What can’t we say about Ellie Lapowich? Not only does she sit on our Mix and Mingle Committee and is a proud BIST supporter – but Ellie also manages to be one of our (if not the top) fundraiser at our 5K each and every year. We challenge you to take her on and see if you can beat her fundraising amounts this year!
That’s just one reason why Ellie is an ABI Hero – read more about her below!
I have had the privilege of working with people who have sustained brain injuries for almost twenty years now. Since 2004, I have owned and operated Innovative Case Management Inc. (ICM), which is a community-based company that provides case management and occupational therapy services, as well as Catastrophic and medical legal assessments.
Why do you participate in the BIST 5K?
I have participated in the BIST Run for the past several years because it is a great event that raises much needed funds for the wonderful programs offered by BIST. It is amazing to see such a great turnout year after year as members of our community, along with their families and friends (and often pets), cover the 5k while enjoying the camaraderie this event promotes.
What does being a hero of brain injury mean to you?
I think the real heroes of brain injury are our clients who have sustained these injuries and work incredibly hard every day to overcome the many obstacles they now have to face. I have had the good fortune of meeting some amazing people who are true inspirations. I believe that our clients’ loved ones and caregivers are also heroes.
What is your favourite part about Race Day?
My favourite part of race day is watching brain injury survivours triumphantly cross the finish line.
Jenn Bowler is a social worker in the Trauma Program at Sunnybrook Health Sciences Centre and is a member of the BIST 5K Run, Walk, & Roll Committee.
Do you ever think, what would you do if your spouse was in a serious accident?
Who pays the bills? How are they paid? Do you have access to your spouse’s bank account?
And the big question: do you have a will and power of attorney (POA)? Do you know where they are?
If you answered ‘yes’ to these questions, I applaud you. You are prepared.
Regardless of our age, many of us think we’re too young to worry about the practical details of what would happen if we or our spouse were suddenly seriously injured or deceased. These are difficult topics to talk about, and we are like to think ‘it’ll never happen to me’. That’s what my husband, Norm, and I thought.
One day, we drove past a place that did wills and power of attorneys. Norm said, “We don’t need a will and power of attorney.”
But something in me felt differently, and I insisted we get them done.
I am so glad we did. A little while later, on Thursday, April 28, 2011 things changed for us forever when Norm was in a very serious car accident.
The pickup truck he was driving was T-Boned and ended up underneath a tracker trailer.
Norm was only able to mumble his name and where he worked before he lost consciousness. He was air lifted to Sunnybrook Hospital from where we live in Guelph. He had several broken bones, and we were soon to learn, a traumatic brain injury.
Until then, Norm lead a busy life. He worked at the firehall and had a radio show. He was, and continues to be, a Kinsmen.
Norm’s injury changed my world in countless ways, including the practical ones. Until then, he had been the bill payer and, in large part, the provider. In an instant, those duties became mine. I had no idea what to do, and I needed to find our POA.
All of our bank accounts and bills were under Norm’s name, and I needed the POA to gain access to them. Without the POA, who knows how long it would have taken before I could start to live and pay bills.
I am very grateful Norm listened to me that day when we were out for a drive. I am glad that our wills and POA were in effect. If we had just said, “Oh, that’s just for old people,” and drove by, I would have been in a heck of a mess.
After hearing my story, what are you waiting for? Are you prepared?
Please don’t wait, tomorrow, may be too late.
After her husband’s injury, Theresa went back to school to become a Personal Support Worker. She has taken courses in brain injury, and is now a full time caregiver. You can follow her on Instagram, HERE
BIST members had the opportunity to learn about Team Theraputix’s ODSP Program – which allows people on fixed incomes to receive physiotherapy for just $50 a month – at a Community Meeting last fall.
At our meeting, many of us were amazed at the generosity of the program, which was created to ensure people who would otherwise not be able to afford crucial physiotherapy services, access the support they need. Many of Team Theraputix’s clients have brain injuries.
Like any private physiotherapy clinic, Team Theraputix is a business, they need to watch their bottom line in order to survive. But their ODSP Program literally puts people before profits. How often do you see a business do that?
