DECEMBER DECEMBER 2011 Volume 18 Issue 4 COPING WITH. Breaking Down the Wall pg7. A How-to Guide pg17. A Huge Success! pg25

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1 DECEMBER 2011 DECEMBER 2011 Volume 18 Issue 4 SURVIVOR STORIES: Breaking Down the Wall pg7 COPING WITH Conflict: A How-to Guide pg Conference: A Huge Success! pg25 1

2 2 OBIA REVIEW

3 DECEMBER 2011 BOARD OF DIRECTORS President Donna Thomson Vice-President Barbara Claiman Vice-President Tom Dow Treasurer Taryn Abate Corporate Secretary Nancy Baron-Blake Directors Dr. Sheila Bennett Brian Bird Gayle Dawson Jamie Fairles Melanie Gardin Maria Hundeck Dr. Charles Leclerc Loreigh Mitges Nancy Nicholson Norm Sinclair Lucie Sirois Debby Vigoda OBIA STAFF Executive Director Ruth Wilcock...#238 Associate Director Tammy Dumas...#240 Support Services Specialists Dianne Radunsky...#229 Carla Thoms...#227 Admin. Services Coordinator Terry Wilcox...#234 Training & Admin. Assistant Diane Dakiv...#231 Training & Resource Navigator Debbie Spaulding...#224 Financial Controller Gail Coupland...#230 OBIA Review Editor Jennifer Norquay Inside this issue: 7 SURVIVOR STORIES: Terrance Brown, Breaking Down the Wall 2011 CONFERENCE: A Huge Success! COPING WITH CONflICT: A How-to Guide Families or partners are usually ecstatic when their loved one return from hospital. But the cognitive after-effects often create great strains that families or relationships may eventually crumble under. Also Inside: Ruth s Desk... 4 Ways to Overcome Across the Province Provincial Conference Highlights In Memory Friends of OBIA Conference Calendar Community Associations Provincial Associations Training VISIT Copyright 2011, PUBLICATIONS MAIL AGREEMENT NO RETURN UNDELIVERABLE CANADIAN ADDRESSES TO: Ontario Brain Injury Association, PO Box 2338 St. Catharines, ON L2R 7R9 Ph: or Fax: , Registered as a Canadian Charitable Organization Reg. # RR0001 3

4 OBIA REVIEW AWARENEss 4 Approximately onethird of traumatic brain injury survivors have a history of substance abuse prior to their injury. Furthermore, twenty percent of people who do not have a substance abuse problem become vulnerable to substance abuse after a brain injury. By Ruth Wilcock, Executive Director, OBIA RUTH S DESK Brain Injury and Addiction For many, the cool autumn weather is the prelude to one of the most marvellous times of the year the holiday season. People become preoccupied with making to do lists, coordinating and attending various holiday parties, and arranging family dinners. This is all done in anticipation of sharing the holiday season with those who mean the most to us. Unfortunately, for others, the hustle and bustle of the holidays do not evoke sentiments of warmth and connectedness but rather triggers feelings of pain, loss and loneliness, leaving them grappling with how they are going to cope. During our celebrations we must also carry these people in our hearts. Some people cope by simply withdrawing and isolating; others cope by finding comfort and relief in various ways, including the use of substances. Having been asked to do a number of presentations on brain injury and addiction over the last few months, the topic has been strongly on my mind. I have great empathy for those who struggle with addictions. Prior to working in the brain injury field, I was the Executive Director of a long term residential drug and alcohol rehabilitation facility. In retrospect, I worked with a number of clients who had an addiction issue and had also sustained a brain injury. Addiction in and of itself is a very complicated issue. As many know, brain injury is also very complex with many variables. Therefore, a person who has sustained a brain injury and is also struggling with addiction, has a number of challenges that he or she faces and these can sometimes feel insurmountable. Studies have shown that there is a strong correlation between substance abuse with survivors of brain injury. Approximately one-third of traumatic brain injury survivors have a history of substance abuse prior to their injury. Furthermore, twenty percent of people who do not have a substance abuse problem become vulnerable to substance abuse after a brain injury. So, for some survivors of brain injury, substance abuse or addiction is an old problem carried forward and for others, it becomes a new challenge. Regardless of whether one has a brain injury or not, alcohol and drug habits are difficult to change. However, it is

