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.

Sept 30 Webinar: Telemedicine and Myasthenia Gravis

Posted by myasthenia

Join us for this informative Webinar and Q&A Session

Wednesday, September 30, 2020

2:00pm to 2:45pm, Central time

(3pm Eastern, 1pm Mountain, 12pm Pacific)

Rabia Malik

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

Speaker – Rabia Malik, MD

Dr. Malik is an Assistant Professor in the Department of Neurological Sciences at Rush University Medical Center. She is the Director of both the MDA Care Center and RUMC EMG Lab.

In March 2020, in response to the COVID-19 pandemic, the US Congress eased restrictions and allowed Medicare to cover telehealth services. This allows patients to get medical care from the comfort of their homes.

As telehealth services expand, it is important for us to get comfortable with using virtual care.

In this webinar, Rabia Malik, MD, provides guidance to make the most of telemedicine visits – when you meet with your doctor or other health care provider via video, using your smartphone, tablet, or computer camera to communicate.

Click the green Register button to sign up for the webinar “Telemedicine and MG.” Can’t attend? Register and we’ll send a link after the session.

 

Thank You, Sponsors!

Participating Sponsors

 

MG Wellness: Meditative Breathing

Posted by myasthenia

Left: Jill Crockett, Molcintah Yoga Studio, Right: Julie Rowin, MD

 

RECAP: Conquer MG Webinar – August 19, 2020

Julie Rowin, MD, teamed up with yoga instructor Jill Crockett to discuss the powerful tool of meditative breathing. Dr. Rowin is board certified in neurology, neuromuscular medicine, integrative medicine, and acupuncture. Ms. Crockett owns the yoga studio Molcintah, in Downers Grove, Illinois.

See the VIDEO.

Dr. Rowin: Did you ever catch yourself holding your breath during a stressful situation? Or have you noticed the relaxing and focusing benefits of taking a deep breath?

We invite you to learn more about this as we discuss meditative breathing techniques. This practice can help calm the mind, balance stress hormones, and improve lung capacity.

First, please keep in mind this is not intended to be a substitute for professional medical advice. If you’re having significant shortness of breath, especially at rest, now is not the time to do meditative breathing exercises. In this case, contact your neurologist.

What is “meditative breathing”?

Jill C:  In its simplest form, it’s being aware of your breathing as it is – focusing your attention on the breath without doing anything to change it. We use this tool to focus the mind during meditation practices. We also can intentionally change the pattern of breath to create desired physiological, mental, emotional, and even spiritual changes. In this case we continue to be mindful even as the breathing pattern is altered.

 

Calmness that can ease anxiety, depression, and pain

Dr. Rowin: In some cases, people who have MG may be outside the danger zone of crisis but continue to have a feeling of shallow breathing that is associated with an anxious or panicky feeling. This practice can help these symptoms because it has a calming benefit, correct?

Jill C: Yes. Using mindful breathing – 3-part breath – to shift from shallow breathing to deep belly breathing – takes practice. But it can have an almost immediate benefit.

If you think of anxiety on a scale of 1 to 10, with 1 being no anxiety and 10 being a panic attack, you might not want to focus on breathing if you’re at an 8-9-10 level. There’s no harm in trying; but it may be frustrating because you can’t manage your state of mind. However, focusing on belly breathing can help you manage a moderate level of anxiety. It can help with depression. If we’re in pain, our anxiety increases which in turn can increase the pain. This tool can help interrupt that cycle.

Relaxation hooked me in

Dr. Rowin:  I first learned meditative breathing in a yoga class. I thought, “Wow, I never felt this relaxed.” That hooked me in. Then I started using it at work before a stressful meeting or presentation, sometimes in an elevator, anywhere I had a short break. I came to realize that if I could control my breath, I could better control my mind – the direction my thoughts take. I’m a huge proponent of these techniques, especially for anyone on a path to optimal wellness.

Jill C:  Meditative breathing is a great tool to slow down the thinking mind, stop the monkey-mind we all live with. Often we think we have no control over what’s happening in our lives. But this practice teaches us we don’t have to be at the mercy of our thoughts.

 

3-Part breathing demonstration

Jill C: To get started, you’ll want to take a seated position, where you’re comfortable and your back is supported. My approach has you inhaling and exhaling through your nose. If your nose is stuffy, then just breathe through your mouth.  If you feel lightheaded or dizzy, then stop.

