[BLOG POST] Sex – The Final Frontier

Sex After Brain Injury and Trauma –

Normalizing the Approach, Removing The Stigma

Compiled By: Caren Robinson

What in the world is this comment about sex being the “final frontier”? Okay, let me explain.

We are not talking about Star Trek here, though its reference to “Trekkies” is well known. The “final frontier” references space and how space is truly massive. It is estimated that the Universe is 100 billion light years across and still expanding. It’s “final” because it is assumed that our species (as humans) will never survive long enough (in our current form) to explore it all; it means that the voyages of outer space are continuing as we explore and discover strange new worlds; seek out new life and new civilizations.

What does any of this have to do with sex you ask, or removing its stigma? It can seem quite daunting learning all there is to know about sex. There is so much to learn about the body. We are still making discoveries, gaining knowledge, and opening up new opportunities for awareness as time marches on. We are only just beginning to discover how our brain and bodies are connected, how hormones change, how gender differences and other forms of trauma affect rehabilitation and healing processes; and how best to nurture neuroplasticity. We are just touching the surface of how our bodies change during and after trauma. I am certain this will be a discussion that continues as science and studies evolve. However, now, in this moment – let’s get back to the topic at hand.

What’s not to love about feeling good and enjoying feel good touch, closeness, intimacy, and unbridled pleasure? Some may refer to this experience as being “turned on”. However, what happens when that getting “turned on” experience stops working and suddenly becomes mysteriously illusive by getting “turned off”.

I became interested in this topic in the quest for exploring my own experience with my own sexuality changes after being struck with a polytrauma and traumatic brain injury as a result of a 2014 motor vehicle accident. Consensual sex has been an incredibly important and enjoyable part of my development as an individual, a woman, and as a wife. When I first started having sex I found it to be quite pleasurable, and a treasure hunt of sorts to new lands of awkward fumbling, exploratory kinks, taboo experimentation, joyful and explosive orgasms, and body riveting transcendent experiences. My libido was….what I assumed… normal. However, later I would learn when comparing with my other female friends, quite a bit higher than most of my counterparts. What can I say?….I loved sex and all the things that came with the consensual experience. I think sometimes, my desire outweighed the interests of my partner and that could get complicated sometimes. We always found the humor in it – that is, until the accident.

After the wreck, so many things changed about my body. I had…and still have, so many things going on, on so many levels. I was dealing with orthopedic injuries, multi-system issues, endocrinological changes, difficulty breathing as a result of injuries sustained, a traumatic brain injury, cognitive changes, mobility issues, no libido whatsoever, and the sudden inability to do anything myself, including take care of my own body (dressing, bathing, etc) I also suddenly stopped having my menses (medically referred to as amenorrhea).

Okay, here’s some extra-extra that is a bit, you know, EXTRA! In the last 9 years (as of this writing anyway) of this rehabilitative journey, I have had my menses a total of about 4-5 times. On one hand, yay, no messes to contend with. On the other hand this comes with a whole host of potential medical cascading issues for the future – none of which are foreboding of good health and great times. In this part of my life, I continue to live on the precipice of a continual balance between fear and relief. I have not had a thriving and spontaneous libido during that whole time…probably less than the number of times I have had my menses. It sputters, it comes and goes, or just lies dormant just out of my reach and ability to find it. Talk about a mood killer. I couldn’t understand it. My mental interest and desire, and more often than not – lack of interest and desire, was not matching what my body was willing to receive or give in contrast to attempted experiences of the sexual part of me that seemed to be perpetually “turned off”. This dramatically affected me as an individual, a woman, and my relationship with my husband as his wife. God bless him – he has the patience of Job (bible reference there). This brought me to a serious hunt about, “what the hell was going on with my body, and why?” Surely other people had or were experiencing this same strange phenomenon. Guess what? I discovered in my research…that they were! Why did I have to find out about this on my own instead of having this discussed as an important part of my rehabilitation plan by the medical professionals who should have been educating me? I had so many questions!

This blog’s proposed focus is to discuss the relationship changes that take place in the intimate aspects of a relationship after brain injury and trauma. One of the many questions I let guide my research was what changes can happen regarding intimacy and sex after a blunt trauma and what are some ways to adjust to those changes? Another question was how can we normalize talking about sex, identify any changes in the sexual aspect of a person’s life, and the importance of one’s sexual identity as part of the healing process or the rehabilitation plan after a trauma? How can we address the stigma that individuals with disabilities or mobility issues are not human beings with desires, needs, and an interest in that part of their lives?

I am hoping that the blog will accomplish opening up a dialogue about a seemingly taboo topic, rarely even discussed by healthcare professionals with their patients. I am hoping that it will help “normalize” the conversation about sex, our understanding about how sex affects our health, and how a person can manage any changes they may be experiencing after having a change in the way they engage sexually with their partner after a trauma. Viewing sex as an important topic in a rehabilitative care plan along with the other body systems, is worth addressing.

Brain injury is a growing health care crisis in our Country as is the awareness of mental health issues. Changes in intimacy/sexual relationships is quite common after brain injury, yet this isn’t widely discussed. A person’s body goes through numerous endocrinological changes that can affect libido, ability to perform, etc.