5 DECEMBER 2011 important to note that there are increased challenges and risks for someone who has a brain injury and uses substances, including impeding recovery following a brain injury. Substance use can also exacerbate problems with balance, walking and talking, and decreases inhibitions. Furthermore, the use of alcohol or drugs can negatively interact with prescribed medications. There is also a significant increase in the risk of sustaining another brain injury. For more information on the Substance Use and Brain Injury Bridging Project you can go directly to From the board and staff of OBIA we wish you a safe and happy holiday season. When we are working with or are in relation to someone who has this dual diagnosis we must start at the place of compassion. Adjusting to life after brain injury can be stressful as survivors are coping with so many losses, including the loss of self. Other losses can include their job, their friends, their community and sometimes their family. Turning to substances is often an attempt by the survivor to somehow make themselves feel better. It becomes a way coping. There is no question that survivors of brain injury are a vulnerable population. So the question becomes what can one do to help someone who has a brain injury and is struggling with addiction? There are no quick and easy answers; sometimes we need to begin at the basics, such as educating individuals and their families about the risks and consequences of survivors using substances. It is also important to encourage the survivor to engage in other activities that do not centre on alcohol and or drugs. Some further interventions may include detoxification programs, residential treatment and twelve step programs. Another avenue of support is the Substance Use Brain Injury Building Project (SUBI) spearheaded by Dr. Carolyn Lemesky. We all know the holiday season can be a very challenging time for some. If you are a survivor or a family member of a survivor who is struggling with substance abuse please know that you are not alone. OBIA s support services department is available to offer you support and direction. Feel free to contact our support services department at or for help with this issue or any other challenges that you may be facing. 5

6 6 OBIA REVIEW

7 DECEMBER 2011 support SURVIVOR STORIES Terrance Brown - Breaking Down the Wall By Jen Norquay, Editor OBIA Review It was the end of October when Dianne Radunsky and I sat down with Terrance Brown to talk to him about his life after brain injury. Terrance is no stranger to OBIA, having been a regular caller on the Support Line for over 10 years. These are the highlights of Terrance s story. It was September 15, 1975 when ten year old Terrance was hit by a van while on his bike. He was thrown 150 feet, landing on his head. He was unconscious for eight weeks and in hospital for several months. He underwent a number of surgeries, including one to release intracranial pressure, which his young parents were told was not effective. He was released from hospital in spring of 1976 and sent home without having any rehabilitation. Terrance missed a whole year of school and when he returned to his grade five class with his head shaved, he was made fun of by his classmates. Academically, he was working at a C-D level and just barely got by. When he was old enough for high school, it was recommended that he go to General Brock High School in Burlington for vocational training. He took classes in chef training, baking, restaurant management, woodworking and printing. It was during this time that his parents split up and he went to live with his mother. In 1979, tragedy struck again when, at the age of fourteen, Terrance was involved in another accident. He was hit by a car, breaking both legs and his pelvis. Terrance spent numerous months in traction and a body cast, and still feels the physical effects of these injuries to this day. To combat the pain, he takes Cesamet (medicinal THC) and smokes doctor-prescribed marijuana. Following high school graduation, Terrance worked as a mechanic for a popular tire store and was subsequently fired for not taking out the garbage. He then went for six months of training to become a healthcare aid. One night, after his shift, Terrance got into a bar fight at the local pub. It was only following this incident that he was finally diagnosed as having a brain injury. Following his diagnosis, a local brain injury support group helped him apply for CPP and ODSP but by no means was this the end of his troubles. Navigating the ODSP system has proven to be very difficult and has understandably become yet another added stressor in Terrance s life. Terrance initially received funding for a special dietary allowance which was essential for his physical wellbeing. However, this allowance was taken away from Terrance when the legislation changed, leaving him scrabbling to try to eat properly on a now even further reduced income. Terrance is also frustrated with ODSP as they refuse to pay for his medical marijuana, even though it is doctor-prescribed and government approved. The reason for this is that there is no drug identification number (DIN) and therefore medical marijuana is not covered by provincial health care. The absence of a DIN number not only affects Terrance but also many others who are in the same situation. Terrance spends much of his time being an advocate for medical marijuana users and wants to try to fix what he sees as a major injustice. He is not shy in contacting anyone who he thinks will help him, from his MPP right up to the PM s office. However, in his advocacy he 7

