Diagnosis

Understanding a Parkinson’s diagnosis begins with recognising the gradual onset of symptoms.

While the diagnosis of Parkinson’s may take time, especially considering the subtlety of some symptoms, each step brings you closer to a tailored plan that optimises your choices, independence, and overall wellbeing.

Who gets Parkinson’s?

Parkinson’s doesn’t discriminate by age or gender; it can affect anyone. Even very rare cases of juvenile Parkinson’s exist. While most cases of Parkinson’s are diagnosed in people over 60, 1 in 5 Australians living with Parkinson’s were diagnosed under the age of 50 (1). This is referred to as young onset Parkinson’s.

Right now there is no biomarker for Parkinson’s so it relies on a clinical diagnosis by a GP or neurologist.

You could participate in a genetic study and with any family history or young onset diagnosis suspected, that data would be very useful to the study. https://www.qimrberghofer.edu.au/apgs/. However only about 10% of PD cases are linked to genes currently.

Adapted questionnaire from the Michael J Fox Foundation which aims to help people determine if they should speak to their GP or geriatrician about investigating a Parkinson’s diagnosis.

If you answer yes to anyone one of these early symptoms, it does not mean you may have Parkinson’s. However if you answer yes to several of the questions below, discuss these changes with your GP and decide if there are any next steps. Talk to your GP even if you answer no to most of these questions but feel that something is not quite right, for example, your mood or mobility have changed and affects your quality of life. Also take note if any of the movement symptoms start on one-side of the body or both.

Do you have chronic constipation (less than 3 movements a week)?
Have you experienced a reduced or complete loss of your sense of smell?
Do you have unexplained mood changes, especially anxiety, depression and/or apathy?
For young onset, typically have you experienced more unexplained back/shoulder pain (e.g. unexplained shoulder pain that isn’t relieved by physio)?
Have you been getting slower in your usual daily activities?
Is your handwriting getting smaller or illegible?
Is your speech slurred or softer? Do people ask you to speak up even though you do not notice a change in your volume?
Do you have trouble rising from a chair or getting out of bed?
Do your lips, hands, arms and/or legs shake? Does your finger twitch ?
Have you noticed more overall body stiffness?
Do you have trouble fastening buttons or dressing?
Do you shuffle your feet and/or take smaller steps when you walk? You may notice uneven wear on the soles of your shoes.
Do your feet seem to get stuck to the floor when walking or turning?
Have you or others noticed that you don’t swing one arm when walking?
Do you have more trouble with your balance?
Have you or others noticed that you stoop or have abnormal posture?
Do you blink less, or do people think you are staring or disinterested in what they are saying?
Have you, your coworkers or your loved ones noticed a lack of facial expression?

If you want to discuss these changes with your GP or if you have noticed a loved one facing some of these difficulties, print these questions out as a conversation starter.

The earlier you get a diagnosis, the earlier you can start interventions that keep you well for longer.

How do they diagnose Parkinson’s?

No widely available test currently exists to definitively diagnose Parkinson’s. Diagnosis traditionally relies on clinical observations, particularly the recognition of cardinal motor symptoms – slowness of movements (bradykinesia) and muscle stiffness (rigidity), which can result in falls and balance issues later on (2). Tremors occur in around 75% of cases, with the majority being the stereotypical, pill-rolling, resting tremor (3). Specialised medical diagnosis involves consultations with a GP. Sometimes, early symptoms may go unrecognised, like changes in handwriting, loss of sense of smell, constipation or shoulder pain and can lead to delays in diagnosis. Initial assessment looks at your motor and non-motor symptoms, medical history, exposure to potential toxins and family history.

If recommended, you may be referred to a neurologist or geriatrician to have a neurological examination to confirm symptoms and rule out other conditions. A genetic test may be recommended, but only a fraction of cases involve known gene mutations. The majority of Parkinson‘s cases are idiopathic – or of unknown causes – emphasising the complexity of the condition (4).

The introduction of levodopa, a dopamine precursor and often first line medication for managing motor symptoms, is a significant aspect of both treatment of motor symptoms and diagnosis of Parkinson’s (2, 5).

What is Parkinson’s doing to me?

Parkinson’s is highly complex and individual. Each person experiences a unique combination of over a possible 50 symptoms, though not all of them. It is now recognised as a whole body disorder (2), resulting from the gradual reduction of dopamine and other brain chemicals.

It may affect your sleep, mood, motivation, vision, your gastrointestinal system and your movements. The lack of dopamine makes your body slower and stiffer, altering the way you walk and talk. Loss of facial expressions and reduced blinking are also common.

