Posts Tagged TBI

[WEB SITE] Drinking Alcohol After Brain Injury

Holidays are often a time of parties with alcohol. For many, it’s the season to celebrate with alcohol, to party with the holidays coming! How often have you heard that line – or is it an excuse? But you may have also heard comments from friends and family such as,

“You get angry when you drink.”

“I don’t like how you act when you’ve been drinking.”

“You turn into a different person when you drink.”

Or simply…

“Please don’t drink.”

Drinking alcohol after a brain injury – whether it’s beer, wine, mixed drinks, or hard liquor – often raises questions, comments or accusations along the lines of “Is that wise?” or “Should you be doing that?”

Responses often made are, “It’s calms my nerves.” Or “It helps me fall asleep.” Or It’s not a problem for me.” Or “Don’t make such a big deal out of it.” Or “I can handle it.” Sound familiar?

Talking about alcohol is too often a “hot” topic leading to arguments with name calling and accusations on one side that are met with denials and resistance by the other person. The choice may turn into arguing about it or avoiding talking about it.  Neither approach helps. Statistics tell the real story.

• Up to 2/3 of people with TBI have a history of alcohol abuse or risky drinking. Injuries can occur when people drink too much alcohol.

• Between 1/3 to ½ of people with TBI were injured while drunk.

• After a TBI, about half of survivors stop drinking or cut way back.

There are consequences for survivors – and for their families. Research finds that after a brain injury, drinking alcohol:

• Reduces brain injury recovery
• Increases changes of re-injury
• Magnifies cognitive impairments, and
• Puts the person at risk for emotional problems such as depression.
• For these reasons, abstinence or not drinking, is recommend or, “No use is the best use.”
Not drinking is one way to give the brain a chance to heal.

Alcohol and brain injury can have wide ranging effects including:
Seizures
• A traumatic brain injury increases the risk for developing seizures.
• Alcohol lowers the seizure threshold and may trigger seizures.
• Not drinking can reduce the risk of developing post-traumatic seizures.

Another Brain Injury
• TBI survivors are 3 to 8 times at higher risk for another brain injury.

Mental Functioning
Alcohol…
• Affects memory, mental speed, balance, and thinking.
• May affect survivors more than it did before their injury.
• Magnifies negative effects of brain injury.
• Can have negative mental effects over days to weeks even after drinking stops.

Mood
• Is a depressant.
• Increases risks of depression after brain injury.
• Reduces effectiveness of anti-depressant medications.

Sex
Alcohol…
• Reduces testosterone production in men.
• Reduces sexual desire in men and women.
• Reduces sexual performance in men.
• Reduces sexual satisfaction in both men and women.

Meds
As if all this isn’t enough, consider the potential interaction between alcohol and other drugs and prescription meds.

Don’t mix alcohol and meds.

Alcohol…
• Can diminish or multiply effects of some medications, increasing risks of overdose and death.

Conclusion
We can only give you the facts and information about alcohol and brain injury. The choice is yours.

To see this newsletter on our blog page, just CLICK HERE!

This newsletter features excerpts by Dr. Charles Bombardier from the chapter on “Alcohol and Other Drug Use after Brain Injury.”  If you’d like to explore this topic more, you will find it in the workbook:  Living Life Fully after Brain Injury

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via Brain Injury Journey Bulletin for November!

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[Abstract] Traumatic brain injury: integrated approaches to improve prevention, clinical care, and research – The Lancet Neurology

First page of article

A concerted effort to tackle the global health problem posed by traumatic brain injury (TBI) is long overdue. TBI is a public health challenge of vast, but insufficiently recognised, proportions. Worldwide, more than 50 million people have a TBI each year, and it is estimated that about half the world’s population will have one or more TBIs over their lifetime. TBI is the leading cause of mortality in young adults and a major cause of death and disability across all ages in all countries, with a disproportionate burden of disability and death occurring in low-income and middle-income countries (LMICs).

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via Traumatic brain injury: integrated approaches to improve prevention, clinical care, and research – The Lancet Neurology

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[Abstract] Interventions for managing skeletal muscle spasticity following traumatic brain injury – Cochrane Systematic Review

Abstract

Background

Skeletal muscle spasticity is a major physical complication resulting from traumatic brain injury (TBI), which can lead to muscle contracture, joint stiffness, reduced range of movement, broken skin and pain. Treatments for spasticity include a range of pharmacological and non-pharmacological interventions, often used in combination. Management of spasticity following TBI varies from other clinical populations because of the added complexity of behavioural and cognitive issues associated with TBI.

Objectives

To assess the effects of interventions for managing skeletal muscle spasticity in people with TBI.

Search methods

In June 2017, we searched key databases including the Cochrane Injuries Group Specialised Register, CENTRAL, MEDLINE (Ovid), Embase (Ovid) and others, in addition to clinical trials registries and the reference lists of included studies.

Selection criteria

We included randomised controlled trials (RCTs) and cross-over RCTs evaluating any intervention for the management of spasticity in TBI. Only studies where at least 50% of participants had a TBI (or for whom separate data for participants with TBI were available) were included. The primary outcomes were spasticity and adverse effects. Secondary outcome measures were classified according to the World Health Organization International Classification of Functioning, Disability and Health including body functions (sensory, pain, neuromusculoskeletal and movement-related functions) and activities and participation (general tasks and demands; mobility; self-care; domestic life; major life areas; community, social and civic life).

Data collection and analysis

We used standard methodological procedures expected by Cochrane. Data were synthesised narratively; meta-analysis was precluded due to the paucity and heterogeneity of data.

Main results

We included nine studies in this review which involved 134 participants with TBI. Only five studies reported between-group differences, yielding outcome data for 105 participants with TBI. These five studies assessed the effects of a range of pharmacological (baclofen, botulinum toxin A) and non-pharmacological (casting, physiotherapy, splints, tilt table standing and electrical stimulation) interventions, often in combination. The studies which tested the effect of baclofen and tizanidine did not report their results adequately. Where outcome data were available, spasticity and adverse events were reported, in addition to some secondary outcome measures.

Of the five studies with results, three were funded by governments, charities or health services and two were funded by a pharmaceutical or medical technology company. The four studies without useable results were funded by pharmaceutical or medical technology companies.

It was difficult to draw conclusions about the effectiveness of these interventions due to poor reporting, small study size and the fact that participants with TBI were usually only a proportion of the overall total. Meta-analysis was not feasible due to the paucity of data and heterogeneity of interventions and comparator groups. Some studies concluded that the intervention they tested had beneficial effects on spasticity, and others found no difference between certain treatments. The most common adverse event was minor skin damage in people who received casting. We believe it would be misleading to provide any further description of study results given the quality of the evidence was very low for all outcomes.

Authors’ conclusions

The very low quality and limited amount of evidence about the management of spasticity in people with TBI means that we are uncertain about the effectiveness or harms of these interventions. Well-designed and adequately powered studies using functional outcome measures to test the interventions used in clinical practice are needed.

Plain language summary

Treatments for spasticity (overactive muscle contractions) following brain injury

Review question

We reviewed the evidence about the effect of treatments (drug and non-drug) for spasticity following a brain injury caused by a blow to the head (traumatic brain injury (TBI)).

Background

Many people with TBI experience muscle spasticity, when their muscles contract or tighten involuntarily. This can impact on a person’s ability to carry out daily activities causing pain, stiffness and broken skin. There are many treatments used to manage spasticity, including medicines, casting, splints and stretches. Often, these treatments are used in combination.

Study characteristics

We included nine studies in this review which involved 134 participants with TBI. Only five studies, including 105 people provided usable results. These studies tested the effects of a range of treatments, including medicines (baclofen or botulinum toxin A), casting, physiotherapy, splints, a table that moves people from the lying position to standing and electrical stimulation (where electrical impulses are delivered to the muscles). Studies inadequately reporting results had tested the effect of medicines (baclofen or tizanidine).

Study funding sources

Of the five studies with results, three were funded by governments, charities or health services and two were funded by a drug manufacturer and medical technology company. The other four studies without useable results were funded by drug manufacturer or medical technology companies.

Key results

This evidence is current to June 2017.

Interpreting the results of the studies was difficult because of a lack of information and concerns about the quality of the evidence. For spasticity, some studies concluded that the treatment they tested made an improvement, and others found no difference between treatments. The most common side effect was minor skin damage in people who received casting. We believe it would be misleading to provide any further description of study results given the quality of the evidence was very low for all measurements.