8 OBIA REVIEW sometimes can be perceived as being disruptive. At times, when Terrance gets frustrated, his demeanor may change and his voice elevates. Therefore, those people who do not understand that this change is related to his brain injury have felt threatened and, on occasion, the police have been called. In 2010 it was suggested that Terrance go for an emergency psychiatric assessment. This assessment showed the changes in his behaviour was due to his brain injury and not a mental health issue. It was also noted that had his brain injury been diagnosed at the time of injury, services and rehabilitation would have been made available to him and his life would be much different than it is now. Prior to beginning our interview, Terrance brought out a copy of the last issue of the OBIA Review and pointed to the cover picture. On it was a picture of a person looking over a radiant field of flowers. He said that in his opinion, this represents Had his brain injury been diagnosed at the time of injury, services and rehabilitation would have been made available to him and his life would be much different than it is now. someone with a brain injury, but rather than a field of flowers, he sees a wall blocking their way. He recited the words from the song Hey You from Pink Floyd s album The Wall, which he said describes his difficulties following his brain injury. Hey you, out there beyond the wall, breaking bottles in the hall, can you help me? Hey you, don t tell me there s no hope at all, together we stand, divided we fall. He calls OBIA on a regular basis asking for help in getting legislation set that would help people with brain injury. He sees himself as a facilitator, not a survivor. He has many legitimate issues with what he sees as a situation where people with brain injury are taken advantage of and it is his hope to teach people how to live with a brain injury. Terrance shared his method of coping: breathe in, breathe out, live life to the fullest and most importantly, take one day at a time. Restore yourself. If you ve been seriously injured, Judith Hull & Associates can help. Our focus is on your needs there s no reason to go through a major trauma alone. Motor Vehicle Collisions Traumatic Brain Injuries Orthopaedic Injuries Spinal Cord Injuries Wrongful Death Claims CPP & Disability Claims Dangerous Premises Historic Sexual Abuse Product Liability Workplace Safety Insurance Benefits We do not represent insurance companies. Service, Integrity, Results. 2nd Floor, 620 Richmond Street London, Ontario, Canada N6A 5J9 When your future is at stake, call us at , or online at judithhull.com Judith Hull & Associates Professional Corporation 8

9 DECEMBER

10 OBIA REVIEW support Ways To Overcome by Annie Malipaard (Member of the Brain Injury Association of Chatham-Kent (BIACK)) I hope to encourage others who have been through an aquired brain injury. Brain injuries can be the result of a fall, a motor vehicle accident, a stroke, a heart attack or instances of trauma or lack of oxygen to the brain. And yet, people still don t wear proper protection and are too careless! In the early 70s to the early 90s I had three jobs. I worked at the Department of Defence, I was a RN and RPN, was a caregiver to my mom and I also did work as an administrative assistant for Thalidomide Association in London, ON. I ve had many surgeries since my injuries and will soon face the largest challenge of my life; doctors at Sunnybrook Hospital in Toronto are going to remove my tubes and colostomy bag so that my quality of life improves. I will finally be able to go swimming and play golf, which is my passion! I also enjoy volunteering and feel like a useful member of my community. I am still young at heart, you know! I returned home after working a night shift to the telephone ringing. I should have ignored it. It was the hospital calling me in for an all-day shift because someone else had called in sick. I had a shower and a cup of coffee before leaving for the hospital. When I tried to leave the house, my car refused to start, so I called a taxi. The driver was in a hurry and smashed into a London Transit bus that was parked in a bus bay. I still don t understand how he did not see it. I had my seatbelt on, but it did not hold me. I had so many injuries, I don t even want to tell you about all of them - suffice it to say that I went through the windshield. The cab driver was not injured. I sued for damages because I was no longer able to work. Then, in 2004, I ran into a cement truck and received my second brain injury. Prior to my injuries, I took care of a gentleman who was in a coma and looked after tracheotomy patients at Parkwood Hospital, so I know you can have your life taken away in seconds. I have so much support from the BIACK, the VON, Bayshore Home Health, OBIA, my friends and my family, as well as my friend Al, who had a brain injury himself, years ago. He was in a coma for six months and I helped care for him and his 2 year old son for a full year. I also have support through my church and my faith, as well as my dedicated brother and my cat, Millennium. We fought hard and it is not easy at all, but if you work hard, it can be done. I find post-traumatic stress the most difficult to deal with but I ve done my best to master ways of controlling it. 10

