Brain injury support groups

SUPPORT GROUPS

Click PINK title of each group to reach that group on Facebook.

WOMENS’ GROUP This group is for woman over age 25 who are suffering a brain injury (aka mTBI, TBI, or concussion) and/or Post Concussion Syndrome which is now recognized as symptoms lasting over a month. Topics will address women’s issues with TBI including employment, spouses, and/or being a parent. We also have a group for women under age 25 where school and college age issues will be addressed. Pick the group best for you.

YOUNG WOMEN’S GROUP (under 25) This group is for woman under age 25 who are suffering a brain injury (aka mTBI, TBI, or concussion) and/or Post Concussion Syndrome which is now recognized as symptoms lasting over a month. Topics will address young women’s issues with TBI including school and college age issues.

SOBER SISTERS (New)

PINK CANADA This group is for woman who are suffering a brain injury (aka mTBI, TBI, or concussion) and/or Post Concussion Syndrome and live in Canada.

CAREGIVERS’ AND PARENTS’ GROUP This group is for caregivers and/or parents who is caring for a woman or a girl suffering a brain injury (which can be called mTBI, TBI, or concussion) and/or Post Concussion Syndrome (which is now recognized as symptoms lasting over a month).

PINK MILITARY GROUP for women who are active military or veterans

PINK MEDICAL PROFESSIONALS This group is for professionals interested in Female Brain Injury and interested in having a forum to ask questions and share research. There are a number of female medical professionals/first responders in the group who also have brain injurie. The definition of professionals is broad to include medical professionals, athletic trainers, researchers, graduate students, first responders, etc.

We are building a supportive online community and working towards presenting educational webinars; and hopefully this year, hosting retreats so we can meet in person.
NOTE TO NEWLY DIAGNOSED WOMEN : If you are within a month of your injury, you may want to wait to join if you need our support in a few weeks. A majority women do heal within a month and do not develop PCS. This group’s mission is to support women with longer recoveries and not meant to add any worry or stress to newly diagnosed women who may heal within a shorter time period (around a month). Come back if you need us and we will be here for you.

As part of its work on the National Disability Insurance Scheme’s Information, Linkages and Capacity Building , referred to in the first article of BIA’s March 2017 Newsletter, Brain Injury Australia is keen to hear from the potentially many thousands of Australians with experience of post-concussion syndrome/ “mild” traumatic brain injury.

Over 20,000 Australians are hospitalised with a traumatic brain injury (TBI) each year. As many as 85 per cent are diagnosed with a “mild” TBI and the majority of them – again, around 85 per cent – will make a full recovery within 3 to 6 months. Brain Injury Australia estimates that every year in Australia more than 3,000 people are hospitalised with concussion, just from playing sport. Triple that number will not seek medical attention. And as many as ten times that number will not even report their concussion to teammates, coaches or family for fear of being removed from play. Or, they do not even know they have been concussed (as many as nine out of ten people hospitalised with concussion don’t recognise the injury).

In around 90 per cent of adult concussions, symptoms will completely resolve within 10 to 14 days of injury. That still leaves a large number of people for whom ongoing post-concussive symptoms – including headache, dizziness, fatigue, blurred or double vision, sensitivity to noise and/or light, ringing in the ears, poor balance, reduced thinking speed, concentration and memory problems, irritability, anxiety and depression – can result in significant, and ongoing, disability affecting educational, occupational, social and emotional functioning.

Many people with post-concussion syndrome/“mild” traumatic brain injury “suffer in silence”, often not associating their symptoms with head injury. Hospitals are poor at following-up with patients, and Australia’s General Practitioners are often lost in what to do with these people. As part of its work on the National Disability Insurance Scheme’s Information, Linkages and Capacity Building, Brain Injury Australia is keen to hear from anyone with experience of post-concussion syndrome/“mild” traumatic brain injury, to help us build a service and support system that will meet your needs. Please contact me, Nick Rushworth – the Executive Officer of Brain Injury Australia – via email ([email protected]) or phone (02) 9808 9390, 1-800 BRAIN1 (1-800 272 461)

It’s easy (and common) to feel as though you’re the only one who knows what it’s like to deal with a concussion. It’s common to feel alone in that regard. The good news is, you’re not! There are support groups, online forums, and 24/7 help lines available. Read below to find the many options available to you and your family.

