Talking About MG Tips for Daily Living Exercise and Fitness Nutrition Employment
Talking About MG (with friends, at work)
You are learning about myasthenia gravis (MG) and it can be confusing. It is also confusing for your family, friends and coworkers. What do you share? Only you will be able to determine the level of information and support that feels appropriate for you. However, a good starting point is sharing facts about MG with family, friends and coworkers to help them better understand your condition.
How then do you communicate about MG? Sometimes it is helpful to share our Infographic (link to Infographic) with those learning about MG for the first time. This provides a pictorial overview of MG and may answer many questions. What does MG look like? Who can get MG? Where can I learn more about MG?
After sharing this, you can ask people to share any questions they have. A coworker may be concerned about how MG affects your work; a family member may be concerned about how to support you in this journey; a friend may be concerned about how it affects your social activities.
Be comfortable with what you share, and how much detail you reveal. Remember, educating others can help you build a support system so you can live your best life with MG!
Tips for Daily Living
Living your best life with MG is possible, but you may have to adjust to your limitations or do things differently. We’ve assembled some of the best coping tips from people with MG here. This is not a complete list, but a good start to managing your MG.
“When my energy level is low, I [was told to] conserve energy for the important things like swallowing and breathing by adjusting the way I do my activities. Don’t stand when I can sit, and don’t sit when I could be laying down.”
“Help conserve your energy by planning the activities that take more energy for the time of day when you feel your best, or after your mestinon “kicks in”. Activities like exercising, house cleaning or lawn mowing should be done when you feel your best. Plan quieter activities such as paying bills or computer work for when your energy level is dwindling.”
“Sometimes, heat may exacerbate your MG symptoms. I beat the heat by keeping a cooling towel in the refrigerator and apply it to the back of my neck when I get too hot.”
“When it’s hot outside I stay in the air conditioning. Don’t have AC? Go to your local library, movie theatre, or shopping mall to get cool.”
“Don’t be afraid to ask for help when you need it. It is not a sign of moral weakness. Most of the time people are happy to be able to help you in some way. It not only helps you but also makes them feel needed.”
Quality of Life Assessment & myMGapp
How are you doing? You will hear this question often, but every day might be different. To help you assess how you are doing and living with your MG, download the MGFA MyMG Mobile App app. The app will cover information that may not come up in a typical doctor visit to help you assess the overall impact of MG on your life. Through questions about activities of daily living and quality of life, it can track multiple aspects of MG to encourage discussion with your healthcare professional.
Exercise and Fitness
Myasthenia gravis presents many challenges, not least of which is reduced fitness due to limited capacity for continued muscle use. This is especially true at the onset, where people often experience long delays in obtaining a proper diagnosis of MG. Many experience weakness and fatigue for prolonged periods before achieving some degree of remission (with or without medication). But for most patients with MG, eventually there is an opportunity to recover strength. Every MG patient has their own path, often fraught with challenges along the way. For those helped by treatment, or who are experiencing remission, there are ways that you can stay active.
By setting reasonable goals and measuring progress, you can improve your ability to maintain an exercise routine. For example, you could start with 2 minutes a day on a treadmill and work your way up to 10 minutes, making sure to stay at a pace that works for you. If sports are not for you, also keep in mind that low-impact exercises like walking, yoga and band resistance exercises are also great options to stay active.
While it can be hard to get motivated, we have some tips that can help you incorporate a fitness routine into your daily life:
- Set reasonable goals- everyone’s MG is different, make sure to find what works for you
- Allow time for rest periods and/or breathing exercises
- Measure your progress- this can help you see the change and motivate you towards your overall goal!
- Get adequate sleep during nighttime
- Don’t go it alone- having a partner to exercise with is a great way to stay motivated!
Good nutrition is important for everyone. This is especially true if you have a chronic disorder like myasthenia gravis (MG) where some people may experience difficulty chewing and swallowing. To maintain normal body function, you need a balanced diet with adequate nutrients.
There are some areas of nutritional concern for people with MG. First, be aware that nutritional deficiencies frequently result from making poor food choices. Fatigue and difficulty with chewing and swallowing may interfere with nutrition and create safety issues. Diet modifications may be advisable if you are taking certain medicines for MG.
Choose a Sensible Diet
Choose a healthful diet with a variety of foods containing the nutrients that you need. Your age, gender, size and activity level determine the number of calories that you require daily. A nutritious daily diet includes foods from five food groups. Limit fats, oils, sweets and salt. Choose sensible portion sizes. Avoid empty calorie foods. To learn more about portion sizing and a balanced diet, please see: myplate.gov
Energy Conservation and Mealtime
Try to plan your meals when your strength is optimal. Eat slowly and rest between bites if necessary. When fatigue is a problem later in the day, try eating your main meal earlier. Instead of three larger meals, try eating five or six smaller meals. It can also be helpful to time meals around peak medication times, eating about an hour after taking your medication.
Easier Chewing and Swallowing
Modifying the consistency of food can make it easier for you to get proper nutrition when you are having difficulty with eating and drinking. Prepare foods in a way that makes them soft, tender and easy to chew and swallow. Chop, mash or puree foods. Moisten dry foods with liquid. While eating, take sips of liquid to soften foods in your mouth and help prevent solids from sticking in your throat. The thin consistency of fluids makes them more likely to get aspirated into the lungs because they travel quickly down the throat. Commercial thickeners can be added to liquids to give them a more manageable consistency and reduce this risk.
Body position and your mealtime environment are important. When eating, sit upright in a chair and tilt your head forward. If you continue to have problems with eating over an extended time period, evaluations by a nutritionist and a speech language pathologist may be helpful.
