June 1, 2021 by Judith Allen Shone
As part of Myasthenia Awareness Month, I share an overview of my early experiences while searching for a diagnosis of my ‘weak knees.’ I have found that it is through stories of our personal challenges that we can best help others searching for diagnosis of their issues, perhaps including myasthenia gravis. Send your brief MG story if you wish to share. Be inspired by your inner storyteller.
Lessons from the Early Years
June 1, 2021 © by Judith Allen Shone,
from My Lifetime with Myasthenia Gravis
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By the time I was in my first year of high school, I had already lived with weak knees from an unidentified cause for over three years. I felt it was abnormal, yet doctors were disguising their bewilderment with cliché assessments without further searching for a cause. I was adjusting to my circumstances and their medical responses. (See Confusion I Experienced)
The weakness in my legs was not constant—it mainly appeared when I walked, seldom when I rested, because, as we know now, rest was necessary. The severity would vary.
But I always had some degree of trouble walking, unsteady, wobbling, an abnormal placing of my feet, that at times felt like lead. By then, I could no longer run. I never connected that it was my leg muscles that were weak. I just knew when I walked that it seemed my knees ‘gave out’ or collapsed. I tried wearing the latest high-heeled shoes like other girls but found I had to stay in flat shoes for security. I could not walk more than a couple of blocks without pain. Walking the many blocks home after school always took time because I would have to rest a few minutes after each block.
Later my arms began to weaken. Even a paperback book was heavy. And, when I was exhausted, I began to slur my words.
I knew something was wrong with me, yet my parents had not been successful in finding a doctor who could say more than “she has growing pains.” I was so self-conscious of my disabilities that I picked up on tricks to cover them up. I’d stand in crowds so I would not stand out. I purposely refrained from being singled out anywhere I had to walk. I realized I could pull myself up while leaning on the railing when climbing stairs. I mastered using an umbrella as a cane when I was unsteady. I discovered I could carry books hanging in a bag because my arms got far too tired otherwise.
I could not participate in PhysEd classes because of physical limitations. I was terrified to go to sports events because bleachers had such steep steps without railings. I learned to stay away from activities that required repetitive or excessive movement: dancing, climbing, hiking, walking. I was living with fatigued muscles then, but doctors could not relate them to a disease they knew.
Over five years from the onset of these undiagnosed disabling behaviors, my eyelids began to droop, and double vision appeared in one eye when I was tired. It was hard to keep up with reading assignments. History class was challenging – I do not know how I passed because I could not read enough. Without considering the danger, I found myself driving with one eye closed so I could focus.
I have since learned drooping eyelids could have been a significant clue to the disease if I had experienced that behavior sooner—but it did not happen earlier.
I never discussed my issues with classmates or in the halls walking with friends. I would duck into the ladies’ room for a break or hang behind at my locker if I needed a rest. I briefly told my best girlfriends during those years. But I felt awkward around others, knowing I was unbalanced as well as unable to walk ‘right.’ I was sure everyone else was just as aware of my deficiencies as I was but being nice not to say anything.
“Sometimes reality is too complex. Stories give it form.”
–Jean Luc Godard
Once I attended a dance ‘with the girls.’ Few seemed to have dates that night. But a tall, handsome boy, older than I was, asked me to dance. I was scared and happy at the same time. I could not dance. I had always wanted to dance with a partner, but knowing my legs would hurt to dance was frightening me. But he was so nice; I wanted to dance with him.
I told him I had a hard time dancing. When he said he would teach me, all my fears melted. I was thrilled, a young girl with a nice boy wanting to dance. We danced slowly. We sat out some. Then we danced some more. It was fun. He made me feel comfortable, but I still could not dance well nor walk any better.
After four more years
Finally, at the end of my freshman year at university, in 1961, after an eight-hour consultation and a half-day of testing, a diagnostician confirmed my case as myasthenia gravis. My long, hopeful wait was over.
‘In my day,’ myasthenia gravis was not just rare, but rarely heard of. It takes time, and keeping up with education, and going to conferences and reading journal reports and personal stories to continue to learn beyond university, plus to educate the up and coming medical profession about a disease that, while ‘around for years,’ only began to be studied increasingly around the 1950-60s.
After diagnosis, I began medication and went on to have a thymectomy. I thought that was it, that I was as well as I was going to be. Over time worked in various careers. I married, had children, grandchildren, and along the way, I experienced what I ‘assumed’ must be remission 20 years after my thymectomy.
The real irony and bafflement of my entire life, (sixty years later) is that I never checked with a doctor to see if that were true, that I was in remission, or just ecstatic. I felt ‘better’ than I’d felt in years, never thinking I had nothing to compare to ‘good, better, best.’
