Reprinted from a Parkinson’s WA article with permission from author David Blacker AM, MB BS, FRACP;  Medical Director, Perron Institute; Parkinson’s Australia Board director; Board member Parkinson’s WA

I’ve recently retired after 30 years of medical practice, having seen thousands of patients in that time. Over the last 18 months, I’ve spent a lot of time on the other side of the desk in the patient’s chair. Most of that has not been related to Parkinson’s, so it’s been eye-opening for me to be in that position. I’ve often felt like I’ve been in a “limbo state”, with colleagues treating me a little different to a patient who is not a doctor. That has not always been a good thing! The upside of my experience, which included a bout of COVID, mild depression, five operations and of course, Parkinson’s, is that it has given me a lot of think about regarding doctor-patient interactions.

I’d like to share some suggestions about how to make the most of your next specialist visit; these pertain mainly to Parkinson’s, but they could also apply to other specialties. Appointments with specialists like neurologists tend to be infrequent, typically every 6 months; sometimes more, sometimes less. I observed some people being quite nervous about their visits, speaking quickly and trying to make the most of every minute, only to forget a crucial question they wanted to ask. It’s important to take some time to prepare. I’d suggest the following:

In the weeks before

  1. Make sure you have an up-to-date referral – this will usually mean a visit to your GP. The referral is an integral part of the Australian Medicare system, which should help enable better communication between GPs and specialists. Without a referral, you will not be able to claim a Medicare rebate.
  2. Test results – If the specialist has ordered tests (e.g. scans, blood tests), make sure there is plenty of time for the results to become available – I’d recommend about a week. Never assume that the lab or radiology firms will get the results to the specialist. In my private practice, I’d always look up the results the night before to ensure I was ready for the consultation and to avoid wasting precious time during the consultation.
  3. Forms – If you have paperwork that needs completion, e.g. NDIS, insurance forms, or driver’s license renewals, let the specialist know this before the consultation. Often, they will need to ask you questions to complete these forms. Don’t assume they know what your occupation is, and what it involves – insurance forms often ask for this. I now understand how important these forms can be; it’s very stressful if your driver’s license is due and you don’t have an appointment. It’s also frustrating for the specialist to be given a huge form during the last minutes of a consultation that needs to be done urgently.

On the day

  • Make sure you leave plenty of time to get there. Parking is at a premium around most major medical centres, so allow extra time, especially in the middle of the day. If you are running late, call the office or clinic; that way the doctor can readjust their list. Sometimes it may be better to reschedule than to see a doctor who is rushing.
  • If your appointment is late morning or late afternoon, it usually means you are one of the last patients to be seen in that specialist’s session of work. Most specialists tend to “get behind” the clock as the session progresses, so don’t be surprised if your allocated time comes up and you are still waiting to be called. Make sure you communicate with the secretary; good secretaries will call you to advise on “how things are going and if the doctor is running on time.”
  • Emergencies happen, and sometimes an appointment becomes more complicated than expected, so the doctor gets behind on time. Rather than getting upset, consider the extra time and attention you would want if something came up that needed extra time. If you are last on the list, you may get bonus extra time; I would sometimes schedule a complex follow-up last, so there was no stress about running late and making the next patient wait.
  • Wear comfortable clothes that you can remove and put back on easily to allow for examination. Things get missed if specialists don’t examine you thoroughly, and usually this requires proper exposure.
  • Bring someone with you – spouse, carer, friend, support worker. Another set of eyes and ears is invaluable.

Make sure you bring an up-to-date list of ALL medications you take with doses, and, for Parkinson’s medications the times when you take them. The specialist will usually be happy to write scripts for Parkinson’s medication but may not be comfortable with medications for other conditions they are less familiar with.

If you are taking L-dopa, it will be useful for you to think about a few aspects.

  1. Do you feel it is making a difference in symptoms, think of examples e.g. effect on handwriting.
  2. Can you feel the effect coming on, or wearing off?
  3. When do you take medications in relation to meals (especially in relation to protein consumption, even milk in your tea and coffee can interfere)?
  4. Have you noticed any difference if you have been late on a dose or missed a dose?
  5. Have you had side effects, e.g. nausea, or light-headedness?

Don’t forget to think about non-motor symptoms:

Symptom tracking – It may also be useful to think about how your overall symptom control compares to 3, 6 and 12 months ago, and before and after any medication changes. Think about any change in specific activities you regularly do over time, e.g. how easily a regular walk might be, whether you can put your pants on whilst standing up, and can you still do up buttons unassisted.

Importantly, bring a written list of questions, with the most important ones at the top of the list.

Don’t be afraid to ask questions. If you don’t understand something, be sure to ask for further explanation.

At the end of the consultation, be sure you understand if there are to be any changes in medications or tests. Be sure to ask about the side effects of new medications.

Make sure you have a means of making contact before the next appointment. Most specialists should be prepared to be contacted through work e-mails. Don’t expect to be given a private email address or mobile number.

Ask for a copy of the letter from your visit to be sent to you; this will help remind you of what was covered and is useful to keep in your records for an insurance or work claims. Also, ask for any of your results to be copied to you as well.

Before your appointment

Symptom Tracking Diary (2–4 weeks minimum)

Track your symptoms daily to help your care team understand patterns and progression.

