INFOLINE INFORMATION PACK YOUR INFORMATION PACK

"WE ARE IN THIS TOGETHER"

Individual reactions to diagnosis will vary. Whatever the reaction, no one has to face this alone.

You will experience a range of emotions after your diagnosis. Please allow yourself and your family to go through these emotions. There is no right emotional response.

Please remember that we are here for you and your loved ones. If you or your family members would like to arrange to speak to one of our specialist counsellors please call the InfoLine on 1800 644 189.

At this early stage, it is important to focus on getting accurate information about the disease and creating a network of professional care providers and personal supports. For help creating this network and collecting information please call our InfoLine on 1800 644 189.

Not everyone experiences Parkinson’s in the same way and symptoms may differ from person to person. This collection of information will help answer some of your questions.

DEAR FRIEND LETTER

Parkinson’s NSW would like to thank you for reaching out and to welcome you to our support network. We’re in this together.

Download Dear Friend Thank You for your Enquiry

INFORMATION FOR PEOPLE LIVING WITH PARKINSON'S

Being told you have Parkinson’s can be overwhelming. You may feel disbelief and denial, or fear and sadness. You may find it a relief that your doctor has found a reason for the problems you have been experiencing.

One of the best ways to deal with anxiety or fear is to be informed. In this brochure, we have provided information about Parkinson’s. You will read about common symptoms, treatment options and lifestyle changes that can help you to better manage the condition. It is important to always discuss any questions about your condition or treatment with your doctor or other health care professionals.

It is important to remember that Parkinson’s affects everyone differently. Do not assume that you will experience the same symptoms as someone else with the condition. Parkinson’s progresses slowly and there are a number of medications available that effectively treat Parkinson’s symptoms. A wide range of research into the causes of the condition also provides hope for the future.

Download the brochure to learn more about the signs, symptoms and treatments available to those living with Parkinson’s.

Download Information for people living with Parkinson’s Blue Book

DO YOU KNOW SOMEONE LIVING WITH PARKINSON’S?

In Australia, every hour of every day someone is diagnosed with Parkinson’s. Latest research suggest up to 212,000 Australians are living with Parkinson’s. Whilst the majority of people affected are over 60 at the time of diagnoses, 18% are of working age and 10% are under the age of 40.

Download the brochure to learn more about Parkinson’s and how you can support a loved one living with Parkinson’s.

Download Do You Know Someone Living with Parkinson’s

DASH TO THE INFOLINE BOOKLET

Although every patient with Parkinson’s disease (PD) may appear to be very different, with a variety of symptoms and responses to treatment, they all share common concerns.

  • How will this disease affect my life?
  • How will this condition impact on the people I love?
  • Will I lose my independence?
  • What will happen to my quality of life?

These questions arise because at the moment there is no cure for
Parkinson’s. Although medications have dramatically improved the outlook for people living with Parkinson’s and their families over the past 40 years, everyone still appreciates that the condition follows a relentless progression with increasing difficulties over time.

This booklet contains information about Parkinson’s symptoms such as depression, anxiety, sleep disturbance and hallucinations and give insight to a healthy brain and mind in people living with Parkinson’s.

Download DASH to the InfoLine Booklet

I HAVE PARKINSON'S PERSONAL CARD

Communication can often be challenging. The ‘I have Parkinson’s Card’ can be printed and kept in your wallet or handed out to inform your loved ones or health professionals of possible symptoms you may experience.

Download the card, print it at home and keep a few copies in your wallet to give to those close to you.

Download I have Parkinson’s Card

CARER EMERGENCY CARD

The ‘Carer Emergency card‘ lists your emergency contact and importantly highlights that medications must be given on time.

Download the card, print it at home and keep a few copies in your wallet in case of an emergency.

Download Carer Emergency Contact Card

LIVING YOUNG, LIVING WELL WITH PARKINSON'S

Being diagnosed with Parkinson’s at a younger age has its challenges. Adjusting to lifestyle changes and the effect on family members needs an all in approach.

Coming to terms with the diagnosis is an individual journey which requires patience, support and accurate information. Exercise, diet, alcohol consumption and work environments can all have an impact on living with Parkinson’s.

Download to learn more about the common challenges faced by younger people living with Parkinson’s and how to live a full and happy life after a diagnosis.

Download Living Young, Living Well with Parkinson’s

PARKINSON'S AND COMMUNICATION

Parkinson’s is a progressive neurological condition which may affect both verbal and non-verbal communication. Up to 90% of people with Parkinson’s will experience communication changes at some time.

Download the brochure to learn more about common changes in verbal and non-verbal communication and how to manage symptoms.

Download Parkinson’s & Communication

PARKINSON'S, SWALLOWING AND ORAL HEALTH

Swallowing problems and oral health significantly impacts overall health and wellbeing but it can be easily overlooked when addressing the symptoms of Parkinson’s.

Download the brochures to learn more about swallowing and oral health problems those living with Parkinson’s may face.

