ABI RECOVERY MAGAZINE Volume 1 Issue 2
Spring Quarterly Issue Serving and Supporting the Brain Injury Community of Canada
Top story... As the Eagle Flies Far and Wide So Shall We See Page 20
June is Brain Injury Awareness Month in Canada
Join the new’ Global Brain Injury Community
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Publisher and Editor
Supporting The Brain Injury Community of Canada Coast to Coast
Deborah St. Jean ABI Recovery Magazine (ARM) is published quarterly eZine. Deborah is a survivor of a mild closed brain injury sustained in a car accident on June 4, 2012. As Executive Director of British Columbia Brain Injury Association (BCBIA) at that time, she already had a healthy respect for survivors of brain injury and now understood firsthand in a small way. Due to a merger, she left BCBIA in 2014. While there, having served the membership well, she got to know their stories. There, she developed a passion to support and advocate for the Brain Injury Community.
Deborah thanks you for your support! ARM welcomes letters and relevant, original articles for publication, and we reserve the right to edit any accepted submissions for clarity and length. Contact Deborah St. Jean for copy deadlines or
Visit us online WRITE: 7436 Stave Lake Street, Ste. #103m Mission, BC V2V 5B9. Call 604-788-7221 for more information. Magazine & Subscription Information ABI Recovery Magazine (ARM) is an online ezine published quarterly. Full colour magazine 8 1/2 x 11 that addresses a wide range of topics for professionals and survivors with acquired traumatic brain injury, their families and caregivers. Published four times a year starting Annually with the ‘Winter Issue’ free to all. eSubscribe
Disclaimer ARM’s Publisher, Editor and other principal parties take no responsibility for, nor do we necessarily agree with opinions contained in provided articles, letters or advertising composed by second and third parties, nor do we guarantee the accuracy of such information nor medical claims contained in articles and other content submitted by outside parties. Your discretion is advised. Health & Medical Disclaimers Material published in this magazine is provided for informational purposes only with the aim to stimulate thought arouse meaningful discussion. This publication is not a substitute for medical care, rehabilitation, educational consultation, or legal advice in any way. Information in this magazine is general as it cannot and will not address each individual’s situation and needs. This magazine contains general information which may or may not apply to individuals. This magazine cannot and does not address each individual’s situation and needs. We encourage all persons with brain injuries, their family members and concerned parties to seek professional advice for any specific questions and concerns. The Publisher has made every effort to insure that content is accurate, correct and current and are not liable for any unintentional errors. Links to websites and contacts have been carefully chosen, but do not imply endorsement and we are not responsible or liable for their information and contents. Under no circumstances, shall the authors, the Editorial Manager and Publisher be liable under any theory of recovery for any damages arising out of nor in any manner connected with the use of this information, services, or documents from this magazine. *
Click here to sign up for your electronic subscription to ABI Recovery Magazine. Thank you for your interest in ABI Recovery Magazine and for your support. eSUBSCRIBER CHANGE OF ADDRESS? If you have moved, please contact Deborah at: 604788-7221 or email: Deborah@abirecoverymagazine.ca Please put ‘ARM Subscriber’ in subject line of email and send us your new email address to continue receiving your issues of ABI Recovery Magazine.
ABI RECOVERY MAGAZINE 3
Contents Navigating Life after An Acquired Brain Injury Pg. 8 Watson Centre for Brain Health Pg.13 Caregiver Quick Tips
Pg. 14
Balancing the Brain On-Time Pg. 16 The Soldier and a Cowboy Pg. 18 As the Eagle Flies Far and Wide So Shall We Pg. 20 Why Calendar and Reminder Apps Don’t Work Pg. 24 Inspiration: Rodeo Cowboy’s Remarkable Comeback
Pg. 27
An Acquired Brain Injury Survivor— Jennifer’s Story Pg. 30
June
I Give You a Stroke Survivor
is Brain
The Mosh Pit Links Provincial Listings
Pg. 32
Pg. 3
Injury
Pg. 36
Conference & Community News
Pg. 38
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Awareness Month in Canada
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ARM is Volunteer Run and Operated The cost of software, office supplies, publishing, promoting and sending out each issue is expensive. ARM requires Sponsors and partners to keep producing and going out to survivors, their families and the BI Community of Canada coast to coast.
‘Thank
ARM is a Not-For-Profit based labor of love enterprise you!’...for your support and partnering to keep this publication going out to the Brain Injury Community. 5
ARM Is about:
ABI Awareness
Eye on ABI News and Research
Information Flow
Continued Advocacy
Improving Supports
Improving Service Access
Continued Healing
Acceptance
Relearning
Quality of Life
The Possibilities
Loving the New You
And we are glad you’re here!
Prevention is key!
Did you know… Children and Brain Injury
~
Comments, suggestions and
A common misconception is that children recovery more quickly than an adult with an ABI.
Contributors welcome.
Injury is the leading killer of Canadian children and youth. 50 per cent of all deaths from injury are
Contact us
from brain injuries. Thirty per cent of all traumatic brain injuries are
Deborah@abirecoverymagazine.ca
sustained by children and youth, many of them while participating in sports and recreational activities. Only 39% of car seats for school aged children (ages 4-8) are used correctly. For more facts about ABI visit:
Bist.ca
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ABI Recovery Magazine Subscribe@abirecoverymagazine.ca (It is Free!)
