E V E R Y T H I N G
H U M A N L Y
P O S S I B L E
Solving the puzzle of recovery from brain injury
4 Consumer technology
Can it improve quality of life?
6 Mike Langevin’s story
Living with a brain injury
8 Brain injury research
The latest findings
10 Toronto Rehab news
Hospital expansion and more
12 Depression and disability
“I didn’t see a future at all.”
15 Making life better
Recreation room planned
16 Post script
Una Villiers revisited
The Toronto Rehabilitation Institute is at the forefront of one of the most important and emerging frontiers in health care today—rehabilitation science. As the University of Toronto’s fully affiliated teaching and research hospital in adult rehabilitation, complex continuing care and long-term care, our goal is to advance rehabilitation and enhance quality of life for the 4.4 million Canadians who experience disabling injury and illness. Toronto Rehab magazine Spring 2009, Volume 9, Number 1 Inquiries and requests to reprint/ return undeliverable Canadian addresses to: Marketing & Communications Toronto Rehab 439 University Avenue, 5th Floor Toronto, Ontario, Canada M5G 1Y8 Telephone: 416-597-3422, ext. 3425 E-mail: email@example.com Web site: www.torontorehab.com
Editor Production Coordinator/Writer Contributing Writer Design Cover Photo Photography
Jennifer Ferguson Annie Atkinson Margaret Polanyi wymandesign.ca Bob Anderson / Masterfile Jim Atkinson / MediMedia Group Jenya Zukershtein Mark Ridout / eyecontact Illustrations Joel Verwegen; istockphoto Digital image modification Ron Giddings Printing TI group
One in two Ontarians has some experience with physical or cognitive impairment—either personally or within their family circle. That means rehabilitation is a personal issue to half of the people in the province. Although rehabilitation and complex continuing care hospitals don’t have a particularly high profile, when given information about them and an opportunity to consider their value, Ontarians rank the services these hospitals provide among the top health care spending priorities—even ahead of reducing emergency room crowding. These findings are from a recent study to determine people’s awareness of and attitudes toward rehabilitation and complex continuing care hospitals. The study was conducted by Innovative Research Group for Toronto Rehab, Bloorview Kids Rehab, Providence Healthcare, St. John’s Rehab Hospital, Bridgepoint Health and West Park Healthcare Centre. Other key findings of the study include: • Of the one in five people who has had a personal experience with a rehabilitation or complex continuing care hospital, 71% were satisfied with that experience. • 67% of people strongly agree that after a health crisis, it is important to return people to a state of health as close as possible to their original condition. • 63% strongly agree that small gains in independence make a significant difference in the quality of life for patients. According to Innovative Research, only about one in 10 studies results in findings where up to two-thirds of people strongly agree with a given statement. The above findings show significantly high levels of support for the work rehabilitation and complex continuing care hospitals do to help people achieve complete or near complete recovery. They also indicate that Ontarians almost equally value the smaller gains in independence that can have a positive impact on people’s lives.
For half of Ontarians, it’s personal! With an aging population, more lives being saved due to medical advances and a 22% increase in Canada’s disability rate between 2001 and 2006 (with almost half of that increase in the 45 to 65 age group), there will be growing demand for rehabilitation services. Interestingly, of those surveyed who have not had a disability, 47% believe that at some point in their lives they will need the services these hospitals offer; yet only 54% are confident the services they need will be there for them. Before participating in the awareness and attitudes survey, people were asked to rank six spending priorities for Ontario’s publicly funded health system. Originally, they ranked the following statement as fifth in the list of six possibilities: “Ensuring that Ontarians with temporary or permanent disabilities from illness or injury are able to improve their quality of life.” After completing the survey and learning more about the nature and benefits of rehabilitation and complex continuing care, they reranked the statement third behind only “Ensuring that all Ontarians have a family doctor” and “Reducing wait times for some procedures.” With better understanding of and access to rehabilitation and complex continuing care services, this hospital sector can both help improve people’s lives and the overall functioning of the province’s health system. Two-thirds of those surveyed agree that rehabilitation and complex continuing care hospitals can free up space in emergency rooms and reduce wait times. Clearly, Ontarians are personally touched by the work of rehabilitation and complex continuing care hospitals, and value them. Rehabilitation makes a very real and tangible difference in helping people with disabilities move on with their lives—from assisting a child with cerebral palsy to become more independent, to restoring the health and quality of life of an adult
One in two Ontarians has some experience with physical or cognitive impairment—either personally or within their family circle.