Quality of the evidence

The quality of this evidence was very low; we only had five studies with results and none of the studies were large or comparable with one another. We also had concerns about how they were conducted or analysed. Because of this, we cannot draw any firm conclusions about the benefits and harms of different treatments for spasticity in people with TBI.

via Interventions for managing skeletal muscle spasticity following traumatic brain injury – Synnot – 2017 – The Cochrane Library – Wiley Online Library

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[ARTICLE] Erythropoietin Attenuates the Brain Edema Response after Experimental Traumatic Brain Injury – Full Text

ABSTRACT

Erythropoietin (EPO) has neuroprotective effects in multiple central nervous system (CNS) injury models; however EPO’s effects on traumatic brain edema are elusive. To explore EPO as an intervention in traumatic brain edema, male Sprague–Dawley (SD) rats were subjected to blunt, controlled traumatic brain injury (TBI). Animals were randomized to EPO 5000 IU/kg or saline (control group) intraperitoneally within 30 min after trauma and once daily for 4 consecutive days. Brain MRI, immunohistofluorescence, immunohistochemistry, and quantitative protein analysis were performed at days 1 and 4 post- trauma. EPO significantly prevented the loss of the tight junction protein zona occludens 1 (ZO-1) observed in control animals after trauma. The decrease of ZO-1 in the control group was associated with an immunoglobulin (Ig)G increase in the perilesional parenchyma, indicating blood–brain barrier (BBB) dysfunction and increased permeability. EPO treatment attenuated decrease in apparent diffusion coefficient (ADC) after trauma, suggesting a reduction of cytotoxic edema, and reduced the IgG leakage, indicating that EPO contributed to preserve BBB integrity and attenuated vasogenic edema. Animals treated with EPO demonstrated conserved levels of aquaporin 4 (AQP4) protein expression in the perilesional area, whereas control animals showed a reduction of AQP4. We show that post TBI administration of EPO decreases early cytotoxic brain edema and preserves structural and functional properties of the BBB, leading to attenuation of the vasogenic edema response. The data support that the mechanisms involve preservation of the tight junction protein ZO-1 and the water channel AQP4, and indicate that treatment with EPO may have beneficial effects on the brain edema response following TBI.

Introduction

Traumatic brain injury (TBI) is a major cause of early death and neurological disability throughout the world and remains a major public health problem.1,2 Injury mechanisms in brain trauma include several cascades of events such as release of excitotoxic molecules, metabolic challenges, inflammation, and apoptosis, accompanied by breakdown of the blood–brain barrier (BBB) and cell swelling, which can finally lead to cell death. Despite several recent clinical studies based on promising experimental evidenc targeting injury mechanisms, there are currently no available pharmacological treatments that convincingly counteract secondary injuries and/or improve long-term functional recovery after human TBI.3–9

Erythropoietin (EPO) is a glycoprotein cytokine that has been investigated in TBI research. EPO is produced mainly in the kidney, but also locally in brain cells under hypoxic conditions.10,11 EPO receptors have been found throughout the brain in various cell types such as neurons, astrocytes, and endothelial cells.12–14 In the literature, there is a substantial body of evidence in support of non-hematopoietic, neuroprotective effects of EPO11,15 in models of central nervous system (CNS) injury such as ischemia, trauma, intracranial hemorrhages, and diffuse axonal injuries. The proposed mechanisms include decreased inflammatory response,16–18 decrease of oxidative stress and anti-apoptotic effects.16,19,20

The effects of EPO treatment in clinical CNS lesions/injuries have varied. A recent randomized, prospective, placebo-controlled clinical trial in ischemic stroke showed that EPO significantly improved long-term neurological outcome.21Following moderate or severe TBI, results on EPO treatment have been conflicting. One study found decreased mortality and improved neurological outcome,22 whereas the recent study by Nichol and colleagues did not find that EPO resulted in significant improvement of functional outcome when assessed 6 months after TBI.23

The clinical course that follows severe TBI is characterized by brain edema development and an associated increase in intracranial pressure contributing to most of the early deaths following trauma. Using a TBI model we have previously shown that the dynamic course of edema development include co-existing vasogenic and cytotoxic brain edema.24The aim of the present study was to investigate whether EPO treatment can modulate the dynamic brain edema response following experimental focal brain injury. […]

Continue —> Erythropoietin Attenuates the Brain Edema Response after Experimental Traumatic Brain Injury | Abstract

FIG. 2. (A) High magnification confocal immunofluorescence image of zona occludens 1 (ZO-1) (red), the glial cell marker glial fibrillary acidic protein (GFAP) (green), and the nucleus marker DAPI (blue) from brain area with blood vessels (longitudinal view of blood vessel to the left), to illustrate the specificity and localization of the antibody binding. (B) Monochromatic presentation of GFAP immunofluorescence. (C) Monochromatic presentation of ZO-1 immunofluorescence. (D) Summary data on ZO-1 immunofluorescence in the traumatized, ipsilateral, hemisphere normalized against the contralateral side at days 1 and 4 after trauma in control and erythropoietin (EPO)-treated animals. ZO-1 was significantly reduced after trauma in the control group. EPO prevented the loss of ZO-1 at both time points after trauma. Values presented as mean ± SD. DAPI, 4′,6-diamidino-2-phenylindole; #p < 0.05, ##p < 0.01 compared with naïve animals; **p < 0.01, ***p < 0.001 between groups.

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[WEB SITE] Can Cannabis Prevent and Treat Traumatic Brain Injury?

Traumatic Brain Injury, or TBI, is a serious condition usually caused by an external blow to the head that can cause severe and often chronic symptoms. These symptoms can be cognitive, behavioral, movement related, speech and visual impairing, mood altering, involve painful headaches, and even cause gastrointestinal issues.

Each year in just the U.S., nearly 52,000 people die from TBI and 80,000 sustain severe disabilities. Compare that to car fatalities (32,675) and homicides (14,196), which combined claim fewer lives. Moreover, 5.3 million people in the U.S. live with TBI-related disabilities, a number comparable to those living with Alzheimer’s disease.

How Cannabis Can Slow Traumatic Brain Injury Damage

Medical marijuana

While effective therapies to treat ongoing TBI symptoms have been difficult to come by, thanks to researchers like Prof. Yosef Sarne of Tel Aviv University, we’ve discovered that cannabis may prevent long-term brain damage by administering THC before or shortly after the injury. In fact, Israel Defense Force (IDF) practitioners administer CBD or low-dose THC as a first-line treatment to IDF soldiers – and even enemy combatants – who suffer brain trauma.

Sarne and his team published their results in 2013, where they demonstrated that administering just a fraction of the amount of THC that would be found in a typical cannabis joint anywhere from one to seven days prior to, or one to three days after an injury, induces the biochemical processes necessary to protect critical brain cells while preserving long-term cognitive function.

Can Cannabis Help People Currently Suffering From TBI?

Brain scan

Given the success found in Israel utilizing cannabis to halt TBI in its tracks, it begs the question: can cannabis help persistent TBI symptoms?

Anecdotally, many patients and their families report success. The daughter of one patient wrote in a Reddit forum:

“My father suffered severe TBI for years. He used to sit around hating his life all day. Once he started using marijuana, he changed a lot. He was able to get off some of his meds, start eating more, go outside, enjoy music, laugh at a movie, sleep at night, less anxiety in the day, less body pain. The list goes on and on.”

We hear many success stories like this, but these are, of course, anecdotal. Thus far, there aren’t any notable clinical trials demonstrating the efficacy of cannabis to treat ongoing symptoms in TBI patients. Unfortunately, even outside of cannabis research, phase II/III clinical trials of potential treatments haven’t demonstrated any consistent improvements in outcomes.

How Does Cannabis Consumption Affect the Brain?

The lack of cannabinoid-focused trials is likely due in part to the federal government’s long-standing position that cannabis is a “substance [with] no currently accepted medical use” and “a high potential for abuse” – a position that has long frustrated scientists who are forced to navigate significant bureaucratic obstacles to conduct high-quality rigorous studies.

Nonetheless, despite the federal government’s position, there is some evidence that at least lends support to speculation that cannabis-derived treatments may be beneficial:

Cannabinoids 101: What Makes Cannabis Medicine?

“Effect of Marijuana Use on Outcomes in Traumatic Brain Injury” (UCLA Medical Center, 2014):

In a three-year retrospective review of 446 separate cases of similarly injured patients, researchers found traumatic brain injury (TBI) patients who had a history of cannabis consumption possessed increased survival rates compared to non-consumers (97.6 percent survived surgery, versus 88.5% of those who didn’t consume cannabis).

