“In my eye appointment today, I learned something interesting. Apparently, I blink extremely infrequently, The doctor suggested that lots of people must think I’m staring at them. That may be the answer to why so many people are very annoyed with me for no reason that’s understandable to me. I suppose that could unfortunately mean that in addition to telling people that I’m a crackpot with unreliable information retrieval ability, I’ll have to also say that I’m inadvertently blinkless. Good grief!!”
When I stare at you, please don’t take it wrong!!
– Marilyn Macmillan
On Saturday, January 17, 2004 Janko was out with some of his friends in London after coming home for the Christmas holidays from Fordham University in New York, where he was attending on a full soccer scholarship.
It was the night before he was to fly back to New York to resume his studies when the car he was in hit a patch of black ice and spun out, crashing into a telephone pole. Unfortunately, the point of impact was precisely where Janko was seated in the back seat.
Although his memory of that night is gone, Janko thinks he saw the pole coming because he turned his head and hit the headrest of the seat in front of him, smashing the bones in his face and skull. He also sustained a stable fracture of the C2 vertebra and his pelvis as well as a broken right ankle.
He was rushed to the hospital with a Glasgow coma scale rating of 3. The doctors were not optimistic about Janko’s survival. They told his family that if he survived the first 48 hours, then they’d talk about what steps to take next. He did survive and after much discussion, it was decided that Janko would require surgery for the compound fracture of his femur, which was worrisome because it had broken through the skin and there was chance of infection.
Janko survived that surgery only to have another to alleviate his inner cranial pressure by removing his forehead bone. This entire trauma resulted in a traumatic brain injury and it has changed Janko’s life significantly. Before the accident, Janko was extremely active playing basketball, football and his favourite, soccer. His relationships have also changed.
His relationship with his mother has strengthened because the love and support shown to him by his mother and family in general motivated him to keep going. However, he says that 95% of his friends prior to the injury have moved on, but he says he has made new friends that are more understanding at Cornerstone Clubhouse and in the brain injury community in general.
Janko says that he is most proud of returning to Fanshawe College and obtaining a certificate in General Business and his new responsibilities as the Member who oversees The Scene publication at Cornerstone Clubhouse. Janko is motivated by his desire to keep improving and proving wrong the people who doubted his capabilities .
Instead of playing sports, which he can no longer do, Janko spends his time volunteering at the Brain Injury Association of London & Region once a week and he spends time at the Clubhouse twice a week, attending the Wellness group and the outings with other Members to shoot pool every other week. Janko also spends an evening and an afternoon with a rehabilitation counselor, or as Janko likes to call him, a leisure buddy.
Despite everything Janko has gone through, he enjoys all the things that he is currently involved in and he is no rush to change, however he does understand that he needs to make a couple of very important decisions to determine where his life will be in the future, but one thing he is certain about, he enjoys being alive!!
We need to buy bread and are kerfuffled by the meaningless of the advice we are given by caregivers as a guide to doing this simple task.
Rote is a way of learning by endless repetition. It is also a homonym for ‘wrote’. Rote is enacted by repetitive verbalizing, thinking and writing.
For those of us who are struggling with a degree of difficulty to retrieve information from our brain, we are advised that ‘rote’ helps us do that. That may be a fine thing to tell us, but it can be tediously boring. We can say ‘bread’ many times, we can write it out many times, and visualize paying for it at the store many times. This process can be so tedious that we wonder whether it really matters if we do get bread.
Since pencil makes the best memory, we are also advised to write it on paper, but that presents a problem. We can easily lose the piece of paper or forget that we have it to look at when we’re at the store. We are, thus, caught between a rock and a hard place by trying to carry out the advice of rote and list.
However, there are ways we can look at such types of advice to help our memory.
ROTE: Everybody, no matter how severe their brain injury, remembers the alphabet. That is because it has been etched in our mind by endless repetition, by repetitive singing of the alphabet song and by writing it out in sequence many times. Knowing the alphabet proves to anybody that rote does work!
