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Trish, a yoga enthusiast and caseworker, was 15 when her mother was diagnosed with multiple sclerosis (MS). So, she knew what it was when diagnosed with the same disease at 28; after all, Trish grew up watching her mom slowly deteriorate because of it. “It’s been quite a journey but having someone in my family who has MS helped me to accept my own diagnosis a little bit better.”
The experience also provided her with insights and perspective on why advocating for oneself and consistently collaborating with her neurologist and care team is so important.
MS is a chronic and progressive autoimmune disease that affects the central nervous system. The immune system attacks the protective sheath that surrounds the neurons in the brain and spinal cord. This can lead to physical and non-physical symptoms such as fatigue, numbness and tingling, blurred vision, double vision, weakness, poor coordination, imbalance, pain, depression and problems with memory and concentration.
Trish’s initial symptoms started in 2017 with a sharp migraine that landed her in the hospital. By the time her migraine passed, half of her face was numb, and she was having difficulty walking. Luckily, those symptoms subsided. After many tests, Trish received her diagnosis in June 2018.
Dealing with an MS diagnosis
“Even though every person experiences MS differently, having a bit of knowledge from my mom helped in understanding my own experience,” says Trish. “It was no less overwhelming at all, but I did have some mental preparedness.”
Trish’s advice: A lot of feelings come up with your diagnosis, so it’s important to honour those emotions. Build a support system that’s not just your care team, but includes people around you whom you trust and feel comfortable with.
Choosing a treatment plan
Trish says that helping care for her mother allowed her to better advocate for what she wanted in her treatment plan. “I felt like I had a tool in my resource belt to make conversations with my care team easier and to help me ask the right questions to determine the right plan for me.”
Before deciding on her treatment, she says she took a deep dive into what she wanted out of life and how she envisioned her lifestyle with MS. “You can’t separate the two as they impact each other. Understanding that helped me narrow down what was the right fit for me.”
Choosing a treatment plan soon after diagnosis and getting started is important as some treatments may help slow down the progression of physical disability. “I knew that I wanted to live my life without having MS dictate how it should or shouldn’t be, so I thought about treatment options in a more holistic way,” says Trish. She considered how the treatment would be administered and how frequently she would have to take it. She also asked how the plan would affect her lifestyle.
Trish’s advice: Knowledge is power! Do your research and ask lots of questions about your options, like ‘how effective is it,’ ‘what are the side effects and risks?’ or ‘how might some options affect things like work or travel?’
This MS Treatment Discussion Guide was developed to help people living with MS make decisions around their treatment options. It encourages deep thinking around personal mindset, goal setting and lifestyle priorities.
Becoming a strong self-advocate
Trish also emphasizes how a strong and trusting collaboration with her neurologist is essential to ensuring that her MS experience can be as positive as possible. “To me, being a self-advocate means engaging in clear and concise communication with the people involved in my care. It ensures that we’re all on the same page and it boosts your confidence when you’re able to comfortably say ‘no’ or, ‘hold on, can we talk more about this?’”
Trish’s advice: When it comes to making any decision, you are your number one advocate. Create a community with your care team so that you can feel safe enough to ask questions and speak up about your needs and concerns.
Finding flexibility in your care plan
Trish loves that her job gives her the opportunity to connect with people, but it also requires her to process a lot of information. “Lately, I’ve noticed that I’m processing things slower than usual—one of the cognitive effects of MS,” she says. It’s a good reminder that along with the yoga and meditation she practices, she has to be flexible in her expectations—and that goes for her treatment plan as well.
Treatment decisions aren’t set in stone. They can vary depending on your goals, lifestyle priorities, symptoms and side effects. People living with MS have permission to change their treatment if they feel it’s not working for them. “That’s why it’s vital to communicate with my care team about how I’m doing and what I’m thinking so we can make appropriate changes together if needed,” says Trish.
Trish’s advice: Whatever decisions you make today, you won’t be attached to them for the rest of your life. It’s important to understand that initiating treatment doesn’t mean you can’t change. Remember you are in control of your journey with MS.
Inevitably, Trish knows that her MS experience may be challenging at times and that she might not always be optimistic about her health. “But I do believe that my ability to communicate effectively to my care team can help to ensure I feel cared for. At the end of the day, no one is more of an expert on your MS experience than you.”
Visit MyRules.ca for more helpful resources for navigating life with MS.