“[O]ur data suggest an important link between the presence of a positive THC screen and improved survival after TBI,” the researchers concluded. “With continued research, more information will be uncovered regarding the therapeutic potential of THC, and further therapeutic interventions may be established.”

CTE in Professional Football Players, and the Potential of CBD to Address the Crisis

“Endocannabinoids and Traumatic Brain Injury” (Mechoulam, 2007):

This Israeli study points to research that demonstrates:

“…the [endocannabinoid] system…has the ability to [positively] affect the functional outcome after TBI by a variety of mechanisms.”

How Does Your Endocannabinoid System Impact Your Brain’s Response to Social Interaction?

“The Therapeutic Potential of the Cannabinoids in Neuroprotection” (Grundy RI, 2002):

This review shows that in experimental models:

“…various cannabinoids rescue dying neurons in experimental forms of acute neuronal injury, such as cerebral ischaemia and traumatic brain injury.”

5 Promising Cannabis Studies That Explore How Cannabinoids Interact with the Human Body

Positive results in experimental models don’t always translate to human subjects, hence the desperate need for more research. But, as early research shows promise and we know cannabinoids demonstrate neuroprotective effects in a variety of neurological conditions, there’s no excuse not to prioritize further research.

Further, because TBI is a condition affecting a highly complex, intricate system like the brain, successful strategies will likely involve more than a single “magic bullet.”

CBD Can Be Remarkably Effective for TBI

Patient receiving an MRI

In the meantime, as we continue to learn more about THC and other cannabinoids to treat traumatic brain injury, many physicians believe CBD can be a safe and effective treatment. CBD, a largely non-psychoactive cannabinoid that possesses neuroprotective, anti-inflammatory, and anti-anxiety properties, could be as close to a “magic bullet” as we have right now. In fact, CBD may be more beneficial than THC. Japanese researchers found cannabidiol (CBD) exhibited stronger antioxidative power than THC without creating tolerance to its neuroprotective effect.

Dr. Allan Frankel, of GreenBridge Medical in Santa Monica, California, believes incorporating small amounts of CBD as a daily nutritional supplement is a safe and sensible adjunct to therapy. “I had a patient recently, a 45 year mother who was in a bad car accident. She experienced memory loss, and hadn’t been making any progress. I suggested CBD,” recounts Frankel. “Within four to six weeks, she made significant progress – her cognitive function improved and her memory returned to normal.” Frankel notes that this is just one of many patients he’s had who have experienced successful recoveries.

While clearly there’s lots of promise in the limited research to date and anecdotal reports, we need to continue developing our understanding of cannabinoid neurobiology in order to most effectively exploit the numerous therapeutic properties of cannabis. We can then, hopefully, unleash the full spectrum of potential benefits cannabis may be able to provide and discover innovative new treatments that could quite possibly help the millions of people who continue to suffer.

How Does Cannabis Consumption Affect Neurodegenerative Diseases?

via Can Cannabis Prevent and Treat Traumatic Brain Injury? | Leafly

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[ARTICLE] Post-Acute Traumatic Brain Injury Rehabilitation Treatment Variables: A Mixed Methods Study – Full Text

Abstract

Purpose

This study explores gains in function, measured by the Mayo-Portland Adaptability Inventory-4 (MPAI-4) and qualitative interviews, of individuals who participated in a Post Hospital Interdisciplinary Brain Injury Rehabilitation – Residential (PHIDBIR-R) program as part of their recovery from brain injury.

Methods

The study uses a mixed methods design to identify correlates and explore pathways to functional recovery. Change scores from the MPAI-4 were derived to identify participants with greatest functional improvement. Qualitative interviews were employed to understand PHIDBIR-R program constructs associated with functional improvement. MPAI-4 data were derived from a bank of 135 PHIDBIR-R programs in 22 states. Participants were adults who sustained a brain injury and participated in a PHIDBIR-R program. 57 participants were identified as highest scorers; 10 completed semi-structured interviews.

Results

Data were analyzed using constant comparison procedures and rigorous credibility techniques. Thirteen themes within four categories (support, therapies, continuum of care, environment of care) emerged, reflecting participants’ understanding of constructs contributing to positive outcomes.

Conclusions

The results provided a cogent framework for program development, stakeholder program selection, and advocate and legislator considerations.

INTRODUCTION

Traumatic brain injury (TBI) is an alteration in brain function or other evidence of brain pathology caused by an external force. These injuries manifest as mild, moderate, or severe impairments to one or more areas, such as cognition, communication, memory, concentration, reasoning, physical functions, and psychosocial behavior [1].
The consequences of brain injuries are numerous with the potential to create life-long challenges for survivors and their families. Stories involving TBI permeate the news: the high-school athlete concussed in a football game, the soldier wounded in an explosive blast, and the teenager injured in a car accident. In these scenarios, futures transition from navigating routine activities to struggling to function.
A formidable fact surrounding these circumstances is that brain injury does not discriminate – it can happen to any person, at any time. Each year in the United States, 1.7 million TBIs occur either as an isolated injury or in conjunction with other injuries or illnesses. In the U.S., TBI is a contributing factor to nearly a third (30.5%) of all injury-related deaths [2] and figures indicate that 5.3 million people live with a TBI-related disability [3]. Annually, TBIs cost Americans $76.5 billion in medical care, rehabilitation, and loss of work [4,5].
Other etiologies of brain injury further elevate these numbers. The annual incidence of stroke is 795,000 [6]. Further, the annual estimate of brain tumors is 64,530, along with 27,000 aneurysms, and 20,000 viral encephalitis cases [68]. No national data are available for anoxic brain injury and other subtypes [1]. When all types of brain injury are aggregated, the annual occurrence in the U.S. approaches 8.5 million.
In addition, brain injuries reach beyond the individual who has sustained the TBI, affecting the lives of loved ones. Grief-stricken families witness trauma, entering a reality in which survival is the daily hope. Improvements in medical care have improved life expectancy, yielding a steady increase in the number of older adults living with a brain injury [9,10].
Once evident that an individual will survive the brain injury, goals focus on regaining lost function or rehabilitation. Just as each individual is unique, so is each recovery. Families commonly observe physical disabilities, impaired learning, and personality changes post injury. Nearly 20 years ago, the National Institutes of Health held a conference wherein an expert panel recommended that patients with TBI receive an individualized rehabilitation program based on the patient’s unique strengths and capacities, and adapted to needs over time. The group further advised that persons with moderate to severe brain injuries have individually tailored treatment programs that draw on the coordinated skills of various specialists [11].
Past research of rehabilitation following brain injury has often focused on the evaluation of a specific treatment modality or of a program’s efficacy as quantified by outcomes measurements. Many studies have sought to determine if rehabilitation has been successful, perhaps to the detriment of learning how rehabilitation has been efficacious. Studying how rehabilitation works over time is important in learning more about the individual and family experience while advancing an understanding of measured functional improvements.
Current research explores the therapies and interventions that facilitate long-term recovery of function. Individuals follow diverse recovery paths because there are a wide variety of options for rehabilitation [12]. This study focuses on Post-Hospital Inter-Disciplinary Brain Injury Rehabilitation – Residential (PHIDBIR-R) programs, which are 24-hour, 7-days a week rehabilitative care programs delivered in non-hospital, home-like, community-based environments. PHIDBIR-R programs strive to implement effective therapeutic interventions, supports, and services that maximize functional gains; these programs are judged on their ability to produce improvements in function [13].
While research efforts have focused on demonstrating positive outcomes, the identification of attributes that contribute to how improvement happens is largely untouched [1318]. Although several PHIDBIR-R programs report positive outcomes [19,20], the empirical evidence is limited and studies habitually focus on quantitative analysis. Including a qualitative component may provide insight into the PHIDBIR-R, eludicating how these experiences advance an understanding of functional improvements. […]

Continue —> Post-Acute Traumatic Brain Injury Rehabilitation Treatment Variables: A Mixed Methods Study

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[BLOG POST] Safety Nets: Travel After Brain Injury

There’s so much out there that beckons—family, friends, ethnic textiles, and, more recently, the writers’ world. I am compelled to answer the call—all the calls! I reject the invalid role that my bloody brain repeatedly tries to thrust on me.

In order to live a full life, I’ve had to learn to set up safety nets wherever I go.

