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.
Parkinson’s Australia National Conference
6-8 April 2025, National Convention Centre Canberra, ACT
