brief - parkinson's western australia...diagnosed or affected by a diagnosis of multiple system...

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Tel: 1800 644 189 www.parkinsons.org.au It is recommended that a diagnosis of MSA is made or confirmed by a Neurologist who has an interest in Movement Disorders. This will require a referral from a General Practitioner. Ongoing monitoring by a medical specialist is essential. It is essential that the family unit is supported from the time of diagnosis as dealing with the implications of MSA can be far reaching. Discussions around options of accessing respite and residential care may be of benefit and guidance through the Aged Care Assessment Team (ACAT) process is recommended. Appointing an Enduring Power of Attorney for financial matters, an Enduring Guardian for medical matters or making an Advanced Health Care Directive are considerations for future planning. The information in this brochure is intended as a guide for those diagnosed or affected by a diagnosis of Multiple System Atrophy ( MSA). All symptoms and health issues should be discussed with the treating medical team. For further information about MSA contact your State based Parkinson’s office. An MSA Information Manual is available from Parkinson’s Victoria (03 8809 0400) . The Multiple System Atrophy Trust can provide further resources and research details. www.msatrust.org.au Complied by Janet McLeod and Victor Mc Convey (Parkinson’s Nurse Specialists) Endorsed by Parkinson’s Australia Inc. and distributed by Parkinson’s WA Inc. This brochure was made possible by a generous donation from the Main family in memory of Maggie. January 2017 © Parkinson’s Western Australia Inc MULTIPLE SYSTEM ATROPHY (MSA) brief Providing support for people with Parkinson’s and Related Disorders and their families and carers

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Page 1: brief - Parkinson's Western Australia...diagnosed or affected by a diagnosis of Multiple System Atrophy ( MSA). should be discussed with the treating medical team. For further information

APPROPRIATE TREATMENT CHOICES Young onset Parkinson’s usually progresses slowly and may not require medication for some time. Medication used for Parkinson’s is aimed at managing symptoms and does not reverse the condition’s progress. The decision to commence treatment should be made in conjunction with the medical specialist.

While medication improves quality of life, treatment options depend on the symptoms experienced and their impact. The gold standard treatment for Parkinson’s is levodopa (dopamine replacement). Other treatment options are available and should be discussed with the treating medical specialist.

The long term use of levodopa may result in side effects such as dyskinesia (involuntary movements) and dopamine dysregulation syndrome (overuse of levodopa). Other forms of medication may result in obsessive compulsive behaviour such as hyper sexuality, gambling and excessive shopping.

The medication regime prescribed by the doctor should be adhered to. The inclination to self medicate should be resisted.

Short term side effects may be experienced. These include nausea and dizziness which often ease naturally or may be managed by non-medical means.

DEEP BRAIN STIMULATION Those diagnosed with young onset Parkinson’s are more likely to be considered for deep brain stimulation (DBS). Appropriate selection for DBSis vital to ensure optimum outcome. Candidatesconsidered for DBS should:

demonstrate a positive response tolevodopa

be able to tolerate the surgicalprocedure (patient is usually awake)

have developed motor fluctuations,dyskinesia or non-responsive tremor

not demonstrate paranoia or psychosis

Be aware DBS is a treatment and not a cure. Ongoing medication is necessary.

PREGNANCY Females with young onset Parkinson’s may consider pregnancy choices. There is minimal data on the safety of medications and the impact of the pregnancy.

Compiled by Janet McLeod (Parkinson’s Nurse Specialist), Parkinson’s Western Australia Inc., endorsed by Parkinson’s Australia and distributed by Parkinson’s Western Australia Inc.

YOUNG ONSET PARKINSON’S

Tel: 1800 644 189 www.parkinsons.org.au

July 2015 ©Parkinson’s Australia

It is recommended that a diagnosis

of MSA is made or confirmed by

a Neurologist who has an interest

in Movement Disorders. This will

require a referral from a General

Practitioner. Ongoing monitoring by

a medical specialist is essential.

