Former WWE Wrestler Christopher Nowinski Leads Charge in Treating and Preventing Brain Injury in Athletes

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MARCH 2017

ALZHEIMER’S DISEASE ANCESTRAL STRESS TECHNOLOGY This online test can determine Psychological trauma experienced Humanoid robots that if your memory is normal or if by ancestors can be passed onto assist older Canadians with you should see a doctor. p03 future generations. p07 dementia. p08 NEUROLOGICAL CONDITIONS PERSONALHEALTHNEWS.CA

Former WWE Wrestler Christopher Nowinski Leads Charge in Treating and Preventing Brain Injury in Athletes

ive weeks after taking a hit to worsening mental, emotional and the head in the ring, profes- physical symptoms, including dra- sional wrestler Chris Nowin- matic mood swings, personality ski had an experience so dis- changes, and loss of memory. In “REM Sleep Fturbing he remembers it vividly 14 some cases, CTE leads to severe de- years later. While sleeping one night, pression and even violence. Behaviour Disorder... he dreamt that he jumped up to catch Nowinski, who played on the Har- convinced Nowinski a falling object. Moments later, he vard University football team while woke up on the floor. He had leapt off doing his undergraduate degree there, that something was the bed and crashed into a nightstand. wrote Head Games: Football’s Concus- really wrong. He This incidence of REM Sleep Be- sion Crisis in 2006. The book examines haviour Disorder, a condition in the long-term effects of head trauma had post-concussion which people act out their dreams, among athletes and has since been syndrome.” along with pounding headaches and made into a documentary. nausea, convinced Nowinski that A year later, Nowinski and Dr. something was really wrong. He had Robert Cantu, a neurosurgeon who post-concussion syndrome. had treated him, founded what is nated to date, helping the bank cre- CTE, including preventing it from Despite the challenges ahead, That was the beginning of the end now known as the Concussion Leg- ate a compelling body of evidence starting or stopping the progression Nowinski is optimistic. “This is of his WWE career, and the start of a acy Foundation, a nonprofit or- that illustrates the connection of CTE. “The other challenge is pre- a fight we can win but we need life of advocacy. Perhaps more than ganization dedicated to advancing between brain trauma and CTE. vention,” he adds. “We can reduce everybody who cares about concus- any other individual, Nowinski is re- the study and treatment of brain Nowinski serves as Outreach, Re- the rate of CTE by changing the way sions and CTE to step up and play a sponsible for sparking the public trauma in athletes and other at-risk cruitment, Education, and Public we play sports — by banning tack- role — fans and athletes along with conversation about concussions and groups. The organization now has a Policy Leader for the organization. ling in kids’ football games, for ex- their parents and friends. We’re Chronic Traumatic Encephalopathy Canadian affiliate. In 2011, researchers studied the ample, and by restricting hitting building a movement,” he says. (CTE), a degenerative disease of the In 2008, the foundation part- brain of NHL enforcer Derek Boo- in practice in professional football “But it’s still early.” brain found in athletes with a history nered with the Boston University gaard, who died of an overdose of al- leagues. It’s the same logic that ap- of repetitive brain trauma. School of Medicine to form the BU cohol and painkillers, and determined plies to smoking,” he explains. “Cut- Those with CTE, including many CTE Centre. The centre operates he had been suffering from CTE. ting back on the number of ciga- former football and hockey play- the largest brain bank in the world. Nowinski says the end goal is for rettes you smoke in a day helps re- ers as well as boxers, suffer from More than 400 brains have been do- researchers to learn how to treat duce the risk of lung cancer.” Randi Druzin

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IN THIS ISSUE Multiple Sclerosis Brain Injury Brain Tumours The importance of finding Canada’s silent A current lack of the right therapy to epidemic and the Canadian data and how manage symptoms and challenges faced by building a registry will uphold quality of life. victims and caregivers. help save lives. p04–05 p06 p08

Photo: Yeganeh Ghasemi Discoveries on the Path to Cures Have the Potential to Improve Lives

Every nine minutes, a Canadian has a stroke — it is the leading cause of severe disability.