LIST: We can carry in our pocket or purse a small blank notebook. This notebook can be used to record anything we want to remember to do. When we get to the store for our bread, we can look at our notebook and easily find what we wanted to buy at the store. When we buy it, we can cross it off our notebook so that we don’t foolishly end up buying bread later on in the day.
CUE: There is a type of memory that’s not particularly discussed. That involves visual memory. When we know we need to buy bread, we can visualize ourself at the store, picking out the bread, paying for it and putting it away where it goes at home. That visualization works. We are essentially cuing ourselves to what we need by what we see.
Thus we have solved our problem of remembering to buy bread. We can repeat it by the rote method, we can list it by using our notebook that is always with us, and we can give ourselves a cue by visualizing getting it.
While these words are focusing on buying bread, the same methods work for anything. Once you try it, you will be successful.
There’s no such thing as a problem that can’t be solved. Whatever you particular problem as a result of your brain injury, write in and you will receive advice of how to compensate effectively. Once you get into the swing of doing things you want when you want, your expectation of doing so will escalate tremendously.
With a positive expectation, most humans can do things. This is shown by the rhyme that goes: “I think I can, I think I can, I think I really can. I can do most anything if I only think I can. I knew I could, I knew I could.” It’s not whether you win or lose, but how you play the game. Play your game by trying things until something works! If you don’t try, you don’t succeed! Even though we’re not a judge, we can TRY!
Of interest, we should realize that the methods that are called rote, list and cue are used by anybody to remember anything. They are also the way students are taught by teachers to remember and babies are taught by parents to remember. With understanding that it actually works, we can be our own teachers!
– Marilyn Macmillan
I was asked to write about what it is like to be Lincon’s caregiver. First, I must tell you a bit about my son. Lincon was born October 13, 2016 and was the most beautiful baby. As he grew, he met all his milestones right on time. He loved to play outside, colour and play ball. He was the perfect baby in every way.
Things changed for us on December 22, 2017, when he was 14 months old. Lincon was not acting his usual self while he was at daycare. He had a seizure and was rushed to the hospital where it was discovered he had a brain bleed. Lincon had to have an emergency craniotomy. We were awfully close to losing lincon, thankfully that surgery saved his life.
This was the start of a long and never-ending journey of learning how to care for lincon and his new needs. Lincon has many disabilities as a direct result of his brain bleed. Most days I feel like a mom, a nurse, and a therapist. I am his main care giver, and I am responsible to do physio with him and ensure he gets all his meds. I do this day in and day out some days it is exhausting. This has been our new life for three and a half years now. Your whole world changes when someone you love has a brain injury.
Lincon is in a wheelchair full time because he has right side hemiplegia. I Do not have a lift for him, so I do all the transfers. Lifting him in and out of the tub is by far the hardest. Lincon is about 40lbs now and he is still growing. We use his walker daily and he has made some gains with it but mostly uses it for standing. Over the years Lincon has made some gains with his motor skills. Two and a half years after his brain injury he started to sit with some assistance. Now he can sit in a w position with no assistance. He can go from laying to sitting on his own but does not have the ability to stand on his own due to the right-side hemiplegia.
For a long time, it was a goal of mine to help lincon learn how to eat again. It would take me over an hour to feed him half a jar of pureed food. It just was not enough to sustain him. Then with his increasing seizures he seemed to have less and less interest in eating. I know he is getting the food he needs through his g tube so now we just have food for fun. On a good day lincon can only manage a few bits. However, he has recently learned how to drink from a straw, he may only drink half an ounce but is a skill we will continue to work on. Practice makes better but not perfect! We always stride for better.
Lincon has a g tube for all his nutritional needs. When I first learned how to set it up, run a feed and give meds I was always so fearful I would do something wrong. Now it is second nature to me. To us Lincon’s g-tube has become normal. I push his medication through a syringe 3 times a day and I have had this routine for over 3 years now. Everything Lincon eats and drinks goes through his g-tube. I set the pump up and clean it four times a day everyday. In the past I would panic when Lincon has pulled out his button. It was a trip to the emergency room every time. Now I change it at home every three to six months with out a worry. I have begun to accept that I realize that he may have a g-tube his whole life.
