Beating The Stigma of Mental Health

Check Out Our Radio Show from today for

Brain Injury Awareness Month.

Brain Injury Radio Recovery Now – with Caren Robinson and Kim Justus, sponsored by the TBI Network.

(click Title to right) Beating The Stigma of Mental Health

Check out our collection of other Radio Shows here as well:

Publications, Radio, and Outreach

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you

5 Important Brain Injury Recovery Steps

HOPE TBI Podcast
Brain Injury Recovery Steps

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

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

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

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

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

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

After reading all this, the question presents itself as,

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

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

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

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

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Three Years Today – Rebirthday Anniversary

happy-3rd-anniversaryI have been thinking about what to write today, January 4, 2017 for about a month now.  Here I sit trying to think of how to form the words that swim in my mind and express them in a way that makes sense to anyone else but me.

Today marks an important landmark.  A valuable piece of history worth honoring.  Today marks the 3rd year Re-Birthday Anniversary for Austin (my son) and I since the wreck where I became a survivor of a Polytrauma and TBI and my son seemed to have escaped physically unscathed by traumatized still the same.  We continue our journey still today. We both have come so far in 3 years.  I myself have met many goals, yet miles to go before I sleep….soundly that is *smiles*.

It has been an extraordinarily long journey through this whole recovery process….and still is. I needed an outlet. I needed to learn, to teach others what I had learned the hard way so they didn’t have to work so hard, to understand myself, to hopefully allows me to heal.

This page at posthope is strictly my medical story as it has unfolded and continues to unfold.  It is fantastic and I need to make an effort to get here more often.  I went through a round of blah there for a while.

I know though that I love helping people, I am just not able to do it in the way that I used to. I started a personal blog, which was so disjointed I couldn’t find anything when I wanted to, so with the help of my tech savvy husband he taught me how to use a very user friendly program where we changed the blog to a website so it was more organized.  This was very helpful and allowed me to find things easier.  The website is a work in progress that allows me to heal and help others.  I want to help other survivors cope, or caregivers/healthcare providers maybe try to understand what it has been like for our family so they do not feel so alone, or so they can develop different ways of doing things, of helping, of surviving.

HOPE was a word my mom hung up for me when I was in the hospital shortly after the wreck. I found myself so focused on that word that sometimes, all I could do was stare at it to get me through the day. I am unaware of the time frame that was wrapped around this. However, my memory makes it feel like it was a long time.

As time progressed it became the word I would include in my meditations, my prayers, and my self-talk to keep moving forward and never give up. To me HOPE became a symbol and acronym for “Hold On – Pain Ends”. The pain never seemed to end though and so this seemed completely unrealistic to me and not something I could honestly uphold. I struggled to think of something that would help me remember to never give up HOPE.

I also wanted to have HOPE represent my experience with all the medical providers, insurance processes, and developments and knowledge we had either been blessed or seemingly cursed with. I wanted to represent my journey as an ongoing recovery process, as that is exactly what it is. Days led to weeks, weeks to months and soon it came to me one day as I was in enormous pain that some of these providers were actually trying to help me gain my independence back and I was fighting full force to gain back what I felt I had lost. I needed so badly to excel…to move forward and move on with my life.

So was created ” HOPE TBI”

Help One Person Excel – To Be Independent

Hence this site was innocently started, and continues to evolve as I continue to as well.  I also now share other people’s stories as well as it is very healing to have a voice in some form and not feel so alone in a situation where you are surely to lose life as you once knew it….lose family….lose friends….as you adjust to your “new Normal”.  The folks that do decide to stick around…they feel alone too.  Their commitment to you causes their supports to move on with life while they remain with you PERPETUALLY FROZEN (look for this as a new post title soon).

This existence is not for the faint of heart.  It is not for the weak.  It is not easy.  I feel gratitude though for my life.  Grief and gratitude are constant bedfellows that have learned to coincide with each other.

