To evaluate the efficacy of adapted cognitive behavioral therapy (CBT) for sleep disturbance and fatigue in individuals with traumatic brain injury (TBI).
This study represents the first step of a knowledge translation initiative to support the implementation of best practices in cognitive rehabilitation post-acquired brain injury (ABI). The objective was to identify rehabilitation teams’ priorities regarding the implementation of best practices in cognitive rehabilitation, as well as the factors influencing decision-making processes about implementation.
Spasticity is commonly encountered clinically, and always affects patients’ motor ability and capacity for self-care which necessitates intervention. At present, numerous methods have been proposed with varying effects. Many reports show that the most effective method is to inject botulinum toxin, type A (BTX-A) into the spasming muscles, but the doses are different. The guidline of BTX-A injection in Chinese adults is restricted to 600 IU each time within 3 months. In this article, we treated two brain injury patients with severe regional spasticity with overdose of China-making BTX-A whose trademark is HengLi. The treatment improved spasticity and with little adverse effects. We therefore conclude that overdoses of BTX-A could also be safe and more efficient used in some patients who are showing severe spasticity of limb muscles, but it should be vary with each individual and a large sample size trial is needed for a further confirmation.
Spasticity often occurs after brain injury and always affects the motor ability and other function of the patient, thereby necessitating intervention in some cases. At present, the most effective method is injection of BTX-A in the spasming muscles. However, there is no unified guideline for the injection doses , the highest dosage for a single injection is less than 600 IU in Chinese guideline. So the most usage dose of BTX-A which injected to the spastic muscles of patient, was always 100-500 IU per time of per patient in our clinical work days, and sometimes it seems to take insufficient effects during a period of 2 weeks, the effect of BTA-A even last for more than 3 months.
So in patients with extensive or severe muscle spasm we decided to increase the dose of BTX-A. Although the halflethal dose of BTX-A is 40 IU/kg of body weight, which implies that a dose of BTX-A over 600 IU is safe, even a larger dose might be safe enough, but it is not confirmed yet, only few trials of small sample has been published, and the doses are less than that we used . Thus, we tried administering higher BTX-A doses in two patients who had developed a severe regional spasticity after brain injury. To our knowledge, none of this kind of reports has been published yet.
This study was conducted in accordance with the declaration of Helsinki, and it was conducted with approval from the Ethics Committee of the affiliated hospital of Qingdao University. Written informed consents were obtained from the participants. All procedures were performed with the consent of the patients and their family members.
A 57-year-old man was admitted because of sudden glossolalia with choking and coughing while drinking, who was also unable to walk and swallow, had an over 10 years history of high blood pressure, but irregular use of antihypertensive agents. He was carried to our hospital for further rehabilitation after a preliminary treatment in a local hospital. Physical examination (PE) at admittance: BP 148/86 mmHg. The systolic pressure was a little higher, and his heart rate, rhythm and both the lungs were heard normal.
Nervous system examination (NSE): Although consciously, but the patient was anepia, depressed, and a little uncooperative on checking. His right nasolabial groove was relatively shallower, and poor tongue controlling. 0-1 grade muscle strength on his right side, and 3-4 grade on the left, increased muscle tone, and hyperactive tendon reflex, Modified Ashworth Scales (MAS) of both sides are range from 1+ to 2 grade. Right Babinski’s sign was positive (+), but the left was doubtful positive (±). Thus the patient was diagnosed as brain stem infarction. He was treated by kinesitherapy (occupational and physical training), and swallowing disorder treatment. After 2 weeks of rehabilitation, his sitting balance reached grade 2; He could stand up from bed with one person’s assistance, but could not take a step. He experienced difficulty in lifting his feet and obvious spasticity of his right limbs. His MAS for left elbow flexion muscle, right hamstring, and right triceps surae was grade 2, whereas his left triceps surae was grade 1+. After taking Tizanidine (an oral antispasmodic drug) for about one month, with the dose gradually increasing from 6 mg/d to 12 mg/d. However, there was appeared some unexpected symptoms, such as dizziness and/or sleepiness .