Now Team Theraputix needs your help – they are being forced to raise the cost of their ODSP program due to financial constraints. They don’t want to. As many of us know too well, when you’re on a fixed income, literally every penny counts.
Imagine, for a moment, that you or your loved one have sustained a traumatic injury. Imagine getting that phone call from the hospital or being rushed there. Imagine that your family is in a state of crisis, but doing everything to keep it together. Imagine that conversation with the doctor when you are told that your life will never be the same again.
Fast forward to the discharge from the hospital. There is nothing else they can help you with. You take a few days to settle into your new life. You start making phone calls. You realize that OHIP will not take you very far. You realize that your journey will be very difficult.
You finally find a private rehabilitation centre which can offer you assistance in your recovery process. You become hopeful. Now, imagine seeing how much this new hope will cost you and suddenly your heart drops into the pit of your stomach. You realize that you do not have that kind of money. Imagine feeling that disappointment while pushing back tears.
Team Theraputix in action (Photo courtesy of Victoria Tolmatshov)
I have sat across the table from too many individuals to count who are in that very situation. My heart broke watching them leave my clinic knowing that there was nothing I could do to help. Constantly reminding myself that this is a business and there was a fee for services- just like everywhere else. I stayed awake at night thinking about these people. Rehabilitation is just one of many things a person with a traumatic injury has to deal with and there weren’t any options available to make the process easier.
In January of 2014, after another meeting with a family unable to pay for our program, I decided that it would be the last time I ever disappointed someone in need of help.
I started doing my research and found that most people who were unable to afford private therapy were receiving Ontario Disability Support. I was shocked to find out that the maximum funding was just over $1100.00 per month. I realized that we live in a society where many people in a vulnerable situation just fall through the cracks and do not receive adequate support from the government.
I decided to make a difference. I created a low cost physiotherapy program for those receiving ODSP. The program offers one on one physiotherapy two to three times per week (eight to twelve per month) for $50.00* per month.
I am unbelievably proud of this program and all of our clients who have made amazing progress finally getting the help they need and deserve.
I am happy to know that we can now offer people options and I am overjoyed knowing that I will never have to disappoint someone in need of my help again.
*Victoria wrote this piece before needing to change the fee structure of the program.
Victoria Tolmatshov is the owner of Team Theraputix
Support The Team Theraputix OSDP Program!
Barbecue – Saturday, August 5th, 12-4 pm, Register HERE
Seven years ago, Shelley’s family survived what should have been a fatal carbon monoxide leak in their house. She writes how her faith has helped her family survive and thrive in the seven years since.
In the blink of an eye, so many memories vanished. I wish I could have chosen which memories I could keep and tossed out the ones I wanted to forget. I know the memories which remain are what make me who I am today. I would be a different person right now breathing, talking, and living if I didn’t retain some of the things I lived as a child and as a young adult.
Valentine’s Day 2010 would turn into a complete game changer for my family, a day we will never forget. I’ve documented this day in words so if the day comes that the memory is gone I can always, reflect back on our second chance at life.
We were experiencing a Texas Winter and the six inches of snow which covered our town knocked our power out for three days. Fed up, on the third day we ran a generator out in the front driveway with the garage door and windows open. The Fire Chief later told us that the lack of wind and frigid air that day meant the gas settled into our home via the eave troughs instead of blowing away.
That night, my daughter, Taylor, woke suddenly to someone screaming her name. She jolted up in bed, tried to stand and quickly realized her legs wouldn’t hold her up. She fell to the floor.
From there, she crawled to her door and tried to stable herself but couldn’t and collapsed again, all the while having the frightening feeling of tunnel vision where you can’t really hear or see.
The thud of her fall woke me up and I ran to her. My then husband, Charlie, heard from the living room and he and I met at her doorway and found our daughter lying, lifeless and facedown. Not knowing what’s wrong with your daughter, when its too dark to even look her in the face is the worst thing I have ever felt.