With a little support, you can bloom even under the most trying of circumstances.

A while back, I spent a chunk of time to look up the resources available and create a reference. I put it in a Google Docs spreadsheet that is available to everyone. The link is below: the Big List. Also, I’ve included several help line listings in case you’re in a crisis situation or need assistance right away. These items are also in the Big List.

The Big List

This is a huge spreadsheet that lists a variety of resources, including:

  • Support groups
  • Online forums
  • 24/7 help lines
  • Domestic violence resources
  • Veterans support
  • Professional athlete support

The Big List: Support Groups, Online Forums, and 24/7 Help Lines

In Crisis?

If you feel that you need assistance right now, please visit the National Suicide Prevention Lifeline website or call this number:

Veterans Assistance

The Veterans Crisis Line provides crisis assistance to veterans and family alike. Be sure and take a look at the many resources available. Two options for assistance are available:

Call: 1-800-273-8255 and press 1

Text: send a message to 838255

Domestic Violence and Assault

Assaults can result in a concussion or TBI. If you receive such an injury, please seek medical assistance. Remember that a concussion can change over a period of several days. So even if you’re Ok in the first 24 hours, it might not be the case over the next 48 hours. Symptoms could worsen. For information about what to look for and when to seek medical assistance, see the CDC information about concussion signs, symptoms, and when to seek medical assistance.

Helplines and Resources

National Domestic Violence Hotline
1-800-799-SAFE (1-800-799-7233)

National Sexual Assault Hotline
1-800-656-HOPE (1-800-656-4673)

Sexual Assault Support for the DoD Community
1-877-995-5247

Post-concussion Syndrome

An excellent review of diagnostic issues related to mild traumatic brain injury (mTBI) and post-concussion syndrome (PCS) can be found in McCrea (2008). He clearly breaks down the various diagnostic systems that are currently used for head injuries.

The American Congress of Rehabilitation Medicine (ACRM) developed one of the most accepted diagnostic criteria for mild traumatic brain injury (mTBI). The criterion states that a person must have experienced a traumatically induced disruption of brain function manifested by at least one of the following: 1. Any period of loss of consciousness 2. Any loss of memory for events immediately before or after the accident 3. Any alteration in mental state at the time of the accident, for example, being dazed, disoriented, or confused 4. Focal neurological deficits that may or may not be transient.

For a diagnosis of mild TBI, there were three additional ACRM criteria regarding the level of severity: 1. Loss of consciousness (LOC) cannot exceed 30 minutes. 2. After 30 minutes the Glasgow Coma Scale (GCS) score must range between 13 and 15. 3. Posttraumatic amnesia cannot be greater than 24 hours.

From a clinical perspective, the ACRM criteria appear to be sound. In contrast, the International Classification of Diseases, 10th Edition (ICD-10) criteria for post-concussion syndrome, in my opinion, misses the mark by its final criterion, which calls into question the validity of the patient’s complaints. It states that there is a preoccupation with symptoms of headache, dizziness, malaise, fatigue, noise intolerance, irritability, depression, anxiety, emotional lability, subjective concentration, memory, or intellectual difficulties without neuropsychological evidence of marked impairment, insomnia, and reduced alcohol tolerance. This specific final criterion that I believe is misguided states, “Preoccupation with above symptoms and fear of brain damage with hypochondriacal concern and adoption of the sick role” (McCrea, 2008).

In my practice patients who have experienced brain trauma typically have most of the above symptoms, however, there usually is neuropsychological evidence of marked impairment. While it is possible that there may be hypochondriacal concerns, this is not common. Instead, these symptoms are entirely consistent with posttraumatic brain injury presentation in many car accidents and blast exposure patients I see.

