Patient Stories & Resources 2022

Welcome to Brain Awareness Week 2022

If you ask yourself, or anyone you know, if they have been affected in some way by a neurological condition, chances are they will answer “yes”. This might be a personal experience, or being a carer to a parent with dementia, or losing a loved one after a stroke.

We hope that these resources and patient stories can help you or a loved one who has been affected by a brain disease, disorder, or injury.

Resources for patients

Whether you’ve just been diagnosed with a brain disease, disorder, or injury, or you have been living with it for years, finding the right treatments or care team can be a challenge. While our team at the Brain Foundation isn’t able to give medical advice, we always do our best to point you in the right direction. Here are some resources that we hope can help.

Finding a Neurologist

Neurological conditions can sometimes be diagnosed and treated by your general practitioner (GP). But in other cases, they will suggest you find a neurologist. Your GP will usually be able to refer you to someone, but factors like location of the neurology practice, cost, or communication style might lead you to look into other practitioners. If you’re in the process of finding a neurologist, here are some tips to get you started.

Read the full article >

Finding patient organisations

If you were recently diagnosed with a brain disease, disorder, or injury, finding information about what this means for you can be overwhelming.

You can start out by checking our disorder directory, which has information on over 70 conditions. However, you might still have some questions, which could be about:

  • Finding a specific care provider
  • Where to rent or buy assistive technology (i.e. for mobility or speech)
  • NDIS (National Disability Insurance Scheme) access
  • Or other practical questions about what you need to do after your diagnosis

Your doctor should be able to answer a lot of these questions, but if you’re looking for answers online, you can try to find a patient organisation that specifically focuses on your condition. These organisations will often have in-depth resources to help with these questions. In some cases, they’re able to help you find assistive technology, or provide advice about the NDIS.

You can find links to these organisations on most of our disorder pages (and if you think something is missing, please let us know!).

What are clinical trials, and how can I be involved?

A clinical trial is any research study that involves human participants who volunteer to try a new treatment, allowing researchers to understand how it affects their health.

Some clinical trials are for newly developed pharmaceutical medications, while others might be comparing existing medications. There are also trials which evaluate the effect of dietary or lifestyle changes. This helps researchers determine if an intervention works, whether or not it is effective, and ensure it doesn’t have negative side effects.

Patients sometimes decide to participate in clinical trials to contribute towards a better understanding of their condition. In some cases, trials can also provide access to a new treatment before it is widely available. There isn’t a guarantee that the trial will be a success, but it can be rewarding to know that you’re helping other patients. And if the treatment is effective, it can be life-changing for many people. One example is the anti-CGRP medication for migraine, which is now available on the Pharmaceutical Benefits Scheme (PBS).

If you’re interested in finding a clinical trial, you can start by:

  • Speaking to your doctor or neurologist.
  • Visiting the Australian Clinical Trials website.
  • Contacting a relevant patient organisation (although not all organisations will have information on clinical trials)

Connecting with others

Humans are social creatures, and having trusted friends and family is important to all of us. But if you are living with a neurological condition, it’s important to know who is in your support system. This will be different for everyone – it might involve your partner, friends, family, your doctor, or a counsellor.

However, it can also be helpful to speak to people in a support group. Support groups are a great way to meet other patients and discuss your shared experience. If you’re interested in joining a group, here are some ways to find support for your brain disease, disorder or injury.

Finding an in-person support group

If you’d like to meet with others in person, you can start by speaking to your doctor or neurologist. They might know about groups in your area, or there could be a support group organised through their hospital/clinic.

Other support groups are sometimes organised by patient organisations. Many national organisations will have state branches that help facilitate this, such as:

If you’re still unable to find a support group in your area, you could contact local organisations like a community centre.

Online support groups

Online support groups are another great option, and have the benefit of being accessible to people outside of major cities. Thanks to social media, you can find a support group for just about anything by searching on Facebook.

Some groups are moderated, particularly those which are run by patient organisations (like the Migraine & Headache Australia group). However, keep in mind that this is still social media – make sure you ask your doctor about any medical information or advice shared by group members.

Other online groups are hosted on video chat platforms, which I’m sure many of you are familiar with after the COVID-19 lockdowns. These meetings are a great alternative if you would prefer an in-person group, but are unable to attend. You can find out more about these meetings through patient organisations.

Patient stories

Read Tracey's story

Read Andy's story

If you’d like to share your story in our newsletter, please contact us!

Organisations & events

Upcoming events & organisations

Here are a few upcoming events, plus some organisations that host regular events for patients. We also share upcoming events in our bi-monthly e-newsletter, so keep an eye on your inbox for events later in the year.

  • Migraine World Summit, March 17-25 | Sign up here >
  • World Coma Day, March 22 | More info >
  • National Brain Injury Conference, June 28-30 | More info >
  • Brain Tumour Alliance Australia – regular online support groups | More info >
  • Stroke Foundation – weekly webinars | More info >
  • Dementia Australia – regular online & in person events | More info >
  • Encephalitis Society – regular online events for people affected by encephalitis in Australia and New Zealand | More info >
Brain FoundationThe Brain Foundation is the largest, independent funder of brain and spinal injury research in Australia. We believe research is the pathway to recovery.