What Does Moving Forward with Myasthenia Gravis Mean to You?

Looking to the future and considering your aspirations may help you move forward with myasthenia gravis (MG).

Anyone living with MG is likely familiar with the range of emotions that may come with the diagnosis. Not only are you figuring out how the disease fits into your life, but you may also be coping with the loss of how you lived your life before. Whether your diagnosis is fresh or has been a part of you for years, learning how to move forward may be a big step—and doing so may help you revisit past interests or even discover new ones. 

As part of the 2022 MG Illuminate event, we asked several people in the MG community what moving forward means to them. From maximizing retirement to building creative skills to simply taking things day by day, there are a variety of meaningful and personal goals that people in the MG community are pursuing.

Watch below to see what they said, and ask yourself: What does moving forward with myasthenia gravis mean to me?

No two MG journeys are the same, which is why the answer is different for everybody. Think about your answer; then consider the following tips to help you feel best equipped to make it a reality.

1. Form a Partnership with Your Doctor

Being able to talk comfortably with your doctor and having a well-rounded care team may be a great foundation for moving forward. In addition to a neurologist, you may consider physical and occupational therapists, mental health experts, registered dietitians and other specialists who might give unique insights for various aspects of MG. Try to determine what kinds of experts you’d like to have on your care roster, what qualities would make them a good fit for you and how they might help with your goals for the future. Then, try using this discussion guide to help prepare for appointments with them so you can discuss objectives in a productive way that supports your journey.

2. Figure Out Your Treatment Objectives

It may be worth taking the time to understand whether your current treatment is helping you work toward your goals. Getting familiar with the MG treatment landscape if you’re newly diagnosed, or reviewing how it has changed if you’ve been living with MG for a while, might help you feel more knowledgeable about your options. Be sure to discuss all your options with your doctor so you can make an informed decision about how you may be able to move forward with your personal goals.

3. Practice Self-Care Activities

Don’t forget to pause every now and then and do something nice for yourself! While you might do many activities to help manage physical MG symptoms, think about self-care practices that may support your emotional wellness. Such self-care activities could be related to your personal goals, like dedicating time to drawing if you hope to improve your artistic skills, or meditating if you’re aiming to feel more at peace. Regardless of whether these activities tie directly to your goals or not, caring for your well-being might be an important stepping-stone to the future you’re after.

4. Incorporate Healthy Physical Habits Where Possible

When you have MG, it may feel like things are out of your control when it comes to physical wellness—but MG-friendly exercises, recipes and energy-saving tips may help you feel your best. Take steps to care for your body however you can, from trying out fitness routines to learning meal prep tips that might simplify healthy cooking. If one of these activities specifically relates to your hopes for the future (perhaps you want to improve muscle strength or get better acquainted with the kitchen), even better!

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5. Tap into Your Support System

Talk to your family, friends or anyone else you trust about your vision for moving forward. Hearing your thoughts out loud and getting other perspectives may help shape your plans to best reach your goals. Just as you’ve likely discussed your MG diagnosis and challenges with your support system, consider taking a similar approach to share what moving forward means to you and how they may be able to help you get there. If you live far from family or are looking for new connections to support you, there are also advocacy organizations and support groups that might be useful. Chatting with others who live with MG and learning about their plans might inspire you on your path forward!

Regardless of the path you choose, remembering to prioritize what matters to you may help. Keep track of what you want for your future self as you move through your MG journey—and reference the tips and video above if you ever need a jumpstart!


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