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

Causes of Myasthenia Gravis

dedicated to raising awareness of Myasthenia Gravis.

Today, let’s learn causes of MG
and what can cause MG to get worse

So we have learned the name myasthenia gravis, how to say it, common symptoms, related terms, learned some myths, how MG feels, who might get MG, and what a crisis is. Now, let’s learn causes.

Cause?

The National Organization for Rare Diseases (NORD) website states amid their extensive section on causes: Myasthenia gravis is caused by an abnormal immune reaction (antibody-mediated autoimmune response) in which the body’s immune defenses (i.e., antibodies) inappropriately attack certain proteins in muscles that receive nerve impulses.

The NORD site also indicates: “…the disorder [MG] appears to occur spontaneously (sporadically) for unknown reasons.”

A cause of MG is complex, and requires the evaluation of a professional health care specialist. If myasthenia gravis has begun to ring a bell as a possible disorder for discussion with your doctor, these links to sites that give far more discussion about ’causes’ might add to your convictions, either way. They are a places to begin.

Causes/Inheritance – MDA
Myasthenia Gravis causes – MGN
What causes MG? –Conquer MG
What causes myasthenia gravis? – NIH


Hereditary?

The Muscular Dystrophy Association website relates that “although MG and other autoimmune diseases are not hereditary, genetic susceptibility does appear to play a role. It seems likely that genetic factors also contribute to the pathogenesis of MG.”


“The U.S. National Library of Medicine website relates: “In most cases, myasthenia gravis is not inherited and occurs in people with no history of the disorder in their family. About 3 to 5 percent of affected individuals have other family members with myasthenia gravis or other autoimmune disorders, but the inheritance pattern is unknown.”


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.

And then sometimes I even forget I have MG until the symptoms raise their head and I remember, “ooh, yes, I have trouble walking. What triggered that?”


What can cause MG to get worse?

There are instances where triggers make MG worse. It is worth researching more than what is here because not all instances relate to every case of MG. Keep your list of what relates to you! Let your doctor know.

  • We know fatigue makes our muscles weaker, but lack of sleep apparently can add to the fatigue as well.
  • As with many illness, stress is named as a trigger for MG fatigue.
  • Humidity has been a serious trigger for me and is on the list of what to monitor.
  • Bright sunlight and extreme temperatures; hot, with humidity, saunas, sunbathing, hot baths or hot showers or hot tubs, or cold.
  • One thing that still triggers drooping eyelids for me is flashing of strobe lights. It is worse with mullti-colored lights, used with a disco ball with mirrors.
  • Exposure to any number of chemicals for lawns, housekeeping or insect sprays. Note which ones and talk to your doctor.
  • Pain and illness can bring on fatigue.

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

** This site is not associated with the MG groups mentioned on this site. We just know MG research cannot go forward without donations/funding.


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

Having these symptoms does not mean you have MG, but they might be an indicator for discussion with your doctor about symptoms.

I am so glad you have become part of the raising awareness campaign. As we learn more we are able to tell others.

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.


Thank you…you make my heart sing!

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


Six days – causes of MG © 2021 Judith Allen Shone

Iris and Peonies – EquinoxStudioArt
Lilacs and Forget-me-nots (original for book cover art)- Tatiana Mitrushova

Iris represent wisdom and hope


In support of this Myasthenia Gravis Insights website, I share my caregiver books. Thank you for checking them out!

For Alzheimer’s, Vascular Dementia, COPD and anxiety spouse-caregiving stories, browse these two books, Accepting the Gift of Caregiving series.

Available to order in paperback, eBook or hardcover from local booksellers, or
online from your favorite site, or Amazon, or Facebook shop or caregiver-books.

Are you in Halton area of Ontario?
Order from Ian at Different Drummer Books in Burlington.

Who might get Myasthenia Gravis

dedicated to raising awareness of Myasthenia Gravis.

The good news is that myasthenia gravis,a rare, chronic, autoimmune, neuromuscular disease, is most likely not going to appear in your body; that, statistically, you will never experience this disease.

But it does seem to appear spontaneously. Thus, the not-so-good news is that we cannot predict, we cannot plan, we cannot forecast which ones of us might get myasthenia gravis. Scientific studies have given us some common threads and markers to help doctors narrow down and categorize so they can diagnose a disease that has many symptoms and that shares a few symptoms with other diseases.

Who might get Myasthenia Gravis?

Myasthenia Gravis is generally known to affect any of the muscles that you control voluntarily, (eyes, mouth throat, limbs) as well as chest muscles, and the diaphragm, which is both a voluntary and involuntary muscle. Historically, the most common symptoms are drooping eyes, double vision, difficulty chewing, choking on food, and abnormal limb muscle weakness.