who has experienced serious heart problems. Ontarians need to hear more about their rehabilitation and complex continuing care hospitals so they can influence decisions about the future of this sector. As representatives of this hospital sector in the Toronto area, we need to communicate the benefits of our specialized care, and shine the spotlight on our remarkable research discoveries that are leading to new and innovative treatments and improved outcomes. The awareness and attitudes survey findings will inform our hospitals’ individual and collective efforts to expand our conversations with the public who need, or may one day need our services to restore or improve their independence and enhance their quality of life. We look forward to sharing with our communities the compelling stories of our rehabilitation and complex continuing care hospitals, particularly through the personal experiences of people whose lives we have helped to rebuild. ——————————————————————————————— The GTA Rehabilitation and Complex Continuing Care Hospitals Awareness and Attitude Study involved telephone interviews with 600 Ontarians and an indepth online survey with 1,870 people. The study has a margin of error of +/-2.27%, 19 times out of 20. TORONTO
BETTER LIVING through The innovative use of technology can enable people with disabilities, chronic disease and those who are growing older to live independently, work productively and enjoy leisure activities. “Even tiny, incremental improvements in assistive technology can have a phenomenal impact on the ability to enjoy a full and active life,” says John Shepherd, a former Toronto Rehab patient with quadriplegia from a spinal cord injury sustained in a 2003 car crash. “My belief is that when
BELT that GIVES DIRECTIONS
CELL PHONE helps REMEMBER NAMES
A belt worn around a person’s waist that gently vibrates against their stomach, back, and left and right sides to indicate directions when walking is being tested as a way finder for people with early Alzheimer’s disease or other forms of dementia. Using Bluetooth technology, the belt is uploaded with map landmarks regarding the wearer’s desired destination. The belt determines the location of the wearer, the direction they are moving and their speed through an integrated system of GPS (global positioning system), a compass and an accelerometer, which measures acceleration forces. The wearer is then directed to their destination through the vibration cues generated by four tiny motors in the belt that indicate the directions of forward, backward, left and right. “Our hypothesis is that with the belt, people with dementia will perform just as well as anybody in terms of finding their way,” says Lawrence Grierson, a postdoctoral fellow and member of the Toronto Rehab, University of Waterloo and University of Toronto team now testing the unique device with funding support from the Alzheimer Society.
Studies show that the inability to recall names causes the most concern among seniors with memory problems. Can a cell phone be used to help seniors remember people’s names and feel more socially connected? That’s the premise of a joint study under way by researchers at the University of Toronto computer science department, Sunnybrook Health Sciences Centre and Toronto Rehab. The team developed software called Friend Forecaster, which allows users to enter into a database the names, key information and geographic locations for individuals they would like to remember. When the software is activated on a cell phone, the user can make requests such as “doctor’s office.” Using GPS, the user’s location is identified; based on user location, their request and other information, the intuitive software suggests the names of people the user may be about to visit. “We’ve been getting good feedback to date. We’re very optimistic,” says Kent Fenwick, a master’s student in computer science and a member of the research team that is testing the system with various populations.
TECHNOLOGY the wildest dreams of researchers intersect with the deepest needs of consumers, that is when revolutionary creativity takes place.” Real need. Real science. Real solutions. These are the hallmarks of Toronto Rehab’s research enterprise and of the following four examples of how collaborative research teams are exploring ways that technology can help improve the lives of people with disabilities.
HIGH TECH WAYS to MANAGE BLOOD SUGAR
ROBOTIC ARM helps DELIVER THERAPY
By 2010, three million Canadians are expected to have type 2 diabetes at a cost of $15.6-billion a year to the health care system. Approximately 80% of people with diabetes will die as a result of heart disease or stroke. Faced with these staggering statistics, Dr. Paul Oh, Medical Director of Toronto Rehab’s cardiac rehabilitation and secondary prevention program, is collaborating with researchers from Wilfrid Laurier University on a study to obtain detailed information about the factors that influence blood sugar control in people with type 2 diabetes. Approximately 60 diabetics with no evidence of cardiovascular disease wore a series of monitors and sensors—including a GPS and a continuous glucose monitoring system—to track where they went, how fast they were moving, what activities they were doing, and how their bodies were responding in terms of heart rate and blood glucose levels. Patients also kept a diary of their food and medication intake. A detailed analysis of the data is being conducted to provide a better understanding of how a person’s behaviour affects blood sugar control. Dr. Oh hopes the study will lead to the development of a monitoring and alerting system, using everyday technology such as cell phones or Blackberries, to help people better manage their blood sugar levels.