From what we are learning about the possibility of pituitary and other endocrine dysfunction and the role of neuroinflammation from brain trauma, it may be doing a great disservice to patients to describe injured people’s concerns as hypochondriacal when in fact they may have hypopituitarism or another hormonal dysregulation. Hormonal dysregulation and neuroinflammatory responses are known to produce many of the symptoms reported in the ICD-10 and which are common to TBI patients. Research studies are increasingly showing the relationship between blast concussion and a high frequency of pituitary dysfunction (C. Wilkinson, et. al., 2012). See also the work of Gordon (2017, 2016).

In a personal communication, Dr. Gordon reminded me that neuroinflammation as the precipitating factor to global dysfunction of brain physiology needs to be highlighted. This is because studies on Cytokines (inflammatory proteins) are showing the association with all neuropsychiatric conditions ascribed to TBI/PTSD. He cautioned that treating pituitary dysfunction in isolation may not address the central problem which is neuroinflammation. Gordon further indicated that some hormonal deficiencies may be due to disruption of the enzymatic systems that produce hormones without there being damage to the pituitary.

I do not know what if any modifications will be in the ICD-11 edition slated to be presented at the World Health Assembly in May 2019 for adoption by member states, but I hope this last criterion is modified as it does a disservice to TBI patients.

Minor head injury and concussion

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  • Local concussion support groups

    If you’ve ever had a concussion, you know how difficult life can be. From the never-ending headaches, to the nausea and confusion, living with post-concussion symptoms can be an absolute nightmare, but there are ways that can help. If you feel you have tried almost everything to help with your brain injuries, you might meet someone through a concussion support group who has a new way to help.

    Here in Sacramento, the Head Trauma Support Project offers several different support groups for all sorts of concussions and brain injuries.

    One of the classes they offer is called the Survivor Support Group. This group meets every Thursday evening from 6:30-8:30 and is for those recovering from moderate-to-severe brain injuries. In these meetings, support is offered though discussions, social interactions and special activities. Most people who participate in these meetings usually require assistance at home.

    Another support group that’s held is for those who have mild difficulty in their everyday lives. The group is called the Making the Best of It and meets twice a month. In this support group, members are offered education and methods on how to continue with their brain injuries. If you would like to attend, please visit their for more information. It is also asked that participants be interviewed over the phone before attending.

    For those family members of someone who is going through a traumatic brain injury, it can be tough to understand what that person is dealing with. Through the project’s Adult Children and Siblings of Survivors Support Group, you can meet with other people who understand what your family is going through. Meeting every third Thursday of the month, members are encouraged to engage in conversation and sharing their experiences. The group is moderated by a social worker and is free to anyone that needs the help.

    These meetings all take place at the Easter Seals Society in Sacramento. If you would like to learn more information, visit Head Trauma Support Project website.

    Copyright 2017 KXTV

    Traumatic Brain Injury

    • Physiatrists: Doctors who are experts in rehabilitation medicine who typically oversee the rehabilitation process.
    • Neurologists: Doctors who are trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles.
    • Occupational, physical, speech, and language therapists: Therapists who help the person regain thinking skills, communication skills, physical abilities, and behavioral skills.
    • Neuropsychologists: Specialized psychologists who focus on thinking skills and behavior problems.
    • Vocational rehabilitation experts: Employment coaches who help with regaining job skills.

    It is important to remember that rehabilitation may last years, and that your loved one will benefit from the ability to receive rehabilitation services throughout this time. Appropriate programs and treatments will also change as your family member’s needs change.

    A variety of treatment and rehabilitation programs may help your loved one. Some of the different types of rehabilitation facilities include:

    • Acute rehabilitation: An intensive rehabilitation program.
    • Coma treatment centers: Provide coma-specific medical care.
    • Transitional living programs: Nonmedical residential programs that teach skills for community living.
    • Long-term care and supervised living programs: Residential facilities that provide care and
      rehabilitation to people with TBI who are not able to live independently.
    • Behavior management programs: Typically community-based (i.e., not residential) programs that teach self-control and appropriate social behaviors.
    • Day treatment programs: Provide rehabilitation during the day so the person can return home at night.