Common characteristics for persons with moderate traumatic brain injury include long and short term memory loss, being easily distracted, quickly angered, inability to solve problems, get tired quickly, and difficulties with sexual desires (Sica, 1996).

Many patients with brain injuries report physiological sexual disturbances and decreased sexual ability (Kreuter M;Dahllöf AG). Women with traumatic brain injuries (TBI) have been historically underrepresented in clinical research. Compared to the sexuality of women with neurodisabilities, male sexual problems and treatments are better documented (Bell, K. R., & Pepping, M.) Based on this high level of commonly reported changes as a result of a traumatic brain injury, it is important to inform patients about possibilities of optimizing their sexual ability. Programs organized to provide sexuality education should be an integral component of TBI rehabilitation. (Kreuter M;Dahllöf AG)

Sexuality, even before brain injury, is one of the most complex aspects of life. Sexuality can be seen on the pyramid in the hierarchy of needs for every human being since physical touch, intimacy, and love are an important and essential part of not just living life, but having quality of life as part of that existence. This is further evidenced by the works of Maslow.

In Maslow’s Hierarchy of Needs Theory, the specific needs are listed in detail in a hierarchy of needs pyramid (Maslow, 1970). Maslow’s Hierarchy of Needs is used today for assessing a person’s quality of life (Collins, Lanham, & Sigford, 2000). Health-related quality of life is affected by the person’s physical health, psychological state, level of independence, social relationships, and how these factors combine with one’s environment (World Health Organization)

Maslow developed five levels of the hierarchy of needs; physiological needs, safety needs, love needs, esteem needs, and self-actualization needs (Maslow). The bottom two levels are physiological needs and safety needs which, together, make up basic needs. Physiological needs are biological in nature. For example, the needs for oxygen, food, water, and a relatively constant body temperature are parts of physiological needs. These needs are the strongest, because if the person does not satisfy these needs, then the person would die. Safety needs are the establishment of stability for oneself. Next are social and esteem needs—also referred to as psychological needs. Love and belongingness are the needs to help escape loneliness and alienation and causes a person to have a sense of belonging and a sense of being loved. Esteem needs have to do with people needing a stable high level of self-respect, and respect from others. Self- confidence and feeling valuable are also part of this level. If these esteem needs are not met, the person feels inferior, weak, helpless and worthless. Self-actualization needs are at the top level of Maslow’s pyramid, and someone who is self-actualized is said to be at (or in the pursuit of) their full potential. The need for self-actualization is the desire to become more and more what one is, to become everything that one is capable of becoming. The person who has all the other needs can maximize his or her potential (Maslow, 1970).

Sexuality, while complex, becomes even more complex when you add to it, damage from an injury or trauma that causes changes to that quality of life. Brain injury can directly and indirectly affect important aspects related to sexuality and sexual function. (Moreno JA). To date, there seems to be no study that addresses the possible interventions that can improve awareness of deficits and perceptions of quality of life of persons with traumatic brain injury.

Specifically, examining whether interventions can successfully improve perceptions of quality of life and awareness of deficits are not often seen in the literature. (Chandrashekar, R. 2005)

A brain injury commonly alters sexual functioning as well as desire. It causes a decreased ability to achieve an erection, decreased ability to experience orgasm, decreased sexual desire and diminished frequency of intercourse. A high degree of physical independence and maintained sexual ability were the most important predictors for sexual adjustment. (Kreuter M;Dahllöf)

Two Types of Brain Injury

There are two types of acquired brain injury: Traumatic and Non-Traumatic

The first and most common is called a Traumatic Brain Injury (TBI). A traumatic brain injury (TBI) is defined as an alteration in brain function, or other evidence of brain pathology, caused by an external force. Traumatic brain injuries are defined as closed (or non-penetrating), or open (penetrating).

The most common causes of TBI are:

• Falls
• Motor Vehicle Accidents
• Violence (assaults, child abuse, beatings, domestic violence, gunshot wounds, etc)
• Injuries from sports or during combat (such as blast injuries from explosions)

Severe head injuries usually result from crushing blows or penetrating wounds to the head. Such injuries crush, rip and shear delicate brain tissue. This is the most life threatening, and the most intractable type of brain injury. TBI can also cause epilepsy and increase the risk for conditions such as Alzheimer’s disease, Parkinson’s disease, and other brain disorders that become more prevalent with age.

Repeated mild TBIs occurring over an extended period of time (i.e., months, years) can result in cumulative neurological and cognitive deficits. Repeated mild TBIs occurring within a short period of time (i.e., hours, days, or weeks) can be catastrophic or fatal.

The second type of non-traumatic brain injury is often called an Acquired Brain Injury (ABI). A non-traumatic brain injury causes damage to the brain by internal factors, such as a lack of oxygen, exposure to toxins, drugs, pressure from a tumor, etc. Examples of an ABI are:

• Stroke
• Near-drowning
• Aneurysm
• Tumor
• Infection disease that affects the brain (ie: meningitis)
• Lack of oxygen supply to the brain (ie: heart attack)
• Drug Use

This blog specifically is focused on the research surrounding TBI’s, yet there are similar issues for those with ABI as well.

