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VOL-2

In this issue: SEXUALITY & BRAIN INJURY discover your inner goddess discussing sex brain injury & ageing

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discover your inner goddess BRIDGE VOLUME 2 - March 2011

how to reclaim your mojo after a brain injury

ISSN 1448-9856 General Editor: Project Manager: Contributing editors:

Barry Morris Glen Farlow Clare Humphries Anna Petrou Gerowyn Hanson

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Synapse PO Box 3356 South Brisbane BC 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: biaq@braininjury.org.au W: www.braininjury.org.au Bridge is produced by Synapse (formerly Brain Injury Association of Queensland). Published quarterly, it welcomes contributions and news items, especially from members. Advertising rates are available on request. Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding. VISUAL DIFFICULTIES: For those with visual problems, go to www.synapse.org.au and view the free online version which can be expanded on screen. DISCLAIMER: While all care has been taken to ensure information is accurate, all information in this publication is only intended as a guide, and proper medical or professional support and information should be sought. The Association will not be held responsible for any injuries or damages that arise from following the information provided. Material within does not necessarily reflect the policies of Synapse or the staff and Board of Management. References to other organisations and services do not imply an endorsement or guarantee by Synapse.

... and I found 28 positions we haven’t tried yet

Discussing sex

why can it be so hard to discuss something that is so natural?

My back is hurting already!

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brain injury & ageing

how to minimise the double whammy

Supported by financial assistance from

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INDEX 03 05 07 10 11 13 15 17 19 21 23 23 25 27 29 1 / BRIDGE MAGAZINE

Sexual changes after a brain injury Sexuality & a brain injury Discover your inner goddess Pushing through denial Intimacy & sexual activity Discussing sex Disinhibited & inappropriate behaviours Hearing difficulties Hormonal imbalances after a brain injury Hi ho, hi ho, it’s off to work I go Supporting memory in dementia Now & then Contraception Why me? Brain injury & ageing

Important issues to discuss Personal account of one woman’s struggle Reclaiming your mojo after a brain injury Accepting that you have acquired an injury Communication, difficult issues & adapting It can be hard to discuss this natural activity Tips for dealing with tricky sexual behaviour Various problems that can occur post-injury Support for when hormones are unbalanced Personal account on returning to work Findings of a study by the University of Qld All about our name & logo changes lately The many ways to avoid pregnancy Possible answers to why bad things happen Minimising the effects of the double whammy


bridging THE GAP

Jennifer Cullen CEO of Synapse

Sex, lies and brain injuries We humans have had the habit throughout history of trying to define what normal sex is. We then spend a lot of effort criticising, ostracising, censoring, torturing, imprisoning or killing the large numbers of people who disagree. It might be sex before marriage, sleeping with someone of the same sex, or wearing revealing clothing — there is always somewhere in the world where not conforming could land you in jail or have you facing a firing squad. Even in the western world, we can get very serious and angry about what kinds of sex are ‘normal’ and ‘abnormal’. On the fun side, we often joke about sex and yet we are strangely reluctant to talk about it seriously, particularly if we have a sexual problem.

Our sexuality is at the very core of who we are, and is far more than just how we express ourselves sexually. Given the variety of effects of a brain injury, it is little surprise that it will usually affect our sexuality, but it is rarely, if ever, discussed. Why do brain injury rehabilitation and support services ignore how a brain injury affects our sexuality? Understandably, in the early days there are far more important issues to worry about. Even months after acquiring a brain injury, fatigue, other health problems and ongoing rehabilitation often mean that even the idea of having sex takes a back seat, so it is not surprising that sexual issues rarely come up during rehabilitation.

However, there is also our extreme reluctance to discuss, let alone admit, to having sexual difficulties. These dilemmas made sex one of Woody Allen’s favourite topics for exploration, such as his 1972 film Everything You Always Wanted to Know About Sex (But Were Afraid to Ask). Hopefully this issue of Bridge may help to answer some of the questions about sexuality after a brain injury that you have been afraid to ask. We would also encourage to seek support from appropriate staff on your rehabilitation team, or relevant medical professionals. Sex is one of the great joys of life, and rediscovering this should be a key goal when recovering after a brain injury. It should also be fun; as Woody Allen said, “Sex is the most fun you can have without actually laughing.”

SynapsebyisHome funded Home and Synapse is funded andbyComAUSTRALIAN NETWORK OF BRAIN ASSOCIATIONS AUSTRALIAN NETWORK OF BRAIN INJURYINJURY ASSOCIATIONS Care, a joint Commonwealth munity Care,Community a joint Commonwealth and QLD Synapse Inc. Tel: 07 3137 7400 Email: info@synapse.org.au Web: www.synapse.org.au andprogram State/Territory program providingQLD Brain Injury Association of Qld Tel: 07 3367 1049 Email: biaq@braininjury.org.au Web: www.braininjury.org.au State/Territory providing funding funding and assistance for Australians Injury Australia 1800 272Email: 461 admin@braininjuryaustralia.org.au Email: admin@braininjuryaustralia.org.au Web: www.braininjuryaustralia.org.au and assistance for Australians in need. AUS BrainAUS Injury Brain Australia Tel: 02 9591Tel: 1094 Web: www.braininjuryaustralia.org.au in need. NSW Brain Injury Association of NSW Tel: 02 9868 5261 Email: mail@biansw.org.au Web: www.biansw.org.au NSW Brain Injury Association of NSW Tel: 02 9868 5261 Email: mail@biansw.org.au Web: www.biansw.org.au VIC BrainLink Services Tel: 03 9845 2950 Email: admin@brainlink.org.au Web: www.brainlink.org.au VIC BrainLink Services Tel: 03 9845 2950 Email: admin@brainlink.org.au Web: www.brainlink.org.au TAS SA NT

Injury of Association 03 6278 7299 Email: enquiries@biat.org.au BrainTAS Injury Brain Association Tasmania of Tasmania Tel: 03 6278Tel: 7299 Email: enquiries@biat.org.au Injury Network of South Australia 08 8217 7600 Email: info@binsa.org BrainSAInjury Brain Network of South Australia Tel: 08 8217Tel: 7600 Email: info@binsa.org NT Community Somerville Community Somerville Services Services

08 8920 4100 Email: scs@somerville.org.au Tel: 08 8920Tel: 4100 Email: scs@somerville.org.au

Web: www.biat.org.au Web: www.biat.org.au Web: www.binsa.org Web: www.binsa.org

Web: www.somerville.org.au Web: www.somerville.org.au

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Sexual changes after a brain injury Talking about sex can be embarrassing, but it is important for the person with brain injury and their loved ones to discuss any issues that arise.

Acquired Brain Injury can have a number of consequences for an individual’s sexual functioning. The rehabilitation stage Impulsivity, disinhibition and lack of awareness may lead to rehabilitation staff getting unwanted sexual attention from the person with a brain injury. The medical team, family and friends need to have a common response to inappropriate sexual behaviour that will assist the person to regain control over basic impulses. This can particularly be a problem for males from their late teens to mid-twenties when sexual urges are strongest. Some of this behaviour may include fantasising, lewd verbal responses, disrobing and/or masturbating in public, impulsiveness, and touching others. Understanding from the family Families and partners may have trouble understanding these sexual changes and can react negatively. It is therefore important to understand how impulsivity, disinhibition and lack of awareness can cause sexual changes. Encourage the person with the brain injury to take control over these impulses, if this is a reasonable expectation. All members of the family should work to become comfortable in discussing sexual issues and applying consistent responses to inappropriate behaviour. Common changes Sexual changes are common after a brain injury. Although we are all sexual in nature, there is a great deal of stigma surrounding sexual behaviour in the wrong place or time. Some of the more common changes include: • loss of libido or sexual drive 3 / BRIDGE MAGAZINE

• inability to achieve or maintain erection • inability to orgasm • premature ejaculation • pain and discomfort during sex • hypersexuality (increased desire for sex) • sexual disinhibition e.g. talking excessively about sex or inappropriate touching • reduced sexual responsiveness or desire for intimacy. Such changes may be a direct result of damage occurring to particular brain structures underlying sexual functioning. Other biological causes include damage to genital organs, muscles and bones, spinal cord and peripheral nerve damage, medical conditions, hormonal disturbance and medication side-effects. Changes may also occur indirectly due to a variety of physical and psychosocial changes. Psychological changes The following psychological changes, seen following an Acquired Brain Injury, can sometimes contribute to sexual changes also. • Low motivation • Medication • Diabetes or hypertension (high blood pressure can reduce libido) • Depression, stress or anxiety • Emotional reactions e.g. anger, embarrassment, shame and fear of rejection • Personality changes e.g. aggression • Cognitive problems e.g. distractibility, perceptual disorders and memory problems • Communication deficits e.g. aphasia or missing social cues • Loss of self-confidence regarding personal attractiveness • Poor social skills and impaired self-control

• Social avoidance and isolation • Relationship breakdown You can seek advice from a Neuropsychologist with regards to these changes, and they may be able to assist you in managing them. Assessment Seeking professional advice can be an embarrassing and sensitive issue as sex is usually a very personal and private aspect of life. If so, it may be easier to first discuss sexual problems with a general practitioner during a visit for other health reasons. Assessment of sexual problems can be a vital first step in learning to manage or discover treatment options. Assessment may involve an interview, questionnaires, physical examination, and neurological and medical tests. Psychologists and psychiatrists may also be involved in the assessment and treatment of sexual problems. Management of Sexual changes Partners and family members’ reactions Partners and family members play a significant role in adjusting to sexual changes after a brain injury. Strategies include: • greater understanding through information on how to support the person • different techniques and compensatory strategies e.g. different ways of giving and receiving pleasure with the person • altering expectations and negotiating about how often, how long and the type of sexual activity the person can achieve • being assertive and sensitively communicating personal views • making changes to lifestyle and routines that improve quality time together.


Another important issue is the increased vulnerability that people may experience due to cognitive impairment and emotional distress. The person may not sense when they are at risk, not know how to cope with unwanted sexual advances, or have trouble understanding the consequences of their actions. Be aware of these issues and discuss any concerns with a professional. If it feels too difficult to discuss these issues directly with the person with a brain injury, a friend or other family member may be able to recommend self-protection strategies or discuss general safety issues. Children’s social and sexual functioning A child’s social and sexual development may be arrested, or can revert to a previous level following an Acquired Brain Injury. Less commonly, a child may develop physical and behavioural changes earlier than normal (often referred to as precocious puberty). Families and schools vary greatly in their approaches to educating children about sexual issues and behavioural management. Parents and teachers can look at resources available in the community, such as family planning, sexual health clinics, and support from professionals specialising in Acquired Brain Injury. Masturbation A family member may need to be told that masturbation is an appropriate way to deal with sexual urges, but in the privacy of their own room. It is important to establish ground rules to protect the rights and privacy of others, so when, where and how need to be discussed. In some cases, a partner or spouse may

continue in a caring role but no longer wish to maintain a sexual relationship. In these cases, it needs to be stated clearly and consistently that masturbation will be the only option to sexual urges. Treatment for sexual problems Professionals can help individuals cope with a variety of physical and psychosocial changes. Following assessment, specific treatment of sexual problems may involve education, learning new skills and behavioural techniques, physical rehabilitation, aids and medical treatment. Specific forms of treatment may include psychological support, and medical or surgical approaches. Psychological support A psychologist, neuropsychologist, or social worker can provide sexual and marital counselling to couples to enhance their understanding of sexual changes, communication skills, problem-solving, conflict resolution and caring behaviours. Professionals can also provide literature, audio-visual aids and advice on sexual positions, techniques and aids. Neuropsychologists often have an extensive educational background in Acquired Brain Injury and specific issues that may complicate management strategies. It is sometimes best to visit a Neuropscyhologist then, as they can have a more holistic view. A psychiatrist may prescribe medication for either psychological or physical problems. Medical and surgical approaches The medical management of sexual problems is usually most applicable for musculoskeletal,

case study Jill’s husband Paul experienced personality changes after his brain injury; his behaviour was childlike and immature, and he became overly dependent on Jill who felt more like a mother figure than wife, friend and lover. She read some information about the effects of brain injury, organised regular respite care, and learned behaviour management strategies for encouraging Paul to be more independent. As a result of Jill’s increased understanding, some lifestyle changes and new skills, she and Paul now spend more quality time together and their sexual relationship has improved. neurochemical and vascular disorders. Some examples include hormonal replacement, new medication e.g. anti-spasticity drugs or a change of current medication, neurosurgical and orthopaedic procedures. Things to remember • A brain injury can alter the way people experience and express their sexuality • Common problems include reduced sex drive, difficulties with sexual functioning (such as erectile problems) and behaving sexually at inappropriate times • Talking about sex can be embarrassing, but it is important for the person with brain injury and their loved ones to discuss the various issues and seek professional advice.

