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Tourette Canada's Magazine Spring 2017

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Tourette Canada's Magazine Spring 2017 TOURETTE CANADA’S MAGAZINE SPRING 2017 IN THIS ISSUE: Be the Art Card Contest The need for volunteerism Having fun with Tourette Living through the storm Tourette Syndrome Q&A Helpful resources UPLIFT: THIS SUMMER AND ALWAYS Due to this teamwork, the flock can fly over 70 per cent further than if one goose flew By Ramona Jennex, President by itself. When the goose in front gets tired, he or she moves to the back and another takes the ummer: a time for many of us to get lead. outdoors and enjoy nature. As you enjoy your summer, remember S One of my favourite activities is you are a part of a family and a community watching the wildlife that visits my property in that is flying ahead to help provide uplift and rural Nova Scotia. I get many visitors, such as support. Sometimes you or a family member raccoons, skunks, deer, groundhogs, and many will take a turn in front to provide the uplift for birds. I hope many of you will have the chance others. to experience nature this summer. The lack of structure in the summer - If you happen to be so lucky to see being away from school friends and the hot geese flying overhead, note their ‘V’ forma- weather - can create stress. Reach out to your tion. You might be interested to know that ‘flock’ if you need support: they are there to geese fly that way because when each bird provide you uplift. My hope is for you to take flaps its wings, it creates uplift for the birds the time to rejuvenate and have a summer behind them. filled with adventures, fun, and joy. National Board of Directors Tourette Canada Staff Ramona Jennex—President Jennifer Neumair—Interim Office Manager and Dr. Robert Dykes—Past President Peer Support Coordinator Cathy Wylie—Vice President Jaslen Noorpuri— Volunteer & Affiliate Support Lorne Perrin—Treasurer Cordinator Adam Goodman—Secretary Similie D’Souza—Bookkeeper Sherri Brayshaw—Director Vernon Siddayao—Member Relations Steve Colle—Director Coordinator Kirk O’Brien—Director Chris McGregor—Marketing and Maria Robson—Director Communications Coordinator Janet Rumsey—Director Don Nelson—Director VOLUNTEER COORDINATOR: Bringing Education Home or Jaslen Noorpuri, creating awareness of “They (those with Tourette) live their life with courage Tourette Syndrome starts at home. just like anyone should be living their life,” Noorpuri As Tourette Canada’s volunteer co- said. F ordinator, it is her role to recruit, train and With a social service worker diploma and an manage the volunteers working with Affiliates across undergraduate degree in sociology from the University the country. of Toronto adorning her wall, Noorpuri said her train- “Being south ing made it an easy choice to enter the non-profit sec- Asian, there is not tor. much talk about “Sociology is the study of the interaction of Tourette Syndrome.” people. It gets you ready for non-profit work and it In accepting this role, made me more open and honest. The way I interact Noorpuri said, “I felt with people is going to reflect how they interact with that it was an opportu- me. Not everyone has the same walk of life that I did nity, at least in my and this role gives me a realistic view of the world.” family, to raise aware- Noorpuri said her main goal is to develop more open ness. Tourette Syn- communication with all of Tourette Canada’s Affili- drome is notCanadian as widely Guidelines ates and tofor recruit the more volunteers to bring about known as otherEvidence condi--Basedchange Treatment that will of improve and enhance the lives of tions. We don’tTourette talk Syndromethose living with TS and TS+. about the mental, Having just graduated from university and physical, and emo- landing with Tourette Canada as her first professional tional conditions and job, she is confident in her decision to work in the non this role gives me the -profit sector. opportunity to open up that conversation.” “It’s liberating being in a role where you are Noorpuri’s reach and desire for education ex- making a difference in some way. I want to help as tends beyond the walls of her home, however: one of much as I can in making someone feel accepted in this her main responsibilities is to find and train volunteers world. It’s a freeing experience.” to conduct In-Service sessions in schools, workplaces, If you are interested in volunteering with and churches to present the facts about Tourette Syn- Tourette Canada, please contact Jaslen Noorpuri at drome, while reducing the stigma and addressing mis- [email protected] or by calling 905-673- conceptions and myths attached to the condition. 