trokes often permanently sion of Alzheimer’s; the development alter the life of affected indi- of an inexpensive retina exam to detect viduals and their families, as early signs of Alzheimer’s; the imple- they can result in memory mentation of a sustainable early child- INSIGHT loss, paralysis, or diminished hood mental health intervention that vision, among other conse- engages families and communities; and quences. Finding a cure for stroke would the testing of a system that monitors Sbe transformative. mobility, balance, and gait to predict However, equally transformative are and prevent falls in dementia patients, Science Proves the improved patient outcomes being which can also be used to monitor re- achieved through research that increas- habilitation after a stroke. Program Helps es understanding of brain function and Other studies are focused on developing Inez Jabalpurwala leads to advances in prevention, diagnosis, President and CEO, Brain Canada or testing new treatments, including the Cognitive Function and treatment options. Canada is a world study of techniques to deliver drugs across leader in brain research, and our scientists the blood-brain barrier, which would dra- and clinicians are making contributions reducing the impact on the affected individ- matically improve treatment options for across the full spectrum from basic discov- ual’s quality of life after the stroke. many neurological conditions; the develop- Dr. Frank Knoefel ery through the pathway to cures. Brain Research can reduce stigma. In the case ment of therapies to treat the millions of Physician and Clinical Canada, with the financial support of of mental illness and addiction, improve- people worldwide who suffer from irrevers- Scientist, Bruyère Memory Program in Health Canada (through the Canada Brain ments in brain imaging have allowed us to ible vision loss, caused by the loss of the Ottawa and the Bruyère Research Fund) and many partners and see their biological basis — that these are neurons in the retina that sense light; and Research Institute donors, is funding research in this space. diseases of the brain with targets to de- the implementation of a physical exercise One example is the emergency stroke velop treatments and, one day, cures. regimen for individuals with spinal cord in- drug NA-1, currently being tested in a Research leads to new technologies jury to prevent secondary complications. clinical trial, which has shown the po- that can help reduce the burden of dis- The above examples, which are by no tential to prevent the death of neurons ease. For example, it can give someone means exhaustive, are an indication of when administered within three to four living with amyotrophic lateral sclero- the kind of impact that research invest- and half hours of the stroke. sis (ALS – also known as Lou Gehrig’s dis- ment is having on people today, and could Dr. Nouha Ben Gaied Director of Research When a person has a stroke, time is of the ease) a means to regain communication. have in the near future. and Development, the essence — 1.9 million neurons are lost every Prevention and diagnosis are also im- We call on all those who are part of the Federation of Quebec minute. This loss means that with every portant targets; the latter because the community supporting and advancing Alzheimer Societies half hour that passes, the likelihood of the earlier a disease is detected, the earli- brain research to help promote an under- patient making a positive recovery decreas- er treatment can begin. Projects sup- standing and vision of brain research as a es from anywhere between 10–20 percent. ported by Brain Canada include a pa- process, where every discovery carries the While not a cure, the impact of stroke could tient trial testing a combination of elec- potential to improve lives. be reversed and the damage mitigated by as trical stimulation and brain exercises With at least half a million Canadians much as 50 percent if NA-1 proves effective, to delay the onset and slow the progres- Inez Jabalpurwala suffering from dementia, and that total expected to jump by 66 percent in 14 years, scientists are looking for new ways to treat the condition.

In a recent 10-year study, the Advanced Cognitive Dementia: A Global Health Crisis Training for Independent and Vital Elderly (ACTIVE), determined that speed training — computer exercises that get users to visually process information more That Needs to Be Tackled quickly — dramatically reduces the risk of developing dementia and prevents cognitive decline. numbers of people living with dementia In May of this year, all member coun- Posit Science Corporation, whose Canadian part- will more than triple by 2050. The global tries of the WHO will be invited to ner is DynamicBrain, made a modern version of that economic impact of dementia is esti- adopt a Global Action Plan for demen- speed training as part of the cognitive training pro- mated to be 1 trillion dollars by next year. tia. Another prominent global organiz- gram BrainHQ. ation is the World Dementia Council, Frank Knoefel, a physician at the Bruyère Mem- MP What kind of research is which was created in 2013 by the for- ory Program in Ottawa and Clinical Scientist at the needed to face the challenge mer Prime Minister of the United King- Bruyère Research Institute, says it’s the only brain of dementia? dom, David Cameron, as an investment training program he recommends to patients and YJ There is currently no cure for the dif- in the cause for dementia. As I, a Can- his own family. “One of the benefits,” he says, “is that ferent diseases causing dementia; there- adian, currently chair the Council, Can- the algorithm adapts to the individual’s abilities and fore, extensive research is needed in ada is truly at the forefront of the global gently pushes them to improve.” Dr. Yves Joanette three areas: (a) how to identify the in- response to the challenge of dementia. BrainHQ exercises are designed to improve mem- Scientific Director, CIHR itial mechanisms responsible for de- ory, speed, and attention. With more than a hundred Institute of Aging mentia, (b) how to slow down or stop MP How can we help people peer-reviewed studies substantiating its claims, and Professor, Faculty of Medicine, the process once it has started, and (c) living with dementia? TIME magazine listing the ACTIVE study as a top University of Montreal how to help those living with dementia YJ People living with dementia can be scientific discovery of 2016, BrainHQ is used to help Chair, World Dementia Council to have the best possible quality of life. helped by a number of strategies. First, people at risk of developing dementia and to slow the Since no single researcher, university or a healthy diet and physical exercise are progression of the condition in those who have it. Mediaplanet How much of country can alone come up with the an- good for both the heart and the brain. Dr. Nouha Ben Gaied, Director of Research and a public health challenge is swers and solutions, the research needs Second, keeping the brain active, main- Development at the Federation of Quebec Alzheimer dementia for Canada? Is the to be collaborative and inclusive of all taining a rich social network, and liv- Societies, says her organization is working with challenge the same for all disciplines and sectors, such as the re- ing with an optimistic attitude can also DynamicBrain to incorporate BrainHQ into its countries, even developing ones? search supported by the CIHR Dementia have positive effects. Third, supporting program and services. “There are several brain training Dr. Yves Joanette Dementia is a devas- Research Strategy. the caregivers is important, as their role programs out there,” she says, “but what matters to us tating health condition that is character- is critical to the health and well being of is the scientific data behind BrainHQ.” ized by a progressive loss of autonomy due MP Is there a global response the person living with dementia. Final- to the impairment of memory and other to the challenges of dementia? ly, enhancing the awareness of dementia Randi Druzin brain functions. Nearly 600,000 Can- Where does Canada fit in? in society, and understanding the needs adians are currently living with dementia YJ The World Health Organization con- of those living with dementia, will help and this number will double over the next siders dementia to be one of the most them to enjoy an active presence in soci- 20 years. In other parts of the world, the important public health challenges. ety as long as possible. Sponsored by www.dynamicbrain.ca Check out the extended version of this article at personalhealthnews.ca

