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

Myasthenia Gravis flareups

dedicated to raising awareness of Myasthenia Gravis.

Flares

An important possible behavior experienced by those with myasthenia gravis is a flareup.

On June 22, 2021, Rebekah Dorr, on her open community Facebook page, Myasthenia Gravis Unmasked, wrote this about flares. She reminded me that flares were important to mention in Awareness Month.

Rebekah Dorr states:

“Flares are often acute, temporary worsening or increase of symptoms (can be a few specific ones or generalized). Flares can be caused by poor sleep, stress, weather and hormonal changes, medication changes (increase, decrease or discharged) etc.

“They can usually be managed at home with good communication with a skilled provider and what you have learned about your specific symptoms and presentation with time.

“However, respiratory involvement is another matter. Respiratory weakness with a flare should be considered an exacerbation which has the strong potential to lead to crisis and should be taken care of very carefully. Do not brush off this particular symptom. You may be able to manage at home if it’s more mild and you have supportive equipment or rescue meds (like a temporary boost in steroids or changes to mestinon as prescribed by your dr), but moderate and severe symptoms should always get checked out quickly.

“If you ever feel a flare or exacerbation is concerning you and in your gut you know something is wrong, don’t hesitate to get help.

“I know we face a whole lot of crap at the ER and hospitals. A lot of it. And we get scared to go. But I would rather we go and try and fight before it’s too late and we are being rushed in and intubated or worse.”

(c) 2021 Rebekah Dorr

I think it is important to note that, while everyone is different, the Outlook, found on Medical News Today:
“…people with MG can live a life without regular flareups as long as they stick to a regular treatment plan.”


Read more about Rebekah Dorr, and the post she shared here earlier this month, “What is Myasthenia Gravis?”, a pictorial description in words.

A patient since 2011, Rebekah is a passionate advocate for those with MG, who avails herself for those with questions by communicating on/monitoring her Facebook community site. Find out more about this amazing lady!


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

Visit sites for Support

If you are searching for answers for ‘muscle weakness’ symptoms and have reason to believe you might want to talk to your doctor about myasthenia gravis, spend some time online reading comments others have shared. Visit Supporting One Another.


If you have access to Facebook and can find the site, Myasthenia Gravis Unmasked, it will be worth your time to browse through the immense volume of information there. There are noted nearly 15,000 followers— you will find you are not alone.

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.


Seven days – MG flareups (c) Judith Allen Shone

with (C) 2021 Rebekah Dorr her writeup on flares.



In support of the Myasthenia Gravis Insights website, and because I am still a 24/7 caregiver, 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

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.


MG myths we might hear

dedicated to raising awareness of Myasthenia Gravis.

As patients, we are searching for answers. Because myasthenia gravis is a rare disease not all health professionals will be familiar with it. They might have read about MG in school, or even had discussion about it, but not all will have seen a patient with it.

It is, therefore, to the benefit of both patients and doctors, for patients to prepare a list of symptoms and experiences to share with doctor(s), to bring clarity to help those trying to pinpoint a diagnosis, and to reduce possibilities of hearing these myths.

Some myths

Some responses, repeated time and time again, seem to keep raising their head. They have been reported through the years by those eventually diagnosed, including with myasthenia gravis.

I lived this scenario sixty-five years ago.
(See Confusion I Experienced and Lessons from the Early Years)

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.


MG has no pain, so it cannot be myasthenia gravis.”

Myasthenia gravis is a rare disease. Hence, many doctors may never see a patient with MG, let alone talk with one long enough to hear their full story, feel their pains, know what their patient is going through. Those who have myasthenia gravis know pain. Patients can help their doctor by explaining real experiences to add to their knowledge. Help professionals understand by having detailed symptom information and clear descriptions.

“It’s just growing pains

This response from professionals who are unfamiliar with MG, usually relates to patients in their formative years. For unknown reasons, the physician may feel this answer satisfies the quest for ‘why’ the muscle pain, muscle exhaustion. It is helpful if the patient’s description can be as accurate as possible, with experiential evidence, helping those trying to find a diagnosis. If you feel more searching is necessary, keep looking.