11 DECEMBER 2011 A single source for your clients home care and rehab needs People with serious injuries often need a variety of health care services attendant care and nursing for their daily needs and physiotherapy and other rehabilitative services to make the best possible recovery. Bayshore Home Health and Bayshore Therapy & Rehab, the newest addition to the trusted Bayshore brand of health care offerings, can provide professional services in both areas. Our caregivers and rehab professionals are supported by internal clinical experts and our National Care Team a convenient central contact point for workers compensation boards, insurers and government care programs, providing standardized reporting and timely service with a personal touch. To learn more, please call or visit Therapy & Rehab Better care for a better life We want to hear from you. Do you have a story of survival? Are you a caregiver to someone with ABI? Have you dedicated your life to helping those with brain injuries? To help spread the awareness of how brain injury impacts our lives, OBIA is launching a regular feature focused on sharing stories from our readership. The goal is simple: Share Inspire Support To share your stories with our readers, us at 11

12 OBIA REVIEW Education Playing Your Song: The Use of Music Therapy for Self-Expression with Individuals Who Have Experienced ABI Cheryl Jones MMT, NMT-F, MTA Self -expression is important. It allows us to describe how we feel and our thoughts about issues; it highlights our individuality and provides opportunity for release of emotions. The Importance of Self-Expression We all have the need to feel heard. Sharing who we are, or what we are going through, with another person, provides opportunity to receive support. Expression allows for another to respond with empathy, understanding and encouragement. Feeling heard is validating and can prevent feelings of isolation or loneliness. Self-expression is important for everyone and can be especially important for the individual who has experienced ABI. He or she may be developing a new sense of self, experiencing significant changes in ability, or adapting to adjustments in their role at home, work or school. Being able to express who they are and how they feel enables them to experience support and affirmation as they journey through these changes. Self-expression can help articulate their individuality and identify their sense of self. An individual may experience a range of emotions following ABI. Expressing these emotions provides release and is an important aspect of mental health. Although self-expression is important for the individual who has experienced ABI, the ABI itself may have resulted in impairment to self-expression. Possible challenges to self-expression following ABI include: word-finding problems, word pacing (delay of verbal response, stuttering or acceleration of words), oral motor issues (which can impact articulation and the ability to be understood), attention span (affecting the ability to stay on topic or follow a conversation), initiation and, depending on the location of the brain injury, the total loss of the ability to speak. Challenges in self-expression can lead to feelings of frustration, depression and loneliness. Why Music? Music has proven to be an effective tool in providing opportunity for selfexpression. Because of music s unique characteristics and its strong emotional qualities, it can be a powerful form of self-expression: both verbal and nonverbal. Musical elements such as melody, dynamics (range of soft and loud), harmonic qualities and tempo all serve as expressive tools. For an individual with speech related challenges, music can be an effective form of non-verbal expression. In addition to its expressive qualities, music is also an effective tool due to its neural stimulation. Research evidence demonstrates that music is processed within a number of locations in the brain. When music is used, it is a multi-site stimulation allowing for increased neural recruitment and creates potential for new neural networking. What is Music Therapy? Music therapy uses music to work towards non-musical goals. Goals are individually established for each client following an assessment, A music therapist is a qualified individual with a university degree in music therapy, has completed a 1000-hour internship, and has received accreditation from the Canadian Association for Music Therapy. This is indicated with the professional designation MTA. Examples of Music Therapy Techniques for Self-Expression 1. Improvised Instrumental Music During improvised instrumental music, a number of instruments, suited to the client s ability, are made available. A range of instruments also allows for a range of expressive qualities. The music therapist may accompany the client on a second instrument or the client may play solo. An improvisation may have a theme such as let s play about how school went today or may not have a theme and the music simply unfolds. Some individuals with speech related challenges enjoy the non-verbal aspects of musical expression and find it easier to flow in their expression when they are not dealing with finding the right word. Instrumental music can also serve as a cathartic release of emotion. Music creation can allow for a healthy outpouring of feelings and can serve as an appropriate release for negative emotion such as anger. During a music therapy session, a non-verbal client was demonstrating frustration due to challenges with her feeding-tube. When offered a large buffalo drum to express how she felt, she struck the drum loudly several times. This was followed with a smile, having released her frustration effectively and feeling that those present now understood just how frustrated she was. 12