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Publisher: Zoya Zajac Business Developer: Jacob Weingarten Managing Director: Martin Kocandrle Production Director: Carlo Ammendolia Designer: Yeganeh Ghasemi Lead Designer: Matthew Senra Contributors: Daniel C. Andreae, Deanna Groetzinger, D.F. McCourt, Gavin Davidson, Inez Jabalpurwala, Michele Sponagle, Randi Druzin, Richard J. Riopelle, Suzanne McKenna Cover Photo: Andres David Lopez Photo credits: All images are from Getty Images unless otherwise accredited. Send all inquiries to [email protected] This section was created by Mediaplanet and did not involve National Post or its Editorial Departments. ADVERTISEMENT MEDIAPLANET 3

— drug therapies that lower the risk of Alzheimer’s in adults with risk factors. The challenge for scientists is to speed the best of these solutions from the lab to those in need.” A big hurdle in getting new brain health drug and non-drug therapies to market is recruiting enough volunteers into clinical trials. The traditional process of finding volunteers through doctors’ offices isn’t effective, because adults who see their doctor for a memory issue are often too far into the disease process to qualify for at-risk studies. And print and TV ads have been attracting too many healthy adults. Cogniciti’s assessment addresses this issue by inviting adults who have completed the test to join a free Research Registry for brain health studies. Cogniciti’s team uses the data from the assessment to match Registry volunteers to clinical research studies that fit their brain health scores and health history. The result: a much smoother and effective process for all concerned.

The importance of being proactive Shirley Whitfield knows all too well how Most adults find it more difficult to Managing your brain health dementia can shatter lives. Both of her remember names, faces, and dates as made easy parents and all four of her grandparents they age. But many struggle to get an In addition to helping adults proactive- suffered from the disease. ARE YOU WORRIED answer to the question, are those chan- ly manage their brain health, Cogniciti’s “I remember as a young child be- ges due to normal aging or are they an assessment is playing an important role ing quite frightened by the behaviours early sign of something more serious in developing the next generation of de- of my grandparents due to the impact such as Alzheimer’s Disease? mentia therapies. Historically, research- of their cognitive disorders,” says the ABOUT YOUR That is why Baycrest Health Sci- ers have focused on finding solutions for Windsor, ON resident. ences, a world leader in the research people suffering from Alzheimer’s Dis- Dementia also figured prominently on memory and aging, created the ease. While this important work con- in Whitfield’s work life. A retired geriat- Cogniciti Brain Health Assessment. tinues, new research is concentrating rics nurse, she regularly witnessed how This online tool has been designed to on prevention: helping adults at risk of memory problems frustrated patients MEMORY? meet the needs of concerned boomers dementia stay healthy longer. and diminished their quality of life. and seniors. It is free, private, online, “Once Alzheimer’s disease starts This aging-related disease is more top- Take the free online takes just 20 minutes to complete, and interfering with day-to-day living doc- of-mind for Whitfield now that she’s ap- has been research-validated to provide tors can’t do anything to stop its pro- proaching 70, and because dementia is assessment created by leading adults ages 50–79 with an immediate gression. But medical science does often genetic. brain health score and an answer to know how to maximize healthy living “My personal history combined brain health scientists. the question — is my memory normal in cognitively healthy adults and those with my work experience have left me or should I see my doctor? with dementia through smart lifestyle hungry for better ways to proactively More than 50,000 Cogniciti assessments choices such as exercise and diet,” says manage my brain health,” she says. have been completed by adults across Can- Michael Meagher, President and CEO Proactively managing your brain ada and beyond. If you have a desktop or of Cogniciti (a subsidiary of Baycrest). health is easy. All it takes is 20 minutes laptop computer with internet access you “In addition, there are now numerous and a visit to www.cogniciti.com. can too. Simply go to Cogniciti’s website: drugs in clinical trials that developers www.cogniciti.com. hope will become ‘statins for the brain’ Gavin Davidson

Is my memory normal or should I see a doctor? Take the free online brain health assessment validated by scientists from Baycrest, a world leader in the research of memory and aging. Many adults over the age of 50 have a little more difficulty than they used to remembering names, faces, and dates. They wonder if this is simply normal aging or something to discuss with their family doctor. There is now an online tool to help with that decision that has been research-validated to help you to answer this question.

The Cogniciti Brain Health Assessment is: Free Quick 20 minute online test Private Science-validated for ages 50 – 79

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INNOVATION Available MS Treatments Have Nearly Tripled Since 2005

ou may know that Can- ada has the highest rate of multiple sclerosis (MS) Dr. Jiwon Oh in the world, with an esti- Staff Neurologist, St. Michael’s Hospital, mated 100,000 Canadians Scientist, Keenan Research Centre of the living with the disease. Li Ka Shing Knowledge Institute, But did you know that ap- Assistant Professor, Division of Yproximately 85 percent of Canadians with MS Neurology, University of Toronto are initially diagnosed with treatable relapsing-remitting multiple sclerosis (RRMS)?

