November community meeting: managing emotions

The emotional aspects of living with a brain injury often get lost in all the other challenges, which occur following an ABI. Which is why Melissa Cutler, neurorehabilitation social worker at Bridgepoint Active Healthcare came to our November community meeting to talk about managing emotions after brain injury.

Melissa Cutler
Melissa Cutler poses with BIST member Neil after her talk

Melissa began her talk by acknowledging that everyone has a different story, and that we are all the experts of our own situation. As such, much of Melissa’s discussion involved input from BIST members.

Since the emotional aspects and challenges of living with brain injury can so often be neglected, we began with a discussion about why we should talk about our emotions after brain injury in the first place. Here are some of the things BIST members discussed:

  • Talking leads to accceptance, and acknowledging how I’m different post-ABI
  • Sometimes I get agitated, and I want to leave the situation
  • My emotions are more on the surface after a brain injury
  • There’s less patience, more frustration post-ABI

Eat well, sleep well, feel better

We all have a certain amount of energy. When we are tired, we don’t have the same cognitive abilities as when we are energized. Our ‘filter’ – what keeps us from bluring out anything and everything that’s on our mind- isn’t there to the same extent, and our compulsiveness increases.

All of these traits can be related to brain injury, but factors such as being hungry or being in physical pain can also effect our emotions. When we’re well slept and well nourished it’s easier to manage our emotions. This is something to be mindful of.

BIST members make cards
BIST members make coping cards at our community meeting

What do emotions feel like after an ABI?

BIST members shared their physical and mental feelings associated with emotions:

  • Tension builds up, and it’s visible on my face
  • My veins pop out
  • I begin asking people to repeat themselves
  • I get a buzzing feeling in my head
  • Dizzy
  • Nausea
  • Headache
  • Foggy
  • Can’t find my ‘stop’ button
  • Fear – you don’t know what to do or how to deal with it

Members also discussed that brain injury can lead to a lack of emotion. Some emotions, such as sadness, can be particularly hard to feel. Knowing you ‘should’ feel a certain emotion during a specific situation, but that you’re unable to, can be very frustrating.

This is similar to being stuck in a certain emotional space – whether it’s negative or postive. Melissa discussed the need for balance. Negative emotions, she said, are a part of life, but they need to be balanced with positive feelings as well.

BIST members shared that they tend to struggle with the following emotions:

  • Discouragement
  • Feeling withdrawn
  • Feeling a range of emotions, and not being stuck is difficult

What works?

We discussed the following tips to help manage emotions after brain injury:

  • Talking about our emotions can get them out of our system
  • Try not to let negative comments from others get you down
  • Avoid ‘energy pirates’ who rob us of our energy
  • Activities such as yoga, meditation, playing cards, bingo, curling, computer games etc. can give us pleasure and lead to a sense of accomplishment
  • Sticking to a routine
  • Asking for and receiving help
  • Getting out and socializing
  • Not being alone, not dwelling on the brain injury
  • Exercising mind and body
  • Helping others can also make you feel good
  • Playing and listening to music
BIST members at our managing emotions community meeting
BIST members make coping cards

Time management and emotions

Many ABI survivors can have a lot of time on their hands, which is something to get used to. Too much time can be a bad thing, and as such, it’s important to keep track of your time and not let it slip away. Members shared that they can feel nervous when they wake up in the morning, not knowing how they’re going to spend their day. Incoporating structure into your daily routine, can not only help you get stuff done, but can also help you emotionally. Knowing what’s expected of you each day can also help with initiation problems which many people living with ABI experience. Here are some tips:

  • Mark down your activities for the day, week or month ahead
  • Find activities that are meaningful to you (art, exercise, being with an animal)
  • It can be help to make an activity list with someone else
  • Your list should be specific, for example if you write ‘clean room’ write which room you are cleaning

Importantly, the way you coped before the brain injury may not be accessible or possible right now.