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Navigating Life After An Acquired Brain Injury By March of Dimes,Toronto
The term acquired brain injury (ABI) covers a variety of conditions, from concussion to stroke, and each one is accompanied by a unique and often arduous rehabilitation. Survivors and their families may face cognitive, emotional, social, and physical challenges, and require supports to meet them. The transition from specialized medicallybased services to the community where the survivor lives, works and socializes marks the true beginning of life after ABI. Community reintegration represents the longest period of survivorship when viewed from the perspective of the whole continuum of care. The transition process for survivors and caregivers back into their communities is informal with few established and proven pathways. Unfortunately, many ABI survivors fall into a gap in the transition from hospital to home. The immediate crisis and subsequent rehabilitation may be treated at healthcare facilities outside of their home community, which makes it even more difficult for them to find the support they need when they return home. It’s simply impossible for anyone to be aware of every available resource. Community Navigator Program That’s why March of Dimes Canada (MODC), the Nanaimo Brain Injury Society (NBIS), and the Stroke Recovery Association of British Columbia (SRABC) with the support from BC’s Provincial Health Services’ Authority, got together to form the Community Navigator Program Partnership. Conceived as a pilot project in the Nanaimo BC area, this program connects survivors and their families to the support and resources they need to thrive in their communities. It offers three services: peer hospital visits, assessment and navigation, and community education. Peer hospital visits involve an ABI survivor spending time with a survivor who is still in hospital, in this case the Nanaimo General
Regional Hospital. The goal is to provide an empathetic, understanding ear, compassion for the road ahead and being a source of first -hand information about life after an acquired brain injury. In a word, hope. This is one way a person may be referred to the Community Navigator Program. Survivors can also self-refer (meaning they can just make an appointment for themselves), or be referred by a health care professional including hospital staff, community agencies and family physicians. Once the referral is made, a navigator coordinator will conduct a thorough assessment. Social, emotional, cognitive, and physical needs are considered, and appropriate resources and supports are recommended. An action is co-developed and three months later, the coordinator will follow up to find out whether recommendations and action plan were followed, and whether any further help is required. The community education piece revolves around free, public workshops about things like financial planning, understanding brain injury, system navigation, self-advocacy and sexual health. The workshops are intended to give ABI survivors and their caregivers – and members of the public – information they can use to help themselves. In February 2017, a report was created to evaluate the success of the Community Navigator Program, Phase 2. The project’s major finding was that use of a Community Navigator service shows great promise for assisting survivors and caregivers with community reintegration after discharge from hospital following ABI. It helps in the understanding of their symptoms, assists them in finding the help and resources they need and has enormous potential for saving the health care system large sums of money because it can reduce the length of hospitalisation and help prevent future re-admissions. *
“A river cuts through rock not because of its power, but because of its persistence” - Become the river!
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Of the 95 referrals that were made to Phase 2, 86 resulted in enrollments. 83 of those completed the program. On average, first contact was made within 15 days with participants. In February 2017, a report was created to evaluate the success of the Community Navigator Program, Phase 2. The project’s major finding was that use of a Community Navigator service shows great promise for assisting survivors and caregivers with community reintegration after discharge from hospital following ABI. It helps in the understanding of their symptoms, assists them in finding the help and resources they and has enormous potential for saving the health care system large sums of money because it can reduce the length of hospitalisation and help prevent future re-admissions. Of the 95 referrals that were made to Phase 2, 86 resulted in enrollments. 83 of those completed the program. On average, first contact was made within 15 days with participants. A post-program survey revealed impressive results. Of the 63 respondents: 100% agreed that their referral was responded to promptly, and that their Navigator Coordinator was knowledgeable and helpfulneed 100% agreed that they would recommend the Navigator Program to others 92% agreed that the program increased their awareness of available resources 92% agreed that the program increased their understanding of longterm recovery
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Recommendations Based on the results of the survey and the fact referral numbers continue to grow MODC, NBIS, and SRABC have made some recommendations about the future of the Community Navigator Program. To begin with, core funding is essential. The program needs stable, long-term support to continue providing quality service. Second, brain injury funding models must be reviewed. Existing brain injury societies receive core funding for ongoing support and management, which is a potential model for the Community Navigator Program. Volunteer development is also necessary. Skilled volunteers are generally under-used in service and program delivery, but tapping into this rich resource could help make the program cost-effective and sustainable. Expanding peer visits in hospital is another goal. Many survivors requested a peer visit once they got home, and well-trained volunteers could be useful in goal-setting and reintegration. Finally, the use of lay navigators – navigators who are not certified health care professionals – should be investigated to support ancillary navigation roles and open up a much larger pool of potential volunteers. Anyone who’s been through a medical crisis knows how overwhelming the healthcare system can be. ABI survivors have access to more resources than ever before, which is wonderful, but ensuring they know about these resources is another question. The Community Navigator Program is a single point from which survivors access support, get information, and reintegrate into their communities. *
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Qcard APP is available for download on the Apple App store. f you would like more information you may contact sergio@qcard.ca or visit www.Qcard.ca.
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Good things come o those who believe. Better things come to those who are patient. The best things come to those who don’t give up. - Unknown
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Watson Centre for Brain Health By Mark Watson, MA Co-DirectorI 7
It's 7:30 am on a Monday morning. The staff at the newly formed Watson Centre for Brain Health, are sipping their coffee and/or tea as we meet to plan out the day of treatment for our clients. Each of our clients has his or her own unique story and goals for their brain injury recovery. In most cases our clients have heard from professionals that they have 2 years from the time their injury or illness to make cognitive recoveries and that after the 2 year mark further recovery is not likely. We think that this may not be not be the case for all people with brain injury. Founded by Howard Eaton and Mark Watson, the Watson Centre for Brain Health is committed to improving our clients’ quality of life by implementing brain improvement programs that will have a lifelong positive impact. Our programs use specifically targeted cognitive rehabilitation to help the brain change and ultimately increase a client’s ability to live independently. It is now about 8:00am. As we walk out of our meeting our clients begin to arrive at the centre, located inside of Fortius Sport & Health in Burnaby, BC. Our initial assessment enables us to learn more about these goals so that we may then we develop a personalized program to help each client improve their cognitive, physical and social emotional abilities. We are committed to improving the standard of care for people with brain injury by challenging the
status quo for those who are now past the acute stage of recovery. Additionally, we remain committed to research, understanding that parallel with offering our program of cognitive intervention, continued research on neuroplasticity and brain injury is needed. A principal investigator from our first pilot research study stated: “The most important thing we have learned from the pilot project using the Arrowsmith intervention/Watson Centre Program is that the brain has an incredible capacity to change. What we have seen – even with a small group of participants – many of whom who had a chronic brain injury – is that intervention/stimulation can make a change in the brain and in cognitive/behavioural function”. ~ Dr. Naznin Virji-Babul, UBC Faculty of Medicine At the end of each day you can find our staff chatting about the successes of our clients and discussing how to make tomorrow even better than today. Fortunately that’s the culture of self-improvement that we have at Watson Centre for Brain Health. Tomorrow is another day – full of possibilities. Do you have questions about Watson Centre for Brain Health? Please send us an email: Just fill out the contact form, or give us a call. We are happy to help. Email is: info@watsonbrainhealth.com Phone number is: 604-674-8049 Visti: www.watsonbrainhealth.com ————————————————————-
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Caregiver Quick Tips By: Crystal Willms – TheCrystalFactor.com From 2002-2005, I was a caregiver for a commonlaw spouse with severe acquired brain injury. I can relate to the frustrations and exhaustion many hardworking, self-sacrificing people experience when being a part of a brain injured person’s life. Prior to finding a support group, I felt alone and struggled with knowing what to do in order to keep myself sane. How can you focus on yourself when your thoughts are often consumed with someone else’s needs? A caregiver can stay on track and avoid derailment. This is some of what I learned about how to successfully survive the caregiver experience. As a caregiver, you need to: 1. Remind yourself daily of the Universal Law of Priority. You must save yourself before you can save another. You cannot expect the individual you are caring for to either maintain their health status or thrive if you spend a lot of time together and are burned out. Your energy and attitude affects them.