Effective therapies exist for RRMS The three main types of multiple sclerosis are parent progression of the disease during peri- earlier,” says Dr. Oh. “Another huge benefit of An exciting time in MS research PPMS (primary-progressive multiple sclero- ods of remission. Although not all people with using new technologies such as MRI is that Twenty years ago, tailoring MS treatments to sis), SPMS (secondary-progressive multiple MS will experience all symptoms, the most they help us to personalize treatment for indi- individual patients was unheard of, but the sclerosis), and RRMS, which is by far the most common include vision problems, spastici- vidual patients, which is currently a huge un- treatment scenario of multiple sclerosis has common. The two main presenting types of ty or stiffness, bowel and bladder problems, met need in clinical practice.” radically changed. Dr. Oh points to the fact MS are RRMS and PPMS, which unfortunate- fatigue, episodic bouts of numbness, and pro- that there were no disease-modifying treat- ly does not yet have any approved treatments. blems with cognition (learning and memory Having multiple treatment options ments available until the early 1990s, and it The number of women and men affected by or information processing). for MS is beneficial for patients was not until 2005 that a shift truly occur- PPMS are approximately equal, and the onset As MS is a variable disease, and no single pat- red. Now, the increasing availability of effec- tends to be in one’s 40s or 50s. In RRMS, for Early diagnosis is key hway, diagnostic test or reliable biomarker tive disease-modifying therapies has shifted which numerous effective therapies are avai- MS attacks the protective covering — myelin has yet been identified to predict how patients the aim of therapeutic interventions from a lable, women are affected two to three times — of the brain and spinal cord, as well as the will fare on specific treatments, it is essential reduction in relapses to the absence of any as often as men and most people are diagno- axons underlying myelin, causing inflamma- MS patients have multiple treatment options, signs of MS. sed in their 20s and 30s. Over time, people li- tion and damage. When this happens, the usu- as well as the flexibility to transition to an- “Since 2005, we have nearly tripled the ving with RRMS can transition to SPMS. al flow of nerve impulses is interrupted or dis- other treatment when needed. Moreover, the- agents available to treat people with RRMS,” torted. Because the re are genetic variants within the disease that says Dr. Oh. “In part because of the increased relapsing phase of have been shown to vary significantly across treatment options, but also because our the disease is cha- different populations and individuals, heigh- understanding of MS is very quickly changing, “It is essential MS patients have racterized by ongo- tening the need for individualized therapies. doctors have become much more aggressive multiple treatment options.” ing inflammation, There are a growing variety of ways to main terms of identifying MS early and quick- it is essential to di- nage MS symptoms, ranging from pharma- ly changing treatments as required by a pa- agnose the disease cological treatments to non-medicinal stra- tient’s needs.” “MS is distinct from many other common and begin treatment as early as possible. tegies such as physiotherapy, occupational Researchers such as Dr. Oh continue to chronic neurological diseases because the Medical history and a neurological exam are therapy, and diet and exercise programs. Gi- work toward finding the cause of MS, devel- median of onset is in one’s late 20s and ear- fundamental to diagnosing MS, but such a di- ven that MS is a lifelong and, as yet, incurable oping better treatments with fewer side ef- ly 30s,” explains Dr. Jiwon Oh, a physician at agnosis is only made once other potential cau- disease, the long-term safety and tolerability fects, and ultimately hope to cure the disease. St. Michael’s Hospital and a leader in MS re- ses for symptoms have been ruled out. As the- of treatments are important considerations But in the meantime, it is heartening and im- search and treatment. “So as you can imagine, re is no one test that can be used to diagno- in selecting therapies for individual patients, portant to know that through a variety of this is a disease with the potential to signifi- se MS, doctors leverage a variety of available both in terms of efficacy and compliance. currently available treatment options, health cantly impact people’s lives.” tools in diagnosing patients as quickly and ac- “One of the greatest difficulties we have is and wellness, including emotional well- RRMS is characterized by clearly defined at- curately as possible. that MS is an extremely variable disease, so being, can be achieved even in the presence tacks of new or increasing neurologic symp- “Although diagnosis can sometimes be chal- when you’re diagnosing someone it can be of a chronic illness or disability such as MS. toms, which are followed by periods of remis- lenging in the initial stages, the increased av- tricky to decide on the right course of treat- sion, during which symptoms may improve ailability and use of magnetic resonance ima- ment,” says Dr. Oh. “That’s why we need tech- or disappear. While some symptoms may con- ging (MRI) has greatly facilitated the diagno- nology not just for diagnosis, but for helping tinue and become permanent, there is no ap- sis of MS, and we are now able to identify MS us to tailor treatment appropriately.” Gavin Davidson WHAT IS MS?

MS is an autoimmune disease of the central nervous system (brain, spinal cord). POTENTIAL RISK FACTORS The disease attacks myelin, ifestyle habits the protective covering of the ge nerves, causing infl ammation ender and often damaging the myelin. amily history Myelin is necessary for the transmission of nerve impulses SYMPTOMS COMMON ision roblems through nerve fi bers. treme fatige ladder roblems ack of coordination ognitie imairment If damage to myelin is slight, eakness ood changes nerve impulses travel with Tingling minor interruptions; however, if maired sensation damage is substantial and if scar tissue replaces the myelin, nerve impulses may be completely IMPACTS hysical ocial disrupted, and the nerve fi bres inancial themselves can be damaged. ental

eole aged 20–30 are the MOST DIAGNOSED

orce ltile clerosis ociety of anada A SPONSORED FEATURE BY MEDIAPLANET MEDIAPLANET 5 Finding the Right Therapy Combination for MS Patients

Rona McGugan is a beacon of positivity. Although she suffers from multiple sclerosis (MS), a lifelong disease that requires multiple types of treatment, she has a good quality of life and hope for the future due to finding the right combination of therapies.