Some of Lincon’s disabilities I seem to forget at times. The other day we were at the doctors and they asked about Lincon’s vision because he is legally blind. He can see about 3 ft, but doctors are not sure how well he can or cannot see. Its just a habit to hold things close to Lincon for him to see them. I know that Lincon legally blind, but it was like for a moment I had forgot. When I buy toys for lincon I always buy things that have lights or make sound because of his poor vision. It become so normal for me that at times I completely forget.
I have come to accept the reality that my son might not ever have words to say I love you. All though his smile is enough for me. His laughter when I tickle him, his cry when he is upset and his yells/screams when he is excited is how he communicates. I have hoped for years he would start to learn some words. Even if his only word was mom. Its okay though because I have learned his language and I understand him.
The one thing that always reminded me that Lincon had a brain injury is his seizures. They are hard to manage with medications as he is on the max dose for each. Every morning and every night I give him his anti epileptic medications twice a day and his CBD oil three times a day. Despite the medications he still has seizures everyday. They started as absent seizures that were extremely hard to notice. Most people would not know Lincon’s was having a seizure if they did not know him. Then the atonic seizures started they were more noticeable. Lincon would just go limp for 10 to 20 seconds. Thankfully, these stopped with an increase of his medication. Then the clusters of myoclonic started. At first, he would have one every few days. They increased more and more until on a good day he would have 10 and a bad day 30 or more. So, his neurologist added a third medication to decrease the myoclonic seizures. We had a period of decreased seizures, but it came with many side effects. He was Tired, drowsy, had a loss of coordination and he drooled constantly. At one point I told his doctor I would not increase it any further as the side affects were too great. We had some good seizure control for a few months, but they came back like they always do. As seizures begin to increase again, we had to increase this medication to the recommended dose very. We gradually increased it over about three months. Every time we think we are starting to get some seizure control they come back. When they come back its like they are worse than before.
It is a difficult reality I live raising a son with a brain injury and special needs. I always wished he would just be “normal” again. I wished for years that lincon would relearn some of his lost skills. I wished for so long that he would be able to eat, walk, talk, watch TV, play with regular toys, use his right hand or even tell me when he needs to use the toilet. I love my son very much. I am at a point that I am coming to terms with our new reality, but I am scared. I fear how I will continue to care for him. Some days I worry about how I will continue to care for him as he grows. No matter what I will manage, and I will adapt. I will continue to learn the best possible way to care for lincon and help him reach his full potential. Ill care for him for the rest of his life because I love him unconditionally. Even if that means my life and dreams are on hold. As long as I am physically able to care for him.
Brain injury is very misunderstood. They range from mild to severe and are devastating to the individuals and their families. Lincons brain injury left lincon with severe disabilities. It has affected not just lincon but our whole family. I would love to see more awareness and more education about brain injuries. I will wear green for someone I love everyday this June. Let us shine a spotlight on brain injury this month!
In June 2018 and for no specific reason, I suffered an acute stroke while I was out of town. Simply put, I fell asleep before taking the wheel to drive home to Paris from Hamilton. Thankfully, I managed to make it home safely after filling up my gas tank and paying for it, while stroked, with no memory of doing any of this whatsoever.
I spent 11 and 371 days in the hospital and at home recovering respectively. My stroke was a result of a carotid dissection, a tear in one of my carotid arteries. As a result, I lost two-thirds of my right brain permanently with no hope of getting any of it back. At the time of my acquired brain injury, I was a semi-pro mountain bike racer and runner. Once admitted and fully assessed at the hospital I was given a very slim chance of walking again. But through perseverance, I am walking, riding my bike and working again. The only after-effect I have is quadrantanopia, a lesion of an optic radiation nerve.