You may have read for hours to escape into a book, or jogged everyday to work out your stress, which are activities that can be impacted by ABI. When brain injury takes away our previous coping mechanisms, it’s important to find new and healthy ones to replace them.

Build our tool box ‘coping cards’

Melissa showed us one way to deal with our emotions, through coping cards. These are simple, portable and personalized to your situation. They are a toolkit to remind ourselves ways to cope when we experience challenging situations and emotions. You can download a sample card HERE, and also see the examples below so you can create your own.

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Next community meeting: January 25th, 2016
Topic: Art Therapy and ABI

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The Pinky and Sarah love story

BY: JOHN STEVENS

This is the story of how two BIST members – Pinky and Sarah – met  (spoiler alert: it was at a BIST community meeting) and found love. 

PINKY AND SARAH HAVING FUN AT A BIST COMMUNITY MEETING
PINKY AND SARAH PERFORM WITH THE BAND COUGAR BAIT AT A BIST COMMUNITY MEETING IN 2013

Sarah Briggs was 19-years-old in January of 1994, and competing at the provincial level in the seventh race of the season in a downhill skiing event at Mont-Sainte-Anne, Que., when she suffered her brain injury.

Two other skiers had already lost control earlier in the competition in a very rough and steep area of the course, halfway down the hill. One had broken her leg.

As Sarah entered the section at a speed of more than 100 kilometres an hour, she lost one of her skis. She doesn’t remember much of the crash, only that she was trying to get up.

Sarah suffered severe facial injuries, lost two litres of blood and required 12 hours of surgery. She spent eight days in the hospital, five of which were in intensive care. Despite this, there was no mention that she might have acquired a brain injury.

Pinky’s real name is Michael Clouthier, but what he writes on his BIST name tag, and what he prefers to be called, is Pinky. He got his nickname in grade seven when his classmates noticed he liked to wear pink most of the time. Over the years, that part of Pinky’s style hasn’t changed. Spot the guy in pink at a community meeting, and it’s likely him.

Pinky says his brain injury is one of the best things that ever happened to him. That may sound strange to most people, but Pinky says nearly dying saved his life.

He says he was a ‘badass’ as a teenager, heading down a path that took him on the wrong side of the law with all the violence and danger that is involved. His mother and a friend each told him he would either be dead, or in prison, if not for a fateful day in October, 1991.

Pinky, then 18 years-old, was riding his mountain bicycle and on his way to a party to sing reggae songs at a friend’s place. He was listening to music on his headphones as he crossed a busy intersection in Scarborough. He never heard or saw the car as it quickly approached him on his right. By coincidence, a close friend happened to be getting off a TTC bus at the moment of his accident. That friend comforted and kept Pinky conscious until the ambulance arrived.

Doctors told Pinky they had to revive him three or four times. He was on life support for five weeks and spent 40 days in an induced coma. Pinky knew as soon as he became conscious that his life had changed. He spent the next year in hospital, learning how to walk and talk again.

Pinky hams it up during a Cougar Bait performance
PINKY (WEARING HIS FAVOURITE COLOUR)  HAMS IT UP DURING THE COUGAR BAIT PERFORMANCE AT BIST

Pinky says one of his mother’s friends came to visit him in the hospital. The man brought him a stuffed dog and they spoke, briefly, about religion. Their short conversation changed the course of Pinky’s life.

I thought … I went through all this and I’m still alive … (maybe God) has plans for me. God … I’m sorry I had to go through all this to be a believer. – Pinky

Pinky still has the stuffed dog from that fateful day in the hospital. He calls it CB, short for coma buddy, and still sleeps with it from time to time.

After recovering from their physical injuries, both Pinky and Sarah tried to rejoin the world they had known before. Sarah carried on with her life plan after her accident. She finished OAC and moved to Alberta to work on a Bachelor of Kinesiology at the University of Calgary. “To be a gym teacher,” she quipped.