A robotic arm has been invented to help patients who have had a stroke regain their upper body strength in the hope that they can “return to their homes and their daily lives more quickly than ever before,” according to Dr. Alex Mihailidis, a Toronto Rehab scientist who developed the device in partnership with Quanser Inc. Clinical trials with Toronto Rehab patients are being planned. The robot looks deceptively simple: a metal arm with a ball on top that patients slide back and forth in a reaching motion. Traditional therapy involves extensive practice oneon-one with a therapist who guides a patient through repetitive exercises. Using the robotic arm, patients do the same exercises while playing computer video games that give them targets to reach—like chasing a rabbit with a net or guiding a ball through a maze. While engaging the mind as well as the body, the games keep boredom at bay as the motion is repeated. Therapists can oversee four or five patients at a time—a cost-effective way to intensify therapy. The complexity of the robotic arm is in its artificial intelligence. Sensors detect if people are performing tasks correctly and how well they are progressing over time. The robot adjusts accordingly, increasing or decreasing the level of intensity. Eventually, it will be possible for patients to use the device at home and electronically transmit data from their exercise sessions to a therapist. TORONTO
Exercise: an integral part of Mike Langevin’s ongoing rehab
Missing Mike Brain injury takes its toll on a husband, father, firefighter and friend
It’s hard for Janet Langevin to admit— her eyes brimming with tears—that she misses her husband Mike. Even as he reappears in the diningroom carrying a box of tissues that he slides onto the table next to her, Janet acknowledges the changes in the man she married 14 years ago—the firefighter; father to their now 10-year-old son Trent; the gentle husband who always took care of the little things in life, such as making sure Janet’s snow tires were on her car before the first snowstorm hit. There is a moment when an onlooker can see the couple reconnect: in the quiet gesture of bringing her the tissues, Janet gets a glimpse of the Mike she knew before a ruptured brain aneurysm—and a resulting brain injury and left-side paralysis—turned their world upside down. “I’m so grateful that Mike’s alive,” says Janet, “but now our life is what it is…and it isn’t what it used to be.” It’s been almost two years since the day in April of 2007 when Mike’s aneurysm changed the lives of the Langevin family. In that time, Mike, now 45, has undergone a craniotomy (removal of a bone flap of his skull), and a sophisticated procedure called coiling to have his aneurysm repaired. He spent several weeks in acute care hospital followed by six weeks of intensive rehabilitation at Toronto Rehab’s acquired brain injury service—a place Janet refers to as “one of our God-sends.” For months after discharge from Toronto Rehab, Mike continued therapy on weekdays at a day hospital in his community—with firefighter colleagues taking turns driving him to and from the hospital. Now Mike goes for therapy once a week with a private health care provider. Mike is walking again, although his overall strength and stamina, while improved, have not returned to their former levels. He is still weak on the left side of his body; his left arm has not fully recovered and he lacks fine motor skills in his left hand. Even more frustrating are the
invisible disabilities caused by Mike’s brain injury. “Brain injury is not like breaking an arm, where you know it will be healed in a few weeks or months,” says Janet. “This is the unknown.” “I miss my independence,” adds Mike. “Brain injury is a disability. Sometimes you feel your brain is almost separate from your body… looking down…going, ‘Okay Mike, get moving. You’ve got stuff to do.’” Assessments have determined that Mike’s higher level or executive functioning has been affected. While his verbal memory is very good, his visual memory is lacking. Although he can follow a conversation or the story of a movie on TV, he becomes restless and will get up and walk away periodically. He can attend social functions for a short time but has trouble coping when noise levels are high or there are multiple conversations. Typical of people with brain injury, Mike has problems initiating activity, he lacks mental stamina and concentration, and he has problems getting motivated. “I tend to nap a lot if left alone during the day,” says Mike. “We had to find out if Mike was choosing to be on the couch and watching TV,” explains Janet. “What we’ve discovered is that he’ll do anything you ask—he’s
that helps him to get a cognitive workout and the family is hoping to increase Mike’s therapy and other scheduled activities to keep his brain active and engaged. Janet hopes that with ongoing stimulation, Mike’s physical and cognitive recovery will continue. She looks forward to the day when she “feels more like a wife again and less like a caregiver.” She also hopes her husband will recover to the point where he can return to modified work that will help expand his world outside of home Chess provides a cognitive workout for Mike. and therapy—fuelling Mike with experiences to not being combative. He just needs to share with his wife during the couple’s be scheduled and prompted.” evening conversations she now misses The Langevins are learning all they so much. can about brain injury in order to Janet sees small improvements that help Mike’s continued recovery. Mike give her hope—such as when Mike is working with a trainer to build up remembers to take out the garbage his strength. He has a treadmill in the on a Tuesday night or when he takes basement to help him keep active. the initiative to bake a ham for supper He has taken on the responsibility without being asked. of getting Trent organized in the For Mike, having a brain injury has morning, which includes preparing taught him “the importance and true his breakfast, packing his lunch and healing power of family and friends. walking him part way to school. Mike All the science and technology is has also started to cook again— fabulous and did save my life. But you something he enjoyed doing before need the drive to keep going every his injury. day. That’s my son and wife,” he says. He has special computer software “They keep me going.”