Before the brain injury, I had no difficulty living a fast-paced life. I combined a full-time job with a variety of extra curricular activities including time-consuming hobbies, such as weaving and dragon boating. Travel was an integral part of my life, with trips to conferences, workshops, and with family and friends at home and abroad.

Now, in the wake of my injury, I can’t do nearly as much. Tasks that in my past life were a matter of course, such as grocery shopping and driving, deplete my resources. Travel now drains me, especially when it involves flying. Contending with the high volumes of sensory input streaming in at airports and in flight wears me out.

I’ve had to learn to apply coping mechanisms and compensation techniques to function with my damaged brain. Though pacing myself to prevent debilitating fatigue would seem easy to apply, for me, it is one of the hardest adjustments I’ve had to implement. When I travel, it’s especially difficult.

When I’m outside my home territory, having less control over the agenda hampers any attempts to slow down. Also, I don’t want people to worry. I don’t want to call attention to myself. I don’t want to miss out, and I don’t want to slow others down.

Another obstacle in my way is that future events, including possible sources of trouble, now mean less to me. As far as I’m concerned, much of the future is abstract. It’s as if the wiring between cause and effect, between my notion of past and future, is faulty.

Trips often don’t seem real until I actually land at the destination. As a result, planning and preparations don’t make sense. I usually pack for an upcoming trip at the last moment, and when I finally get to it, I have to force myself to do it. In my mind, there’s no good reason for me to undertake a task that now feels so overwhelming in its complexity. Since the injury, poor organizational skills and the difficulties in managing high volumes of data—figuring out what I need to pack, how to arrange it in my luggage, what bags should I take—are daunting.

In time, as I healed, I became better able to manage my bloody brain. I learned to set myself a list of unbreakable rules that help me prepare for trips. A side effect of my brain injury, a strong OCD (obsessive-compulsive disorder) streak, has a surprising benefit: I have a list of basics I need to pack that I follow religiously, plus a set way to organize items in my suitcase.

My rules also include arranging for safety nets.

I knew the trip to visit my family in Israel would be grueling. I knew better than to trust my own judgment. If I hoped to convince my bloody brain to cooperate, I needed someone to watch out for me, to keep me out of trouble.

Before the trip to Israel, I spoke to my sister about my anxiety. She understood and empathized—she’s walked in my shoes. She too has cavernous angiomas that have bled. Like me, she is often tempted to outpace herself. But unlike me she is assertive, and when all hell breaks loose with her bloody brain, she knows to take it easy and to rest despite outside pressure. I, on the other hand, have trouble protecting myself, no matter how bad shape I’m in.

During the trip, she shielded me from ambitious plans from well-meaning family and friends who wanted me to participate in activities that would drain my resources. And she also shielded me from myself; I was excited to spend time with my family, not wanting to cause concern, reluctant to disappoint, and too willing to go along with the crowd.

Unfortunately, the safety nets don’t always work. Some of the changes that the bloody brain brought about get in the way. I am more emotionally volatile now, and often, my emotions drive me instead of reason. In addition, my impaired memory and poor grasp of the connection between cause and effect often results in me downplaying potential difficulties.

During my first couple of days in Israel, I didn’t listen to my sister’s advice. I was sure I knew better and that I would be fine. Even after the bloody brain lashed out at me with a crippling headache, I felt that she was being overprotective. I did finally listen to her—not because I fully agreed with her, but because I didn’t want to upset her.

As my brain rewired post-injury, my memory and my ability to make connections improved. As my self-awareness grew and I became more in-tune with myself and the bloody brain, planning ahead was easier.

But even now, more than a decade since the surgeries, when I realize that common sense says, “wait a bit, take a break, don’t do so much,” there is still a niggling little voice inside me telling me that it’s not really necessary. I still overstretch myself, though nowhere near as much as I used to. I’m doing better now, I’ll be fine.

Now, where did I put that safety net?

via Safety Nets: Travel After Brain Injury | Brain Blogger

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[BLOG POST] 5 Things Every TBI Survivor Wants You to Understand

2015-03-04-1425489683-4035103-TBI5things.jpg

March is National Brain Injury Awareness Month, and as promised, I am writing a series of blogs to help educate others and bring awareness to traumatic brain injuries (TBI).

1. Our brains no longer work the same. 
We have cognitive deficiencies that don’t make sense, even to us. Some of us struggle to find the right word, while others can’t remember what they ate for breakfast. People who don’t understand, including some close to us, get annoyed with us and think we’re being “flaky” or not paying attention. Which couldn’t be further from the truth, we have to try even harder to pay attention to things because we know we have deficiencies.

Martha Gibbs from Richmond, VA, suffered a TBI in May of 2013 after the car she was a passenger in hit a tree at 50 mph. She sums up her “new brain” with these words:

Almost 2 years post-accident, I still suffer short-term memory loss and language/speech problems. I have learned to write everything down immediately or else it is more than likely that information is gone and cannot be retrieved. My brain sometimes does not allow my mouth to speak the words that I am trying to get out.

2. We suffer a great deal of fatigue.
We may seem “lazy” to those who don’t understand, but the reality is that our brains need a LOT more sleep than normal, healthy brains. We also have crazy sleep patterns, sometimes sleeping only three hours each night (those hours between 1 and 5 a.m. are very lonely when you’re wide awake) and at other times sleeping up to 14 hours each night (these nights are usually after exerting a lot of physical or mental energy).

Every single thing we do, whether physical or mental, takes a toll on our brain. The more we use it, the more it needs to rest. If we go out to a crowded restaurant with a lot of noise and stimulation, we may simply get overloaded and need to go home and rest. Even reading or watching tv causes our brains to fatigue.

Toni P from Alexandria, VA, has sustained multiple TBI’s from three auto accidents, her most recent one being in 2014. She sums up fatigue perfectly:

I love doing things others do, however my body does not appreciate the strain and causes me to ‘pay the price,’ which is something that others don’t see.  I like to describe that my cognitive/physical energy is like a change jar. Everything I do costs a little something out of the jar.  If I keep taking money out of the jar, without depositing anything back into the jar, eventually I run out of energy. I just don’t know when this will happen.  Sometimes it’s from an activity that seemed very simple, but was more work then I intended. For me, like others with TBIs, I’m not always aware of it until after I’ve done too much.

3. We live with fear and anxiety. 
Many of us live in a constant state of fear of hurting ourselves again. For myself personally, I have a fear of falling on the ice, and of hitting my head in general. I know I suffered a really hard blow to my head, and I am not sure exactly how much it can endure if I were to injure it again. I am deeply afraid that if it were to take another blow, I may not recover (ie, death) or I may find myself completely disabled. I am fortunate to have a great understanding of the Law of Attraction and am trying my hardest to change my fears into postive thoughts with the help of a therapist.

Others have a daily struggle of even trying to get out of bed in the morning. They are terrified of what might happen next to them. These are legitimate fears that many TBI survivors live with. For many, it manifests into anxiety. Some have such profound anxiety that they can hardly leave their home.

Jason Donarski-Wichlacz from Duluth, MN, received a TBI in December of 2014 after being kicked in the head by a patient in a behavioral health facility. He speaks of his struggles with anxiety:

I never had anxiety before, but now I have panic attacks everyday. Sometimes about my future and will I get better, will my wife leave me, am I still a good father. Other times it is because matching socks is overwhelming or someone ate the last peanut butter cup.

I startle and jump at almost everything. I can send my wife a text when she is in the room. I just sent the text, I know her phone is going to chime… Still I jump every time it chimes.

Grocery stores are terrifying. All the colors, the stimulation, and words everywhere. I get overwhelmed and can’t remember where anything is or what I came for.

4. We deal with chronic pain.
Many of us sustained multiple injuries in our accidents. Once the broken bones are healed, and the bruises and scars have faded, we still deal with a lot of chronic pain. For myself, I suffered a considerable amount of neck and chest damage. This pain is sometimes so bad that I am not able to get comfortable in bed to fall asleep. Others have constant migraines from hitting their head. For most of us, a change in weather wreaks all sort of havoc on our bodies.

Lynnika Butler, of Eureka, CA, fell on to concrete while having a seizure in 2011, fracturing her skull and resulting in a TBI. She speaks about her chronic migraine headaches (which are all too common for TBI survivors)

I never had migraines until I sustained a head injury. Now I have one, or sometimes a cluster of two or three, every few weeks. They also crop up when I am stressed or sleep deprived. Sometimes medication works like magic, but other times I have to wait out the pain. When the migraine is over, I am usually exhausted and spacey for a day or two.

