Resources to help people living with generalized myasthenia gravis and neuromuscular junction disorders

It’s important to take a break when you start feeling fatigued. Don’t try to power through! Everyone is different and there are no particular recommendations about the timing, frequency or length of breaks. You may need a short nap midday or several 15-minute breaks throughout the day.

In the beginning, rest when you start to feel tired. Once you start to see patterns, you can try to plan for them. Each person is different and there are no specific patterns for rest. However, many people find that sticking to a schedule can help with energy management. For example, if fatigue is really bad around 3 p.m., plan a break or nap a half hour earlier. If you tend to forget breaks, set a reminder on your phone or other device.

A restful night of sleep is one of the best things you can do for yourself, but getting it is often easier said than done. Some studies show that people with neuromuscular junction disorders are more likely to have sleep problems such as poor sleep quality, excessive daytime sleepiness, restless legs syndrome and sleep disordered breathing.

If sleeping is hard for you, ask your care team for recommendations. If you’ve been told you snore loudly, it’s possible you could have sleep apnea and there are treatments that may help.

Here are a few tips for better sleep hygiene to get you started:

• Follow a sleep schedule – Try to wake up and go to sleep at the same time every day. If you nap, try to keep them to 20-30 minutes and not too close to bedtime.
• Create a relaxing bedtime routine – Doing the same things each night before bed can help your body know that it’s getting close to bedtime.
• Limit screen time before bed – Sleep can be affected by the blue light emitted by phones, televisions, tablets, laptops and other devices. So, try to limit their use before bed.
• Watch your diet – Avoid heavy meals, caffeine and alcohol close to bedtime. These can disrupt your sleep.
• Have a comfortable sleep environment – Your bedroom should be quiet, dark and cool. A comfortable mattress and pillows can also make a big difference.
• Don’t try to force sleep – If you can’t sleep, do something relaxing until you’re tired.

Changing your approach to everyday activities can help you have more energy when you need it most.

• Match activities with energy levels – Plan important tasks and activities for when your energy is usually highest.
• Rest when you can – Sit or lie down whenever possible.
• Focus on one thing at a time – When working on a larger task or project, break it into smaller pieces so you can complete it at your own pace.
• Use assistive devices – Make use of assistive devices for activities that consume a lot of energy. One example is using a scooter cart when shopping. Your care team can help you find a mobility device that meets your needs.

When you’re too cold or too hot it can make fatigue and other symptoms worse, so it’s important to plan for extreme temperatures. Things that can help include:

• Drinking plenty of water – Drinking fluids helps to keep your body at its optimal internal temperature and prevents dehydration. Make sure you drink throughout the day, especially when you’re feeling too warm.
• Planning breaks from the weather – If you’re participating in an outdoor activity, try to plan indoor stops that will help you cool down or heat up, maybe with an icy or steamy beverage.
• Starting the day rested – If possible, get good sleep the night before. If you can’t do that, make sure to nap and take breaks throughout the day.

Mindfulness meditation is a popular type of meditation. This is a practice that involves focusing your attention on the present moment, while calmly acknowledging and accepting your feelings, thoughts and bodily sensations. It’s a form of meditation that helps you become more aware of your thoughts and emotions without becoming overwhelmed by them. Regular practice of mindfulness meditation can help reduce stress, improve concentration and enhance emotional well-being. Try practicing twice a day for 5-10 minutes at a time.

Here’s how to do mindfulness meditation :

1. Find a comfortable position – Sit or lie down in a quiet place.
2. Focus on your breathing – Pay attention to the sensation of your breath as it enters and leaves your body.
3. Observe your thoughts – Notice your thoughts as they come and go. Try not to judge them or dwell on them. It’s normal for your mind to wander. Be patient and kind to yourself as you practice.
4. Return to your breathing – Whenever you notice your mind wandering, gently bring your focus back to your breathing.

• NeuroWell events and activities
• Common Ground Meditation Center
• The Meditation Center
• The Mindfulness App

Massage therapy can be a valuable part of a rehabilitation plan for neuromuscular junction disorders like myasthenia gravis. Massage therapy can improve muscle relaxation, circulation and mental health. Insurance does not pay for massage therapy, but FSA/HSA accounts may be used with a provider referral.

For more information, email neurowell@healthpartners.com.