Thus we decided to administer a local injection of megadose of BTX-A in the severe spasming limb muscles. The right upper flexor muscles and the right lower limb were injected with 250 IU and 450 IU, respectively. We chose 5 muscles as the targets for injection:
Posterior tibial muscle
And/or flexor digitorum longus
We used surface electrodes to detect the most contracted and sensitive parts of the muscles, marked on the surface then inserted needle electrodes deeply into the muscle to search for the appropriate motor points. Drug preparation: 100 U BTX-A was diluted with 2 ml normal saline to a final concentration of 50 U/ml. 4-6 injection points for a large muscle and 1-2 for small muscles were selected; each point injected 0.5-1 ml (25-50 U) BTX-A. After 4-10 days, the tone of the injected muscles was decreased, and gradually the patient could also stand and take steps in a stable condition. Two weeks to 3 months after injection both the patient’s Modified Ashworth Scale (MAS) and independent functional walking ability improved significantly, except a short period of mild weakness of muscle strength, there is no adverse effect occurred.
A 48-year old male was admitted to ICU 2 months after multiple traumatic injuries during a traffic accident. PE: Clearminded and spoke fluently, but high-level intelligence was impaired, especially the memory and orientation ability, and both of his eyes had limited abduction, hypopsia of counting fingers at a 60 cm distance. The muscle forces for both the upper limbs were grade 4 (MMT), moving with slight fibrillation. The proximal muscle force of the left leg was grade 2, whereas the distal level was 0. The right lower limb proximal muscle force was grade 1 and the distal was grade 0, with increased muscle tone of MAS grade, for the bilateral quadriceps were level 3, and the bilateral adductors were level 2-3. Magnetic resonance imaging (MRI) showed changes after the traumatic brain injury, including hydrocephalus. Thus the final diagnosis of the patient was “Brain injury, Multiple fractured ribs, Left femur fracture, and Acute suppurative myelitis”.
After routine rehabilitation therapy for 3 months, the patient’s sitting balance was restored to level 2. He could stand up and sit down with assistance. He could stand but could not move with walking aid. The bilateral iliopsoas muscle forces were 2-3 level. He could walk 3-5 meters on flat ground with the use of bandages and support from two persons. His hips showed obvious bilateral adduction leading to an atypical scissors gait, which made knee flexion and sitting difficult. He was given a little dose of Tizanidine firstly, however, Tizanidine administration was rapidly terminated because of its adverse effects, such as lethargy, low blood pressure . BTX-A injection was then administered to his bilateral adductor muscles and quadriceps femoris at a final dose of 350 U each. The dilution and injection methods were the same as those described in Case 1. After 3-7 days of injection, we evaluated the patients’ lower limb muscles spasm degree . The MAS was improved significantly, and the grade of functional walking ability improved at 2 and 4 weeks respectively after the injection, lasting more than 3 months.
BTX-A has been used to treat muscle tension disease for more than 50 years, and it has been widely applied by now [5–10]. At present, BTX-A can be made in several countries including China. The commercial name of Chinese BTX-A is HengLi, each vial contents 100 U. BTX blocks the physiological function of cholinergic nerve conduction, especially at the muscle-nerve joints, thus causing voluntary muscle relaxation. BTX-A is one of the most toxic substances in the world. However, after nearly 50 years of clinical application, the safety of BTX-A has been fully demonstrated . A halflethal dose of mankind is 40 IU/kg, but with a maximum permissible dose of 600 U being the Chinese domestic expert consensus in 2010. As a result, repeated injections may cause immune complex diseases, so repeated BTX-A injection within 3 months is prohibited, but repeated injections have been reported in a short term within 1 week. Repeated injection in a short term is not well understood, and therefore, we do not advocate this approach.
We report two cases with muscle spasms after brain injury, who were treated by injecting BTX-A. Both the injection doses exceed the maximum dose of the Expert Consensus but were far from the median lethal dose. In both cases, no adverse reactions occurred, and the treatment helped achieving better clinical effects than the alternatives, similar to that reported in previous studies [12–14]. Overdosage of BTX-A can be more efficacy and safe enough, therefore, in our further clinical study, according to the individual need and economic characteristics of the patient, we should reasonably and individually adjust the doses of BTX-A to achieve the best therapeutic effect and more beneficial to the patients’ self-care ability.