The main thing that inspired me the most to not let the prognosis of possibly being in a wheelchair for the rest of my life at 48 years old get me down, was how encouraging and supportive my physiotherapist Joe was. I believe I would be in worse shape today had it not been for his words of support. He taught me to push the limits of the human soul in order to get myself out of the wheelchair. “Be myself, only better”, he repeated to me again and again while trying to get my legs to move and not let the stroke get the best of me. Family support was also paramount in my recovery. I also cherished having the opportunity to experience zootherapy while hospitalized. Once I was home, I dedicated my time researching anything and everything about strokes. I Googled the keywords strokes…men…vision trouble… 48 years old…etc and read as much as I could on the topic.
I knew I wanted my life back, but I realized that we don’t get what we want in life. We get what we have to have. So I started attending seminars, conventions and symposiums on brain injuries so I could learn and help myself get better and healthier. Through my research and speaking with dieticians, nutritionists and neurologists, I discovered that nutrition plays a vital role in post-recovery care. I then chose to change my eating habits and cut out most processed foods and follow an anti-inflammatory lifestyle as inflammation plays a key role in well-being. It is my belief that through self-discipline, dedication, eating well, self-care and moral support, anyone can make the impossible possible. I feel attending a support group was instrumental in getting me on the right path, so I highly recommend it to anyone even if you think you probably won’t benefit from sharing your story. In closing, please remember that life is like seasons. It won’t always be raining or cloudy, better days are always ahead.
I was 43 and had recently relocated to Saskatchewan when I acquired a severe brain injury from a motor vehicle accident. It was late afternoon and approaching dusk just before Christmas in 2003. My daughter who had just months earlier graduated from high school decided to accompany me on this work-related trip in my little hatchback. As we slowed down to the posted 80 kmph on the highway, a commercial truck proceeded across it from a side road causing me to t-bone it. Leah and I were knocked unconscious but she came to immediately while I did not. She was alert to the aftermath with both of us grievously injured and my head resting on her lap. Being trapped inside the wreckage while EMS worked for 40 minutes freeing us from the twisted metal is a memory that comes back to her in nightmares.
We were taken by helicopter to Royal University Hospital in Saskatoon where they repaired my ruptured aorta with a left ventricle bypass. During that surgery I suffered a stroke. Leah had an MRI which revealed an old acquired brain injury (ABI) during infancy when she had febrile seizures from high fever. The tell-tale sign of that old injury was seen in the prefrontal cortex. Much of it had become granular, causing learning disabilities in elementary and high school.
Leah spent the next weeks over Christmas on a separate ward while I was in an induced coma for almost 2 months allowing injuries to heal as well as a heart bypass, surgery to my broken neck and 3 limbs which had been reinforced with metal rods and screws. Finally in early July, I was released from a nursing home and able to join Leah in a newly rented apartment near the hospital. With her own pain from a broken femur, she lugged my wheelchair up and down the steps to take me for walks in the area. I finally convinced her to return to her surgeon to look at the break over a year later. The rod that had been inserted so long ago kept the broken bone aligned but the unhealed break just swivelled around that rod. It was finally wrapped and fixed permanently.
Although I had more physical injury, Leah had the emotional trauma of being fully awake and conscious of the impact and excruciating pain, the chaos on the highway, the ensuing emergency transfer to Royal University Hospital and of her mom being kept in coma in ICU. As a divorced mother, I still consider the very worst part of this accident to be Leah’s second brain injury and emotional trauma to both of my children. Their beloved grandfather passed away suddenly while we were in hospital. Her younger sister Lynn visited weekends from our home 3 hours away but thankfully a kind family supported and encouraged her to stay in the village to finish high school. That community is tight and everyone had parts in helping us through.
In the 2 decades since that accident, brain injury has been prevalent for Leah and I and we three have moved back to Ontario. Lynn was traumatized by anxiety and helplessness while having to fend for herself. Leah still has flare ups of PTSD from all that she has experienced since that day but we are thankful for our magnificent health care and support services available to all Canadians. She received therapy for debilitating fear of being in a moving vehicle and of hospital waiting rooms. The waiting room was representative of her grief and survivor guilt.
