January Community Meeting: Art Therapy

BIST members expressed their creativity in a big way at our January community meeting, where clinical social worker Lynne Harford, MSW, RSW showed us the benefits of art therapy post-brain injury.

pictures from our art therapy community meeting
Rob shows off his art work, entitled ‘Release the Qi’ (top left); Some art supplies we used at the meeting (top right); a BIST member creates ‘Magic Beads’ (bottom left); Our presenter Lynne Harford (bottom right)

Lynne shared that she works with many clients who have brain injuries.

“I recognize that [living with the effects of brain injury] is a journey,” Lynne said. “I am honoured to hear and bear witness to the stories of my clients.”

Engaging in art can change a person’s physiology, reduce stress and lead to deep relaxation. Lynne said that these changes can be seen on a person’s brain wave patterns. Art can alter our perception of the world, change how we perceive pain and cope with various challenges. This is why art therapy can be so beneficial.

Lynne Harford shows off BIST members' art work
Lynne Harford shows off BIST members’ art work

There are certain myths about art and creativity, including that creativity can not be learned, and that art should only be created by ‘real’ artists. But Lynne stressed that creativity is for all of us. As kids, most of us thought we were great, creative artists, but we lose that confidence as we age.

Tips for getting your creativity on

  • Let go of any negative judgments you have about your own creativity
  • Jump into the process – forget about the final product
  • Don’t over-think your art
  • Don’t compare your work with your neighbour’s – this is about expressing something within yourself
  • Remember, you are your own unique and creative being
Sara shows her clay masterpiece (top); Sara working on her art (bottom left); Some more art supplies
Sara shows her clay masterpiece (top); Sara working on her art (bottom left); Some more art supplies

BIST members had the opportunity to work with pencil crayons, clay, paint, beads and pastels. After, Lynne held up everyone’s work, and asked members to describe their piece. As can be seen by some of these samples, we created a diversity of amazing art in a very short time!

BIST member shows off her work, 'We Are One' (left); 'Blob' (top right); ''York University Student Excited to Learn the Patois Curriculum (bottom left)
BIST member shows off her work, ‘We Are One’ (left); ‘Blob’ (top right); ”York University Student Excited to Learn the Patois Curriculum (bottom left)

Art Therapy Community MeetingArt Therapy Community Meeting

Our next community meeting will be on February 22nd, 6-8 p.m.
TOPIC: How to get better sleep and boost your energy with naturopathic doctor, Dr. Anne Hussaine, ND.

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.

1

2

 

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

Community meeting: technology and ABI

It’s an understatement to say that assistive technology has grown exponentially over the years, and at our October community meeting guest speakers Tracy Milner and Heather Condello, both registered occupational therapists at Complex Injury Rehab Inc, gave us the scoop on how technology can help in the everyday lives of people living with brain injury.

smart phone
PHOTO: NDIPAT.ORG

At the meeting, we discussed:

  • how to keep up with all the devices and apps that are available
  • which devices and apps are best suited to meet the needs of ABI survivors

Smartphones

Smartphones are like computers, and have more functionality than regular cellphones. They have the capacity for:

  • email, contacts, calendars
  • web browsing
  • document management, reminders, notes
  • pictures, videos
  • apps
  • social networking (Facebook, Twitter, Instagram, LinkedIn etc.)
  • WiFi
  • data plans
person using smartphone
PHOTO: GOVTECH.COM

Data plans

Data plans cover Internet use on your device, allowing you to do things such as check email, use social media (Facebook, Twitter etc.) and download things when you’re not connected to WiFi. When using data, it is important to be mindful of overage charges (going over your monthly data plan will result in extra charges) and roaming charges (depending on your plan, you may pay extra for data if you are out of town). Accessing WiFi (from home, or a library, coffee shop) does not use any of your data – so it’s best to to download apps or check email when you’re on WiFi. Data plan options include: 3G/4G/LTE and WiFi only (no data plan.) Flex plans and pay-as-you use are also available.

Risks with smartphones

  • losing your device – to protect yourself, download a lost phone finder 
  • breaking your device
  • using your phone impulsively

Complex Rehab Inc. has a smartphone selection worksheet to help you decide on which smartphone to buy. They have also created a ‘Day in the life with a smartphone‘ document to demonstrate how using a smartphone can help you with many daily activities when you’re living with a brain injury.

veteran using iPad app to relax
PHOTO: CBC via AP

Tablets

In general, tablets are a larger version of the smartphone. They can be purchased without a data plan, or 3G/4G/LTE options. iPad and Android are the most common type of tablets, but others are available, including e-readers. In general, tablets:

  • have larger screens than smart phones, from five to 13 inches wide
  • have similar capability as smartphones for apps
  • are lighter than laptops, and are easier to carry around
  • are a more mainstream compensatory strategy

Having said that, tablets also come with some risks. They can be broken or lost (though there are apps to help you find a lost tablet), and some may need support to set up and maintain their tablet. Their screens may also be diffiicult for some to use.

