Myasthenia gravis plays tricks with his vision, but not his sense of humor

This post was found on the Neurology Now website. I don't think that Denny will mind that I shared it at MyastheniaGravisBlog.com

By Denny Fernald
Retired Professor, University of North Carolina

Soon after I first developed symptoms of myasthenia gravis (MG), I needed to renew my driver's license, which required an eye exam. Since my symptoms included seeing double and droopy eyelids, the exam was nearly impossible. I ended up squinting one eye while holding the
other eyelid open to see half the letters, then quickly reversing the lids and fingers to read the other half. After several tries, I mastered the technique well enough to prove to the examiner that my eyes were road-worthy. I renewed my license, and promptly stumbled down the stairs to the parking lot like Mr. Magoo. (My vision problems are now controlled by medication, so I'm happy to report that I don't drive like the myopic Mr. Magoo.)

I was officially diagnosed with MG at age 60 after a lifetime of excellent health. The condition causes weakness in many different muscle groups, and for me it began in the eyes.When I was still teaching psychology at the University of North Carolina, my unpredictable eye problems would surprise me. Sometimes, for instance, during a large lecture, the class would suddenly seem doubled in size. Unfortunately, the university refused to pay me twice as much for this increased enrollment.

To control my eye problems, my neurologist prescribed Mestinon (pyridostigmine), a drug commonly used to treat weakness in patients with MG. Within 30 minutes of taking the first pill, my droopy eyelids were markedly improved.Over the years, I have had to change drugs, dosages, and my diet, cutting out alcohol and high-fiber foods due to side effects from my medications, but I eventually adjusted to my disease. Now we have a tolerable, if not blissful, relationship. And I try to have fun with it.

 Once, my wife was telling a neurology resident that one of my meds occasionally causes sudden emotional outbursts.“WHAT DO YOU MEAN BY THAT?” I screamed. “I NEVER GET UPSET!”Shocked, the frightened young doctor started to call for emergency intervention. When my wife and I started laughing, the neurologist slowly recovered his wits and begrudgingly smiled at my sick sense of humor.

I also had fun with the eye patches I wore to mitigate my double vision. At first I used skin-colored patches, thinking beige would look more discreet than black, but people would stare, wondering about the blank spot on one side of my face. When I switched to a black patch, I got lots of comments about pirates. In fact, at a grand dinner party my wife and I attended, my jaunty, pirate-like appearance impressed one female party goer so much that as soon as my wife left for the restroom, she approached me to dance. I basked briefly in the role of dashing dance partner.

Normally, though, my eye problems make me look anything but dashing. More often, they make me look much older than my age. Once, while volunteering at a soup kitchen, I walked to the front of the long line of clients to help in the administrative office, and a homeless person awaiting service called out, “Hey, old man, go to the back of the line like everyone else!” I wish I could say I smiled when I heard this, but sometimes my condition makes my mouth, face, and neck droop, which makes a full smile difficult.

I may not always be able to smile, but having supportive friends, family, and a faith community has helped me laugh, in spite of the inconvenience of this nasty disease. And I'm blessed to have a partner who knows when to hold my hand and say, “My poor sweetie!” and when to kick my butt and say, “Get over it!”