5. We often feel isolated and alone.
Because of all the issues I stated above, we sometimes have a hard time leaving the house. Recently I attended a get together of friends at a restaurant. There were TVs all over the room, all on different channels. The lights were dim and there was a lot of buzz from all of the talking. I had a very hard time concentrating on what anyone at our table was saying, and the constantly changing lights on the TVs were just too much for me to bear. It was sensory stimulation overload. I lasted about two hours before I had to go home and collapse into bed. My friends don’t see that part. They don’t understand what it’s like. This is what causes many of us to feel so isolated and alone. The “invisible” aspect of what we deal with on a daily basis is a lonely struggle.

Kirsten Selberg from San Francisco, CA, fell while ice skating just over a year ago and sustained a TBI. She speaks to the feelings of depression and isolation so perfectly:

Even though my TBI was a ‘mild’ one, I found myself dealing with a depression that was two-fold. I was not only depressed because of my new mental and physical limitations, but also because many of my symptoms forced me to spend long periods of time self-isolating from the things — like social interactions — that would trigger problems for me. With TBI it is very easy to get mentally and emotionally turned inward, which is a very lonely place to be.

Also, check out my other blogs on the Huffington Post:
“Life With a Traumatic Brain Injury”
“Life With a TBI: March is National Brain Injury Awareness Month”

I invite you to join my TBI Tribe on Facebook if you are a survivor, or loved one of a survivor.

via 5 Things Every TBI Survivor Wants You to Understand | HuffPost

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[Study] A New Online Program May Help People with TBI Build Emotion Regulation Skills – NARIC

A traumatic brain injury (TBI) is lasting brain damage from an external force, such as a fall or a car accident. People with TBI may have challenges with emotion regulation (ER), the process of recognizing and controlling their feelings or their reactions to feelings. Previous research has shown that a structured group therapy program can help people with TBI develop and practice ER skills in real-life situations. However, some people with TBI may not be able to get to a clinic to receive group therapy, or they may not be able to afford it. Internet-based therapy programs may offer a convenient alternative for these individuals to receive the therapy they need. In a recent NIDILRR-funded study, researchers tested an Internet-based program to teach ER skills to people with TBI through group videoconferencing. The researchers wanted to find out whether people who participated in the program experienced less difficulties with ER after the program than before, and whether they experienced improvements in mood or quality of life. They also wanted to find out what the participants thought of the online program format.

Researchers at the New York Traumatic Brain Injury Model System Center enrolled 91 adults with TBI in a study. The participants came from 33 U.S. states and 5 countries. They had experienced their TBI at least six months prior to starting the program, with a group average of five years of living with TBI. All of the participants reported multiple challenges with ER.

All of the participants were enrolled in the experimental program, called Online EmReg, which was adapted from a face-to-face group therapy program. Online EmReg consists of 24 one-hour videoconference sessions, held twice a week for 12 weeks. A small group of 4-5 participants attend each session, which is led by a trained facilitator. The participants and facilitator use the GotoMeeting platform to communicate and share information. During the first 8 sessions, the participants learn about the basics of ER, how ER can be impacted by TBI, and some specific strategies or tools for managing their emotions. The participants also set specific goals for improvements during the program, such as learning to feel calmer under pressure or being more patient with themselves and others. During the final 16 program sessions, the participants practice their skills in individual and group exercises.

To find out how the program impacted ER, the researchers gave online questionnaires to the participants 4 weeks before the program started, immediately after the program ended, and again 12 weeks after the program ended. Each questionnaire included a 36-question scale called the Difficulties with Emotion Regulation Scale (DERS), where the participants reported how often they encounter various challenges with ER, such as losing control of impulses or having trouble identifying their feelings, on a scale from 1 (almost never) to 5 (almost always). The participants also completed additional scales rating their current positive and negative emotions, overall satisfaction with their lives, and the extent to which they experienced challenges with other mental activities such as problem-solving, planning, and decision-making. To find out what the participants thought of the program, the participants answered questions regarding their satisfaction with the program and the extent to which they felt they achieved their goals for the program. Each participant was also interviewed by phone after the program ended to obtain more detailed feedback.

The researchers found that the participants reported less frequent challenges with ER after the program started than before. Their total scores on the DERS decreased by an average of 10% between the beginning and end of the program, and these scores decreased by another 4% during the 12 weeks after the program ended, for a total decrease of 14% by the end of the follow-up period. The participants also reported an 18%  decrease in negative emotions, a 17% improvement in overall satisfaction with their lives, and a 65% improvement in planning and decision-making scores, and an 11% improvement in problem-solving scores between the beginning and end of the program. The participants’ overall satisfaction with their lives increased by another 14% during the 12 weeks after the end of the program, for a total increase of 31%.

The researchers also found that most of the participants were satisfied with the program and found it helpful. When asked to rate their improvement in ER skills during the program, 49% of the participants reported a large improvement, another 41% reported a moderate improvement, and only 10% reported little or no improvement. During the interviews after the program had ended, nearly all of the participants said that they felt the program was relevant to their goals. The participants said that the program was a good learning experience, that they enjoyed the connections with others, and that it was convenient to participate from their homes.

The authors noted that, because there was no comparison group for this study, it is unclear whether or not the improvements were a direct result of the program or if the participants’ skills simply improved over time. In the future, randomized experiments may be useful in establishing the impact of the Online EmReg program compared with usual care for people with TBI. They also noted that the participants in this study had access to the high-speed Internet and equipment necessary to use videoconferencing, which may not be available to people with lower incomes or those who live in rural areas. These individuals might face more challenges to participating in this type of program.

The authors noted that Internet-based programs such as Online EmReg may benefit diverse groups of people with TBI, particularly those who live far away from a medical center or who may not be able to travel for regular appointments. The program can also be implemented at low cost since videoconferencing platforms such as GoToMeeting may be free for participants to use. In this study, the participants were very satisfied with the Online EmReg program, and reported improvements in ER as well as more general life satisfaction and well-being. These improvements were maintained over time after the program was over, suggesting that the participants may have continued to practice and apply their newfound skills in their everyday lives. These findings may show a promise for researchers and rehabilitation professionals to consider developing similar programs for people with TBI to practice coping skills and exchange support with one another.

To Learn More

The authors continue to study the impact of Online EmReg with a new NIDILRR-funded randomized controlled trial as part of the 2017-2022 New York TBI Model System Center. To learn more about the current study and how to participate, contact the Brain Injury Research Center at birc@mountsinai.org

The Model Systems Knowledge Translation Center (MKSTC) has many information resources for people living with TBI, including:

Tessa Hart, PhD, director of the NIDILRR-funded Moss TBI Model System Center, discussed recent research in ER and TBI in a blog post at Moss Rehabilitation Hospital http://mrri.org/regulating-emotion-after-traumatic-brain-injury/

People living with TBI and their families can find a wealth of information and support resources, including local groups and organizations, from the Brain Injury Association of America http://www.biausa.org and from Brainline.org http://www.brainline.org

To Learn More About this Study

Tsaousides, T., Spielman, L., Kajankova, M., Guetta, G., Gordon, W., and Dams-O’Connor, K. (2017) Improving emotional regulation following Web-based group intervention for individuals with traumatic brain injury. Journal of Head Trauma Rehabilitation, 32(5) 354-365. This article is available from the NARIC collection under accession number J77071.

Date published:

2017-12-06

via National Rehabilitation Information Center | Information for Independence

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[WEB SITE] 31 Strategies for Living with Traumatic Brain Injury – BrainLine

by Melissa Johnson, Bringing the Battle Home
31 Strategies for Living with Traumatic Brain Injury
Caregiver blogger, Melissa Johnson, shares 31 tips and strategies she uses to help her husband cope with his TBI in a more effective manner.

1. Use a Mobile Calendar App

I created a calendar for Sean in my iPhone and shared it with him (see brief instructions below or click here). Now I can add his appointments, meetings, and trips on my phone and he is able to access them through the app on his iPhone and iPad. In addition to time and date, I can add the location or notes for the event. The app allows me set alerts which come across both our mobile devices as notifications. I normally set alerts a day in advance and an hour in advance to allow  me time to remind him and avoid last-minute surprise. Using the calendar also helps me track his events that aren’t on my personal schedule (such as VFW meetings). I check the calendar each night and remind Sean of the next day’s schedule. It’s handy because i can manage it for him, see any items he adds himself, and view my own calendar at the same time.