    Prevention

    TBIs can be life altering, yet many serious injuries are preventable if the necessary precautions are taken. The following are tips for minimizing the risk of sustaining a TBI:

    Drivers and passengers should always:

    • Wear lap belts and shoulder harnesses.
    • Use properly installed infant and child safety seats. A representative of your local police department or highway patrol can show you the proper method of installation.
    • Avoiding drinking and driving, or driving under the influence of drugs or medeications.
    • Use helmets for motorcycle and bicycle riding and other recreational sports.

    To help prevent falls, individuals should:

    • Use the rails on stairways.
    • Install adequate lighting, especially on stairs for people with poor vision or who have difficulty walking.
    • Place bars on windows to prevent children from falling.
    • Do not place obstacles in walking pathways.

    Research has shown that approximately 85% of head injuries from bicycle accidents can be prevented with the use of helmets.

    Caregiving

    When someone suffers a traumatic brain injury (TBI), the entire family is affected. Studies show that caregivers of people who have suffered a brain injury may experience feelings of burden, distress, anxiety, anger, and depression. If you are caring for a partner, spouse, child, relative, or close friend with TBI, it is important to recognize how stressful this situation can be and to seek support services.

    Services that may be most helpful to you include in-home assistance (home health aides or personal care assistants), respite care to provide breaks from caregiving, brain injury support groups, and ongoing or short-term counseling for caregivers to adjust to the changes that have come as a result of the injury. You also may need to ask your support system of family, friends, and community members for help with your loved one’s care, so that you don’t get burned out. (See Family Caregiver Alliance’s fact sheet: Taking Care of YOU: Self-Care for Family Caregivers for additional tips on taking care of yourself.)

    In your role as a caregiver, you will probably find that it can be difficult to find appropriate and adequate services for your loved one. It is important to know that you will most likely need to be persistent in your search for assistance. You should use your network of family and friends, as well as professionals, to get tips about available resources.

    Veteran Affairs Response to TBI

    Due to the high incidence of TBI in the military field, Veteran Affairs (VA) and other sectors of the US military health system have become active in addressing the issues surrounding TBI.

    Active duty and reserve service members are at an increased risk of sustaining a TBI compared to their civilian peers. This is a result of several factors, including the specific demographics of the military; in general, young men between the ages of 18 to 24 are at the greatest risk for TBI. This is coupled with an increased risk of being deployed to areas where they are at risk for experiencing blast exposures, and the potential danger of even the most common operational and training activities that are common in the military.

    Research conducted by the Defense and Veterans Brain Center (DVBIC) in 2005 found that blasts in combination with other mechanisms are a leading cause of TBI for active duty military personnel in war zones. The DVBIC also found that service members with previous TBIs had more symptoms in the first three months after a subsequent injury, compared to those with their first TBI, highlighting the significance and implications for treatment of multiple TBIs.

    The VA has implemented an integrated nationwide system of care for veterans and active duty service members recovering from TBI and polytrauma. This system is designed to provide care for persons with TBI as an isolated condition, or in the context of polytrauma or other comorbidities. It consists of more than 100 VA medical centers, each offering specialized rehabilitation care by an interdisciplinary team.

    Various steps have been taken to improve identification and treatment:

    • In 2007, the VA initiated a TBI screening for all veterans.
    • Veterans with a positive TBI screen are referred for a comprehensive evaluation with specialty providers who determine a definitive diagnosis.
    • An individualized Rehabilitation and Reintegration Treatment Plan of Care is developed for those Veterans that need ongoing rehabilitation services.

    In late 2012, the Department of Veterans Affairs and the Department of Defense announced that they were investing more than $100 million in research to improve diagnosis and treatment of mild TBI and post-traumatic stress disorder (PTSD).