I have no idea now what happened in my life that I never connected with a doctor following my thymectomy. I just took my pills, felt better than I had for years and so that was my life. Life wasn’t perfect, but I asked, “Whose is?” and made the best of it, not expecting more.
During our 50th high school reunion I mentioned myasthenia gravis to several friends. Their response astounded me. They assured me with heartfelt words that they never knew anything was wrong with me, that they had never noticed I could not walk properly. I have asked others I’ve known over the years. Unless I had mentioned MG to them, they might never have known I had it, and it seems for most, if they knew, they seldom thought about it. Most recently, those on social media were in agreement—they could not recall anything like I described.
That was a huge eye-opener. I had been a teen consumed by my disabilities. I had not realized that teenagers were so focused on themselves that they were not tuned in to the others around them. Like many teens, I was self-conscious during those years. The reality was, very few others were paying attention.
The twilight years
Fast forward to the twilight of my life. Covid-19 hit the world. We were locked down, isolated, quarantined, and had to stay inside for over sixteen months. Because I was also caregiving 24/7 for my partner, then in stage 7 Alzheimer’s, social media became my social life over time. I had lots of time to think without the distraction of daily life as we knew it before. I tuned-in to myself during those periods when my mate was sleeping.
At some point during that period, I sensed MG might be coming back to my legs. ‘Weak knees,’ weakness in the leg muscles, always had been my weakest point. I wonder, maybe as a result of ten years of stress caring for a loved one with memory loss, with so much ‘on my mind and my plate,’ that maybe the stress load was too much for me.
At this time in my life, I now know what my disease was and can comfortably share it with anyone, as I feel I must now. But, back then, as a teenager, without a diagnosis, I was embarrassed. I had no one to learn from—few doctors even knew what it was. Thank goodness time is on our side!
Take part in your situation
Over the sixty years since my diagnosis, myasthenia gravis has been growing in recognition…even though it seems it still is not well known; increasing in scientific understanding …yet it still appears so few in the medical profession understand it enough to consider pointing to it for investigation with a patient.
I have noticed so much more information is ‘out there’ to help those in search of understanding their muscle weakness. It gives hope, regardless of for what disease. GO ONLINE AND SEARCH the many sites that were not yet a dream in my day.
I have noticed the many support groups online, on social media, and those mentioned on sites for local areas. We had no such thing as ‘a support group’ in my day. I know now having support is the foundation to feeling confident about your situation. JOIN ONE.
I notice all the caring folks who created societies and organizations, who have come together and put so much effort toward finding a cure for myathenia gravis. They were not there in my day. Bless those who cared enough! Help them any way possible. CONTRIBUTE TO THEIR CAUSE.
My lessons learned are:
- Like the boy who helped me learn to dance, others do accept you where you are. I probably would have had more fun in life if I had not been so embarrassed by my disabilities.
- Friends from so many years were honest with me and let me know that even though I believed they thought something was wrong with me, they assured me they did not remember my disabilities. I seemed to be the only one remembering.
- Go to the doctor to confirm your status. Remember, life might have been better if I could have walked without pain these years. Sadly, I’ll never knew if I was 100% in remission or was I living those next years less than I might have been?
- Discuss with your doctors and if answers are not forthcoming, keep looking and find someone else. I wish I had had Google!
- Take advantage of the internet. Ask questions, do your homework, be firm in what you feel because most physicians, researchers, and writers have never felt what you feel!
- Join a support group online or locally. You will be glad you did.
On one of the MG sites, there was a graphic quote from the charegables: “The hardest part of chronic illness is dealing with all the emotions, and understanding I have limits now.”
While this can be true, I could not help myself, I had to share the wonderful guidance I received from the doctor who finally did diagnose my MG, ad an amazing doctor, after 8 in six years of no success.
His advice to me was that I would likely get to determine what I could and could not do over and over, daily, at the moment, so not to put a mindset of ‘can’t’ about anything. I think it helped me move through the following sixty years with a fairly positive approach…not ignoring the truth, the downs and ups, but being aware that there were always going to be possibilities. I feel fortunate to have been guided toward that outlook .
So now …
you have a sense of this rare, chronic autoimmune neuromuscular disease, Myasthenia Gravis, tell someone else something you have learned.
Let them become familiar with the sound of the name, I’ve heard both: my-us-THEE-nee-uh GRAV-is, or my-us-THEE-nee-uh GRAY-vis.
Let them know the symptoms: grave muscle weakness, slurred speech, droopy eyelids, blurred or double vision, weak body muscles, trouble swallowing or breathing.
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others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.
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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.
Thank you…for making my heart sing!
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Lessons from the Early Years © 2021 Judith Allen Shone
Tatiana Mitrushova and Nikolai Mitrushov
Iris represent ‘wisdom and hope’