SameYou

Neuropsychologist Dr Katherine Dawson writes about what she sees as the cornerstone of rehabilitation by supporting brain injury survivors and their families to establish hope and trust in a future when you don’t yet know what that future holds.

Our brain is made up of 86 billion neurons….

Whilst this may be an overwhelming number to make sense of, imagine a massive network of connecting roads – all transmitting and receiving information, enabling different parts of our brain to communicate with each other.

Injury disrupts some of these networks and dependent on the severity of the injury, small to large areas of the brain can be affected.

We know however, that with challenges and new activities, the brain can rewire and grow new connections and that is the basis of neuro rehab.

When is the right time for rehab?

In terms of providing education regarding injury and establishing good routines, I am a firm believer that something can always be done to promote recovery following injury, at whatever stage of an individual’s rehabilitation journey.

Priority goals

In terms of priority goals, establishing ‘brain healthy’ routines and habits is crucial and this can be done at any time. If we look at how the pandemic has made us all stop and think about our own health, the key is picking one area to work on (sleep, drinking enough water, physical exercise, diet) and gradually building up good routines. A weekly planner is a must and whilst to some this might feel like living a bit of an artificial life, it is the cornerstone of good neuro rehab as it supports us to learn by doing and can also compensate for memory difficulties.

It is also crucial individuals and families have a clear understanding of what has happened in their brains in terms of the injury as this leads to greater motivation to self-manage and increased feelings of control. It is also important to increase the family’s understanding of the nature of their loved one’s injury so they are able to anchor the problems they see onto ‘hidden’ changes in the brain.

Pacing

One of the biggest challenges after injury is getting the right ‘dosage’ of activity and rest. People either try to do too much too soon (sometimes because they desperately wish life would return to normal), and this leads to exhaustion, irritability and more fatigue.

Alternatively, for many people, when their mood is low and they are struggling with fatigue, a normal response can be to stop doing enjoyable activities, which can lead to feeling less motivated and energised and then fatigue can worsen.

It is important to spend time talking to individuals and their families about the resource-demand model. Basically, after an injury, the demands an individual is under significantly outweigh their resources and we need to work together to balance out the scales. Use of the weekly planner is crucial, as well as thinking about what makes life meaningful for individuals and their families as these values and roles are essentially the glue that holds us together.

Identity

With this in mind, it is important to think about identity. Following brain injury, in addition to physical difficulties, individuals and their families often experience a strong sense of loss around their identity, and trauma and injury often result in an individual’s world shrinking. Introducing activities that are linked to meaningful roles is therefore really important. It might be work around wanting to feel more like a parent again, or returning to physical exercise or learning a new skill. In a day, we recommend doing something that gives you a sense of achievement (so make a to do list and tick off several small tasks), do something in which you connect to someone else and also complete an enjoyable activity. When people are feeling really low, just doing something for 5 minutes can be a good rule of thumb and then it is up to you whether you stop or keep going. In addition, playing to strengths, setting small goals in which you experience a sense of success and gradually building up activities is key.

I have just written a book with 4 clients and their families and several members of the rehab team about adjusting to brain injury. One of the messages is that brain injury changes people yet doesn’t change people and there is always something of the person shining through. Supporting individuals and their families to establish hope and trust in a future when you don’t yet know what that future holds, in my opinion, is the cornerstone of rehab.

I had been experiencing what I would say was a very mild, dull headache for a few days. A bit like a hangover and I couldn’t shift it. I later found out I had suffered a severe ruptured aneurysm.

I had been experiencing what I would say was a very mild, dull headache for a few days. A bit like a hangover and I couldn’t shift it. After leaving my parents house with my baby I walked home, put him to bed, took two paracetamol, went to bed myself and tried to soothe my bed head with a warm flannel and an early night.

My son Drew woke me early with his baby chirps and as I came to I was aware I still had the pain in my head. I was mainly annoyed with the fact it was still there. I stretched out and yawned and as I did my ear popped. I had an intense shooting pain in my head. It didn’t subside. I just thought this is now a migraine and I’m gonna need someone to help with Drew. So I called my mum. My mum, like Emilia’s, has been by my side every second of my recovery and I always say she put on her superhero cape that day.

I went downstairs, unlocked the door and took two paracetamol again and wandered upstairs to get my flannel for my head. Mum came and I told her my head was really bad, then I retched over the side of the bed and passed out. I was taken to hospital where they discovered it was a severe ruptured aneurysm. I had a subarachnoid haemorrhage.