Your Questions Answered

Q: What do you suggest for an individual who is not in MG crisis, but feels his/her breath is shallow?

Jill C: Go back to 3-part breath wherever you are. Feel the belly rise, become aware of it. Often the awareness will help you breathe deeper. It takes practice.

 

Q: I’ve tried breathing exercises in the past but felt very tired. What do you suggest?

Jill C: It could be you’ve become very relaxed, and have let go of a lot of stress. Make sure you do a complete inhale and exhale, with both the inhale and exhale in equal length.

Dr. Rowin: Sometimes you are over-fatigued; when you get to a point of relaxation you fall asleep because you’re tired. In fact, meditative breathing can be a valuable tool to help you get to sleep.

Q: When is a good time of day for this practice? For how long?  

Jill C: Morning or evening are ideal. When you’re just out of bed – before you get caught up with your to-do list – this practice can put you in a good frame of mind for the day. At night it’s a great way to decompress, to slow things down and prepare yourself for sleep. This might be especially useful if you have trouble falling asleep.

Regarding time, set a reasonable goal. Start with two minutes. Set a timer so you don’t have to watch the clock. See how it feels. Over time you can gradually increase your practice, perhaps to 15 minutes.

 

Q: Can you hurt your lungs if you take breathing to an extreme?

Dr. Rowin: Deep breathing alters your heart rate and blood pressure.  If you take deep breathing to an extreme, you can even pass out. We’re advocating a slow mindful meditative breath, and there should be no adverse side effects to you.

Jill C: You don’t want to fill the lungs to the point where you feel like you’re going to burst. It should be a comfortable sensation of fullness – whatever that means to you. Hopefully that will change over time.

 

Q: Can carrying excess weight on your belly get in the way of your ability to breathe effectively?  

Dr. Rowin: The short answer is yes. Excess weight can keep the diaphragm from fully expanding, which can lead to shortness of breath and fatigue. Sometimes itis difficult to sort out how much shortness of breath is due to excess weight and how much is due to myasthenia gravis.

 

Q: What are basic meditation techniques?

Jill C: Meditation can naturally evolve from the meditative breathing. If you sit long enough with inhale and exhale counting, you might find the counting drops away and you’re left in a very relaxed state with just an awareness of breath. What a great place to end up.

To practice meditation, you can use the counting technique shown in the video. Or you can simply maintain your awareness of breath as it occurs naturally.

 

Find a chair, or couch, or even your bed, someplace that feels calm, where distraction is minimized, and where your back can be supported. Sitting up is preferred, so you don’t fall asleep especially at first.

Aim for the same time of day, and the same location so you can associate that spot with a calm state. It will be easier to get to a state of relaxation the next time.

Next…

Put your feet flat on the floor (or bed); you want to feel grounded. Palms or arms should be relaxed alongside the body.

Close the eyes to minimize the distractions. Keep the awareness internal. Once you’ve established your comfortable seat, you’re going to do your very best to be still.

Bring your awareness to the sensation of breath, perhaps the sensation of the inhale and exhale on the upper lip or the chest lowering and rising, and just observe it.

When you first start your mediation practice you’ll be bombarded by thoughts. This is where the work comes in. As you get distracted by a thought, acknowledge it – oh, I’m thinking about the laundry again – and redirect your thought back to the sensation of breath. This will happen over and over.

If you’re still long enough, practicing your meditative breath, the thoughts will start to calm down all by themselves.

 

Q: Can you suggest other resources? 

Jill C: Two popular apps you can download are “Calm” and “Headspace.” You also can find many guided meditations online. Find a voice that’s pleasing to you. Build a library so you can alternate.

 

The difference is profound

Dr. Rowin: I’ve had patients say “I can’t meditate” because their minds are racing. But it’s so worth putting in the time to learn it. You’ll notice the difference in your life, relationships, and in your decision making.

Jill C: I’ve even noticed that it helps in my thinking. At one point I was reading and rereading the same complex text. I stopped to meditate. When I picked up the book afterward, it was so much easier to understand.

Some days will be better than others. Don’t give up. The proof is in the doing.

Dr. Rowin: Who doesn’t have two minutes?!

An Important Note

The information presented here and in the meditative breathing video is not intended or implied to be a substitute for professional medical advice. All content is for general information purposes only. Individual results may vary.

Always speak to your physician before making any lifestyle changes.

 

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