Today I am reminded to reflect on not only all that was, but all that is, and HOPE for all that will be.  January 4, 2014 I was born again.  No, not in a religious sense.  However, I continue to experience a metamorphosis of epic proportions.  I continue to strive to embrace my “new normals” and function to the highest levels possible.  Thank you to all who have stood by me, believed in me and advocated for me.  Thank you for those who cared for myself, for my son, for the other driver (Greta) and made waking up each day seem possible.

My medical story

happy-rebirth-day

My Life – The Ultimate Cul De Sac

9b9089ac-5a2c-4bf5-a5c2-3ac1c36b89eaMy life has been enormously eventful since my last post.  There is a lot to catch you all up on.  Many days have passed.  I sat here staring at this screen trying to decide what to write, how to tell what I was going through, what I was feeling, thinking, experiencing.  The words just weren’t there.  It felt redundant and repetitive.

I thought…really Caren, who really reads this anyways?  What is the purpose of writing and posting, and keeping this going.   It is something I pondered for a long time.  I mean here I am back from the brink of death, more than once even and what can I offer my family, my friends, those who follow these posts, those who may come here to see how things are going?  I can pretend to be positive and progressive and optimistic…but the reality is – I have been depressed. Feeling overwhelmed.  Grateful, yet in many ways disappointed.  Yet, in other ways completely neutral perhaps even apathetic.

What was this numb feeling?  This path that took me down a side road with various cul de sacs that made me feel like I was disappearing within myself.  The reality that with improvements and increased abilities which are uplifting and exciting….there also comes the awareness that once I feel I get to the end of one dead end road I am forced to turn around and head back out to the main road of my life and face the realities of my limitations and seeming roadblocks that prevent me from moving on.

This.  This here is where I find myself drawn back to. Writing, sharing, purging. Giving what I have learned to the Universe beyond me.  Hoping I make a difference in some small way.

Each day is a reflection of improvement and as I look in the rearview mirror of my body, I see the rubble.  I feel the dings and dents it has left on me. I have been rebuilt in a lot of ways.  Though I have a few misses here and there and everywhere – I am also looking at the road ahead and where it can take me.  I try to avoid those emotional cul de sacs that pull me off of my path in various ways.

So here I am.  Facing the inevitable.  Facing my own mortality with each spasm, bump and grind.  Facing the future with uncertainty and grateful….ultimately….that I am here to continue this journey.

This is my life.  My new normals.  Yet at which point do they stop being “new normals” and just are who I have been becoming the last nearly 3 years.  This is my life. My life is not based on imaginary twists and turns.  My life is based on a True Story.  My life…the ultimate Cul De Sac.

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Site Owner – Caren Robinson

Hello there. I am a polytrauma and TBI survivor. I acquired mine from a wreck (head on collision) where my seatbelt failed and I was ejected (see Frequently Asked Questions page for more details).

I for a long time, felt it wasn’t important to “show” a picture of who I was.  I have gotten lots of requests for this though. I realize people want to see a “real” person. I wanted and still want… the site to be something that could be relatable regardless of what a person looks like….because after all…TBI is often invisible. So are most bodily trauma’s once the bones heal. Yet this is NOT the end of the healing process.

 This website is a growing passion for me with the more I advocate for myself, learn about myself, and learn about others experiences. This website is an outlet for my continued healing, rehabilitation processes, and a way to share what I have learned with others.  Helping One Person Excel I truly believe…begins with who I see in the mirror each day – Me.

To Be Independent is always the goal….yet that comes with a lot of dimensions and levels of intricate obstacles.  I hope that you find something in the pages of this site that help you, or someone you know.

If you’d like to share your story, or offer a guest blogging post …that would be amazing. Your story matters. Are you a Survivor, Caregiver,  Family Member, Healthcare Provider, Friend, Employer, Co-worker?  Whether the person is living or deceased…their story still matters.

Feel free to ask me questions in comments below or in email at hopetbi4ever@gmail.com I will answer as honestly and as directly as possible.