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A to Z - SEX

Sexuality & brain injury

A Animals & sex Sexuality is an area of human behaviour that can bring out the most judgmental attitudes and heaviest penalties for breaking the rules on what is considered normal sex. But a quick look at sex in the animal kingdom shows that defining ‘normal’ sex can be a tough job. Banana slugs are hermaphrodites - they can be both male and female. When they have sex, they choose what they want to be, and the male often chews off his own penis after ejaculation so that it forms a plug in the female and stops other males from trying to mate with her. Sea hares are a type of mollusc that have both penises and vaginas, and often join up in a big circle for group sex, at times changing from the male to the female role during the act. Same sex bonding is common in the animal kingdom, with examples of sheep, beetles, dolphins, fruit bats and orangutans ignoring the opposite sex. Pairs of male flamingos have been observed mating, building nests, and even raising foster chicks. What about sex itself? Human males have often been criticised for lack of duration, but some animals are even faster. Ducks and kangaroo rats copulate in about two minutes. Whales and elephants take around 30 seconds while our close cousins, the male chimpanzees, only take about 10 to 20 seconds to reach orgasm. Mosquitoes are usually finished within three seconds, but there are some insects who indulge in intercourse for up to 60 hours. Many of us will have heard that the female praying mantis may eat the male after sex. What is little known though, is that she may eat his head during sex (WARNING – don’t try this at home). What is interesting is that he manages to keep going and finish the job, something that hasn’t been tested in humans but many women reportedly suspect the human male just might be capable of the same stamina. ◗◗

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Darlene M. Tymn talks about the many sexual issues following her husband’s brain injury Relationships are in progress when brain injuries occur. We get through the immediate crisis by default because of the many players in the incomprehensible medical drama that is unfolding. We are all numb temporarily. The brain-injured person seems protected by coma and post traumatic amnesia. Family members and friends are suspended in grief and follow programmed routines: go to work, send flowers, visit the patient, pick up the dry-cleaning, mow the lawn, attend parent-teacher conferences, accept the doctor’s wisdom and pay the bills. Eventually we get the real picture — brain injury is devastating and rehabilitation is a long haul. It is time to exhale and recognise the permanent differences in our lives. Rehabilitation tries to restore the injured person to maximum pre-morbid capabilities. That goal has built-in assumptions and expectations for the survivor’s family. Yes, I am his wife. Yes, I was a model of efficiency, emotional strength and physical stamina when the tragedy struck. But, did anyone ask me if I was happily married at the time of the auto accident? Did anyone ask if I wanted the responsibility of representing his needs and

defending his rights? What about sexuality and brain injury? sexuality issues are ignored After 25 years of marriage, I knew my husband best and recognised my critical role. I had compassion for him. I had responsibilities for managing our property and finances. I had confidence in my problem-solving abilities. I was an old hand at juggling a dozen responsibilities well. So, for the past five years, I have been advocate, rehabilitation team member and caregiver at home on weekends. As expected, I automatically stepped into the rhythm of these additional roles. Later I realised that the family education series, support group meetings, books and articles that I turned to failed to address the uncomfortable issue of sexuality for survivors of brain injury. Yet the issue of sexuality became the rock of my renewed self-esteem and survival. I would accept the challenges of rehabilitation, except for renewing marital relations, regardless of the physical and psychological value of intimacy for my spouse’s recovery. No outsider was making it an issue; the struggle was all in my head. I was angry, hurt, stubborn, and free. I could choose between what he wanted and I needed. I chose


me. I had done so much taking care of him as he denied his alcoholism, criticised my physical appearance, left the “sweat jobs” around the house to me, pursued his hobbies, and expected regular sexual gratification despite my years of unsatisfied intimate needs. Now he needed caretaking in the very literal sense, perhaps for the rest of his life. Only because he was braininjured and an unequal opponent did I have the courage to draw the line at sexual relations. renewing sexual intimacy The home visits started before the eightmonth in-hospital rehabilitation ended. The home visits with overnight stays began with us sharing the same bed and experimenting with sexual intimacy. I learned several things quickly: 1 He was capable of penal erection and ejaculation 2 I did not want sexual relations with a manchild 3 I did not want to pick up where our unsatisfactory marriage had left off 4 I felt the kids needed some “show” of a resumed relationship to signal a hope of “normalcy” 5 I could not psychologically flip-flop from caretaker cleaning up bowel accidents to sex mate. My decision presented a number of challenges. How do I respond to his requests for physical intimacy? How do I explain my objections to a cognitively disabled, egocentric, emotionally insecure, sexually adolescent partner with excellent long term memory of the “good old days?” How do I juggle guilt, anger, compassion, marital “appearances” and personal survival? Where can I get help? LACK OF SUPPORT One foray into psychological counselling left me more angry than before. Why had I not left the man sooner? Why was my identity so tied to his? These questions failed to address the changed playing field. If I should have then, I could not now for different reasons. When I found the courage to share our private marital past and current sexuality issues with the female psychologist on my husband’s rehabilitation team, I thought “How could I lose? She was a woman, a trained therapist and familiar with both brain injury and my spouse’s deficits.” She had no answers and no apparent empathy. “When you figure it out, Darlene, we’ll write the book on it.” That response hurt but it also helped. I got mad again. You can bet I would figure it out and then write the book by myself! ending the sexual relationship It was like any other challenge. You do what you have to do, learn as you go, make mistakes, two steps forward, one step back and stay focussed on the target. The first practical thing I did was to coach my husband through

successful self-masturbation. Now, if he needed release he could manage the process personally with the aid of a Playboy magazine if necessary. My only task was to make sure curtains or doors were closed and lights out to ensure his privacy and prevent embarrassment to others. I also reinforced what I said with how I acted. As one of his caretakers, I conscientiously eliminated behaviours that were old marital habits. I moved to my own room upstairs with a single bed, was always fully clothed in his presence, closed the door when I used the bathroom, did not make sexual or suggestive comments or gestures, eventually eliminated his requests for “tucking in” at bedtime, gave him a quick kiss only when I felt like it and not because he asked, and then gently restrained his hands to remind him that touching my breasts was not okay. That was the easy part. The hard parts are the mental and emotional components of my decision juxtaposed with his short-term memory impairment, perseveration and other reduced capacities. So over the months and years I repeated my needs, my decision and my answers again and again. Sometimes I was patient; sometimes I was angry. Sometimes I lectured at length; other times a simple “Not tonight, dear” sufficed. His litany remains pretty much unchanged, although the sex questions are asked less frequently: • Why won’t you go to sleep with me? • When can I hold your boobs? • Why don’t you wear your wedding ring? • If you sleep with me tonight I promise not to touch you. • Yes, you’re a real bitch sometimes but I can take it. • Thanks for trusting me to take a shower by myself. • Honey, I had a really big poop. Aren’t you proud of me? • When can we do return visit planning? • Hello, mummy. It’s so good to hear your voice. • Can I watch two movies today? • Will you make pancakes for breakfast? • I have a joke for you. • Do you love me? • Will you come to bed with me tonight? Never? It is a heart-wrenching tug that is hard to resist sometimes but, for now, we are doing the best that each of us can. This article is reproduced with the kind permission of The Perspectives Network, Inc. It’s primary focus is positive communication between persons with brain injury, family members, caregivers, friends, health professionals and community members, in order to create positive changes and enhance public awareness and knowledge of Acquired Brain Injury. Email TPN@tbi.org or visit www.tbi.org for more information.

B Bacterial vaginosis This is the name of a condition in women where the normal balance of bacteria in the vagina is disrupted and replaced by an overgrowth of certain bacteria. Your vagina commonly maintains a delicate balance between ‘good’ and ‘bad’ bacteria. A small shift in this balance can disrupt functioning and cause uncomfortable sensations. There are many different things that cause this, and bacterial vaginosis is just one form. It is sometimes accompanied by a change in discharge, odour, pain, itching, or burning sensation. Bacterial Vaginosis (BV) is not to be confused with a Yeast infection, and is thought to be caused by an overgrowth of bacteria already present in the vagina. BV is the most common vaginal infection in women of child-bearing age with some 40% of all vaginal infections being diagnosed as BV. Not much is known about how women get BV, except that it is caused by the bacteria in the vagina. It is not considered a sexually transmitted infection, but can be just as uncomfortable and irritating. Any woman can get it – however, some activities or behaviours can upset the normal balance of bacteria in the vagina and put women at increased risk. These include having a new sex partner or multiple sex partners, douching, and using an intrauterine device (IUD) for contraception. Diagnosis is made by obtaining a vaginal swab from inside the vagina which is then tested for characteristics of BV. This is a relatively painless procedure, although somewhat uncomfortable, and is very similar to your regular pap-smear. It is important to go to your doctor if you are having any of the aforementioned symptoms, as some women experience little, if none, of the symptoms described. Treatment is simple and usually comes in the form of antibiotics. Some places will recommend using probiotics (like Inner Health Plus) to treat the condition also, and there has been research to both support and contradict the efficacy of this. Sometimes symptoms can recur even after treatment with antibiotics. Over half of women treated will experience a second episode within 12 months. It is important to treat these symptoms the same, and go to your doctor about it. It is important to consult your doctor if you think you may have BV, as untreated it can cause some serious complications. If you are pregnant, the risks and complications increase and can include premature birth, premature labour, and infections of the uterus and amnionic fluid. ◗◗

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C Condoms

Discover your inner goddess by Gerowyn Hanson

While widely accepted in modern times, condoms have generated some controversy, primarily over what role they should play in sex education classes. They are considered unacceptable in almost all situations by certain religions, notably the Catholic church. When used properly condoms are very effective at preventing pregnancy and the spread of sexually transmitted infections (STIs). A brain injury can leave someone with impulsivity issues and risk-taking sexual behaviour. Having condoms handy can be a way to minimise some of these risks. Condoms have been one of the most popular methods of contraception in the world since the 19th century, but they have a very long history: 1000 BC : The ancient Egyptians used a linen sheath for protection against disease. 100 - 200 AD: Earliest evidence of condom use in Europe in cave paintings at Combarelles in France. There is also some evidence that some form of condom was used in imperial Rome. 1500’s Syphilis epidemic spreads across Europe gave rise to the first published account of the condom. Gabrielle Fallopius claims inventing a sheath of linen to protect men against syphilis. 1700’s Condoms made out of animal intestines began to be available. However, they were quite expensive and the unfortunate result was that they were often reused. This type of condom was described at the time as “an armour against pleasure, and a cobweb against infection”. 1885 The first rubber condom is made - 1-2 mm thick, seams down the side, and reusable! This makes complaints about what we use today seem trivial. If you find the condom too thick, or reducing sensations, you can always try the new ‘ultra thin’ condoms on the market, which will hopefully assist. Anything is better than a 2mm thick sheath of rubber. ◗◗

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A couple of years ago at the Eumundi Markets in Queensland, I bought a T-shirt of Marilyn Monroe striking a famous pose demanding, “Worship me like the Goddess I am”. I had to have it. These words became a mantra for me. After a car accident left me with a mild brain injury, I had been suffering low self-esteem and anxiety attacks for several years. My thinking would turn particularly negative whenever my partner became stressed about trying to cope with my complex condition. Believing he was rejecting me, I felt the brain injury had deprived me of my sexuality and worth as a woman. It made me feel unattractive, and I lost selfconfidence along with my libido. Acquired Brain Injury (ABI) is basically very un-sexy. Acquired brain injury & SEXUALITY A brain injury impacts on sexuality in diverse ways, whether it is parts of the brain directly connected with sexuality, or also sensory-

motor perception, emotional responses, social behaviour, anxiety, depression, sleep and hormones. THE BIGGEST SEXUAL ORGAN In the words of Beverly Whipple, the biggest sexual organ is the brain1. Neural research shows that astonishingly, even people with spinal damage can experience orgasm; while on the other hand, drugs that enhance sexual function do not necessarily arouse sexual desire2. These observations indicate that sexuality has more to do with the brain rather than the genitals. Biochemical substances found in the brain such as serotonin, dopamine, oxytocins and hormones produced by the pituitary gland also play a part in sexual feelings. Damage to the synapses interferes with the production and flow of these chemicals, which contributes to mental health difficulties like depression and anxiety.


D Does size matter When it comes to sex, there tends to be a preoccupation with size; males complain about penis size, and women about the size of their breasts. For females, the breasts are seen as one of the most feminine features, and it can often feel as if all men

are rating them on size. When women are smaller breasted, they sometimes feel less feminine, and less attractive. Recent surveys have the average cup size for Australian women around a C or D, but this doesn’t take into account body size. Obesity rates in Australia are rising, and the breasts are just fatty tissue, so cup size may just be increasing with obesity.

How to reclaim your mojo after a brain injury

CHALLENGE THE DEMONS People who are anxious and depressed are often running pessimistic thoughts through their minds. Negative self-talk is a mental health concern which can be addressed with the help of a trained GP, Neuropsychologist, psychologist, or counsellor. These professionals teach techniques such as Cognitive Behaviour Therapy (CBT), for instance, to help challenge unhealthy beliefs about ourselves. It is also possible to learn CBT from self-help books or interactive online sites (e.g. Mood Gym, e-couch). You can get to know your thinking patterns and develop alternative ways of reacting toward situations. In my case, I believed I was unattractive, especially to my partner. My GP and psychologist helped me to examine my harsh beliefs. I began to see that many aspects of my character indicated someone who had a lot more attractive attributes than I had given

myself credit for. I know for instance, that I am committed to my health and fitness routine, adventurous, artistic, and compassionate, to name just a few. Clearly, the view I held of myself was out of sync with reality, and I slowly realised there was nothing logical to indicate that I was so unappealing to my partner. IT’S ALL IN YOUR HEAD Besides, according to my psychologist, the concept of “attractiveness” is not something defined only by looks. Character traits such as compassion, humour, courage, self-motivation, intelligence, honesty, helpfulness, self-respect, and confidence are some of the qualities that define an attractive personality. While physical appearance is initially important, research suggests that these attributes matter in the long term — in other words, sex appeal is all in our heads. I accepted this intellectually, but my feelings lagged behind and it took time for my “Marilyn

Having larger breasts is not always a positive, as there can be health issues. Back problems are common, as well as obesity due to a tendency to avoid sport and exercise. So use whatever size you have. There are many things out these days for women who have smaller breasts (like ‘chicken fillets’) and women who are larger can now apply for Medicare funding to get their breasts reduced if they’re causing health problems. Men have many similar difficulties. It is assumed that women only like men with larger penises, as women’s sexual pleasure supposedly increases with penis size. This is not always true. The majority of nerve endings are located in the clitoris and the vaginal opening, as well as the g-spot, each well within reach of a smaller penis. What is important is communication. Different positions can allow for stimulation of different areas, so finding out what works best for you both is important. Books like Dr Sadie Allison’s Ride ‘em Cowgirl explain what can work and why, and provide helpful tips on managing size, as men with larger penises can have just as many problems pleasuring their partner. So big or small, it is important to work with what you’ve got, and be proud of it. ◗◗

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E Exhibitionism

Exhibitionism, or “flashing”, is the psychological need and pattern of behaviour related to exhibiting naked parts of the body in an extravagant, often sexual way, to captivate the attention of another. Flashing usually involves the female breasts, genitalia or buttocks of either gender, or the male “flasher” who indecently exposes his penis to an unwilling observer. Exhibitionism can also refer to a couple engaging in sexual acts where being seen or caught is highly likely. Exhibitionism or ‘flashing’ often occur in a situation where exposed parts would not normally be exposed, such as public places, with the intention of shocking or provoking sexual attraction of others. While this is not a common outcome after a brain injury, problems with impulsivity can always exaggerate any tendencies toward this behaviour. Flashing can be done for a momentary “thrill” to inflate the ego of the flasher, and often for sexual arousal as well. While it is ultimately a sexual fetish, some see it as an art form. Night clubs and goth bars encourage mild exhibitionism to enhance the venue’s atmosphere. “Streaking” is exhibitionism in front of large crowds, typically at sporting events. Other exhibitionists use the internet to distribute their stories and pictures on websites, sometimes using webcam feeds and other amateur methods. It is only considered a psychological disorder if the exhibitionism begins to interfere with the quality of everyday life. In some places publicly exposing yourself is a crime, and can land you in some serious trouble. Titles such as ‘indecent exposure’, or ‘public nuisance’ are usually what’s given to this act by the police. It is important therefore to understand that these tendencies can be accentuated following acquired brain injury, and this could cause alot of trouble for the person with the acquired brain injury. Although it may be difficult, changing behaviour is often necessary for the client’s wellbeing and to maintain service provision. Synapse Training or your local Behavioural Therapy provider could assist with this. ◗◗