To evaluate the efficacy of adapted cognitive behavioral therapy (CBT) for sleep disturbance and fatigue in individuals with traumatic brain injury (TBI).
Parallel 2-group randomized controlled trial.
Adults (N=24) with history of TBI and clinically significant sleep and/or fatigue complaints were randomly allocated to an 8-session adapted CBT intervention or a treatment as usual (TAU) condition.
Cognitive behavior therapy.
The primary outcome was the Pittsburgh Sleep Quality Index (PSQI) posttreatment and at 2-month follow-up. Secondary measures included the Insomnia Severity Index, Fatigue Severity Scale, Brief Fatigue Inventory (BFI), Epworth Sleepiness Scale, and Hospital Anxiety and Depression Scale.
At follow-up, CBT recipients reported better sleep quality than those receiving TAU (PSQI mean difference, 4.85; 95% confidence interval [CI], 2.56–7.14). Daily fatigue levels were significantly reduced in the CBT group (BFI difference, 1.54; 95% CI, 0.66–2.42). Secondary improvements were significant for depression. Large within-group effect sizes were evident across measures (Hedges g=1.14–1.93), with maintenance of gains 2 months after therapy cessation.
Adapted CBT produced greater and sustained improvements in sleep, daily fatigue levels, and depression compared with TAU. These pilot findings suggest that CBT is a promising treatment for sleep disturbance and fatigue after TBI.
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Muscle spasticity is a positive symptom after stroke and traumatic brain injury. Botulinum toxin type A (BoNT-A) injection is widely used for treating post stroke and traumatic brain injury spasticity. This study aimed to evaluate efficacy and safety of BoNT-A for upper limb spasticity after stroke and traumatic brain injury and investigate reliability and conclusiveness of available evidence for BoNT-A intervention.
We searched electronic databases from inception to September 10 of 2016. Randomized controlled trials comparing the effectiveness between BoNT-A and placebo in stroke or traumatic brain injury adults with upper limb spasticity were included. Reliability and conclusiveness of the available evidence were examined with trial sequential analysis.
From 489 citations identified, 22 studies were included, reporting results for 1804 participants. A statistically significant decrease of muscle tone was observed at each time point after BoNT-A injection compared to placebo (SMD at week 4=-0.98, 95% CI: -1.28 to -0.68; I2=66%, P=0.004; SMD at week 6=-0.85, 95% CI: -1.11 to -0.59, I2=1.2%, P=0.409; SMD at week 8=-0.87, 95% CI: -1.15 to -0.6, I2=0%, P=0.713; SMD at week 12=-0.67, 95% CI: -0.88 to -0.46, I2=0%, P=0.896; and SMD over week 12=-0.73, 95% CI: -1.21 to -0.24, I2=63.5%, P=0.065).Trial sequential analysis showed that as of year 2004 sufficient evidence had been accrued to show significant benefit of BoNT-A four weeks after injection over placebo control. BoNT-A treatment also significantly reduced Disability Assessment Scale Score than placebo at 4, 6 and 12-week follow-up period (WMD=-0.33, 95% CI: -0.63 to -0.03, I2=60%, P=0.114; WMD=-0.54, 95% CI: -0.74 to -0.33, I2= 0%, P=0.596 and WMD=-0.3, 95% CI: -0.45 to -0.14, I2=0%, P=0.426 respectively), and significantly increased patients’ global assessment score at week 4 and 6 after injection (SMD=0.56, 95% CI: 0.28 to 0.83; I2=0%, P=0.681 and SMD=1.11, 95% CI: 0.4 to 1.77; I2=72.8%, P=0.025 respectively). No statistical difference was observed in the frequency of adverse events between BoNT-A and placebo group (RR=1.36, 95% CI [0.82, 2.27]; I2=0%, P=0.619).
As compared with placebo, BoNT-A injections have beneficial effects with improved muscle tone and well-tolerated treatment for patients with upper limb spasticity post stroke or traumatic brain injury.
Note: This content was updated in February 2017. Some of the apps from the original post are still listed; however, we’ve found many more that can be extremely helpful…
We know what you’re thinking: don’t people with a traumatic brain injury have enough to relearn without training in new smart phone technology? Our answer: Yes and no. Yes, absolutely, which is why the apps we recommend are meant to complement existing therapies and programming. No, because the more frequently the mind is exercised, the greater the possibility of neuroplasticity rewiring the brain to be more functional in the future.
