World MS Day 2016: Choosing independence

by Ben Davis, Vice-president, Government relations

The concept of independence is as personal as multiple sclerosis itself. For some people, independence can mean living within what I’ve heard someone call their “version of normal”. For others, independence can mean a great workout or carving out time for meditation. It can mean summoning the courage to ask for help. Independence can mean a great many things, and this May leading up to World MS Day on May 25, we’re celebrating all of the ways that people affected by MS maintain independence for themselves.

World MS Day is a powerful international movement to highlight the stories of people living with MS on a worldwide scale. Created by the Multiple Sclerosis International Federation (MSIF), World MS Day brings together MS societies from around the globe to raise awareness about the disease. The more awareness we raise, the more people in positions of influence will be able to effect real change for people living with chronic illnesses such as MS.

My name is Ben Davis, and I’m the vice-president of government relations with the MS Society of Canada. This week I am joining a team of incredible volunteers in Ottawa, where we will meet with members of parliament to make them aware of the many ways people with MS live their lives, and how MS affects those lives. The discussion, including our annual carnation pinning ceremony, will focus on two major action points crucial to enhancing independence: secure jobs and income for people affected by MS and accelerated research to find effective therapies for progressive MS. These priorities, along with our goals to ensure care for caregivers and quality lifelong care and support, push forward our mission to empower people living with MS make their own choices and maintain control over their own lives.

Life with multiple sclerosis can be difficult and its symptoms can have a profound impact on people living with MS, their families and their caregivers. From the moment of diagnosis and throughout the rest of their lives, people with MS will be faced with a number of difficult choices. Whom do I tell? Which line of treatment do I choose? Who will act as my caregiver? What kind of adaptations do I need to make to my lifestyle? Do I continue working? How will MS affect my family? Will I eventually need to enter a long-term care facility?

Throughout the next month, we’ll be profiling people living with MS who are choosing not to let MS define them. We’ll be sharing examples of what the word independence means to different people living with MS. We want to challenge perceptions of what “disability” looks like, and remind the public that people living with MS are more than their disease or disability. To find out about the contributions being made around the globe for World MS Day 2016, visit http://www.worldmsday.org.

Tell us what independence means to you in the comments below!

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    This is the link to the petition i started for the exact reason of people with me and many others needing help please take the time to read and sign ot use this in your meetings ☺ i was diagnosed Sept 2015 this has jot been easy . https://www.change.org/p/justin-trudeau-help-people-with-multiple-sclerosis-receive-income-support-they-need?recruiter=350845120&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_for_starters_page&utm_term=mob-xs-no_src-no_msg

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    I was diagnosed in March this year with MS. Independence for me means that two days ago I took a shower without needing somebody there to assist me for the first time since this flare up. It also means that I can leave the house with my brother in my wheelchair some days and still feel like I am in control.

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    When you are done in Ottawa can you please go to Queen’s Park in Toronto and speak to them. My wife has MS, she works for the Ontario government and for the last 2 years she has been through one heck of battle of them refusing to accommodate her, her boss telling her they do not accommodate MS and she works for the ministry of health. They have asked her if she still has MS, they say she does not look “tired”, she has MS Fatigue which is on prescribed medication for, they do not see all her many symptoms she suffers through on a regular basis, therefore nothing is wrong with her according the them. Seeing her struggle, seeing her cry, seeing her stressed and there is nothing I can do for her is hard. She wants to work, she is capable of working, she wants to be independent. She has lost her smile, I want to see her smile back, I want to see her happy again, she should not have to go through all she has gone through just to work and be independent. She needs to be treated with respect and dignity.

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      Hey Fabio! I’m so sorry to hear your wife is struggling. Please feel free to email me at tiffany.regaudie@mssociety.ca, and I’d be happy to connect you with our Ontario government relations manager who can tell you a little more about our advocacy program in Ontario. Thanks, and I really hope things look up for you soon — we’re here for you!

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    Appreciate you sharing, great article.Thanks Again. Want more.

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