Mike with his wife Janet, son Trent, and the family dog Gizmo.
Research offers hope for recovery from brain injury
Dr. Robin Green
A landmark group of studies led by a Toronto Rehab scientist has shed new light on the challenges faced by people following traumatic brain injury (TBI)—including soldiers in Afghanistan and Iraq—and the types of treatments and interventions that could enhance their recovery. The prestigious journal Archives of Physical Medicine and Rehabilitation devoted its entire annual themed edition, published in December 2008, to 10 papers by Dr. Robin Green and colleagues in her Cognitive Neurorehabilitation Sciences lab. “This series of articles is of the highest importance and is likely to have far-reaching consequences for the lives of people with TBI and their families throughout the world,” says Dr. Ian H. Robertson, of the Institute of Neuroscience, Trinity 8
College, Dublin, in his journal commentary. A leading cause of death and disability, TBI can have devastating effects on a person’s ability to think and learn, and on the stability of mood and personality, among other problems. It can affect a person’s independence, family and work life, and the ability to participate fully in the community. “There are very concrete clinical implications to all the research,” says Dr. Green, a clinical neuropsychologist and leader of the social and cognitive sciences field of the graduate department of rehabilitation sciences at the University of Toronto. For example, three of the studies counter the assumption that people with brain injuries maintain their recovery in the long term. While some people retain their gains, “others aren’t holding on to their initial recovery, and there is a dropoff in brain and cognitive functioning,” explains Dr. Green. “All of our therapies and long-term planning are geared around people maintaining their recovery, and these results suggest that we need to re-think this.” While the knowledge that not all recovery is maintained may seem like a setback, Dr. Green believes
These images of a brain, taken five months (left) initial damage getting worse.
that the information is invaluable. “If we know that people are declining and why, then we can design treatments to avert decline and enhance people’s functioning.” Complicating the picture is the possibility that different parts of the brain may be competing with one another during recovery. “There’s only finite intact brain space to support recovery,” Dr. Green says. “The more cognitive recovery there is, the less motor recovery there may be, and vice versa.” “The upshot of all of these findings is that you’ve probably got to keep your brain highly stimulated in the short and long term after
“The upshot of all of these findings is that you’ve probably got to keep your brain highly stimulated in the short and long term after brain injury.”
brain injury,” says Dr. Green. “This means doing exactly the opposite of what many people feel like doing, which is withdrawing.” At Toronto Rehab, these findings are already having an impact in the clinic, where patients will receive “extra stimulation” in a study Dr. Green is leading in which therapy hours are doubled. This intensification will be studied, in part, to see if benefits are permanent or whether stimulation must be
and 2.5 years (right) after injury, show the
continued for the benefits to be retained. Another valuable finding from the studies is the identification of specific prognostic indicators. “Patients and families always want to know if the injured person is going to get better,” says Dr. Green. The research team identified a number of early indicators for positive long-term outcomes— including preserved memory for “organized, verbal information, which enables us to recall a conversation or story.” Military personnel who are sustaining brain injuries in Afghanistan and Iraq are among those who stand to benefit from the research findings, according to Dr. Green. For example, conventional diagnostic approaches are inadequate for the milder, yet still debilitating, brain injuries of the kind many soldiers are sustaining. “We’re designing a tool for identifying milder brain injuries. We need it for the general public but soldiers are also in dire need of it because they sustain mild brain injuries that are not diagnosed, and they go straight back to their highly
risky activities. So diagnosis is very important.” Another research finding of value to military personnel and the public alike is the use of cognitive behaviour therapy delivered by telephone for people experiencing emotional distress after brain injury. “We adapted this therapy for people with brain injury and we found it had incredible benefits,” Dr. Green reports. “This is important because many military personnel sustain brain injuries and post-traumatic stress disorder. Cognitive behaviour therapy works for both.” Delivering therapy by phone reduces time and travel costs, and makes it more accessible to people with mobility challenges. Other study findings focus on mechanisms of recovery following brain injury, new diagnostic and treatment approaches, and the clinical and economic consequences of sustaining a TBI along with a spinal cord injury. “The ultimate goal is to improve people’s functioning in the world,” says Dr. Green. “Some of the interventions coming from our research are going to do just that.”