Sarah seemed to be doing well, until she got into her fourth year. That’s when her workload changed and she noticed that everything became much harder. She also noticed she was not making good decisions in her personal life. She decided to move back to Toronto and re-enrol at the University of Toronto, closer to family and friends. It took her six years, in all, to finally finish her bachelor degree. The stress, however, was too much for her and Sarah suffered a mental breakdown.

Not one to give up, in 2000, Sarah enrolled in teachers college at Queens University. Her workload was even more intense than the fourth year of her bachelor’s degree. Things did not go well when, three weeks into school, Sarah began a teaching placement in Peterborough.

I was just trying to act like everything was normal. I didn’t know I had a brain injury. – Sarah

Sarah underwent a number of examinations and tests to try to determine what could be causing her problems. Finally, the doctors diagnosed her brain injury symptoms and told her she had probably suffered an acquired brain injury as a result of her skiing accident.

SARAH ON A BIST COMMUNITY FIELD TRIP IN 2014
SARAH ON A BIST COMMUNITY FIELD TRIP IN 2014

Sarah withdrew from teachers’ college. She says she had trouble, similar to other survivors, accepting her new reality and life. With her new diagnosis, Sarah entered the first stage of recovery, denial.

Sarah tried to go on, moving in with a sister and brother-in-law. She helped to care for their four children as a live-in nanny would. She worked part-time as a ski instructor in winter and at various odd jobs in the summer such as landscaping.

Pinky tried working at Walmart, but he had trouble keeping his interest in a job for very long. So he worked at almost every position in the store, except the cash register. After a year, he left.

At BIST community meetings, Pinky will often one of the first members to introduce himself to a newcomer. He’ll break the ice and calm first-timer nerves by showing off his rhyming-on-the-spot skills. (He can rhyme pretty much anything, except for the word ‘orange’, he says.) He enjoys music, sings and raps – even about his accident. When he and a partner decided to start a karaoke business the year after he left Walmart, Pinky thought his extraverted personality and love of music meant he was bound for success.

PINKY TAKES THE STAGE AT A BIST HALLOWEEN PARTY IN 2012
PINKY TAKES THE STAGE AT A BIST HALLOWEEN PARTY IN 2012

For three years, at least, there was success. Pinky found he had no patience dealing with drunken customers at various bars around the city. But the venture did give Pinky, an avid wrestling fan, the opportunity meet retired professional wrestler Reginald ‘Sweet Daddy’ Siki, who also happens to be in the karaoke business in Toronto.

One day in 2005, a friend told Sarah about an organization for people with brain injuries. Sarah’s friend had also suffered a brain injury after a car landed on her car from an overpass. This friend took Sarah to her first BIST meeting. Sarah says she noticed another survivor, Pinky, as she went to BIST events.

I was in awe, because I was so devastated by this thing (the brain injury) and I saw this guy. He was so positive and he was making people laugh. [His brain injury] hadn’t totally destroyed him. I thought that was so cool. – Sarah

SARAH AT A BIST COMMUNITY FIELD TRIP IN 2014
SARAH AT A BIST COMMUNITY FIELD TRIP IN 2014

Someone once asked Pinky how come he is so happy and he replied, “Like Tupac said, ‘keep your head up’…in all things.”

Pinky says he noticed Sarah too:

I thought she was a high-class woman. I (really) didn’t think she would be interested (in me). – Pinky

Both were in relationships with other people when they met, but they got to know each other as they went to more BIST meetings. Getting to know Pinky over the next three-years helped Sarah get to the point many survivors face, acceptance. “Well, this is new me, and I can live with that,” she said.

Sarah says she and Pinky eventually exchanged phone numbers, but Pinky didn’t call. Sarah later recalled being on a dinner date with someone, who happened to be friends with Pinky, and all she wanted to do was talk and ask questions about Pinky.

She was at a jazz festival in the summer of 2008, when Sarah decided to ‘take the initiative’ and call Pinky. He came by with a friend, in a car, and picked her up. The two started dating, and the “rest is history”.