4. Find a mentor Search high and low for someone who is a veteran caregiver. They will have great insight and information to share as well as much needed empathy. If you can find a support group, join it for awhile. 5. Choose your personal support system wisely Don’t be afraid to spend little to no time with people who are not positive and do not fully support you. Caregivers do not need more exposure to unconstructive situations. 6. at least 10 minutes alone in a quiet place everyday. You can benefit from even a small amount of rest to either help you get through the day or wind down. Take the time to ask the universe for what you want and be thankful for what you have. Clear your mind or visualize your favorite place. The quick tips I offer are just a few caregiver survival strategies I used to create the best possible experience in the face of this challenge. Being a caregiver is a difficult undertaking but making the most of the wisdom you gain has many rewards. Improved personal awareness regarding self-care is a lifelong gift. *
2. Educate your friends and family. Let them know what the individual you are supporting needs and wants if the injured person doesn’t communicate it themselves. If you can, ask permission to share this first. You don’t have to be the know-it-all, number one go-to person. Let your support system in on the secrets. You will be able to relax a little. Let go of some control. 3. Learn the barter system Create a list of people you can approach for help when you need a break or assistance with life’s responsibilities. Next, make a list of your skills and knowledge which can be traded for respite time or other help you may want and/or need. Now contact everyone on the list and share with them what you can offer in return for their assistance. I hope you will be positively surprised at the result and wonder why you waited to try this. It’s possible you will receive some help without reciprocating. If this is offered to you, don’t hesitate to accept it. 14
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Balancing The Brain and Being On Time By Kimberly Burnham—The Nerve Whisperer, Wash. USA
People complain about being slaves to time—being on time. There is a clock inside each of us— our brains, our bodies, right down to our cells—that is syncing up every moment to the world around us. Our cells and brain notices the words we use and the way the light changes as the sun circles the sky. "If we’re having lunch, you and I will unconsciously pick up our forks more or less at the same time. There’s a great study about two people playing the game WhackAMole. Even though they were competing against each other, their movements fell into synch, even at the expense of losing points. They would unconsciously work toward this synchrony. If I watch a video of two people talking, I will be able to tell, unconsciously, how friendly they are, based on the extent to which their movements fall into synch with each other," said Alan Burdick, speaking about his book, Why Time Flies: A Mostly Scientific Investigation. In movies where it seems that a child is mimicking the actions of an adult the actors are actually doing the opposite because it is easier for the adult to mimic what the child is doing than to ask a five year old to adjust the flow and rhythm of how they move, even if the scene is portrayed that way. Try this: pair up with someone, stand facing each other, and take turns following the other person's hand movements. How hard is it? Do you get better over time? Many rhythms in the body, known as circadian rhythms or circa (about) dian (a day) regulate our physiology on a 24 hours cycle. The most prominent cycle is the sleep-wake cycle. When these rhythms are disrupted the ability to sleeping deeply and waking up rest and ready to go, suffers. In a 2016 article researchers noted, "Circadian rhythms modulate many physiologic processes and behaviors. Circadian disruption [in rats] induced by constant light exposure has been discovered to producepathophysiologic [disease] consequences after brain Injury. Our results showed that 14 days of constant light exposure after TBI significantly worsened the sensorimotor [sensation and muscle movement] and cognitive deficits, which were associated with decreased body weight, impaired water and food intake, increased cortical lesion volume, and decreased neuronal survival [further brain-
Damage. Our novel findings suggest that light exposure should be decreased and circadian rhythm reestablished in hospitalized TBI patients." (Li, D., S. Ma, et al. (2016). "Environmental Circadian Disruption Worsens Neurologic Impairment and Inhibits Hippocampal Neurogenesis in Adult Rats After Traumatic Brain Injury." Cell Mol Neurobiol 36(7): 1045-1055. www.ncbi.nlm.nih.gov/ pubmed/26886755) Our relationship to time can be balanced by paying attention to the kind and amount of light we are exposed to. Sunlight in the morning and no screens for at least the 30-60 minutes before we plan to go to sleep are a key to sleeping better. Another relationship between time and movement shows up when we use action verbs to describe things as moving slowly or speeding up. It gets interesting when the things being described are not actually moving yet are paired with action verbs like crawl, march, or fly. Feel in your mind and your body the relationship between time, space, and movement in this poem published in The April, 2017 Volume of The Year Of The Poet. Time Travels Time crawls slowly moving through space experiences growing A caterpillar crawling upwards on a leaf encountering the new world The trail crawls up the mountain side carving out a space for itself trees and flowers watching as it climbs And with the movement time flies like a rocket from days gone towards a yet unborn future Jets stirring the clouds as they fly from here to there carrying us through a plethora of feelings Fruit flies gather to eat on the rough underbelly of life quickly multiplying in time And time marches on covering great distances or curling up at home 16
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A soldier of fortune marching us towards the place
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...Wear your helmet!
where the winds of time blow strongest And March turns to April as we celebrate cyclic changes in time Can you see the trail crawling in your mind's eye or time marching on? Imagine your body being "on" time. * About The Nerve Whisperer— Known as the Nerve Whisperer, Kimberly Burnham, PhD (Integrative Medicine) helps people with brain health issues, chronic pain, and vision improvement goals through health coaching (phone); and hands-on healing (craniosacral therapy, Reiki, acupressure) in her private practice in Spokane, Washington. Visit Kimberly's website for more information. Or write: NerveWhisperer@gmail.com
Prevention is the key!