Download Swallowing and Parkinson’sDownload Oral Health and Parkinson’s

PARKINSON'S AND CONSTIPATION

Constipation is a common problem for many people living with Parkinson’s and while it may seem more of an nuisance than a real health concern it must not be ignored. In addition to having major health risks it has a negative impact on quality of life.

Download the brochure to learn more about the complications that can arise from constipation and Parkinson’s.

Download Constipation & Parkinson’s

PARKINSON'S AND BLADDER CONTROL

The bladder is more usually affected by Parkinson’s several years after diagnosis. If bladder symptoms occur early an Atypical Parkinsonism may be considered as a diagnosis.

Download the brochure to learn more about bladder control and Parkinson’s.

Download Bladder Control and Parkinson’s

PARKINSON'S AND HOSPITALISATION GUIDELINES

Parkinson’s is a progressive neurological condition related primarily to the loss of dopamine producing cells within the midbrain. This condition may affect every aspect of daily living — both motor and non-motor, and the symptoms may fluctuate.

This brochure is to assist people living with Parkinson’s to prepare for hospitalisation and address potential problems that may be encountered during a hospital stay. The overall goal is for a safe hospitalisation with positive outcomes.

Download the brochure to learn more about safe hospitalisation for people living with Parkinson’s.

Download Parkinson’s & Hospitalisation Guidelines

MEDICATIONS USED IN THE TREATMENT OF PARKINSON'S

Parkinson’s is a progressive neurological condition related to the loss of dopamine producing cells in the brain. This brochure is intended to be a guide to the medications used in the treatment of Parkinson’s.

Please be aware that this guide is not to be used in lieu of professional health advice and is not an exhaustive list of medications and their side-effects. Specific questions relating to medications should be directed to an experienced healthcare professional.

Please contact the Parkinson’s nurse specialist at Parkinson’s NSW to discuss in detail 1800 644 189

Download the brochure to learn more about common medications that are used to treat symptoms of Parkinson’s.

Download Medications Used in the Treatment of Parkinson’s

MEDICATION TO BE USED WITH CAUTION FOR PEOPLE WITH PARKINSON’S

Many medications used in the treatment of other medical conditions have the potential to alter or interfere with the brain’s dopamine system and may be overlooked as having a detrimental effect on Parkinson’s.

It is important to consider the possibility that treatment of other medical conditions may cause or exacerbate existing Parkinson’s symptoms.

Please be aware that this guide is not to be used in lieu of professional health advice and is not an exhaustive list of medications and their side-effects. Specific questions relating to medications should be directed to an experienced healthcare professional.

Please contact the Parkinson’s nurse specialist at Parkinson’s NSW to discuss in detail 1800 644 189

Download the brochure to learn more about common medications that should be used with caution for people living with Parkinson’s.

Download Medications to be Used with Caution for People with Parkinson’s

TIPS FOR CARING FOR PEOPLE WITH PARKINSON'S

Although the cause of Parkinson’s is unknown, the symptoms associated with the condition are caused by the death of nerve cells in the brain that produce the neurotransmitter dopamine. The symptoms usually begin slowly, develop gradually and in no particular order. These include:

  • Rigidity of muscles
  • Slowness of movement
  • Tremors
  • Postural instability
  • Anxiety & depression
  • Constipation & urinary issues
  • Problems with swallowing & speech
  • Sleeping problems

Download the brochure to learn more about the symptoms associated with Parkinson’s and how best to manage them when caring for someone living with the condition.

Download Tips for Caring for People with Parkinson’s

BENEFITS OR ENTITLEMENTS FOR CARERS AND PEOPLE WITH PARKINSON’S

If you are caring for someone living with Parkinson’s you may be eligible for government assistance.

Download the fact-sheet to learn more about the benefits and entitlements you may be eligible for as a carer.

Download Benefits or Entitlements for Carers & People Living with Parkinson’s

STAND BY ME

Parkinson’s NSW releases a quarterly newsletter to inform our community of the latest news in Parkinson’s research, stories from those living with the condition and much more.

Download the latest Stand By Me issues and stay up-to-date with the latest developments in our community.

Download the latest issue of Stand By Me Magazine

Access past issues of Stand By Me

Stand By Me past issues

NEWLY DIAGNOSED PROGRAMS

Being diagnosed with Parkinson’s can be a life altering experience. If you have recently diagnosed, Parkinson’s NSW offers a program designed to broaden your understanding of the condition and increase confidence about symptom management.

The program runs twice a year or on a need’s basis with dates and location available from InfoLine on 1800 644 189.

Download the fact-sheet and consider attending our Newly Diagnosed program.

Download Newly Diagnosed Programs

PARKINSON’S NSW STATISTICS ABOUT PARKINSON'S

Parkinson’s NSW provides essential services to people living with Parkinson’s, their families and carers. We are proud to offer community based nurses, support groups, counseling, NDIS support and educational seminars across NSW.

Download the postcard to learn more about Parkinson’s in NSW and how we are assisting the community.

Download Parkinson’s NSW Stats Postcard