Facing the diagnosis along with yoga every morning, which was sug- MS is currently classified as an autoimmune gested by McGugan’s physiotherapist. disease of the central nervous system, which “Dr. Oh recommended this therapy combin- comprises the brain and spinal cord. While it is ation right after my first episode, and I’ve been most often diagnosed in young adults aged late on the same treatment for the past four-and- 20s and early 30s, younger children and older a-half years,” says McGugan. “It’s been a huge adults are also diagnosed with the disease. De- help to be on the right therapy, as I have not had spite decades of research, the cause of MS re- any more episodes since I started treatment.” mains a mystery. There are theories that environmental, genetic, and biological factors all Focusing on the positive play a role in MS. While there is currently no cure, every day resear- An exciting time in MS research MS is unpredictable and can cause symp- chers are learning more about what causes MS Twenty years ago, tailoring MS treatments totoms such as extreme fatigue, lack of coordin- and are zeroing in on ways to prevent it. Studies individual patients was unheard of, but the ation, weakness, tingling, impaired sensation, funded by the MS Society are looking at whether treatment scenario of multiple sclerosis has vision problems, bladder problems, cognitive certain risk factors, such as lifestyle habits, radically changed. Dr. Oh points to the factimpairment, and mood changes. Its effects can age, gender, or family history impact a person’s that there were no disease-modifying treat-be physical, emotional, and financial. susceptibility to MS. Progress is being made every ments available until the early 1990s, and it “When I was diagnosed, my condition was day and more new treatments are on the horizon. was not until 2005 that a shift truly occur-pretty awful,” recalls McGugan, who suffers “It is a huge motivating force and extreme- red. Now, the increasing availability of effec-from relapsing-remitting multiple sclero- ly rewarding to be able to see things that were tive disease-modifying therapies has shifted sis (RRMS). “After suffering through dizziness, just a concept at one point being applied eve- the aim of therapeutic interventions from a memory loss and loss of concentration, I had a ry day in practice,” says Dr. Oh. “I continue reduction in relapses to the absence of any serious episode which led me to visit my doctor.” to balance research responsibilities with my signs of MS. “Since 2005, we have nearly tripled the agents available to treat people with RRMS,” says Dr. Oh. “In part because of the increased “After suffering through dizziness, memory treatment options, but also because our loss and loss of concentration, I had a serious understanding of MS is very quickly changing, doctors have become much more aggressive episode which led me to visit my doctor.” in terms of identifying MS early and quickly changing treatments as required by a patient’s needs.” Finding the right therapy clinical duties because it directly benefits the Researchers such as Dr. Oh continue to RRMS is characterized by clearly defined attacks patients in front of me.” work toward finding the cause of MS, devel-of neurologic symptoms, much like the one ex- This particular patient, Rona McGugan, has al- oping better treatments with fewer side ef-perienced by Rona, and it is treatable. But the re- ways been one to look on the bright side. She is fects, and ultimately hope to cure the disease.cent explosion in available therapies for RRMS certainly very thankful to have a leader in MS re- But in the meantime, it is heartening and im-has brought new complexities to treatment search and treatment such as Dr. Oh based right portant to know that through a variety ofdecisions faced by physicians. More and more, here in Canada. And she is optimistic that the currently available treatment options, health doctors need to anticipate the impact of a par- tremendous progress made in MS treatment over and wellness, including emotional well- ticular therapy on a specific patient before de- the past 20 years is just the beginning. being, can be achieved even in the presenceciding on treatment sequencing. “You can never lose hope,” she says. “I’m thank- of a chronic illness or disability such as MS. McGugan worked closely with her physician, ful I’m in this treatment program because it’s Dr. Jiwon Oh of St. Michael’s Hospital, to de- been a great help to me and I have hope that velop a multi-pronged approach to treatment things will get even better in the future.” that includes a disease modifying therapy and Gavin Davidson daily oral medications to manage symptoms, Gavin Davidson