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mantra” to challenge the negative beliefs I held. I would place my hands on my hips, toss my hair back, and with a twinkle in my eye, say to my partner “You sir, should be grovelling at my feet, worshipping me like the Goddess that I am!”. At first, this felt very uncomfortable but this little routine became an affirmation that slowly increased my self-esteem. SPREADING THE MAGIC With practice, the old negative self-talk based on fear was no longer so relevant in my life. The process had taken couple of years to evolve from feeling embarrassed while reciting my slogan, to embracing it. The affirmation had started to become integrated with my self esteem. J.B.Blount also concurs that our brain is our most powerful sex organ (www.libidoincreasing-food.com). He believes that people suffering from anxiety can benefit from mental rehearsal techniques similar to those athletes use for success in competition. He recommends visualisation techniques for overcoming anxiety, by picturing yourself feeling relaxed and sexually attractive. He suggests trying hypnotherapy for developing a strong mental image of confidence in sexual success. My Marilyn routine was effectively a mental rehearsal for success. A few months ago, I met a woman who had a brain injury from the complications of surgery and the effects of chemotherapy. She had undergone a hysterectomy, and told me how she felt she had lost her sexuality. She felt unattractive to her husband and found it difficult to feel sexy and make love. I related my own journey from believing I had lost my sexuality, to rediscovering it. She had tears in her eyes as I spoke. It was a powerful moment for both of us: for her, she could see there was hope; and for me, the revelation of being able to contribute something to others. This is not to say that all the doubts have been banished. At least, though, I have the tools to challenge the demons and invoke the goddess within. Enjoy the journey of discovering your own inner goddess. RECLAIM YOUR INNER GODDESS tips Stay fit and healthy. Exercise raises endorphins, and having a healthy body makes you feel positive about yourself. Eat healthy food like fruit, vegetables, low fat protein, and dark chocolate. Eating healthily not only keeps you healthy and looking good but eliminates feelings of guilt which erode self-esteem. Cut out cigarettes and alcohol. Not only are these bad for your health but the smell of them on your breath is not sexy. Of course, the occasional glass of wine with a nice meal shared with your partner can be enjoyable. Have regular medical and dental checkups. Not addressing health issues can add unnecessary anxiety which drains energy

and self-confidence. Bad teeth not only look unattractive they can also cause deeper health problems. Talk to your GP about anti-depressants or a referral to see a psychologist/neuropsychologst. See your gynaecologist about HRT or alternative herbal treatments. Make love often. Not only does it leave you feeling delicious, it stimulates hormonal activity and re-connects you with your partner. It can also make new neural pathways in other parts of the brain not affected by the brain injury, and creates new memories of enjoyment. Learn new ways of giving and receiving pleasure with your partner. Learn new strategies like CBT, Gestalt therapy, try hypnotherapy, listen to selfdevelopment CDs, and use visualisation techniques — whatever works for you. Get sufficient sleep. Tiredness causes a number of physical and mental health ailments which can impact on your sexuality. Learn relaxation techniques such as deepbreathing, yoga or have a massage. Give your partner a massage, or ask him to massage you. Set personal goals for the next three to six months, and plan how you are going to achieve them. Goals provide a sense of purpose, and completing them improves self confidence. Make time to keep in contact with friends or relatives who always affirm you and make you feel good about yourself. Ask them to list the things about you they like, love and admire. Read this list often. Listen to inspiring music or female vocalists singing about overcoming difficulties. Music helps to uplift your mood, and dancing to it is even better. FOOTNOTES 1 B.R. Kamisaruk, C. Beyer-Flores, & B. Whipple, The Science of Orgasm, 2006) 2 Anahad O’Connor, New York Times, 16-03-04 WEBSITES & BOOKS WORTH LOOKING AT • Mood Gym: www.moodgym.anu.edu.au • e-couch: http://ecouch.anu.edu.au • Beyond Blue: www.beyondblue.org.au • Food: www.libido-increasing-food.com • Tracy Cox, Superflirt, 2003 (any books by this author) • Allan Pease: Body Language, 1981 • A. & B. Pease: Why Men Don’t Listen & Women Can’t Read Maps (2001)


Pushing through denial Accepting that one’s brain is injured can be the hardest part of the recovery process . . .

F Funny side of sex “For the first time in history, sex is more dangerous than the cigarette afterward.” - Jay Leno “No matter how much cats fight, there always seem to be plenty of kittens.” - Abraham Lincoln “A really hard laugh is like sex–one of the ultimate diversions of existence.” - Jerry Seinfeld “A terrible thing happened to me last night again Nothing.” - Phyllis Diller “I’m a terrible lover. I’ve actually given a woman an anti-climax.” - Scott Roeben “Sex is not the answer. Sex is the question. Yes is the answer.” - Swami X “I love sex. It’s free and doesn’t require special shoes.” - Anon

One of the hardest things I have ever done is admit to myself that — first, I had a brain injury, and — second, that there were some things I would never be able to do the way I once did.– Compensatory strategies Over the years I had worked in several administrative positions where I was considered invaluable to some. One of the reasons I excelled in that area of my life was my excellent memory and organisational skills. Needless to say, considering my anoxic brain injury, that was over. I function extremely well now performing the administrative tasks required in the areas of the positions I pursued after my brain injury. I have the compensatory strategies I need to get the job done well — it’s just not the same as before, and it certainly does not come to me as easily as before. unaware of risky behaviour Prior to my brain injury, I had earned a black belt in Taekwondo and was nearing the time to test for my second degree. Even when I reached the point where I could consciously focus enough to participate again, doing so was downright dangerous and foolish since I would be expected to spar with an opponent. My lack of peripheral vision would definitely put me at an extreme disadvantage. Before the brain injury, I jumped in the car and drove my two boys all over the state and even to some tournaments and events outside the state; at times when Larry was working

away and couldn’t join us. I didn’t think twice about it. That was all over after my brain injury. Not only was each trip a traumatic experience, it was downright dangerous. With my lack of peripheral vision along with my state of mind, I was easily distracted and became uncontrollably hysterical the minute something didn’t go exactly as it should. It just went downhill from there, and the results were never good. There is not enough space here for me to list all of the areas of my pre-brain-injury life that were affected. I could go on and on. But, the good news is “I got my life back”. acceptance of the brain injury First, I had to accept the fact that I had suffered a brain injury. The first thing I wanted to do after that was find out as much about my brain injury as I could. They’re all different, you know. The next step was finding new ways of doing what I could no longer do the previous way. I got treatment with the insistence of my fabulous husband. I got support from my family – which is extremely important. If you have not done so already, push through the denial phase of your brain injury. No one can do that but you. That has to be the first step – and what a great time to recognise the truth than in the beginning of a new year. Choose to be optimistic in 2011. Make it a great year! Beth has been posting to her blog since 2008 after acquiring an anoxic brain injury. You can visit her inspiring blog at http://blog.brain-injury-online.com

“ An intellectual is a person who’s found one thing that’s more interesting than sex.” - Aldous Huxley “ Whoever called it necking was a poor judge of anatomy.” - Groucho Marx “There’s nothing inherently dirty about sex, but if you try real hard and use your imagination you can overcome that.” - Lewis Grizzard “Remember, if you smoke after sex you’re doing it too fast.” - Woody Allen “Sex is emotion in motion.” - Mae West “Sex and golf are the two things you can enjoy even if you’re not good at them.” - Kevin Costner “I like my sex the way I play basketball, one-on-one with as little dribbling as possible.” - Leslie Nielsen “Love is the answer, but while you are waiting for the answer, sex raises some pretty good questions.” - Woody Allen “If it wasn’t for pick-pockets and frisking at airports I’d have no sex life at all.” - Rodney Dangerfield “Why should we take advice on sex from the pope? If he knows anything about it, he shouldn’t!” - George Bernard Shaw “Sex is one of the most wholesome, beautiful and natural experiences that money can buy.” - Steve Martin “My wife is a sex object. Every time I ask for sex, she objects.” - Les Dawson “For women the best aphrodisiacs are words. The G-spot is in the ears. He who looks for it below there is wasting his time.” - Isabel Allende “Sexual intercourse is kicking death in the ass while singing.” - Charles Bukowski. ◗◗

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G Gonorrhoea Gonorrhoea is a Sexually Transmitted Infection (STI) spread through unsafe sexual contact – either vaginal, anal or oral sex. Ejaculation does not have to occur for transmission or acquisition of the infection. Both males and females can get it, and the only cure is to have the correct treatment. Symptoms don’t always show, but girls may notice cramps, a change in vaginal discharge, pain when going to the toilet, or vaginal pain/bleeding between periods or after sex. Guys may notice a yellow discharge from the penis, swollen/sore testicles and pain/burning when going to the toilet. Gonorrhoea is caused by a bacteria that grows and reproduces in the warm moist areas of the reproductive tract, and the urethra (urine canal) in both men and women. Testing for gonorrhoea is easy and requires just a urine sample or swab. It can be easily treated and cured with antibiotics. Remember that your partner/s will also need testing and treatment. Re-infection is common especially if your partner/s are not treated. Gonorrhoea left untreated can cause a range of complications. It can be the cause of Pelvic Inflammatory Disease in women, causing abdominal pain and fever, and Epididymitis in men, causing pain and possibly infertility. It can even lead to blood and joint complications. Symptoms can take as long as 30 days to appear following contact, and may appear very mild, so it is important to always get checked out. This is as simple as making an appointment with your GP, and talking to him/her about your situation. They will perform tests if they feel it is necessary, or they may diagnose something far more manageable than what you fear. ◗◗

Words of hope People with a brain injury and their family may come across negative attitudes or opinions surrounding the level of recovery that can be made following acquired brain injury. However it is important to not lose that hope. Hope is what helps people strive toward greater recovery and achievements. With the right support people with a brain injury can continue to improve many years beyond the common two year cut off and families can continue to strengthen. ◗◗

Intimacy & sexual activity Communication, difficult issues & adapting lives When a condition is first diagnosed, there are so many things to work through that sex is often low on the list of concerns. Eventually, the urge to return to intimacy and a sexual life is likely to be important for most people — of all ages. Then the questions begin. Is it possible? Is it safe? Am I being selfish even considering it? Will he or she still find me attractive? Can I be a good lover? Will my erection last? Can I have an orgasm? What if I lose bladder control during sex? How can I have a sex life when I’m always tired? Will my partner continue to love me? How do I get interested in sex when I’m dealing with everything else? Keeping channels of communication open and discovering appropriate avenues for sexual expression can have significant benefits to your overall feelings of happiness and wellbeing. If you are having problems, do ask your doctor or condition-specific support organisation for advice or more information. How ABI Affects Sexual Activity Many types of Acquired Brain Injury (ABI) and neurological conditions can affect a person’s sexual response directly. Some progressive conditions only affect sexual abilities as time goes on. Stroke A common worry for people after stroke is whether sexual activity will cause another stroke. The concern here is blood pressure. We all experience a sudden rise in blood pressure as excitement increases, but if it is already high this can cause problems. Check with your doctor. It also helps to make having sex more effortless, and your partner may need to take the more active part. A partner with high blood pressure is also likely to be on tablets to control it. These may affect the ability to have intercourse. If this is a problem, talk to your doctor. There are tablets that do not have this side-effect. Motor Neuron Disease (MND) MND does not generally prevent men from having erections or women from reaching orgasm, but a person with MND gradually becomes frail from muscle wasting and weak joints. The well partner may become fearful of

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causing pain or damage. Adapting the positions you use to accommodate physical difficulties may help. Parkinson’s disease The combination of physical and cognitive (behavioural and thinking) changes that affect people with Parkinson’s over time often affects their sexual response. Some men experience impotence, anti-Parkinson’s medications can have an impact, and disruptive symptoms such as tremor can be intrusive. Multiple Sclerosis (MS) MS can damage nerves that control sexual response. Men may have changes in sensation and experience difficulties with erections and orgasm. A number of medical procedures and medications can assist to gain an erection. All have advantages and disadvantages — discuss them with your doctor. Women may have less vaginal lubrication, less genital sensation and difficulty reaching orgasm. Vaginal lubricants, available from the chemist, can help with dryness. How Chronic Conditions Affect Sexual Activity Difficulties often arise as chronic neurological conditions progress, such as: • physical changes • cognitive changes • fatigue • incontinence • emotional responses • personality changes • self-esteem and self-image. Physical changes For example, symptoms such as paralysis, weakness, spasticity, poor balance, muscle wasting or pain may require couples to adjust their positioning or types of sexual activity. Cognitive changes Brain damage can affect cognitive (thinking) abilities that have an impact on a person’s sex life. For example, emotional instability (often part of ABI) and poor communication due to speech difficulties (common with Muscular Dystrophy) can be disruptive. People with Alzheimer’s speak of forgetting to have sex, or


H

“If circumstances hadn’t forced us to develop our sexual relationship, we might never have discovered the depth and variety of feelings and experiences that are now part of our entire life, not just our sex life.”

