IMAGE DESCRIPTION: A close up photo of a common zinnia, a purple flower with yellow stigmas at the centre and a green stem. The flower is surrounded by green leaves from other plants. (Photo: Hilary Pearson)
BY: HILARY PEARSON
February’s community meeting at BIST discusses the challenges faced in rehabilitation of Traumatic Brain Injury survivors, presented by Aaron Palmer of Melamed Palmer Innovative Rehab. Utilizing an occupational therapy approach, the goal is to become more independent and to reintegrate into the community.
What is occupational therapy?
Occupational therapy (OT) is a client-centred health profession concerned with promoting health and wellbeing through occupation. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life.
Occupation does not necessarily refer to a paid job position. The name emphasizes the importance of occupation (functional tasks and activities performed throughout life that are meaningful and purposeful to the individual). This could be activities such as gardening, painting, baking–anything that keeps you engaged.
OT involves the use of assessment and intervention to develop, recover, or maintain the meaningful activities, or occupations, of individuals, groups, or communities. The purpose of occupational therapy is to reclaim independence, to regain confidence and to feel ‘normal enough’ to reintegrate into society. Clearly, these are services that benefit people living with the effects of brain injury.
Everyone has occupational rights. These rights include a right to autonomy, a right to health and wellbeing, a right to justice, a right to independence, and a right to live a meaningful life.
“Whatever it is that you fill your day with. Whatever makes you happy.”
What barriers prevent brain injury survivors from participating in daily-living activities?
- Memory and supportive strategies
- Modify the activity or modify the environment
- Planning and pacing
- Physical activity and exercise
Below is an overview of specific memory functions, technology and apps, tips and ticks to support your working memory:
|Type of Memory||Definition||Example|
|Short Term Memory||“The capacity to store a small amount of information in the mind and keep it readily available for a short period of time.” – via verywellmind.com||Remembering where you parked your car.|
|Long Term Memory||“The storage of information over an extended period. This type of memory tends to be stable and can last a long time.” – verywellmind.com||Remembering who you talked to last week and what you spoke about.|
|Explicit Memory||Intentionally trying to remember a memory, which requires more effort.||Remembering a person’s name.|
|Implicit Memory||Subtle and unconscious, allows us to do things through repetition, and doesn’t take as much effort.||Typing on a keyboard.|
|Episodic Memory||“A category of long-term memory that involves the recollection of specific events, situations, and experiences.” – verywellmind.com||Remembering your first day of school.|
|Semantic Memory||General knowledge.||Knowing that trees grow.|
|Procedural Memory||The “how to” aspect of our memory.||Knowing how to ride a bicycle.|
|Prospective Memory||A form of memory that involves remembering to perform a planned action or recall a planned intention at some future point in time.
|Remembering to take medicine before you go to bed.|
Strategies to Support Memory
Forgetting to take your medication at the right time, or forgetting a birthday or a holiday are examples of challenges associated with prospective memory, this aspect of our memory is greatly affected after sustaining brain injury.
Electronics & Technology
- A little square that can be attached to your keys or wallet.
- You can check your phone and it will find it for you.
- A smart plug that you can use with your stove which sends reminders to your phone or to people you live with if you leave the stove or oven on longer than you normally do
- Turns off the stove the moment you walk away from it.
- If you forget your keys, smart locks can have a pin code set up through your phone.
- It can automatically lock at a certain time.
- You can set up a passcode for someone coming to visit such as a house cleaner. They get their own code for a certain specified time (perhaps two o’clock).
- You can add it to the call and it will record and transcribe the entire conversation into text.
- You can use this on your phone. Press record. It will record the conversation, and then put it in text (creates a transcript).
- Benefit: it’s always available. The Apple Watch is always right there. Use the voice command to take notes. It’s fantastic.
- For one time tasks: you can have Siri and Alexa to give you reminders for medication or upcoming appointments.
- Maintain a morning routine. What is it I have to do in the morning?
- Use a checklist, agenda, or a calendar.
- Repeat the information you need to remember by talking to yourself. For example, say “Pencil, pencil, pencil, pencil,” until you get to the room and get the pencil. This is implicit memory strengthening.
Set up your physical environment
- If you struggle with misplacing your items – give them a home. For example, put your keys in their own container. Put them in that container as soon as you get home.
- Organize your pills into weekly pill containers.
- Have a white board on your fridge for groceries. Write things down as soon as you realize you need them.
- Put things where you can see them.
- Tape a checklist to your the door: keys, phone, wallet, water bottle etc.
- Use a purse, and keep everything you need in that one purse/bag.
- Use file folders to organize daily tasks. Try to have a system and a habit and routine, consistent, methodical and organized.
- Set aside time for these tasks.
Strategies for strengthening your awareness
- Stop and check in with yourself: Self talk (How do I feel?)
- Journaling (How did you feel after doing that task?)
