinson’s as of yet, the medications and treatments of Parkinson’s focus on managing symptoms. If Parkinson’s is left untreated, symptoms can progress more quickly and impact your every day activities significantly. It is recommended to focus on the most bothersome symptoms with your care team, where your:
- A neurologist can prescribe medications to help you
- Allied health professionals can prescribe assistive technologies and exercises to help you maintain wellbeing
- Parkinson’s Nurse Specialists can review how medications and treatments are helping your symptoms and suggest changes to your treatments or medications.
National advocacy
Parkinson’s Australia develops position statements and policies on matters of national significance. Our policies aim to ensure that Australia provides an environment for the Parkinson’s community to promote the best possible quality of life for people with Parkinson’s. We also work with Parliamentary Friendship Groups – non-partisan forums for Federal Members to meet and interact with community causes.
Connection
It often helps to talk to people that know what you are going through. Connect with us at the biannual Parkinson’s Australia National Conference.
Link to support groups via the infoline on 1800 644 189. You will be directed to the Parkinson’s organisation in your state or territory.
Assemble your team of Parkinson’s specialists carefully, as they will be on your journey with you for a long time. Make sure you get along with them and feel free enough to ask questions about your symptoms and ongoing care. Always include a care partner or support person in appointments with specialists as they make take in things you miss.
Awareness
Finding credible sources of information online can be overwhelming. A few tips to make sure you have the best possible sources you can access for fact on Parkinson’s:
- Get information on websites, from videos and podcasts from Parkinson’s organisations and peak bodies at the state, national and international levels.
- Avoid sites that want to sell you things. If it sounds too good to be true, it probably is.
- Make sure the articles and papers you read are from peer reviewed scientific articles. Google Scholar and other peer reviewed journals are a good place to start. If you need help discerning what to believe, make sure to discuss any suggested treatments or changes to your medication regime with a Parkinson’s Nurse specialist or your General Practitioner first.
Learning about the condition and what symptoms your person living with Parkinson’s may experience can be a big support. There needs to be an understanding that Parkinson’s symptoms fluctuate and may cause variability from day to day or even hour to hour and can affect your plans. However, maintaining a social life is very important to the wellbeing of both the person with Parkinson’s and their families. Being flexible and having patience are key to accommodating people living with Parkinson’s.
If you are living with or caring for someone with Parkinson’s, you should also consider your own personal needs and look after yourself… seek counselling if necessary. Register yourself and any young carers on the Carers Gateway and see Carers Australia for more information. Just as there are many support groups for people with Parkinson’s, there are also support groups for carers and young carers.
Over 40 symptoms have been associated with Parkinson’s, however, not everyone will experience the same combination of them, nor will you experience all of them. They may also change over time. Consult with your care team for solutions and strategies to deal with the most bothersome symptoms you experience; with a range of lifestyle changes, medications, therapies and treatments, you can live well with Parkinson’s despite its impacts.
