Walking in someone else’s shoes

dedicated to raising awareness of Myasthenia Gravis.

Many of us have heard the expression, “Before you judge, walk a mile in another man’s shoes.” Those words might apply here.

Back in June, when I first posted How Myasthenia Gravis Feels, I wondered if anyone would want to try this little exercise? I never added it to that page. So here, two months later, we have it. Maybe you can experience a little of how it might feel being the one with MG.

Spend thirty minutes walking in my shoes.

If we can walk in someone else’s shoes for a period of time, we sometimes will come to understand them with compassion and patience.

So, do you want to try that? …just for thirty minutes … turn on a timer after you are set up! Here you go.

Put masking tape, or a patch of some kind, over one eye so it will not open and so you cannot see out of that eye. It only has to hold for thirty minutes. If possible, tape the other eye half way shut. You will see out of it, but not clearly.

Now, continue with what you were doing…cooking, perhaps, or reading or shopping? Carry on with life knowing you cannot change the eye’s ability to stay open, so you accept it. After you rest your eyes for an undetermined period, the eyelids may open on their own.

This may be all some with MG experience at first. For others, this disability may come on later during their time with the disease. For me, my sight began to blur and my eyelids began to droop five years after onset of the disease, but prior to diagnosis.

If you wish, while the eyes are taped, tie one hand behind your back. Consider your physical capabilities are curtailed by weakness and all you can use is one arm and hand. A book is too heavy to pick up, an empty shoulder bag may seem too heavy to carry.

How will you feel asking someone to help you do tasks you want or need to do?
How will you feel admitting you can’t do the things you know others can do all the time. MG can impact in psychological as well as physical ways. I imagine you might become exhausted doing what you were formerly doing before the thirty minutes began. You might feel a need to rest. Carry on.

After thirty minutes, remove the tape from your eyes and untie your arm.

The difference, of course, is those with MG cannot remove the tape from their eyes or untie their arms or legs. Their weakness goes on, and on, and on, hopefully with periods of rest between.

You have just experienced a similar sensation to MG. Of course, it cannot be the identical feeling, but you might now understand how those with involuntary weakness are struggling, day after day, to do what many others take for granted, without a first or second thought.

My wish is that this wee exercise might help those who want to know, develop a compassion for those with diseases, who might seem different in some way, for those who, not by choice, are living in situations unlike their own. I hope you notice a connection evolves when we try to “walk in someone else’s shoes, ” an empathy that helps us relate to one another in the family of humans.
Thank you taking the time to walk in my shoes. ❤️

If you found titles in the list in the right column that might increase your MG knowledge, take time to read them now. If you know someone who might benefit from reading or learning from the awareness topics on this site, don’t miss an opportunity to give/send them the blog site link, Myasthenia-Gravis-Insights.com. Thank you for being part of raising awareness of Myasthenia Gravis.


Walking in someone else’s shoes (c) 2021 Judith Allen Shone

Art:
Butterfies 1,2. Tatiana Mitrushiva @Mitrushova on etsy
Butterfly 3. Image by JL G from Pixabay

Recap of Myasthenia Gravis

dedicated to raising awareness of Myasthenia Gravis.

We have been talking a lot about myasthenia gravis!

What have we learned?

Thank you for becoming aware of MG!

We have explored the rare, chronic autoimmune neuromuscular disorder called myasthenia gravis with the intention of raising awareness.

Maybe this recap will help refresh what we’ve read in the posts, listed in right side column.

So, what have we learned?

The main focus throughout the month was to tell one person one thing that we learned about myasthenia gravis. …there will always be time to learn and share about this debilitating disease!

Recap of Myasthenia Gravis Awareness Month
– in order of appearance –

June has provided us with an opportunity to raise awareness of myasthenia gravis, but we can now continue to learn and research and study and understand this debilitating disease, which most times comes by surprise and stays for a lifetime.

Awareness

Getting us started, we learned that in 2020, there were an estimated 500,000-700,000 cases of myasthenia gravis worldwide, with the frequency number used 20/100,000 of population, per Medlineplus.gov. While it may be rare, for those diagnosed with it, MG is life changing —forever.


Click to read more

Children can read about MG

I am so glad Jenny Coffey wrote (and illustrated) I’m Still Me: My Life with MG about her childhood “adventure” with MG. I find the perspective so positive, so filled with optimism, a tone that will transfer when reading to children, as well as when children read to themselves.


Tell One Person about MG

Tell one person, start a ripple about myasthenia gravis. Say it:
my-us-THEE-nee-uh GRAV-is, (GRAY-vis) – myasthenia gravis.

Your words will expand and an awakening will begin…those ripples will become waves of knowledge and an ‘aha’ moment for someone.

That’s what awareness can do!


Our Myasthenia Gravis story counts.