Charlie was shaking her and trying to get a response. He sent me to get a flashlight that was on my nightstand. We were beside ourselves with fear. On my way to the bedroom, I started feeling as though I was losing control, and as the seconds passed I knew I had to let Charlie know something was seriously wrong with me. I had the flashlight in hand, and started running back to the hall, but the closer I got to Charlie, the further away he seemed. Everything was spinning out of control and I was losing awareness of where I was.
I knew if I didn’t make it back to him he wouldn’t know to come find me. When I turned the corner to the hallway I collapsed face first without my hands or arms to brace me, falling onto the metal flashlight and cutting my forehead open, exposing the skull. Charlie was searching in the dark for the flashlight as it had rolled when I fell and I was trying to tell him I felt blood running down my face. Things were completely out of control.
Once he found the flashlight, with one look he said he had to get me to the hospital. I said, “What is wrong with Taylor, doesn’t she need to go?”
Somehow in my head I knew she had started this whole ordeal and my mommy intuition kicked in. I was more scared for her than me!
Meanwhile, Taylor was drifting in and out of consciousness. Charlie managed to wake her, and told her she had to go get a towel to put on my head to help with the bleeding, which was now pulsing out of control from my head. We were all covered with my blood. How she made it to the bathroom to retrieve a towel is beyond any of our comprehension.
Immediately after she returned, Taylor lost consciousness again. Charlie dragged her over and propped her on top of me, against the wall as I was having convulsions and banging my face into the floor. My eyes were rolling back in my head, and Charlie yelled at me not to die on him.
Charlie called 911 and first to respond were the police. They used their flashlights and the first thing they saw were my bloody handprints in our hallway where I tried to stand, and Charlie covered in my blood. Needless to say, they turned their suspicions onto Charlie.
Shortly after the fire department arrived, and the Fire Chief began asking different questions. Charlie explained we were using a generator and immediately the Chief went to the truck to get the carbon monoxide detector. The truck was parked at the street and within steps of entering our driveway the readings on the detector began to rise quickly, so much that the Chief went back to the truck to recalibrate the device as he was not believing the high readings. Once again, walking in the driveway up to our front door the readings began to creep higher and higher. Upon reaching the door he called for his crew to exit the home and began to get Charlie, Taylor and our dogs out. A couple of paramedics were left inside with me to get me stable enough for transport to the hospital. Once outside, they realized that Taylor had “started” this whole incident and the firefighters told Charlie they wanted her checked out as well. I left by ambulance and Charlie and Taylor in his truck.
On route to the hospital, through nothing other than God’s grace, Taylor made some of the scariest and bravest phone calls she’s ever made to my sisters alerting them of what had happened and seeking their immediate help. She was much too young to understand what was going on or what was wrong with her mom, she just knew they had to get there quickly!
Several firefighters went above and beyond the call of duty and stayed at our home to open windows and stay and watch our dogs for sickness and make sure they were in a safe place before leaving.
Once at Mansfield Methodist Hospital they checked mine and Taylor’s blood gases and they were “through the roof”. Worse, my daughter’s levels were much higher than mine.
They began preparing us to be transported to Dallas Methodist Hospital to get in their hyperbaric chamber. First my head had to be stitched up, 15 stitches total, and I had to have a CT Scan to make sure I was transportable. Then off we went, on the ice, Taylor and I in the ambulance, her sitting and me on a stretcher both with oxygen on.
Upon arriving at Dallas Methodist Hospital, a doctor explained the procedures for going into the hyperbaric chamber, which was difficult to understand considering everything. I must add that at some time after our arrival we found out that the family which had just been in the chamber all died, except the father!
I was terrified for Taylor and myself! Taylor and I are both very claustrophobic, but we are survivors after our approximate three hour stay in the hyperbaric chamber.
Two Ambulance rides, one CT scan, two blood gases, two Hyperbaric chambers, 15 stitches and one concussion later, we survived! Nothing says ‘I love you” like a brain injury on Valentine’s Day.