The Myasthenia Gravis Fact Sheet, (NINDS), of Apr. 27, 2020, relates:“Who gets myasthenia gravis? Myasthenia gravis affects both men and women and occurs across all racial and ethnic groups. It most commonly impacts young adult women (under 40) and older men (over 60), but it can occur at any age, including childhood. Myasthenia gravis is not inherited nor is it contagious.”

  • Myasthenia gravis is not contagious.
  • It is not inherited, although more than one case in a family has been seen.
  • People with MG, under treatment, can have a relatively normal quality of life with normal life expectancy.
  • There is no known cure.
  • 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.
  • Risk factors for myasthenia gravis include having a personal or family history of autoimmune diseases.
  • MG occurs across all racial and ethnic groups

As part of our campaign of awareness, we identify commonly recognized symptoms of myasthenia gravis. We speak of symptoms associated with MG, but the presence of any of these symptoms does not mean that anyone has a specific disorder.

This site does not diagnose nor suggest diagnosis or treatment PLEASE, contact your health provider if you sense unknown symptoms of any kind. We suggest that you discuss symptoms with your personal doctor, your neurologist or your opthamologist.


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.

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.


Twelve days – who might get MG (c) 2021 Judith Allen Shone

Iris image by Tatiana Mitrushova


It is quite a life experience to be associated day-in, day-out with two serious, chronic, diseases: I have Myasthenia Gravis, in and out of remission, and my spouse has Alzheimer’s.

In support of the Myasthenia Gravis Insights website, and because I am still a 24/7 caregiver for my husband with memory loss, I share my caregiver books. Thank you for checking them out! 🌞 You are my sunshine. ~Judith Allen Shone

For Alzheimer’s, Vascular Dementia, COPD and anxiety spouse-caregiving stories, learn about these two books, Accepting the Gift of Caregiving series.

Available to order in paperback, eBook or hardcover from local booksellers, or
online from your favorite site, or Amazon, or Facebook shop 
or caregiver-books. Or in Halton area of Ontario, order from:

Alzheimer Society Halton
4391 Harvester Rd
Burlington, Ontario
289-837-2310

A Different Drummer Books
513 Locust Street
Burlington, Ontario
905-639-0925
diffdrum@mac.com

MG symptoms to recognize

dedicated to raising awareness of Myasthenia Gravis.

In the initial short postings here during June, we have heard the name, we can say the name and know the sound, we even have had an opportunity to read a picture of the pathology of myasthenia gravis from Rebekah Dorr.

Let’s add common symptoms

While this is not an exhaustive list, these are most recognized symptoms frequently associated with myasthenia gravis, as speaking with patients would confirm. They are sometimes referred to as ‘early symptoms.’ Symptoms are not always constant, they might come and go, and most of those who are diagnosed will not have all these symptoms.

– Abnormal, weak or fatigued voluntary muscles, notably arms/legs and hands/fingers
– Difficulty walking/standing
– Loss of balance/unstable gait
– Fatigue
– Drooping eyelids
– Double or blurred vision
– Slurred speech
– Hoarse voice
– Weakness in chewing
– Difficulty swallowing
– Facial drooping/expressions
– Weak neck
– Shortness of breath
– Difficulty breathing

To learn more about symptoms see the list of sites on Resources for MG page with links to more information.

Contact the Myasthenia Gravis Society, in the US, for further help in recognizing what might be symptoms for discussion with your doctor.


As part of our campaign of awareness, we identify commonly recognized symptoms of myasthenia gravis. We speak of symptoms associated with myasthenia gravis, BUT the presence of any of these symptoms does not mean that anyone has a specific disorder. This site does not diagnose nor suggest diagnosis or treatment

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.

Always discuss with your doctor(s) and work with them to determine your condition and your best way forward.

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

Each day, do something to make others smile and your heart sing!

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


Twenty-one days- symptoms to recognize © 2021 Judith Allen Shone
Iris from ElenaslataArtDesign
Lavender from EquinoxStudioArt

Iris represent wisdom and hope

A story from one with MG

dedicated to raising awareness of Myasthenia Gravis.

When we introduce Myasthenia Gravis, people generally follow with, “what is that?”

And our standard answer is, “It means grave muscle weakness and is a rare, chronic, autoimmune neuromuscular disorder for which there is no cure.

For those who are ready to learn more, today’s feature article by Rebekah Dorr, an MG patient since 2011, offers a description that reads like a picture. See more about Rebekah following her article.

Thank you, Rebekah. It is indeed a pleasure to share your words here.

See also our site pages What is Myasthenia Gravis and Resources with links to sites with even more detailed descriptions.

We speak on this site of symptoms associated with myasthenia gravis BUT the presence of any of these symptoms does not mean that you have any specific disorder. This site does not diagnose nor suggest diagnosis. But, as part of our campaign of awareness, we identify known symptoms of myasthenia gravis. Always talk with your doctor(s) and work with them determine your situation.