HIV HIV is the Human Immunodeficiency Virus, which can develop into AIDS (Acquired Immune Deficiency Syndrome). Over time (usually many years), HIV destroys a person’s immune system leaving the body less able to protect itself from disease. Without our immune system to HIV can be passed on through unsafe sex, or sharing needles and injecting equipment contaminated with blood. HIV used to be very common in people with haemophilia also. Haemophilia is a lack of clotting agent in your blood, resulting in uncontrollable bleeding from small bumps and knocks. Before we had the technology to isolate the clotting agent, people with Hemophilia were injected with donated blood which had the clotting agent as a component. This blood was rarely screened, and so people could end up with HIV by direct transfusion of blood that contained the HIV virus. Books like Bryce Courtenay’s April Fool’s Day explore the stigma attached to HIV, and the idea that anyone can get it, not just those who practice unsafe sex.

forgetting it has occurred. It may look to the unaffected partner as if the person is no longer interested. Yet a simple reminder may be all that is needed. Fatigue Fatigue can have a significant impact but if you know when it is most likely to occur, you can plan time together around it. Medications can also increase or decrease tiredness or change muscle function, which you may need to take into account as well. Incontinence The fear of bladder or bowel accidents makes some people uneasy but there are ways to minimise the likelihood: go to the toilet immediately before love-making, adopt positions that minimise the chance of reflexemptying of the bladder (particularly with Multiple Sclerosis) and having towels and a sense of humour on hand, just in case. Emotional responses Depression, anxiety and stress that occur, either as a result of changes in the brain or in reaction to brain injury, can also reduce sexual desire. If depression is an issue, treatment can make a huge difference. Talk to your doctor. Strategies for reducing stress can also help. Personality change When brain injury affects aspects of someone’s personality, it can feel like you are living with a stranger. Occasionally, demanding

or inappropriate sexual advances are an issue. A neuropsychologist can help with strategies that minimise difficult new behaviours. Self-esteem and self-image Sexual response is also tied up with our self-image and self-esteem. Both depend on our ability to accept ourselves and to not be influenced negatively by the perceptions of others, but both are challenged when someone becomes chronically ill. Self-image can take a battering when a person’s physical appearance changes. Self-esteem can falter if the person is less physically able to engage in sexual activities. If these are serious issues for you, consider seeing a sex counsellor or joining a support group. Your doctor or condition-specific group can help with referrals. The well partner Well partners often experience guilt, frustration, resentment, anger, exhaustion, depression or combinations of these states. It’s hard to switch from the role of carer to the role of lover. Some carer-partners play down their own concerns for fear of seeming selfish or complaining to a loved one whose ego may already be fragile. All these elements can generate anxiety and dampen interest and pleasure in sex. It is important for carers to identify their needs, so don’t be afraid or feel selfish when asking for help. If you’re not well, you can’t care for your partner either.

Australia has a relatively low rate of HIV infection, mainly due to proactive government campaigns, but figures are on the rise again because many Australians are becoming complacent. The two main ways to prevent HIV infection are to practise safe sex, and for illicit drug users to either use alternatives to injecting, or use harm reduction tips if they insist on injecting drugs. ◗◗

Common Myths about HIV ◗ You can get it from kissing False. HIV is in your saliva, but in minute quantities. This made non-infectious due to the enzymes present in saliva. ◗ Only people practicing anal sex can contract HIV Again, False. If your partner has HIV, then you can contract it by any sexual contact not involving a condom, or any blood to blood contact. ◗ People Die of AIDS/HIV False. People die indirectly from HIV/AIDS. It is often other infections like pneumonia that causes death. The individual’s immune system can’t fight the infection, and so it overcomes them. ◗◗

This article has been reproduced with the permission of BrainLink. It is an extract from their excellent brain injury resource available for free download at www.brainlink.org.au. This publication is split into sections covering medical issues, common changes after a brain injury, practical assistance and emotional issues. BrainLink is a Victorian service dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families. 12 / B R I D G E M A G A Z I N E


I Impotence Impotence, or erectile dysfunction (the inability to attain or maintain an erection during sexual performance), can be a source of much anxiety for males, and it can occur after a brain injury for many reasons (neuroanatomic, neurophysical, hormonal, and psychobehavioural causes). It can also be the side effect of some drugs you may be prescribed. To make matters worse, men usually have a lot of trouble admitting there’s a problem, let alone asking for help. One in ten guys will have trouble at some point in their lives, so don’t feel alone. The great news is that impotence is easily treated, whatever the cause. Apart from the well known medication Viagra, there are also nasal sprays and other treatments available. Don’t forget that medication may be involved also, and impotence may be solved simply by talking to your doctor about trying a different medication. ◗◗

Discussing sex

Many couples feel embarrassed talking about sex – telling each other what they like and what they don’t like. It’s important to try to get past this. How can you help your partner to enjoy sex if you don’t know what gives them pleasure? Timing Find out from your partner when he or she would be most comfortable talking. Right after an unsatisfying encounter may not be the best time for some, but right for others.

Confidence and Self esteem can be problematic following ABI, and can often be a leading factor in impotence. Sometimes simply talking about the situation can assist you both to become more intimate again. Be prepared to listen to the other person If someone is tired or in a particularly upset mood, it is better if they calmly tell the other person that they are unable to engage, rather than trying to do so when unable to concentrate. The other person may appreciate the suggestion of another time that will be more suitable. Listen and clarify Give your full attention when listening and ask for more information when needed, e.g. ‘I don’t follow, can you explain more clearly?’. Acknowledge the other person and listen effectively This is an important part of letting the other person know they have been heard and understood. The best way to do this is by acknowledging their ideas and feelings, e.g. nodding or saying ‘I realise that you must be really frustrated about this too’, or, ‘I can see where you are coming from’. If you use these tools, and speak openly about your problems, self esteem can increase and hopefully your intimate relationship will concurrently. ◗◗

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Approach Think through what you want to say and use “I” language. Don’t accuse or criticise. For example: “I’d like to spend more time kissing and cuddling before we have sex” is more helpful than, “You seem to be in a hurry without thinking about my enjoyment”. Topics to try Different people will want to talk about different things – how often you have some type of sexual activity, what activities you can both manage and enjoy, the use of fantasy or a need for more emotional intimacy. Try to talk together about any problems you have and share your feelings and needs with each other. Depending on your situation, you may need to discuss changing what you have done together in the past - perhaps less focus on intercourse and orgasm and more on intimacy. Touching, tenderness and gentleness, the reassurance that you are loved and needed are equally important. Speech problems When a person’s speech is affected, showing affection physically will be even more important for both of you. Similarly, you may need to show, rather than tell, each other what you find pleasurable.

Discussion don’ts Try not to talk when you are angry, have had too much to drink or have too little time or privacy – it only makes matters worse. Strategies to Improve Intimacy & Sex Life There are no magic answers to improving your intimacy levels and sex life, but certain strategies may help. It’s important that couples do not lose their sense of physical intimacy - it can be such a wonderful way of comforting each other and expressing feelings. Role awareness Be aware of the role each of you plays in your relationship and how your partner’s condition may change this. Be flexible and ready to shift roles. For example, which of you usually initiates sex? Would it help to change this? Respect boundaries We must all balance the need for closeness with the need for independence and privacy. A disability can disrupt this by throwing you together more than usual. Make sure you get time alone. Broadening horizons There are many ways of achieving intimacy, warmth and sexual satisfaction without intercourse or orgasm. Touching, kissing, stroking and cuddling provide the physical contact we all need and can be immensely reassuring and satisfying. Mutual masturbation This simply means stimulating each other to orgasm. Some couples have never done anything like this before and find the idea difficult to accept. But people of all ages find sexual satisfaction together through this method. It is never too late to learn.


My back is hurting already!

... and I found 28 positions we haven’t tried yet

J Jealousy Jealousy is a secondary emotion and typically refers to the negative thoughts and feelings of insecurity, fear, and anxiety over an anticipated loss of something that the person values, particularly in reference to a human connection.

For most women, rubbing or kissing the clitoris – where the folds of flesh come to a point above the opening to the vagina – is the easiest way to help them reach orgasm. Some may prefer vaginal stimulation. A holistic approach is generally best, which might include the above, music, body kissing and massage. Every woman is different. A man’s partner can bring him to orgasm/ ejaculation by stimulating his penis. Even without a chronic illness, older men need more direct penis stimulation than younger men to become erect. Try using lubricant or saliva to make this easier. Express sensuality Looking good helps. Wear clothes that you both find attractive. Consider sensual triggers such as perfume, aromatherapy or massage oils. Try setting the scene with music and candles. Talk about and enjoy the sexual experiences you can have. Try not to concentrate on what you can no longer do. Sex isn’t everything Make sure you have enough time simply to enjoy each other’s company. Counselling If talking together about sexual issues is

RESOURCE

KIT

FOR CARERS

of people w it h

N eur ol og i c a l Con d i t i on s or Acquired Brain Injury

For those who care:

A Practical Guide for families of people with Neurological Conditions or A c q u i r e d B r a i n I n j u r y

Reducing the incidents and impact of brain disorders in our community

too difficult or it is not solving the situation, consider seeking outside help, either together or separately. For some people, talking about their sexual relationship with a stranger can be difficult. Often however, a few sessions with a capable therapist can help you to see problems in new ways and to find workable solutions. Seeking the advice of a counsellor or therapist does not mean you are “sick” or that you need prolonged treatment. If you feel uncertain about professional help, remember that you are doing the hiring and firing – you can stop the therapy any time you wish. Caring for Family Members If the person you care for is a family member or friend, be aware that they may have sexual needs that are not being met. This can apply particularly to older people, such as parents. It can be very difficult for this person to express their sexual needs to a family member. Find someone they trust who can broach this subject with them. Contacts To find a suitable therapist or counsellor, ask your own doctor or contact your conditionspecific support organisation.

This article has been reproduced with the permission of BrainLink. It is an extract from their excellent brain injury resource available for free download at www.brainlink.org.au This publication is split into sections covering medical issues, common changes after a brain injury, practical assistance and emotional issues. The chapters cover areas as diverse as managing medications, eating and swallowing problems, adapting your home and managing stress. The website also has a wide range of fact sheets on many other issues. BrainLink is a Victorian service dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families.

Jealousy is a familiar experience in human relationships. It has been observed in infants five months and older. Romantic jealousy has been defined as a “complex of thoughts, feelings, and actions which follow threats to self-esteem and/or threats to the existence or quality of the relationship, when those threats are generated by the perception of a real or potential attraction between one’s partner and a perhaps imaginary rival.” (White, 1981) Sometimes jealousy can arise as a serious issue after a brain injury. For example, a husband may become extremely jealous of perceived interest by other men in his wife, and may restrict, or even seek to prevent, her leaving the house. The frontal lobe is often damaged in brain injury, which can affect our reasoning, problem-solving and control over our basic instincts such as anger and feelings of jealousy. Do not allow a pattern of aggression to become established in your home. You will need to make some allowances for changes brought on by a brain injury, but continued abuse and violence is not acceptable. When the person still retains self-awareness, they will need to relearn communications skills, anger management, relaxation techniques to manage their anger and tendency to violence. Your Brain Injury Association should be able to provide or refer you to suitable support in this area. Unfortunately a lack of self-awareness may mean these skills cannot be regained, so a behaviour management program is needed to minimise or prevent outbursts. Tips on how to develop a program are available at www.synapse.com.au in another fact sheet called Challenging Behaviours. Join a support group in your area so that you can find out how others have handled this problem. Do not allow yourself to live in a situation of terror. If problems persist, you may need to consider professional support with a program geared at behavioural management. Your local Brain Injury Association should be able to refer you to specialists in this area. ◗◗

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K Kissing

Disinhibited & inappropriate sexual behaviours

We often assume intimacy must mean sexual intercourse, but we should remember some of our most intimate moments are simply a kiss (guys please pay special attention!). Depending on the culture and context, a kiss can express sentiments of love, passion, affection, respect, greeting, friendship, and good luck. It can also be a ritual, formal or symbolic gesture indicating devotion, respect or greeting. The act of kissing on another person’s lips has become a common expression of affection among many cultures worldwide, but in certain cultures it was introduced only through European settlement (e.g. Japan, certain indigenous peoples of Australia, the Tahitians, and many tribes in Africa). In modern times, scientists have done brain scans on people when a romantic relationship progresses. Some studies found that after that “first magical meeting or perfect first date,” a complex system in the brain is activated that is essentially “the same thing that happens when a person takes cocaine.” Within the natural world of animals there are numerous analogies, notes Crawley, among birds, some insects, dogs, cats and bears. Kissing is a complex behaviour that requires significant muscular coordination involving a total of 34 facial muscles and 112 postural muscles, Affection in general has stress-reducing effects. Kissing in particular has been studied in a controlled experiment which found that increasing the frequency of kissing in marital and cohabiting relationships results in a reduction of perceived stress, an increase in relationship satisfaction, and a lowering of cholesterol levels. Kissing can also cause the adrenal glands to release epinephrine and norepinephrine (adrenaline and noradrenaline) into the blood, thereby causing an adrenaline rush, which has a beneficial impact on the cardiovascular system because the heart pumps faster. In an experiment by Dr. Alexander DeWees, a passionate kiss generally burns up to 2–3 calories per minute. ◗◗ Adapted from http://en.wikipedia.org/wiki/Kissing under the GNU Free Licence Agreement

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These behaviours can be very distressing for partners and family. Disinhibited sexual behaviour can include: • sexual conversation or content • comments and jokes of a personal or sexual nature • inappropriate touching or grabbing • sexual propositions • exposure of genitals in public • masturbation in a public place • sexual assault. Disinhibited sexual behaviour can be defined as a person not following social rules about when and where to say or do something. This means that sexual thoughts, impulses or needs are expressed in a direct or disinhibited way, for example: • in inappropriate situations, • at the wrong time • with the wrong person. Why does it Happen? Most people with brain injury do not have increased sexual libido after an injury. In fact decreased sexual libido is more common. There

are a number of other reasons for disinhibited sexual behaviour. These can include: • Decreased awareness and insight, and poor self-monitoring of a person’s own behaviour (e.g. not realising conversation or behaviour is offensive to someone else) • Impulsivity and disinhibition, resulting in behaviour that is not controlled by the usual social or interpersonal rules • Thoughts, which are usually private, may be spoken out aloud • Acting too hastily or on an impulse • Not thinking about the consequences of behaviour (e.g. impact on relationships). Changes in communication skills can result in: • inappropriate choices of jokes, comments, questions, or conversations • misunderstanding social relationships — believing a relationship is closer than it is • not picking up verbal and non-verbal cues and feedback from others (e.g. not picking up disapproval, dislike or fear)