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The Soldier and a Cowboy By Curtis Anderson, Alberta
The Soldier and a Cowboy have fun They spend their share of time in the Red Hot blazing sun The Soldier and a Cowboy have their own uniform Sometimes they both can be in a storm The Soldier and a Cowboy have their own knowledge There is a few that stand alone with their Courage The Soldier and a Cowboy make their living off the land You can tell the quality of a man by the shake of his hand The Soldier and a Cowboy are independent They watch each footstep they make as though it was made in cement Everyone's future looks bright our Soldier's fight for the freedom of the Red and White
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As the Eagle Flies Far and Wide So Shall We - A message to the Global Brain Injury Community By: Layne Wright: Survivor. Director, Brain Injury Resource Group Inc. (BIRG)
Most of us know what it means to feel as if we are “flying free”, with the wind in our hair, high above the ground, experimenting, learning, growing with no impediments in the way. After all, we have been doing this from the time we began to crawl as babies and will continue into our twilight years, right? That is…unless something stops us in midflight causing us to come crashing to the ground - let’s just say it – Traumatic Acquired Brain Injury (ABI or TBI). We, who survive are undeniably changed forever, lost, and we sense that we are irrevocably no longer the person we used to be. It is clear that those survivors that are able to find the courage to accept help somehow develop the determination and inner strength to rise up and not quit, do make their way back. The journey back is long paved with pitfalls and frustrations. Survivors can, and many do, find a new way to fly all the while finding and embracing their new identity. I fully admit that growing up, just as some of you reading this; I had no idea what the letters A-B-I or T-B-I stood for until I obtained a brain injury. In hindsight, I wish I would have had access, to and been presented with information on the topic of ABI prevention. With an eye to ABI prevention, as members of the global ABI Community, we have a clear responsibility advocate and to educate the general public. One does not have to be highly educated to understand that by the time you have read this article, another 4 to 6 people will have sustained a preventable ABI. Unfortunately, it is highly probable that if you are reading this, a preventable ABI has already touched your life in some way. If ABI were a disease, it would be considered a world-wide epidemic You may have heard. Global statistics for ABI’s have increased at an alarming rate. It is time for action. I suggest that the ABI Community around the world must find their way to put differences and competitiveness aside for the common good; unite, combine and advancing joint efforts towards accelerating traumatic ABI awareness, EDucation, prevention and treatment through
sharing resources. A global plan is needed. A global movement must go forward. With the utilization of the internet, through email and social networks how difficult would it really be to share brain injury awareness and prevention at the grass -roots level to develop a vehicle to reach youth and their parents at the country, town and city level in every technological country in the world? Better and stronger together in unity It is our desire at Brain Injury Resource Group (BIRG), to encourage a global ABI Community to come together of one mind for a four-fold purpose: raise awareness, prevent traumatic ABI, and facilitate new discoveries through research make treatments more accessible within reach of survivors. This conversation is not new to us in the ABI Community. It is said that talk is cheap. We have all seen it. Time is come for all of us to put our differences aside. Let us together, share our Non-Profit Organizations’ (NPOs) individual strengths and resources to aid in this global cause. Let us together, put our differences aside and seek out ways of sharing our ABI Community’s resources as NPO’s to globally eradicate preventable brain injury within the next three generations. Pie in the sky? Not if we put our efforts and minds to positive change Together, let us coordinate to establish prevention awareness plan in every town, city, province, state and country across the globe. Take a first step. Open a new dialogue with your BI associates at the grass-roots level. Time has come to unite for world-wide change. Imagine a strengthened, focused global BI Community working in unison bringing awareness and prevention to all levels of society, ages and genders and status. With education and awareness, growth through increased donor support can be expected for all participating NPOs. With a global increase in education and awareness, a campaign on this scale will see increases in donor financial support world-wide. We believe we shall see funds coming in to NPO members of the global BI Community to further strengthen. the global campaign. It stands to reason, there would be more funding for BI research going forward as well. We invite you to see the global vision with us, and 20
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consider the increased possibilities for breakthroughs in all areas of treatment and therapies for survivors follow. Seven little letters with a life altering impact… P-A-R-T-N-E-R The benefits to the BI Community as-a-whole taking action by partnering up would be broad, powerful and most cost efficient. Remaining independent, but partnering up and working collaboratively with another NPO at the province or state level. Then together, partner up once more globally through BIRG. Eventually, NPOs collaborate country to country. How much more could be achieved towards ending preventable ABI’s? I suggest that we shall alleviate obstacles plaguing today’s independent-acting NPOs in the process. We all know the quote, ‘Work smarter. Not harder’? It seems senseless not to, right? As a survivor myself… I have become an expert in what it is like to live and thrive in spite of having an ABI. I learned that by doing, and I also recognize the fact that I have learned more from other survivors than any other source. Who better to learn from? Of course, we all have walked the walk. It’s the reason there are so many organizations catering to brain injury survivors. Same logic applies for our often underappreciated caregivers. Who better to learn from then another caregiver? It stands to reason that we learn from each other in a NPO setting as well. So, let’s recap. We’ve undoubtedly ruffled a few feathers at the NPO level having spoken of the “unspoken”. Simply said, we are not doing enough and we all need to do more with less. There is so much more that can be done, should be done, that finally now being done. Here is your ‘Call to Arms’ people The fact is, you have read this far because you are involved whether you wanted to be or not with ABI. Survivor, caregiver, non-profit, for profit, etc…BIRG, a Minnesota, USA based 501c3, is really about one thing in the end - YOU. That’s right, you. This is a not a backyard, borough, city, province, state or even a country problem, so why is everyone still addressing it like one? This is about the person or people who cared enough to stick around and become a caregiver. This is about the simple fact that society looks at a person differently when they hear the words traumatic brain injury, stroke, and epilepsy, right? This is about the stigma that comes with the word disabled which far too often is misunderstood as un-abled. This global movement is about these things, and so much more!