Early in 2009, Pinky and Sarah were finishing a presentation about relationships after brain injury at BIST. Pinky asked Sarah to close her eyes. He told the crowd that he had to make ‘good’ on his words as he got down on one knee, pulled a small box from his pocket, opened it, and asked Sarah to marry him. They were married that summer.

Pinky has another reason to smile and another ‘best thing’ coming into his and Sarah’s life soon. They are expecting a baby this July. Pinky laughs when asked about his thoughts on becoming a father:

Daddy O…Daddy Pinky. What do you want Pinky Junior?

John Stevens is a former writer, journalist and television producer. He is a nine-year brain injury survivor and six-year member of BIST. This is his first feature since his injury.

BIST’s 10th anniversary party!

Photos and words by: G. IAN BOWLES 

July 28th was the celebration of BIST’s 10th anniversary, marking 10 years of activity, growth and helping those who have survived brain injuries.

BIST 10 year anniversary cake
Often there are specific themes to the BIST community meetings, such as answering questions people have asked, addressing concerns or encouraging proactive communication. So those who attend are treated to some education as well as some fun. Not that the 28th was not like that, but the theme was entirely one of celebration. A band (Cougar Bait) was brought in, there was karaoke and dancing, and dinner was provided.

The cake was particularly special, made up of cupcakes with a single layer of frosting between them all.

Many of us reconnected with friends we had not seen for a long time, we also met new acquaintances.

Several speakers gave their memories of the last ten years, from humble beginnings through a time without any organization that brain injury survivors could call their own. Since then we’ve grown to where we have our own office and staff, dozens of meetings through the year, have received grants and are actively fundraising. We’ve come quite far, and the event was a great recognition of the effort that’s been made.

 

Find more pictures of BIST’s 10th anniversary celebration here

BIST members do karaokeBIST members hug each otherBIST chair Judy Moir gives a speech IMG_2065

BIST members talking and laughingBIST member does karoake with a band memberBIST member does karoake BIST member gives a speech

 

Brain dancing with Annemarie Cabri

annemarie1-1At a BIST community meeting last month, Annemarie Cabri, founder of Cabri Creative Dance, led BIST members through the steps of “BrainDance.” She took part in a Q&A with BIST to explain the benefits of dance for our brains.

BIST: Can you describe what “brain compatible dance” is?

Annemarie Cabri: A brain-compatible dance class is a method using 10 basic principles developed around the neuroscience findings of how the brain learns best.

One of the principles is that we physically ‘DO’ the lesson for high-lesson retention and high engagement for all learners and abilities. A traditional dance class has a focus on learnt steps, teacher-driven delivery, with little directed exploration and self-found expression. These would be the opposite in a brain-compatible class where discovering self-expression, movement exploration, student-driven exercises and a multi-sensory environment are present.

In our culture we tend to separate things we do for our body, from things we do for our mind, and both from things we do for our soul or emotional health. A brain-compatible dance class can address all of these in one.

BIST: Has there been a proven benefit to dance for people with acquired brain injuries? Can you describe some of these benefits? What is it about dance that helps with brain function?

Cabri: Yes, dance that incorporates the work done by neurological reorganization has benefits for people who have been hit by a car, spinal cord injury, memory and cognitive problems, stroke victim, post traumatic stress, head injury from industrial accident and the list goes on from small children to people in their nineties.

Movement has benefits to better learning as described here :

‘Every time we move in an organized, graceful manner, full brain activation and integration occurs, and the door to learning opens naturally. Howard Gardner, Jean Ayres, Rudolf Steiner, Maria Montessori, Moshe Feldenkreis, Glenn Dolamn, and many other outstanding innovators in the field of learning espouse the importance of movement to the learning process’ (Hannaford).

So once we are learning, we are living fully, are able to engage successfully, and keep our whole body healthy. This learning can take place in dance.

