MÉMO-Qc, formerly the Quebec Paraplegic Association, is a non profit organization. Our primary mission is to promote the independence of people with spinal cord injuries, but we also offer services to all Quebecers living with a disability. To improve the quality of life of its members, MÉMO-Qc works in four fields: social integration, employability, advocacy and research support.
About
Who are we
Social Integration
Our integration services meet the needs of people with spinal cord injuries from across Quebec by ensuring a continuous presence in the Centers of expertise for SCI. We also have a presence throughout
Quebec in other rehabilitation centers. MÉMO-Qc offers various services to enable patients help to maximize their rehabilitation and social integration after a spinal cord injury (Refers to damage to the spinal medulla.
), working in tandem with the rehabilitation centres throughout the patient’s rehabilitation process. In addition, our integration counsellors who are themselves living with a spinal cord injury (Refers to damage to the spinal medulla.
), can ben beneficial to our members as peers by sharing their experiences and achievements, providing support, guidance and information.
Employability
Our employment services are available to assist people with physical or neurological disabilities in their process to find employment or return to school. The primary objective of our counsellors is to help our members develop their independence, promote their social integration, and above all to help keep them employed.
Advocacy
MÉMO-Qc is responsible for educating the public, policymakers and employers on the issues related to spinal cord injury (Refers to damage to the spinal medulla. ) and persons with disabilities. Our counsellors can also assist individual members who feel their rights are not being respected. Moreover, the prevention of spinal cord injuries is one of our major concerns.
Research Support
We support Quebec research projects, help recruit participants and disseminate research publications that are relevant to our members.
Message from the Director General
Moelle épinière et motricité Québec is happy to present the second edition of its guide Living with a Spinal Cord Injury (Refers to damage to the spinal medulla. ).
This second edition is being published after the first version, which was published in 1996 originally entitled Living after a Spinal Cord injury (Refers to damage to the spinal medulla. ). The first edition has been completely reedited in order to provide you with a complete, informative and inclusive guide, which provides a full account of both traumatic and non-traumatic spinal cord injuries.
The guide is closely aligned to current realities of individuals living with spinal cord injuries and contains two new chapters, on assistance dogs and labour market integration.
In order to communicate the information as clearly as possible, we have provided testimonies in order to personalize the contents of the guide in a very unique way. The testimonies have been carefully integrated into the contents, representing the life experiences of five fictional characters.
The new edition has also greatly surpassed the original hardcopy edition, because it is now available in electronic format, which will be periodically updated to include the latest scientific, medical and social advances.
Like the first edition, this second edition will be provided in both French and English.
As you may well appreciate, the production of this reference guide has required significant efforts and contributions from many different resources – several dozen in this case – because our goal was to ensure that it provides the latest and the highest quality information. The resources who worked on this book include:
- The coordinating committee, consisting of highly qualified program heads from both the health and social service network and from our own organization, which defined the main orientation of the new second edition;
- Specialists and professionals from various health and science fields, who helped review, update, correct and improve the specific contents of each chapter;
- The reading committee consisting of individuals living with spinal cord injuries and who have acquired relevant expertise, taking into account of their appropriate points of view;
- The members of Bon melon agency, who designed the hard copy and the electronic web version of the guide;
- The illustrator François Escalmel, who brings to life the characters in this guide while providing an attractive visual presentation throughout the entire text;
- Individuals who cooperated to provide content specific information on a variety of topics.
The publication of the new edition of Living with a Spinal Cord Injury (Refers to damage to the spinal medulla. ) was made possible through the financial support of the Société de l’assurance automobile du Québec (SAAQ (Société de l’assurance automobile du Québec )), the ministère de la Santé et des Services sociaux du Québec (MSSS) and the Fondation Moelle épinière et motricité Québec. We thank our sponsors for the precious support they have provided as well as other individuals who helped produce the latest edition.
