I chose my health over the job I loved

BY: ALYSON ROGERS

For two and a half years, I worked at a social service agency for youth in Toronto.  I worked as part of a team to provide basic needs and case management to youth from diverse backgrounds.  Every day was different; on some, I ran workshops and danced to Drake in the girls’ dorms.  On others, I spent hours in an emergency room with survivors of human trafficking that had just escaped their exploiter.  Whether it was a day of fun or a day of crisis, I loved my job.

I loved my job so much that I was taking classes while working full time, with the goal of moving up within the agency.  My job combined my passion of working with young people, ability to respond to sexual violence, and knowledge of disabilities.  I loved my job so much that I worked through multiple concussions when I probably should have taken a leave of absence.  I loved my job, but two months ago, I abruptly quit.

Photo by Daria Shevtsova from Pexels

My departure was shocking to my coworkers, the young people I worked with, and even to myself.  When people leave a social service job, they usually have something else lined up. I had no other job waiting for me, and it was not the time of year to be applying to master’s degree programs.  Quitting my job came down to a choice; my job or my health.  I chose my health.

In the span of a year and a half, I had four concussions at work. With new symptoms and challenges, this was the worst my brain injury health had been since my diffuse axonal injury in 2008. Even though I was able to do my job, I was on medication for the first time and felt like I was struggling to stay afloat in such a fast-paced and demanding work environment.

On top of what I was feeling physically, some of my coworkers didn’t take too kindly to the minimal accommodation (working day shifts) I needed.  My own disability began to discredit the knowledge I had of various disabilities that dated back to before I even I had a brain injury.  My goal was to move up within the agency, so I kept how much I was struggling to myself while sharing just enough to keep the accommodation I needed. It was a fine balance.

In the New Year, I took a short contract in another department; the work was similar, but I had the freedom to work at a pace that accommodated my brain injury needs.  A few weeks in, I saw a huge improvement in my health; I had fewer symptoms, felt less fatigued and was able to participate more in my life outside of work.  My contract ended early and I was expected to return to my previous position.  This also meant returning to brain injury symptoms.  I’d had a taste of a life that didn’t only consist of work and brain injury symptoms, and I wasn’t going back.

I got a doctor’s note, spoke to the appropriate external agency for support, and came up with my own ideas, but no further accommodations were available to me.  I always knew that the decisions I made as a Youth Worker could lead to repercussions, but I never thought my disability would be used to carry them out.  The writing was on the wall – I was done here.  As much as I loved my job, I loved my health more.

On the last day of my short contract, I packed up all my things with the help of a few friends and slipped out the back door. I knew I wouldn’t be back. A few days later, I quit from home by e-mail. I had previously booked a vacation that overlapped with my two-weeks’ notice, and used my sick days to cover the rest.

Everyone was surprised by my abrupt resignation because I loved my job so much, but was it really that abrupt? For over a year, I worked in an environment that simply tolerated my disability. When I spoke about anything, let alone disability, I was met with eye rolls, and a flood of unrelated and unfounded complaints were brought to my supervisor. The youth group I facilitated couldn’t get any support, but blossomed after I left. When I had a medical emergency and needed to go to the hospital, I was left on my own until a supportive co-worker found me. Two of my head injuries were caused by the same environmental factor that remained unchanged at the time of my resignation. Looking back, I should have quit much sooner.

I loved my job.  I miss the youth I worked with and the coworkers that supported me, but I have no regrets about resigning.  I thought picking between the job I loved and my health would be a hard decision when I was finally faced with it, but it wasn’t.

I can (and did) find another job, but I can’t find another brain so I need to keep this one as healthy as possible.

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Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.

 

Useful tools or symptom inducers? On using smartphones when you have a brain injury

BY: BLUE HELMET GIRL

I had my accident in July 2015, right in the middle of the smartphone era. About a month after my TBI, I was in the hospital and I got my phone back for the first time. I tried to reply to a text. It didn’t work. My brain tried to tell my fingers to type, but nothing happened. The connection was lost.

Four years later, the connection is back. And now, I rely on my smartphone more than ever for certain things. There are so many pros with smartphones when dealing with a brain injury, but there are also cons.