Sharpen your brain
Here are some activities researchers believe can help to improve your brain power—whether or not you’ve had a brain injury:
Memorize something each day
—a song, a poem, even a grocery list. Choose material that is useful, interests you and is fun!
3 Meditate 3 Keep socializing
to improve attention and concentration, and filter out distraction. as you get older; it may help to maintain good mental functioning. TORONTO
news Large renovation and expansion project begins
From left: Tom MacMillan, Vice-Chair, Toronto Rehab Foundation Capital Campaign Cabinet; Sheila Hicks, President, Toronto Rehab Foundation; Robert McDonald, President, Aecon Buildings; José Costa-Valasquez, former patient; Emile DuHamel, former patient; David Caplan, Minister of Health and Long-Term Care; Geoff Fernie, VP Research; Mark Rochon, President and CEO; and David Bragg, Chair, Toronto Rehab Board of Directors.
In December, the Hon. David Caplan, Ontario Minister of Health and LongTerm Care, joined Toronto Rehab board members, staff, patients and volunteers to celebrate the official start of construction of the multimillion dollar expansion and renovation of the hospital’s University Centre. The new facilities are designed specifically for adults undergoing rehabilitation for serious injury and illness including stroke, brain injury, multiple trauma and cancer. The expansion will also house the new state-of-the-art iDAPT (Intelligent Design for Adaptation, Participation and Technology) research facility—one of the most advanced rehabilitation research facilities in the world. When complete in 2011, the total investment in rehabilitation care and research at University Centre is expected to exceed $180million—one of the largest investments in rehabilitation in Canada. To see how construction is coming along, visit www.torontorehab.com
Toronto Rehab’s Research Day 2008
The Honourable David C. Onley, Lieutenant Governor of Ontario, meets presenters and views posters at Toronto Rehab Research Day 2008.
From new treatments to better assistive devices, Toronto Rehab’s 4th Annual Research Day showcased a remarkable range of research aimed at improving the lives of people affected by disability and aging. The November event featured “Minute Madness” presentations in which presenters had only one minute to convey the importance of their work. Scientists, students and postdoctoral fellows described advances that are helping to maximize recovery so people can lead full, productive and independent lives. The audience of more than 200 also heard how Toronto Rehab research is assisting caregivers and helping to prevent disability in the first place.
Public session on chronic pain Plan to attend Toronto Rehab’s public education session, Coping with Chronic Pain: Tips to help you manage pain more effectively, on Thursday, March 26, 2009 at the Chestnut Conference Centre, 89 Chestnut Street, Toronto. The free session—a part of the hospital’s Living With Living Well series—will be held from 6 to 8:30 p.m. More information is available at www.torontorehab.com/ livingwithlivingwell
Kudos to Toronto Rehab staff Congratulations to the following Toronto Rehab staff for their recent awards and accomplishments: Karen Brunton, physiotherapy clinical educator, received the Exceptional Practitioner Achievement Award at the University of Toronto Department of Physical Therapy Awards ceremony in January. In addition, more than 20 members of the hospital’s physiotherapy team received recognition awards in a variety of categories. Bravo! to all. Toronto Rehab’s education team received two recent HealthForce Ontario funding awards totaling over $800,000. The awards will further the development of interprofessional education (IPE) and collaboration—one a team project led by the office of IPE at the University of Toronto and the other a partnership between Toronto Rehab and West Park Healthcare. Congratulations to Toronto Rehab’s Lynne Sinclair, Mandy Lowe, Julia Kim, Vidhya Sivanantham, Peggie Gairy and Aleks Walczak.
Cardiac rehab launches alumni support program Heart Health for Life presented by Scotiabank, a support program that encourages cardiac rehab graduates to maintain a life-long commitment to their heart health after they leave their formal rehabilitation program, has been launched by Toronto Rehab. The program offers an expanded education, online resources and peer support services dedicated to the heart health needs of graduates and their families. Heart Health for Life was made possible thanks to a $300,000 gift from Scotiabank. For more information about the program, please visit the cardiac rehab alumni section at www.torontorehab.com or call the Heart Health for Life project leader at 416-597-3422, ext. 5271.