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BIRG is beginning to see change occur that the BI Community seeks, and are here to unite a Global BI Community and expedite these changes for all. So what’s so different about BIRG aside from being an international non-profit? We leave out the middleman. It’s survivor to survivor, caregiver to caregiver, medical community to medical community, legal field to legal field, social services to social services and so on, comprised of survivors and caregivers. It’s not the old school brick and mortar, province by province or state by state “do-good” organization that has been around since our grandparents. This is about addressing the problem as a whole collaboratively. This is about the big, global picture. Forget about looking at the problem from city or borough, those days have passed. Look at this for what it is, a global epidemic. We all have a personal connection to ABI. This is not about anything other than identifying the shortcomings and developing solutions which are now being implemented. This is not about “welcoming you to your second life.’” It’s more about going on with your first. You’re reading this aren’t you? So you’re still here and that being the case, never give up. Fight like you have never fought before because you are done recovering only when you decide to give up! Not when you have been told to give up. That being said, simple question… Don’t you think it’s about time we helped each other? Think survivor to survivor, caregiver to caregiver, medical to medical, and so on. We NPOs have an international crisis on our hands and we have been addressing it on a local, regional level. The fact is, that’s an outdated model. This is a global crisis, folks! Join with BIRG as we band together across the world; across all walks of life, age groups, ethnicities and countries We encourage you to be an active part of your own healing process. Lend a hand back to that unsuspecting soul who is about to have their life turned upside down. As a newbie you remember what it felt like. A helping hand would have made a huge impact, right? Consider becoming-the-change in someone else’s world. Join with BIRG, as we together impact our world. For us, this is truly a passion project that is much needed across the world BIRG has a very robust and intuitive website ‘built from and for’ the global BI community. It works in conjunction with BI-related international partnerships internationally from Australia to Venezuela. We have incorporated new innovations that drive a timely 21
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presentation of new resources, new thinking, and lastly and more importantly, new ways of helping one another. Please check back with our web site often. BIRG welcomes your comments, suggestions and insight The gauntlet has been dropped I encourage you to please reach out. Get engaged. Partner up and help one another. BIRG invites you to accompany us on this global mission. As mentioned, our new website is for our partners in this movement. We invite you to join in the Global BI Movement (GBIM) and get connected with other Societies and peoples. As the eagle flies far and wide, we at BIRG, strive to partner with all credible, forward thinking BI NPOs world-wide. We welcome all those Societies who also hold this global vision for BI reduction and sharing under one global movement. We wish to recognize you as a partner of a new, embolden Global Brain Injury Community. Will you step forward? Once again, we extend an invitation to you and to Directors of NPOs reading this, to partner with us. Not all brain injury can be prevented. This we admit. However, ‘together’ we shall continue towards our goal. From a position of strength, we shall reduce preventable brain injury world-wide. With Global BI Community members such as you, we shall strive continuously to reach the world for BI awareness, prevention, and to facilitate the global sharing of research, knowledge and resources for the benefit of survivors and their families wherever they may be. A US Registered Non-Profit Charity
Volunteers’ Desired. Donations Accepted. Being active in the development of OUR world is required
JOIN BIRG Come visit us at www.thebirg.org or for more information please write us at info@thebirg.org
Your Global Brain Injury Community www.thebirg.org
ABI Recovery Magazine Advertise with us! Deborah@abirecoverymagazine.ca
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Why Calendar & Reminder Apps Don’t Work ...For People with Memory or Cognitive Impairments
By Sergio Di Giovanni, Survivor and Creator of QCard App.
More and more people who live with memory and cognitive impairments are turning to smart phone apps as a tool, an aid, a crutch, in hopes of helping them remember, stay on track and take control of their day-to -day life. I am one of those people (click here to read my full story) and in this blog I will explain the fundamentals of why popular calendar & reminder apps like Apple iCal, Apple Reminders, Google Calendar, don’t work for us. The main flaw with all these apps is they were made by people with healthy brains, for people with healthy brains, which means they were not built with us in mind – they don’t understand what it’s like to live with executive dysfunction, memory or cognitive impairments. To be fair, how can they? You can only truly understand it when you live with it. These apps, although sufficient enough for the average user, lacks the fundamental ability to get us to start something, follow-through with it, and not forget along the way. Usability is EVERYTHING First, lets understand what “Usability” means: Usability means that the people who use a product can do so quickly and easily to accomplish their own tasks. – Janice (Ginny) Redish and Joseph Dumas, A Practical Guide to Usability Testing, 1999, p. 4.
Usability is the difference between a user adopting a product vs. abandoning a
product. If a product does not help a user accomplish their own task, then it has failed. This concept is especially true when it comes to our population of users. People living with Brain Injuries, ADHD, Alzheimer’s, Dementia, etc., have a real need for products that assist in their day-to-day living, especially when it comes to managing it and getting things done. Let’s look at an example. Lets look at a daily task like taking medication. As you can imagine, this could become quite challenging for our users. Here’s a simple example of what happens to Johnny when he tries to manage his medication using an app that wasn’t built for him: 8:00 AM – Johnny receives an alert on his Smartphone reminding him to take his medication. Johnny has 2 options to choose from: Option 1: Stop what he’s doing and take immediate action. Healthcare professionals often offer this as a strategy to help us get things done. I understand the theory behind it and how it makes logical sense on paper. But when applied to real life, this theory is full of flaws. First, it’s impossible to predict and deliver alerts for events at the exact moment they are needed. Secondly, asking us to stop what we’re doing and move onto another task is adding to our chaos. Option 1 actually fights against us. Now you’re introducing a new tool that will distract us even more and continuously take us off task. It’s not practical and is not a solution we can rely on.
Only YOU have the power to say, ”This is not how my story will end!”