Pros:

• Calendar: Having a calendar app on my phone is what I rely on the most. My app can set reminders for events. I have inconsistent appointments, so I set the event to remind me the day before. Also, having your schedule with you is helpful for planning stuff on the go.
  • App I use: iCal

• Reminders: If I remember I need to pay a bill but I’m away from home, right away I put it in my reminders app. If I don’t do this, I will forget it by the time I get home. I set reminders at a specific time that I know I will be available to do this task.
  • App I use: Reminders (iPhone)

• Medication Reminders: Sometimes I’m in a rush and forget to take my meds. Every day, I’ll get a reminder at the same time. If I forget to take it, I can use one of the extras I carry with me when I’m out.
  • App I use: Pill Reminder

• Headache Tracker: I find tracking headache symptoms on the go helpful, rather than trying to remember how I felt the next day. It’s not ideal to be looking at a screen with a headache, but it can pay off to notice patterns with symptoms.
  • App I use: Headache Diary Pro

• Step counter: Monitoring my steps throughout the day is helpful for my energy levels. When I reach 10,000 steps, I know it’s time to rest or I will burn out.
  • App I use: Health (iPhone)

Cons:

• Blue light: That nasty blue light on your phone is the worst for your eyes and can be a nightmare when you have a headache. For me, I find it drains my energy if I look at it too long.

• Social media (energy): I can get into a deep Internet hole with social media accessible at any time. I set myself daily limits and when I reach them certain apps will lock.

• Social media (emotional): Seeing friends living their best lives while I’m at home on the couch sucks. This can be detrimental for a person’s mental health, especially if their injury prevents them from doing certain activities.

In conclusion, there are a lot more pros than cons to my smartphone usage. There aren’t many cons, but those that exist can be significant.  All one has to do is find strategies to deal with the cons so that the pros can be enjoyed. In a way, we are lucky to have smartphones to help us deal with our injuries, and make life a bit easier.

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The Blue Helmet Girl is a woman in her mid-twenties who acquired a TBI 4 years ago, and after 3 open head surgeries, has recovered remarkably. With a high level of organization skills and self-awareness, she hopes to help others by sharing her unique story and strategies. In her spare time, you can find her hanging out with her dog, taking pictures or writing in her journal.

Follow her on Twitter @theBHjourney, on Instagram @bluehelmetjourney or www.thebluehelmetjourney.com

 

 

 

 

April 2019 Community Meeting Recap: Protecting Yourself from Scams and Phishing with Jason Peddle

BY: JULIA RENAUD

BIST’s April Community Meeting featured guest speaker Jason Peddle, Vulnerable Persons Coordinator at the Toronto Police Services who spoke about protecting yourself from scams and phishing.

About Jason Peddle:

• With a background in Kinesiology, Social Work, and Dementia Studies, Jason has worked as a Therapeutic Recreationalist in nursing homes and as a Family Support Worker at the Alzheimer Society.
• He switched vocations in 2006, and for 10 years worked as a Police Officer in various roles, including front-line policing.
• As his career progressed, his interest in Community Focused Policing led to his appointment as Toronto Police Service’s Vulnerable Persons Coordinator, a role h he has done for three years.

What to know about scams:

• Anyone and everyone can be a target of a scam
• The goal of the scammer is to get your money now OR
• Get your personal information to use to get your money later!

The 5 Hallmarks of a Scam

1.     Unsolicited

They came to you without your request, such as by phone call, e-mail, door knocking etc.

2.     Urgency

They want you to do something right away or else, such as ‘pay now or you will get arrested!’

3.     This is routine

If you question them, they will assure you that what they are doing is completely normal. They talk quickly and give a lot of information so there is less time to process it. They will try to convince you that if you question them, you are in the wrong, such as ‘I have checked all of your neighbours’ water heaters; your neighbourhood seems to have particularly bad water heaters.’

4.     High Reward & Low Risk.

Pay attention to your gut! If something seems too good to be true, it probably is. The potential reward for these criminals is high for very little risk.

5.     Payment Up Front.

They want the money right away, not later.