Living with Parkinson’s can involve a range of challenges affecting intellectual (cognitive) function, mood, and behaviour. These may include:
- Forgetfulness and disorientation in time and space
- Vivid dreaming (e.g. REM Sleep Behaviour Disorder)
- Depression
- Anxiety
- Apathy or lack of motivation
- Features of dopamine dysregulation syndrome
- Nighttime sleep problems (insomnia, restless leg syndrome, nocturia)
- Daytime sleepiness
- Pain and other sensations
- Urinary problems
- Constipation problems
- Lightheadedness most often experiences from sitting to standing
- Fatigue (a tiredness that cannot be relieved with sleep)
- Hallucinations
- Delusions and paranoia
- Changes to memory, executive functioning and
Parkinson’s can also impact everyday activities, making certain tasks and activities more challenging to complete. These may include:
- Difficulty being understood when speaking
- Salivation and drooling
- Chewing and swallowing difficulties
- Difficulties cutting food
- Smaller handwriting
- Needing assistance with getting dressed, including buttons and sleeves
- Requiring help with bathing and brushing teeth
- Trouble engaging in hobbies and other activities
- Difficulties turning in bed
- Tremor affecting daily activities
- Difficulties getting in and out of bed
- Walking difficulties, balance issues, and falls
- Freezing episodes
The motor symptoms of Parkinson’s involve impacts to various aspects of movement and coordination. These include:
- Speech volume and clarity (diction)
- Reduced facial expressions
- Muscle stiffness (rigidity)
- Finger tapping speed
- Slowed hand movements
- Difficulty arising from a chair
- Gait issues such as shuffling or difficulty walking
- Freezing of gait
- Challenges with postural stability and balancing
- Stooped posture
- Reduced spontaneous body movement, overall slowness of movements (bradykinesia)
- Resting tremor
Over time, individuals with Parkinson’s may experience motor complications that can impact daily life. Dyskinesia (involuntary movements), including its duration, impact on daily function, and painful off-state dystonia. Motor fluctuations, including time spent in the “off” state, functional impact, and complexity of fluctuations.
While the progression of Parkinson’s varies widely between people living with Parkinson’s, so do the symptoms each person experiences. There have been attempts to note the stages of Parkinson’s in relation to functional disability by Hoehn & Yahr in 1967; this information has been superseded by other rating scales (e.g. UPDRS, PDQ-39, WHODAS). The Movement Disorder Society reviewed this in 2004 with further recommendations to the five H&Y stages and the Modified scale that suggested using 0.5 increments.
| Stage | Hoehn and Yahr Scale (1967) | Modified Hoehn and Yahr Scale |
|---|---|---|
| 1 | Unilateral involvement only usually with minimal or no functional disability | Unilateral involvement only |
| 1.5 | – | Unilateral and axial involvement |
| 2 | Bilateral or midline involvement without impairment of balance | Bilateral involvement without impairment of balance |
| 2.5 | – | Mild bilateral disease with recovery on pull test |
| 3 | Bilateral disease: mild to moderate disability with impaired postural reflexes; physically independent | Mild to moderate bilateral disease; some postural instability; physically independent |
| 4 | Severely disabling disease; still able to walk or stand unassisted | Severe disability; still able to walk or stand unassisted |
| 5 | Confinement to bed or wheelchair unless aided | Wheelchair bound or bedridden unless aided |
This H&Y rating system has been largely replaced by the Unified Parkinson’s Disease Rating Scale (UPDRS), which assesses limitation of daily activities and non-motor symptoms in more detail. In 2008 the International Movement Disorder Society modified this to the MDS-UPDRS, contact them for use permissions and more details on who can use the scale.
Sources:
Hoehn MM, Yahr MD. Parkinsonism: onset, progression and mortality. Neurology. 1967 May;17(5):427-42. doi: 10.1212/wnl.17.5.427. PMID: 6067254.
Movement Disorder Society – Sponsored Revision of the UPDRS (MDS-UPDRS) MDS – UPDRS 2008.
Movement Disorder Society Task Force report on the Hoehn and Yahr staging scale: Status and recommendations. The Movement Disorder Society Task Force on rating scales for Parkinson’s disease – Goetz – 2004 – Movement Disorders – Wiley Online Library
Wikipedia Hoehn and Yahr Table. Accessed 10/7/24
In Parkinson’s disease, several rating scales are used by healthcare professionals to assess and monitor various aspects of the condition. These scales help in evaluating symptoms, disease progression, and treatment effectiveness. Here are some commonly used rating scales in Parkinson’s:
Unified Parkinson’s Disease Rating Scale (UPDRS)
This is one of the most widely used scales, provides a comprehensive assessment of both motor and non-motor symptoms and consists of four parts:
- Non-motor aspects of experiences of daily living.
- Motor aspects of experiences of daily living.
- Motor examination.
- Complications of therapy.