    Useful Resources and Services for Families Affected by TBI

    National Disability Rights Network Protection and Advocacy for Individuals with Disabilities
    Protection and Advocacy (P&A) System and Client Assistance Program (CAP)
    This nationwide network of congressionally mandated disability rights agencies provides various services to people with disabilities, including TBI. P&A agencies provide information and referral services and help people with disabilities find solutions to problems involving discrimination and employment, education, health care and transportation, personal decision making, and Social Security disability benefits. These agencies also provide individual and family advocacy. CAP agencies help clients seeking vocational rehabilitation. For more information on P&A and CAP programs, see the National Disability Rights Network webiste, www.ndrn.org.

    Traumatic Brain Injury Model Systems
    Funded through the National Institute on Disability and Rehabilitation Research, the TBI Model Systems consist of 16 TBI treatment centers throughout the US. The TBI Model Systems have extensive experience treating people with TBI and are linked to well-established medical centers that provide high quality trauma care from the onset of head injury through the rehabilitation process. For more information on the TBI Model Systems, see www.tbindsc.org.

    Brain Injury Association of America (BIAA) Chartered State Affiliates
    BIAA is a national program with a network of more than 40 chartered state affiliates, as well as hundreds of local chapters providing information, education, and support to individuals, families, and professionals affected by brain injury. To locate your state’s TBI programs that can be of assistance, see the Brain Injury Association of America’s online listing of chartered state affiliates at www.biausa.org/state-affiliates.

    Social Security Disability Insurance (SSDI) & Supplemental Security Income (SSI)
    It is possible that your loved one may be entitled to SSDI and/or SSI. SSDI and SSI eligibility is dependent on a number of factors including the severity of the disability and what assets and income your loved one has. You should contact the Social Security Administration to find out more about these programs and whether your loved one will qualify for these benefits. For more information on SSDI and SSI, see www.ssa.gov.

    Centers for Independent Living (CIL)
    Some families have found that it is important to encourage their loved one with a TBI to continually learn skills that can allow them to live as independently as possible. CILs exist nationwide to help people with disabilities live independently in the community and may have resources to help your loved one reach a goal of living alone. CIL services include advocacy, peer counseling, case management, personal assistance and counseling, information and referral, and independent living skills development. For more information on the national CIL system, see www.virtualcil.net/cils.

    Resources

    Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s, and other debilitating health conditions that strike adults.

    FCA Fact and Tip Sheets

    A listing of all facts and tips is available online at www.caregiver.org/fact-sheets.

    Taking Care of YOU: Self-Care for Family Caregivers
    Coping with Behavior Problems After Head Injury

    Other Organizations and Links

    Brain Injury Association of America

    A national advocacy and awareness organization that develops and distributes educational information about brain injury and resources, legal rights, and services. The Association provides a variety of information regarding brain injury and has state affiliates throughout the US.

    Defense and Veterans Brain Injury Center
    dvbic.dcoe.mil

    Serves active duty military, their dependents, and veterans with traumatic brain injury. Offers evaluation, treatment, follow-up care, educational materials and research.

    Brainline.org

    Brain Injury Resource Center

    Recommended Reading

    Brainline.org. Research Update: Traumatic Brain Injury. www.brainline.org

    Center for Disease Control and Protection.Traumatic Brain Injury. www.cdc.gov

    National Institute of Neurological Disorders and Stroke. NINDS Traumatic Brain Injury Information Page. www.ninds.nih.gov

    Support groups are wonderful opportunities for people with similar life experiences to meet each other, share their stories and encourage one another. Group members benefit from learning coping strategies and everyday tips for dealing with various experiences. For people with traumatic brain injury (TBI), support groups offer informal opportunities for understanding a shared experience that greatly changed their lives, often within a few seconds’ or minutes’ time. They are left with physical, cognitive and emotional outcomes that impact their relationships, work and independence, often leading to loneliness and isolation.

    As noted by the Brain Injury Association of America, more than 2.5 million adults and children experience a TBI in the United States each year, and support groups play a vital role in their continued recovery and re-entry to everyday life. A TBI dramatically interrupts life for these individuals and their families. Extended hospitalizations for physical recovery and long-term cognitive training for rewiring the brain alter all aspects of life, with treatment continuing for up to a year after the incident.