Option 2: Johnny relies on himself to remember later. Well… we can all guess what happens next… The scary thing is, sometimes it only takes a few minutes to forget all about it. This option is NOT recommended. Let’s see what happens to Johnny in the next few minutes. 8:06 AM – The thought of medication has left Johnny’s mind. So, where does this leave us? It leaves us in a place of uncertainty, chaos and a feeling of 24
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having no control. You see, whether you use the app(s) above or not, the results for Johnny are still the same. He still forgets and he doesn’t get things done, even though he was reminded. It’s not Johnny fault, he is trying his hardest, but this is Johnny’s new reality. It took me a long time to realize I was still very capable of doing the things I wanted to do, and it wasn’t my fault that I couldn’t remember or carry through. I was just using the wrong tools….that’s why I created Qcard. How Qcard Adapts To Johnny 8:00 AM – Johnny receives an alert from Qcard on his SmartPhone reminding him to take his medication ohnny can relax… he doesn’t need to take immediate action… he doesn’t have to stop what he’s doing… heck, he can even ignore it if he wishes… because Johnny knows and feels secure that Qcard will not let him forget. 8:01 AM – Qcard reminds Johnny again. 8:02 AM – Another reminder. Still not ready Johnny? No problem. 8:03 AM – Another reminder from Qcard. Are you still there Johnny? 8:04 AM – “Ya I’m still here Qcard. I’ll get to you in a minute” replies Johnny 8:05 AM – yet another reminder from Qcard. “Okay, okay… I’m still not ready Qcard. Remind me again in 15 minutes please” replies Johnny
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- Qcard worked with Johnny’s ‘lack of initiation’ and allowed him the freedom to take control of the task - Qcard gave Johnny the flexibility to manage the task in that moment - Qcard gives Johnny the independence and confidence he needs to succeed. Johnny feels good. Which brings us to the next point, what happens later in the day when something triggers the thought “did I take my meds this morning?“ Normally, Johnny would stress over thinking, analyzing, searching for some clue that might link to some distant memory of his morning. Well, with Qcard there’s no more guessing… no more analyzing… no more searching through foggy memories … Qcard is a life saver – that’s right, Qcard saves and archives only the things you complete in life. Johnny looks at Qcard and is confident he took his meds at 8:22AM this morning – Johnny is reassured. With Qcard, Johnny will never double dose, miss another dose or doubt himself ever again. Johnny ♥ Qcard. *
(15 minutes later) 8:20 AM – Hey Johnny, are you ready to take your meds now? 8:21 AM – I’m on my way Qcard 8:22 AM – SUCCESS! – Johnny takes his meds. This is a great example of how the orange Reminder Qcard was designed to be used in everyday life. It’s not about “reminding Johnny to take meds NOW”… instead, lets “remind Johnny to START THINKING about taking his meds”, and allow him to control the task at his own pace. - Qcard gave Johnny the flexibility to manage the task in that moment - Qcard allowed him to continue working on his current task and remained in the background to ensure he would not forget.
May is Brain Stroke Awareness Month
Most strokes are preventable. A large %age of the ones that happen are treatable with the right care, right away. It's a matter of knowing what to 25
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It took me a long time to realize I was still very capable of doing the things I wanted to do, and it wasn’t my fault that I couldn’t remember or carry through. I was just using the wrong tools….that’s why I created Qcard 26
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Inspiration: Rodeo Cowboy’s Remarkable Comeback By Mrs. Donna Anderson – Vernon, BC I wasn’t privileged enough to know Curtis Anderson, then 27, before his accident in June of 2002 at the Ponoka Stampede in Alberta. That summer ended his 10 year bull-riding career, but it was my understanding that Curtis was a brazen young cowboy out to prove himself in the rodeo world. Prove himself he did...until that fateful day, when he came head to head with an angry 680 kilo bull. He was struck in the head twice by the bull. His world, as he knew it, changed forever, and the life of his family and friends, too. My first introduction to my husband’s nephew, Curtis, was the worry that consumed my husband as he waited to hear any news of Curtis’ condition after his arrival at the hospital.. During the days and nights that followed, the family spent them watching, waiting and praying for this special young man to come back to them. The news came down to our family that a piece of Curtis’ brain had to be removed to release the pressure. Could the overwhelming love of his family and friends move mountains? I wondered to myself, would he even survive? The words I heard over and over again were, “He’s a fighter”! Survive he did…proving that he could beat the odds. But beating the odds and surviving was only the first steps. Curtis was in Edmonton’s University Hospital, then, after 3 weeks was transferred to Glenrose Rehabilitation Hospital across town. There he struggled to retrain his brain to relearn even the simplest of personal tasks. Tasks that we all take for granted every second of our day - from relearning how to speak, eat, stand and walk. Curtis went through extensive rehabilitation over and over. Doctors trying to find the right levels of medication to help his brain relearn to function. And relearn he did...he never gave up. To this day, I still believe they only took away the “I can’t” piece of his brain! Curtis went through extensive rehabilitation over and over. Doctors trying to find the right levels of medication
to help his brain relearn to function. And relearn he did, he never gave up. To this day, I still believe they only took away the “I can’t” piece of his brain! I was always amazed at the progress each time I saw him. Seriously, this young man stayed positive and fought to regain everything he possibly could. I remember him walking down a long stretch of gravel road every day, no matter the weather, to increase his strength and mobility. He always made sure he followed his exercises. There was no stopping him. I don’t ever remember hearing him complain or seeing him feel sorry for himself. I’m sure there were many days like that, but he certainly hid them well. Curtis worked hard going to school to learn how to live independently again. I remember him living in Camrose, AB at the time when he was telling me all the accomplishments he had achieved. I was so proud of him. I loved to hear about where he had gone and what he had done! During this time, Curtis was also focused on giving back to the Northern Alberta Brain Injury Society (NABIS) and the Halvar Johnson Centre for Brain Injury in Ponoka, starting with a dream of putting on a trail ride to raise funds for Brain Injury Awareness. His family and friends worked tirelessly beside him in order to help fulfill his dream. And yes, fulfill this he did…and in a huge way! He named it the ‘Courage Canada Trail Ride for Brain Injury Awareness’. It went on to be held annually, held on the last Saturday of May.