Open the iPhone’s calendar app and click on “Calendars”:

Open the iPhone's calendar app and click on Calendars

Select “Edit” under iCloud Calendars:

Select Edit under iCloud Calendars

Select “Add Calendar” and follow instructions for naming calendar:

Select Add Calendar and follow instructions for naming calendar

Select “Add Person” to share the calendar:

Select Add Person to share the calendar

2. Sign up for Cozi

Visit cozi.com and sign up for their shared online calendar (I use the free version). Cozi offers shared calendars and lists that can be accessed by any family members with login information on their computers or mobile devices. You can opt to text individual mobile devices with appointments and notes automatically. I use Cozi to send Sean text messages each day reminding him to take medications and when to eat meals. I have the texts sent to my phone as well so I can verbally remind him (in case I lose track of time). There is room to add notes to each event, so messages sent can be as detailed as needed.

3. Develop a White Board Schedule

We started with a very detailed daily schedule to help Sean remember the progression of each day’s tasks. It worked well for a time, then reached a point where it overwhelmed him visually and cognitively. We now use a simpler version and combine it with text reminders for medications, meals etc. and verbal reminders.

Develop a White Board Schedule

Develop a White Board Schedule

4. Hold Daily Meetings

Choose a time of day that is structured (not over dinner, while doing homework with the kids, or while distracted with other activities) and is a typically a good time of day for focus. Sean and I chose to have our meetings each morning. This time was set aside to review the day’s activities, discuss needs, and address any military or VA issues or answer questions he had (to avoid fixating on these issues all day long—which had become a huge problem). We recorded a few notes in a notebook so he could look back at the discussion if he had questions later in the day, or needed a reminder of what we decided. Gradually, we have moved away from structured meetings since we don’t deal with the same volume of VA and military issues at the moment, and instead do a brief check in each morning to cover his schedule. I also check the calendar on Sunday night and alert him to upcoming activities and appointments for the week ahead.

5. Use a Timer

Time can be difficult to track for a person with a TBI. Setting a timer can help add structure to the day, aid in staying on task, and improve efficiency and independence. Try setting a timer to:

  • Break tasks into smaller steps
  • Allow for scheduled breaks
  • Set start or end times for activities
  • Allow transition time

6. Use Labels

TBI can make it difficult to remember where items are stored, and looking through multiple cupboards and drawers can add frustration. We use a system of labels around the house to locate key items.  After our home remodel a couple years ago, Sean found the increased number of light switches especially confusing, so I labeled those as well. You may want to label drawers, cupboard doors, bathroom cabinets, nightstand drawers, storage in the garage, etc. to fit the needs in your home.

Use Labels

It can also be confusing, and even frightening, to operate appliances or equipment. Sean struggled for months to operate the new microwave since the buttons were different. Our new flat-top stove was a particular concern as the burners have options for different sized pans, and the surface stays hot long after the burner is turned off. I printed brief instructions for each appliance, mounted on a magnetic sheet, and covered with laminating film so they can be wiped clean, if needed. We also used orange bump dots to mark the buttons he may  need to use most to make them more visible.

Laminate labels so they can be wiped clean.

Laminte labels so they can be wiped clean.

It’s easy to forget the items you need when you leave the house. I hang notes on doors (try colored Post It notes), and set necessary items on a chair next to the back door where they will be visible on the way out. I also made magnetic notes for items Sean needs each time he leaves the house.

Magnetic notes for items Sean needs each time he leaves the house.

7. Keep Things in the Same Location

When our daughter was home last summer she helped put groceries away and moved the yogurt to the opposite side of the refrigerator shelf. Sean thought we were out of yogurt for days when in fact we had plenty–just in the wrong spot. The same happens if I wash a bag of carrots and put them in a Tupperware bowl to preserve freshness. I now label that container so he knows what’s inside (the same for fresh cut fruit or vegetables) with reusable wipe-off labels.

Staying organized is a matter of establishing a habit for most of us. Many times I can’t find my wallet, keys, or phone if I put them in new locations. We have a shelf by the door for Sean’s keys and wallet. His medications for the day go on the same counter each morning. His chargers stay plugged in next to his nightstand. His hearing aids stay on top of the dresser. He has a small set of stacking drawers on his dresser for extra keys, cords, and eyeglasses. This routine aids with memory when he can’t locate an item.

8. Simplify Household Chores

Keep chores simple. We have learned that multi-step instructions or long lists of tasks overwhelm Sean’s brain and result in nothing being accomplished. To enable him to be helpful and avoid nagging we’ve come up with our own system.

Sean has a few tasks that he is in charge of completing. I can remind him with a note on the counter, but then allow plenty of time for him to complete the job independently. He is in charge of taking out the trash, feeding the dogs in the afternoon, keeping his area in the basement clean and organized, and putting away leftovers after each meal. In order to ensure he is completing chores independently, I do not step in to take over or redo what he has done. This means the trash might sit in the porch for a couple days until he remembers to pick it up and take it outside (though I remind him more frequently if it has food waste or it’s hot outside).

Sean still enjoys maintaining our home and yard, although he’s not able to do many tasks independently. He is no longer able to safely mow the lawn or shovel the snow. Since I have no desire to do either, our solution was to locate dependable people who offer those services and make it Sean’s job to call them when needed. At times it takes a day or two for him to remember to make the call, but the responsibility for doing so is solely his. He also calls to schedule car maintenance or home repair and I help him identify the person to call when necessary.

It’s important to note that changes in our routine (illness, pain, travel, company) will disrupt his routine and we will need to start over getting him back on track.

9. Create a Safe Space

Sensory overload and stress can lead to fatigue, anxiety, and anger. Having a safe space to retreat and decompress is an easy way to take time away and calm down or rest. Choose a quiet place that can be dedicated to relaxing activities. Equip this space with whatever you find comforting: TV, headphones, computer, comfortable chair, puzzles, books, etc. It is helpful to have items dedicated only to this space, with spares for other areas of the house, so this area is always prepared and ready.

When spending time at the home of relatives or friends, try to identify a safe space ahead of time. Talk to the host about the purpose of this space and ask them to help you select a location. Bring portable headphones, laptop, iPad, books, etc. in a back pack as a “mobile safe space.” Prepare ahead of time by discussing the plan and visit the safe area when you arrive.

Be aware of clues. For example, if Sean disappears with no notice I know he is taking down time and doesn’t need my support, but if he is seeking my attention, he needs me to direct him to the safe area and help him get settled in. He may need pain meds or extra support.

It may also be helpful to choose a safe word or code word that can be used during times of distress.

10. Using Tools to Aid Memory

Highlighters and Post-It notes or sticky tabs are great for marking important information in books, binders, and manuals. They are also handy if you print emails, memos, or meeting notes.

Digital recorders can be used to record meetings or classes, but can also be used to keep audio notes or reminders throughout the day. Most smart devices have digital recorders built in, so there is no need to purchase a separate device.

Lists can serve a variety of purposes. Sean is currently using a small whiteboard to track his to-do items for bike camp along with his weekly schedule. He keeps a Post-It note on the counter where he can jot down things he needs me to know (which can range from grocery items to appointments or tasks) and I can add to the calendar or to my own list. We also keep a list of his goals on the bulletin board along with a list of upcoming travel dates. The key is keeping all these lists in one location so he knows where to find them.

11. Track Health and Activity

It is important to document health changes and symptoms to identify patterns and track changes over time. Many times when doctors ask Sean how has been feeling, his answer is based on how he is feeling at the moment because he can’t recall how his mood or pain has been over the past few weeks or months since he last saw the doctor.

I make brief notes each day on Sean’s level and type of pain, if he uses additional medications, his sleep quality, nightmares, periods of confusion, etc. along with his activity levels such as riding his bike, walking his dog, or attending events and meetings. This enables us to give his providers the most accurate picture of his overall health and activity.

12. Manage Medications

Medication errors can be harmful or even fatal. Be sure to keep all medications in a safe place (we use a small safe) out of reach of children. Store medications in their original containers with pharmacy labels intact. Double check dates on labels for expiration and refill information.

Since Sean takes many daily pills, we use a pill sorter designed to hold a week’s worth of medication and divided into slots for AM, noon, and PM medications (the Velcro at the top of each box is to help him identify the AM container due to diminished vision). Occasionally, Sean gets confused and takes pills from the wrong slot at the wrong time of day, so we use a small jar with a lid to avoid confusion.