It is essential that the family unit

is supported from the time of

diagnosis as dealing with the

implications of MSA can be far

reaching.

Discussions around options of

accessing respite and residential

care may be of benefit and

guidance through the Aged Care

Assessment Team (ACAT) process

is recommended.

Appointing an Enduring Power of

Attorney for financial matters, an

Enduring Guardian for medical

matters or making an Advanced

Health Care Directive are

considerations for future planning.

The information in this brochure is intended as a guide for those diagnosed or affected by a diagnosis of Multiple System Atrophy ( MSA). All symptoms and health issues should be discussed with the treating medical team.

For further information about MSA contact your State based Parkinson’s office.

An MSA Information Manual is available from Parkinson’s Victoria (03 8809 0400) .

The Multiple System Atrophy Trust can provide further resources and research details. www.msatrust.org.au

Complied by Janet McLeod and Victor Mc Convey(Parkinson’s Nurse Specialists)

Endorsed by Parkinson’s Australia Inc. and distributed by Parkinson’s WA Inc.

This brochure was made possible by a generous donation from the Main family in memory of Maggie.

January 2017 ©Parkinson’s Western Australia Inc

MULTIPLE SYSTEM ATROPHY (MSA)

brief

Providing support for people with Parkinson’s andRelated Disorders and their families and carers

Page 2: brief - Parkinson's Western Australia...diagnosed or affected by a diagnosis of Multiple System Atrophy ( MSA). should be discussed with the treating medical team. For further information

What is Multiple System Atrophy?

Multiple System Atrophy (MSA) is an umbrella term given, in 1969, to three previously described conditions. These are Striatonigral Degeneration, Sporadic Olivopontocerebellar Atrophy and Shy-Drager Syndrome. MSA is included in the Atypical Parkinson’s conditions.

MSA is now divided into two subtypes depending on the predominant motor symptom, these are known as MSA-P (Parkinsonian) and MSA-C (Cerebellar). MSA-P refers to stiffness and slowness features. MSA-C refers to balance.

The cause of MSA remains unknown but it is associated with a protein, alpha-synuclein and atrophy or shrinking of nerve cells in multiple areas of the brain.

Males and females are equally affected and 50-60 is the most common age group for onset of symptoms. It is a fairly rapidly progressive condition.

It is a relatively rare condition thought to affect 1200 Australia wide.

Genetic factors have been investigated but it is usually a sporadic condition. There is no proven link between chemicals or toxins.

Medication used in the treatment of Parkinson’s is usually of little or no benefit in MSA.

Diagnosis of MSA is based on the clinical

signs which may resemble Parkinson’s with

some unique differences or ‘red flags’.

The red flags which are suggestive of MSA

are;

• Urinary problems

• Falls due to blood pressure changes

• Impotence

Other common symptoms include:

• Muscular stiffness

• Gait ( walking ) changes

• Balance difficulties

• Slow movement ( Bradykinesia )

• Mild tremor

• Facial expression changes

• Speech changes

• Slower thinking ( Bradyphrenia)

• Unusual emotional responses

• Noisy day breathing

• Overnight snoring

Magnetic Resonance Imaging (MRI) may

show the ‘hot cross bun’ sign which

suggests a diagnosis of MSA.

As there are currently no treatments available for MSA, management of the symptoms and support for the person with the condition and their family is essential.

This is available through the multidisciplinary team approach.

• A Physiotherapist will assess mobility, provide appropriate walking aids and help maintain safe mobility as long as possible.

• A Continence Nurse Advisor can help manage urinary symptoms.

• A Speech Pathologist will assess and manage swallowing and communication changes.

• An Occupational Therapist will assess and provide equipment and strategies to maintain independence.

• Specialist nursing care is available through Movement Disorder and Parkinson’s Clinics

• Social Workers are essential in organising support systems and respite

• Clinical Psychologists can assist with emotional needs and mood changes

• Parkinson’s Nurse Specialists also specialise in MSA.