“Twenty percent of spouses/partners of persons with TBI reported sexual dysfunction, and 44% reported dissatisfaction with sexual functioning. Sixty-two percent of spouses/partners reported a decrease in sexual activity during the year postinjury, 34% reported a decrease in sexual drive or desire, and 34% indicated that sexuality was less important in comparison to preinjury. The sexual functioning of spouses/partners of persons with TBI was highly associated with the sexual functioning of the person with TBI. Age of spouses/partners and sexual functioning in persons with the TBI were significant predictors of spouses’/partners’ sexual functioning, even after controlling for sex of partners and the physical, cognitive, participation, and sexual functioning of the persons with injury”. (Sander AM;Maestas KL;Pappadis)

Rehabilitation professionals should provide education on the potential impact of TBI on sexual functioning for both persons with TBI and their spouses/partners, and integrate the assessment of sexual functioning into their clinical assessment, making appropriate referrals for therapy.

Where does our sexuality come from in our brains? “It is clear that frontal especially prefrontal lobe plays a role in sexual functioning as the cognitive functions are controlled by these areas and are significantly correlated with sexual functioning. The frontal lobe plays a valuable role in a person’s ability to plan, organize, emotional and behavioral control, personality, problem-solving, attention, social skills, flexible thinking and conscious movement. Injury to this area can cause problems such as inappropriate sexual behavior, difficulties with initiating sexual activity or difficulties with motivating oneself to engage in sexual activity. It can also cause difficulties with experiencing pleasurable and sexual sensations, spontaneity, and the build-up of arousal.

The temporal lobe plays a role in a person’s memory, recognizing faces, generating emotions, and language. Injury to this area has been linked to an increase in sexual interest and emotions (hyperactive sexuality), although it can also result in a reduced sex drive (hypoactive sexuality). Some people who have had temporal lobe injury have also been found to develop paraphilias (abnormal sexual interests that can sometimes be dangerous or illegal). Damage to pathways in the frontal and temporal lobes has been linked to difficulties in understanding whether someone else is interested in sexual contact, for example through body language and ‘reading’ emotions.

The parietal lobe plays a role in a person’s perception, spatial awareness, manipulating objects, and spelling; Wernicke’s area – understanding language; Broca’s area – expressing language. Seizures in this part of the brain can cause some brain injury survivors to experience sensations in their genitals, including heightened sexual arousal or sensations that are not pleasurable. For some survivors these sensations can even be irritating or painful.

The hypothalamus and pituitary gland parts of the brain are responsible for producing hormones in the body that regulate sex drive. Damage to these parts can therefore result in hormonal problems.

Brain injury is known to cause changes in thinking, behavior and body function which alters the way a person experiences and expresses their sexuality.

Changes to sexual behavior after brain injury could include erectile problems, reduced libido, the inability to orgasm, and the reduction in frequency of sex….or the increase and uncontrolled acting out of sexual behaviors/acts.” (Robinson, C. – 2021)

The following changes in sexual functioning can happen after brain injury in men and women alike:

• “Decreased/Increased Desire: Many people may have less desire or interest in sex. Some people have increased interest in sex after brain injury and may want to have sex more often than usual. Others may have difficulty controlling their sexual behavior. They may make sexual advances in inappropriate situations or make inappropriate sexual comments, or vocal outbursts randomly.
• Decreased Arousal: Many people have difficulty becoming sexually aroused. This means that they may be interested in sex, but their bodies do not respond to the touch felt that would normally stimulate sexual arousal. Men may have difficulty getting or keeping an erection. Women may have decreased vaginal lubrication (moisture in the vagina), or lack of sensation in the clitoral/vulva areas.
• Difficulty or Inability to Reach Orgasm/Climax: Both men and women may have difficulty reaching orgasm or climax. They may not feel physically satisfied after sexual activity, or feel guilty for not coming to climax with their partner.
• Reproductive Changes: Women may experience irregular menstrual cycles or periods.

Sometimes, periods may not occur for weeks or months after injury, or may stop altogether. They may also have trouble getting pregnant and develop signs of infertility. Men may have decreased sperm production and may have difficulty getting a woman pregnant.” (Robinson, C. – 2021)

This begs us to then ask questions about what causes changes in sexual function after brain injury? There are many, including some that are related to the brain itself. Others are

related to specific physical problems or changes in how a person may be thinking about sex or their relationships in general. Perhaps they have developed personality changes which have changed how they feel about the people they associate with.

There are many reasons sexual problems happen after someone has a brain injury. Some are directly related to the damage to the brain itself. Others are related to physical problems or changes in how the person is thinking about sex or relationships in general. They may also have had personality changes which causes them to change how they feel about the person(s) they are in relationship(s) with.