We have both changed considerably. Personality change is to be expected but that doesn’t necessarily have to be for the worse, just different. Although Leah was a bright student she had difficulties focusing and suffered depression all through her grade school years due to her first brain injury. ABI in childhood causes learning issues but the brain has a remarkable way of creating new learning pathways which Leah was able to utilize well. When the traumatic brain injury came along 17 years later in our car accident there were far more challenges for her but with persistence and support was able to complete a Social Science degree with Distinction at the Universities of Saskatchewan and Waterloo. She has a beautifully raised son and a career. She still struggles with poor memory, time management and organization.
I had previously worked full time at McMaster University and for Saskatchewan Social Services. I was an oil portrait artist in my spare time. I hiked daily along both the Niagara Gorge and in the Saskatchewan countryside for 15 years in my old life and now am unemployable and have to rely on a hiking walker. I can no longer climb hills or hike uneven trails but I can still walk along level, maintained hiking paths in the lovely community of Stratford. I live independently in my own home with the support of my daughters and two support workers.
18 months before this accident, a coworker approached me about illustrating a narrative he had written. I was thrilled to work on his vividly written story starting in the spring of 2002 and I completed 3 or 4 of the illustrations before things came to a sudden halt with the ABI. I had to relearn to paint as well as activities of daily living as basic as walking and talking. A few years later I had regained enough of my oil painting skills to show solo at the Gallery on the Bridges in Saskatoon. It has been a labour of love but 19 years later I am almost finished those 12 book illustrations and we hope to produce a picture book in the coming months. Never give up – even if takes 19 years!
The most important thing I want to impart to my fellow ABI survivors and their caretakers is to really reach for those stars, even with the extra challenges. It is always worth it. Don’t expect life as usual as it will be much different. Find and be involved in a good support group for fellow survivors and caregivers. Personality changes can cause the loss of old friends or even family but know that there are so many more of us out there in their place. We certainly DO understand the complexities of a broken brain that many from our previous lives cannot. And that is okay. Sometimes it just takes the experience of surviving an ABI or being a loved one of a survivor to invest in the learning in order to come to that understanding.
Unfortunately, the high rate of ABI will continue day after day through disease, auto or bicycle accidents and a gazillion other causes but listening and learning will increase prevention and allow all of us to live our best lives in spite of it all. Never be afraid to ask for help. It’s out there and in Canada it’s financially doable. Blessings to all of you beautiful people!
My dad; my dad has always been strong both physically and mentally. Dad served many years in the US military and completed a tour in Vietnam. Dad loved riding motorcycles and did many trips across the country with his friends. Dad was married to my mom for 20+ years and was the guy you called upon to help install your new toilet and fix your plumbing, or install your pool, or build a garage, he could fix or build anything….a real “Mr. fix it” they would say. Dad was an avid fisherman and enjoyed camping which we did a lot as a family when we were small. One of dad’s greatest joys was being a grandpa….this all changed on the night of January 24th, 1996.
I had just put the kids to bed and was settling down to watch TV and enjoy the quiet…when the phone rang and it was mom. “Dad’s had a fall and bumped his head while roller skating. The roller rink sent him by ambulance to the hospital for examination as a precaution and I will call you back when I know more.” This was odd and my spider senses were tingling because my dad would never just go to the hospital as a precaution….either you were ok or you weren’t; he said this so many times. I picked up the phone and called my friend to come sit with the kids and headed up to the hospital.
Upon arrival to St. Joseph’s Hospital Emergency Area, I must have looked panicked stricken as my husband and I were escorted to a private room and two police officers a nurse and doctor all came in to the room. I knew immediately something bad had happened as this was not normal. But absolutely nothing could have prepared for what they told us. Dad had had a massive heart attack and was without oxygen to his brain for over eleven minutes and they were still working on him. They also advised us that we needed to prepare for the worst. What did that even mean?? At this point I felt light headed and weak, and could only see their mouths moving but couldn’t hear or even process anything they were trying to explain. This was not real or happening, dad was so healthy this can’t be true. I am going to wake up from this nightmare…..but it was not a dream.