Therapeutic considerations

When choosing a device, it’s important to keep in mind the following:

  • size and weight of the device
  • touch screen sensitivity
  • if typing on a touch screen is difficult, keyboards for tablets can be purchased and are faily low cost
  • other accessories which can help with accessibility include stylus options, gloves, switch access and tongue drive systems
  • accessibility features include visual and hearing aids, voice control and physical access options such as mounting
  • battery life – a good battery is important so you can use your device on the go
  • consider where you’ll use the device (wheelchair, bed, table) and make sure the tablet you choose can be used comfortably in these locations
  • swing arm mounts can also be helpful
TYPES OF SMART WACHES; PHOTO
TYPES OF SMART WACHES; PHOTO: EXTREMETECH.COM

Choosing apps

There are about a zillion apps to chose from – and several kinds which can help with living with the effects of brain injury (see below.)  Here are some things to consider when choosing an app:

  • look at reviews and screen shots of apps before you download
  • once you select an app for download, a password is required
  • on an iPhone, you can download multiple apps with one password input over a certain amount of time, but use caution as many apps cost money and you don’t want to be inadvertently charged
  • downloading apps is faster when done on WiFi
  • pay attention to third-party software – which adds features to already downloaded apps but can also cost money
  • Free apps can contain a lot of ads, these can be distracting and are easy to accidentally click on
  • Not all apps are available across all devices

YOU CAN FIND A LIST OF APPS RECOMMENDED FOR BRAIN INJURY VIA BRAILINE HERE

a list of types of app to help people with ABI

Other kinds of technology

There are lots of other technological options than smartphones and tablets, here are some:

Smart homeshave environmental controls such as lighting, home devices, alarm, door, video,  and AV controls

SmartTVs – TVs with Internet connectivity

Gaming Consoles – Wii, Xbox, PS4

Roomba – the robot vacuum

Electronic door openers

Remote control blinds and shades

Smart watches (think of a watch with smartphone capabilities) and smart rings (which are not available in the mass market, but are available through pre-orders if you’re tempted)

Google Glass – wearable glasses with smartphone like abilities and natural language voice command

Sleep monitoring – devices that keep track of how much you’ve slept


Adapted from Tracy Milner’s and Heather Condello’s presentation at the BIST community meeting on October 26th, 2015

OUR NEXT COMMUNITY MEETING WILL BE ON NOVEMBER 23rd; TOPIC: MANAGING EMOTIONS AFTER BRAIN INJURY

TTC subway line numbers: what do you think?

At our October community meeting, BIST member Shireen Jeejeebhoy spoke to us about her concerns with the change of TTC subway line names to numbers.

picture of TTC subway signs
PHOTO VIA SHIREEN JEEJEEBHOY 

To summarize, Shireen thinks the subway line renaming, and TTC signage create cognitive and navigational challenges for people living with brain injury, and possibly people living with other kinds of disabilities as well.

Shireen also spoke about her experience at the TTC Public Forum on Accessible Transit this September, which she attended with BIST board member Kerry Foschia.

You can read more about  Shireen’s thoughts on the subway line name changes, and her recap of the TTC meeting on her blog, jeejeebhoy.ca.

Many members shared Shireen’s concerns about this issue, and expressed interest in contacting the TTC about their thoughts on TTC subway number lines and other accessibility issues.

Shireen has provided the following contact information for anyone to wants to share their concerns about the TTC:

TTC officials

Ian Dickson, Manager, Design and Wayfinding  https://twitter.com/ttcdesign or Ian.dickson@ttc.ca

Brad Ross, Head of Communications  https://twitter.com/bradttc or brad.ross@ttc.ca

PHOTO VIA SHIREEN JEEJEEBHOY
PHOTO VIA SHIREEN JEEJEEBHOY

TTC contact info for complaints, suggestions or compliments

For help with questions and concerns 7am-10pm 7 days/week: 416-393-3030; https://twitter.com/TTChelps

The TTC’s online form for complaints, suggestions or compliments

For service updates – When a service update gets tweeted, Shireen re-tweets it with the original line name and adds #accessibility in the post https://twitter.com/TTCnotices

For more information, you can contact Shireen via her Twitter or through her blog.

September community meeting: positive psychology

At our September community meeting, Amanda Muise and Roby Miller from Community Head Injury Resource Services (CHIRS) gave a presentation about positive psychology.