How to Avoid Becoming a Victim

1.  Follow up with contact info that you find yourself.

Don’t rely on the text displayed on your caller ID, even if it says your bank’s name; fraudsters can change the caller info that comes up on your phone! Yikes!

2. Don’t rush decisions / do your homework.

If someone threatens you with a time limit, it’s a fraud.

3. Don’t let people into your home.

Stand your ground, it’s your home and you have the right to say who comes in and who doesn’t.

4. Don’t share personal information, no matter how meaningless it may seem.

If the person is legitimate, they won’t mind your precaution.

Scam artists are sneaky

They look like you and me  – often they look professional and have impressive offices/addresses and they are very good at what they do!

Examples of Common and Current Scams

1. Someone claiming they are from the Canada Revenue Agency contacts you asking you to pay your taxes right away.

This is the most common scam every year because people keep falling for it.

2. Emergency

Someone calls pretending to be someone they aren’t saying there is some kind of emergency and  you need to respond quickly. This is also called the “grandparent scam” as the elderly are often targeted.

3. Advance Fee

You’ve won a prize but need to send money in advance.

4. Misleading Prize Offer

You win the lottery or  a prize for a contest you didn’t enter.

5. Romance

This is the most profitable scam and can happen online or in person. Someone pretends to fall in love with you; then they ask for money, often more than once.

6. Non-Existent Charity

Someone asks you to donate money to charity using a recent, real life tragedy to make them sound credible. If you want to donate, reach out to the charity of your choosing using contact information from a reputable source.

7. Account Info Update

Someone contacts you to update your information.

8. Online Purchase

You as the seller: an interested buyer (intentionally) overpays. The buyer claims they made an error & asks you to send back the difference using an untraceable method (i.e. wire transfer). The payment ends up being fake and you lost your money.

You as the buyer: you don’t receive the item(s) you paid for.

9. Door to Door

Someone claims  they need to enter your home to check or service something that you had not arranged (i.e. furnace, water heater, duct cleaning service, etc.).

Many types of door-to-door sales are now illegal.

Know about your rights regarding door-to-door sales and home service contracts, read more about Ontario’s regulations concerning door-to-door sales, HERE.

Phishing

Phishing happens when cyber criminals trick you into giving information. When you respond, they get access of your accounts or download ‘malware’ to your computer. Here are some tips to prevent being a victim of phishing: And importantly, if you receive an e-mail you don’t trust, delete it without opening it!

Phishing Scam Examples:

1. The Email Scam

Clues that it’s a scam:

• The spelling of the sender’s address doesn’t make sense.
• Generic/non-personalized greeting.
• A link to click on.
  • Careful, the listed link isn’t always the actual link!
  • Hover your cursor over the link beforeclicking it to make sure the links match; if they don’t, don’t click on it!

2. The CRA Scam

Clues that it’s a scam:

• Generic/non-personalized greeting.
• The dollar sign is on the wrong side of the numbers.
• A link to click.
  • Clicking it could cause malware to be downloaded onto your computer. Uh oh!

How to Tell If you’ve been a Victim of a Scam:

• You notice unexpected changes in your account.
• You receive credit cards you never applied for.
• You receive notice that you have been denied credit that you didn’t apply for; or, you are denied credit for no apparent reason.
• You receive correspondence from debt collectors.
• Credit report shows accounts that aren’t yours or contains inaccurate information.
• Bills or statements you still receive by mail stop coming.
• Unsolicited proposals come more often.
  • This is because fraudsters sell information of victims to other fraudsters.

Who to call if you’ve been victimized 

Toronto Police: 416-808-2222

Canadian Anti-Fraud Centre: 1-888-495-8501

Better Business Bureau: 519-579-3080

Check your credit with a credit bureau you trust.

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Julia Renaud is a very talkative ABI survivor with a passion for learning new things, trying new activities, and meeting new people – all of which have led her to writing this column. When not chatting someone’s ear off, Julia can be found outside walking her dog while occasionally talking to him, of course!   

 

How functional MRIs can detect brain injury when other scans can’t

BY: AMANDA FORESTIERI

Individuals who suffer from mild to moderate brain injuries often have long-lasting debilitating symptoms, despite the brain appearing ‘normal’ on structural MRI or CT scans.