Cardiac walk a success! The 6th annual On Track to Cardiac Recovery fundraising walk saw 265 current and former patients, their families and friends, Toronto Rehab staff and volunteers take to the state-of-theart indoor track at Rumsey Centre in February, raising close to $85,000 for cardiac research. Since 2004, the walk has raised close to $500,000 to support cardiac research. Special thanks to our presenting sponsor, The Dominion; gold sponsors, Deloitte and James B. Archer-Shee and Mary C. Matthews; silver sponsors, Harlequin, ICEBERG Water, Subway, and Thomas, Large and Singer; and our bronze sponsors, Investors Group and Running Free. The Toronto Rehab Foundation is also grateful to the cardiac rehab program staff and the volunteer committee chaired by Jim Chestnutt.
Spinal cord injury resource centre opens
New program treats complex trauma injuries Toronto Rehab recently launched its new complex injury outpatient rehab program—filling a health system gap for comprehensive, coordinated and cost-effective outpatient rehabilitation services for those with complex trauma injuries. A team of rehabilitation professionals work collaboratively to provide evidence-based services for people with multiple fractures, moderate to severe acquired brain injuries or multiple-system injuries sustained as the result of a motor vehicle collision or work-related injury. Services are covered by third party insurance. For more information, contact referral coordinator, Josie Tome, at 416-597-3422, ext. 3486.
Toronto Rehab has achieved another milestone in patient and family education by opening an information and resource centre for people living with the effects of spinal cord injury. “The centre is a one-stop-shop for basic and specialized information and knowledge exchange,” says Dr. Anthony Burns, Medical Director of the spinal cord rehabilitation program. It houses a growing collection of books, DVDs and videos about key topics related to living with spinal cord injury, and two fully accessible computers. The centre was developed in partnership with the Canadian Paraplegic Association Ontario. Located on the main floor of the hospital’s Lyndhurst Centre, it is currently staffed weekdays from 9 a.m. to 5 p.m., with expanded hours planned. TORONTO
Depression and disability Is blue your primary colour? When he goes out into the community, Ryan Muirhead likens himself to “a clown who has a smile painted on his face but underneath is often sad.” The 24-year-old has been battling bouts of clinical depression since a single-car crash during spring break in 2005 left his back broken in 10 places and his face smashed so severely, the plastic surgeon said it was easier to identify the few bones that remained intact versus the majority with multiple fractures. “When it first happened, I ruled out a life. I didn’t see a future at all,” says Ryan, who has quadriplegia and uses an electric wheelchair to move about his accessible home in the City of Kawartha Lakes, Ontario. While in intensive care, “I begged and pleaded with my Grandma, my Mom and my girlfriend at the time to let me go…to let me die. Sometimes even now, it’s still tough because everything has changed completely.” For four years, Ryan has been in and out of hospital—for the first 11 months, he was an inpatient at Sunnybrook Health Sciences Centre and at Toronto Rehab’s spinal cord rehabilitation program at Lyndhurst Centre. He has been hospitalized numerous times with medical complications. His injuries caused Ryan to lose much of his independence. His studies to become a civil engineer technician came to an abrupt halt, and eventually he and his girlfriend broke up. Having a life partner is very important to Ryan but he worries that “no one will want me because I’m damaged.” Although he is excited about applying to study multimedia design at college this fall, negative thoughts frequently take over. “When I’m depressed, it’s like beating myself down. I sometimes think, what is the point? If I even
get into school, I’ll probably fail or if I do graduate, I won’t get a job because no one will hire me.” By reaching out for help and taking some positive action on his own, Ryan is learning to tackle his depression. He is on antidepressant medication and in counselling with Dr. Keith Walker, a psychologist at Toronto Rehab’s spinal cord rehabilitation program. Ryan has also formed his own charity called Back on the Move, which educates high school students about risk-taking behaviour and fundraises to assist others with disabilities. “It’s been a bit of a rollercoaster ride. There’s definitely been times when it gets better,” says Ryan. “Right now, I’m sort of medium…not up but not down.” Clinical depression is a mood disorder that affects between 5% and 11% of the general population. Studies show that it may be two to 10 times more common among individuals with disabilities or chronic illness. Not everyone with a disability becomes depressed and even if they do, their depression may not be related to their disability. However, people with disabilities face unique challenges that put them at increased risk for depression. Many people who become disabled due to illness or catastrophic injury, such as spinal cord injury, go through a normal “process of grieving in reaction and proportionate to the magnitude of their losses,” explains Dr. Walker. “They adjust to their circumstances, their mood gradually improves and they feel generally better about their lives.” But for those who experience unrelenting symptoms of clinical depression for more than two weeks (see sidebar), treatment is available. “For a lot of these people, the psychological disorders are more disabling than the physical injuries themselves,” says Dr. Walker. “So