Acupuncture encourages the body to heal naturally from within while improving function and well-being. Our team provides specialized services to help with symptoms of neuromuscular junction disorders. Check with your insurance company about coverage.

For more information, email neurowell@healthpartners.com.

Aquatic rehabilitation can be a very effective treatment option for people with neuromuscular junction disorders. Being in a pool increases buoyancy and provides gentle compression, making resistance training easier. Benefits include improved strength, stability and endurance. The Neuroscience Center HydroWorx pool has two depths of water with underwater treadmills, cameras and various aquatic exercise equipment.

For more information, call 952-993-5900 or email neurowell@healthpartners.com

The NeuroWell Individualized Exercise Program focuses on using exercise to improve physical fitness and overall wellness following a neurological diagnosis. All new participants will complete a baseline assessment with an exercise physiologist (a specialist who studies how the body responds to physical activity and designs exercise programs to manage health conditions). They will use the assessment to set goals and determine your current level of physical fitness. Participation may include group or private sessions.

For more information, call 651-495-6704 or email neurowell@healthpartners.com.

This group exercise pool program focuses on using water exercises to improve physical performance, physical fitness and overall wellness. Specific benefits include improved endurance and energy levels. Before participating, a pool therapist will assess you to determine if the pool exercise group is a good option for you.

For more information, call 651-495-6704 or email neurowell@healthpartners.com.

Foods that cause inflammation can make fatigue worse. Making changes to your diet can help reduce inflammation, helping to manage your symptoms.

• Cut back on foods that cause inflammation. These foods include refined carbohydrates (like white bread), fried foods, sweetened beverages (like soda), red meat, processed meats and unhealthy fats (like butter and lard).
• Eat foods that fight inflammation. Fruits, vegetables and fatty fish are full of nutrients such as antioxidants, vitamins and Omega-3 fatty acids that can help reduce inflammation. Great choices for an anti-inflammatory diet include:
  • Tomatoes
  • Healthy fats, like olive oil
  • Leafy green vegetables, like spinach and kale
  • Fatty fish, such as salmon, mackerel, tuna and sardines
  • A variety of fruits, including grapes, oranges, strawberries, blueberries and cherries

Eating protein helps maintain muscle mass and other processes in the body. Good options include:

• Lean meats – Red meat and processed meats can increase inflammation so try to choose lean meats instead. Poultry, especially white meat, can be a good option. Chicken breast is the leanest of animal proteins.
• Fish and shellfish – Fatty fish, such as salmon, is a great choice since it’s both a source of protein and anti-inflammatory. But other types of fish and shellfish are also great sources of protein and nutrients.
• Softer proteins – Foods such as eggs, cottage cheese and Greek yogurt can be good options, especially if it’s difficult for you to chew or swallow.
• Plant-based proteins – Tofu, beans and soy products are good sources of plant protein. If you’re thinking of limiting animal proteins (or you do so already), talk to your care team. We’ll help make sure you get enough protein.

If you have difficulties chewing or swallowing, ask your care team for help. They can provide recommendations that help meet your nutritional needs in a way that makes sense for you. Some general recommendations are:

• Eat foods that are soft – Choose foods that are naturally soft or can be cooked until soft. Moisten solid foods with water, milk, broth or another liquid.
• Avoid food that can’t be softened – Try to stay away from dry, crumbly foods, such as crackers, cookies, chips or popcorn.
• Thicken liquids – If it’s difficult to drink, thicken liquids so they’re easier to swallow.

The HealthPartners Institute regularly participates in neuroscience clinical trials and shares information about opportunities in our HealthPartners research opportunities newsletter (PDF). We are currently looking for people to participate in the following study:

The purpose of this study is to test the difference between light- and moderate-intensity exercise on health outcomes in people with this condition. Participants will be placed randomly into either a light-intensity exercise group or moderate-intensity exercise group.

If you’re interested in participating in this research study, talk to your care team, call 651-495-6363 or email ClinicalTrials@healthpartners.com.

You can find a list of active myasthenia gravis clinical trials on clinicaltrials.gov .

The objective of the study is to validate the accuracy, reliability and reproducibility of the unsupervised at-home self-assessment of symptoms on the patient's smartphone using the ME&MG standalone software versus the standard in-clinic testing.