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OCTOBER 2024 | HEALTHINSIGHT.CA
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A SPECIAL INTEREST SECTION BY MEDIAPLANET
Understanding Neurological Conditions SEIZING THE MOMENT:
How Self-Advocacy Helped Me Help Myself Advocacy is key for overcoming barriers to finding and accessing the tools needed to make life with your conditions easier.
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Tashon Daley
ince being diagnosed with epilepsy, I fought to get the right treatment to alleviate the symptoms of my condition. I pleaded with my doctor for a new neurologist, one who fully understood the nature of my epilepsy. My first two seizures were tonic-clonic seizures, characterized by a blackout and body convulsions, followed by confusion and grogginess. Many people
with epilepsy experience an aura beforehand. Mine hit me with a metallic taste in my mouth and a feeling of jamais vu. When my doctor introduced me to Epilepsy Toronto, they helped me learn the importance of self-advocacy and supported me in finding a new neurologist who better understood my needs. Through their educational sessions and workshops, I learned that
lethargy, disorientation, and blanking out could be related to my focal seizures. My new neurologist helped me find a new treatment that was right for me. This would not have happened if I had stayed silent rather than advocating for myself.
For more information, visit epilepsytoronto.org.
Navigating ALS With Trusted Knowledge And Support ALS Canada’s Canadian ALS Learning Institute program provides Canadians affected by ALS with access to experts to learn and ask questions. Justin Edmonstone
I
n today’s digital age, living with amyotrophic lateral sclerosis (ALS) and having access to countless sources of information might seem helpful. However, it can become overwhelming to decipher the accuracy of the information, especially within the context of the global medical and research landscape. ALS is a disease that progressively paralyzes people because the brain can no longer communicate with the muscles of the body, losing the ability to walk, talk, eat, swallow, and eventually breathe. The devastating reality of ALS – with no cure, limited treatments, and an average life expectancy of just two to five years – has nearly 4,000 Canadians living with the disease and
their families seeking trusted resources and accurate information.
Empowering patients with reliable resources To address this need, the ALS Society of Canada (ALS Canada) created the Canadian ALS Learning Institute (CALI), a free virtual program for Canadians affected by ALS. CALI provides an opportunity to learn and ask questions. “CALI is designed to meet participants where they are in their journey, including people with ALS and caregivers,” says Umayangga Yogalingam, Manager, Knowledge Exchange and Community Information. “The program sessions aim to provide clear information to improve understanding of the ALS ecosystem.” Participants gain knowledge and
resources to understand the disease, available treatments, clinical trials, research, and advocacy initiatives. This empowers them to make informed decisions, advocate for themselves, and influence stakeholders to ensure the community’s voice is part of the decision-making process. “At times, living with ALS can feel isolating,” says Andrew Dundas, CALI graduate and ALS Canada Community Ambassador. “Being able to ask experts questions and connect with other people living with ALS made me feel less alone.” By replacing fear and anxiety with knowledge and understanding, the CALI encourages the community to confidently access the care and supports needed to navigate this complex disease.
Andrew Dundas
If you or someone you know has ALS, reach out. To learn more, visit als.ca or call 1-800-267-4257. This article was sponsored by ALS Canada.
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