BIST Social Work placement student Amanda Forestieri, sat with neuroscientist Dr. David Corey, to discuss his work with functional Magnetic Resonance Imaging (fMRI).

Dr. Corey has worked with and treated individuals with chronic pain, PTSD, and mild to moderate TBIs for 40 years. He has worked in interdisciplinary teams, and with many patients who have struggled to prove they are experiencing TBI symptoms. Dr. Corey says this is likely due to metabolic changes in the brain, or changes which are too microscopic for a structural MRI or CT scan to pick up.

Functional MRI’s versus MRI

The functional MRI (fMRI) focuses on oxygen atoms, to give a rough measure of the metabolic activity of the cells in the brain. The fMRI looks primarily at how the brain is functioning, whereas the standard MRI assesses structure only (eg. tumors).  

How the FMRI Works 

The fMRI detects the blood flow in a particular area of the brain when the patient is asked to perform a task. Doctors are able to see if it functions in the same way as in a brain without an injury. Individuals with a brain injury are tested in an activation paradigm, meaning that the individual is asked to perform a task in the scanner as opposed to a resting state. The task is called the Tower Task, and individuals are asked to sort coloured balls in different containers on a screen.

Dr. Corey has noticed different activation in the brain of someone with a brain injury. The brain injury population loses synchronicity between the two hemispheres, and there is more activation in certain parts of the brain compared to a non-injured brain when performing a task. A statistical test is then done to determine whether the patient’s brain function falls into the “normal” or “abnormal” range. This image displays a control groups’ scan vs. someone with PCS (Post Concussion Syndrome).

Patient with PCS (Left) Control Group (Right)

The above shows widespread activation in the brain of a patient with PCS. More research is being done as to why this is the case.

The fMRI can be used as a tool to show evidence of brain injury and clarify diagnosis. It is another tool to show verification that brain function is “abnormal” in a person who experienced a mild to moderate brain injury.

In order for individuals to prepare for an fMRI, one needs to be medically cleared for a standard MRI and be able to lie still for at least 10 minutes at a time. Claustrophobia is something else to keep in mind, as the fMRI is in a closed environment. To conduct an fMRI, patients can’t take medication, such as tranquilizers, before the scan, but many people can learn some calming techniques to manage anxiety.

What is fMRI currently being used for? 

FMRI equipment is expensive, and its analysis is highly complex. Currently, few doctors are trained to understand the data. It is not funded by OHIP at present, nor is it used widely for clinical purposes.

Having said that, Dr. Corey believes that in the future the fMRI may be brought forward as a clinical tool.

“When you produce an objective measure of something, people pay attention to it, especially in the medical profession,” Dr. Corey said. As of right now, fMRIs are mostly being used in a medical-legal context. However, it is exciting to think about the technology that one might see in the future for those with a mild to severe brain injury, allowing those, individuals to receive better diagnosis and treatment. More information is available on Dr. Corey’s work and his contact information on www.brainscaninc.com.

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Amanda Forestieri is a passionate 4th-year social work student who hopes to work in social services. When Amanda is not in school, you can find her reading a good book, going for walks or singing and creating music with others. She wants to one day be known as the singing social worker!

 

Yoga Brain

BY: ALYSON ROGERS

Before my brain injury, I was convinced yoga wasn’t for me; I was a year-round athlete and long-distance running legs were not yoga legs in my mind.

After my brain injury, I was convinced yoga wasn’t for me; I went to a few classes and struggled to keep up and do the poses.  I usually left with a headache and feeling defeated.  Ten years and 6 concussions later, I practice yoga everyday – both on and off the mat.

In 2017, a bad concussion completely changed my lifestyle. In under a year, I went from an active person who went out for drinks with friends after work, to someone who stays home due to fatigue and symptoms; someone figuring out a new life on medication and alcohol-free.

I’d like to say there was some magical movie moment where I wandered into a yoga studio and found my place, but in reality, I dusted off the yoga mat I never got around to donating and rolled it out onto my living room floor because I had nothing else do to at home.  I remembered poses I had learned in classes and did simple stretches. I was pleasantly surprised at how good I felt afterwards and kept coming back to my mat. I’d found a practice that didn’t hurt my brain, but benefited it.

