Patient & Family Toolkit

Understanding Your Diagnosis

Learning about Multiple System Atrophy is an important first step towards understanding the condition.

MSA is a rare and progressive neurological disorder that can affect movement, balance, coordination and functions controlled by the autonomic nervous system.

Understanding the condition and its potential effects may help individuals and families prepare questions, discuss concerns and make informed decisions with their healthcare teams.

Our Understanding MSA section provides general information about symptoms, diagnosis and management.

Preparing for Medical Appointments

Medical appointments can involve a lot of information, particularly when managing a complex condition such as MSA.

Preparing beforehand may help you make the most of your time with healthcare professionals.

Consider keeping a record of:

• Questions you’d like to ask.
• New or changing symptoms.
• Current medications and treatments.
• Concerns about daily activities.
• Changes in mobility, communication or swallowing.
• Recommendations from previous appointments.

Resource planned: Medical Appointment Checklist.

Medication Information

Keeping an accurate and up-to-date medication list can help patients, carers and healthcare professionals communicate important information.

A medication record may include the name of each medication, prescribed dose, timing, prescribing clinician and any relevant instructions.

Medication changes should always be discussed with the treating healthcare professional.

Resource planned: Printable Medication List.

Symptom Tracking

The symptoms and progression of MSA can vary between individuals.

Maintaining a symptom diary may help identify changes and support discussions with your healthcare team.

A symptom tracker could include observations about movement, balance, blood pressure, sleep, bladder and bowel function, swallowing, speech and other symptoms relevant to the individual.

Symptom records are intended to support medical conversations, not replace professional assessment.

Resource planned: MSA Symptom Tracker.

Care Planning & Daily Living

As individual needs change, it may become helpful to consider practical arrangements for everyday life.

This could involve discussing:

• Home safety and accessibility.
• Mobility equipment and assistance.
• Occupational therapy and physiotherapy.
• Communication and swallowing support.
• Personal care and daily activities.
• Future care preferences and support arrangements.

Planning should reflect the individual’s wishes, circumstances and advice from appropriately qualified professionals.

Resource planned: Personal Care Planning Checklist.

Emergency Information

Having important information readily available may assist family members, carers and healthcare professionals during an emergency.

An emergency information sheet could include:

• Emergency contacts.
• Treating doctors and specialists.
• Relevant medical conditions.
• Current medications and allergies.
• Important communication or care needs.
• Other information recommended by the person’s healthcare team.

Keep emergency information accurate and review it regularly.

Resource planned: Emergency Information Sheet.

Support for Families & Carers

Multiple System Atrophy can have a significant impact not only on the person living with the condition but also on family members, friends and carers.

Caring responsibilities may change over time and can involve physical, emotional and practical challenges.

It is important that carers also have access to appropriate information, support and opportunities to discuss their own wellbeing.

Support may be available through healthcare professionals, community services, carer organisations and other appropriate services.

Emotional Wellbeing, Grief & Bereavement

Living with or supporting someone affected by a progressive neurological condition can bring a wide range of emotions.

Individuals and families may experience uncertainty, sadness, frustration, anticipatory grief or feelings of isolation.

There is no single correct way to respond to these experiences.

Speaking with trusted people, healthcare professionals, counsellors or appropriate support services may be helpful.

National MSA Research recognises the importance of emotional wellbeing for patients, carers and families, including those experiencing grief following the loss of a loved one.

Australian Support Services

A range of Australian organisations and services may be able to assist people affected by MSA.

Depending on individual circumstances, these may include government support programs, disability services, aged care services, carer support organisations and healthcare providers.

We aim to make relevant Australian support resources easier to locate through our website.