“Possible causes of changes in sexual functioning after Brain Injury include:

• Damage to the Brain: Changes in sexual functioning may be caused by damage to the parts of the brain that control sexual functioning.
• Hormonal Changes: Damage to the brain can affect the production of hormones, like testosterone, progesterone, and estrogen. These changes in hormones affect sexual functioning.
• Medication Side Effects: Many medications commonly used after brain injury have negative side effects on sexual functioning.
• Fatigue/Tiredness: Many people with brain injury tire very easily. Feeling tired, physically or mentally, can affect your interest in sex and your sexual activity.
• Problems with Movement: Spasticity (tightness of muscles), physical pain, weakness, slowed or uncoordinated movements, and balance problems may make it difficult to have sex.

• Self-Esteem Problems: Some people feel less confident about their attractiveness after Brain Injury. This can affect their comfort with sexual activity, their ability to perform, or their perception of how they may or may not perform.
• Changes in Thinking Abilities: Difficulty with attention, memory, communication, planning ahead, reasoning, and imagining can also affect sexual functioning.
• Emotional Changes: Individuals with brain injury often feel sad, nervous, or irritable.

These feelings may have a negative effect on their sexual functioning, especially their desire for sex.

• Changes in Relationships and Social Activities: Some people lose relationships and friendships after brain injury or may have trouble meeting new people. This makes it difficult to date, build meaningful relationships, or find a sexual partner they are confident with, if they find one at all.” (Robinson, C. – 2021)

How do people with disabilities experience and engage with themselves as sexual beings? We have clearly established that while sexuality will remain a complex part of our lives, it has the potential to be greatly affected by brain injury and the cascading symptoms of that injury.

This cascade of symptoms can lead to dynamic changes to an individual’s ability to identify with their own sexuality in a familiar way and may change their outlook and experiences altogether. Sometimes these changes result in disabilities that may or may not be physically seen.

The sexual lives of people with disabilities have been disregarded and stigmatized. As a result, sexuality as a form of pleasure and an expression of love is not taken into account or even recognized for individuals with disabilities.

While one may concede that sexuality is a basic human need, awareness and knowledge about sexuality are shaped through a range of contextually specific sociocultural and religious ideas and practices. People with disabilities are systematically denied access to knowledge about sexuality, sexual behavior and services leading to their sexual marginalization. In addition to financial barriers and provider attitudes, other disability-specific barriers included relying on a known person, often a family member, to attend health clinics, which infringed their privacy and confidentiality. Enabling disability to be advanced at the national level in all development processes, would lead not only to young disabled people but also to non-disabled people receiving improved access to sexual health information, protection, and treatment.

“More than 15% of the world’s population are affected by disability, including physical and sensory impairments, developmental and intellectual disability, and psychosocial disability. While it goes without saying that people with disability have equal rights to sexual and reproductive desires and hopes as non-disabled people, society has disregarded their sexuality and reproductive concerns, aspirations, and human rights. People with disabilities are infantilized and held to be asexual (or in some cases, hypersexual), incapable of reproduction and unfit sexual/marriage partners or parents. The sexual and reproductive health and rights (SRHR) of people with disabilities continue to be contested, and there are particular concerns in relation to women with disabilities. For women, disability often means exclusion from a life of femininity, partnership, active sexuality and denial of opportunities for motherhood.” (Addlahka, R., Heidari, S., & Price, J.)

What also is not taken into account during the rehabilitative process, is the endocrine and physiological changes that can take place as a result of a brain injury, and the resulting changes that can occur in a person becoming oversexualized or on the other end of the spectrum, having a change of, or lacking libido, as a result of those changes. This can impact dating, marriages, and one’s own personal expression. Sexual expression is influenced by cognitive and emotional processes and is dependent on functioning anatomical and physiological systems, in other words, our brains control our sexual organs and responses.

As a human being, it is natural to want to experience pleasure, enjoy the company of another person, experience the touch of another person, and want to enjoy intimacy with your partner (or yourself for that matter).

There are some things though, that must be considered…..and an ongoing conversation that I encourage you to allow to take place…. Not only between partners, but with your provider as well…. BEFORE engaging in sexual activities after a head injury or sustaining any bodily changes that makes a person have newfound limitations, mobility issues, or disabilities.

Now, not everyone who has had a brain injury will have endocrine or sexual changes as a result of that brain injury. Not everyone that has a disability, mobility issues, or bodily changes has had a brain injury. Having a disability, whether caused by a brain injury or not, does not make us less of a person. We may have to get creative with how we have been used to experience sex, intimacy, and the human touch – do things differently…but that’s okay. (Robinson, C. 2021)

“Before resuming sex with a partner, boyfriend, girlfriend, or spouse, talk about it with your doctor or therapist and be guided by their advice. Make sure you are clear and talk with your partner about your expectations, fears, and feelings, including consent. Communication is key! Remember to not put too much pressure on yourself, focus on pleasure…. and not technique.

You may need to change your same old lovemaking style and experiment with other sexual activities or incorporating different things….which can include

• oral sex and mutual masturbation
• utilization of sexual aids/toys/furniture
• to increase intimacy, concentrate on boosting the romance in your relationship by offering lots of affection, complimenting and saying nice things to each other and celebrating big and small occasions.

After a brain or body injury, it is just as important for you to protect yourself from unplanned pregnancy and from sexually transmitted disease as it was before your injury. Even if a woman’s period has not returned, she can still get pregnant. Even if she is having her period, she can still get pregnant. Here are some tips to help with birth control and protection from sexually transmitted disease.