Fast forward to November 2018. I was searching Myrtle Beach for a yoga mat while I was on vacation because I couldn’t imagine going four days without one. Yoga had become a huge part of my life. I practiced at least 3 times a week, was seeing improvement in my flexibility, recognized how good yoga made my mind feel, developed an interest in spirituality, began exploring meditation, and was reading yoga books, including Yoga Girl by Rachel Brathen and Yoga Mind by Suzan Colón.

The physical and philosophical aspects of yoga did more than make me flexible and centre self-care in my life; it helped with my concussion symptoms and how I feel about having a disability.  After I started practicing yoga, I noticed improvements in my concentration, balance, spatial awareness and other physical symptoms. I also saw improvements in my mood and overall mental wellness. Learning about the philosophical tools of yoga allowed me to have a healthier and honest perspective of my current concussion issues, and having a brain injury in general. I’d found something that was both beneficial for me, and that I could do no matter what symptoms I was experiencing on a given day.

I’ve written about my brain injury for years and decided I would write about the benefits of yoga for brain injury in the hope of helping other survivors, but I didn’t. If I was going to do this, I would have to be honest about the emotional and mental symptoms of brain injury I had experienced; I was ready to write about it but not attach my name and face to it. Stigma lives on and it was staring me in the face; what if someone from my workplace saw it?  Would people think I’m “crazy”?  Would I be taken less seriously?

This is how Yoga Brain came to life on Instagram (@yogabrain).  I created an anonymous account to talk about yoga and brain injury. At first, I didn’t show my face in any photos; if someone I knew saw it, they would know it was me, so it stayed hidden for quite some time.  Slowly, I started to show me face, and 6 months after creating the account, I put my name on it.  The shame and embarrassment I felt about brain injury symptoms I had never talked about faded away, and I was ready to be a face for more than just physical brain injury symptoms.

Since creating Yoga Brain, I’ve had the privilege and pleasure of connecting with brain injury survivors, yogis, yoga teachers and organizations all over the world. I was invited to be a guest on the Concussion Talk podcast and have been featured by Can Recover, Beyond Concussion and Fierce Calm. Brain injury can feel like a lonely place, but by putting myself out there, I’ve learned from others and used my experience to support other survivors.  My posts document my yoga journey, brain injury journey, and my new life that includes travelling (something I never thought I’d do after my brain injury).

Yoga Brain and my love for yoga took me on a journey I never expected. I recently finished my 200-hours Yoga Teacher Training Certification…in California.  I’m not sure where this will take me next, but I can’t wait to find out.

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Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.

 

 

 

 

 

 

 

Choosing to parent after brain injury

BY: MELISSA JIROVEC

Parenting is hard work. It challenges you in ways you never imagined you’d be challenged, forcing you to think outside the box and re-evaluate everything you thought you knew about pretty much everything.

Add a brain injury to the mix and the experience becomes even more complex and interesting.
 Jason and I always knew we wanted children. We discussed and imagined what our future family would look like long before it was time for us to actually consider making it happen. When Jason regained his awareness after sustaining a traumatic brain injury, both of us agreed that a family of our own was an even bigger priority. At 24, we’d become aware of our own mortality and felt willing to attempt the uphill battle we faced, adding parenthood to recovery for him, and caregiving for me.

Fast forward four years and two children later, and we’ve learned a lot about parenting and brain injury. We’ve encountered many challenges, and reaped many rewards. The biggest challenge has no doubt been fatigue. Parenthood is exhausting in and of itself, but the fatigue my husband experiences makes it hard for him to fully participate as a parent.

There are many times throughout the day where Jason needs to escape downstairs for a nap, downtime on his Xbox, or do laundry to get away from the noise and stimulation. This is hard on me as the parent who must care for both children alone.

Our toddler is also incredibly observant. She picked up early on that her Daddy is not able to keep up with her, that he struggles physically to dress or change her, and that he often gives up if she gives him too much of a hard time because of his impulsivity and lack of patience. She uses this to her advantage at every opportunity. The baby is now starting to move around quite a bit and no longer sits still long enough for Daddy to change and dress him. However, of the two, Daddy definitely does better caring for our younger child.