    Effects of TBI

    The effects of TBI are varied and highly individualized. The extent of the physical and psychosocial impacts depends on the type of injury (closed, open or acquired) and the severity of the injury. Thus, depending on the area of injury, people with TBI may deal with deficits in memory, executive functioning issues and poor judgment.

    Frontal lobe injuries may lead to changes in mood and personality, difficulty making decisions and difficulty with expressive language, all of which are executive functions.

    Injuries to the parietal lobe, which helps with perceptual abilities, may lead to difficulties naming words (anomia), finding words (agraphia) or reading (alexia), as well as problems with perceptual abilities that integrate sensory information. The ability to distinguish right from left may also be affected.

    Damage to the temporal lobe may involve hearing loss, Wernicke’s aphasia (difficulty grasping the meaning of spoken language), problems categorizing information such as objects and short-term memory problems.

    Brain injuries to the occipital lobe, which controls our vision, may lead to visual field problems, distorted perception and difficulty with reading, writing and word recognition.

    Injury to the base of the skull at the site of the cerebellum creates difficulties with balance, equilibrium and coordination, as well as slurred speech.

    Acute and long-term rehabilitation from TBI involves physical, occupational and speech therapy, as well as cognitive neuropsychological evaluations. As individuals recover from the physical damage, it is important for counselors to be a part of the rehabilitation team to manage adjustment to the physical injuries, acute stress and cognitive disability. In addition, the psychosocial aspects of TBI are very disruptive. They can be long-lasting as these individuals and their families begin to adapt to everyday life. Counselors are needed to provide individual and family counseling, as well as psychoeducation about TBI and recovery.

    Psychosocial aspects of TBI

    The psychosocial aspects of TBI are also related to the area of brain damage. People with frontal lobe damage may have difficulty making decisions, maintaining attention to tasks and controlling impulsive behaviors.

    When the parietal lobe is damaged, difficulties occur with eye-hand coordination, reading, math and writing.

    Temporal lobe damage interferes with communication skills, learning and memory. Learning difficulties due to recognition and visual field problems may result from occipital lobe damage.

    In assisting people with TBI and their families, it is important to understand how psychosocial areas of life are affected and how these areas impact the potential return to daily living. For example, an individual may not return to his or her pre-injury abilities and can experience problems returning to work or school. Difficulties with problem-solving, understanding others’ emotions and social cues, or just being able to carry on a conversation may isolate the person with the TBI and increase his or her feelings of loss. Other areas of life that may be affected include the ability to drive, participate in sports and exercise, which can create deficits in the person’s social life. Problems with executive functioning can lead to challenges making sound decisions. Because safety is a major concern, the individual with a TBI may need to be monitored consistently by family, which can lead to tensions and other problems.

    These are all skills that most of us take for granted or complete without much planning and forethought. But for individuals with TBI, family and personal relationships can grow strained, and the ability to build new relationships is impacted. The person’s independence and self-esteem suffer greatly.

    Lessons learned

    As a rehabilitation counselor for an acute inpatient rehabilitation program, I work with individuals who have TBIs, as well as their families, to provide counseling for stabilization, adjustment to disability and assistance with developing coping strategies. Providing support to these patients and their families as they begin realizing the extent of the brain damage and start dealing with feelings of loss is a crucial part of recovery.

    For three years, I facilitated a monthly outpatient support group for people with TBI and found the experience fascinating. Hearing stories of people having car accidents, motorcycle accidents, work accidents, anoxia (deprivation of oxygen) and other unexpected accidents was difficult and often heart-wrenching. Yet these shared experiences forged a bond among group members that was undeniable and very moving.

    They shared what it was like to not remember exactly what had happened to cause their brain injury. They shared what it was like to lose track of time and details and to have to trust the information told to them by health care providers, family members and friends. The fact that they each had “lost a period of time” from their lives and hadn’t been the same since seemed to build a sense of trust and caring among the group.

    I soon learned that as a rehabilitation counselor, I could understand the medical, cognitive, vocational and emotional results of their injuries, but I couldn’t fully appreciate the daily psychosocial impact that their injuries had taken and continued to take on their lives.