• Do research to help figure out what method of birth control and protection from sexually transmitted disease are best for you.
• Because of changes in thinking abilities, it may be harder for you to remember to use protection or to remember to take it with you.
  • You can plan ahead by always carrying a condom or other method of protecting yourself and your partner.
  • For women who use birth control pills, or a device that must be replaced, using a calendar or alarm on a smart phone can help you remember to take the pills or change the device.
• If you are unsure whether your partner has a sexually transmitted disease or has been intimate with others who have such disease, it is safest to use a condom.
• If you have engaged in any risky sexual behavior, one of the best things you can do for yourself is to get tested for sexually transmitted diseases and get treated if you test positive.

Consent should not be assumed

“Each of us is responsible for making sure we have consent in every sexual situation. If you are unsure, it is important to clarify what your partner feels about the sexual situation before initiating or continuing the sexual activity. Consent should not simply be assumed by

• Age: Age of consent is a legal term for the age a person must reach to give consent to sex or sexual acts. If an adult engages in any sexual acts with someone below the age of consent, they are committing a crime called Statutory Rape.

Also, just because someone is legally of age to consent to sex in your State/Country, does not mean they are mentally competent to consent. Someone may be considered incapable of consent if they are physically, mentally, or developmentally disabled, including….for example….a Senior, with Dementia.

• Body language, Appearance, or Non-Verbal Communication: One should never assume by the way a person dresses, smiles, looks or acts, that they are consenting to, or want to have sex with you.
• Dating relationships or previous sexual activity: Simply because two or more people are dating or have had sex in the past does not mean that they are consenting to have sex with you.
• Marriage: Even in marriage, a person should not assume they have consent for sexual activity. Marital rape is as serious as any other sexual assault. Consent is required in all relationships, including married ones.
• Previous Activity: Consent to engage in one sexual activity at one time is not consent to engage in a different sexual activity or to engage in the same sexual activity on a later occasion…even if it is on the same day.

• Silence, Passivity, Lack of Resistance, or immobility: A person’s silence should not be considered consent. A person who does not respond to attempts to engage in sexual activity, even if they do not verbally say no or resist physically, is not clearly agreeing to sexual activity.
• Incapacitation: A person being in a coma renders that person incapable of giving consent. Someone who is in a coma is unconscious and has minimal brain activity. They are alive but cannot be woken up and show no signs of awareness. They are essentially unresponsive to their environment. Sex with someone in a coma is considered RAPE. Plain and simple. Other incapacitation can happen when Alcohol consumption or use of other drugs (even if those are their own prescription drugs) can render a person incapable of giving consent. Alcohol, sometimes drugs, and even a combination of the two is often used as a weapon to target individuals ….and is used by perpetrators, to excuse their own actions. This is not excusable.” (Robinson, C. – 2021)

Additionally, while all states have their own specific laws – here in Michigan….the Criminal Sexual Conduct laws apply to a perpetrator regardless of whether or not they were drinking. It is important to remember that sexual assault is never the survivor’s fault, regardless of whether they may have been intoxicated or not.

The term “sexual assault” means any unwanted, nonconsensual sexual contact of any kind (including kissing) obtained through the use of force, threat of force, intimidation, or coercion.

“Rape is unwanted, non-consensual sexual contact that includes penetration (i.e. vaginal or anal penetration, oral sex, and genital touching) obtained through the use of force, threat of force, intimidation, or coercion. 80% (8 out of 10) of all rapes and sexual assaults are reported to be committed by strangers, which means that most of these crimes are committed by someone the victim knows, is close with or related to”. (according to RAINN).

Now that we discussed all the serious business about Sex, Consent, and being aware of our responsibilities around sex….let’s dispel some myths about disability and sex….

Myths About Disability and Sex

• Disabled people can’t have sex.
• Disabled people must pay for sex.
• Disabled people aren’t sexy.
• Disabled people don’t want or need sex.
• Disabled people only have kinky sex.
• Disabled people only have sex with other disabled people.
• Disabled people can’t have kids.
• Disabled people cannot enjoy or are not interested in sex if they are paralyzed.
• Disabled people shouldn’t have kids because they can pass on their disability.
• If you have sex with a disabled person, you will catch what they’ve got
• Disabled people are a burden on their partners.
• People living with a disability can’t have “real” sex.
• Disabled people need protection, like kids.
• Disabled people have more important things than sex to worry about

• Disabled people are brave and courageous to try sex (no, it’s just adapting to a new lifestyle….this does not make them brave – it makes them humans with sexual needs….like anyone else).
• All persons in wheelchairs, using walkers or canes are chronically ill, frail, or sickly.

Facts About Disability and Sex

• People with disabilities can be sexual and enjoy sex.
• Some people who use a wheelchair, walker, or can still feel “down there”
• Sex is not just all about each other’s “privates”, it’s about intimacy as well
• People with disabilities can be kinky and sexy.
• Mobility aids can be a fun addition.
• People with a physical disability don’t always just “lie there”.
• Disabled people can have sex and enjoy it.
• Disabled people sometimes choose to pay for sex like people who aren’t disabled.
• Disabled people can enjoy the same sexual experiences as those without disabilities.
• Disabled people can have sexual desires/needs.
• Disabled people can have kids and build families of their own.
• People with disabilities can identify as LGBTQ too.
• All people need to learn about and understand sex.