For the next 72 hours my family and I spent every hour by his bedside watching him fight for his life. I remember there being so many wires and tubes, the beep, beep sounds of the life support system working to breathe for him. The doctors came to tell us after 48 hours that dad had suffered a massive heart attack and had severe heart damage that would require surgery to repair, but worse than that dad had an ABI (Acquired Brain Injury) caused by a lack of oxygen to his brain. (I didn’t even know what ABI meant at that time) They continued to say that dad would likely be a vegetable and not likely to be able to do anything for himself and require 24 hour support that’s if he survived and we should prepare and discuss as a family next steps. When I asked what that meant, they simply stated “remove him from life support, and plan a funeral.” I felt like I had been punched in the gut and immediately began crying….but I knew my dad was a fighter and was going to survive. He had to…
The next 3 months dad spent in St. Joseph Hospital in the cardiac care unit. He had heart surgery to repair his aorta and then when stable enough he was transferred to Parkwood Hospital where he entered the Brain Rehabilitation Unit where he/we would spend the next 15 months. At the time of dad’s admission to Parkwood dad thought I was 12; my sister 10 and my brother 7. He had lost 15 years of his short term memory. Dad couldn’t remember he had 4 grandchildren or even recognize their faces when shown a photo. Dad slowly learned how to speak, read, days of the week, months of the year; then the tough part….walking, dressing and shaving and all the activities of daily living that that we all take for granted. At this point we didn’t know if dad would ever be able to care for himself again let alone live alone. We took shifts working with dad every day at his rehab, going for walks, doing exercise, working on reading, hand eye coordination, eating with fork and knife and then we would spend some time talking and looking through photo albums trying to spark some memories.
At about 9 months into dads rehabilitation I would get excited when dad would remember names and dates and he was up and walking now. But the doctors and nurses always reminded us not to get our hopes up and this might be as good as it gets…..they suggested we start touring LTC Homes. When I got up the courage to do it we arrived at the first LTC I didn’t get three steps in the front door and I started crying and said to my uncle, “My dad is not living here”. I turned and left. I was not able to accept this was his fate; not now, not yet, maybe not ever. I remember the smell….It made me sick. I remember thinking; if this is as good as it gets then he will stay with me. Within a few weeks of this Dad starting remembering things like names and faces being able to read and walk alone unassisted, showering alone and becoming really stable on his feet. This was so encouraging. It seemed every day was a small milestone… life was going to be different but dad was a fighter and was learning new skills, and coping strategies every day…as were we! We needed to remember NOT to say “remember dad” or “come on dad” Remembering that everything took extra time but it was important to give dad the time to do things for himself in his own time…..I kept thinking could he really be ok?
Fast forward 5 years; Dad was living independently in his own apartment. He may not have known how to use certain tools anymore, and couldn’t install a pool or fix plumbing, or riding his motorcycle across the country but my dad was/is enjoying life. Together we had to learn how to enjoy new hobbies and spend time together without getting frustrated if things took extra time. Those adjustments have included doing small tasks in their entirety or doing things in a quiet space with little distractions. Some of dad’s new hobbies are walking, gardening, baking, (he makes a mean zucchini cake) reading, and golfing with his grandson…oh! And he still loves fishing…that hasn’t changed at all.
Today it has been 25 years since his ABI and things are great, dad has even traveled extensively in Europe on his own. Dad worked hard on improving his social skills, being able to be in crowds and learn how to exercise patience practicing the skills taught to him on how to remember important details.
Lastly; my dad taught me the value of enjoying today because you might not have tomorrow; to exercise and practice patience.
Dad’s famous saying….”don’t sweat the small stuff”. This has a much deeper meaning now. I try to exercise this each and every day.
My dad is my hero and my children are lucky to have him as their grandpa!
Sincerely: A very proud daughter…Michelle Bloodworth!