Shelley’s dog Cruella
Shelley’s dog Gaby
My sister, Kimberley, moved in with us for about a month. Physically I was trying to heal my head, but mentally I was left with a traumatic brain injury. I started over with kindergarten flashcards, looking at an apple and saying library, and my friends and family completed most of my sentences. They scooped Taylor and I up and helped us heal.
My neurologist told me that people don’t survive what we went through and there really aren’t patients like Taylor and I. He said he didn’t know how to treat me. I cried and he was visibly shaken. Through his honesty, he became a great comfort to me as I struggled with memory and cognitive skills. We became a little closer that day and I knew he had chosen the right career.
On another of my early visits, he took his hand and made a fist and began knocking on my forehead. He said the poison goes into your brain and destroys whatever it attaches to and we have no control over what functions it destroys or limits.
To this day, my short-term memory is horrible at times, and I’ve lost so many precious memories.
Taylor and I have a saying when it comes to trying to remember things, we just look at each other and say, “Did we have fun?”
The one who remembers says to the other, “Yes, we had fun!”
That’s all that matters. But, to be alive, in whatever capacity, is amazing! I continue daily to deal with migraines, balance, breathing, vision, memory or the lack thereof. These are daily struggles for both Taylor and I.
I have fallen more times than I’ve stood, and had injuries that ranged from Band-Aids to orthopaedics visits. For six years, my greatest challenge was breathing, but now I struggle with a chronic migraine. Right now, I am close to 100 days straight of my head hurting. Every day at some point I struggle to breathe and coughing has become my norm. Some days are better than others. Sunny days are my friend. On cold, wet days I lean on my faith for every breath I take.
The more I talk the worse my coughing gets and I talk so much for work. Recovery continues every day for me and Taylor and luckily her Dyslexic brain is used to accommodating skills and this continues to be her saving grace on a daily basis. She is young, so strong, her faith is incredible, and healing has come differently for her, but memory and migraines are big battles for her. I’d love for you to pray for her right now.
Many days are challenging and bring a stream of tears but I try my best to remember that God knows the plans for me and Taylor. He knew the breaths that would follow would bring challenge, He knew this, He knew. Through it all, truly through it all I will trust Him.
God used this disaster to dissolve a broken marriage and link my life with the most amazing man, through merging tears, broken hope, and many answered prayers.
Taylor Trammell graduated in May with her Associates degree and will soon be an American Sign Language Interpreter.
Shelley Taylor will publish her book, “With My Last Breath, I’d Say I Love You: When your FAITH and HOPE slip, GRACE wins every time” March 1, 201
After my concussion, I lived in ‘stimulation jail’ for several months (and, when my symptoms require it, I still do.) The boredom I felt was at times more insufferable than the plethora of pain and other concussion-related symptoms I experienced.
During the acute recovery phase of a brain injury, patients are often instructed, quite literally, to do nothing. Some endure this ‘jail’ for a few days to weeks. Others remain confined for much longer with no foreseeable end in sight.
I would risk worsening my symptoms just to do something, anything to help pass the time. My family would then get angry at me for overexerting myself. I didn’t know how to explain to them that boredom was causing me real pain and suffering. They assumed that I was exaggerating, until now.
Subjects were placed alone with their thoughts in sparsely furnished rooms for 15 minutes. As to be expected, most of the subjects indicated that they did not enjoy “just thinking” and preferred to have something else to do.
What surprised the investigators (but not me), was that a majority of the subjects preferred to have an unpleasant activity than no activity at all. Prior to the start of one experiment, male and female volunteers received a single electric shock.
42 volunteers said that they would pay money to avoid being shocked again. However, when those same volunteers were left alone for only 15 minutes in a room devoid of distractions other than the option to receive electric shocks, 67 per cent of the males and 25 per cent of the females chose to self-administer at least one shock.
So the next time someone invalidates your experience with boredom or confinement, you can smile and politely tell them about this study.
Mind Yourself with Alison is a collection of self-help tips, research, and personal experiences dedicated to helping people thrive after brain injury (or other trauma). You can read her other articles HERE.