In addition to providing an updated edition of the guide after 21 years, our main goal was to provide a reference work to both accompany and inform individuals living with a spinal cord injury (Refers to damage to the spinal medulla. ) as they carry on with their lives. The purpose is not only to help them recover their autonomy but also to lead them toward full social integration so as to attain new fulfilment in their lives.
We fully understand that the road to fulfilment will include many very demanding obstacles and challenges. Such obstacles and challenges may often create a feeling of helplessness for many people. However, we also know that the vast majority of individuals living with spinal cord injuries do succeed in overcoming these trials and usually emerge with greater strength. Many of them have become a source of inspiration to their counterparts and to society as a whole, because of their resilience, courage, tenacity and willingness to seize life, despite the limitations imposed by their condition.
In order to pay homage to their often forgotten and underestimated courage, we dedicate this new edition to all individuals living with spinal cord injuries. We hope that this guide will help them to continue to flourish socially for the greater common good of all.
Walter Zelaya
Director General
Moelle épinière et motricité Québec
Introduction
Are you living with a spinal cord injury (Refers to damage to the spinal medulla. )? You may have just received the diagnosis, or perhaps it is a condition with which you have been living for several years? Your injury may be complete or partial, high level or low level, traumatic or non-traumatic.
Regardless of your condition, this guide may be useful for you.
Whether you are currently in a rehabilitation centre or have returned to an active life for several years, you will find a wealth of information in the following pages.
This guide is not only designed for individuals living with a spinal cord injury (Refers to damage to the spinal medulla. ), but also for the family and friends, health and social service professionals, students and researchers. It is a guide that can be very helpful to any individuals, directly or indirectly involved with individuals who have spinal cord injuries.
The work consists of two separate but complementary parts.
The first part consists of fourteen chapters that present fact-based and practical information on various subjects. Such information ranges from managing the urinary system to reintegration into the work force. It also presents information on assistance dogs, the redefinition of social roles, and various aspects of life of individuals with spinal cord injury (Refers to damage to the spinal medulla. ).
If you or someone you know has recently experienced a spinal cord injury (Refers to damage to the spinal medulla. ), we recommend that you read the entire guide. The guide has been designed to provide a coherent presentation to accompany by the rehabilitation journey of a person who has had a spinal cord injury (Refers to damage to the spinal medulla. ).
Please feel free at anytime to discuss or to explore more fully the contents of this guide with a member of our team of integration counsellors.
If you have been living with a spinal cord injury (Refers to damage to the spinal medulla. ) for several years, it may not be necessary to read this guide from cover to cover. Feel free to skip specific chapters and to go directly to the subject that interests you or to focus on the sections which are most relevant for you.
Whatever your needs may be, please proceed at your own pace! The guide has been designed so that it can be read in many different ways, by different people and at different times of their life, according to current need.
We have tried to simplify the text as much as possible. You may nevertheless encounter certain passages which are more difficult to understand. Some of the vocabulary used to describe spinal cord injuries can be quite technical and there may be terms that you will be reading for the first time. To facilitate your understanding, we have provided a Lexicon at the end of the guide.
If some of the terms are too technical or if you would like to meet someone to discuss them further, our integration counsellors would be more than happy to help you. Please contact us at any time.
Enjoy your reading!
As you read through this guide, you will meet five characters - Thomas, Patricia, Adam, Kim and Patrick – who all live with a spinal cord injury (Refers to damage to the spinal medulla. ).
Although the characters are entirely fictional, their stories and anecdotes are authentic. Each character has his or her own personality and individual life experience, but they have all encountered situations in which you may very well find yourself.
We invite you to follow their stories closely, as they appear in the text and are easily identified by different coloured font as well as the illustration of the face of the character who is speaking.
Thomas
Thomas is a young and dynamic individual who loves to travel and to take part in sports. As a teenager he suffered his injury at the L4 vertebra (Each bone that forms the spinal column. ), and this turned his life up side down.
It is not easy to become a paraplegic at a period of life, which is full of intense emotions and experiences! The most difficult thing for Thomas was to see how people began to look at him differently. For four years, he went through a very dark period!