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NEWS

Brain Injury: Canada’s Silent Epidemic

Brain injuries can be caused by many to $8.2 billion between 2011 and 2031, factors including motor vehicle ac- which exceeds the indirect cost of cidents, falls, sports injuries, physic- the sum of six other neurological al abuse, and alcohol-related inci- conditions, including epilepsy and dents. Generally, the public doesn’t multiple sclerosis, combined. realize how widespread brain injuries The stress on caregivers can be are or the extensive and potentially huge. As one caregiver noted, “Brain devastating effects they can have on injury doesn’t just change the life of physical, cognitive, emotional, and the individual. It changes the lives behavioural levels. A traumatic blow of everyone around them.” When to the head can lead to the disruption brain injury is accompanied by cog- of brain functioning, resulting in con- nitive impairment and/or behaviour- fusion, forgetfulness, headaches with al issues, it can cause caregivers (most Dr. Daniel C. Andreae Suzanne McKenna Dr. Richard J. Riopelle Honourary Chair, associated symptoms, and behaviour- often the family members of those af- System Navigator for ABI; Co-Chair, Board of Brain Injury Canada al concerns, as well as a range of emo- flicted) potentially overwhelming dis- Member, Board of Directors, Directors, Brain Injury Canada tional issues including depression. tress. These indirect and human costs Brain Injury Canada Although some head injuries may are added to financial costs that often not immediately appear to be ser- include out-of-pocket expenses for ious, many have long-lasting and very care and medication. Compounding and their families are often complex and comprehensive approach, includ- be done, from public education to detrimental effects. this situation is the lack of regulatory and multifaceted, as several factors ing a robust applied research agenda. active government leadership. The blood/body fluid tests for victims of — namely, the interaction between The federal government is currently tens of thousands of brain injury pa- Complex challenges for victims brain injury, which are key to accur- genes, the environment, and life- polling Canadians about its proposed tients and their families and care- and caregivers alike ate diagnoses and effective treatment. style — play a role when it comes inclusive Disabilities Act. In tandem, givers deserve no less. According to Brain Injury Canada, The Canadian Traumatic Brain Injury to chronic conditions. Treatment Employment and Social Develop- 160,000 Canadians suffer a brain in- Research Consortium is currently ad- often includes modifiable personal ment Canada has crafted a Social De- Daniel C. Andreae jury annually. The World Health Or- dressing this difficult situation. lifestyle factors such as sleep/relax- velopment Partnership Program in- Suzanne McKenna ganization estimates 10 million Navigating the health care sys- ation, exercise/movement, nutri- volving community-based disability Richard J. Riopelle people per year are affected by a trau- tem can be difficult and is made tion, stress/self-management, and groups. This program is informed by matic brain injury (TBI); however, even more challenging by the lack social relationships. Australia’s existing inclusive National Sponsored by this number is likely underestimated of uniformity of care. Some treat- Disability Insurance Scheme. due to common misconceptions as ment centres, for example, are de- Making progress to offer The good news is that signifi- to what constitutes a brain injury. In signed to offer acute care and may better care cant progress is being made both in Canada, income lost (indirect costs) not accept referrals for patients who Affecting all age groups and areas of terms of bio-medical research and from disabilities related to brain in- need ongoing care. To further com- the country, the epidemic of traumat- clinical care for patients with brain juries are predicted to rise from $7.3 plicate things, the needs of patients ic brain injuries requires a proactive injuries. But much more needs to Steps Toward a Canadian Action Plan for Brain Health Kayleigh has Rett syndrome. ilies affected by brain conditions. with brain conditions together with NHCC volunteers Cynthia Milburn (Canadian Epilepsy Alliance) and Seemingly healthy until she Brain conditions affect an individ- experts, finally develop health and was 23 months old, she then Terry Boyd (Ontario Rett Syndrome Association) meet with MP Don ual’s mobility and damage dexter- non-health services to truly support Davies to discuss the Canadian Action Plan for Brain Health. lost the ability to speak, to ity; they impair memory and the those living with brain conditions, use her hands, and eventually ability to think; they make it hard to their families, and caregivers. to walk. see, speak, and communicate. Car- NHCC is a coalition of organiza- aring for a child with a ing for someone with a brain conditions representing individuals and neurodevelopmental disor- tion leaves many Canadian families families affected by brain diseases, der — like Rett syndrome — and caregivers feeling isolated and disorders, and injuries. can consume the life of an struggling to maintain their own Centire family. When Kayleigh reached emotional and mental health. Go to www.mybrainmatters.ca to learn 18, she was discharged from five spe- Neurological Health Charities Can- more about the Canadian Action Plan cialists at the local children’s hospital ada (NHCC) know, there are solutions for Brain Health. and her care switched to the family — solutions that build directly on the doctor. He became responsible for the findings of the ground-breaking Na- Deanna Groetzinger management of her seizures, cardiac tional Population Health Study of and urological issues, gastrostomy Neurological Conditions. tube, osteoporosis, pain, and so much The first step is for the Govern- more. Leaving the coordinated care ment of Canada to work with NHCC at the children’s hospital for decen- on the first-ever Canadian Action Sponsored by tralized medical care has been over- Plan for Brain Health. The Action whelming for Kayleigh and her family. Plan would spur research into des- Kayleigh’s story is one amongst perately needed treatments and millions of individuals and fam- cures and would, by bringing people

The University of Lethbridge congratulates Dr. Bryan Kolb on his appointment as an officer of the Order of Canada.

Dr. Kolb is an internationally renowned behavioural neuroscience expert and academic, and his explorations have revolutionized brain science. A University of Lethbridge faculty member since 1976, co-founder of the University’s Canadian Centre for Behavioural Neuroscience, and honorary degree recipient, Kolb has been instrumental in establishing the U of L as a world leader in neuroscience research.

We thank Dr. Kolb for his pioneering research, inspiring a passion for discovery in countless students, and his dedication to advancing the health of Canadians for generations to come. A SPONSORED FEATURE BY MEDIAPLANET MEDIAPLANET 7