The trail ride grew larger every year, from a few riders and hay wagons at first, to bus loads coming in. A dinner and dance always followed. So much fun! I remember the one year when Curtis surprised us with his guitar playing and ‘cowboy poetry’. In order to utilize his good hand, he had learned how to play the 27
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guitar backwards from most. I could feel nothing short of awe, I couldn’t even play the guitar! His poetry is amazing! Curtis would attend the Kamloops Cowboy Festival in British Columbia every year and present his ‘cowboy poetry’. He would attend as many rodeos as he possibly could, while reconnecting with old friends and always making new ones. Curtis was unstoppable with his huge grin and bigger personality! He worked on the family farm, doing everything he could to pull his weight. My understanding is he now has his own place on the family land. The last time I saw Curtis, he was driving up the driveway in his white Cadillac. I could do nothing but smile as my heart swelled with the pride that I felt for all his accomplishments, all the while hoping that his uncle could see how far Curtis had come and knowing the pride he would feel. I am proud to know Curtis’ parents, brothers and family that unselfishly gave everything they could of themselves, and then gave more, to help Curtis on his long road to recovery. I am proud to know this young man that is nothing short of a miracle. Thank you, Curtis, for showing me that sometimes if you can’t get over the mountain one way, there is always another way and to never stop trying! I am sending out another very special ‘thank you’ to Curtis, and his huge family for welcoming me into their lives when they did. Keep up the great work ‘Curty’ and know you are always loved. You are such an inspiration to me! *
Curtis Anderson, Alberta
TBI Survivor
* Motivational speaker
Musician and singer
Cowboy poet
a erntnisfree b l A I
*Contact Curtis Anderson to book...
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2017 ANNUAL COURAGE CANADA TRAIL RIDE The trail ride was started in 2004 to bring awareness to Brain Injury. It also gives survivors a chance every Spring to be around the horses and to socialize with other survivors.
Over $147,000 raise to date The proceeds from past trail rides have gone to support L.A.B.I.S. (Lloydminster Brain Injury Society)
Halvar Jonson Centre for Brain Injury (Ponoka) FOCUS (Vermilion) VALID (Vegreville) The Canadian Pro Rodeo Sports Medicine Team
Financial travel aid reuniting families
Therapy equipment purchases The Annual Courage Canada Trail Ride is the last Saturday in May every year. Trail riders bring a bag lunch and water for lunch
FOLLOWING THE TRAIL RIDE (Included)
Supper, silent and live auction, cowboy poetry, fiddling and music at the Innisfree Recreation Centre.
Held in the Minburn-Innisfree area, Alberta
2017 Annual Courage Canada Trail Ride
urn b n Mi
For Information email: cccanada@hotmail.com
Sat. May 27 Tickets: 780-581-4802
‘Ride
in Support Brain Injury Awareness 28
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Be Your Brainy Best! Do you have acquired brain injury symptoms? Do you have life stressors that impact your daily functioning? Are you interested in improving your cognitive skills? Crystal Willms - Certified Power Coach® Reiki Master Practitioner, Alberts ——————————————————————————————————————————————————————————————————————
Coaching and consultation for brain injury management
Brain Gym® strategies for improved cognitive wellness, athletic and academic skills Reiki sessions to promote physical healing, relaxation and improved mental clarity Whole-life coaching to assist with improved skills in problem-solving, planning and follow-through (for individuals with or without injuries)
TheCrystalFactor.com crystal@headwaycoachingintl.com 29
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An Acquired Brain Injury Survivor—Jennifer’s Story By Alisha Lundgren-Drinkwater - Executive Communications Coordinator. Strive Living Society
Jennifer is a courageous individual who sustained a brain injury and continues to progress towards recovery. She is active in the ABI community and shared her story last year at the Acquired Brain Injury Program’s Community for Everyone Awards event. Not only is she a powerful and charismatic public speaker, but she is also a talented writer. Jennifer recently published the story of her journey on her blog. Jennifer is a member of Strive Living Society’s Assisted Independent Living program. She resides with one of Strive’s Home Share providers and is encouraged to continue to increase her independence in a safe, positive, and supportive environment. She has been on a considerable journey since the pivotal day her health took a turn for the worse. Her courage and dedication towards recovery is truly commendable. In 2009, due to mounting fears of the H1N1 influenza, Jennifer’s physician recommended that she take the combination H1N1 seasonal flu shot. Several weeks later she started to notice increasingly concerning symptoms such as double vision, falling down, and inability to swallow. She went to the hospital multiple times to address these concerns without any clear answers. Prior to receiving the flu shot, Jennifer had been recovering from a severe strain of the flu and her immune system was already reduced. As a result, the antibodies in the vaccine started to attack her brainstem. Jennifer was admitted to hospital, placed on a ventilator, and went into a coma soon after. She was diagnosed with Bickerstaff’s Brainstem Encephalitis, resulting in an acquired brain injury. After coming out of a coma she slipped in and out of consciousness, finding herself unable to communicate with those around her. Jennifer spent 18 months in the hospital and endured countless medical tests, long days and nights of persisting physical agony, and feelings of hopelessness.
“But one day I opened my eyes, and even with the double vision, I could just make out my mother, sitting and reading by the light. The light was making a halo around her head, and her hair was a rich mahogany. She looked just like a woman from a Renaissance painting. I tried to speak, to tell her that I was awake, that I was okay, but found that I couldn't. Jennifer spent 18 months in the hospital and endured countless medical tests, long days and nights of persisting physical agony, and feelings of hopelessness. “But one day I opened my eyes, and even with the double vision, I could just make out my mother, sitting and reading by the light. The light was making a halo around her head, and her hair was a rich mahogany. She looked just like a woman from a Renaissance painting. I tried to speak, to tell her that I was awake, that I was okay, but found that I couldn't. So I tried raising my hand to get her attention, but found I couldn't do that either. I felt panicked, terrified! I was paralyzed from the neck down, I could not see from the blurred double vision, and I could not speak from the Tracheostomy,” Jennifer said. Jennifer made great strides at a group home in Langley and focused on recovering, increasing strength, and mobility. She made huge strides during her time there and even learned how walk again. Jennifer moved into one of Strive’s Assisted Independent Living’s homes in 2013. She reports that this is where she finally developed independence and autonomy. With the support of her care provider, Jennifer increased her independence in many different areas of her life. She is now able to prepare meals, clean her home, access transit, go grocery shopping, and manage her finances. Jennifer is determined to continue to increase her autonomy and is always challenging herself in new ways. Jennifer resides in her own suite with a bedroom, bathroom, living area, kitchenette, and a patio and yard 30
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where she grows flowers and vegetables. All amenities are within wheelchair driving distance and the host family provides her with cable, Internet, Netflix, and Wi-Fi. Since arriving there she continues to push herself by walking on the treadmill, stretching, and most importantly, always doing things herself before calling for help. “Being willing to try new things has allowed me to learn to use transit, to travel the ferry to visit my parents, to get into a car, to go to dinner without my chair, and to have the confidence to go anywhere in this world and do anything in my imagination that I set my goals for,” said Jennifer. Strive is so proud of Jennifer’s progress and the courage she demonstrates by sharing her story with others. Jennifer is a very talented writer and Strive recommends reading the full story on her blog. “I suspect I will continue to have days when I will cry or rage or both, but today I choose to be happy, to forge ahead,” said Jennifer. * Strive Living Society is a nonprofit registered charity serving children, youth, adults, and seniors with various needs and abilities. To learn more about Strive, visit our web site. To learn more about Assisted Independent Living or becoming a Home Share provider, visit our web site
For every problem SAFTETY FIRST—Heed Warning labels!
