A resource

About Muscular Dystrophy

# Muscular Dystrophy (MD) is the term used to describe a group of muscle wasting diseases, which have three common features:

*they are hereditary (in the majority of cases)

* they are progressive

* each produces a characteristic, selective pattern o:

muscle wasting.

# The most common form ls Duchenne muscular dystrophy (DMD), which ls the type that will be considered by this pamphlet.

# DMD has a recessive "X-linked" inheritance pattern, which means the gene is carried by the female and transmitted to the male {except In rare cases where gene mutations occur, and females, or males with no family history of MD can be affected).

# most affected people live into their twenties, while a small minority lives only to their late teens or earlier, and another small number live to thirty and beyond.

# most boys with DMD start using a wheelchair for mobility between about 9 years and mld-teenage years.

Social Worker And MD

The focus of a social worker working with someone with muscular dystrophy could be seen as assisting the client to function in their social environment.

Because they may have a relatively short life span, a majority of clients with muscular dystrophy will be children and adolescents, and therefore a social worker would be likely to work with their families as well. However, the information In this pamphlet also applies to older people with MD who may live independently of their parents.

The social worker for someone with muscular dystrophy may occupy many roles. This booklet is designed to give an idea of some roles they may undertake, and they are categorised under three broad areas of

# coordinator

# counsellor

# liaison/educator.

In the role of a coordinator, the social worker may assist the client and family in:

# locating and utllising SUPPORTIVE COMMUNITY RESOURCES .... these may include their state's and perhaps the national Muscular Dystrophy Association; local, state, national and even international support groups (easy access via the internet! ); respite care, sources of information, including information about transport and entertainment facilities.

# managing FINANCIAL aspects .... a social worker may help to find out eligibility for government and other sources of support to meet the enormous costs involved in treatment and care, home modifications &/or relocation, and transport.

# finding suitable ACCOMMODATION .... the need for a barrier-free family home may arise when negotiating stairs becomes difficult, and then especially once a wheelchair is required for mobility. This may mean having the current house modified or relocating .... Support In Independent living options may be found through supported accommodation services.

# accessing the EDUCATION system .... liaising with school principals and teachers, such that they are aware of, and cater to, the c11ents unique needs, as well as fostering their growth and potential in an inclusional educational setting.

# providing support in finding EMPLOYMENT .... extra assistance in getting into the workforce may be found through supported employment services.

#pursuing LEISURE interests .... the National Electric Wheelchair Sports, and state branches of Electric Wheelchair Sports are groups set up predominantly by and for people with muscular dystrophy (they play rugby league, hockey and balloon soccer) .... QMDA is introducing an annual camp for children and adults with muscular dystrophy to get away and have some fun.

In the role of a counselor (the social worker may do this themselves, or may refer clients to speclalised counseling services)for people with muscular dystrophy, a social worker may need to address:

# TREATMENT OPTIONS .... whilst there is no cure for MD at this stage, a range of treatment options are available .... physiotherapy, to prevent, correct or minimize the impact of muscle contractures; surgery for correction of foot contractures and Insertion of a spinal rod to correct scoliosis; and respiratory aids. The role of a social worker may be vital in this area, as strictly bio-medical view of the options is often the only view of treatment given to clients by doctors .... Whilst the MDA suggests that "alternative" therapies do not help In the treatment of MD, this view may be challenged as it is also known that anything that maintains the clients general health and well-being will minimise or delay the effects of the progression of the MD.

# the client’s COPING STRATEGIES... with respect to changes in personal control and in dealing with issues of mortality.

# SEXUALITY .... whilst sexuality ls an essential aspect of everyones humanness, the experience for many people with MD (and other disabilities) - who are often seen as asexual or dangerously or devlantly sexual, it that sexuality is an area that is avoided by parents and health workers alike.

# reactions and Interactions of FAMILY members .... the social worker may help parents, siblings, partners, & extended family

*put into perspective the role muscular dystrophy

assumes In their lives,

*develop a repertoire of positive coping skills, *be aware of, and use, appropriate supportive

community resources.

# GENETIC COUNSELLING .... for which the purpose is to help the client or family to comprehend medical facts (diagnosis, probable course of the disease, means of management), the heredity factors, and dealing with the possibility of recurrence .... this may include DNA &/or SCK (serum creatlne klnase) testing to diagnose MD or determine carrier status of mother, sisters, aunts of the client.

In the role of liaison/educator the tasks of a social worker may include:

# liaising with numerous HEALTH WORKERS .... which could include doctors, physiotherapists, occupational therapists, nutritionists, naturopaths, and acupuncturists that are involved with the client .... communication and cooperation between these different therapists will enable a consistent, integrated and holistic approach to the treatment and care.

# provide INFORMATION to the client, their family, and other people in their life .... perhaps teachers and employers so they understand how MD affects the clients, with a focus on their abilities, and not just the disability.

# act as an ADVOCATE .... where and when this is required and appropriate, and provide client with information and skills to enable self-advocacy.

# be an active SOCIAL EDUCATOR/CHANGE AGENT .... by challenging unjust social and physical structures, exclusion, prejudice, stereotypes and violence that marginalise and disempower people with disabilities.

Where To Next

# Government (.Qld)

- Department of Families, youth and Community Care 3224 8045

- Centrelink: pensions 13 23 O0

- DIAL (Disability Informationand Awareness Line 3224 8444

# Qld Muscular Dystrophy Association

3278 1111

# Accommodation Services

- Centrecare (North) Nundah 3266 7688

- Unicare (Central) Kangaroo Point, plus other suburbs 3891 1333

- Centrecare (South) Sunnybank 3345 7444

# Employment Services

- EPIC (North) Lutwyche 3857 5085

- COMEPASS (Central) Buranda 3392 1159

- ACCESS (South) Mt Gravatt 3849 7422

- # Leisure/Recreation
- Jason liverton’s leisure and disability consultancy service 3273 6708

            - Qld Electric Wheelchair Sports (Scott Harry) 3353 3521
            - Access Arts 32606306
            - NICAN                                                     1800 806 796

- National Electric Wheelchair Sports (Michael Baptiste) (02) 9613 1429

# Transport
            - TransInfo                                            13 12 30
            - Citytrain Passenger Service               3235 5555
            - Maxi Taxi (Yellow Cabs)                   3391 1000

# Brisbane City Council

- Disability Services section 3225 4416

You Are Visitor Number Since 25 November, 1999

A Resource

Compiled by: Suzanne Schuhmacher 1998

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