many times, patients are much more disabled when they are depressed,” agrees Dr. Abe Snaiderman, a neuropsychiatrist in Toronto Rehab’s neuro rehabilitation program. “Once we treat the depression, the disability does not disappear but at least it improves and can better be dealt with—the patients can cope better without depression.” Dr. Snaiderman works with patients who have disability caused by stroke, brain injury and progressive diseases such as multiple sclerosis, Parkinson’s disease and other problems. Among these groups, depression is very common. “Depression is as much an illness of the body as heart disease, gait, visual or strength problems, and it can be treated. It’s important that patients talk about their feelings and what kind of changes they’ve experienced. If you are feeling sad, irritable or angry, if your family or loved ones are telling you that you’re
not the same, seek help.” Depression is the most treatable of mental illnesses, according to the Canadian Mental Health Association. Most people who suffer from depression are helped by the treatment they get, which can include medication; psychotherapy (talk therapy), including cognitive behaviour therapy; or a combination of both. Ryan Muirhea d before a car crash left Support from selfhim with quad riplegia. help groups, friends and families can also make a big difference. “If people are feeling depressed, they need to know that they’re not alone and there are supports available to them,” says Ann Spence, a social worker at Toronto Rehab’s Bickle Centre for Complex Continuing Care. Patients at the centre often experience depression because they have several serious diagnoses and their medical complexity means they need to live in the hospital setting at this time. “I think for a lot of people, increased dependency can lead to a feeling of hopelessness and depression,” says Ann. “As long as we support them and listen to what they are saying, I think we can begin to forge a relationship and dispel some of the negative thoughts they may have about being here, about their illnesses, their abilities or disabilities.”
“Once we treat the depression, the disability does not disappear but at least it improves and can better be dealt with—the patients can cope better without depression.”
Symptoms of depression can include: • • • • • • • • • • •
Feelings of sadness, anxiety, hopelessness or emptiness Loss of interest in activities that used to be enjoyable Sleep problems Changes in appetite with weight loss or gain Feelings of increased irritability, restlessness or frustration Decreased energy Difficulties with concentration, memory, decision making Feelings of excessive guilt, worthlessness or helplessness Decreased interest in interacting with others Crying more often than usual Thoughts of death or suicide TORONTO
Society’s awareness and understanding of depression has gone a long way to reducing the stigma associated with the disease. “People realize it has nothing to do with personal strength or moral character,” says Dr. Walker. “More and more, it’s recognized as an illness that is no different than any other medical illness.” Recent research shows a strong link between depression and heart disease. “Thirty to 40% of people entering cardiac rehabilitation also have depression,” says Dr. Paul Oh, Medical Director of Toronto Rehab’s cardiac rehabilitation and secondary Ryan with his mother, Julie Hayes
Depression and disability
What you can do Ask for help. Talk to competent mental health professionals, members of your health care team, teachers, peers, family and friends. Discussing problems can help clarify issues and identify creative solutions.
Talk to someone with a similar disability
or seek out support groups for individuals with specific disabilities.
Set a plan or schedule of activities for
every day and follow it, even if you have to use a checklist.
Create a comfortable and safe environment. Be scrupulous about your
personal care routines and about taking your prescribed medication. Keep your essential equipment—such as wheelchair, braces, mattress—in good shape.
Avoid using alcohol or street drugs
to treat depression. When combined with some medications, alcohol can make depression much worse.
Exercise. Increasing physical activity—even if prevention program. “Depression probably doubles the risk of having a future heart problem compared to those who don’t have depression.” Dr. Oh and his colleagues are participating in a series of unique studies with Dr. Krista Lanctôt of Sunnybrook Health Sciences Centre. The studies focus on how to better recognize cardiac rehab patients with depression, understand the physical and psychological issues they face, and then develop ways to “intervene smartly to help them recover as fully as possible,” says Dr. Oh. “Then they can engage in their rehab and realize the maximum health benefits.” For Ryan Muirhead, working to alleviate depression has given him hope for his future. “The medication and talking with Dr. Walker have helped a lot. I have found it easy to talk to counsellors and physios, and say stuff that I still won’t say even to my family. “Someone told me that you can get out there and do something with your life—try to make a difference, try to become someone that you want to be. That’s helped me. I try and pass that on to other people, not just those with disabilities. It works for anyone who is depressed.” 14
you have physical limitations—can be one of the most effective ways to combat depression.
Find stress management techniques that work for you: relaxing, meditation, praying, watching funny movies, doing crafts, keeping a journal, or any other activities that make you feel less stressed, can make you less vulnerable to depression.