there
when participating in family Spring and Summer motor sports
is a
ASK ME ABOUT
Seek it out
Deborah@abirecoverymagazine.ca 31
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I Give You a Stroke Survivor by Aaron Avila, Survivor, Founder of The Stroke Zone Blog Want to see a person who has looked death in the eyes? I give you a stroke survivor! Want to see a person who walks in total despair but rises each morning with hope? I give you a stroke survivor! Want to see a person faced with extreme financial hardship yet keeps going? I give you a stroke survivor! Want to see a person whose life is changed as fast as lightning strikes? I give you a stroke survivor! Want to see a person stripped down to the very core of life? I give you a stroke survivor! Want to see a person who has every reason to wave a white flag of defeat but fights like a mighty warrior? I give you a stroke survivor! Want to see a person who realizes life is extremely fragile? I give you a stroke survivor! Want to see a person who truly loves life? I give you a stroke survivor! Want to see a person who never gives up? I give you a stroke survivor! Want to see a person that deeply and truly loves their family? I give you a stroke survivor! Want to see a person who is stronger than any human on this planet? I give you a stroke survivor! Want to see a person who understands pure love? I give you a stroke survivor! Want to see a person who gives to others? I give you a stroke survivor! Want to see a person whose brain does not control their body? I give you a stroke survivor! WE ARE NOT STROKE VICTIMS! WE ARE STROKE SURVIVORS! 32
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The two most important days in your life are the day you were born and the day you find out why— Mark Twain
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‘The Mosh Pit’ ~ Blogs, Newsletters, Podcast & Video Resources Scott Collier, Survivor & BI Advocate
Working With Wellness Brain Break ‘Podcast’ (listen) Brain Break ‘Blog’ Gilly Thomas CRS, BEd, BA
My Struggles with a Traumatic Brain Injury-- Introduction ‘Video’
Credit: Flint Rehab
Links
Mindset Tips, Habit Tips & Happiness Tips 28 Stroke Recovery Tips for Healing, Habits, and Happiness ‘Blog’ Hosted by Stroke Survivor, Aaron Avila
Visit Aaron’s You Tube Podcast Channel By a Survivor for Survivors
Northern Brain Injury Association (NBIA) Educate. Prevent. Support.
(Blog)
Brain Injury Education 34
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Alberta
Province & Territories - Links
(Coming Soon)
Coming soon
British Columbia Vancouver
Labrador Coming soon
Manitoba Coming soon
New Brunswick Coming soon
New Foundland Coming soon
North West Territories Coming soon
(Sneak Peek)
Coming in Summer’s July Issue! 35
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Nova Scotia Coming soon
Nunavet Coming soon
Province & Territories Listings
Ontario Toronto
Prince Edward Island Coming soon
Quebec Coming soon
Saskatchewan Coming soon
Yukon Coming soon
(Sneak Peek)
Coming in Summer’s July Issue! 36
Conference and Community News
Coming Soon
20-23 September
Rome, Italy
2017 Second International Conference on
Paediatric Acquired Brain Injury New Strategies to Improve Outcom and Quality of Life For more information, visit: www.internationalbrain.org
May
European Stroke Conference 2017 24—26th The 26th Annual Berlin, Germany EU
Submit events, news listings to: Deborah@abirecoverymagazine.ca 37
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October Global Conferences & Community News
In Memoriam: Harry Joseph Zarins Executive Director — BI Advocate, Supporter & Friend January 2, 1951 – December 26, 2016 2017 Brain Injury Canada Annual Conference, October 4-5, Ottawa CA ~Postponed Until Further Notice~
American Congress on Rehabilitation Medicine 23 — 28 ACRM 2017 94th Annual Conference Atlanta, GA USA
Community News North American Brain Injury Society (NABIS) USA Chairman Dr. Mariusz Ziejewski is pleased to announce that the Board of Directors of the North American Brain Injury Society have vote unanimously to enter into a formal affiliation with the International Brain Injury Society. As part of the 12th World Congress on Brain Injury, NABIS is organizing a Pre-Congress Session entitled Evidence Based Assessment and Treatment of Concussion and a plenary presentation by Dr. Jonathan Silver entitled: Persistent Symptoms after Concussion: A Neuropsychiatric Perspective. In addition, NABIS will be holding the ‘30th Annual Legal Conference on Brain Injury’ concurrently with the World Congress, providing attendees unrivaled access to both legal and medical education. As a special feature of the Legal Conference, Dr. Erin Bigler will deliver an in-depth four-hour lecture that will review the current applications of neuroimaging methods in the study of (acquired) TBI, and provide a glimpse into future applications in the diagnostic, treatment and outcome predictions in TBI. Don’t miss this unique conference! For more full details and to register, visit: www. nabis.org * Credit Source: Brain Injury Magazine (NABIS) USA - Reported: March 2017 38
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I choose Recovery I choose to be Courageous I choose Happiness I choose Positivity I choose to Love the new me I have become
I am a brain injury survivor
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