We keep an up-to-date printed list of medications in the safe, my purse, Sean’s wallet, and with emergency information.

If you receive prescriptions from the VA, you can use My HealtheVet to manage prescriptions and refills.

For more information, read this article about VA prescriptions from Family Of a Vet.

13. Find a Hobby

Keeping the mind and body active is an effective tool against depression, anxiety, and even pain. After an injury, it can be difficult to stay active and enjoy the same activities as before. Finding a hobby is one way to stay connected with others and constructively deal with stress and tension.

Exploring different hobbies can open your mind to new and creative endeavors. Engage local friends and family members to increase your amount of social interaction. Check your local area for hobby groups that have clubs or meetings. Take a class to learn something new.

Take time to explore alternatives and get connected with groups that offer adaptive sporting programs like Challenge Aspen Military OpportunitiesLakeshore Foundation’s Lima Foxtrot programUSABA, and Higher Ground (a few of many available to veterans). Building new skills is an excellent strategy for coping with changes in your life.

Volunteer activities can also offer a fantastic outlet and can become a hobby of sorts, too. The focus is on finding new activities to keep you active and healthy.

14. Allow More Time to Complete Activities

Cognitive deficits due to TBI can cause a variety of processing and attention difficulties. The following are key areas that can impact success when completing tasks and activities:

  • Difficulty sustaining concentration for a period of time
  • Inability to filter or combine information
  • Losing track of time
  • Fixating on one aspect of the task, unable to move forward
  • Inability to make decisions, or making quick decisions which are not thought out
  • Memory and confusion issues
  • Slower processing time

It is important to allow time to think and respond, and provide prompting as necessary. Good ways to assist include:

  • Be generous with wait time.
  • Limit the number of steps.
  • Use note cards or prompts.
  • Remember building toward independence is a process.

15. Use Photo Albums to Aid in Memory

Several years ago Sean and my dad went on a fly fishing trip to Sun Valley Idaho. A few weeks later a friend asked Sean about the trip. Sean gave a blank stare and said he hadn’t been on a fishing trip. Several other times Sean has had difficulty remembering the events of trips, and the people he has met. I have put together small albums from each trip to help Sean recall these events. I have used labels to help him identify people. We look at the photos together and talk about what he did that he enjoyed. Slowly, people he has met multiple times have stuck in his memory. It’s handy when he asks questions about a trip, or about someone he’s met, to have the photos close at hand.

16. Use a Script

That might sound funny at first, but it’s incredibly helpful. I have found over the years that having scripts for the children when they are assisting Sean can make for a much smoother visit. I have included a few examples. Be sure to make note of what works in your individual situation.

Our daughter was staying with Sean and he was requesting to eat out every night. She had purchased groceries and was getting frustrated with his wanting to change her plans every night. I explained that he was probably getting hungry and making suggestions simply as a way to solve his hunger problem. I told her that as it neared dinner time she should tell him, “I’m making ____ for dinner tonight. It will be ready around 6:00.” The simple act of making him aware of what was coming next was enough to put him at ease.

When he gets anxious in public we practice using calming words such as, “We will be finished shortly.” “I understand your frustration, let’s finish up and get out of here.” “If you need to leave, just let me know.” Hearing the phrases he is used to helps him remain calm, and helps whoever is assisting him know what to do in tense situations.

When Sean is having a migraine the pain is normally compounded by confusion. He repeatedly gets out of bed, or asks what he should be doing. It is helpful to say, “You need to lay down (take a pill, use an ice pack, stay still) until you are feeling better. That’s your only job right now.” I may need to repeat it a few times, but it works much more effectively than trying to answer each question or concern he raises.

17. Manage Stress

Stress is a normal physical response to events that make you feel threatened or upset your balance in some way.  Stress can also impair cognition, processing, and memory, and prolonged stress can wreak havoc on the entire body.  It’s important to take time to restore the balance in your body and brain on a regular basis. Here are a few ways you can recover from and reduce the stress in your life.

  • Get regular exercise.
  • Eat a healthy diet.
  • Practice good sleep habits.
  • Reduce caffeine and sugar intake.
  • Avoid alcohol, cigarettes, and other drugs.
  • Take regular breaks.
  • Learn to say no.
  • Take time to connect with others.
  • Find activities that replenish your soul.

18. Stick to a Routine

Individuals with brain injury may have difficulty planning and organizing their daily tasks. It is helpful to plan out a consistent routine at home that is predictable. Get up at the same time each day. Perform hygiene tasks in the same order. Eat scheduled meals. Use checklists where necessary to help stay on track. Predictability can reduce anxiety about the unknown and consistency will increase the level of independence in the home.

19. Travel Wisely

Travel can be stressful even under the best of circumstances. Being prepared can ensure your travel plans go as smoothly as possible.

Use a specific packing list. Sean often means to pack an item, or thinks he has it when he doesn’t. Having a list to check off allows him to pack independently and be confident he has all he needs.

Bring enough medications (prescription and over-the-counter as needed). Include an extra day or two to allow a buffer should travel plans change. Be sure to include extra pain medications. Always keep medications and any critical care items in your carry-on baggage should flights be canceled or delayed

Pack a variety of comfort items and activities such as a travel pillow and blanket, books or audio books, portable electronic device loaded with music or games, headphones, and snacks. Sean packs the items he needs in his backpack whether we are flying or driving so he has them close at hand.

If you have a service dog, be sure to include treats and comfort items along with necessary care tools and plenty of food. Keep the dog’s critical items in your carry-on baggage. It’s helpful to have ADA guidelines available along with service animal guidelines from the Air Carrier Access Act (see Seat Assignments page 6) should you encounter any questions or concerns about your service animal.

If driving, be prepared to make stops along the way and allow break time.

When flying, allow enough time to comfortably get through security and to gates on time. TSA offers a service for disabled veterans that will provide assistance at the airport. Contact the TSA Cares Helpline for more information.

When you arrive at your destination, allow time to settle in before starting activities.

If you are staying in a hotel, locate nearby restaurants or choose a hotel with a restaurant onsite. Dine at off-peak hours to avoid crowds.

If using public transportation, study the routes and fares ahead of time. Have taxi fare and reliable cab company numbers on hand. If driving, know the best routes around town and the locations of your destinations.

Have a clear (but flexible) itinerary with planned breaks and meal times.

Remember that when you return home extra recovery time will be needed before starting your normal routine.

20. Prepare Simple Meals

One of Sean’s goals is to help plan and prepare meals a couple times a week. Sean received training in safe cooking techniques during his blind rehab programs and is interested in becoming more independent in the kitchen.

  • Plan the menu and shopping list. Choose meals with fewer steps to follow.
  • Store all items in one spot with a label in the cupboard and/or refrigerator.
  • Use a tray to gather ingredients at preparation time. Gather needed cooking utensils in the same fashion. Have a timer available.
  • Use recipe cards with clear steps. Follow all steps in order and use the timer to signal when it’s time for the next step.
  • Practice kitchen safety.
  • Include clean up as part of meal prep.

Store all items in one spot with a label in the cupboard and/or refrigerator.Store all items in one spot with a label in the cupboard and/or refrigerator.

You might also try make-ahead freezer meals that can be reheated by following instructions taped to the container. Convenience meals such as microwave meals, frozen dinners, or sandwiches are another easy way to share in the cooking responsibilities.

21. Prepare for Absence or Illness

Preparing to be away from home (or, gasp! sick) can be incredibly stressful. By planning ahead of time (when possible) you can make your absence easier for all parties. Pre-planning is especially valuable when absences come as a surprise.

Identify how the care recipient will:

  • get to and from appointments, meetings, and outings
  • get meals or groceries (and/or remember to prepare and eat meals)
    • stock up on microwaveable meals, canned goods, frozen foods, juices
  • remember to take medications
  • care for pets
  • stay on a sleep schedule
  • clean up

Identify people who can assist with daily tasks, or who can stop by during the day to check in.

Have a list of emergency number on hand.

Have copies of medication lists, doctors, insurance information in a central location.

Help your loved one identify what he/she can do to help you. Being helpful and providing care for you is an easy way to put anxieties to rest.

22. Emergency Information

Always carry emergency information in your wallet or purse. This information should include medical conditions, doctors’ information, current medications, and insurance information along with any emergency contact numbers.

As an added measure, you might consider a free AVBI Medical Alert Tag and ID Cardthrough American Veterans with Brain Injuries.

A new option available for purchase is My ID band which allows medical professionals to electronically access your emergency information.