Technology today is working harder than ever to improve our lives. There are literally hundreds of apps for people with brain injuries and similar problems. We have selected these apps because they build on the day-to-day needs of an individual living with a TBI. We focused our research on these areas:
Specifically, these apps help clients work on the following: short-term memory loss, communication/socialization problems, anxiety, behavioral and organization issues.
Free with $1.99 Upgrade Available (iOS)
(Android Counterpart: Lists Alarmed!)
Alarmed augments short-term memory while the user is rebuilding his or her own. A productivity app for the masses, people with traumatic brain injuries can use Alarmed to create multiple reminders with unique, memorable tones for each task. Reminders can be customized with a “To Do” list and send multiple email reminders/updates. This app also comes with a timer to assist in programming.
Cozi Family Organizer
Free (iOS & Android)
Families can stay in sync on multiple platforms using this app that combines a shared calendar, shopping and “To Do” lists. With everyone on the same page, organizational skills are enhanced and frustration diminished.
Free (iOS & Android)
EverNote helps improve memory, organizational skills and even creativity by syncing ideas on multiple devices. The user can take notes, capture photos, create “To Do” lists and record voice reminders. The searchability function can be a tremendous boon for those with short-term memory loss.
Productive Habits and Daily Goals Tracker
Free with In-App Purchases (iOS)
(Android Counterpart: Habitizer)
This app helps users develop positive habits in their lives by keeping them organized, tracking their progress and maintaining motivation. It allows users to set the habits they want to develop and receive reminders when tasks are to be completed. Users can color code these based on the priority or category of the habit. This app can also allow a therapist or caregiver to set priority levels for each task.
Free with In-App Purchases (iOS)
(Android Counterpart: Luminosity)
Brain HQ tailors a training program for each persons’ unique mind. Therapeutic exercises are personalized based on performance and can help improve cognitive skills. Exercises are designed to improve attention, memory, people skills and navigation.
Brainscape – Smart Flashcards
Free to $9.99 with In-App Purchases (iOS & Android)
Pick a subject from geography to vocabulary-building and Brainscape has a set of smart digital flashcards. What makes these flashcards so smart? Besides being color-coded to aid recall, users are asked to indicate prior knowledge of the answers. Questions the user did not understand or answer correctly are repeated more frequently than those answered correctly.
Free for 30 Days (iOS & Android)
Constant Therapy is a speech therapy app for individuals who are looking to increase their cognitive abilities. This app is scientifically proven to improve speech, memory, cognition and comprehension skills. While this app can’t take the place of therapy, it is a great way to augment existing treatment by completing progressively challenging tasks right from your very own phone.
Spaced Retrieval TherAppy
(Android Counterpart: Spaced Retrieval)
Spaced Retrieval is a scientifically-proven way of improving recall of names, facts, the routines of several people and more. People with brain injuries can rehearse memory skills by recalling an answer over expanding intervals of time (1, 2, 4 or 8 minutes) that helps to cement the information in their memories. Please note: this app is not intended for use without therapy.
$1.99 (iOS & Android)
For non-verbal clients, this app utilizes two large, color-coded buttons, green for “Yes” and red for “No”. When either button is pressed, the app vocalizes the client’s decision. This is a wonderful tool to help those with a brain injury or speech problem communicate without a struggle.
Free (iOS &Android)
Audible is for individuals who love a good book but are having difficulty reading, retaining information or who simply enjoy closing their eyes and having a good book read to them. With Audible, users do not have to give up their literary passions, they just have to listen. This app is also compatible with Amazon, so books can be downloaded right from your account.
Clear Record Premium
Price ranges from $.99 to $1.99 (iOS) depending on upgrades
(Android Counterpart: AndRecord)
This audio recording app allows the user to record conversations in practically any environment and play it back at the speed and volume of their choosing. Unlike many other voice-recording apps, Clear Record Premium filters out ambient sound to ensure pitch and clear voices.
Free (iOS & Android)
Speak and this app will recognize the users voice and transcribe what they say into text messages, emails and even update social media. Dragon Dictation is a perfect mass media communication tool for anyone with a physical limitation.
