Webinar: MyRealWorld MG Study – Nov 12

Posted by myasthenia

Learn about an innovative research study

Webinar: Thursday, November 12

2:00 pm to 3:00 pm Central Time

Photo source: https://myrealworld.com/uk/en/myasthenia-gravis/

Speakers

Katherine Perez

argenx Head, Global Patient Advocacy & Policy

 

Lisa Carfangnini Guererro

MG Patient and Owner of Lake Street Bean, Grayslake IL

 

MyRealWorld MG is an international two-year study that looks at the impact of myasthenia gravis on patients’ lives. We invite you to click the Register Today button to learn more about this innovative project. The study offers a way to share your myasthenia gravis journey to help researchers understand the impact and burden of MG on patients and their families.

The study is sponsored by argenx, a biotechnology company working with patient organizations from 9 countries (US, Japan, Germany, UK, France, Italy, Spain, Canada, Belgium). argenx is inviting MG patients from around the world to participate and share information through the use of the MyRealWorld mobile app. Click here to LEARN MORE.

Please note: Conquer MG is pleased to provide information about current MG research to the MG community. Please note the study is sponsored by argenx, and all webinar content reflects the views of argenx and other panelists. Conquer MG does not endorse this or any other study.

Myasthenia Gravis and Telemedicine

Posted by myasthenia

Rabia Malik

Rabia Malik, MD, Asst. Professor, Rush University Medical Center

Recap: Conquer MG Webinar – August 30, 2020

In mid-March 2020, the U.S. Congress approved emergency use of telehealth services in response to the COVID-19 pandemic. This allows patients to receive medical care from their homes through the use of smartphones, tablets or computers.

Rabia Malik, MD, recently explained to the Conquer MG audience how they can make the most of telemedicine visits with their doctors. Dr. Malik practices at Rush University Medical Center. She is an Assistant Professor, Department of Neurological Sciences; Director, MDA Care Center; and Director, RUMC EMG Lab.

Click to watch the video presentation.

Click here to print a summary of guidance for your telemedicine visit.

Preparing for your video visit

For your visit, you will need:

  • Smart phone or ipad. It should be fully charged. If it’s not charged, make sure it’s connected to a power source. Alternatively, you can use a laptop or desktop computer with camera. However, some apps are not supported on the laptop or desktop, and so the experience may be easier and more efficient on your phone. Be sure to prepare your device in advance.
  • Internet connection
  • Instructions from your healthcare provider’s office
  • Download the app. Your doctor’s office staff will tell you how to download the app onto your device, and how to access your visit. The app is usually free.

Set up needs to happen a few days before your clinic visit, especially if it’s your first time using the app.

  • Sign into your patient portal or app to ensure that you have the correct login information and password. If you have problems getting into the application, now’s the time to troubleshoot.
  • Appointments can be accessed through a link sent via text to your phone or email. You just need to click the link.
  • If you’re using an app, each one is a little different. Usually there is a section in the app that lists your upcoming e-visits. You can go into that section and see details about the visits you have scheduled. When it’s time for your visit, click into it and connect.
  • The clinic staff should be able to help you trouble shoot. If you have questions, call the office and have them work through the app with you.
  • It often helps to have a family member provide tech support and hold the camera/device.

On the day of the visit…

  • Log in 15 minutes prior to your visit.
  • Position yourself in a quiet and private area.
  • Minimize noise, distractions (turn off TV).
  • Make sure the room is well-lit.
  • Avoid eating and drinking, just as you would in a clinic visit.
  • Be patient as you may encounter technical challenges like video freezing, audio lag (It’s also challenging for your doctor!)

Your visit will start like an in-clinic visit.

  • Your neurologist will confirm identifying information such as your name and date of birth.
  • If it’s your first visit be prepared to talk about:
    • A timeline of your symptoms (when did it start, how did it progress?)
    • Medical history (your other risk factors, for instance, stroke, high blood pressure)
    • Family history (we’re looking for certain risk factors, such as another family member who has an autoimmune disease)
    • Social history (where you work, if you live by yourself, history of smoking and alcohol consumption)
    • Current medications (keep a list of all meds you take so we can make sure our records are up to date)
    • Allergies (we want to know if you’re allergic to any medications)

 

Virtual Neurological Exam

This part of the exam is different from an in-person visit. You can take several steps to ensure we get the information needed.