Include:

  • Date & time of symptoms
  • Motor symptoms:
    • Tremor (rate 1–10)
    • Slowness (bradykinesia)
    • Rigidity or stiffness
    • Freezing episodes (akinesia)
    • Gait or balance issues
  • Non-motor symptoms:
  • When symptoms occur:
    • At rest, during movement, or holding positions
    • After taking medication (“on”) or before next dose (“wearing off”)
    • In the morning/evening
  • Triggers:
    • Stress, poor sleep, medication not on time, dehydration
  • Functional impact:
    • Tasks you avoided or struggled with
    • Safety concerns (falls, near misses)
    • Social or work limitations
    • Emotional responses (frustration, embarrassment)

Also bring these to your appointment:

  • Medicare card and private health insurance details
  • Full list of current medications (including dosages), vitamins, supplements, and over-the-counter products
  • Emergency contact details
  • Relevant medical records (neurologist letters, allied health reports, hospital discharge summaries)
  • Recent test results (e.g. MRI, DaTscan, blood tests)
  • Any forms you need filled out or signed (e.g. driving authority, NDIS, insurance)

Note any relatives with:

  • Parkinson’s or neurological conditions
  • Essential Tremor, dystonia, or other movement disorders
  • Age of onset and symptom progression
  • Treatments that helped or didn’t help

Daily Function Assessment

Note any changes in your ability to do your normal daily tasks.

Fine motor skills:

  • Handwriting changes
  • Difficulty with buttons, zippers, and shoelaces
  • Handling coins, keys, or putting on makeup

Eating & drinking:

  • Trouble using utensils
  • Spilling drinks or food
  • Avoiding public eating

Personal care:

  • Brushing teeth, shaving, dressing
  • Using the toilet independently
  • Washing/styling your hair

Work or study:

  • Typing, writing, using assistive technology/tools
  • Phone use, driving confidence

Social & recreational:

  • Avoiding social outings
  • Difficulty with hobbies or sports
  • Changes in musical or artistic ability

Questions to ask your GP

About your symptoms:

  1. Could this be Parkinson’s or another condition?
  2. What tests can help hone in on the diagnosis?
  3. How do you differentiate Parkinson’s from Essential Tremor or other disorders?

About progression:

  1. What symptoms might appear over time?
  2. Are there signs I should watch for?
  3. Can anything slow progression?

About treatment:

  1. What medications are available, and what are the side effects?
  2. Are there non-drug therapies that can help?
  3. When should I see a neurologist or movement disorder specialist?

About support:

  1. Am I eligible for a GP Chronic Disease Management Plan, Mental Health Plan or Team Care Arrangement?
  2. Can I access allied health services (e.g. physiotherapy, OT, speech pathology)?
  3. Could I qualify for NDIS or DVA supports?
  4. Are there local support groups or Parkinson’s-specific resources?

During your appointment

Start with your main concern:

“I’ve been experiencing symptoms like tremor and stiffness that are affecting my daily life. I’d like to understand what’s causing them and what support is available.”

Describe symptoms clearly:

Instead of: “I feel off sometimes.”

Say: “I feel slow and stiff in the mornings, and I sometimes freeze when walking through doorways.”

Include:

  • Specific body parts affected
  • When symptoms started and how they’ve changed
  • What makes them better or worse
  • Impact on daily life and mood

Mention patterns and triggers:

  • “Symptoms worsen before my next medication dose.”
  • “I freeze more often when I’m anxious or in crowded places.”
  • “I feel more rigid in cold weather.”

Explain the impact with examples:

  • “I’ve stopped driving because I don’t feel safe with my vision changes.”
  • “I avoid social events because I struggle to eat in public.”
  • “I’ve had to reduce my work hours due to fatigue and slowness.”

After your appointment

Follow up on your health professional’s advice:

  • Book tests or specialist referrals
  • Fill prescriptions and ask the pharmacist about them to understand how to take them
  • Contact allied health professionals (e.g. physio, OT, speech pathologist)
  • Schedule your next review appointment

Starting new treatments:

Translation Guide: describing Parkinson’s symptoms

What you feel What to say to your doctor
“I freeze when walking through doorways” “I experience freezing of gait in specific situations”
“I feel stiff and slow in the mornings” “I have bradykinesia and rigidity, especially after rest”
“I shake when I’m nervous or tired” “I have a resting tremor that worsens with fatigue or stress”
“I can’t write like I used to” “I have micrographia and fine motor impairment”
“I feel foggy and forgetful” “I’m experiencing cognitive changes and brain fog”

Red Flags: When to Seek Urgent Care

Call 000 immediately if you experience:

  • Sudden weakness or paralysis
  • Confusion or loss of consciousness
  • Severe headache with neck stiffness
  • Difficulty breathing or swallowing
  • Head injury with vomiting or confusion

See your GP the same day if:

  • Rapid worsening of symptoms
  • New tremor or stiffness after starting medication
  • Fever with tremor or confusion
  • New speech or swallowing issues
  • Falls or sudden balance problems.

References

Brown, A., & Smith, J. (2019). Reducing patient anxiety: Strategies in effective clinical communication. Journal of Health Communication, 24(5), 542-549. https://doi.org/10.1080/10810730.2019.1641234

Haskins, L. (2018). The value of patient involvement in healthcare decision-making. Patient Education and Counseling, 101(3), 503-509. https://doi.org/10.1016/j.pec.2017.10.015

Martin, R., Patel, P., & Evans, D. (2017). Patient preparation and its impact on consultation outcomes in chronic diseases. Australian Journal of Primary Health, 23(4), 295-301. https://doi.org/10.1071/PY17020

Preparing for appointments – Parkinson’s Australia

Symptoms Checklist to bring to hospital-FactSheet

https://www.parkinsons.org.au/wp-content/uploads/2025/07/FS-preparing-for-an-appt-2025.pdf

 

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