During your treatment, ONWARDTM can provide support to help you make the most of your experience with ZILBRYSQ. Whether that means self advocacy, treatment tracking tips, or one-on-one support from your dedicated Care Coordinator – ONWARD is here for you.
Tracking your symptoms is an important part of your treatment plan. By documenting your symptoms regularly, you can help tell your healthcare provider how symptoms are impacting your life.
Work with your healthcare provider to determine how often you should be tracking. To track symptoms, you can use the MG-ADL.
What is the MG-ADL?
The Myasthenia Gravis Activities of Daily Living (MG-ADL) scale is used to measure your gMG symptoms. This tool assesses the impact of MG on your daily functions and communicates your symptoms to your healthcare provider.
Once you’ve tracked how your symptoms appear, make sure you bring that information to your healthcare provider’s appointments.
Why track symptoms?
When you write down your symptoms every day, you can accurately and effectively communicate with your healthcare provider about your gMG. Tracking only takes a few minutes each day and can help guide your treatment path in a positive, constructive way.
Appointments may be brief.
When all of your symptoms are documented in one place, your healthcare provider can quickly understand how your gMG is impacting your everyday life.
You know your symptoms best.
It can be difficult to accurately, clearly discuss symptoms with your healthcare provider. Writing down your symptoms can make it easier to communicate effectively during your appointment.
You can form a team with your healthcare provider.
Tracking your symptoms shows your healthcare provider that you are a proactive partner in your healthcare.
When you have your self-injection training, your healthcare professional will explain how to choose and rotate injection sites. Rotating injection sites means choosing a different site to inject each time you give yourself an injection. Do not inject ZILBRYSQ into an area that is red, tender, bruised, swollen, hard or that has scars or stretch marks.
We’ve created a ZILBRYSQ treatment Tracking Diary that helps you document and monitor your injections. If you don’t already have this diary, your Care Coordinator can provide you with one.
Your Care Coordinator can also help if you ever need a refresher on the self-injection process, or you can view this video.
Getting started on a new treatment can take a lot of your energy. You can use these tips to help find your momentum.
Mindfulness
This is the process of maintaining a moment-by-moment awareness of your thoughts. As you practice mindfulness, you can focus on the present moment instead of worrying about the future or dwelling on the past.
- Sit in a quiet place and breathe deeply.
- Focus only on your breathing. As your mind starts to wander, bring your thoughts back to your breath.
- Stay like this for 5 minutes.
In the short term, mindfulness exercises can promote relaxation and de-stressing. Over time, repeating this process will help you choose where to channel your thoughts and feelings throughout the day. For example, if you are experiencing stress over something that is outside of your control, mindfulness can help alleviate that stress by channeling your thoughts elsewhere.
Making Time for Yourself
Remember, you are more than your gMG. You don’t need to dedicate all of your waking hours to your treatment. So be sure you make time for the other parts of your self. Set aside time to enjoy your hobbies, quiet time, or whatever else makes you happy.
Making time for yourself could also mean resting. When you’re feeling low on energy, don’t feel guilty about lying down or having an afternoon nap. After your rest, you can get right back to your day.
Simple Things
Always make time for life’s simple pleasures. Enjoy a good meal, talk with your friends, or play with a pet. These are some of the best things life has to offer, and living with gMG doesn’t mean you need to miss out on them.
Self-Kindness
Above all else: Be kind to yourself. Cut yourself slack, celebrate wins, and recognize the progress you’re making. A little kindness goes a long way.
As you go through your treatment path, keep your healthcare provider informed about your progress. If you see any changes in your symptoms or how you’re feeling, discuss these things with your healthcare provider.
Your ONWARD Care Coordinator is also here to help. Don’t hesitate to get in touch with your dedicated Care Coordinator.