 When things get rowdy around the house it takes a toll on both Jason and myself. Jason struggles to stay focused and calm, while I struggle to corral the kids on my own. Truthfully,  I sometimes feel resentment.

This is why I work hard to maintain my mental, emotional and physical wellness through journalling, affirmations, meditation, goal-setting, strength training, and getting fresh air often. Jason and I both find it crucial to maintain good nutrition for our mood and energy, in order to function well as a family unit. We are also continuously improving the way we communicate, trying our best to ensure that we are being open and honest with each other so as to problem solve as effectively as possible. We are committed to seeking improved personal growth and increased knowledge.

But as challenging as parenting in our situation can be, the benefits of becoming parents far outshine those difficult moments. For example, both of us have become more efficient with our planning and organization. We’ve learned to laugh at the little things. We thoroughly enjoy new experiences with our children and watching their little faces light up. We’ve both begun to challenge our belief systems and have started really questioning our lifestyle and what messages we are sending to our children.

How do we want to raise them? Are we showing them to be compassionate to others and the planet? We’ve realized that the only way to raise smart, kind, compassionate, grounded, aware and successful children is to do our best to model that ourselves. We are both working on that every day.

 In the end, parenting has been everything we hoped it would be and more, despite the added challenges we face. Those challenges have made us stronger and better parents.

I’ve begun to let go of the idea that parenting should be 50-50 between Jason and I, because despite knowing that it wouldn’t be going in, a small part of me still felt frustrated when he couldn’t step up and I knew that was up to me to fully accept.

The brain injury isn’t going away. But we are slowly learning tricks and strategies to help things run smoothly from day-to-day. Brain injury recovery is a lifelong journey, but having something to work hard for has pushed us into seeking the best way not just to survive, but thrive.

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Melissa is a caregiver to her husband Jason who lives with a traumatic brain injury, and their two children Emma & Liam. She has authored two books, one an autobiography of her journey as a caregiver titled: ‘Getting Out of the Rut’,  as well as a children’s picture book that promotes awareness of brain injuries titled: ‘My Daddy’s Brain’. She is currently working on a third book, training for a fitness competition, and speaks to various groups about caregiving, brain injury, communication, self-care and resilience. You can follow her journey on instagram @fit.mindful.mom or visit her website at www.melissajirovec.ca.

I. Am. Awareness.

BY: MARK KONING

Here we are into the month of June and Brain Injury Awareness Month.

Every year I wonder of its impact. What minds are being awakened and new things learned? Do people come to an understanding of what it’s like to live with brain injury? Are folks even paying attention?

Are all of those awareness campaigns ever enough?

Over the years I have attended various conferences, and volunteered as a peer support mentor. Of all the survivors I meet and all of the voices I listen to, the common theme I hear over and over is of people feeling alone and misunderstood.

I am misunderstood, often. I feel like people hear me, but don’t listen.

“Hello, is anybody out there?” I want to scream. “Do you get it?”

But when I really think about it, contemplating my own thoughts and replaying conversations, I realize: isolation is not winning. Hopelessness and ignorance do not always come out on top. People care, learn, and adapt.

I am a graduate, I am honoured with diplomas, I own a home and have a good job. From everything I have accomplished, and through all of the challenges I have faced, I have learned.

As a brain injury survivor and advocate, people applaud my presentations; they enjoy my blogs and value my mentorship. A written memoir of my life and challenges with brain injury has gotten respect and admiration.

I. Am. Awareness.

Everyone who speaks up and moves forward is awareness.

Life is awareness. It is happening all of the time, more often than we, or I, may think.

Is it enough? I don’t know the answer to that. Is there ever a time we should stop moving forward? To stop learning and teaching?

Helping to create brain injury awareness is part of me and who I am. It is part of a lot of us. And it is all of OUR legacy, being aware, creating hope, understanding, and inclusion.

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Mark’s passion to lend a helping hand, offer advice and give back, has developed into a moral and social responsibility with the goal of sharing, inspiring and growing, for others as well as himself. His experience as a Survivor, Caregiver, Mentor and Writer, has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com.