    The time since being injured varied among the support group members — anywhere from two years to 18 years. Regardless, the psychosocial effects they experienced were extensive. They talked about their school and work being interrupted, about having to settle for less challenging options or not being able to pursue their goals at all. Some shared tales of broken marriages and relationships, of losing custody of their children.

    Others talked about losing their sense of independence because they had to rely on their families for almost everything. Some could no longer live at home due to the need for constant supervision, so they had to learn to live in group homes. Pursuing sports or other recreation choices was hard because of physical limitations. Another significant loss was no longer being able to drive and depending on others for transportation. The lack of money for “extras” was particularly difficult for those group members with children.

    Holidays posed another challenge for these support group members because of sensory issues with noise, lights and too many people talking at once. Others discussed experiencing the stigma of having a TBI and being considered “different now” by family members and friends. This was felt particularly strongly at social gatherings, where family and friends made infrequent contact with them. Isolation and loneliness were prevalent themes in their stories. Depression, anxiety and low self-esteem made daily life a struggle.

    Research conducted by Jesse Fann and colleagues in 2009 and by Annemieke Scholten and colleagues in 2016 and subsequently published in the Journal of Neurotrauma shows that the rate of depression during the first year after a TBI is 50 percent. The rate is close to 60 percent within seven years after the TBI. So, it is crucial for counselors to have this awareness of serious mental health issues in people with TBI to properly assist them and their families in seeking appropriate treatment.

    Members of the support group I facilitated discussed that being on medication was difficult due to the side effects and to the cost of the medication if they had little or no insurance. They felt that cognitive retraining programs and daily psychosocial programs modeled after those for people with serious and persistent mental illness helped tremendously. The aspects of these programs that they reported helping most were receiving cognitive behavior therapy and continuing to learn more about TBI. The psychosocial programs were highly regarded because of the increase in social activities, access to vocational rehabilitation and supported employment services, and integration back into the community.

    At times, the support group was difficult to manage because of the cognitive and emotional deficits with which the individuals dealt. However, the members had their unique ways of helping each other and redirecting the conversations. It was very clear that they respected one another.

    Our time together as a support group transformed us into a unique family, particularly because the group remained fairly constant in its membership. The members trusted each other and understood the struggles being discussed. However, they also felt safe in correcting each other and being bluntly honest (which people with TBI are). We did have some new members join along the way. They were welcomed with open arms, and veteran members exhibited an unabashed eagerness to help. It was always interesting to hear about the creative accommodations that our members developed to live life each day and how the professionals in their lives assisted them.

    As the group grew stronger, the members felt it was important for me to record what they wanted others to know about TBI and people with TBI. Their primary messages were:

    • “Conversation and expressing one’s self can be difficult.”
    • “People with TBI may not like the same things as they previously did, so don’t force us.”
    • “Tasks may take longer for people with TBI, so wait for us.”
    • “Social situations can overload people with TBI.”
    • “TBI affects everyone around the person.”
    • “Those with TBI are still the same people they were before.”

    During my time with the support group, I learned many lessons. First of all, I learned that life after a TBI requires constant adjustments that must be made each day to be productive and involved. I also came to understand that time does offer healing when abundant respect and empathy are present. But most important, I learned about living life as it happens from a wonderful group of resilient individuals.

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    Judy A. Schmidt is a clinical assistant professor in the clinical rehabilitation and mental health counseling program in the Department of Allied Health Sciences, and an adjunct clinical assistant professor in the Department of Physical Medicine and Rehabilitation, School of Medicine, at the University of North Carolina (UNC) at Chapel Hill. She is the rehabilitation counselor for the acute inpatient rehabilitation unit for UNC Hospital, where she provides counseling services to patients and their families after traumatic brain injury, stroke, spinal cord injury and other neurological trauma. Contact her at [email protected]

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    Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

    Post-Concussion Syndrome, or PCS, is the persistence of concussion symptoms beyond the normal course of recovery. The majority of concussion symptoms will resolve within about two weeks, and with proper recovery almost all dissipate within a month. In cases where symptoms last longer than one or two months, doctors may diagnose Post-Concussion Syndrome. Patients with PCS can experience concussion-like symptoms at rest or in response to too much physical or cognitive activity, often forcing them to withdraw from their usual physical, professional, and social lives.

