PATIENT & FAMILY SUPPORT

Practical support for people living with MSA and the people around them

A diagnosis of Multiple System Atrophy can bring many questions, changes and decisions.

National MSA Research is developing practical information and resources to help people living with MSA, families and carers feel better informed, more organised and better connected with appropriate support.

Every person’s experience of MSA is different. The information on this page is intended to support, not replace, advice from qualified healthcare professionals.

After a diagnosis

Receiving an MSA diagnosis can feel overwhelming.

There may be new medical terminology to understand, appointments to organise, questions about symptoms and treatment, and decisions about support at home and in the community.

It can help to take things one step at a time.

Some people may find it useful to:

• write down questions before medical appointments
• keep a current list of medications
• maintain contact details for members of the healthcare team
• keep notes about symptoms and changes
• identify a family member, friend or carer who can attend important appointments
• keep important medical and emergency information together

Your healthcare team

Because MSA can affect several different body systems, care may involve a number of healthcare professionals.

Depending on individual needs, the healthcare team may include:

• neurologist
• general practitioner
• physiotherapist
• occupational therapist
• speech pathologist
• dietitian
• continence or urology services
• respiratory or sleep specialists
• palliative care professionals
• psychologists, counsellors or social workers
• other allied health and community support services

The people involved may change over time as needs change.

Preparing for appointments

Medical appointments can involve a lot of information, particularly when several symptoms or specialists are involved.

Before an appointment, consider writing down:

• new or changing symptoms
• questions you want answered
• medications and any recent changes
• falls, fainting or significant changes in mobility
• changes in swallowing, speech, sleep or breathing
• bladder or bowel concerns
• changes that are affecting daily activities
• anything a family member or carer has noticed

Bringing a trusted person to appointments can also help with remembering information and discussing next steps.

Keeping important information together

Having key information organised can make appointments, emergencies and changes in care easier to manage.

Useful information to keep together may include:

• current medication list
• allergies
• emergency contacts
• GP and specialist contact details
• healthcare provider information
• medical history
• current support services
• advance care planning documents where applicable
• important appointments
• insurance, Medicare or relevant service information

Our Patient Support resources will include practical templates to help organise this information.

Supporting family members and carers

MSA can affect the whole family.

Family members and carers may help with appointments, daily activities, communication, mobility, medications, household tasks and coordination of care.

Caring can also be physically and emotionally demanding.

Carers are encouraged to seek support for their own wellbeing and to talk with healthcare professionals if the caring role becomes difficult to manage.

In Australia, Carer Gateway provides free services and support for carers, including counselling, coaching, peer support and respite-related assistance.

Need help finding information?

If you cannot find the information you are looking for, contact National MSA Research and let us know what would be useful.

Feedback from people living with MSA, families and carers helps us identify areas where new resources may be needed.