Volunteering can be a meaningful and rewarding experience.
Depression can lead to urgent situations where suicidal thoughts become life-threatening. Seek help immediately. See a physician, go to a hospital emergency department or call your local distress centre (in Toronto: 416-408-4357). If necessary, call 911 (Emergency Medical Services).
Sources: Coping with Depression: Healthy Living after Spinal Cord Injury, Toronto Rehab, 2004. Depression and Disability: A Practical Guide by Karla Thompson, PhD, North Carolina Office on Disability and Health, 2002.
Jack Heinemann, a spinal cord rehab patient, and Charlene Alton, therapeutic recreationist, look forward to a dedicated room for leisure activities such as painting.
Making ROOM for discovery Recreation’s purpose is not to kill time, but to make life Not to keep a person occupied, but to keep them refreshed Not to offer an escape from life, but to provide a discovery of life.
gardening, woodworking and much more. The room will also house leisure education presentations and demonstrations by special guests. Therapeutic recreation allows patients to practice the skills Although the author is unknown, the therapeutic they have learned in rehab while socializing with one another recreationists who work in Toronto Rehab’s spinal cord in a relaxed atmosphere. Studies show that therapeutic rehabilitation program live by these words. And this recreation increases self-esteem, decreases depression, enthusiastic team of health focuses on a person’s abilities and “With this new room, patients professionals may find a permanent promotes community integration. home to display this verse by Through the Toronto Rehab will have the opportunity to next winter when The Dominion Foundation, funding was secured for re-establish former areas of leisure construction of the therapeutic recreation Therapeutic Recreation Treatment Room opens its doors to patients at room from The Dominion, and the costs and recreation interest, develop the hospital’s Lyndhurst Centre. The of equipment and supplies are being new leisure skills and experiment donated by the Rick Hansen Foundation. room will provide a dedicated space for therapeutic recreation activities “At The Dominion, we recognize with what they are able to do from for inpatients and outpatients who the importance of incorporating daily a leisure perspective.” have sustained spinal cord injuries living skills and leisure activities into the due to trauma or illness. rehabilitation process,” says George L. “With this new room, patients will have the opportunity Cooke, President and CEO. “We believe that after a spinal to re-establish former areas of leisure and recreation interest, cord injury, every patient deserves the opportunity to return develop new leisure skills and experiment with what they are to the highest possible quality of life. I am confident that the able to do from a leisure perspective,” says Charlene Alton, a therapeutic recreation room will bring positive results to all therapeutic recreationist. patients who have the opportunity to experience it.” While therapeutic recreation has provided active forms The Spinal Cord Injury Solutions Network, Toronto, of sports and outdoor pursuits through adaptive sports on behalf of the Rick Hansen Foundation adds: “We hope nights and the cottage program, for example, the staff has that the resources we have dedicated to your project will been anxious to offer patients a more well-rounded service, improve your curriculum, extend your rehab hours through including a range of passive leisure pursuits. recreation, and create more opportunities for your patients The Dominion Therapeutic Recreation Treatment Room to become active members of their communities, with an will provide an accessible space for painting, ceramics, increased quality of life and awareness of the benefits of active general arts and crafts, sewing, use of computers, indoor participation. We look forward to seeing the results!” TORONTO
Post script When Una and Ken Villiers joined Toronto Rehab’s cardiac rehabilitation and secondary
prevention program, Una agreed to keep a journal and share her experiences with Toronto Rehab magazine readers throughout 2007. “I dislike exercise and after my heart attack, I’m filled with fear and trepidation about exerting myself,” Una admitted in her first article. Despite her fears, she embraced the program and told her story in two issues of the magazine. But that fall, events caused the couple to miss the final part of their cardiac rehab program. Una developed excruciating back pain that lasted for months—eventually she was diagnosed with a herniated disk. A family member became ill, Una’s best friend died and another friend was diagnosed with cancer. Ken pulled his Achilles tendon playing tennis and required months of therapy. Slowly they recuperated and the couple is back to their walking routine. “The wisdom of what we learned in rehab is hopefully at work—from the exercise and nutrition to the support aspects of the program. Our gratitude to Dr. Paul Oh, Marilyn Pieper and the cardiac rehab team for their dedication, compassion and commitment,” says Una. “I think cardiac rehab is a necessity for people who’ve had heart problems. I’m no longer afraid to exert myself and I don’t think of myself as a frail little violet anymore.” The couple cherishes the time they spend with granddaughters Hannah, 7, and Sarah, 3. “These years with the girls have been a blessing,” Una smiles, “and I want to make sure we have more of them.”
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