What is Myasthenia Gravis?

By guest author, Rebekah Dorr

Our brain sends a signal to talk to our muscles through a chemical messenger called acetylcholine. This messenger travels down our nerves to a junction called the neuromuscular junction that sits between our nerve fibers and muscles. On specific muscles, sit acetylcholine receptors waiting to “catch” the chemical messenger so that the muscles can contract. Think of the messenger and receptor sites like keys in a key hole. They lock and turn and muscle contraction ignites.

In MG, the acetylcholine receptors are damaged by rogue antibodies who think they are helping our bodies but have ended up with incorrect blueprints. Our immune system deviates from it’s normal job and begins intercepting the chemical messenger and blocking and destroying the receptors. Our bodies end up becoming weak without the needed signals and “ignition” to begin contraction. So all our muscles know how to do is stay relaxed and use the little signal they can.

The more a patient moves, the more demand for the messenger acetylcholine that is sent to continue muscle contraction and the more our immune system sends antibodies to attack, leaving us with muscles that want to contract and cannot, making us tired and weak.

There are many things that can make this process worse too. The wrong meds can also block our messengers and make us weak. Heat, stress, thyroid disease, menstrual cycles, other autoimmune diseases and more all contribute in various ways.

For some patients, MG only affects their eyes. They can get double and/or blurry vision and drooping eyelids. Sometimes their extraocular muscles around the eyes get weak too and can cause eyes that don’t stay aligned etc. Headaches are common with vision issues in MG and the quality of life is impacted.

For other patients, MG progresses to other parts of their body. Some have it in their neck, jaw, tongue, throat, and vocal chords. Others may see it in their arms, legs and hands. Many will have it in all of these places or different combinations of it. It can also move around and affect different combinations of these muscles. The most difficult and life threatening impact is when MG attacks a person’s diaphragm causing respiratory distress and in some cases, crisis.

Patients can struggle to chew and swallow food and medications, play with and care for their children, consistently work at basic hygiene like showering every day, cooking, driving, singing, gardening and so much more. It will impact their relationships, their hobbies, their interaction with the medical world and society, their careers, their mental and emotional health and more. All patients have altered quality of life and some have it more mildly and some severe. It spans a wide range of symptoms, responses to treatment and prognosis.

Over time, the impact can quietly take its toll without you ever seeing it.

Yes, we are brave and we push on. You may see us laughing, posting pictures and even going out once in a while. But don’t doubt our struggle. Medicines can only go so far and they have their own symptoms we must cope with, on top of being believed, treated and supported in the midst of something that changed our whole world.”

Rebekah Dorr

What is Myasthenia Gravis?
Copyright© June 1, 2021 Rebekah Dorr
Original post on Facebook, Myasthenia Gravis Unmasked,
Used here with permission.


About Rebekah

I am so grateful that Rebekah Dorr, who, has lived with myasthenia gravis since 2011 when she was “…thrust into the new world of rare disease…,” is sharing her words here, with us.

With her wealth of knowledge, “learned as I went, out of sheer necessity,” Rebekah is a dedicated advocate on behalf of so many, fighting the stigma of MG.

Her determined ongoing efforts with her Foundation, her Facebook group and her blog, as well as continued conversations with those who want to know more, are evidence of her focused passion. I cannot say ‘tireless’ because those with myasthenia still get fatigued!

This dynamo of enthusiasm for finding a myasthenia gravis cure has been working as Founder, Director and CEO, running her non-profit Myasthenia Gravis Hope Foundation since early 2017.

She writes, “It is the mission of the MG Hope Foundation to be the voice of our patients, to focus on bridging the gap between patient needs and clinical interaction, create positive clinical partnerships, to bring advocacy and education to the forefront and to engage in the arts to help foster awareness and challenge the stigmas faced by the growing Myasthenic community today.”

She gives untold hours to others through conversation, making videos, and responding through the Facebook group, Myasthenia Gravis Unmasked, where she is Founder, owner and chief communicator with a community listing over 14,000 followers.

Their ‘About’ statement reads, “Here, we focus on clinical education and support while offering free clinical advocacy from a globally experienced advocate. Here, you become family”

As if that were not enough, Rebekah has written her blog, MGHope -Myasthenia Gravis since 2016, sharing, educating and clarifying myasthenia gravis issues while advocating/fighting to bring attention to the need for more studies, more doctor understanding, more clinical listening, all to help discover a cure for the devastating disease, myasthenia gravis.

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.

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

Thank you, Rebekah…you’ve made my heart sing!

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


Twenty-four days – hear from one with MG (c) 2021 Judith Allen Shone

Flower art credit: Nicolai Mitrushov.

Iris represents ‘wisdom and hope’