We also had the opportunity to hear our long-time member Frank Bruno talk about running the Pan Am Relay this past June, and many of us posed with his relay torch (see below.)

BIST Members
Community meeting attendees pose with Frank Bruno’s Pan Am Relay torch (Amanda Muise and Roby Miller from CHIRS are with Frank in the large photo.)

Positive psychology is a relatively new field of psychology, developed by Martin Seligman , the former president of the American Psychological Association. Seligman was motivated by wanting to know what makes people happier on a daily basis.

Seligman found that the roots of happiness are:

  • having positive emotions
  • being engaged in an activity or profession you love and can ‘get lost’ in
  • being in positive relationships
  • having meaning in your life (giving of yourself to others)
  • having a sense of achievement in your activities

And while it is kind of obvious, but also worthwhile mentioning, happiness is important because it’s good for you. People who are happy have fewer heart attacks, strokes and tend to live longer.

The three benefits of happiness

Other keys to finding happiness include:

  • the ability to savour – not chugging your coffee, but enjoying it
  • gratitude – being grateful for everything you have
  • having a positive attitude
  • mindfulness

Amanda and Roby gave us some exercises to help increase happiness.

Write a letter:

Take a moment to think of someone who made a big impact on your life. This person could be a teacher who helped you pass a difficult class, or an important friend in your life. Write a short letter to that person and explain the impact they had on you. You don’t have to share the letter, or even tell the person about it, though research shows that sharing this with the person increases your happiness.

‘Trick’ your brain into being happy

Body language can have a big impact on your brain. As social psychologist Amy Cuddy discusses in her Ted Talk, standing like Super Man in front of the mirror actually boosts your self-confidence. Chewing on a clean pencil uses the same muscles as smiling, and can actually make you feel happier, because your brain thinks you’re actually smiling.

Practise mindfulness

It’s easier said than done, but learning how to pay attention to the present moment or purposely slowing things down can increase your happiness. Even taking just one minute to meditate can be very helpful.

Take a moment to think about your day

This daily practise can help with gratitude and mindfulness:

Take a moment to think about  your day.

Record something that went well: what was the event? What had to happen for it go well? Why did it go well? What role did you play? Why is it important?

Find your 24 strengths

Learning about your strengths and how to use them is crucial to leading a happy life. You can take about 10 minutes and learn about your 24 top strengths at the VIA Institute on Character, a non-profit psychology organization. You’ll need to sign into the site, but it’s free. Another great resource is authentichappiness.org

infographic about strengths
PHOTO: VIA INSTITUTE ON CHARACTER

You can find out more about positive psychology by reading Sophia Voumvakis’ post on Finding Happiness after ABI, here. And we wrote about Frank’s Pan Am Relay experience this summer, right here.

There are a lot of meditation apps you can use, including some which are specific for brain injury. We’ve also discussed mindfulness at other community meetings, which you can read about here.

NEXT COMMUNITY MEETING:  MONDAY, OCTOBER 26th

TOPIC: TECHNOLOGY AND ABI

August community meeting: positive affirmations

At our August community meeting, BIST programs and services coordinator Kat Powell taught us about positive affirmations. After her talk, we made affirmation baskets – creating beautiful places to put our positive affirmations in and read when we need to.

a sample of affirmation baskets

Positive affirmations stem from a psychological theory which became popular in the late 1980s, coined by Claude SteeleAffirmations can be negative or positive, and it’s important to work on positive self-affirmations as a way to help ourselves and believe in ourselves. According to the Oxford English Dictionary, self-affirmation is:

The recognition and assertion of the existence and value of one’s individual self.

Negative affirmations, such as thinking ‘I’m no good at this’, are easy. How many times a day do you find yourself thinking negative thoughts, or self-critiquing? Negative affirmations erode at our self-esteem and happiness over time.

We generate many affirmations throughout the day, and when we doubt ourselves, the negative affirmations can cancel out whatever positive affirmations we have. This is why it’s important to develop your positive self-talk, think of it like building muscle,  so that you’re strong enough emotionally for when you need it the most.

Two BIST members work on affirmation baskets

To make our baskets, Kat brought some samples of positive affirmations she had found online. BIST members chose which ones suited them, and then decorated plastic baskets to hold their affirmations.

Most people used bright coloured tissue paper to decorate.