Are you a caregiver, a patient, a physician, or anyone who has had an experience in the world of myasthenia gravis? Consider sharing few moments, perhaps a few paragraphs, from a true story, a comment about a situation, an episode that was not expected…something that could help someone else. Something we all can learn from. Send by email and we will post it.


A Story from one with MG

For those who are ready to learn more, today’s featured article by Rebekah Dorr offers a description of Myasthenia Gravis that reads like a picture. Herself an MG patient since 2011, Rebekah is amazingly passionate about caring about those with MG. She shares information and communicates to encourage them through her Myasthenia Gravis Unmasked Facebook site.

Read Rebekah’s story on this page. An incredible lady!


MG Symptoms to recognize

Among symptoms most frequently associated with myasthenia gravis are drooping eyelids, double vision, weak arm and leg muscles, difficulty chewing, and shortness of breath.

This is not an exhaustive list, but review it on the page where far more are listed. Speaking with many patients, they would confirm these as ‘early symptoms.’


Myths we might hear

Remember, this is true: Myasthenia Gravis is a rare, very complex, disease and there are other diseases that mimic part of it. Therefore, it may take time for conclusive diagnosis! But having good symptom experiences to report is helpful to physicians so they can avoid referencing myths—that are likely not true, such as:

  • MG has no pain
  • Only growing pains
  • Inflamed knees
  • Everyone gets tired
  • Just wants attention
  • Exercise will make it better

Myasthenia Gravis terminology

When talking about myasthenia gravis it helps to know the vocabulary, the terms used by others, the words recognized by doctors that trigger their thinking in certain ways.

We can contribute to our own health through understanding if we are somewhat aware of what words mean.


How myasthenia gravis feels

…It is a bizarre feeling to be normal one moment and within seconds you feel your body has rejected you. Yet, in a way, it has. The muscles do not get the message from the brain and the effort to try to move anyway is too fatiguing….


Who might get MG

The disease seems to be able to strike anyone at any age, including children. MG is more frequently seen in women aged 20 to 30, and men aged 50 and older. Men over 60 and women under 40 are at higher risk.


Myasthenic crisis

Myasthenic crisis is an emergency.

Myasthenic crisis happens when the respiratory muscles become too weak to move enough air in and out of the lungs. An emergency situation exists. Such a situation could necessitate a ventilator to help with breathing.


Myasthenia Gravis flareups

Flares.

An important possible behavior experienced by those with myasthenia gravis is a flareup… “…often an acute, temporary worsening or increase of symptoms…”


Causes of Myasthenia Gravis

Cause? Hereditary? Can MG get worse?

Myasthenia gravis is inconsistent, called the ‘snowflake disease,’ different with each person, not to mention the overlap in symptoms with other diseases, making it hard to diagnose. Keep checking with the numerous websites to add to your knowledge.


Prepare for appointment

Listen when Myasthenia Gravis speaks.’

Prepare for your doctor appointment with meaningful data to be able to be your own advocate as much as possible.


LOOKING FOR THE COMMENT SECTIONS? Click titles of blog articles or list on right side and you will go to each post separately, where comment section is at the bottom. Thank you.


!! This is an awareness site only. !!
No diagnosis or treatment suggestions. Mainly, it is support and links for those who are searching for ‘why they have weak muscles.’


Watch our right side bar to see most recent posts about many aspects of Myasthenia Gravis.

Please, SHARE THIS SITE ...
others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.

Want to walk for,
or donate Canada to,
Myasthenia Gravis Society of Canada?
Visit Step Up for MG Fit or Press Release


Recap of Myasthenia Gravis © 2021 Judith Allen Shone

How Myasthenia Gravis feels

dedicated to raising awareness of Myasthenia Gravis.

How does MG feel?

It is difficult to explain myasthenia gravis to someone who has never had it. Even patients will confirm, despite living with it continually, they have difficulty when discussing with health professionals. Finding words to accurately describe how something feels can become baffling, and those feelings transformed into words, many times, tend to seem inadequate.

Because it is a ‘snowflake’ disease, each person will have different responses, reactions, reports, for different muscles involved. So the words chosen are important.

Simply, we understand that muscles respond to a message from the brain through the nervous system. That message transfers from the neuron to the muscle cell through the the neural junction, the synapse. If the transfer does not take place, the action requested in the message coming from the brain will not occur.

I have had Myasthenia Gravis since 1956 and here will relate how it has felt by way of relating what happened to me. It is a bizarre feeling to be normal one moment and within seconds you feel your body has rejected you. Yet, in a way, it has. The muscles do not get the message from the brain and the effort to try to move anyway is too fatiguing. The following are examples of what muscles might be affected and how it might feelfrom my experiences.