- You know yourself best. When you are journaling, note details such as quality of sleep, the weather conditions, hydration and food intake, etc.
- Reflecting on this documentation will help you with planning your day.
Modify the environment or the activity
After brain injury, you may need to recharge the battery (switch from a physically demanding task to a cognitively demanding task). Rest can entail a nap or meditation. Be aware of challenges following a brain injury and work toward identifying your triggers.
Be mindful of cognitive and mental fatigue. There’s a difference between physical fatigue and mental fatigue, which is often overlooked after brain injury. Tasks that used to be simple become more difficult after sustaining a brain injury. You may need to rest for a couple of days after completing a challenging task, due to the amount of energy required. Remember that everyone’s activity pattern is different.
Planning & Pacing
The goal of planning and pacing is to increase your tolerance of that activity without reaching the “significant symptoms” in the red zone. It’s about consistency—you want to be able to maintain this to help better control your symptoms.
Think of your energy levels like a battery. You don’t want to deplete all your energy at the beginning of the day. Make it last.
Use a timer to limit the time and energy used on a specific activity and then document it. For example, if you are reading: “I know after 20 minutes of reading my symptoms are at a 4/10. So what strategies can I use to get to the point of sensory overload or cognitive/mental fatigue?”
Do not let yourself reach the significant symptoms red zone. You need to train your brain to just read for 20 minutes. “Progress is Progress” Our presenter proposes a few steps we can take in order to make some personal progress in our activity pattern—a process for planning and pacing. The goal is to increase tolerance without triggering a flare up in symptoms. What is the process for progress? Start by making small goals.
Inadequate quality of sleep can lead you to develop body aches and pain, affects memory and concentration and cognitive functioning. Check out these tips listed below to support positive sleep behaviour:
- Go to bed only when sleepy.
- Get out of bed if you can’t sleep. After 15 minutes of not being able to fall asleep, get up and do something else for a while.
- Try to unlearn any negative association your mind may make with insomnia and your bed. Unlearn the negative associations.
- Get out of bed at a consistent time everyday.
- If you feel tired during the day, try standing up. This can help with shaking off fatigue.
- Avoid “wakeful” activities in bed. Avoid screen time before bed. Avoid or limit napping.
The bed is for sleep and sex and that’s it.
Our presenter points out that people flourish in different ways. When we look at diversity and culture, we have to consider what a meaningful life looks like for a certain community.
What does wellbeing, health, and occupation look like to each family? How does this differ in each culture? Cultural competence, cultural humility, and cultural responsiveness is an important aspect of occupational therapy approach to attaining wellbeing and strengthening health.
Connecting with others and learning how to relate to other people is all a part of the holistic approach to bridging the gaps in our society. It’s a lifelong process.
The more we share our lived experiences, the more awareness we create. It’s an opportunity to grow. It’s an opportunity to break down the walls that prevent independence, effective self-advocacy, and navigating the process of reintegration into the community.
Our presenter concludes with the following comments:
As occupational therapists, we are looking at how we can eliminate these barriers. Unmet needs affect your recovery. It’s all about finding the right person to help you navigate your recovery. Brain injury survivors want to advocate for themselves, but it can be scary. We are about the holistic approach. We take everything into account. We want to help.
Remember we are all in this together—but we all have different needs, different recoveries, different symptoms, different needs, different answers. We are all human. And our occupations are different, but nevertheless important. Our recoveries are important, and we need to stand by those who experience life with chronic conditions affecting their daily living.
Progress is progress. As long as we keep moving forward and trying—we are figuring out ways to flourish and thrive and attain health, wellbeing, justice, and a meaningful life.
Everyone deserves to live a meaningful life.
How does occupational therapy show up in my life?
Storytime with the author
As a TBI (Traumatic Brain Injury) survivor recovering from PCS (post-concussion syndrome) I can relate to the sense of loss regarding occupation. TBI survivors often battle severe symptoms that prevent their participation in typical daily life activities. After sustaining a brain injury, I was unable to work and took medical leave from academic study. My days were painted with pain and fatigue. I questioned the definition of what it means to “live a meaningful life.”
Through the support systems accessible through BIST (Brain Injury Society Toronto) I was connected with a peer mentor who could sympathize with the challenges often faced by those living with this dynamic invisible disability. I told my mentor (J) that I do nothing all day and I hate it. I feel useless and un-able and lost. J provides her response to TBI recovery, daily activity, and occupational therapy below.
Survivor Stories: with J (a peer mentor)
J: For a while it seemed as though my existence revolved around puzzles. My life itself was in pieces that I was incessantly trying to put back together to see it as I once had. Clearly that wasn’t working, so I figured, why not do puzzles so that I can eventually say I put something back together?