• awkward expression or inappropriate use of language • difficulties with social communication skills such as eye contact, social distance, space, and appropriate touching, may also cause social behaviour that makes others feel uncomfortable or threatened. Inability to express sexual needs may mean that: • opportunity to maintain or form relationships is reduced • relationships are still just as important to the persons’ identity and self-esteem. • impaired cognitive, communication, and behavioural skills can reduce ability to make and keep new social and sexual relationships. Limited social opportunities and isolation can result in lack of understanding of appropriate behaviour. Things to try Talk about behaviour Talk to the person about their behaviour and what you expect. Let them know if behaviour is not appropriate — if they don’t know, they can’t change it. Let them know how the behaviour makes you feel e.g. “I feel uncomfortable when…” Let other people know what strategies to use so there is a consistent response. Provide feedback about the behaviour Provide the person with frequent, direct and clear feedback. Feedback should: • be immediate and early • be direct • be concrete and describe the behaviour • give direction • be consistent • not reinforce or encourage the behaviour • help the person to learn • not be demeaning or humiliating • not impose your own values Manage the environment Some individuals have limited insight and awareness about sexually disinhibited behaviour, and/or very limited capacity to change behaviour due to severe cognitive and behaviour impairments. In this case you may need to find strategies to manage the environment. For example: • Try to predict situations where the behaviour is more likely • Work out strategies ahead of time • Restrict any opportunity to engage in inappropriate behaviour (planning, proximity, opportunity and means) • Limit any “at risk” social activities e.g. crowded clubs or pubs or where alcohol is being consumed • Provide cues about behaviour — what the person should and should not do — before, during, and after social activities • Provide alternative activities (e.g. small groups versus large groups)

• Keep a comfortable distance so the person cannot touch, grab or get too close (e.g. when providing personal care). provide supervision & structure • Provide one-to-one support and supervision in any “at risk” situations • Provide cues and prompts about appropriate or inappropriate behaviour • Redirect, distract or divert the person (e.g. more appropriate topics of conversation, or change the activity or task). Plan Ahead If a person has a history of severe disinhibited sexual behaviour (exposure, masturbation in public, or sexual assault), it is essential that you plan ahead regarding personal safety. Consider: • having two people provide care • limiting home visits • supervising children • limiting access. In the person’s home • always visit with another person • make sure someone knows you are there when you visit • take a mobile phone with you, and carry it at all times • have your car keys in your pocket • get familiar with the home, so you know where the doors are located • keep a comfortable distance. For example, sit across a table, sit close to the door or exit. Addressing sexuality needs A person may need others to give them space and privacy to express their sexual needs (e.g. privacy to masturbate, watch videos or to have a sexual relationship). Useful tips are: Remember that sexuality is a normal part of life and just because the person has a disability because of their brain injury, does not mean they don’t have normal sexual needs. Encourage the person to access information and advice regarding sexual activity and choices (contraception, STD’s, safe sex practices). Information may be available from: • Family planning • General Practitioner • Rehabilitation services. Extra Resources • See other ABIOS fact sheets at www.health.qld.gov.au/abios/ • “You and Me” by Grahame Simpson, Brain injury Rehabilitation Unit, South Western Sydney Area Health Service, 1999 • Talk to a Psychologist, Psychiatrist, Social Worker, or other professional. This article is reprinted with permission from the ABIOS fact sheets available at www.health.qld.gov.au/abios/ The Acquired Brain Injury Outreach Service is a rehabilitation service assisting people with Acquired Brain Injury in Queensland, their families, and carers. Ring ABIOS on 07 3406 2311 or email abios@health.qld.gov.au

L Lubrication In normal circumstances, for most women, the vagina produces its own lubricant for sexual intercourse. However, this may be disrupted after acquiring a brain injury and lead to painful intercourse. Possible reasons for this include actual changes in the brain, a decreased interest in sex, or battling constant fatigue. It is important to talk about changes like this with your rehabilitation team or GP. Water-based personal lubricants are water-soluble and easily bought in chemists and supermarkets. Newer water-based lubricants are formulated with natural skin moisturisers such as carrageenan, eliminating the sticky residue post-evaporation. Anything that’s not water-based (like petroleum jelly) can weaken a condom. Some sex toys can only be used with waterbased lubricants too. Dryness can also be a side-effect of medication. The primary goal of medication therapy is to achieve beneficial effects with minimal unwanted effects. This goal cannot be achieved if side-effects cause distress and/or interfere with functioning. There are various methods for dealing with unwanted drug effects, and in most cases they can be corrected with proper attention. First, it is important that patients taking medication have an understanding of what side-effects to expect, and which ones might indicate a serious problem. Since tolerance does develop to many side-effects, the problem may resolve with continued treatment. The physician may also be able to make a change in the dose or dosing schedule to minimise unwanted effects in certain cases. Sometimes a switch to another medication may be necessary. Patients must be willing to report any unusual or concerning events to their treatment provider in order for them to be addressed. Medication should never be abruptly discontinued without the physician’s knowledge, as potentially serious withdrawal symptoms may result. ◗◗

Free resources

Apart from this Bridge magazine, Synapse offers a wide range of resources. Visit the publications section of our website at www.synapse.org.au to discover: • Free fact sheets • Free online back issues of previous magazines • Hard copies of various publications to order • Free posters for awareness-raising. ◗◗

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M Masturbation While masturbation can be an embarrassing topic for some people, it can become an important issue after a brain injury. For example, in the personal story on page five a woman no longer wanted to have a sexual relationship with her husband due to personality changes after his brain injury, and taught him to use masturbation instead of pursuing her for sex. Some adolescents with impulsivity issues may masturbate in inappropriate settings and will need to be shown when and where are suitable times and places. Historically, masturbation has often been celebrated and encouraged in many cultures. European views from around the 1700s, especially when the notable Swiss physician, Samuel-Auguste Tissot, published a medical treatise on the purported ill-effects of masturbation. He claimed that frequent masturbation resulted in “a perceptible reduction of strength, of memory and even of reason; blurred vision, all the nervous disorders, all types of gout and rheumatism, weakening of the organs of generation, blood in the urine, disturbance of the appetite, headaches and a great number of other disorders.”

These unfounded beliefs reached their height in the Victorian era. Today, masturbation is widely seen as a healthy activity although the Roman Catholic church still forbids it. ◗◗ A patented device designed to prevent masturbation by inflicting electric shocks upon the perpetrator, by ringing an alarm bell, and through spikes at the inner edge of the tube into which the penis is inserted. Adapted from http://en.wikipedia.org under the GNU Free Licence Agreement

Hearing difficulties Communication issues can be worsened by hearing problems caused by the brain injury Our hearing process has two stages: the mechanical and a neurological process. The mechanical process is carried out by the ear which has three sections, the outer, middle, and inner ears. The outer ear, consisting of the lobe and ear canal, protects the more fragile parts inside. The middle ear begins with the eardrum, a thin membrane which vibrates in sympathy with any entering sound. The motion of the eardrum is transferred across the middle ear via three small bones to the inner ear where a tube called the cochlea is wound tightly like a snail shell. From here the neurological process begins and the brain translates vibration into electrical impulses. Trauma most commonly affects the mechanical process. An eardrum may rupture, any of the small bones could break or there could be bleeding or bruising of the middle ear. Sometimes damage to the parietal or temporal lobes can disrupt the neurological process. Thankfully many hearing difficulties are not permanent and can be reduced or eliminated with treatment. Tinnitus Tinnitus is experienced as noises which are commonly like a buzzing, hissing or ringing in the ears. It is usually caused by damage to the mechanical process. Accurate diagnosis and treatment is needed so a trip to the doctor and possible referral to an audiologist is required. Tinnitus can be exacerbated by exposure to loud noises, excessive stress, caffeine, alcohol, nicotine, some illicit drugs and medications, and quinine found in tonic water. Some audiologists run clinics to help manage tinnitus. Other treatments include hearing aids, tinnitus retraining therapy or cognitive behavioural therapy to alleviate distress. Meniere’s syndrome This syndrome is caused by excessive pressure in the chambers of the inner ear. Nerve filled membranes stretch which can cause hearing loss, ringing, vertigo, imbalance and a pressure sensation in the ear. Although it can not be cured, treatment can alleviate the

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symptoms with medication such as diuretics or steroids, electrical stimulation or simply limiting movement. There are various surgical procedures that may decrease the pressure or remove or deaden the nerves involved. Auditory agnosia This is impaired recognition of nonverbal sounds but intact language function. This rare outcome is normally from damage to the temporal-parietal region of the brain which interferes with the cognitive process of hearing. There may be an inability to understand spoken language while the ability to speak is preserved. Auditory agnosia often gradually resolves itself over time. Sensitivity or Hyperacusis Sometimes trauma to the inner ear can cause certain noises or pitches to become extremely loud or soft. Our typical western lifestyle, with its barrage of noise, can be a living hell for some people with a brain injury whose sensitivity to sound has been affected. A few examples of difficult situations include dining out, taking a walk, washing the dishes, using a vacuum cleaner or listening to music. Compounding the problem is that the disorder is often not diagnosed, and the person has trouble convincing others that the problem exists. Sufferers of hyperacusis may resort to a reclusive lifestyle to cope. The problem is normally a collapsed tolerance to normal environmental sounds. The person will often test as normal on an audiology test, but their ears have lost the ability to deal with quick shifts in sound loudness. Ear-plugs and ear-muffs can be a great help. Activities can be restructured so that dining out or shopping can be done outside the peak hours, to avoid excessive noise. A commonsense approach to diet also helps. Avoiding stimulants such as nicotine or caffeine reduces the body’s sensitivity to noise. A proper diet and exercise play their part in better overall health, which will impact indirectly on hyperacusis by reducing stress. Hearing clinics can provide therapy with a


N Non-penetration Non-penetrative sex (also known as outercourse, petting, heavy petting, dry sex, and dry humping) is sexual activity without vaginal, anal, or oral penetration, as opposed to penetrative aspects of intercourse, anal sex, or oral sex. The terms mutual masturbation and frottage are also used, but with slightly different emphases. NPS and outercourse are rather new terms, which is why such practices are sometimes still called “intercourse.” The importance of this kind of sexual activity is that a brain injury may mean that sexual intercourse is not possible for reasons such as medication, paralysis, and inability to achieve an erection. ◗◗ Adapted from http://en.wikipedia.org under the GNU Free Licence Agreement

practical tips to minimise hearing problems specially programmed hearing aid to manage the hyperacusis. They may also provide a soft noise generator (that is worn while the person is awake) for up to 18 months. Long-term exposure to gentle sound at a barely audible level can desensitise the ears and improve both hyperacusis and tinnitus. This ‘white noise’ contains every frequency audible to humans, and can be likened to the sound of distant surf or wind, and can help up to 90% of sufferers. As with many effects of brain injury, hyperacusis is exacerbated by stress and fatigue. Good sleep and avoiding stressful situations will maximise the ability to deal with noise. The most effective solutions involve increasing the tolerance of noise, so the person with a brain injury needs to walk the fine line between protecting their ears by minimising discomfort, yet exposing themselves to sufficient noise to build up their ‘immunity’. Over-protection will only further increase the effect of hyperacusis. treatment If you are experiencing auditory problems, see your doctor, as there may be a treatable medical cause. A referral may be needed to have your hearing checked by an audiologist (hearing scientist) or you may be referred to an ear/nose/throat specialist. Some audiologists run specialist clinics to help manage some conditions and they fit hearing aids and/or therapeutic noise generators if needed. Good quality and properly fitted hearing aids reduce and even eliminate most tinnitus associated with hearing loss. They take away the strain of listening and distract from the tinnitus

• Avoid noisy environments where possible • Tell others about your hearing difficulties • Use gentle music to cover the constant noise caused by tinnitus • Try to sleep well and avoid stressful situations • Cut down on salt if your problem involves fluid pressure in the ear • Stop using drugs such as coffee, cigarettes and alcohol. by increasing sounds in the outside world. Therapeutic noise generators are a hearing aid type device for people with no hearing loss that produces a blend of external sounds. This stimulates most fibres of the hearing nerve to deviate attention away from the tinnitus. Tinnitus retraining therapy aims to reduce and ultimately eliminate tinnitus perception. It combines auditory therapy (hearing aids/noise generator) and counselling aimed to change negative beliefs, distract from tinnitus and reduce stress. Cognitive behavioural therapy aims to alleviate distress and producing adaptation to some conditions. Your GP should be able to refer you to the necessary specialist, so don’t hesitate to ask if you have any problems. This article is reprinted from our 72-page publication ABI: The Facts. This free book covers a wide range of issues arising from a brain injury, from the hospital phase through to long-term rehabilitation concerns. Visit synapse.org.au to order your free copy.

Erin Brockovich visits Synapse Synapse was recently honoured to host a Q&A session with the famous Erin Brockovich, courtesy of Shine Lawyers who represent many clients with brain and spinal cord injuries. Erin’s work as a legal researcher was made famous in the film bearing her name. Julia Roberts acted the part of Erin in bringing about one of the largest class action cases against a major US company. Around one hundred guests attended the Synapse function, where Erin explained that her life may also be impacted by Acquired Brain Injury (ABI). She gave an overview of her current projects. Erin inspired everyone and said that “people living with a disability bring something special to our communities”. She also said that people with disabilities provide a unique perspective, they add to our diversity, and that everyone has the right to be heard. To mark the occasion Erin kindly donated four autographed photos of herself to be auctioned for charity, proceeds going to assist people living with ABI. Synapse will be placing them on eBay in the months leading-up to and including Brain Injury Awareness Week (15th to 21st of August). Synapse would like to thank Shine lawyers for bringing us the special opportunity of meeting Erin Brockovich in person. We wish Shine Lawyers and Erin all the best in their endeavours. ◗◗

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O Orgasm

Hormonal imbalances after a brain injury Orgasm is characterised by intense physical pleasure and quick cycles of muscle contraction in the lower pelvic muscles around the primary sexual organs and anus. Orgasms are often associated with other involuntary actions, including vocalizations and muscular spasms in other areas of the body. Male and female brains act almost the same during orgasm. Brain scans show that large parts of the cerebral cortex temporarily reduce their activity, which may explain why it is called ‘the little death’ in France, and ‘death amidst the act’ in Spain. Around 13% of women experience multiple orgasms, and some men have reported having multiple consecutive orgasms, particularly without ejaculation. Orgasm doesn’t always require stimulation of the penis or clitoris. Apart from the obvious “wet dreams”, some people with spinal cord injuries have been able to reach orgasm by mental stimulation alone. A small number of people can reach orgasm by very indirect stimulation, such as riding a bicycle, exercising, or even yawning. Others report reaching orgasm by stimulation of the prostate gland (e.g. anal sex for men, or the ‘g-spot for women). Some women claim to have reached orgasm by having their breasts stimulated. Female ejaculation occurs for a small percentage of women – it is theorised that the liquid comes from the Skenes glands (the female equivalent of the prostrate) and exits via the urethra. Sigmund Freud theorised that clitoral orgasms were a sign of sexual immaturity and that adult women should have vaginal orgasms, a claim that, like much of his work, has been disproved over time. ◗◗