Click here to see Cabri teaching Brain Dance to students.

Dance taught in a brain-compatible method combined with BrainDance goes one step further, helping with brain function as it can address issues in the lower brain, mid-brain and upper brain. Our lower brain function controls circulation, respiration, breathing, heart rate, wake and sleep patterns which can be improved with dance. The mid-brain is known as the emotional and social brain, stimulating or inhibiting activity in other parts of the brain. Dance helps with this stimulation or control of stimulation increasing emotional social intelligence. Memory is also increased in dance which is governed by the hippocampus in the mid-brain. The upper brain among other things will be exercised in creativity, problem solving, verbal expression and planning all found within a brain-compatible dance class.

BIST: Is this a routine you recommend people do everyday? Can it be done on their own?

Cabri: Yes, BrainDance is the sequence I do in every class at the beginning, taking us through a full-bodied movement series that benefits brain activation. The BrainDance is a rich multi-layered warm-up that sets the tone for the entire brain-compatible dance class. The video is somewhat flat and two dimensional (which is not so brain-compatible) and not very full-bodied, but gives people the wording and basics. People attending my workshop might remember we started our BrainDance on chairs and then moved all around the room including some partner work.

The BrainDance was developed by Anne Green Gilbert as well as brain-compatible dance education.

You can do the BrainDance once or many times a day to boost and awaken or settle and de-stress activity to the brain. I know these are complete opposites but such is the case.

To benefit further of course would be to do the BrainDance in a brain-compatible class where group work, on-going variations, tactile stimulation through the use of props and partner work is explored. Anyone with a brain injury of any kind would do well to learn the BrainDance on the floor version.

I am passionate about why this method touches people in a way that many exercise and therapy programs do not.

I love seeing in my classes the power of quality arts education where the sciences meet the arts.

Find out more about Annemarie Cabri at her personal website.

Understanding Biofeedback

bist1
Doctors Michael and Lynda Thompson

By Mark Koning 

Imagine being able to see the activities of your brain. To see how your brain waves look and react to things such as your speech, your skin temperature, your breathing and your heart rate.

Doctors Michael and Lynda Thompson gave a presentation at a BIST meeting last month about biofeedback and introduced those in attendance to their ADD Centre.

The goal of the centre is somewhat complex but also fairly simple – to assess brain injuries, derived from concussions, and then offer treatment through the aid of Neurofeedback; measuring brain speed and looking at brain maps. They focus on the attention, the executive (personality) and the biochemistry of where an individual is at and where and how they can improve.

Mild concussions are not always picked up by an MRI, and the sad fact is, that once you get one concussion, you are more likely to receive a second. The biggest problem we face with brain injury, as most of us with one already know, is that a brain injury does not necessarily have any physical signs; it can be and usually is invisible to the naked eye.

After an injury occurs, certain brain cells may not connect and the process of learning slows down, or the opposite happens, where too much connecting takes place because we work ourselves too hard to keep up. This is where the ADD centre comes into play and offers help in re-training the brain to find a solution. Visit the website www.addcentre.com for more information.

Whether you go with their offered training or just spend some time reading about what they say and do, you’ll come away from it with a new appreciation of what even an injured brain can accomplish. We can re-learn and grow with any situation or opportunity presented to us. Like they say on their website, “You can’t change the wind, but you can adjust the sails.”

bist3During this presentation it was most interesting to take part in a breathing technique that helped turn feelings of frustration, confusion, and worry into calmness and focused thoughts. While this technique was being practiced by the audience, a volunteered participant had herself hooked up to a computer via three small electrodes (one on the scalp and one on each earlobe) and we all got to view on a large screen how her brain waves were reacting.

It is always nice to learn about programs and services that are there to engage and offer help. We are all capable of overcoming a lot on our own, but sometimes we need a little push or guidance. Doctors Michael and Lynda Thompson, at the very least, allow us to expand our choices.

Mark Koning is a member of BIST.