Decades prior to movement problems people may experience constipation, changes to handwriting, and loss of or a reduced sense of smell. Unexplained anxiety, depression, and apathy may appear, underlining the need for a holistic approach to wellbeing and earlier recognition of these early symptoms.

What should I do next?

Reactions to a Parkinson’s diagnosis can range from acceptance to fear and anger to denial and disbelief. Some people feel relief after seeking a diagnosis for such a long time. Seeking support is crucial, recognising that the emotional impacts often surpass the physical limitations early on. Adjusting to these life changes requires time, acceptance, and setting realistic expectations for you and others. Reach out to friends, family, colleagues, support groups and allied health professionals. Seminars, webinars, and information from trusted sources can help guide you through this journey. Be wary of sites selling things and not citing scientific research papers.

Maintaining self-identity is vital, urging you not to define yourself by Parkinson’s. Disclosing the Parkinson’s diagnosis to your workplace, friends or family is a personal choice, yet openness may bring relief and lower the stress of trying to hide your symptoms.

It is highly recommended to apply for NDIS support as soon as possible if under the age 65. See our Step by Step NDIS information sheets on the web and go to the YOPX website for more articles and helpful tips on what to include in your application. If 65 or older, My Aged Care (MAC) can provide financial assistance for the increased costs of managing this condition.

Our top 5 wellness tips

Parkinson’s disease affects many different systems in the body and can vary greatly from person to person, changing significantly over time. Regular check-ups by medical professionals are crucial, not only for diagnosing Parkinson’s early but also for managing it as it progresses. This is especially important for dealing with non-movement symptoms like depression, constipation, pain, and sleep problems. To help people with Parkinson’s live as well as possible and stay independent, a care team effort is essential. This means involving GPs, specialists like neurologists, and other healthcare professionals working together in a co-ordinated way.

Treatment can begin right away with some lifestyle changes to improve your overall wellness. Exercise is the number one best thing you can do for Parkinson‘s. It has been shown to slow progression (6).

Healthy lifestyle, good nutrition, keeping well hydrated, practising good sleep hygiene, and staying socially connected are our five favourite and easy tips to stay well and help reduce symptoms. Get specialist advice about the many medications that can help manage your motor and non-motor symptoms.

Your care team

Building a care team early is essential. Involve General Practitioners, physiotherapists, speech pathologists, occupational therapists, mental health specialists and others who will help you treat your most bothersome symptoms. If available, early self-referral to a Parkinson’s Nurse Specialist through your state or territory Parkinson’s Organisation can be invaluable.

Your GP May be able to help by getting you on a Mental Health Plan and/or Chronic Disease Management Plan to access these subsidised allied health professional supports.

If eligible*, your GP can also refer you for a Home Medications Review (HMR) where your pharmacist will come to your home to check your prescriptions and supplements for interactions and discuss with you how and when to take them to get the best results if you are finding this difficult. (*Patient eligibility: you must satisfy the following mandatory HMR Service Eligibility Criteria including being a current Medicare or DVA cardholder or is a person who is eligible for a Medicare card; be living in a community setting; are at risk of, or experiencing, medication misadventure; your GP/Referrer confirms that there is an identifiable clinical need for a HMR Service.)

Supports

Look to your local Parkinson’s organisation and government programs for early support in accessing the therapies and other help you may need to maintain your quality of life while dealing with this life-changing diagnosis.

NDIS
My Aged Care
Disability Gateway
Carers Australia
Carer Gateway
Young Carers Network
Services Australia

Case study Rex & Ann
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References

Mellick G (2024) Ecosystem of Parkinson’s in Australia. Parkinson’s Australia website.
Waller et al. (2021) The initial diagnosis and management of Parkinson’s disease. Aust J Gen Pract. 2021 Nov;50(11):793-800. doi: 10.31128/AJGP-07-21-6087. PMID: 34713282.
Gironell A, et al. (2018) Tremor Types in Parkinson Disease: A Descriptive Study Using a New Classification. Parkinson’s Disease.
Jankovic J, Tan EK (2020) Parkinson’s disease: etiopathogenesis and treatment. Journal of Neurology, Neurosurgery & Psychiatry; 91: 795-808.
Gandhi KR, Saadabadi A. Levodopa (L-Dopa) [Updated 2023 Apr 17]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan.
Crotty GF, Schwarzschild MA (2020) Chasing Protection in Parkinson’s Disease: Does Exercise Reduce Risk and Progression? Frontiers in Aging Neuroscience; Vol 12