Hoehn and Yahr Scale (1967)
This scale categorises the progression of Parkinson’s based on stages of functional motor impairment and disability. It ranges from Stage 1 (mildest) to Stage 5 (most severe), helping to classify the severity of symptoms over time.
Modified Hoehn and Yahr Scale
This is a modified version of the above H&Y scale that provides a more detailed assessment of motor disability, often used in clinical trials and research using 0.5 increments instead of just 1 to 5 scoring.
Parkinson’s Disease Quality of Life Questionnaire (PDQ-39)
This questionnaire assesses the quality of life in individuals with Parkinson’s across various domains such as mobility, activities of daily living, emotional wellbeing, and social support. You can visit the Young Onset Parkinson’s Exchange and download the app to complete this questionnaire then email your scores to yourself and your care team. Don’t forget to add this to your NDIS application.
WHODAS 2.0
The World Health Organization Disability Assessment Schedule (WHODAS) is a valuable tool for people with Parkinson’s because it provides a standardised way to measure health and disability across different cultures and settings. It helps assess the impact of Parkinson’s on various aspects of your daily life over the past 30 days, including:
- Cognition: Understanding and communicating
- Mobility: Moving and getting around
- Self-care: Attending to hygiene, dressing, eating, and staying alone
- Getting along: Interacting with other people
- Life activities: Domestic responsibilities, leisure, work, and school
- Participation: Joining in community activities and participating in society.
You can visit the Young Onset Parkinson’s Exchange and download the app to complete this questionnaire then email your scores to yourself and your care team. Don’t forget to add this to your NDIS application.
Montreal Cognitive Assessment (MoCA)
Although not specific to Parkinson’s, the MoCA is often used to assess cognitive function, which can be affected in some cases of Parkinson’s, especially in later stages.
Schwab and England Activities of Daily Living Scale
This scale measures the ability of a person with Parkinson’s disease to perform activities of daily living independently.
Movement Disorder Society-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS)
An updated version of the UPDRS developed by the Movement Disorder Society, which includes revised criteria and scoring for assessing motor and non-motor symptoms. Contact them to seek permissions or be trained to use the rating scale.
These rating scales provide healthcare providers with valuable tools to evaluate different aspects of Parkinson’s, tailor treatment plans, and track changes in symptoms and overall health and wellbeing over time. They also aid in communication between your care team of healthcare professionals, and researchers, regarding progression and treatment outcomes.
Parkinson’s biomarkers are medical signs, biological indicators or measurements that can be objectively measured and evaluated to indicate the presence, progression, or severity of Parkinson’s. For example, like blood pressure or cholesterol is measured for your heart. Some types of Parkinson’s biomarkers include:
Genetic Biomarkers: Specific genetic mutations or variations that are associated with an increased risk of developing Parkinson’s or that may influence progression.
Biochemical Biomarkers: Proteins, metabolites, or other molecules found in bodily fluids (such as blood or cerebrospinal fluid) that can be measured to assess Parkinson’s status or progression.
Imaging Biomarkers: Neuroimaging techniques such as MRI (Magnetic Resonance Imaging), PET (Positron Emission Tomography), or SPECT (Single Photon Emission Computed Tomography) scans that reveal structural changes, protein deposits (like Lewy bodies), or functional abnormalities in the brain associated with Parkinson’s.
Clinical Biomarkers: Objective measures of clinical symptoms and signs associated with Parkinson’s, such as motor impairment scores (like UPDRS), cognitive assessments (like MoCA), and assessments of non-motor symptoms.
Biomarkers of Inflammation and Oxidative Stress: Markers that indicate increased inflammation or oxidative stress levels in the body, which are believed to play a role in the development and progression of Parkinson’s.
Identifying reliable biomarkers for Parkinson’s is crucial for improving early diagnosis, monitoring disease progression, assessing treatment efficacy in clinical trials, and potentially developing targeted therapies. Ongoing research aims to discover and validate biomarkers that can provide more accurate and timely insights into Parkinson’s, ultimately improving outcomes for individuals affected by this condition.
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