At first I was left to see what would happen. Then during the night I had a re-bleed. My husband who works at sea was called to come home. I couldn’t have my aneurysm coiled because of where it was so I had to have it clipped. My husband Scott was told this was the only option to save my life and even then there was only a 30% chance I would come out alive.

I had a huge part of my skull removed and the offending aneurysm was clipped. That bit of skull got chucked in the bin and I was left with a very unattractive half a head, which I had for over 6 months.

I eventually could breathe on my own, learned how to swallow again and had to learn how to talk and walk again.

I worked so hard in hospital rehab so I could get home to my boys. As soon as I could do stairs I could go home. I did stairs.

But home is where the hard work, frustration, fear and challenges really began. No one prepares you for this part. You or your family. It’s the most scared and alone time I felt.

Six months later I had surgery to replace the part of the skull removed. Terrifying! Head shaved again, scar opened again. Two weeks after surgery while I was having a bath, I suffered a seizure. This was unbelievably scary. I passed out but luckily my husband was home. He heard my splashing and lifted me out of the bath. Now I take anti seizure medication.

I have had seven plastic surgery operations over the past seven years to try and restore structure. I have faced many challenges but none bigger than becoming a mum to my son. I have worked so hard to get where I am.

It’s not just the physical. It’s the damage inside, not just the scaring to my brain but how it affects you as a person. “You’re back to normal now” is what some say. It’s misunderstood by so many and there is little support after leaving hospital. There is a need for more awareness so that everyone has a better understanding of what a person goes through after a brain injury - the symptoms are not all visible, as well as an urgent need for more support.

Many clinicians told Matt that most of the recovery from a TBI occurs within the first one year, and after that point his recovery would plateau such that his faculties would no longer improve. However, Matt has continued to see positive changes well beyond the first two years of recovery and today, over ten years on, still strives for continued improvements.

When I woke up alone on a cold hospital floor–the result of my intention to escape what I had thought was a nightmare–the first thing I realized was that my legs did not work like they used to. Screaming nurses swarmed to my attention, so I knew that something was wrong. The last thing I remembered was enjoying a fully functional and lazy Sunday, the final day of mid-winter break from my Senior year of high school. Apparently, months had gone by–the calendar on the wall already had the first few days of May crossed off.

The nightmare was real. There were things that I could not remember happening and there was no changing that, no matter how difficult that was for me to grasp. That moment, on the floor, is when I tell people I woke up from the coma, although my doctor would say differently. Two weeks prior, after following the simple command of “squeeze my finger,” I was declared “awake.”

That moment, on the floor, I had to accept that everyone around me was telling the truth when they said that I was in an accident. I had suffered a Traumatic Brain Injury (TBI).

Although I have no recollection of anything happening on that final day of my “first” life, I have spoken with many others over the years to rebuild a memory of how I got to my “second” life. What brought me to that moment, on the floor, was a tragic car accident after school one day.

My friend had mistaken the turn signal of an oncoming pick-up truck and then proceeded to turn left. Her little sedan was t-boned by the truck directly where I was sitting in the backseat. My body was thrown from side to side, causing my head to collide with both the window and the head of a fellow passenger. The collision resulted in a coup-contrecoup style TBI and left me in a deep coma. My three friends walked away with minor injuries.

In addition to being entirely unconscious (Glasgow Coma Scale of 3-4), I was not breathing, in decerebrate posturing, and in cardiac arrest. The team of first responders, most of whom volunteer firefighters, were responsible for performing CPR, intubating me, and administering epinephrine at the scene to jump-start my heart. Once I was stabilized, they alerted Mercy Flight of WNY to rapidly transport me to the TICU at Erie County Medical Center (ECMC). The brilliant attending neurosurgeon, Dr. Gregory Bennett MD, effectively mitigated the bleeding and swelling inside my brain, which was due to intracranial bleeding and an intraparenchymal contusion. The procedure helped prevent further brain damage from brain herniation and increased my chances of having a “good” outcome, or being able to live without constant care. The chances of that happening were about 1 in 10, according to prognostic models. But first I had to survive–a mere 20% likelihood. In the first week, my parents were advised that they may have to make a decision to remove me from life support in the near future.

Matt approximately 4 weeks after the accident.

However grim the prognosis, I survived the acute stages and a serious lung infection. I spent exactly three weeks in the TICU before I was stable enough to be transferred and admitted to the “Coma Stim” rehabilitation program under the outstanding care of my physiatrist, Dr. Gary Wang MD, PhD.

It would be another three weeks until I was officially declared awake.

MY RECOVERY PROCESS

Luckily, I had a network of resources around me to support my recovery. It would not be possible without the help of others. I had the knowledge of the medical community–including doctors, therapists, and nurses–and the love and support of my family and friends. But still, most importantly, I had to choose to recover first.