Type ‘n Talk
(Android Counterpart: Type and Speak)
This app is incredibly useful for non-verbal individuals and other individuals who have difficulty with speech due to physical limitations. Type ‘n Talk allows the user to type what they need to say and their verbalized audio will play through whatever device is being used. This app also allows the user to copy text from websites and messages and provides a variety of languages.
Pocket Verbal Ability
Free (iOS & Android)
Users can increase their vocabulary with this user-friendly vocabulary app. Pocket Verbal Ability asks questions that will help prepare for job interviews, exams, and day-to-day life.
(Android Counterpart: Talkingtiles)
This app includes the most common topics in the functional social skills system for people with brain injuries to model for appropriateness. Topics include the following: meeting/greeting people, taking responsibility, being polite, joining others in groups, apologizing/excusing self, following directions and handling criticism. Users watch a brief video of a person performing the correct behavior for the social situation and can then pattern their own behavior accordingly.
Free (iOS & Android)
For anyone who could use a time out to relax, Breathe2Relax has been proven to help mood stabilization and control anger and anxiety. Users should simply indicate their level of stress and follow the audio instructions to breathe their way back to serenity. Essentially, this app provides on-site audio diaphragmatic breathing exercises.
Free (iOS & Android)
WeFeel is a mental health app that users can use to track their emotions and monitor how they change over time. This app can help manage emotions by allowing the user to visualize their anger, fear, stress, etc and then offer coping strategies. With a subscription, a counselor, therapist or caregiver will be able to monitor the users recorded emotions in real time from their own smart phone.
In Case of Emergency
$1.99 (iOS & Android)
This app allows people to store their medical information in a single location that is convenient for medical personnel in the event of any urgent situation. This app can also use to locate the nearest hospital.
Since this is by no means an exhaustive list, we are always working to improve and add to it. We would love to hear from individuals with a traumatic brain injury and their physicians and caregivers about which apps they use.
There are some studies which showed neurofeedback therapy (NFT) can be effective in clients with traumatic brain injury (TBI) history. However, randomized controlled clinical trials are still needed for evaluation of this treatment as a standard option. This preliminary study was aimed to evaluate the effect of NFT on continuous attention (CA) and short-term memory (STM) of clients with moderate TBI using a randomized controlled clinical trial (RCT).
In this preliminary RCT, seventeen eligible patients with moderate TBI were randomly allocated in two intervention and control groups. All the patients were evaluated for CA and STM using the visual continuous attention test and Wechsler memory scale-4th edition (WMS-IV) test, respectively, both at the time of inclusion to the project and four weeks later. The intervention group participated in 20 sessions of NFT through the first four weeks. Conversely, the control group participated in the same NF sessions from the fifth week to eighth week of the project.
Eight subjects in the intervention group and five subjects in the control group completed the study. The mean and standard deviation of participants’ age were (26.75±15.16) years and (27.60±8.17) years in experiment and control groups, respectively. All of the subjects were male. No significant improvement was observed in any variables of the visual continuous attention test and WMS-IV test between two groups (p≥0.05).
Based on our literature review, it seems that our study is the only study performed on the effect of NFT on TBI patients with control group. NFT has no effect on CA and STM in patients with moderate TBI. More RCTs with large sample sizes, more sessions of treatment, longer time of follow-up and different protocols are recommended.