Conclusion:

There is a silence within society that pervades many areas of disability and sexuality resulting in the views of disabled people being rendered absent or invisible. Ideally this will open at the very least, a dialogue to inform disabled and non-disabled about people’s sexuality after trauma (regardless of how a person identifies themselves) and empower them in the social and sexual choices they make.

A patient’s ability to cope with a change in brain function post-TBI has been shown to be an important factor in recovery and outcome (Anson and Ponsford, 2006). Articles like this make it possible to make it less of a taboo topic and bring more awareness that encourages providers to include a discussion about sexuality as part of the rehabilitation process.

Rehabilitation professionals should provide education on the potential impact of TBI on sexual functioning for both persons with TBI and their spouses/partners, and integrate the assessment of sexual functioning into their clinical assessment, making appropriate referrals for therapy. (Sander AM;Maestas KL;Pappadis)

Yes, sexuality is one of the most complex aspects of life but, the sexual lives of people with disabilities have been disregarded and stigmatized for far too long. We have the ability through education and awareness to remove those stigmas and make sexuality a normal part of conversations, not just with our healthcare providers, but with each other as well.

There is a way to breathe life back into having moments of being “turned on” when you have unexpectedly been “turned off”. It may feel like a betrayal by your body to not cooperate with you the way it used to before your brain injury. It may look different than it used to. It will, I promise, feel different than it used to. However, as time goes on, and healing continues to work its way into new synaptic connections and your body re-routes itself – you may have the opportunity to experience blissful levitations and waves of sporadic pleasure…. even if for just a moment. This creates a feeling of hope and gratitude that the seemingly robotic new form of yourself is still human after all.

Sex and Disability…..the correlation is a powerful necessary talking point. We must remember when dealing with this level of dis-ability as a result of a brain injury or trauma, not to dis…. our abilities. Let’s boldly go where no man….or woman has gone before! We must continue to keep the conversation, exploration, and research going forward to help remove the stigma and normalize the approach to sex after brain injury and trauma.

References:

Abi vs. TBI: What is the difference? Brain Injury Association of America. (2022, October 5). Retrieved from https://www.biausa.org/brain-injury/about-brain-injury/nbiic/what-is-the- difference-between-an-acquired-brain-injury-and-a-traumatic-brain-injury

Addlahka, R., Heidari, S., & Price, J. (2017, July 5). Disability and sexuality: Claiming sexual and reproductive rights. Taylor & Francis Online. Retrieved from https://www.tandfonline.com/doi/full/10.1080/09688080.2017.1336375

Anson, K., and Ponsford, J. (2006). Coping and emotional adjustment following traumatic brain injury. J. Head Trauma Rehabil. 21, 248-259.

Bell, K. R., & Pepping, M. (2001, February 12). Women and traumatic brain injury. Physical medicine and rehabilitation clinics of North America. Retrieved from https://pubmed.ncbi.nlm.nih.gov/11853035/

Bryant, R.A., and Harvey, A.G. (1999). The influence of traumatic brain injury on acute stress disorder and post-traumatic stress disorder following motor vehicle accidents. Brain Inj. 13, 15-22.

Chandrashekar, R. (2005, April). ProQuest | Better Research, Better Learning, better insights. Awareness of deficits and perceptions of quality of life of persons with traumatic brain injury. Retrieved from https://www.proquest.com/publichealth/docview/305429685/E084A8CDB69845AAPQ/2?

accountid=11183

Collins, R., Lanham, R. A., & Sigford, B. J. (2000). Reliability and validity of the Wisconsin HSS Quality of Life Inventory in traumatic brain injury. Journal o f Head Trauma Rehabilitation, 15, 1139-1148.

Kreuter M;Dahllöf AG;Gudjonsson G;Sullivan M;Siösteen A; (n.d.). Sexual adjustment and its predictors after traumatic brain injury. Brain injury. Retrieved April 13, 2023, from https://pubmed.ncbi.nlm.nih.gov/9591141/

Lezak, M. D., & O’Brien, K. P. (1988). Longitudinal study of emotional, social, and physical changes after traumatic brain injury. Journal o f Learning Disabilities, 21, 456.

Maslow, A. H. (1970). Motivation and personality. New York, NY: Harper & Row.

