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This information manual has been developed by SBH Queensland as part of an educational
The objectives of the Project have been:
To increase awareness and understanding amongst health providers and
community agencies in the Metro North region about what living with
Equip adults with SBH and their families with knowledge, skills and
resources to navigate their local community services (health and
To develop digital and print resources to support awareness of SBH
The challenge to assist our clients to age well is an ever increasing issue as the ageing process
raises complex issues for people with SBH and their families as they seek to ensure they
Hydrocephalus, health and ageing issues, independent living, community engagement, learning
with SBH’s means to face the challenges of the future and to maintain their independence and
It is hoped that this information will better equip you to navigate the various issues which can
Ageing Well With Spina Bifida and Hydrocephalus
This project has been made possible through a grant from the
Metro North Brisbane Medicare Local.
The Metro North Brisbane Medicare Local believes in a community
to health care for communities across Brisbane’s north and
Moreton Bay by providing innovative approaches to coordinate
Medicare Locals are a national network and gratefully
PHYSIOLOGICAL1
3
5
7
9
LEARNING AND COGNITION11
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15
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INDEPENDENT LIVING23
25
29
33
COMMUNITY ENGAGEMENT37
41
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MENTAL HEALTH49
53
59
63
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HEALTH69
71
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79
81
AGEING83
87
CONTENTS
SPINA BIFIDA
1
HYDROCEPHALUS
Diagram Sourced
3
What are the symptoms of
SHUNTS AND THEIR SYMPTOMS
Diagram Sourced –
5
6
ARNOLD CHIARI MALFORMATION
Diagram Sourced –
7
8
Doctors Appointments
Continence Routine
Operations
MEDICAL IMPLICATIONS OF SPINA BIFIDA
9
10
LEARNING AND COGNITION
11
12
Aspects of Memory
MEMORY
13
ATTENTION AND CONCENTRATION
Yes No
15
VISUAL PERCEPTION
17
18
INFORMATION PROCESSING
19
20
EXECUTIVE SKILLS
21
Showering
PERSONAL CARE
23
Options for managing urinary incontinenceUrostomy
CONTINENCE
25
27
28
Housing options
HOUSING
29
31
Money Management strategies
MONEY MATTERS
33
NDIS
35
36
EMPLOYMENT
37
39
40
go card
TRANSPORT
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Did you know??SBH Qld’s Occupational Therapist is able to complete your OT driving assessment with you and can also assist with VOSS applications for people in SE Qld.
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Having Hydrocephalus has affected the frontal lobe of the brain. Among other things, this is the
area of the brain that helps us manage language and communication.
We often hear people say that general communication is up to 93% non verbal. The non-verbal
language within communication is the very thing that has been affected by Hydrocephalus.
someone with Hydrocephalus.
that might work.
Problems understanding what people mean
Problems recalling the meanings of some words
Problems maintaining your attention when listening
words such as “um” or “err”
Problems getting your ideas across to others
Problems with writing tasks
Disorganised conversation
Conversation which goes off track
Conversation where the point and sequence are not clear
COMMUNICATION
45
Email [email protected]
07 3844 4600
Minimise distractions when listening is important
Ask the speaker to slow down, repeat what they have said, say something in a different
way, or to make it more simple
Ask the person to write the information down for you
Highlight the key information in written material
communication e.g. that it is better for them to ‘call a spade a spade’
Allow yourself time to think of the words, try to avoid becoming frustrated. Sometimes
silence is OK in a conversation
Try to think of another word with a similar meaning to the one that you want
Try to talk around the word e.g. describe it, rather than name it
Use other modes of communication e.g. hand gestures, writing
Rehearse what needs to be said with a family member
Have safe topics prepared – if you know you struggle thinking of topics to talk about
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BUILDING PERSONAL AND SOCIAL NETWORKS
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MENTAL HEALTH
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Depression Facts* On average, 1 in 7 in Australia people will
experience depression in their lives6 Most will not seek assistance.
* Depression is the number one cause of non-fatal disability in Australia (24%).7
* People with SBH are more likely to to experience anxiety, depression, low self worth and suicidal ideation than the general population. 2 / 3 / 4
* Stress, especially chronic stress, plays a role in depression.11
* Alcohol abuse positively associated with major depression in adults with SBH.3
51
Email [email protected]
07 3844 4600
References
The Hidden Toll: Suicide in Australia
Causes of Death, Australia.
Suicide in Australia Facts* At least 6 Australians die from suicide and a further
30 people will attempt to take their own life every day.8
* Suicide is the leading cause of death for young people aged 15-24.9
* Australians are more likely to die by suicide than skin cancer.5
* More women attempt to take their own lives (and survive).5
* Males are at greatest risk suicide but least likely to seek help.5
* Suicide and attempted suicide figures are likely to be underreported due to difficulty determining intention and stigma around self harm.5
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DEPRESSION
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–
55
Email [email protected]
07 3844 4600
Being depressed is not a sign of weakness.
You do not have to deal with depression on your own.
There are people who can help.
56
References
National Survey of Mental Health and Wellbeing: Summary of Results
The Burden of Disease and Injury in Australia
The global burden of disease: 2004 update
Depression and Anxiety fact sheet
Depression Facts* On average, 1 in 7 in Australia people will experience
depression in their lives6 Most will not seek assistance.
* Depression is the number one cause of non-fatal disability in Australia (24%).7
* People with SBH are more likely to to experience anxiety, depression, low self worth and suicidal ideation than the general population. 2 / 3 / 4
* Stress, especially chronic stress, plays a role in depression.11
* Alcohol abuse positively associated with major depression in adults with SBH.3
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ANXIETY
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Bargaining
GRIEF AND LOSS
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SUICIDE
65
67
Email [email protected]
07 3844 4600
to strengthen your
Mental health issues are not a sign of weakness. You do not have to deal with the situation
on your own. There are people who can help.
References
The Hidden Toll: Suicide in Australia
Causes of Death, Australia.
Suicide in Australia Facts
* At least 6 Australians die from suicide and a further 30 people will attempt to take their own life every day.8
* Suicide is the leading cause of death for young people aged 15-24.9
* Australians are more likely to die by suicide than skin cancer.5
* More women attempt to take their own lives (and survive).5
* Males are at greatest risk suicide but least likely to seek help.5
* Suicide and attempted suicide figures are likely to be underreported due to difficulty determining intention and stigma around self harm.5
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Equipment
Nutrition
JOINT CARE
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KIDNEY HEALTH
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Burns
Friction
SKIN CARE
73
Foot care
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76
Nutrition
Exercise
WEIGHT
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SEXUAL HEALTH
79
For women
For men
PREGNANCY
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AGEING
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“Age is an issue of mind over matter. If you don’t mind, it doesn’t matter.”
“You’re only as old as you feel.”
FUTURE PLANNING FOR FAMILIES
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