BIST member holds up finished affirmation basket

You can find many examples of positive affirmations online, including these two sites for  people living with brain injury and their families / caregivers:

3 tips for writing affirmations

There are also many examples of creating affirmation jars online – they range from the super-simple, to the very complex – for the more artistically inclined:

BIST member works on Affirmation basket

NEXT COMMUNITY MEETING: SEPTEMBER 28th, 6-8 p.m.
TOPIC: POSITIVE PSYCHOLOLOGY
MORE INFO

May Community Meeting: Reading rehab + Advocacy and brain injury

BIST had two speakers come to our May community meeting: BIST member and writer Shireen Jeejeebhoy discussed her experiences trying to re-gain her love of reading and Katie Muirhead, advocacy specialist at the Ontario Brain Injury Association (OBIA), spoke about advocacy.

Reading Rehab

Before her brain injury, Shireen was a vivacious reader,  a person who could lose herself in a book for hours. But after her ABI, Shireen lost that ability completely. It’s how she learnt the hard way that literacy does not equal reading.

Shireen can read words and sentences but can’t remember the information from them. She often stops in the middle of a sentence, and is unable to retain new vocabulary. She said she usually  needs a nap after a reading session, and ABI-related initiation problems mean even choosing what to read is a problem.

After her brain injury, Shireen said she followed the medical model of re-learning how to read. She focused on one page at a time, and says it her a full year to read a simple book, which, she says, she remembers absolutely nothing about.

The interesting thing is, Shireen has written several books since acquiring her brain injury, because, as she explains, reading is taking stuff in, whereas writing is taking stuff out.

Shireen said her first illumination was learning the physiological reasons why she was having difficulty reading from a EEG test. Also, biofeedback treatments helped her remember characters and improve her concentration, though she was still unable to recall the book after she was done reading it. When her biofeedback treatment ended, Shireen could read for 20 minutes a day – what the average person reads. But Shireen is a writer who needs to read for hours and hours a day. 20 minutes isn’t good enough.

Which is why Shireen says she convinced her neuropsychiatrist to help her regain her love of reading. She says she didn’t want to go back to a reading “expert”, who would claim her reading abilities are fine. She needed someone to start from the ground up, and who would respect her goals.

While the road Shireen is taking is bumpy, her neuropsychologist’s treatment is helping. His first exercise was to take a newspaper article and to listen to Shireen read out loud in the same way she would read silently, for as long as she could. Shireen says this helped her doctor see her get a headache, repeat words and get tired from her efforts. From this he is able to work with her to help her, hopefully, regain her love of reading.

Reading is a solitary activity,

You can read what Shireen has written for our blog about her experiences here.

Brain Injury and Advocacy

Katie Muirhead is the advocacy specialist at OBIA, and survivors who need help accessing services or benefits they feel they are entitled to can contact her for assistance at:  kmuirhead@obia.on.ca or (905) 641-8877 ext. 229.

Katie explained that advocacy is different than lobbying. Advocacy is supporting a cause, and trying to get others to notice and pay attention to that cause. Lobbying goes a step further, and aims to make systemic changes – something which non-profits such as OBIA (and BIST) are unable to do.

There are four types of advocacy:

  • Self advocacy – advocating for your own interests
  • Peer advocacy – advocating for someone else’s interests
  • Systemic advocacy – advocacting for change for a larger group of people
  • Legal Advocacy – when a lawyer helps advocate for your legal rights

Focusing on self advocacy, Katie discussed that we all have some barriers to being good self- advocates. Maybe we get frustrated quickly and can lose our temper, or keeping track of paper work just isn’t our thing. What’s important, Katie said, is to recognize those weaknesses and get support in dealing with them.

In order to achieve your goal (for example, get on ODSP benefits) Katie said it’s important to break down the problem into more manageable pieces. For example, if you were denied ODSP, consider:

  • why you were denied
  • what are the facts about your case which you know are true
  • collect the right information (usually, additional medical information)
  • carefully look at the denial letter

Documentation is very important. Be sure to keep track of all conversations that you have about your case. Include the following in your notes:

  • the date
  • time
  • names of people contacted and their titles
  • agency name and telephone number
  • description of what was discussed

In addition, it is very important to keep track of your medical information. Katie suggests keeping a binder of all of your documentation – so that everything is in one place. Organize these documents in a way that you can easily retrieve them.

Communication Skills

Finally, advacating for yourself is a very stressful thing to do. Often you are advocating because you have denied something you need, such as financial benefits. It’s why Katie said self-care is so important. Things such as setting boundaries (I will not take calls or work on this issue during meal times, for example), talking it out with people you trust and trying to take time out from the case are very important. For more information, you can read Katie’s presentation here.

Katie Muirhand, Advocacy Specialist, OBIA
kmuirhead@obia.on.ca or (905) 641-8877 ext. 229

Next community meeting: BIST AGM – June 22, 2015; 6-8 p.m.