Image of woman centered, facing straight forward, with light source illuminating face and background

Image of woman sitting centered with light source behind her creating dark shadow

Light source and camera position. We will want to be able to see your face clearly. Position yourself to face a light source. A large part of the exam is the strength of your eyes and face, so it needs to be illuminated. The light should not be behind you.

Woman sitting centered, forward facing, in total view

Position your camera so the whole face can be seen. We need to check your face for symmetry, for instance, to see if the eyelid on one side droops more than the other side. A caregiver or family member can positon the camera for you. If you’re by yourself, prop the camera with books or boxes. Get the camera close to your eye level.

The Virtual Exam Components

  • Eye and facial movements can be assessed over a video visit. It’s important that you sit where your face is well-lit, and your camera is positioned so we can get a good view of your full face.
  • Ptosis fluctuations (drooping eyelids) can be assessed as well, as long as the camera is well-positioned.
  • Speech assessment. We will listen for slurred speech and fatigability.
  • Be prepared to walk so your gait can be assessed. If you are at risk for falling, make sure a family member is present to provide support. If you are by yourself, one way to be prepared is to prop the camera on a chair, vertically. (In other words, you’ll need a second station where you can prop up your camera.) The lower level of the camera allows us to see the whole body from head to toe. We can assess how you walk (your gait), plus do a component of the strength exam in the legs.

Mobile device propped straight up by books on chair

View of full body as seen on mobile device propped up by books on chair

  • Vital signs

    – weight, temperature, and blood pressure – can be recorded if you have access to a scale, thermometer, and/or blood pressure cuff on the day of your exam.

 

 

  • Mental status

    will be checked. We’ll ask questions to check your orientation, comprehension, memory and language.

  • The strength exam is limited when you do a virtual exam. When you come to the clinic, your muscle strength is tested by “confrontation.” This means you push against your doctors hands, so it’s your effort against our effort. Your doctor assesses where muscle weakness occurs. In a virtual exam that’s not possible. However, we can get a rough estimate of muscle strength.
    • We can ask you to raise the arms above your head. First, Can you do it? Second, can you sustain it, or is there fatigability with arm elevation?
    • Next we’ll ask you to do slow finger taps, tapping each digit to the thumb one after another. That gives an assessment of how weak the finger muscles are.
    • We can assess strength of the hip muscles by seeing if you can stand up from a chair easily, with arms crossed. That tells whether hip muscles are strong.
    • Similarly, for trunk muscles we see how easily you can get up from a bed.
    • We may have you stand on one leg at a time, or stand on your toes or heels. That gives us a sense of the strength in the leg muscles.
  • The sensory exam is limited as well. But with the help of a caregiver or family member, we can determine if there are any differences in sensation between your left and right sides. That person can rub their hands over each of your arms, and you can report if it’s the same sensation or different. You also can demonstrate whether there is a difference between the upper part of the arms and legs (the proximal) and the lower part (or distal). If there is no one available, we may ask you to draw an imaginary line around the area of numbness.

Typically, sensory symptoms problems are not part of MG. So the more important parts of the exam are the face, strength exam of arms and legs, and speech changes during the interview.

End of your visit

At the end of the visit, be sure to:

  • Ask your questions. Keep your list ready.
  • Summarize the recommendations and plan with your neurologist. For example if you’ve been given a change in medications, make sure you know the amount and schedule change.

Your doctor can e-prescribe your meds, and place orders for lab, bloodwork and imaging studies. Although you may be hesitant to come to the hospital for blood draws and studies, keep in mind there are regulations and precautions in place to prevent you from being exposed to many people in a room. For instance, many places require that you come by appointment to get blood tests. This ensures fewer people are in the waiting room.

 

When is an in-person visit needed?

It’s important for a doctor to see you in person when:

  • You have significant changes in your MG
  • A change in medications is made
  • Detailed examination is needed
  • New patient visit
  • Red flags: swallowing difficulties, feeling short of breath with little activity and neck weakness

Keep in mind, clinics and hospitals are taking special precautions against COVID-19.