INSPIRATION March of Dimes Canada Helps Stroke Survivors Rediscover Joy in Life Tom Rideout was mid-conversa- “Our organization is not focused on tion when he felt an intense pain in finding a cure for stroke,” says president his head. The next thing he remem- and CEO Andria Spindel. “We’re focused bers experiencing was waking up in a on providing support, care, and educa- Toronto hospital four weeks later and tion for survivors and the people close to learning he had suffered a stroke. At them. We’re focused on improving the the age of 46, he was unable to speak or survivors’ quality of life. We would like move the right side of his body. to see them lead independent lives full In the months that followed, Ride- of activity, engagement, and meaning.” out found life to be unbearable. “I To that end, the March of Dimes Can- didn’t want to live because I felt use- ada runs the Aphasia and Communi- less,” he says, looking back 13 years. cations Disabilities Program, which is After suffering another stroke, he at- funded by the Central Local Health In- tempted suicide for a second time — tegration Network. Its mandate is to this time saved by bystanders in the improve the quality of life for surviv- subway. “They asked me what was ors with aphasia — the loss of the abil- wrong and I just broke down in tears.” ity to articulate ideas or understand Rideout turned a corner when he language, resulting from brain damage was put in touch with Stroke Recovery caused by injury, stroke, or disease — Canada, a national service run through through services and mutual aid groups. March of Dimes Canada offering sup- Speech-language pathologists play a key port, education, and community pro- role in assessing and treating survivors’ grams for stroke survivors, along with communication and cognitive skills. their family members and caregivers. Among the many other services the “When I talk to other “I attended support group meetings, organization provides is the Stroke and as I got more involved I started Recovery Warmline. It connects sur- survivors, I urge them spending more time laughing and less vivors and their caregivers with vari- time crying.” ous services and peer support groups, Rideout is just one of many stroke which organize local meetings, activ- not to give up. I tell them survivors who has found a new lease on ities, and seminars providing prac- life through March of Dimes Canada, tical and emotional support. there is life after stroke.” one of the largest community-based Fourteen years after contemplating service providers for people with suicide, Rideout is dedicated to help- physical disabilities in the country. ing other stroke survivors rediscover Since the 1980s, the organization the joy in life through Peers Fostering has devoted growing amounts of re- Hope, a program in which survivors sources to helping stroke survivors, visit hospitals and support groups. a population that includes people of “When I talk to other survivors, I urge both genders and all ages. In fact, sur- them not to give up. I tell them there vivors of stroke comprise the highest is life after stroke,” he says. “No one percentage of people affiliated with knows that better than me.” March of Dimes Canada. With at least Stroke Recovery Canada Warmline: Tom Rideout, Stroke Survivor, March of Dimes Canada. Photo: March of Dimes Canada one Canadian suffering a stroke every 1.888.540.6666 10 minutes — the incidence is higher Stroke Recovery Website: in black and South Asian communities www.marchofdimes.ca/EN/ — there are about 400,000 survivors programs/src/Pages/src.aspx and that number is expected to grow due to Canada’s aging population. Randi Druzin

Research Raises Hope for Reversing Neurological Effects of Early

Adversity Photo: Bryan Kolb Canadian Centre for Behavioural Neuroscience, University of Lethbridge

r. Bryan Kolb played search has focused on understand- knowledge not just to neuroscience, from one generation to another — al- a founding role in the ing how early experiences alter brain but also to society in general, Kolb is tering the behaviour of the offspring. study of neuroscience. and behavioural development, in both now dedicating much of his time to Through this explanation, the elders As a neuroscientist positive and negative ways, including talking about the implications of this began to see the problem of residen- at the Canadian Cen- whether it is possible to intervene after important discovery. tial schools in an entirely new light. treD for Behavioural Neuroscience negative events and reverse, or at least “Given my age, I see my role “It gives us an explanation for how (CCBN), Kolb’s primary interests are reduce, the effects of early adversity. changing,” says the 70-year-old Kolb. severe stress, for example in residen- in brain development, brain plas- “Our brains actually form using “I give a lot of public talks to try to tial schools, could cross generations ticity, and brain changes over time, what I call the Michelangelo Tech- bring this knowledge to the com- and cause all kinds of problems later,” including after injury. A recipient of nique,” explains Kolb. “Much like he munities not only in southern Al- says Kolb. “So how can we change the Order of Canada, Kolb has pub- did when chiselling David from a sol- berta, but beyond, to try to explain this? I think the place to start is recog- lished five books and more than 400 id block, we start out with a brain that some of these things in words that nizing why it’s happening.” Dr. Bryan Kolb Canadian Centre for articles and chapters. In the process, has two-fold more cells than an adult people can understand.” Thanks to institutions like the Behavioural Neuroscience, and with the help of a pioneering brain before environmental chisels CCBN, recognition is certainly begin- University of Lethbridge faculty and research team, Kolb has start shedding cells once we are born.” Using neuroscience to help ning to spread. But the wide-ranging turned the University of Lethbridge, a Animal research by Kolb, his col- native communities heal societal implications of the ongoing relatively young institution currently league Dr. Robbin Gibb, and their stu- One of Kolb’s most memorable talks research, being conducted by Kolb at celebrating its 50th anniversary, into dents has even shown that a father’s was a public lecture in Lac La Biche, AB, the University of Lethbridge, suggests a hotbed for neuroscience research. experiences before conception and a attended by many First Nations elders. the most important work — actually mother’s experiences while pregnant He spoke about how stress and abuse reversing the neurological effects of Reducing the effects of early can change the brains of their off- during childhood can cause certain early adversity — is still to come. adversity on the brain spring and those of subsequent gen- genes in the brain to be turned on or off, Over the past two decades, Kolb’s re- erations. Realizing the value of this and how these changes can be passed Gavin Davidson 8 PERSONALHEALTHNEWS.CA A SPONSORED FEATURE BY MEDIAPLANET

INNOVATION New Technologies for Healthy Aging and Better Brain Health Sponsored by As Canada’s population ages, finding ways to support older Canadians in living full and independent lives is crucial.