Smart phone users can download an app such as ICE (In Case of Emergency) which displays emergency information on the lock screen in case you are in an accident.

23. Create an Emergency Binder

I know what to do in an emergency involving Sean. I carry his critical medical information and know his history. But what if an accident occurred and I was not the person on the scene? What if something happened to me, would he know what to do? Creating an Emergency Binder could literally save a life.

Things to include:

  • Personal Information (for each family member): name, SSN, DOB, height, weight
  • Copies of insurance cards, VA ID card, military ID
  • Allergy information
  • Names of doctors with specialties and contact information
  • Brief medical history, including any mental health conditions
  • Current medications and dosages with prescriber and pharmacy information
  • Emergency contact numbers for family members
  • Copies of legal documents such as a Durable Power of Attorney for Health Care, Living Will, and Advance Directives

If you are interested in a free, ready-made packet you can print and fill in, email me at melissa@familyofavet.com and I will send to you.

Also, be sure to post emergency numbers in a visible location and include suicide hotline numbers.

24. Use Apps

Check out these Life-Changing Mobile Apps for People with Brain Injury.

From this list Sean uses Audible, Cozi, ICE, Lumosity, PTSD Coach, Dragon Dictation, Breathe2Relax, and T2 Mood Tracker. Check them out and see what might work for your situation.

Sean also uses Brain Fit and Brain Trainer apps occasionally. He has the MyLocation app which allows a user to find their location and share with others. Sean’s is set up to send me his location if he is confused or lost.

25. Educate Family and Friends

It can be incredibly difficult for family members and friends to understand the changes that happen after injury. This is especially true when dealing with an invisible injury like TBI. It’s important to have a support system that includes loved ones, which means you may need to take an active role as educator to help them understand how the injury has impacted the immediate family, as well as the care recipient, and how they can best be of assistance.

Be prepared to have difficult conversations. Whether discussing care concerns or expressing a need for space and privacy, conversations with family members can be touchy post injury.

Have realistic expectations. Every member of the team has different abilities, skills, comfort levels, and limitations.

Be clear about who is in charge of making care decisions, and what medical information will be shared.

Share strategies that work. Encourage others to get involved in positive ways by following the model that works for you.

Make necessary adaptations for holidays and events. Discuss strategies for success in advance.

Most importantly, be sure all members are educated about the nature of the disability and expected outcomes. Share information on TBI that you find helpful. You can find tons of helpful articles and videos at BrainlineBrainline Military, and Family Of a Vet. Also check out Brain Injury Association of America and American Veterans with Brain Injuries. Visit your local county extension office, or do a quick google search, for local brain injury agencies or support groups.

26. Keep a Journal

Journaling has been shown to help reduce symptoms of anxiety and depression and improve overall feelings of self-worth. Taking time each day to jot down notes about the events of the day and how you felt throughout the day is an excellent tool to help get in touch with emotions and process feelings. By reading through previous journal entries you can identify common stressors or triggers and develop a plan for positive coping strategies when those triggers arise. Depending on your preference, a personal journal can be shared with doctors or counselors for more insight.

For those with TBI, a journal can also serve as a reference book to record events and memories. It’s easy to look back and see when something happened, or browse through entries to refresh your memory.

If paper and pencil isn’t your thing, or you’re on the go, try using a digital voice recorder to dictate your journal entries

27. Keep it Simple

Eliminate what you can. Think you can’t? Start by reviewing activities for each family member. Evaluate your choices. Why are you involved with each activity? Is this activity meaningful and necessary? Does this activity enrich our lives in long-term ways? If not, consider eliminating it. Keep in mind that the goal is to streamline your home life and relieve stress and tension from your family.

Consider your options. You won’t be the world’s worst parent if you don’t attend every single game. Talk to other parents about carpooling to activities. There are usually other parents who would be relieved by a rotating schedule. If a season-long program doesn’t fit into your schedule, check into local day camps or classes your child could attend. Choose activities where your child is adequately supervised and time is structured to gain time for yourself. Use this time to run errands, or, bring a good book and enjoy a little down time.

Don’t do things simply because you’re feeling pressured. While it may be easier to say “yes” in the moment, think about how you will feel once you are obligated. If it’s not the right choice for you say “no” and stick to it.

What can you outsource? Do you have a neighbor who can share carpooling duties to and from school? Is there a friend or family member who can take the kids off-site for playdates? Can you afford to have someone come in to clean or have groceries delivered? Check with your local VA facilities, veterans’ organizations, or churches for additional resources and services.

Be honest about your needs and limitations. Many times people want to help but don’t know how.

Utilize available services such as Occupational Therapy, Speech Therapy, Physical Therapy, or Recreation Therapy along with services through any available caregiver programs. These trained professionals have a wealth of information and resources.

Forgive yourself. No one is prepared for major life changes. It’s ok to not have all the answers or to not have your sh*t together all the time. We all struggle to get through the day at times and find it takes much longer to recover after setbacks or when new issues arise.

28. Get Plenty of Sleep

Sleep is essential to good physical and mental health. When you don’t get enough sleep memory, concentration, coordination, and mood are negatively impacted. Lack of sleep over a period of time causes your physical health to decline and can lead to increased depression and anxiety. Sean’s nightmares, night sweats, insomnia, fatigue, restless leg syndrome, sleep apnea, and chronic pain all have a negative impact on his quality and quantity of sleep (and mine!). Sleep medications help with some of the symptoms, but don’t solve the problem.

To combat sleep deprivation and allow your body as much rest as possible, establish a sleep schedule by going to be and waking at set times each day.  Take naps, if needed, early in the day. Avoid if napping disrupts nighttime sleep.

Turn off electronics. Keep the room dark and cool. Make the bedroom a quiet space, or use a white noise machine to create an audibly peaceful environment. Invest in a comfortable mattress, pillows, and bedding.

Avoid caffeine and sugar after dinner, and don’t eat large meals late in the day. Alcohol and nicotine can also be factors in quality of sleep.

Take time to unwind before bedtime. Read, meditate, or practice deep breathing exercises. Take a warm bath. Listen to soothing music. Dim the lights. This can help your body and brain get into sleep mode.

29. Encourage Independence

Independence is a critical component of recovery after TBI. While your loved one may not be able to do all their former activities to the same extent as before the injury, implementing support and modifications can maximize independence.

  • Set realistic goals and start small.
  • Create an environment for success. Have needed materials on hand in areas where they are easy to access.
  • Use checklists or verbal prompts where possible.
  • Practice safety and good judgement.
  • Give immediate, constructive feedback. Use praise and encouragement.
  • Accept that mistakes will happen and make modifications when necessary.
  • Connect with others who will encourage independence in or out of the home.

30. Use Praise and Positive Affirmations

A little praise can go a long way toward boosting a person’s mood and creating a positive pattern of behavior and interaction.

  • Remember to say, “Thank you.” Even for the small things like taking out the trash (even if it takes several days to get it done) or wiping off the table.
  • Leave little notes of appreciation around the house.
  • Share your pride in their accomplishments.
  • Keep a gratitude journal.

31. Resources

Looking for additional information on traumatic brain injury? Check out these websites:

Additional resources and reading material available on tabs at the top of this page.

Posted on BrainLine October 25, 2016

About the Author

Melissa and Sean JohnsonMelissa Johnson and her husband, Sean, were married in 1995 and raised their three children in Aberdeen, SD. Melissa taught for 15 years in Special Education and First Grade. Sean served in the US Army and was deployed three times in his 24-year career in the military. Sean was injured by a mortar blast on March 25, 2006, in Balad, Iraq. The blast resulted in a traumatic brain injury. Sean is also legally blind and struggles with post-traumatic stress disorder.

When Sean returned home in 2007, the family struggled to adjust to this “new” man in their house. Melissa eventually left her teaching job to become a full-time caregiver to her husband. She is now a certified caregiver through the VA’s Caregiver Program.

Both Melissa and Sean have been active with the Blinded Veterans Association since 2009. Sean serves as Commander of his local VFW chapter and is also the Junior Vice of the local Disabled American Veterans chapter. Melissa currently works with the Military and Veteran Caregiver Network as the Education and Training Coordinator. She serves with the Elizabeth Dole Foundation as a Caregiver Fellow. She is honored to work alongside other caregivers from across the nation to raise awareness of the issues facing our nation’s caregivers and families.

Read more from Melissa on her blog: Bringing the Battle Home

via 31 Strategies for Living with Traumatic Brain Injury | BrainLine

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