Traumatic brain injury (TBI) means an injury to the brain that is caused by an external physical force. It is well known that TBI is an important cause of mortality and morbidity and it is reported that each year about 1.7 million people sustain a TBI in USA. Some of them die (about 50,000) and some other experience long-term disability (80,000 to 90,000).1; 2 ; 3 The severity of TBI can be categorized based on the Glasgow comma scale (GCS) at the time of injury as follows: mild (13-15), moderate (9-12) and severe (<9).4 TBI usually affect the brain function such as cognitive status, executive function, memory, data processing, language skills and attention.5 It has heterogeneous aspects and based on the injury location and type. It can have different presentations. Hence it is considered as a difficult one to treat.6
The brain plasticity could help it in rehabilitation phase to restore its normal function after any trauma or disease. But the amount of this ability is poorly understood. Some studies approved that neurofeedback therapy (NFT) can promote neuroplasticity.7 In the method of neurofeedback (NF), as a non-pharmacological intervention, the feedback to brain waves which are representative of subconscious neural activity can be observed by the client and then he/she will be able to control and change them.8 ; 9 There are some evidences that show NFT can be useful in some other diseases like Obsessive-compulsive disorder,10 attention-deficit/hyperactivity disorder11 and also refractory epilepsy.12 There are also some published studies about the effect of NFT on patients with TBI. Surmeli in 2007 investigated the effect of NFT on 24 patients with mild TBI and reported that NFT can result in significant improvement in test of variables of attention, beck depression inventory and minnesota multiphasic personality inventory.13 In a study in 2014, with evaluation of two patients with moderate head injury and without control group, it is reported that electroencephalogram biofeedback can lead to increase the cognitive scores and improve the concussion symptoms and finally concluded that NFT can be effective on the changes in the structural and functional connectivity among patients with moderate TBI.14
Although these published papers reported a positive effect of NFT on the TBI patients, we have not enough data about the standard treatment protocol with NF, and literature still needs more original studies like randomized controlled clinical trial to suggest NF as a treatment option among patients with TBI regarding the two following functions of cognitive status: short-term memory (STM) and continuous attention (CA).6
In this preliminary study, we tried to evaluate the effect of NFT on CA and STM of patients with moderate TBI using a randomized controlled clinical trial. […]
I’m ready to take a step back, to take time to contemplate, to reflect and to finally tell the truth.
I’m finally ready to put down my book, which has been all too consuming. To discretely slam or just close the pages, consciously smothering the content. Purposely, shutting out all the noise, the battering, the heartache, the horror, the never ending memories and the trauma of living with brain injury.
Yes, my son was one of the lucky ones. He survived.
But at what costs?
Over the years, I have read many, many books about brain injury, most trying to impart a positive twist to its horrors. And, even in the midst of my own chaos, I surprised myself by writing my own memoir which a publisher actually printed. Like other authors, I tried to write to give hope to others, which at the time was my intent. But my intention now is to write a final chapter without an audience in mind. With no anticipation that anyone will read it so that I can give myself permission to just write sincerely with no expectations to always have to be the strong one or to always have to be the one to try to see and share the silver lining amidst the tragedies.
I want to be unguarded. Truthful. Real.
There is no silver lining.
Yes, in my memoir, I wrote about my son Paul’s miraculous recovery from a traumatic brain injury. Do not get me wrong, it is an amazing story and he is an incredible being and will always be my hero. But in my book, I only wrote about his first year of recovery and there have been many, many more years. And there have been other thoughts and real struggles that have never put down on paper.
Most people, publishers, and readers only want to hear the “happy ending” parts to a survivor’s story, grasping for some kind of hope that their loved one could possibly — with determination and perseverance — conquer, too. So that is what I wrote about, partly because I needed that glimmer of hope myself. It has been almost five years since my books have been published, 15 years since Paul’s bike and the SUV collided. Did I really just type “collided”? I need to edit that to read: smashed, shattered, and crashed into our lives, changing everything forever. Wait, I need to also scratch out everything because I just looked in the dictionary and it say’s “everything” means the whole thing. Obviously, Paul is not a thing, but brain injury has changed the core of who he is and was and what his future could have been. The impact from brain trauma has altered Paul and tainted our entire family, derailing the “happily living after” course we had been on.
People often ask me if it was therapeutic for me to write about our family’s TBI “journey.” I usually answer with my standard comment, “Yes, very healing!” And again, I usually promptly answer when others asked, “How are you, Paul, and your family?” and without hesitation I respond, “Fine thank you and you?”
I lie, often.