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Brain injury may cause damage to the hypothalamus and/or pituitary gland, which are small structures at the base of the brain responsible for regulating the body’s hormones. Damage to these areas can lead to insufficient or increased release of one or more hormones, which can cause disruption of the body’s ability to maintain a stable internal environment (homeostasis). If damage to the pituitary gland leads to a reduction in hormone production the resulting condition is known as hypopituitarism. Symptoms & assessment In the early stages after brain injury most people’s hormone levels are severely affected, making diagnosis of hypopituitarism difficult. Later in the recovery process it may become clear that some symptoms are caused by hormonal changes, and some rehabilitation units test for this on assessment. However, there are currently no clear guidelines in place for the assessment and treatment of pituitary function after brain injury, and more research is needed to determine the scale of the problem. The effects of pituitary and hypothalamus injury are many and varied because of the large variety of hormones which can be affected. Some symptoms are similar to the more common effects of brain injury, and that is another reason why the problem may be under-diagnosed. Examples of overlapping symptoms are: • Depression • Sexual difficulties, such as impotence and altered sex drive • Mood swings • Fatigue • Headaches • Vision disturbance Other symptoms include: • Muscle weakness

• Reduced body hair • Irregular periods / loss of normal menstrual function • Reduced fertility • Weight gain • Increased sensitivity to cold • Constipation • Dry skin • Pale appearance • Low blood pressure / dizziness • Diabetes insipidus. Each symptom is caused by a change in the level of a particular hormone that is produced by the pituitary gland. There are many possible causes of the above symptoms, particularly after brain injury, so a thorough assessment is required before any diagnosis can be made. If you suspect you or a relative may be experiencing the symptoms of hypopituitarism, or any other hormonal condition, you should speak to your GP. If they feel it is appropriate, they will be able to refer you for further assessment with a specialist in the field, such as an endocrinologist. An endocrinologist will be able to run a variety of hormone level tests and may refer you for a brain scan to look for signs of damage to the hypothalamus or pituitary gland. It is important to remember that symptoms may not become apparent immediately. In some cases the problems don’t manifest themselves until weeks, months or even years after the injury. Don’t dismiss the possibility that the problems are a result of the head injury just because it happened a long time ago. Treatment In the early stages, hormonal problems can cause a condition called neurogenic diabetes insipidus, which is characterised by increased thirst and excessive production of dilute urine.


P Pap smear The Papanicolaou test is a screening test used in gynecology to detect premalignant and malignant (cancerous) processes in the ectocervix. Significant changes can be treated, thus preventing cervical cancer. In taking a Pap smear, a sample of cells from the outer opening of the cervix of the uterus and the endocervix are gathered then examined under a microscope for abnormalities. The test aims to detect potentially pre-cancerous changes (called cervical intraepithelial neoplasia (CIN) or cervical dysplasia), which are usually caused by sexually transmitted human papillomaviruses (HPVs). The test remains an effective, widely used method for early detection of pre-cancer and cervical cancer. The test may also detect infections and abnormalities in the endocervix and endometrium. Public health officials in Australia, Canada, Europe, and the United States recommend vaccination of young women against HPV to prevent cervical cancer, and to reduce the number of painful and costly treatments for cervical intraepithelial neoplasia, which is caused by HPV. It is important to get these done regularly. No one likes having them done; they’re uncomfortable, and having anyone other than your partner down there can feel very strange! But given the seriousness of cervical cancer it is a good idea to have regular checks – HPV can develop into cervical cancer in as quick as three years. The earlier that changes in the cells are detected, the easier they are to treat.

This is due to a reduction in secretion of a hormone called vasopressin (anti-diuretic hormone) and can be treated by administering desmopressin (manufactured anti-diuretic hormone) and replacing lost fluids. In most cases, diabetes insipidus disappears fairly quickly, but in some rare instances can persist, sometimes permanently, requiring lifelong hormone replacement therapy. In the later stages, where hypopituitarism is confirmed, treatment may be given. Hormone replacement therapy may be used to restore hormones to normal levels, which should help to manage the symptoms. There are different treatments available, depending on the particular hormones involved and the nature and extent of the symptoms. The assessment and treatment of hypopituitarism after brain injury is a complex process and more research is needed into the potential long-term benefits of hormone replacement therapy. As with any treatment, you should discuss the pros and cons with your doctor before making any decisions.

Further information There are a number of studies into hypopituitarism after brain injury, but as yet the full extent of the problem is unknown. It seems to occur mainly after severe brain injury, however some studies have shown that the pituitary gland may also be vulnerable in seemingly minor head injuries. You should be particularly aware that many of the symptoms can be caused by damage elsewhere in the brain, and if this is the case treatment for pituitary dysfunction will not be effective. This article is reproduced from www.headway.org.uk with the permission of Headway - the brain injury association. You can send an email to helpline@headway.org.uk to discuss any issues raised. Headway - the brain injury association is a charity in the United Kingdom offering support to people affected by brain injury through rehabilitation programmes, carer support, training, social re-integration, information, advocacy, community outreach and respite care. Visit the website for great resources available for free download.

The test itself should be relatively easy and painless. Some women can experience pain, however this is usually a sign of untreated vaginal problems, or that the speculum is the wrong size – tell your doctor if there is any pain. The doctor will begin by inserting a speculum into the vagina which will allow the doctor to spread the vagina open and allow access to the cervix. Samples are then collected from the outside and inside openings of the cervix (using a small spatula or brush) to be sent away and tested for abnormalities. The process should take about two minutes, just sing a couple of choruses of Under the Bridge by The Red Hot Chilli Peppers and you’ll be out in no time! Truths Revealed: ◗ A pap smear does not test for HIV (a blood test is required). ◗ A pap smear test cannot bring on a period. ◗ You need a pap smear regardless of your sexual activeness. ◗ You need a pap smear regardless of your sexuality (homosexuals and heterosexuals alike). ◗◗ Adapted from http://en.wikipedia.org under the GNU Free Licence Agreement

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Q Queer While the word “queer” was once used as a derogatory word for homosexuals, the homosexual community has taken this (and other words) to heart, a typical symbol of the humour and resilience within this community. Homosexuality was defined by the medical establishment as a mental illness until 1973. In many cultures, homosexual people are still frequently subjected to prejudice and discrimination. Negative stereotypes characterise homosexual people as less romantically stable, more promiscuous and more likely to abuse children, but there is no scientific basis to such assertions. Gay men and lesbians form stable, committed relationships that are equivalent to heterosexual relationships in essential respects. Countries vary widely in how they legally treat homosexuality — everything from legal recognition of same-sex marriage or other types of partnerships, to the death penalty as punishment for same-sex sexual activity or identity.

Never be ashamed. Homosexuality is not something that people choose, and so it’s not something you can readily change about yourself. There is still debate, however, about whether homosexuality is biologically or environmentally based. The causes have been described as multifactorial, even in recent articles, indicating that it is proabably a mix of the two, as biological factors don’t account for all cases; however, neither do environmental factors. Research on the topic is by no means exhausted, suggesting that there are many more studies to be done before a definitive answer is found. If you think that you may be homosexual, and would like to talk to someone about your options, don’t hesitate to do so. Sometimes speaking to others is the best way to find out what you want to do about something. You can often speak with your GP about places in your community that you can find support, or call Twenty Ten on 1800 65 2010. ◗◗

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Hi ho, it’s off to work I go Being over-optimistic about working again is common after a brain injury. Trevor Short shares his experiences . . .

Thankfully the specialists tailored my re-entry into work appropriately — four hours a day, three days a week, with 10 minute breaks every hour. I had forgotten how exhausting any relearning experience was during rehab, and thought I could go straight back to 10 hour days. fatigue I needed the utmost willpower to drive the half hour home after four hours of work, followed by sleeping the rest of the day due to total exhaustion. This fatigue is one of the effects that does not appear to heal with time. They started me back on the job with apprentice-type work such as punching holes with a machine which was scary at the best of times. I may as well have been a new apprentice on the job as I did not know what I was looking at. By this time I was getting very cunning when it came to hiding the effects of my injury, so I explained to one of the guys that I had to do everything correctly and ‘by the book’ before operating any machinery. I asked him to act as if I had never used this machine before, and give me a five minute explanation and demonstration of its use. This worked better than I’d hoped, and was immediately adopted as

my means of relearning the years of experience and knowledge that I had lost in an instant. An interesting aspect of this process is that most people when approached in this manner were more than happy to comply to the extent that I am sure that I have learned more about some equipment than I knew before. Somehow I survived the first week and moved to the next phase — four hours a day five days a week — which resulted in the same fatigue levels. By the fifth week I was back to normal hours without the hourly breaks, and trying to manage problems as they emerged. Eventually I could cope again with up to 60 hours a week, as long as I could focus on one thing at a time; I still have problems if I’m expected to do several things at once. A major reason for coping with fatigue is starting so early that I can get home for an afternoon nap at 2.30pm. dyslexia Some of the problems encountered were related to a newly- discovered dyslexia, which I am sure did not previously affect me. It really was a shock to write something and discover that some of the letters were in the wrong places. Having to read things very carefully one word at a time to avoid misunderstanding is


R Rape Sex can only be between people who agree to have sex. Anything else is going to be sexual assault, and severe criminal charges apply. We can’t stress this enough! Anyone can change their minds — even well into the act of sex — whether they are long-term partners or it’s just a one-night stand. Everyone, particularly males, must be alert to any verbal or non-verbal language that suggests a partner no longer feels comfortable with having sex. This is especially important for males who have acquired a brain injury, as any problems with social skills or impulsivity can make it harder to realise when sex is no longer consensual. ◗◗

State-wide assessment

Synapse operates a state-wide Assessment & Planning Service. The service is independent and fee-for-service. something else that I was preparing to come to terms with. There was also the inability to rotate images within my mind, which I had thought was the product of a female mind simply because I had noticed that most women I knew would turn a road map to the direction of travel to see which way to turn. I was now doing this, so maybe I was getting in touch with my feminine side! double checking A common issue with metalwork is being 10mm out. Before, this was a mistake made by other people, not me. I now had to re-measure and double check all work, and sometimes it was still wrong. The inquisitive part of my brain was still there insisting that it had to find the reason why this was now happening. I would talk to myself in the third person, “now he is measuring this part, he’s double checking, he knows how important accuracy is” and this eventually led to checkers commenting on my accuracy. insensitivity to pain After the injury it seemed as if I did not feel pain, which is probably why I started refusing any pain medication in hospital. One day, I burnt my hand with an oxy-torch. I could see the heavy leather glove wrinkling and smoking,

so removed the glove and some of my skin came off with it. Workmates thought I was very tough to cope with the pain, but the reality was I did not feel pain the same way after my brain injury. This is actually very scary when working around machinery and can be very dangerous. adjusting expectations I’ve always taken great pride in my ability to do my job well, so it has been difficult to accept that I may make more mistakes now, or not cope as well with multiple tasks or changes. I know I did make a great recovery though, as various people were laid off as the global financial crisis hit, but I kept my job until having a run in with a supervisor who unfairly put me on a list of staff to be retrenched. I’m still very fortunate, as I know many people can never work again after their brain is injured. In retrospect losing my job was probably a good thing as it forced me to start actually using what was left of my brain to start writing. And it is growing every day — my brain that is! This is an amended excerpt from a book written by Trevor Short called Overcoming Brain Injury. You can email Trevor for details of his book at tks3@optusnet.com.au

It offers support, advice, consultation and assessment services for people with an Acquired/Traumatic Brain Injury /Disability and their family at different stages of rehabilitation and during transition phases. The service has networked extensively with allied health and community services to provide the best possible outcomes for clients with acquired brain injury. What services do they provide? The Assessment and Planning Service provides functional and comprehensive assessments for people with Acquired Brain Injury /Disability and their families. These assessments may occur in the home, in the hospital or community facilities and are guided by a model of client-centred planning and strengthbased practice. The Assessment and Planning Service provides experienced case managers who can assist clients or their decision maker to identify appropriate options based on a client-specific assessment. Eligibility: • Be under 65 years of age; • Have an Acquired Brain Injury or other disabliity, • T he client must have a funding package, be compensable or able to pay privately. E.g. Government funding, funding from insurance, or private funding. ◗◗

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S Safe sex There are four main risks that arise from sexual activity. These are unwanted pregnancy, contracting a sexually transmitted disease, physical, or psychological injuries. Sexual activity that involves sexual intercourse or even contact of semen with the vagina or vulva carries the chance of pregnancy. People who want to engage in such behaviours with a reduced chance of pregnancy employ any of a variety of available contraception methods, such as birth control pills, the use of a condom, diaphragm, spermicides, hormonal contraception, and sterilization. Sexual activity that involves contact with another person’s bodily fluids carries the risk of contracting a sexually transmitted disease such as those arising from HIV/AIDS, chlamydia, syphilis, gonorrhea, and HPV. Safer sex practices try to reduce these risks. These precautions are often seen as less necessary for sex partners in committed relationships, if they are known to be free of disease. Some people require potential sex partners to be tested for sexually transmitted diseases before engaging in sex. ◗◗ Adapted from http://en.wikipedia.org under the GNU Free Licence Agreement

After some info? People who have acquired a brain injury and their families know the devastating impact it can have on their lives. The diversity of the impact is reflected in the calls that our Association receives. Our Community Response Service responds to enquiries on all issues relating to Acquired Brain Injury. All calls are answered by the Community Response Officer who listens to the concerns of the caller, discusses the types of assistance or information that may be appropriate, and facilitates ways that the caller can access the required support or information. ◗◗

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Supporting memory in dementia by Dr Megan Broughton, Dr Erin Smith and Dr Rosemary Baker School of Health and Rehabilitation Sciences, The University of Queensland

Memory impairment is one of the main symptoms of dementia, but not all aspects of memory are affected equally.

People with dementia primarily have trouble learning and remembering new information, such as the details of a recent conversation or event. They also often have difficulty in retrieving words and names from memory, and in keeping track of tasks. However, memories for remote information, such as details from childhood and early adulthood, are usually preserved in dementia. People are also often able to maintain regular habits and routines, and to learn new ones if given plenty of practice. Based on this knowledge, researchers from the University of Queensland have devised RECAPS, a set of practical strategies for supporting memory and everyday skills in people with dementia. These strategies can also be used to assist people with memory difficulties caused by other types of brain impairment. RECAPS Memory Support Strategies R- Reminders Give verbal reminders or prompts to help the person remember important items (“Have you got your wallet?”) and people (“Here comes Susie, your sister.”). Visual reminders can also be helpful, such as signs with a word and photo on doors, cupboards and drawers to show where things are kept. To remind the person of appointments, visitors and other important information, put a ‘reminder centre’ in a prominent place with a whiteboard or pin-board, a diary or calendar, and a pen.