Moreno JA;Arango Lasprilla JC;Gan C;McKerral M; (n.d.). Sexuality after traumatic brain injury: A critical review. NeuroRehabilitation. Retrieved April 13, 2023, from https://pubmed.ncbi.nlm.nih.gov/23422460/

Rape, Abuse & Incest National Network) is the nation’s largest anti-sexual violence organization. (2023). Perpetrators of sexual violence: Statistics. RAINN. Retrieved from https://www.rainn.org/statistics/perpetrators-sexual-violence

Reekum, R. V., Cohen, T., & Wong, J. (2015, January 24). Can traumatic brain injury cause psychiatric disorders? Can Traumatic Brain Injury Cause Psychiatric Disorders? Retrieved from https://neuro.psychiatryonline.org/doi/10.1176/jnp.12.3.316

Robinson, C. (2021, January 9). Sex after brain injury and Trauma. HOPE TBI. Retrieved from https://hopetbi.com/endocrine-changes-due-to-trauma/sex-after-brain-injury-and-trauma/

Robinson, C. (2021, January 9). Menses and sexual changes in women after trauma. HOPE TBI. Retrieved from https://hopetbi.com/traumatic-brain-injury-and-endocrine-changes/menses-

and-sexual-changes-in-women-after-trauma/

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[BLOG POST] 5 Important Brain Injury Recovery Steps – HOPE TBI

February 12, 2021 HOPE TBI

Brain Injury Recovery Steps

Although the vast majority of people recover after a concussion (guess what? a concussion IS a brain injury)…….how quickly they improve, rehabilitate, and return to their daily activities depends on many factors. These factors include how severe their concussion was, their age, how healthy they were before the concussion, how they take care of themselves after the injury, and the resources provided to them regarding their aftercare/recovery process (this means being provided with proper directions, follow up, and educational information by good providers who know what they are doing).

Okay, we say “good providers”. I do want to say that brain science is changing and evolving on a daily basis. It may not be possible for your provider to know all the latest and greatest developments regarding brain injury recovery, so don’t be too hard on them. It is also difficult for the rehabilitation team of providers to know exactly how long a recovery will take, especially at the beginning. This is why it is called “practicing medicine” – not everything is certain or known. The more you know, the more you realize that once you’ve seen one brain injury you’ve seen one brain injury. This means that all brain injuries, and healing abilities from those brain injuries are different (even if they share similar symptomology). A “good provider” would be someone who advocates for their patient, or defers their patient to a provider with specialized training, or who acts as an active listener and guide through the recovery process (even if that means being willing to learn about new scientific breakthroughs and keeping up on their skills, and knowledge base around what they are treating you for). Is that clear as mud? LOL

Do not compare your concussion (brain injury) symptoms and recovery to that of someone else or even to any previous concussions you may have sustained. Each persons injury is different, and the symptoms of each brain injury(even when happening to the same person) may be different and require a different rehabilitation time as well.

It has been established time and time again that recovery is usually fastest in the early weeks and months after brain injury. In the first few weeks after a brain injury, swelling, bleeding or changes in brain chemistry and physiological aspects of the brain are often affected, and affect the function of healthy brain tissue. The fastest improvement usually happens in about the first six months after injury. During this time, the injured person will likely show a vast array of improvement and may even seem steadily be getting better. The person continues to improve between six months and two years after injury, but this varies greatly for different people and may not happen as fast as the first six months. It is important to note though that while improvements slow down substantially after two years….additional healing and progress may still occur many years after injury. Also the opposite is true as well. A person who appears to be recovered or rehabilitated may not experience affects or manifestation of their injury until years later.

There are some poignant things to keep in mind regarding recovery from a brain injury.

• If you suffered from anxiety or depression before your head injury, it may make it harder to adjust to the symptoms of a concussion (brain injury)
• If you already had a medical condition at the time of your concussion (such as chronic headaches or chronic pain), it may take longer for you to recover
• Receiving another concussion before the brain has healed can result in brain swelling, exacerbated symptoms, permanent brain damage, coma, or death – especially in our youth. You should therefore avoid activities that could cause you to jolt, bump, hurt, or cause a blow to be made to your head.
• If you are a woman (female) it may take you longer to recover and you may have more severe symptoms that your male counterparts.
• Numerous Concussions (brain injuries) over time may cause you to have ongoing serious long-term problems, including chronic memory challenges, difficulty with concentration, persistent headaches, and occasionally, diminished fine motor/physical skills (such as keeping the ability to stay balanced or walk in a straight line).

After reading all this, the question presents itself as,

“Great! Then what things CAN I do to improve my rehabilitation process?”

After all, that’s why you are here to see what that burning question will reveal, right?!?!

Neuro Optometry

• 1. Vision Testing –
  • I don’t mean like your typical eye doctor or optometrist/ophthalmologist that you would see to get your vision tested for glasses. or your glasses prescription adjusted. They don’t have the specialized training for the help you may need. I am talking about seeing a Neuro-Ophthalmologist/Optometrist (yes there is a difference). A Neuro Optometrist is trained to diagnose and treat neurological conditions that negatively impact the visual system. A Neuro-Ophthalmologist is a medical doctor that specializes in the diagnosis and treatment/rehabilitation of neurological conditions adversely affecting the visual system and specializes in neurology AND ophthalmology.
  • They specialize in visual problems that relate to the nervous system (brain injury, stroke, Parkinson’s disease, multiple sclerosis, and diabetic neuropathy). They help patients rehabilitate their vision with specific visual exercises/eye-training exercises that rewire the brain (neuroplasticity). These exercises can be done in the office during a scheduled appointment or at home with the aim being to reduce symptoms and promote visual recovery. These exercises are designed to improve balance, gait, visual information processing, cognitive skills, visual memory, motor skills, double vision, tracking/scanning problems, inability to focus, loss of central vison, strabismus (eye turning), convergence insufficiency, visual field loss, issues with depth perception, etc.
  • They may also, for some patients, prescribe specific optical lenses called prisms (prism glasses)
  • The treatment from this may last weeks, months, and for some patients – years.
  • See additional information about VISION THERAPY.