The recovery process began well before I was fully conscious of what was happening. Things started out very slowly so as to ease me out of the acute stage of care when I was unable to move, eat, or breathe on my own. At the beginning, my memories of this were very vague and dream-like so I relied on the help of others to reconstruct them. During this time, a Speech Language Pathologist (SLP) worked with me to see if I could identify who my family members were in photographs, discern tastes and smells, perform basic reading and language tasks, and solve elementary mathematical functions to assess my status following my severe TBI. I am sure that I felt a little annoyed by the ease of these questions. I was also unable to speak at the time, and this was probably for the best–agitation is common during the “waking” process, so my irritated thoughts could not be translated into harsh, pointed commentary.

I strongly remember being unable to speak after “waking up.” I remember the frustration when inquiries and requests would form in my head but I was unable to control the seemingly natural motor function of speech. For short responses, I utilized one finger for “yes” and two fingers for “no.” This was great for simple questions without the use of multiple options (e.g. people would sometimes ask me if I wanted “this or that”–like, seriously?). For more complex language, I was fortunate enough to be able to manually spell out words on a laminated sheet containing the alphabet, known as a letter board. This made communication a longer, more difficult process but it was one which allowed me much greater flexibility in expressing myself.

Using this letter board in lieu of oral speech was a great way to show that I had retained all of my memories and cognitive skills, no matter how much more difficult it was to slowly spell out words and hope the person receiving the request could understand. I was able to communicate my questions and what I recalled in complete statements. In one memory of using this letter board, I had spelled out the word “intrinsic” and my Mom asked what that word meant. I still wonder in what context I chose to use that word and whether it was merely to “show off.”

I also had friends visit who were in AP Calculus with me at the time and they would pose simple derivative calculations for me to solve (“What is the first derivative of 3x?” they would ask, and I would hold up three fingers to answer).

Before I could even regain the ability to stand up and move independently, the Physical Therapists needed to help me recover normal muscle function. Being in a coma for two months takes a significant toll on your body–you experience abnormal posturing during the critical stages and muscle atrophy from being unconscious and bedridden. In order to ever be able to function normally again, they first had to utilize serial casting to hold my muscles in the correct position for several days to “force” them back to normal tone. This was an extremely painful process and often required multiple therapists alongside the doctor to allow the cast to set in the correct position. In fact, at the time of “waking up” and trying to “escape,” I had casts on both legs and one arm.

In Occupational Therapy, the focus was on relearning how to work with my hands and execute self-care functions. These “natural” tasks were daily functions that I never previously thought about doing and things that I did not have difficulty with just a few months prior.

Through various adaptations and workarounds to help me rethink these skills, I was able to recover many daily tasks: dressing myself, brushing my teeth, using silverware, writing with a pen, using a computer keyboard, and stacking or sorting objects. The list is endless.

These times were very difficult for me. The physical and emotional pains I felt during recovery were deep and unfamiliar. My friends who would visit were all still living the last days of high school, going to prom, and getting ready to attend college in the fall. I had already been accepted to Canisius College and I was supposed to live on campus and begin the honors program but that would have to be put on hold. At the time, I could not really grasp the challenges I might have to face in the future; in hindsight, I am grateful that I had so many friends and family members visiting me every day, supporting me along the way. Many people do not have such support and that is something that I did not really put into perspective while I was in the hospital. Some patients rarely had visitors. If they were unable to advocate for proper care for themselves, who would?

I had to choose to pursue a full recovery. I had to disregard the poor prognosis given to me that I would likely never be able to return to school or function as an independent adult again.

Luckily, I was never an athlete so I was not that bothered by the dystonia, apraxia, or the prospect of not being able to play sports ever again. (Honestly, I was actually relieved that I now had an excuse). My focus remained on being able to return to school, get a college degree, and establish a career. But before I could do any of that, I had to relearn how to walk again–so that I could walk across the stage at my high school graduation.

The first step was standing up for a prolonged time, which was often very painful. After I could do this proficiently again, I was granted the use of a modified walker with two therapists assisting me. The walker was designed to support my left arm and shoulder, which still required some therapy to regain normal function. After I was allowed to take the walker back to my hospital room, I walked as often as I could to rebuild my strength. Having the support of my friends there to walk around the hospital with me each day was another point of good fortune because, after a few weeks, I did not need the walker at all. I was ready to go home.

LEAVING HOSPITAL

After 103 days in the hospital, roughly two months of which I had no self-care independence, I walked out of the hospital without the assistance of any medical device. My doctor pushed me in a wheelchair to the front door and–to honor my special request–let me walk out of the building, on my own two feet.