Limb muscles

(1) You are walking normally, and then, without warning, some part of your leg muscles feel weak, you might even feel leg or hip-area ‘pain’ in your effort to move your legs. They can no longer carry you or hold you up. You feel their strength ‘seem to drain.’ You must sit or rest. You cannot say…”just one more step”…there is not one more step—your leg muscles are fatigued to their limit. You fall if you go on because even though the muscles are strong, those muscles have not received the message from the brain to move, to activate. When you try to go on, you will collapse. The ‘pain’ of the failed struggle adds to the fatigue.

(2) You are carrying a book, perhaps a coffee table book of photos. It only weighs about four pounds. On the way to the table, your arms no longer can hold it, your hands release because they have no power, ‘no strength left,’ to hold the book, the arm muscles cannot hold up against the weight of it—the book feels like it weighs a ton as it slides from your arms to the floor. You do not have strength left to pick it up, until your arm and hand muscles rest.

Eyelid muscles

(3) You are reading and your eyelids seem to gradually fall closed on their own, without your prompting. But they don’t respond to your ‘brain asking’ them to remain open. It is not similar to falling asleep, because you are still awake, just your eyelids want to close.

Because they do not open ‘on command’ from the brain, you may feel you want to tape them open; some patients do. You can see through your eyes but the muscles of the eyelids are weak and will not keep the lids open without rest. You cannot read with closed eyes. After an unspecified amount of rest, the lids will respond to the brain message and open again.

Other muscles will react similarly.

The muscles of the throat, eyes, mouth, limbs, as well as chest muscles, and the diaphragm, which is both voluntary and involuntary will respond in similar fashion if impacted by MG. These examples are just to give a sense of the helpless feeling for those who have never had MG. If you read comments on various Facebook MG sites, you will learn more how MG feels from those experiencing it.

Want to try Walking in my shoes?

(Added August 28, 2021- jas)

We’ve heard the age-old idiom, “Walk a mile in another man’s shoes.” The words apply here. If we can walk in someone else’s shoes for a period of time, we sometimes will come to understand them with compassion and patience.

So, do you want to try that? …just for thirty minutes … turn on a timer after you are set up! Here you go.

Put masking tape, or a patch of some kind, over one eye so it will not open and so you cannot see out of that eye. It only has to hold for thirty minutes. If possible, tape the other eye half way shut. You will see out of it, but not clearly.

Now, continue with what you were doing…cooking, perhaps, or reading or shopping? Carry on with life knowing you cannot change the eye’s ability to stay open, so you accept it. After you rest your eyes for an undetermined period, the eyelids may open on their own.

This may be all some with MG experience at first. For others, this disability may come on later during their time with the disease. For me, it was five years before my eyes were involved, but prior to diagnosis.

If you wish, while the eyes are taped, tie one hand behind your back. Consider your physical capabilities are curtailed by weakness and all you can use is one arm and hand. A book is too heavy to pick up, an empty shoulder bag may seem too heavy to carry. I imagine you will become exhausted doing what you were formerly doing before the thirty minutes began. You might ask to rest. Carry on.

After you have been thirty minutes, remove the tape from your eyes and untie your arm.

The difference, of course, is those with MG cannot remove the tape from their eyes or untie their arms or legs. Their weakness goes on, and on, and on, hopefully with periods of rest between.

You have just experienced a sensation similar to MG. I hope it helps you understand how those with uncontrollable weakness are struggling to do what many others take for granted.

Thank you for taking the time to connect with compassion.

The Myasthenia Gravis Foundation of America also offers a way to simulate how MG might feel.

The pdf file, “The MG Experience” © 2020 Rebecca Molitoris (May 12, 2020), is presented by the Myasthenia Gravis Foundation of America on their website. The activities, descriptions and pictures in their presentation are offered with the expectation that others who do not have myasthenia gravis can experience what it might feel like for those who do have MG.

NOTE: All activities might not be necessary to get the idea of how it feels, but PLEASE READ ALL THE INSTRUCTIONS on the initial slides in their presentation to understand.

NOTE: This MGFA kit shall not be used or duplicated for personal profit or gain. All rights reserved © Rebecca Molitoris 2020


Questions?

Do you have questions about myasthenia gravis? Are you looking for more information? You can ask questions in the comments section below and I will get back to you, or you can contact either of the two organizations on the right column for more options, or visit the Resources for MG page for many mor options.


Watch our right side bar to see most recent posts about many aspects of Myasthenia Gravis.

Share this site to help let others become familiar with myasthenia gravis. Thank you.

LOOKING FOR THE COMMENT SECTIONS? Click titles of blog articles and you will go to each post separately, where comment section is at the bottom. Thank you.


How Myasthenia Gravis feels (c) 2021 Judith Allen Shone

Artwork from Tatiana Mitrushova. MitrushovaCliipArt on Etsy.

Iris represents wisdom and hope.
The hummingbird is a symbol of joy and happiness. Its colorful appearance brings good luck and positive energy to our lives.