Special Diet Modifications
Occasionally, anticholinergic medicines like Mestinon® may cause cramping and diarrhea. If this is a problem, check with your doctor to see if the dosage can be reduced or if he/she wants to add any medicines to help control the diarrhea. Do not take any over-the-counter antidiarrheal drugs without first consulting with your doctor. If diarrhea persists, avoid foods that aggravate this condition. Aggravating foods include those with a high fat content, greasy foods, spicy foods and dairy products. One exception is yogurt with active cultures, which is beneficial. Avoid otherwise healthy foods with insoluble fiber like raw vegetables, bran, dried or unpeeled fruit, whole grains and popcorn. Coffee, teas and chocolate containing the stimulant caffeine will speed up the action of your intestines, making diarrhea worse, too.
Diarrhea can cause fluid and mineral loss. Choose foods that are mild and easily digestible but are rich in minerals like potassium and sodium (unless you are on a sodium-restricted diet). Try eating smaller amounts of food and liquid throughout the day instead of large meals. Include foods like white rice, applesauce, very ripe bananas, baked or broiled chicken or fish. Light soups with barley or white rice and mild vegetables are nutritious and helpful, too.
When taken over an extended period of time, steroid medicines such as prednisone can cause bone thinning. If you take steroids, it is important to have adequate amounts of calcium and vitamin D in your daily diet. Milk products, cooked dark green leafy vegetables, dried beans, canned sardines or salmon and calcium-fortified juices and cereals are rich in calcium. Talk to your health care provider about recommended dietary allowances (RDAs) for vitamin D and calcium and how much of each you need daily in food and supplements.
Steroid use can also cause fluid retention, so it is important to reduce sodium and increase potassium in your diet. Avoid salt. Cook with salt substitutes or use other spices. Especially avoid smoked and cured meats, canned soups and vegetables, pickled products and salted snacks or any food item that lists salt or sodium as one of its main ingredients.
Balancing a Career with MG
When choosing a career, choose something that you are passionate about and that meets your financial needs. In your job search, it is important to take into account your MG. During job interviews, ask about the workload; ask about repetitive tasks, physicality of the job, or how much speaking is required if you struggle with slurred speech. Ask about opportunities for job shadowing to get a sense of daily tasks and expectations. Prior to accepting the job, consider work schedule and flexibility: when are you strongest and weakest, and will your job accommodate that? Would your job allow you to take a longer lunch break or more frequent breaks to corporate rest in to your daily schedule?
When considering your career, realize that work is always going to be a part of the picture. Be mindful of stress and physical toll on your body. Do your best to eat healthy. Rest is vital. Remember to slow down and balance priorities between work, family and hobbies.
To learn more about employment resources for people with MG, please see here.
In the Workplace: Examples, Accommodations and Your Rights under the ADA
It is important to consider telling your employer if you think you may need some help, now or in the future, so that they can make minor adaptations to the working environment. For example, if your job involves driving, you must notify the DVLA (Driver and Vehicle Licensing Agency) of your MG. Under the Road Traffic Act of 1988, it is an offense if you fail to notify the DVLA about a disability. Or if you need regular breaks, you need to explain to your immediate boss why you may not be at your desk all the time.
We can offer some specific examples as well to help provide more context. A teacher with MG had difficulty meeting the physical demands of her job due to muscle fatigue. After talking with her employer, she received a full-time teaching aide, had supplies/equipment moved closer to her desk, and was allowed several short rest breaks during the day. Another example is a delivery person had difficulty loading and unloading his truck due to lower extremity weakness from MG. He was accommodated with a transfer to a less physically demanding delivery route. An additional example was that an administrator had problems handling stress and had some double vision from MG. He was allowed to take rest breaks, assigned a support person in the workplace, and provided a reader as an accommodation.
There is statutory protection and benefits available if your ability to work is limited, either temporarily or permanently. The Americans with Disabilities Act (ADA) protects qualified individuals from discrimination in employment, public services, transportation, public accommodation and telecommunication. This Act provides equal opportunity to qualified individuals. Under the Act, a qualified individual is defined as one who must have a record of, or be regarded as, having a substantial impairment. A substantial impairment is one that significantly limits or restricts a major life activity such as hearing, seeing, speaking, breathing, performing manual tasks, caring for oneself, learning or walking. If MG has caused a substantial impairment that limits or restricts a major life activity, this law applies to you. Employers must reasonably accommodate the disabilities of qualified applicants or employees unless undue hardship would result. The part of ADA that prohibits job discrimination is enforced by the U.S. Equal Employment Opportunity Commission (EEOC) and State and local civil rights enforcement agencies that work with the commission. As long as you are able to reasonably perform the main tasks of your job, employers are required to make reasonable accommodations for you.
Helpful Accommodation Tips for the Workplace
- Reduce or eliminate physical exertion and workplace stress
- Schedule periodic rest breaks away from the workstation
- Allow a flexible work schedule and flexible use of leave time
- Allow work from home
- Provide a scooter or other mobility aid if walking cannot be reduced
- Provide large print material or screen reading software
- Control glare by adding a glare screen to the computer
- Install proper office lighting
- Allow frequent rest breaks
- Magnify written material using hand/stand/optical magnifiers
- Alternate covering one eye
- Provide speech amplification, speech enhancement, or other communication device
- Use written communication, such as email or fax
- Transfer to a position that does not require a lot of communication
- Allow periodic rest breaks
Fine Motor Impairment:
- Implement ergonomic workstation design
- Provide alternative computer and telephone access
- Provide arm supports
- Provide writing and grip aids
- Provide a page turner and a book holder
- Provide a note taker
Gross Motor Impairment:
- Provide parking close to the worksite
- Install automatic door openers
- Provide proper ergonomics
- Make sure materials and equipment at workstation are within reach
- Move workstation close to other work areas, office equipment, and break rooms
For additional resources, please see here.