The reality of reliving, writing, editing and bringing visualizations and memories to life and ink to paper has depleted my spirit. And man, what about all the caregiving and caregiving and caregiving? Caregiving is exhausting! We have had to readjust to Paul’s needs as his situation has changed, which it has many times. There was the immediate aftermath of injury in the intensive care unit, the coma, the uncertainty of life and death. Then later, in the hospital, trying to grasp all that was happening, then the prolonged stay in a rehab setting not knowing if our son would ever walk or talk again. And then there was his return home when the list became even longer while monitoring his changing physical and emotional needs, cognitive issues and strategies, safety concerns, meal planning and preparation, medications, possible seizures, bathing, dressing, and personal care, structuring and planning activities, transporting to and from therapies, dealing with adaptive equipment, moods and more and more and more. The caregiving continued with his e-v-e-n-t-u-a-l reintegration back into the community and school trying to set up a special program to meet all his needs and later attending an unusual higher education program that would focus also on life skills and then working with so many organizations to help him find possible opportunities for employment. And the long-term issues of constantly advocating and advocating and advocating, seeking out possible resources for Paul and our family. And the finances, and especially all the paperwork and legal and insurance issues. And as anyone who is the midst of brain injury knows, the list is endless — and that’s only the list for taking care of the injured person. What about taking care of other family members or siblings and their activities? What about the emotional needs? What about the basics of daily living such as shopping, cooking, laundry, childcare, house work and yard work? And what about me? What about my needs and comforts, my job, my friends, my marriage, my emotional and physical well being?
Well, the reality is, I have written books, articles, and speeches. I have given presentations trying to bring awareness to this devastating injury, trying to put that optimistic twist to every piece that I write, every presentation that I give. But in doing so, I have stifled real thoughts, real emotions, and I have kept my secrets to myself.
At times, I have become isolated from others, so it can be awkward when I feel entrapped by friends or acquaintances as they sometimes persist on asking curious questions, when all the while I’m secretly thinking that they could never, ever, ever possibly understand the magnitude of the real answers. Besides, they just think I’m nuts anyway for having eight children. Yes, eight. (Maybe I am crazy?) But today I’m ready to take a step back, to take a moment to contemplate, to reflect and to finally tell the truth. It’s time for me to not sugarcoat brain injuries, to not pretend that this whole experience has not unhinged me or my husband and our children. How I wish that I could write or talk about something else, maybe a mystery novel or a love story or a comedy. I have not really laughed for a long, long time despite all the small and big victories we have fought for. The numbness that comes with trauma coats everything.
So, here is the truth about brain injury from a mother’s point of view, my point of view.
People often ask how am I. I’m tired! Really, really tired. And like other TBI caregivers, I never thought I would ever end up in an ICU, or rehabilitation hospital, or have the need to attend a brain injury conference, let alone be a caregiver for my son Paul who sustained his injury almost 15 years ago, when a car struck him while he was riding his bike — without a helmet.
I’m also neurotic! Now, whenever I see a kid without a helmet on, I scream out my car window, “Wear a helmet, you idiot!” which usually sends the kid tumbling. Anyway… how am I? I guess I’m mad sometimes that Paul was not wearing a helmet and for bringing traumatic brain injury into our lives. I guess at times I also feel guilty. I feel guilty for feeling mad, guilty for not being able to protect my son, guilty that I can’t change what has happened, guilty that I miss our previous way of life when my children’s biggest concern for the day used to be whether they were going to play on a swing or eat a peanut butter sandwich. Guilty that I cannot help them or be fully present. Guilty that I don’t have time for myself and my friends, and I’m worried that my husband and I talk and have sex so infrequently; we have become distant, like strangers.
I guess if you ask me how I am, I could say I’m often preoccupied, stressed, and depressed. I could say that I had absolutely no idea when I took my wedding vows years and years ago that my husband and I would really have to live out the “better or worse part,” let alone think that we would have ever had eight children! If anyone had ever truly told me about the teenage years or that I’d be dealing with traumatic brain injury, I would have run from that alter in a heartbeat. But the reality is that my children are everything to me and I fear for their safety and their emotional, physical, spiritual, and mental well-being. I miss our family’s carefree days. I miss having fun. I’m also burdened by domestic chores — cleaning, carpooling, cooking. Boy, do I hate to cook, and the kids always know when the oven is on because the smoke alarm is usually blaring. And I hate that Paul had a brain injury! I get sad, really sad and grief-stricken sometimes to have had to mourn the loss of what could have been. I hate all the medical appointments and therapies, and that Paul has had to struggle so much, and that our family has had to endure an abundance of heartache. My heart hurts, and most days my mind does, too. I cannot comprehend all we have been through, all the changes. I cannot understand why some friends and extended family members have not educated themselves about TBI and distanced themselves from us.