    Is PCS normal?

    Post-concussion syndrome is a relatively common complication of concussion recovery. In high school athletes diagnosed with concussion, researchers have estimated approximately 10% will develop PCS, and other estimates of other age groups and populations range from 5 to 30%. While most patients will not suffer from PCS, it is important for PCS sufferers to know they are not alone.

    Risk Factors: Why do some people suffer from PCS, but others don’t?

    While it is difficult to predict who will suffer from PCS, research provides some clues as to who may be at more risk. Demographic variables play a role, with women and older adults being at greater risk than men and younger individuals. In addition to demographic variables, a person’s concussion and medical history can affect PCS risk. Below are risk factors that appear to increase a person’s odds of developing PCS.

    Demographic Risk Factors Medical Risk Factors Injury Risk Factors
    Female sex History of previous concussion Severe impact
    Advanced age History of prolonged recovery Double impact
    History of mood, anxiety, learning or seizure disorder Duration of initial symptoms
    History of migraine headaches Major visual symptoms soon after injury

    Interrupting a life: How serious is Post-Concussion Syndrome?

    Post-Concussion Syndrome can be extremely disruptive to a patient’s life. In addition to having to constantly manage concussion symptoms, which can intensify with normal activity, long-term PCS patients often have to restructure their lives to avoid activities and situations that cause symptoms to worsen. For children, this can mean extended absences from school and removal from sports and extra-curricular activities. In severe cases, it may be necessary for a child to repeat a grade. In adults, PCS can seriously impact a patients’ personal and professional life, interfere with family life, as well as the ability to focus, communicate, and be effective at work.

    Read about coping strategies for living with PCS.

    Are there any treatments for Post-Concussion Syndrome?

    Management of PCS is most often a matter of resting and allowing the brain’s natural recovery process the time to heal the damage caused by a concussion. After a period of rest, doctors may prescribe active therapies to help alleviate symptoms of PCS, but there is no single treatment that is effective in all cases.

    PCS therapies identify the worst symptoms for an individual patient, and target them with specific therapies to reduce the symptoms or eliminate their cause. These therapies are especially helpful in cases where one or two symptoms simply won’t go away.

    Learn more about PCS Treatments.

    How can I help someone suffering from PCS?

    Patients with PCS often report feeling isolated by their illness, and it is difficult for parents, friends and any outside observers to see how disruptive PCS symptoms can be. This can often lead to observers dismissing or minimizing a patient’s symptoms, which hurts. They hear, “Are you still hurt?” or “Are you sure you’re not faking to get out of school?” PCS is an invisible injury, and many patients often wish they had a more visible injury requiring crutches or a cast so that they would receive more respect.

    Family and friends of a patient suffering from PCS can help by recognizing that PCS is a serious condition, and being understanding and supportive if the patient needs to socialize differently. A person with PCS may no longer be able to handle the noise or crowds of a party, but they still need to spend social time with friends, so offer a movie night or just pay them a visit and talk. Other situations may bring on more severe symptoms, so expect someone with PCS to sometimes remove themselves from a loud, bright, crowded, or otherwise over-stimulating situation. Instead of questioning if their headache is really that bad, a supportive friend will offer encouragement and remind their friend that they’ll be ready to continue their activity when they’re feeling better.

    Learn more about what PCS is like by checking out our Personal Stories page, where sufferers of Post-Concussion Syndrome tell their recovery stories.

    Is Post-Concussion Syndrome the same thing as CTE?

    No. Post-Concussion Syndrome is completely separate from other long-term consequences of brain trauma, such as Chronic Traumatic Encephalopathy (CTE). While symptoms may appear similar, the onset of PCS symptoms by definition follow a concussion. PCS does get better over time and in most cases eventually resolves completely. It is not progressive, and it is not degenerative. You will feel better, especially if you work with an experienced medical professional! to learn more about CTE.

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