E- Environment Avoid making changes to the surroundings unless it is absolutely necessary, and keep items used every day in the same place to help the person automatically link things with particular locations. Items such as reading glasses are less likely to be misplaced if you set up a habitual place for them when they are not being used. A labelled basket (with a picture) kept in the same convenient spot will help the person both to find and return the glasses there. C- Consistent Routines To support memory for regular habits, keep up (or establish) familiar routines and do things in a consistent order. For example, get ready in the same sequence every time, have things happen around the same time each day, and try to do regular activities on the same day each week. Predictability in routine is important for reducing anxiety as well as for maintaining involvement in daily tasks. A- Attention To give the person the best chance of taking in information, reduce distractions (for example, turn off the TV) when you are explaining something. To focus attention, try to get eye contact, and bring any relevant items into the person’s line of vision. P- Practice Encourage the person to carry out tasks and activities that they have always done, and give them the chance to carry out tasks from start to finish, trying not to take over. This is important


T Tantric sex The idea of Tantric sex is most commonly associated with the Hindu religion. Tantric texts specify that sex has three distinct and separate purposes — procreation, pleasure and liberation. The Western world has focused on Tantric sex to add spice to a couple’s sex life by prolonging both intimacy and sexual intercourse. Orgasm is seen as a divine experience where sacred male and female energies meet. Sexuality is only one part of Tantric philosophy, which encourages playful experiences and awareness of the sacred nature of all perceptions, actions and gestures.

Tantric sex involves exercises to heighten sensory awareness, practice in various lovemaking techniques, and a focus on pleasure for the partner. The Kama Sutra is a Hindu sex manual compiled in the second century that embodies many ideas from Tantric sex, including prolonging the pleasures of lovemaking without reaching orgasm. This is a common way for couples to rediscover their initial feelings of love. You can buy books on this practice from your local bookstore or online. ◗◗

A story to tell? to help the person maintain skills for as long as possible. You may need to help by giving prompts and reminders, and by modifying the task so that the person can continue to contribute. When the person needs to learn something new, provide opportunities for plenty of practice. Try to leave some time between practices and keep the practice natural. Use the same prompts and reminders each time. S- Simple Steps To compensate for difficulties with keeping track of the task at hand, break tasks into simple steps, and try giving one instruction at a time.

You may also need to give reminders about the order of steps. Allow extra time to complete activities as it may take longer for the person to do things. The authors, Dr Megan Broughton, Dr Erin Smith and Dr Rosemary Baker, are part of a research team at The University of Queensland. The team is led by Professor Helen Chenery, and is investigating memory and communication support in dementia. The next issue of Bridge will feature their next article, “MESSAGE”, a set of practical strategies to support communication in people with dementia. For more information, email Dr Erin Smith at e.smith1@uq.edu.au

The focus of the next issue of Bridge is the cost of a brain injury. We would like to invite our readers to consider submitting a personal story that looks at the impact a brain injury has had on their lives. Your story contribution will not only be read by thousands of Synapse readers, but will also feature in our international online version. Personal stories are particularly helpful to our readers, as they can learn valuable lessons from your experiences. Ideally a personal story will focus on a particular issue (i.e. coping with fatigue, depression, paralysis, anger or the demands of being a carer) and explain the coping mechanisms that worked for you. Readers benefit most from stories that provide hardwon knowledge on how to deal with these issues. Please ring Synapse on 07 3137 7400 or email bmorris@synapse.org.au ◗◗

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U Under the weather Shakespeare is usually credited with having said that alcohol “increaseth the desire but decreaseth the performance”. As with so many aspects of the human condition, he was certainly right. Alcohol loosens our inhibitions, so our basic sexual impulses will be less restricted after a drink or two. However, alcohol depresses our central nervous system and our actual ability to engage in sexual intimacy quickly starts to deteriorate the more we drink. There is also the increased risk of unsafe sex and sexual assault. Much of the research on the effects of alcohol on sexuality has focused on the physiological rather than social. Because of this, the long term social sexual effects, such as difficulty maintaining long term relationships, depression, and social isolation are underrepresented in the research. It is interesting to note that the sexual effects of alcohol on women seem to be very different than the sexual effects of alcohol on men.

A heavy ongoing dependency on alcohol has a severe effect on sexuality, including: • impotence in men • loss of sexual desire in men and women • Difficulty experiencing orgasm for men and women. Given that alcohol can have so many negative impacts for someone who has a brain injury, even that one or two drinks that may enhance sexual intimacy should be very carefully considered before drinking. ◗◗

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Contraception History has seen its fair share of birth control methods with the most effective, of course, being abstinence.

Contraception has been practised in many cultures for thousands of years. With sex holding the enjoyment it does, many people want to have intercourse but without the risk of pregnancy. Common methods in the past included coitus interruptus (pulling out before ejaculation), barrier methods (to block sperm), and herbal methods (to kill sperm or induce abortions). Barrier methods included Asian women having used oiled paper as a cervical cap, while Europeans may have used beeswax. A primitive version of the modern condom appeared in the 17th century, made from animal intestine. Barrier methods The male condom is the most popular barrier method, and also provides excellent protection from most sexually transmitted infections (STIs). Female barrier methods include the contraceptive sponge, the diaphragm and the female condom or femidom. Diaphragms are reusable and last for several years, but must be fitted by a doctor. Hormonal methods There are variety of delivery methods for hormonal contraception which involve combinations of synthetic oestrogens and progestins. The most common method is the pill, but there is also a patch, a contraceptive vaginal ring, intramuscular injections and contraceptive implants. Intrauterine devices (IUDs) These are contraceptive devices which are placed inside the uterus. They are sometimes shaped like a “T” but the common type in Australia is more hook-shaped. There are two main types of intrauterine contraceptives: those that contain copper (which has a spermicidal

effect), and those that release a progestin. These make it impossible for eggs to attach to the wall of the uterus. These are best used when sex is with one partner only, as a sexually transmitted infection is very likely if the IUD abrades the lining of the uterus. Emergency contraception Emergency contraception (EC) is sometimes called ‘the morning after pill’, and can be taken after unprotected sex to prevent (an unplanned) pregnancy. It’s best to take EC as soon as possible, but it still offers some protection up to three days after unprotected sex. Copper intrauterine devices may also be used as emergency contraception. They must be inserted within five days of the birth control failure or unprotected intercourse. Abortion Abortion can be done with surgical methods, usually suction-aspiration abortion (in the first trimester) or dilation and evacuation (in the second trimester). Medical abortion uses drugs to end a pregnancy and is approved for pregnancies of less than eight weeks gestation. Abortion should not be considered as a means of birth control. Sterilisation Surgical sterilisation is available in the form of tubal ligation for women and vasectomy for men. A non-surgical sterilisation procedure, Essure, is also available for women. Other methods Fertility awareness methods involve a woman’s observation and charting of one or more of her body’s primary fertility signs, to determine the fertile and infertile phases of her cycle. Unprotected sex is restricted to the least fertile period.


V Vanilla sex Vanilla sex or conventional sex is used to describe what a culture regards as standard or conventional sexual behavior. Among heterosexual couples in the Western world, vanilla sex often refers to the missionary position, or sex that is overly conventional or unwilling to explore different techniques and styles. The important point is that everyone should feel comfortable with their sexuality, whether it is a bizarre fetish, or the straight missionary position with all the lights off! We shouldn’t criticise anyone for the choices they make, when the sex is consensual and does not offend or hurt others. ◗◗

Statistical methods such as the Rhythm Method estimate the likelihood of fertility based on the length of past menstrual cycles. Statistical methods are much less accurate than fertility awareness methods, and are considered by many fertility awareness teachers to have been obsolete for at least 20 years. Coitus interruptus, or the withdrawal method, involves pulling out before ejaculation. While it is better than no contraception at all, it is a risky method, especially because pulling out in time can be tricky, especially when under the influence of drugs or alcohol. Avoiding vaginal intercourse can involve anal sex, oral sex, or using the hands, breasts, armpits, or almost anything the imagination can come up with. This is the most reliable method of avoiding pregnancy (other than completely avoiding sexual activity). Most breast-feeding women have a period of infertility after child birth, so prolonged breast feeding can extend this natural birth control method for some time. The most effective methods? It is very difficult to say which methods are

best. User error is a big problem — for example the pill is usually very reliable, but it’s easy to forget taking it one day, or at the wrong time. And even the effectiveness of the pill can be affected by antibiotics and some illnesses. Another thing is that we should not only prevent unwanted pregnancies, but reduce our chances of sexually transmitted infections (STIs), so the condom is better than the pill in this respect. The best bet is to get yourself along to a free clinic, such as the Family Planning Clinics that cover Queensland. You can talk confidentially with a health professional about the best method of contraception for your situation, and even get free tests for STIs while you are at it. If you live in Queensland, call 3250 0240 to find the nearest clinic. If the person seeking contraception has a brain injury, it will be important to look at issues like impulsivity and memory loss when determining the best contraceptive method. An inability to remember to take the pill, or a lack of concern over using a condom, are powerful arguments for using other methods.

myths about contraception Modern misconceptions and urban legends have given rise to a great deal of false claims. While it may seem like a good idea to try to wash the ejaculate out of the vagina, douching does not work. If anything, douching spreads semen further towards the uterus. Some slight spermicidal effect may occur if the douche solution is particularly acidic, but overall it is not a reliably effective method. While women are usually less fertile for the first few days of menstruation, it is a myth that a woman cannot get pregnant if she has sex during her period. There are also no sexual positions that prevent pregnancy. Having sex while standing up, or with a woman on top, will not keep the sperm from entering the uterus. Other bizarre ideas? It is a myth that a female cannot become pregnant the first time she has sex, or by having sex in a hot tub. Sneezing after sex is also completely ineffective. Toothpaste cannot be used as an effective contraceptive, and urinating after sex does not prevent pregnancy and is not a form of birth control.

Lifetec & Synapse – Qld partners Synapse and LifeTec Queensland have become partners in delivering a training program that is touring across Queensland for 2011. Synapse’s Changing Behaviour for the Better seminar offers quality low-cost training to support anyone working in a role that requires the need to support others in managing their behaviour (see p. 27). Synapse and LifeTec Queensland share a common mission in that they work toward enabling others to live independently and, in doing so, improve quality of life. LifeTec Queensland provides free information and specialist advice on an extensive range of assistive technology (everyday assistive equipment and designs). “Rarely do you find two organisations with such a closely aligned strategic vision so our partnership with LifeTec Queensland is particularly special and there is great potential for extending our involvement” says Jennifer Cullen, CEO of Synapse. “For now the statewide training will indirectly benefit clients by solving challenges, improving access and independence.” Ian Rankin, Business Manager at LifeTec Queensland is equally positive about the new partnership. “LifeTec recognises the importance of aligning with organisations with similar strategic goals like Synapse as we endeavour to improve the quality of life of our mutual clients,” said Ian. LifeTec assists a wide range of people from all walks of life. Their clients include older people who wish to remain independent in their homes for as long as possible, as well as children and adults with a disability. Their clients may have health issues as a result of ageing or illness and simply want to make life easier. Lifetec Queensland employ health professionals to assist people to maximise their independence and their ability to manage everyday tasks whether in the home, workplace, or out in the community. To find out more visit their website at www.lifetec.org.au ◗◗

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W Warts

Why me?

Warts aren’t fun, especially on the most intimate parts of our body. They are caused by the Human Papilloma Virus (HPV). HPV is incredibly common – around 80% of people will get it, although the vaccine available now for young women should eventually change those figures. About 20 types affect the genital area, anus and cervix, through genital skin contact during sex (not by blood or other body fluids). Condoms provide only limited protection as they do not completely cover genital skin. Most people will have HPV but not know it unless warts develop or women have an abnormal Pap smear result. Testing for HPV is usually not necessary as the virus will clear naturally in one or two years, but women should have regular Pap smears every two years to reduce the risks of developing cervical cancer. There’s now a vaccine to prevent types of HPV mostly associated with cervical cancer. It’s most effective if given before sexual activity starts. The Australian Government has started funding HPV vaccines for girls and women aged 12/13 to 26. For more information, visit www.immunise.health.gov.au or your sexual health clinic. ◗◗

Behaviour seminar The Changing Behaviour for the Better seminar was developed by Synapse to offer quality low-cost training to support anyone working in a role that requires the need to support others in managing their behaviour. It has already been held in Toowoomba, Charleville and Logan. Other locations scheduled include Redcliffe (5/4), Caboolture (12/4), Maroochydore (19/4), Hervey Bay (10/5), Rockhampton (24/5), Roma (21/6), Mackay (4/7), Emerald (12,13/7), Longreach(25/7), Townsville (15/8), Mt Isa (30/8), Cairns (13/9), Mareeba (14/9), Atherton (15/9), Gold Coast (8/11), Beenleigh (2/11), and Ipswich (17/11). The workshop aims to thoroughly prepare staff and carers for the challenges they might face in working alongside people that exhibit complex or challenging behaviours. The day program (from 8.30am until 3.00pm) will include understanding behaviour, positive behaviour support, techniques and strategies for communication and interaction as well as approaches for managing in a crisis. Interested parties can register online at the Synapse website (www.synapse.org.au). To receive a copy of the course overview and registration form email training@synapse.org.au. Register your interest now by emailing training@synapse.org.au ◗◗

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Possible answers to tricky questions like “why did this happen to me?” Lives are usually turned upside down in the months following a brain injury, and the first two years are usually busy with rehabilitation and recovering as much as possible. But with time the big questions start emerging: “I’ve led a good life, so why was I left with a brain injury but the drunk driver who smashed into me was unscathed?” or “Why am I now the lifelong carer for my five-year-old son after encephalitis, what did he do to deserve this?” How we answer these philosophical questions can have a direct bearing on how well things turn out in the long run, as how we make sense of adverse situations is a key factor in our resilience, our ability to “bounce back”. why do bad things happen? So why do traumatic life events occur, seemingly regardless of how we live our lives? Let’s take a look at the major religions or schools of thought, in their order of popularity in the world: Christianity, Islam, Humanism, Hinduism and Bhuddism. Christianity on suffering It’s still the world’s most common religion, although Islam is catching up rapidly. As with any religion, there are diverse opinions and thoughts, but there are core beliefs. One purpose of God in allowing suffering is that it can lead to spiritual advancement, either through life hardships or through self-imposed trials (mortification of the flesh, penance and asceticism). The Bible’s Book of Job reflects on the nature and meaning of suffering, with one of the main conclusions being that we do not know God’s purposes, and aren’t really in a position to question Him about these either.