Two weeks after that, I walked across the stage at my high school graduation to a boisterous standing ovation.

From there, I continued outpatient therapies, as were covered by my health insurance, for about three more months. After this, I was to the point at which clinicians considered my function satisfactory (although I was far from where I am today). I also started school at Erie Community College (ECC), part-time, in the fall following my injury to continue my recovery and ensure there were no academic problems.

I returned to my part-time job at Old Navy about eight months after my injury. This was a good experience for me to get back into doing something (and to have my first paid fifteen-minute break in a long time). I started back as a cashier, performing the same work I had been doing for two years prior. It did not feel the same though. It was still very difficult for me to speak clearly and handle the other duties of being a cashier–fold and place the customer’s purchase into a bag, as well as handle any cash transactions. I remember I had one customer ask me bluntly “What’s wrong with you?” because I was having difficulty bagging her purchase. Matter-of-factly, I told her exactly what was “wrong” with me.

ANXIETY ABOUT COGNITIVE DEFICITS

Before I began at Canisius College, as planned, to pursue a Bachelor’s degree, I had to be evaluated for any cognitive deficits that would make more difficult to obtain a degree in my chosen field of study – Finance. This was of great concern to me as I had always planned to graduate from college and work in Business. To assess if I would require any academic accommodation, I consulted a neuropsychologist to evaluate my language, memory, and executive functioning skills through a battery of testing. The testing showed that I had deficits in the areas of motor skills (duh?) and visual interpretation. Fortunately, nothing that would really prevent me from pursuing studying Finance – and I was shown a way to better interpret and remember visualizations. In order to remember anything visual (i.e. pictures, graphs, what people look like, etc.), I must think about an image in words. This is something that I do today without even thinking about it.

Better yet, I finished all of my coursework at the Community College with high grades, so the fears of being unable to adapt and losing my academic skills were gone.

The next step before returning to school was ensuring that I could drive a car again. I got my license approximately three years earlier at age sixteen but my parents wanted me to complete a Driver Evaluation at the hospital. This was to evaluate my vision and reaction time to see if I could still safely operate a vehicle. I passed the test and started driving again, in a brand new car, before finishing the spring semester at ECC.

At the end of the Summer of 2010, I was ready to move into the dorms at Canisius College and start school full-time. It took a long time for me to get there but in the grand scheme of things I was fortunate to only be delayed by one year.

I graduated with a Bachelor’s degree cum laude in economics and finance in 2013, less than four years after walking out of the hospital.

LIFE TODAY

Matt and his husband KyleToday, after years of recovery, I will stress that one of the primary reasons I recovered so well was because of the support of my family, friends, and community. My life today is far better than I could have ever imagined–with or without suffering from a TBI. I still have some difficulty with speaking, particularly in the area of moderating the rate, prosody, and intelligibility of my speech. I also have difficulties with certain motor coordination, especially in the area of planning and replicating movement. These are particularly difficult when I have to speak and move at the same time, say, walking and talking.

Despite these small deficits, I choose to get out of bed each day with a smile on my face and a great appreciation for the opportunities I have taken to rebuild my life after being on life support and unable to move.

Outside of my full-time job and my personal life, I aim to use my experience in therapy to better the current paradigm of neuro-recovery and rehabilitation by speaking to groups of students and clinicians. I do this not to be glorified, but for the purpose of using my experience to show that good outcomes are more likely than past prognostic models would indicate given the vast improvements in medicine, rehabilitation science, and hospital staffing. I want to support a change in the current focus so that medical care is focused on the individual rather than on expected outcomes. In striving for this pursuit, I speak ambitiously to student therapists to push them to approach things from a different perspective–one where they see their patient’s individual goals and build a recovery plan based on what those goals are.

FINAL THOUGHTS

Personally, the “two year critical period” after brain injury was a major anxiety for me. Many clinicians had told me that most of the recovery from a TBI occurs within the first one year, and after that point my recovery would plateau such that my faculties would no longer improve. In my experience, I continued to see positive changes in myself well beyond the first two years of recovery and I still strive for continued improvements. I am always on the lookout for ways to improve my physical function and train my brain to accomplish different tasks with greater efficiency. Even though I may be accomplishing tasks in a different way than I would have without brain damage, if I found a way to reshape my brain in order to work around these deficiencies, I still regard those changes as recovering. I personally do not see any evidence that your brain ever stops changing after a brain injury and I believe with the right focus and activity, a healthy brain can continue to be reshaped, allowing for it to grow in its capabilities.