Not only did he have to learn how to live in a wheelchair but also he had to rethink his entire future, deal with health issues and discover his sexuality in a context, which most young people of his age could not even imagine.
Despite everything, Thomas never gave up and it was through sports that he regained confidence in life. His favourite sport is adapted water skiing and he never misses an opportunity to hit the waves, at home or abroad.
Thomas now lives a very full life through his work, sports, family and his companion. As he enters into adulthood, Thomas can now claim that he has his full future before him!
Patricia
In her mid-fifties, Patricia has encountered great challenges and great success and has always been willing to forge ahead. Patricia has been living with a full C5-C6 spinal cord injury (Refers to damage to the spinal medulla. ) for ten years and is confined to an electric wheelchair.
She has dealt with both grief and various health problems and sometimes even despaired that she would never find a new balance to her life. It is pretty hard to imagine when you see her today!
Ambitious and fully committed to her work, Patricia found a stimulating job that helped her engage in projects that are fully aligned with her values. As an active supporter of the rights of the disabled, Patricia does not frighten easily!
She also confesses that she never would have succeeded without Martin, the love of her life, but Martin on the other hand, claims that it is the personal strength and resilience of his wife that have helped him accomplish great things.
Patricia is an example of courage and perseverance for many people.
Adam
Adam is the oldest member of the group. He is close to 70, and for the past twenty years has lived as a tetraplegic, Adam had to overcome numerous trials as he sought to adapt to living with a high-level spinal cord injury (Refers to damage to the spinal medulla. ).
Through his spinal cord injury (Refers to damage to the spinal medulla. ), Adam has faced the full range of side effects and discomforts such as pressure sores, edema (Inflammation caused by accumulation of liquid in an affected area. ), and sleep apnea. For years, he learned how to live differently without resigning himself to simply stop living!
How do you find your place in family, in the world of work and in society after suffering a high-level injury? It was far from easy, but Adam succeeded!
He was very fortunate to meet a new companion, Sylvie, who has been his partner for many years. This was a turning point in his life, but his involvement as a volunteer peer counsellor brought new meaning to his life. He provides valuable assistance which has allowed and continues to allow many people living with spinal cord injuries to make it through some of the darkest times of their life.
Adam has every reason to be proud!
Kim
In her mid-thirties, Kim lives with a partial spinal cord injury (Refers to damage to the spinal medulla. ). She has flourished in her role as a mother, but her life is far from being limited to motherhood.
The diagnosis of a spinal cord injury (Refers to damage to the spinal medulla. ) was a terrible shock for Kim, which required several years of grieving. Her activities were severely constrained by chronic pain, which became a source of great frustration at this period in her life.
Kim continues to face challenges on a daily basis, but she has developed strategies that have helped her successfully overcome the obstacles in her life. Her love for her two darling little daughters has become a powerful source of motivation, which has brought new balance to her life.
As an assistant librarian, she has continued to grow despite her physical limitations. Kim can now look forward to the future with confidence. There are, undoubtedly many more wonderful things that she can look forward to in life!
Patrick
Now in his forties, Patrick is ambitiously pursuing a brilliant career with a busy schedule. He does not have much time to stop. His
ambition for work has caused him a few health problems and at various times he has had to stop. It is an important lesson that he has learned and he now tries to listen more closely to his body.
This has never prevented him from moving forward and tenacity is one of his greatest qualities. He has been a partial tetraplegic for several years now, but Patrick is the first one to admit that the spinal cord injury (Refers to damage to the spinal medulla. ) definitely changed his life, for better and for worse.
He had no other choice but to reinvent his life and to review his priorities. Among other things, this helped him to stop drinking and to pursue a career to which he was perfectly suited. He decided to take over the family business and move it in a new direction.
At the beginning seeing his body image greatly transformed, caused a great deal of suffering to Patrick and it took him a long time to regain his confidence in life. One of his greatest sources of strength is his faithful mobility assistance dog, Bagou. Bagou has helped him acquire greater autonomy and self-confidence.
Who knows where this renewed self-confidence may lead him?