  • Mask are required
  • Patients are social distanced in waiting rooms
  • Surfaces are wiped down regularly with disinfectants
  • With each patient, the office will review symptoms of COVID-19
Vector graphic image of covid-19 symptoms

Vector graphic image of covid-19 symptoms

MG Wellness: Myasthenia Gravis and Exercise

Posted by myasthenia

Left: Julie Hossack; Right: Julie Rowin, MD

Recap: Conquer MG Webinar – June 28, 2020

Recently, panelists Julie Rowin, MD, and Julie Hossack discussed the power and possibility of exercise for those who have myasthenia gravis. Dr. Rowin is board certified in neurology, neuromuscular medicine, integrative medicine, and acupuncture. Ms. Hossack is an A.C.E Certified Personal Trainer, ISSN Certified Nutrition Coach and Peak Pilates certified Pilates Instructor.

See their discussion (40 min, including 20 min exercise demonstration).

See Julie Hossack’s exercise demonstration (20 min).

Dr. Rowin and Ms. Hossack answer your MG-related exercise questions in the Myasthenia Gravis Exercise Group on Facebook

Print out this short and handy guide to Start Your Exercise Routine.

 

Let’s talk about MG and exercise – at last!

Dr. Rowin: It’s exciting for the MG community that’s we’re starting to talk about exercise. For a long time the message was to conserve energy, to avoid exacerbating your weakness or fatigue.

We’ve come to recognize that exercise can benefit those who have myasthenia.  It’s good for the immune system, it combats fatigue. Exercise helps gut health, mental clarity, sleep, and mood. It can help to counteract side effects if you’re on prednisone; for instance, exercise can help with weight control, as well as blood pressure and blood sugar management.

Please keep in mind this is not intended to be a substitute for professional medical advice. If you’re having shortness of breath or swallowing difficulties with any exertion, now is not the time to start an exercise routine. In this case, contact your neurologist.

However, it’s been my experience that many people who have myasthenia become stable with treatment. Although there are normal fluctuations with MG and every day is different, if your MG is stable then exercise can be part of your recovery process.

 

Biggest Concern

Dr. Rowin: People who have MG want to get moving again. But there is fear and concern that exercise will make the weakness and fatigue worse. How do you respond to that?

Julie H: You may not think of it this way, but movement that you do in your everyday life is exercise. Every time you sit up to get out of bed you are working your abs. Every time you stand up to get out of a chair you’re using your quads. I hope to help you discover that if you put some planning and goals around those movements, you can slowly progress. That way you can add more activity into your life.

Dr. Rowin: You’re saying that exercise doesn’t have to be something that’s high intensity, or that leaves you exhausted. You can think of it as building on what you do every day.

Julie H: Yes. I’ll add that it should be structured, and thoughtful with a purpose. I put together a small routine that takes about 15 minutes. It’s intended for someone new to exercise, or coming back to exercise after a break or an illness. It will be useful if you’re wondering how to get started.

Some parts of the exercise video might be too challenging, while some might not be challenging enough.   Try to stick with it from being to end. I would welcome hearing from you afterwards through the Myasthenia Gravis and Exercise Group we’ve set up on Facebook.  Let me know if I can help you adjust this program so it’s something that works for you and your body – and it’s something you can stick with. Finally, try to find something with this workout that you’re proud of, happy about, something that you feel you can do. It can even be hey, I’m taking a step. Whatever it is, keep track of it.

Dr. Rowin: In other words, keep track on paper how much you can do. Don’t feel bad if you couldn’t do a particular exercise. Next week you might be able to do one repetition, then two, then more. Julie, I noticed you gave a lot of modifications. That’s really helpful so a person can take it up or down a notch.

 

What’s too much?

Dr. Rowin: We received a number of questions that address the same concern: How do I know what’s enough? What’s too much?