Welcome to the first article in my new column, Mind Yourself with Alison. This column is about how you (or someone you care about) can thrive after a brain injury. I will focus on self-help tips, research, and personal experiences. Why? Because all the time and treatments in the world won’t be enough if you don’t recover mentally, as well.
“You seem fine to me,” may be one of the worst things to say to a brain injury survivor – or anyone with a hidden disability – for that matter. This invisibility is one reason why Laura Brydges, an Ottawa woman living with the affects of brain injury, decided she need to do something to make hidden disabilities, visible. (You may have caught the recent Toronto Star article about her from a few weeks back.)
Since that article, Brydges’ Hidden Disability Facebook page has hit 5.2K likes. She’s getting attention from organizations, individuals and media from all over North America and the U.K. But a really big moment was receiving a photo of someone from the U.S.using one of her cards.
“I have been overwhelmed. I can’t even describe the emotion,” Brydges said. Seeing that photo just touched me to the core, it made it real.”
Brydges stresses that making hidden disabilities visible is a safety issue. She lists incidents where not understanding hidden disability can have deadly results. There was a child with autism in the U.S., she says, who was shot by the police. In Ottawa, there was a child in school who has handcuffed because of misunderstanding a hidden disability. In Winnipeg, there was a veteran with PTSD who was physically kicked out of a bar because he had a therapy dog. Brydges finds these stories and posts them on her Facebook page, collecting articles which prove her point, time and time again.
Like many brain injury survivors, Brydges faces significant obstacles in her daily life, most of which are hidden. She has problems concentrating and has a low tolerance for noise or bright lights. She cannot drive or use public transit. Being in a large crowd for more than a short time can cause her to become, what she refers to as, cognitively overwhelmed, sometimes to the point of tears.
Especially in the years right after her accident, Brydges says she couldn’t trust herself to be able to respond to an unexpected situation. For example, if someone on the street was having an emergency, she would have difficulty in processing information, to, for example, call 911. A frustrated first aid responder trying to enlist her help, repeating the message to her faster and louder to her would only make it worse.
Which is why, using nothing more than an interest in desktop publishing and sheer determination, Brydges designed a symbol consisting of a blue and white figure inside a circle with the words Hidden Disability on wallet-sized cards.
Similar to the international symbol of accessibility for those with physical disabilities, the card is something Brydges feels could be used by those affected by hidden disabilities such as brain injury, autism or epilepsy. She calls it ‘a self-advocacy tool’ people with hidden disabilities can use to educate the public on the obstacles they face every day.
Brydges began working on her hidden disability symbol in 2009. A year later, through Facebook, she found 592 adults to participate in an online survey about whether there was a need for a hidden disability symbol. The result: 80 per cent of the participants (the majority of whom had a hidden disability) agreed an international symbol was needed. A few years later, Brydges asked for feedback on how to develop the symbol, which originally was a checked figure. She changed that design after learning some people had difficulty processing it.
Brydges believes there’s a need for a hidden disability symbol, and the time is right for it. “I think people with hidden disabilities are ready. They’re tired of either living very small lives and not explaining themselves or having to explain themselves over and over again when they go out,” Brydges said. “They’re tired of people treating them poorly to the point of verbal abuse and sometimes to the point of physical abuse when they park in an accessible parking spot. Even though they have a permit. I think it’s just time.”
The hidden disability symbol could be her design or someone else’s, Brydges is all about the cause, and willing to let word about the symbol spread organically. She’s made the symbol available for download, with some stipulations, and is working on improving its print quality. The front of the cards can have the name of the condition on the bottom and the back can be customized to meet specific needs of each condition.
Brydges also believes organizations which serve people with hidden disabilities have to work together. “We’re stuck in this model of ‘I have this condition’ and ‘you have that condition’ instead of ‘when we’re out, these are the common problems with environments that aren’t highly conducive to our functioning,” she said.
Inspired? Brydges thinks Hidden Disability awareness would spread even further if she could get on The Ellen Degeneres Show. You can help make that happen by filling out this online form here.