Redemptive suffering is the Roman Catholic belief that human suffering, when accepted and offered up in union with the Passion of Jesus, can remit the just punishment for one’s sins or for the sins of another. After one’s sins are forgiven, the individual’s suffering can reduce the penalty due for sin. Jesus often spoke about the coming rewards in heaven for those who were suffering in their earthly lives. Islam on why bad things happen Muslims generally believe that all good and bad comes from Allah. The central tenet of Islam is submission to Allah, which entails acceptance of both the good and bad things that may happen and enduring pain. Any muslim who faithfully follows Allah will eventually be rewarded by living in Paradise (jannath ul firdaus). Suffering is allowed by Allah as a test of one’s faith. Humanism on suffering and bad things In third place is Humanism. Humanists believe there is no guiding supernatural intelligence behind the universe, or that it, he or she doesn’t care to reveal itself or choose to be concerned about humans. So it is a chaotic universe where random events happen regardless of the desires, fears or prayers of around seven billion humans. Sometimes good things will happen, like finding a $50 note behind the couch, and other times bad things will happen: your child acquires a brain injury, you get a pimple, or the earth gets burned to a crisp by the sun in 10 billion years time. Generally humanists believe that humans should care for each other, and that we can alleviate most suffering through a fair distribution of wealth, better health care systems and campaigns for encouraging things like helmets and air bags to reduce the incidence of brain injury.


Hinduism and why bad things happen Hinduism holds that suffering follows naturally from personal negative behaviours in one’s current life or in a past life. One must accept suffering as a just consequence and as an opportunity for spiritual progress. Thus the soul or true self, which is eternally free of any suffering, may come to manifest itself in the person, who then achieves liberation. Abstinence from causing pain or harm to other beings is a central tenet of Hinduism. Buddhism and adversity Buddha said that suffering was the outcome of the craving of one’s ego by chasing after things we think will lead to happiness, and continuing in our illusion of lonely separateness. Buddhism considers liberation from suffering and the practice of compassion as basic for leading a holy life and attaining nirvana. Buddhists don’t actually believe in a God, which is why they often say Buddhism is not a religion. Bad things that happen have not been set in order by a higher power, but are usually a natural consequence of having done bad things, probably in a previous life. Making sense of a brain injury If we can find a reason for having acquired a brain injury, it is very likely to be influenced by your belief system. The more positive this reason is, the more motivated you will be in the rehabilitation process. This stands to reason; if you believe you are being punished for your sins in this life (or a previous one) then it will be harder to throw yourself into the recovery process. But if you believe that adversity is a chance to grow stronger then you will reap the benefits of a faster recovery. maximising your recovery Those who make the most of the rehabilitation process tend to have an optimistic outlook, are usually more giving and selfless than most people, and don’t tend to give up easily. Those who do the best usually look upon negative

experiences as a chance to grow and develop themselves further. A very powerful strategy is training yourself to always look for the positive side to any negative situation. For example, cognitive deficits can be viewed in a different way. An inability to work means opportunities to develop hobbies such as art or gardening. Lack of energy means taking more time to ‘smell the roses’. Wrestling with depression gives an insight into the pain and suffering of others, and allows you to support them more effectively. Many people have made sense of their brain injury by seeing how they can now help others. They may attend or even initiate a support group where they can share their hard-won lessons with others, or write of their experiences. For those who can work, an option is volunteer or casual work supporting others. For others, a spiritual approach or commitment to self-improvement may be the key. Each cognitive deficit is seen as an opportunity for self-growth and further development, not just as a disability. Remarkably, people often find that even many years post-injury, they still find themselves gradually improving in some areas with this approach. Some even come to appreciate how a brain injury has made them a more thoughtful, stronger person because of the many challenges faced and worked through. WHAT THE FAMILY CAN DO Families can help their loved one by putting strategies in place to avoid or lessen the postrehabilitation slump. Work with them on developing new goals and activities before rehabilitation tapers off. Contact your State Brain Injury Association for support groups and activities that may exist in your area. A counsellor can also help the survivor with their new identity. As one survivor put it, “For survival we must let go of what was, in order to become what we will be”.

resilience: the art of bouncing back from adversity Resilience is our capacity of people to cope with stress and “bounce back” from adverse situations like acquiring a brain injury. Research indicates the key elements to resilience are relationships that provide care, support, trust and encouragement, the capacity to make realistic plans, self-confidence, rebuilding communications skills, and the capacity to manage strong feelings and impulses. A number of other factors that promote resilience have been identified: • A willingness to seek and accept external support • Good problem-solving skills and ability to cope with stress • Believing that you can manage your feelings and cope • Being connected with others, such as family or friends • Self-disclosure of the trauma to loved ones • Spirituality • Having an identity as a survivor as opposed to a victim • Helping others • Finding positive meaning in the trauma.

X X-rated Pornography has been around for thousands of years, but particularly took off in the western world in the 1980s due to the VCR, DVD and Internet. Depictions of a sexual nature are as old as civilization (and possibly older, in the form of Venus figurines and rock art). Nineteenth century legislation outlawed the publication, retail and trafficking of certain writings and images regarded as pornographic, and would order the destruction of shop and warehouse stock, meant for sale. However, the private possession of and viewing of (some forms of) pornography was not made an offence until recent times. When large scale excavations of Pompeii were undertaken in the 1860s, much of the erotic art of the Romans came to light, shocking the Victorians who saw themselves as the intellectual heirs of the Roman Empire. They did not know what to do with the frank depictions of sexuality, and endeavoured to hide them away from everyone but upper class scholars. Pornographic film production commenced almost immediately after the invention of the motion picture in 1895. Two of the earliest pioneers were Eugène Pirou and Albert Kirchner. Kirchner directed the earliest surviving pornographic film for Pirou under the trade name “Léar”. The 1896 film, Le Coucher de la Marie showed Louise Willy performing a striptease. Pirou’s film inspired a genre of risqué French films showing women disrobing and other filmmakers realised profits could be made from such films. Denmark was the first country to legalize pornography in 1969, which led to an explosion of commercially produced pornography. It continued to be banned in other countries, and had to be smuggled in, where it was sold “under the counter” or sometimes shown in “members only” cinema clubs. There are many views on pornography. Feminists say it encourages the objectification and domination of women. Religions tend to view sex as a sacred activity only to be enjoyed with one’s spouse. Studies show that increased availability of pornography in a society equates to a decrease in sexual crime. Some researchers speculate the availability of pornography may reduce crimes by giving potential offenders a socially accepted way of regulating their own sexuality. Writer Salman Rushdie, and porn producer Larry Flynt, have argued that pornography is vital to freedom, and that a free and civilised society should be judged by its willingness to accept pornography. ◗◗

This information is under the GNU Free License Agreement, and is derived from http://en.wikipedia.org/wiki/Psychological_resilience

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Y Yes yes yes

Brain injury & ageing by Marilyn Lash, M.S.W.

What can we do to minimise the double whammy of ageing and brain injury?

When you get down to it, the most basic rule for sex is consent. Whatever you do, it must be with the other person’s consent, whether it is flirting, touching, kissing or intercourse. Even if you are well into sex, the other person has the right to change their mind. You must stop, or potentially face sexual assault charges. How do you know if you’ve got consent? Initially you need to watch the other person’s body language for signs they are uncomfortable. If there is any doubt, simply ask. The moment someone says they want to stop then you must do so, or face heavy legal consequences. Conversely, you have the right to say “no” to any sexual activity if you are uncomfortable or change your mind, even once it has commenced. This particularly applies when there is no contraception being used!

Invisible disability Acquired Brain Injury is a complex disability that can happen to anyone regardless of ethnicity, age, gender or social status. In Australia, around one in 45 Australians live with an Acquired Brain Injury, which causes limitations in their day-to-day lives. Of those living with ABI, three quarters are under 65. Acquired Brain Injury is a common but hidden disability in the community. For this reason it is often named “the invisible disability,” as the nature and impacts of brain injury are neither well understood nor recognised. The sometimes subtle cognitive, behavioral and emotional changes that can come with acquired brain injury are often not recognised by those who do not have knowledge of ABI. Instead there is potential for the effects to be mistaken for a character flaw, drunkenness or ‘other condition,’ leading to inappropriate treatment or exclusion. ◗◗

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The number of elderly people has increased dramatically along with the number of people with disabilities who are ageing. The overall death rate from traumatic brain injury decreased with advances in long-term medical care, rehabilitation and social support. However, successful ageing is more than simply living longer. It involves maintaining physical, cognitive and social functions (Aravich & McDonnell, 2005). Little is still understood about the longterm impact of a traumatic brain injury, yet researchers estimate that overall life expectancy may be reduced by seven years. Predictors of premature death among survivors of traumatic brain injury include older age, unemployment when injured, and presence of disability when discharged from rehabilitation. Circulatory and respiratory diseases, seizures and choking have been linked to increased death rates among long-term survivors. Traumatic brain injury increases the risk of Alzheimer’s disease (Aravich & McDonnell, 2005). While many people fear old age, ageing is not a disease. Most of us are familiar with changes among elderly people in what is called “fluid intelligence” — examples are decreases in processing speed and memory span. On the positive side, ageing usually is accompanied by an increase in “crystallised intelligence” as demonstrated by an older person’s fund of general information and vocabulary (Aravich & McDonnell, 2005). Because the more disabling

effects of a traumatic brain injury are cognitive changes, many families and survivors fear the double whammy of ageing with an injured brain. What can be done? 10 rules to promote successful ageing in survivors of TBI Aravich and McDonnell suggest the following: • Take care of the survivor’s heart • Exercise the survivor’s body • Exercise the survivor’s brain • Feed the survivor’s brain • Promote mental health in the survivor • Avoid tobacco, alcohol and other drugs of abuse • Avoid social isolation • Protect the survivor’s brain • Form more partnerships and friendships • Look for greatness in each person. Ageing of survivors Facts about mental health after brain injury: • Suicide accounts for two-thirds of all traumatic brain injury firearm deaths • Traumatic brain injury increases the lifetime risk of depression by 54% • A mild traumatic brain injury increases the risk of a mental illness within 6 months • Depression affects successful ageing by reducing quality of life and increasing the risk of cardiovascular disease and Alzheimer’s • Estimates are 57% of persons with traumatic brain injury were heavy drinkers before their injury (Aravich & McDonnell, 2005).


Z Zoom zoom

The stereotype of men rushing into intercourse before their partner is ready is unfortunately often true. Foreplay consists of intimacy that prepares a couple for intercourse. Any act that creates and enhances sexual desire in a sexual partner may constitute foreplay, including stripping, kissing, touching, embracing, talking, and teasing (e.g. erotic sexual denial) and oral sex.

Ageing After Head Injury A review of the literature by Gaultieri and Cox identified five delayed sequelae of traumatic brain injury: • Delayed amnesia • Affective disorders • Post-traumatic epilepsy • Post-traumatic psychosis • Dementia. Among the affective disorders, depression is a common condition that can complicate recovery from a brain injury both during the acute and long-term stages. It can be complicated to treat because it is a combination of neuroanatomical, neurochemical and psychosocial factors. Other contributing factors are social isolation, unemployment, and less leisure activity as survivors struggle to build a new life in the community (Trudel, Felicetti & Mozzoni, 2005). Depression Depression is not the only major disorder found among survivors. Gaultieri and Cox also found that psychosis following brain injury was found among two to five percent of people with mild or moderate injuries and among 10% or more among those with severe injuries (Trudel, Felicetti & Mozzoni, 2005). Post-traumatic epilepsy This was found to be a contributing factor to the probability of developing a psychosis. The risk of developing post-traumatic epilepsy

is related to the nature and extent of the brain injury. A mild to moderate brain injury increases the risk by two to five times; a severe brain injury by 10 times; and a penetrating brain injury by 50 times (Trudel, Felicetti & Mozzoni, 2005). Alzheimer’s disease Three factors have been identified as risks for Alzheimer’s: age, family history of Alzheimer’s or Down’s syndrome, and traumatic brain injury. Because a brain injury can result in the death of neurons and weakening of the blood-brain barrier, one theory is that the brain is more vulnerable to neurotoxins. The deposit of betaamyloid in the brain has been found in young and old persons with brain injury upon autopsy. This protein has been linked to the formation of senile plaques found in Alzheimer’s disease (Trudel, Felicetti Mozzoni, 2005).

Psychologically, foreplay lowers inhibitions and increases the emotional comfort of the partners. Physically, it stimulates the process that produces an erection in men, and in women it helps stimulate the process that leads to erection of the clitoris, raising of the cervix (elongation of the vaginal canal), and the production of vaginal lubrication, allowing penetration to take place comfortably and effectively. Foreplay can vary dramatically based on age, religion, and cultural norms. In spite of the clichéd modern folklore that women demand more foreplay and require more time to become physically aroused, recent scientific research refutes that myth. Scientists from McGill University Health Centre in Montreal, Canada used the method of thermal imaging to record baseline temperature change in the genital area as the definition of the time necessary for sexual arousal. Researchers studied the time required for an individual to reach the peak of sexual arousal and concluded that, on average, women and men spend almost the same time for sexual arousal — around 10 minutes. This, however, does not take into account the amount of time necessary to become mentally aroused. ◗◗ Adapted from http://en.wikipedia.org under the GNU Free Licence Agreement

Conclusion Brain injury is not a short-term condition, rather it is a chronic condition requiring many services and supports over the life time of an individual. SOURCES Aravich, P. & McDonnell, A. (2005), “Successful Aging of Individuals with Brain Injury”, Brain Injury/Professional 2(2). Trudel, T, Felicetti, T, Mozzoni, M. (2005), “The Graying of Brain Injury: An overview”, Brain Injury/Professional 2(2). Reproduced with permission from Lash & Associates Publishing/Training (www.lapublishing.com)

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002 - Bridge Magazine - Sexuality & Brain Injury (2011)  

Bridge magazne about Brain Injury and sexuality