Julie H:  I suggest you recognize what your body is able to accomplish today. Follow along with the video, and write down how many of each exercise you can do. Write it on a calendar or date it in a notebook. Tomorrow try to do same thing. Pay attention to how your body felt, and write that down, also. Once you get up to doing about 10 repetitions, it’s time to move on. Adjust the program, but make sure you start with what feels pretty easy today. Increase your repetitions or add resistance as you go forward.

Muscle soreness or MG fatigue?

Dr. Rowin: Another frequent question is this: “How do I know whether I’m having muscle soreness from the workout, or fatigue from MG?”

Julie H: That’s a little tougher to answer. It is very normal to have muscle soreness. It almost feels like having a bruise in your muscle up to one or two days after doing an exercise. That’s normal. Keep track of that feeling to see whether it subsides over time as you get more conditioned; this will help you know whether you’ve set your goals appropriately.

Dr. Rowin: If you’re weak the day after exercise, and it’s not muscle soreness but power loss, then you need to take it down a notch. I’m asked, “How do I know before I get to that point?” Just start by doing what you know is ok. There is plenty of time to add repetitions or make the exercise more difficult. We’re in this for the long haul.

Julie H:  We’re building stamina and strength for the future. You don’t need to – and won’t – accomplish that in one day. Give yourself time, regardless of what your big goal is.

Dr. Rowin: I see people overdo, and then never exercise again because they feel terrible. Or they don’t try because it’s scary or difficult. I agree, it’s not easy – especially when you have myasthenia. But the rewards in the long run make it more than worth your while.

 

Does age affect my ability to exercise?

Julie H: Age absolutely factors into your ability to exercise. Is there time to improve? Yes. Start with what you know you can do. If you feel your back isn’t giving you the strength you need, then start with a safe position that offers support, and aim for a low level of intensity. Regardless of age, you should still see progress.

 

Will exercise increase my strength and muscle mass even though I have MG?

Dr. Rowin: Yes, it will.  Of course it depends on the severity of your condition. But again, start slowly and gradually and you’ll make progress.

 

Will exercise increase my energy levels?

Dr. Rowin: Fatigue is a major issue with myasthenia, and this is one reason why exercise is so important. It often happens with MG that you get treated and improve, and your strength is better. But the fatigue lingers and just doesn’t improve. Your doctor may look for other causes. One of the biggest culprits is being sedentary. Deconditioning leads to fatigue. Moving will increase your energy levels.

What about golf (or yoga or tai chi or…)?

Julie H: Several people asked about specific sports. Running, weight lifting, golf, tai chi…If there is something you loved to do that’s been put on the back burner, I highly recommend that you work toward that goal. It’s helpful emotionally. Start doing the motions that are specific to that sport. If you want to play golf, start by seeing how that swing feels in your house, then maybe take it to the range. Work on a progression – don’t try to golf 18 holes right away while carrying your bag.

The same is true with running. Start by running a block then walking a block. Record how you feel as you progress. Tai chi, yoga, stretching… tell the instructor that you’re going to stay for 10 minutes to try it out. Try it for a couple weeks, then maybe stay for 15 minutes. Don’t cross anything emphatically off the list until you try to progress back to the activity that you love.

 

Are there exercises for ptosis (drooping eyelids)?

Dr. Rowin: There are no specific exercises to help ptosis. It generally improves as the condition improves for the majority of patients.

 

Is it dangerous to over-exercise?

Dr. Rowin: If you’re in an exacerbation, it’s not a good idea to exercise. If you’re stable, then it’s helpful to gradually introduce exercise. Use your common sense and be safe about it.

Any advice to committing to exercise every day?

Julie H: I suggest you write your exercise plan on your calendar. Start with whatever you feel is a good number of repetitions. Check the days off, or use smiley face stickers. That feedback of physically checking something off a list is very rewarding. Achieving a goal that you’ve worked up to over time will get you to a point where you can exercise more often.

We’ve talked about setting goals, and being accountable. One other thing that can help you commit to exercise on a more regular basis is having a support network. You could work out with a friend virtually on Zoom. You can find encouragement through the Facebook page that we mentioned. I hope you thought of something you are proud of – feel free to share that with the FB group, and with your friends and family. Getting that positive feedback will help you stick with exercise on a regular basis.