How am I? I’m often confused by all the medical words, equipment, procedures, and often the lack of communication between us lay people and the professionals. I’m dumbfounded that I feel like I’m reinventing the wheel day after day to try to find help and resources for my son and my family. How am I? How am I really? At times, very lonely; caregiving can be isolating, demanding, never ending and really, really hard. Sometimes, I have a big pity party for myself. It’s usually while driving in my car when I’m alone. Sometimes I scream at the top of my lungs, “Why did this happen, why Paul, why our son, why our family?” and usually this feels really good, except when I’m stuck at a red light and I realize that I have forgotten to put my windows up. How am I? Numb. Some days I don’t want to get out of bed to face the day, to face the reality that traumatic brain injury happened to me, to my son, to our family.
I would be lying if I told anyone that I have never thought about buying a one-way ticket to Hawaii. I would be lying if I mentioned that we have lived through our son’s brain injury without any scars or battle wounds. And I would be lying if I admitted that I love all the endless caregiving.
I lie a lot. I write books, articles, and speeches, and I frequently encounter people in the brain injury world at conferences and hear of their struggles and accomplishments and the many, many “miracles” like Paul’s recovery. But mostly, I am suffocated with the sadness, the grief, and the hopelessness that these families and survivors have to try to cope with. It reminds me that I’m one of them. Yet I’m supposed to be the pillar, the expert, the one who has all the answers.
I have no answers. There are none.
There is no silver lining to brain injuries. Brain injury does not go away. And can I say that I also hate the word “plateau”? I hate all the clichés I have heard over the years and even at times have repeated: Time heals all wounds. You’ve come so far. You’re son/daughter is such a miracle/blessing. Your family is so amazing and an inspiration to us all. You’re so strong. Good always comes out of bad. There are lessons to be learned through every experience. God works in mysterious ways. You’re so lucky your son is verbal or ambulatory or does not look any different. Your marriage and family must be so strong to have survived the unthinkable!
I’m finally ready to put my book down and to stop writing, at least for now. I’m ready to discreetly slam, or just close the pages, consciously smothering the content and clichés, purposely shutting out all the noise, the battering, the heartache, the horror, the never ending memories and the trauma of living with brain injury.
Our son who is now 26 has moved out of our “one-horse town” and our old colonial home to reside in the big city. Despite lasting repercussions and deficits from his crash, it is now time for Paul to revel in all his hard work and write the next chapter to his own life.
And it is time for me to begin to give myself permission to heal and to live.
Written exclusively for BrainLine by Dixie Coskie. Dixie is an award winning author who is passionate about her roles as a mother of eight and an advocate for all children and the disabled. Her books and talks inspire others with the ultimate triumph of hope and love.
Read a clip from Dixie’s memoir, Unthinkable, here.
Click here to learn more about Dixie.
To identify and critically appraise the content, readability, accessibility and usability of websites providing information on cognitive rehabilitation for the families of adults with traumatic brain injury (TBI).
Design: Parallel group, randomized controlled trial with blinded outcome assessment.
Setting: General community.
Participants: A total of 153 caregivers (mean age = 49.7 years; 82% female; 54% spouses/partners, 35% parents) of persons with moderate to severe TBI who received acute and/or rehabilitation care at a level I trauma center. Eighty-two percent of participants were evaluated at 6-month follow-up.
Intervention: Individualized education and mentored problem-solving intervention focused on caregivers’ primary concerns delivered via up to 10 telephone calls at 2-week intervals.
Main Outcome Measures: Composite of Bakas Caregiving Outcomes Scale (BCOS) and Brief Symptom Inventory (BSI-18) at 6 months post-TBI survivor discharge. Secondary measures included the Brief COPE.
Results: Caregivers in the treatment arm scored higher on the BCOS-BSI composite (P = .032), with more active coping (P = .020) and less emotional venting (P = .028) as measured by the Brief COPE.
Conclusions: An individualized education and mentored problem-solving approach delivered via telephone in the first few months following community discharge of the TBI survivor resulted in better caregiver outcomes than usual care. Consideration should be given to using this approach to augment the limited support typically offered to caregivers.