Most days, I tried the same pieces in the exact same spots more times than I care to know but; eventually, I noticed that I was doing that less and less. Not only were pieces coming together faster, but the pieces of my life were slowly coming together as well. I was hooked. The visual aspect of the puzzle and the positive feedback loop it created in my brain and soul is what gave me drive. Doing puzzles allowed me to take things one step at a time, day by day, and also gave me something pretty to look at when the rest of my life looked anything but.
I told myself that my job was to go to the kitchen and finish these puzzles.
Remember, your occupation can be anything that keeps you engaged—anything that keeps your brain #slightly active.
Survivor Stories with the author
My recovery journey was highly influenced and guided by my supportive peers—through BIST and via online social media platforms (a place to connect with people around the world who have shared experiences). I tried making puzzles. I felt like I was going cross eyed and felt nauseous and dizzy. I got better with practice, but puzzles aren’t really my thing.
My thing is volleyball. I played court and beach volleyball for over a decade. Volleyball is something that makes me happy.
I am inspired by Lacey Fuller, a professional volleyball player residing in California. Lacey is an active TBI (traumatic brain injury) and PCS (post concussion syndrome) advocate who shares her recovery journey on her Instagram social media platform @slightlyactive.
Like Fuller, I received my traumatic brain injury during a volleyball game. I thought I’d never play again due to the severity of my symptoms and from the fear of re-injury.
Lacey records a short video each week involving a clip of her performing a volleyball drill (for example: 3 serves, bumping the ball up and up and up for a few minutes) or a recording of target physio exercises that support brain injury recovery. Lacey’s recovery journey includes a focused mindset on “staying slightly active” as a means to regain independence and to manifest a meaningful life post brain injury.
I decided to give it a shot.
The following poem, Pavement, describes an early attempt at staying #slightly active:
by: Hilary Pearson
My roommate and I braved the pandemic together and often wished we could be more active and spend more time outside—even if outside meant a walk around our busy block in Toronto. I pack a bag with sunglasses, noise cancelling headphones, 2 cans of lime Bubly water, 2 protein bars, and a light-weight volleyball.
She walks me to the end of the street, waves, and takes off for a walk around the block. I prop my iPhone up on the sidewalk and hit record video. I toss my ball up and bump, set, set, set—bump, set, set, set. Cars whiz by. My heart beat booms in my ear like a drum. My shoes crunch the pavement. I catch the ball and sit on the curb—nauseous and dizzy.
I sat on the pavement for a long time after this.
I stopped the recording and sat crumpled on the sidewalk. My ears were ringing. Like someone messing with the dial on an old radio. My roommate asked me if I was okay. I mumbled “Yeah, why?” She told me it looked like I was falling asleep.
I knew I needed water and sugar or protein or anything in me to get me back to my house. We were half a block away. My roommate said we can go when I’m ready. I probably could have fallen asleep there. I don’t know that I’ve ever felt such displacement like this prior to obtaining my brain injury. I played with this recording—speeding it up and slowing it down. It mirrors some of what it feels like to be swimming through reality with brain damage.
On the walk back, I stopped at every house to take pictures of the flowers growing in my neighbour’s gardens.
I felt drunk. And high. And slow. And lost.
My roommate talked to me about her favourite flowers. She pointed them all out to me and she paused with me every few feet while I crouched down on the sidewalk trying to keep my heart rate down and my breathing regular and waited for the spots to leave my vision.
I don’t remember getting home. I don’t know what happened the rest of the night. I am grateful to have someone in my life that doesn’t need any explanation.
I told myself, this is my job: creating these short videos of me practicing volleyball drills videos were my job–my occupation. I was on medical leave from school and from work. I didn’t live a “normal” life. I knew I could get up and record myself playing 15 seconds of volleyball. And I did this for 21 consecutive weeks.
My roommate describes my progress as a holistic improvement as she witnessed my #silghtlyactive recovery journey. She said that at the beginning of my volleyball training, I would go home afterward and not speak for the rest of the night due to brain fog and fatigue. She noted that after a few months, she noticed that I was more alert and had more energy, I was talking more and moving more and had fewer brain fog days.
I was inspired by Lacey’s #slightlyactive movement and watched her recovery journey with hope. I just wanted to play volleyball again, in any format. Sports were such a big part of my life and I felt like part of me was missing as I spent so many years resting and recovering in the dark of my room from a TBI. It’s what got me out of my bed. It was different from physio exercises. I was motivated because I had someone to look up to, had a role model who shared her lived experience—vulnerably and passionately on social media. She gave me hope that I could play one day again too.
Remember, your occupation can be anything that keeps you engaged—anything that keeps your body and mind #slightlyactive.
Progress is progress. As long as we keep moving forward and trying—we are figuring out ways to flourish and thrive and attain positive health, wellbeing, justice, and a meaningful life.
Everyone deserves to live a meaningful life.
Hilary is a Toronto-based non-fiction writer and UofT master’s student. Hilary is recovering from TBI, PCS— and spends much of her free time on FaceTime with Isla, her baby niece.”