GE-WELL is a pan-Canadian Not just better technology, but network of researchers, better access to it non-profits, industry, gov- “We have over 40 research projects under- ernment, older adults, and way that will benefit older people, includ- caregivers that is harnessing ing those with neurological conditions, and Athe power of new technologies to provide their caregivers — while also producing eco- useful solutions for healthy aging. nomic and social benefits for Canadians and “When I was fresh out of engineering the global community,” say AGE-WELL Sci- school, I met a man who was caring for entific Co-Director Dr. Andrew Sixsmith. his wife who had early onset dementia,” “One common challenge that people says AGE-WELL Scientific Co-Director Dr. have is identifying the services, supports Alex Mihailidis. “He was telling me about and technologies that are available to them, all the difficulties they had and he said, and finding the right ones for their needs,” ‘Wouldn’t it be great if technology could he says. AGE-WELL teams are develop- help us solve these problems?’ That idea ing powerful online platforms that match really stuck with me.” people with the right solutions. Interwoven with all these initiatives are Solutions for aging’s varied issues questions of privacy, ethics, and access. AGE-WELL research. Photos: AGE-WELL Today, AGE-WELL research teams are de- What are the consent issues surrounding as- veloping humanoid robots that can assist sistive technology for people with demen- older Canadians with dementia in their tia? When does Internet connectivity of homes by reminding people of tasks and smart home systems become a privacy con- routines, playing brain-strengthening cern? What can be done to enhance access to games with them, and even acting as a re- technologies across the country? AGE-WELL mote avatar for medical professionals. sees these questions not as afterthoughts Another team is testing a smart glove but as fundamental to the mission. which takes the same vibration-damping It’s this big picture approach that is posi- technology that stabilizes buildings against tioning Canada to become a world leader in earthquakes, and uses it to reduce hand the development of technologies for healthy tremors from Parkinson’s disease and other aging. “Canada has great talent in this area,” movement disorders. says Dr. Mihailidis. “And a key mandate of There’s a new tablet software that ana- AGE-WELL is to bring everyone together and lyzes a person’s speech to detect and mon- make Canada a global leader in this field.” itor Alzheimer’s. And an add-on system Launched in 2015, AGE-WELL is a federally that turns a regular powered wheelchair funded Network of Centres of Excellence. into one that automatically alerts the user to obstacles. The list goes on. D.F. McCourt (Left) Dr. Pooja Viswanathan and the innovative add-on feature that can transform a regular powered wheelchair into a “smart” wheelchair. (Right) Dr. Goldie Nejat and Casper the robot.

Brandon battled against brain cancer for 14 years. Photos: Jennifer Gouchie-Terris BUILDING A BRAIN TUMOUR REGISTRY WILL SAVE CANADIAN LIVES An estimated 55,000 Canadians live Brandon, was just 18 years old when Gouchie-Terris and her husband with brain tumours, with 27 new he passed away, ending his battle Darren are continuing the work they diagnoses made every day, accord- with a non-malignant low-grade gli- started. Last fall, the couple embarked ing to the Brain Tumour Foundation oma, which began at age four. on a 500-km trek as part of the Rid- of Canada. While those are import- Brandon’s initial symptoms — ing for the Registry fundraiser and ant figures, a complete picture of vomiting, headaches, and a loss of bal- cycled from Cambodia to Bangkok, brain tumour health issues amongst ance — had doctors stumped. “There Thailand, raising a total of $60,000 for Canadians is not available due to a was a long time before diagnosis be- the cause. “I find comfort in moving lack of crucial data. cause brain tumours just aren’t on the forward with what we started, estab- Dr. Faith Davis, Vice-Dean of radar for many physicians,” Gouch- lishing the registry and helping other the University of Alberta’s School ie-Terris says. families affected by brain tumours,” of Public Health, is determined to Unfortunately, over the last 50 Gouchie-Terris says. “It’s Brandon’s change that. Backed by 20 years of years, very little progress has been legacy. I can still hear him saying, experience with brain tumours, she made in the treatment and long- ‘Good for you, mom! I’m so proud!’” has become one of the leaders in term survival rates of brain tumour creating a Canadian Brain Tumour patients. A lack of good statistics Getting involved Registry. “There’s an urgent need for plays a big role in this stagnation. With much important groundwork data to be recorded completely and Things are changing, however. completed, the next step for moving accurately,” she says. Gouchie-Terris was successful in the registry forward is getting the ne- The Brain Tumour Registry could collaborating with her local member cessary funds. The provinces and the produce its first report in 2019 — one of parliament, Bill Casey, to intro- medical community are on board. that could save lives by providing duce the Private Members Bill M-235 Now, it’s up to Canadians to build on health care professionals with more to establish the Canadian Brain Tu- the efforts of people like Dr. Davis and comprehensive data. “Right now, mour Registry on Valentine’s Day, Jennifer Gouchie-Terris by donating to we just don’t know how widespread 2007. She and Brandon met with for- the Brain Tumour Foundation of Can- Brandon, then 17, and his mom, Jennifer. brain tumours are in this country,” mer Prime Minister Stephen Harp- ada (braintumour.ca), the non-profit Dr. Davis explains. “The figures we er in Ottawa just before the bill was organization currently celebrating 35 have are based on statistics from the passed in the House of Commons. years of providing hope and support. United States that may not apply It was a victory, but there was no “This registry is within reach if we here. Canada may have some of the money attached to the bill, and the can get the funds needed,” Gouchie-Ter- highest rates of brain cancer in the need for funding is critical. ris says. “We hope to build a tool that world, according to one report.” Brandon worked to boost awareness, will help us understand brain tumours visiting schools, hosting and funding better and to spare Canadian families A mother’s quest to assist others fundraising events, and sharing his the heartache we experienced.” As a mother who lost her son to a story far and wide. “He was very un- brain tumour, Jennifer Gouchie-Ter- selfish,” his mom says. Even after his Visit www.BrainTumour.ca for ris, a journalist from Riverview, NB, death in October of 2012, he fought for more information. is equally committed to making a the cause by donating his organs and national registry a reality. Her son, brain to research. Michele Sponagle