“Swollen or inflamed knees”

If the knees are the area of concern, be sure to have experiences that have happened to accompany the visual the doctor will get by seeing your knees. Seeing swollen knees does not reveal the pain or fatigue that you feel. Be ready with detailed explanations of when this happens and maybe where. MG is inconsistent and like a ‘snowflake,’ different every time, each day, for each person. (Thus, it is called the ‘snowflake’ disease.)

“Everyone gets tired

Well, yes, we do. But not in the same way. Certainly, if experiences are explained, the exhaustion associated with myasthenia might be more easily recognized. The ‘tired muscles-rest-activity-tired muscles-rest’ cycle is a hallmark of myasthenia gravis. We could be talking about minutes for a full cycle, or it could extend to after a long walk, depending on the status of the disease that particular day or even particular hour. Muscle fatigue is much different than normal ‘tired.’

“Just wants attention,” or “it’s all in the mind”

Health professionals who have little or no experience with myasthenia gravis might not recognize the symptoms presented initially. When they have no immediate answer, their response could be that it is psychosomatic or imaginary, perhaps ‘to get attention.’ Again, detailed symptoms from the patient helps doctors find answers easier and hopefully, sooner.

“Exercise will make it better”

Exercise, while good in most circumstances, will not help a muscle that does not respond to a message from a nerve. No matter how strong, if the message does not get to the muscle, it will fatigue quickly. For most with MG, exercise becomes a tiring effort. Look for more answers.


We can question — then
help with detailed information

When we hear a myth-type answer, something that does not sound right, check-in with our ‘inner guide’…do we need to question more so better answers can be found? Help your health professional by giving well described information from experiences. Use words that will clearly define the issue being discussed to arrive at meaningful solutions.

As part of our campaign of awareness, we identify commonly known 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.

Before you go…

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

Thank you for your interest and in sharing Myasthenia Gravis.


Read a portion of my story from My Lifetime with Myasthenia Gravis by Judith Allen Shone


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


Eighteen days – myths we might hear (c) 2021 Judith Allen Shone

Iris and peony StudioExquinoxArt
Iris Image by Nika Akin from Pixabay

Iris represents ‘wisdom and hope’



In support of the Myasthenia Gravis Insights website, and because I am still a 24/7 caregiver, 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’

Myasthenia Gravis Awareness Month

May 20, 2021 by Judith Allen Shone

dedicated to raising awareness of Myasthenia Gravis.

My intention on the site is to informally introduce What is Myasthenia Gravis?, a rare, chronic, autoimmune, neuromuscular disease that few people have heard about or know much about. In 2020, there were only an estimated 700,000 cases worldwide, with between 36,000 to 60,ooo estimated in Canada.

I share some personal confusions that I experienced during the six years it took for diagnosis, along with ten curious responses that I have heard over the years. The self-care I practice at nearly 80 is briefly outlined. Only a smidgeon of my sixty-five-year story, that began in 1956 when I first felt the muscle fatigue and weakness, is included. For now, site focus is helping others discover what might be helpful for them.

There are online resources listed, sites with various types of knowledge, some might include history, others research, all to ‘light up’ myasthenia gravis,

The easy navigation and simplicity of finding information on a website menu suits Myasthenia Gravis Insights well.

My wish is that readers will share with friends or family who they know have symptoms and hopefully, if they relate, will encourage them to talk to their family doctor. There is no way to know for sure if someone has MG without doctor investigation and evaluation.

Please bookmark this site. FORWARD this post URL link to someone whom you feel might benefit or might know someone who might benefit. We are raising awareness so others can gather information for discussion with their doctor to help sort out their symptoms.

Periodically, I will send a post, like this post, to remind folks of the disease. Or of any new pages added. Email notice about additions will be sent to those who sign up requesting to be included. Not more than once a month. Add your name here and you will be on the list for this purpose. Thank you.

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

I hope if you have myasthenia gravis you are living well. I hope that if you are searching for answers, you soon find yours.

Thank you for sharing Myasthenia Gravis so we can raise awareness of myasthenia gravis together and hopefully help others find a diagnosis, even if it is another disease.

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

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

THANK YOU. Judy Shone


Myasthenia Gravis Awareness Month (c) 2021 Judith Allen Shone