2255 or 800-361-3120. WHY DO WE VOLUNTEER OUR TIME? By Jaslen Noorpuri – Volunteer and Affiliate Support Coordinator olunteering is a way to get involved with different companies, associations, and non-profit organiza- tions in the community to help contribute to the overall success and well-being of the organization. The act of volunteering allows people to not only get involved at a macro or larger scale, but to help V be a part of the micro or smaller details that are vital for the overall functioning of any and all estab lishments. Volunteering has many different facets that contribute to basic and more intricate specifics of any insti- tution. Volunteer Canada outlines that the act of volunteering is “fundamental to a healthy and democratic soci- ety in Canada, builds the capacity of organizations, is personal, and is about building relationships.” Most organizations encourage volunteer recruitment and engagement. Statistics Canada reported that “in 2010, about one-third (33 per cent) of volunteers who were employed said their employer had a program or policy to encourage volunteering. This is up from 29 per cent in 2004.” Continued on following page Furthermore, this statistic has risen since then. In 2013, through a Statistics Canada survey, it was found that “44 per cent of Canadians volunteered their time.” It has been proven throughout the years - with percentages increasing and more people getting involved with each passing year - that the act of volunteerism is not only helpful to companies and organizations, but also to the volunteers themselves. Volunteerism allows for self-reflection, a chance to give back to a commu- nity and people, and help be part of a larger path of change, evolution, and greatness. There are many benefits to becoming a volunteer. They include: Help in being an integral part of the overall structure, formation, and overall/basic system of the or- ganization; Flexible hours and the ability to showcase talents and reinforce areas of strength; Sense of fulfillment by giving back to communities, families, and individuals by dedicating your time and efforts; Build interpersonal and intrapersonal skills by working in both team and individual settings; Great opportunities for optimal networking and gaining workplace credibility; Help in bringing in fresh new ideas in bettering the organization as a whole; Raising awareness and advocating for different groups within all communities; Gain practical, theoretical, and common knowledge while also self-reflecting, therefore not only contributing to the success of the organization, but also your own personal growth. For Tourette Canada, our volunteers are our cornerstone towards helping us attain our goals of raising awareness, supporting those living with Tourette Syndrome (Plus), and advocating for them throughout schools and the community. Tourette Canada provides support by working hand-in-hand with its many volunteers all over Canada. Tourette Canada is currently looking for volunteers to support the many services we provide. From Virtual support group facilitators to helping in raising awareness about Tourette Syndrome as an In-Service Provider. Across the nation and at special events, volunteers are highly valued, respected, and welcomed. If you are interested in volunteering with Tourette Canada, please call our Home Office at 905-673- 2255 or toll free at 1-800-361-3120 between 9:00 a.m. and 5:00 p.m EST. TOURETTE SYNDROMEOURETTE SYNDROME (TS) IS A NEURODEVEL- OPMENTAL OR BRAIN- T BASED CONDITION THAT Q&A CAUSES PEOPLE WHO HAVE IT TO MAKE INVOLUNTARY SOUNDS AND MOVEMENTS CALLED TICS. WHAT IS A TIC? Tics are sudden, intermittent, repetitive, unpredictable, purposeless, non -rhythmic, and involuntary movements or sounds. Tics that produce movement are called ‘motor tics’, while those that produce sound are called “vocal tics” or “phonic tics.” Tics can be either simple or complex. Simple motor tics involve one muscle group and can include eye blinking, lip-licking, shoulder shrugging, and head jerking. Complex motor tics involve a coordinated movement produced by a number of muscle groups, such as touching objects, jumping, or spinning around. Complex motor tics may also include imitat- ing someone else’s actions (echopraxia) or exhibiting inappropriate or taboo ges- tures of behaviours (copropraxia.) `Simple vocal tics include sniffing, grunting, throat clearing, uttering single syllables (e.g. uh-uh-uh), and/or humming. Complex vocal tics include uttering lin- guistically meaningful utterances (words and phrases) or changing the pitch and vol- ume of voice. Complex vocal tics may also involve repeating a phrase he/she has heard over and over (echolalia), repeating one’s own words (palilalia), or uttering ob- scenities or socially taboo phrases (coprolalia). The most important thing to understand about the tics associated with Tourette Syndrome is that they are the result of a neurodevelopmental condition. The sounds and behav- iours are not being done by choice. WHAT CAUSES TS? TS is a genetic condition, meaning it is passed on from parent to child. This does not mean that if some- one has TS, their son or daughter will also be born with TS.
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