13 DECEMBER Composition Composition allows for an individual to take the time to create the lyrics, to find the words, in order to express what they would like to convey. With the help of the music therapist, the client makes musical decisions such as the use of one chord vs another, melodic direction, harmonic quality, tempo, and dynamics. The completed song provides the message the client wishes to convey, plus the emotional qualities to reflect it. It also is a wonderful experience of empowerment, affirmation, and creativity. It is a concrete example of accomplishment and success. Following the completion of a song on a theme of personal significance an individual stated, Wow! I did not know I could do that! I have accomplished something and I loved being creative. Another individual, who was non-verbal signed to the music therapist, now they not only know my words, but they also know how I feel. For her, the use of sign language and technology allow her to state herself, but the addition of the emotional qualities of music to her message gave her increased personal satisfaction. 3. Sharing of Personally Significant Music The sharing of personally significant music with the music therapist can provide opportunity for an individual to express a theme or memory of importance. It can serve as an icebreaker or springboard for further exploration. 4. Singing Singing can provide opportunity for an individual to be verbally expressive while being supported by music s characteristics and neural stimulus. Singing personally significant music can celebrate individuality. An individual does not need to have a musical background in order to participate in music therapy. Music therapy techniques are determined based on the client s need, abilities and interests. Conclusion The need to be self-expressive and feel heard is experienced by us all. Because ABI may result in limitations to self-expression, it is particularly important to provide these individuals with expressive opportunities. Due to music s characteristics, emotional qualities and neural stimulus, music therapy can be an effective tool to use for self-expression, both verbal and non-verbal. In addition, it provides opportunity for empowerment and creativity, celebrating success and the individuality of the person. As one individual stated following an instrumental improvisation, It s wonderful to discover new things that I can do. Cheryl Jones MMT, NMT-F, MTA holds her Masters of Music Therapy from Wilfrid Laurier University. She has advanced training in Neurologic Music Therapy from the Bio-medical Research Centre at Colorado State University. Cheryl is a researcher for the Conrad Institute for Music Therapy Research. She is a fellow of the Robert F. Unkefer Academy of Neurologic Music Therapy, is a member of the Network of Neurologic Music Therapists, and of the International Society of Clinical Neuromusicology. She currently resides in Ottawa where she maintains a private practice, Con Brio Music Therapy. 13

14 14 OBIA REVIEW

15 DECEMBER 2011 Interested in adversing in the OBIA Review? Ad Space starting from $850 for one full year! Call Terry Wilcox in Admin. Services Coordinator #234 15

16 OBIA REVIEW Bartimaeus Rehabilitation Services Because Experience Matters Service Bartimaeus provides rehabilitation services to people who have experienced a severe trauma or brain injury due to a motor vehicle accident. For more information please visit our website at or call us at SINCE 1988 Knowledge Experience Choice 16