Auditory Testing

• 2. Auditory Testing (hearing tests) –
  • Hearing issues are often overlooked in polytrauma patients because of other visible life threatening injuries that often take medical precedence/priority. However, hearing loss may mask or confuse getting a correct diagnosis for other injuries. Some patients have been diagnosed as being unresponsive or uncooperative when it was their hearing that was affected. Issues with the ear can result in problems related to balance, hearing loss, dizziness, vertigo ( the most common vertigo being benign paroxysmal positional vertigo), tinnitus (ringing in the ear), chronic nausea, and headaches. While some of these changes are reversible, others are not. This is the importance of getting auditory testing completed as soon as possible after a head injury.
  • Dizziness is believed to occur in 40-60% of people with traumatic brain injuries. The ear is also the organ that is the most susceptible to blast exposures. The extent of ear damage from a blast depends on a multitude of factors (size of blast, environment, distance from blast, orientation of ear canal to the blast, open or closed area during blast). The most common injury from a blast is a ruptured eardrum (tympanic membrane). There are also cases of traumatically induced Meniere’s Disease.
  • Hearing loss as a result of brain injury causes damage to the inner ear or because there is damage to the brain that produces sound. Auditory problems could be mistake for signs of cognitive deficits attributed directly to a brain injury. Hearing loss also exacerbate the social, emotional, and cognitive affects of the brain injury. It is possible to have cognitive affects related to brain injury AND loss of hearing at the same time.
  • Auditory symptoms may include difficulty understanding speech, especially when there is background noise; difficulty locating sounds (knowing where the sounds are coming from); hyperacusis (extreme sensitivity to sounds); tinnitus (ringing in the ears with no external source of the sound); conductive or sensorineural hearing loss ( damage either to the tiny hair cells in your inner ear – known as stereocilia, or to the nerve pathways that lead from your inner ear to the brain); distorted hearing, etc.
• 3. Speech Therapy –
  • Brain injuries can cause speech, language, thinking, and swallowing problems. Speech therapists treat all these conditions
  • Types of issues treated are dysarthria (when the muscles you use for speech are weak or you have difficulty controlling them causing slurred or slowed speech that can be difficult to understand), aphasia (impairment of language, affecting the production or comprehension of speech and the ability to read or write), improving cognitive communication skills, and improving memory
  • Goals in treatment by a Speech Language Pathologist (SLP)/speech therapist is to help the person speak more clearly; express thoughts more effectively; improve problem-solving, planning, and organization skills; improve speech to make it clearer; reading comprehension skills; improvement of memory using various tools (calendars, notebooks, to-do lists, post-it notes, planner, white boards, etc); learn ways to swallow safely; work on social skills through reading and social cues, etc.
• 4. SPECT CT –
  • CT and MRI scans provide detailed information on the anatomical structure of the brain. Brain SPECT imaging reveals the function of the brain by measuring blood flow. 
  • Functional brain imaging is not considered a stand-alone diagnostic tool.   While there are varying levels of acceptance among the neurological and psychiatric conditions, the science and technology have been research for decades and there are hundreds of published research studies utilizing SPECT for the evaluation of the various conditions.
  • See our article – SPECT CT
• 5. Rest –
  • Rest and proper sleep is very important after a concussion because it helps the brain to heal. Ignoring their symptoms and trying to “tough it out” often makes symptoms worse.  Physical and cognitive rest is often recommended, however this varies greatly depending on the health of the brain prior to the injury, as well as the force sustained.
  • These activities, patients are advised by healthcare providers to rest from after a brain injury include: reading, using a computer, watching television, playing video games, or working on school assignments. For many people, physical and mental rest until symptoms subside is the only treatment needed for a concussion or other head injury.
  •  During the first 24 hours, the brain needs as much rest as possible, including minimizing mental, and physical stimulation.
  • After 24 hours, if the injured is symptom-free, the injured person may begin the “relative rest” progressive protocol. Relative rest refers to avoiding any mental or physical activity that provokes the concussion-related symptom (for example if they participate in a physical activity and it increases symptoms, then stop that particular activity)
  • Each day a person can add more mental and physical exertion, as long as their activities don’t provoke any concussion symptoms. It is advised to avoid any strenuous exercise for a week or so. If you want to keep exercising, try to keep it light. If you’re a runner, for example, try walking. It’s also best to avoid any heavy lifting for a week. Moderate activity over the long term helps reduce effects of depression, feelings of isolation,
  • Regardless of the severity of your concussion (brain injury), you should be symptom-free before returning to normal activity, and your condition should be carefully monitored by your doctors.

“NEVER GIVE UP ON A HEAD INJURED PATIENT. – Recovery Occurs for the rest of a person’s life. Give people the type of treatment that they deserve. ~David Hovda, PhD“

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