17 support Coping with Conflict DECEMBER 2011 Families or partners are usually ecstatic when their loved one returns from hospital. But the cognitive after-effects often create great strains that families or relationships may eventually crumble under. In many cases there is a gradual awareness that the person has undergone irrevocable changes. A formerly easy going person has developed a short fuse and a fiery temper. A husband who used to help around the house has to be constantly reminded to do the simplest tasks. A formerly diplomatic woman now speaks so bluntly that friends have drifted away and family members feel criticized and abused. A daughter who was always concerned about others now never takes others needs into consideration. Depending on the cognitive changes, a person who has acquired a brain injury may be labeled as lazy, irritable, selfcentered or rude. These misconceptions usually happen as people fail to realize there have been cognitive changes as a direct result of injury to the brain. It is usually much easier to pretend that the person is willfully choosing to act this way which can justify the anger and resentment that have built up. When There Is Little Or No Self Awareness One of the most difficult situations is where the family member has lost their capacity for self-awareness. This can be a frequent outcome, particularly in frontal lobe injuries. This is very hard on families as in extreme cases, no amount of reasoning or logic will make any difference. Their loved one may have lost all ability to analyze their own behaviour or speech. In these cases the family needs to develop a good understanding of why the cognitive changes have taken place to help them deal with any problems they cause. Realizing that the person can no longer act the way they once did can help develop patience and understanding. The next step is to develop strategies that will manage challenging behaviours that may arise. A fact sheet on challenging behaviours is available through the OBIA library. It can be incredibly difficult for families to calmly respond in a consistent way to challenging behaviours but having a good understanding of brain injury and useful strategies can go a long way to making a difficult situation bearable. When The Person Is Self Aware Self-awareness can be largely intact, particularly with milder injuries. Brain injury survivors will still face many of the same issues but with self-awareness comes the ability to learn strategies. Often family members may tell them that some of their actions or words are inappropriate, or appear to be rude, critical or self centred. It may take them some time to realize they need to relearn some social skills as their impaired selfawareness makes it difficult to see how they are impacting on others. Families may need to be patient sometimes their loved one may take months of this kind of gentle but firm feedback from family, friends, workmates and members of the public before they slowly realize they need to relearn some behaviours and communication styles. 17

18 18 OBIA REVIEW

19 DECEMBER 2011 The brain injury survivor may need to relearn many lost skills anger management, dealing with stress, how to be assertive instead of aggressive, how to solve problems and see things from other people s points of view. The family needs to work with the rehabilitation team to help their loved one learn new strategies, and provide feedback on their behaviour and communication. This can be a very difficult time. A family may be accused of being critical and vindictive when they give feedback on their loved one s angry outbursts. A person may continually blame others when they lose jobs or friends, as they take so long to see how their actions have caused this. But with a supportive family, the survivor has the opportunity to gradually develop their self-awareness again. Families Must Face Their Own Issues Families often have trouble letting go of the old person they used to know. There is a natural grieving process as a family comes to accept that their loved one s former personality has changed irrevocably. But sometimes f a m i l y members are unable to let go and will keep reminding their loved one of how they used to be. This can only make things worse for the survivor of the brain injury. They know only too well they have changed and forcing them to change back is an impossibility that can only lead to frustration. Families can also develop bitterness and anger over time, particularly if they have been facing challenging behaviours over many months. Even if their loved one is working as hard as possible to learn coping strategies, the family can become very resentful if all their support is met with criticism and bursts of rage. The strain can bring out negative behaviours in caregivers too. They may fail to respect their loved one s privacy or need to be as independent as possible. They may become overly controlling or critical, thinking that all the sacrifices they are making as caregivers entitle them to not respect the rights of their family member. Responses from the family that are based on anger will always make the situation worse. Getting Help The pressure on a family can develop to a point where a standoff occurs. The caregivers feel all their support over the months has not been appreciated. They may have tolerated angry outbursts or embarrassment in public and are not prepared to face any more. Conversely the survivor may feel the family doesn t realize this is the hardest thing that they have ever faced in their life, that despite slow progress they have been working on these problems with all the strength they have. As with all relationships, when a standoff has developed it can help to see a counselor who can often appreciate both sides of the situation, and help develop the understanding and compromises needed to keep the family together. It helps if the counselor has an awareness of brain injury your brain injury association may be able to link you up with one. Spouses will often come to a point where they feel the marriage no longer exists, and a sense that their former partner has a different personality. These are situations where counseling is beneficial to help decide whether to continue the relationship. This is one of over 100 fact sheets on brain injury available at reprinted with the permission of BIAQ. 19

20 20 OBIA REVIEW

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