One of the scariest aspects of a myasthenia gravis diagnosis is the feeling of entering uncharted waters. While more common conditions like diabetes or heart disease are equally life changing, there is comfort in knowing friends, neighbors and family members who have faced these conditions before. Myasthenia gravis is so rare that it can make those new to the disease feel very alone. But there are people all across the world who are living their best life with MG. Whether you are concerned about your career or family, whether you are a parent, caregiver, teen or older adult, there are people experiencing the same challenges you face.
No matter how daunting the challenges, a positive attitude, passionate spirit and focus on the future can make a tremendous difference in your life with MG. These personal stories offer insights on how to keep your spirits up when your disease has you feeling down.
In the spring of 1954, after weeks at the doctor’s office for appointment after appointment, he told my parents he didn’t know what was going on with me. He told them I was in perfect health except for my weakness.
My dad then asked, “Why does he have to place his palm under his chin to push it up to help him chew his food?”
The doctor was quiet for a while, thinking, and then looking at my folks said, “I think your son has Myasthenia Gravis.”
Until this time my MG was getting progressively worse. I had trouble going down stairs, holding my head up, chewing; my eyes lids drooped and my vision crossed, and worse, when I laughed I could not get my mouth to smile. These are a few of the things that come to mind. There are more that I’ve forgotten. It has been a quite a while ago.
In those days I started to attend high school and I was picked on, which didn’t help either, because I couldn’t keep up and was absent a lot. My doctor had put me on prostigmin which helped.
I wanted to write a little on my condition and tell some of the negative things that affected me so you might see that some of the things you may be going through I have also.
The good news is I never blamed God for any of my illness and I began to think positive. These are things I feel are important. God did not punish you or me with this disease.
Positive thinking will help you. Positive thinking is probably the most important thing one can do to improve your health, I am not saying it will cure you; it didn’t me, but it improved my well-being until I have been able to do most things and live a completely healthy life.
I improved over the years through high school and went on to a year of college. Shortly after my 19th birthday when we moved to Omaha, Nebraska, I applied for and got a job drawing plans and perspectives of kitchens. It was a fairly easy job, but as the company grew I had to make more drawings quickly for the salesmen. My fingers would get so weak I couldn’t hold the pencil. I remembered reading somewhere that a lot of times you can teach your other hand to write; all you need to do is practice. So, thinking positive that it could be done, I started off practicing with my left similar to how they taught me to print in kindergarten. After a few months I was printing with my left. When my hand would get tired I’d switch hands and go right on.
In 1965 I married my wife. At the time I was taking 6 prostigmin tablets every three hours about 6 to 7 times a day. Not going to the doctors, I medicated myself; if two an hour worked what will 6 do? My new wife helped me, she used positive thinking to try to get me to see if less would work and it did. Through other companies I worked as a technical illustrator, and with the positive attitude of “I can,” I succeeded in becoming an art director. This short version of my life up to 1975 is to show how with the willingness and the positive attitude, you can!
In 1975 I resigned my technical illustrator job. I now had three children, and a home to pay for and bought into a construction company in San Jose, California. My position was to be sales and to draw plans for remodels, which also slipped me into the construction end. It was hard even to hold a hammer. It took a bunch of taps to drive in a nail 3 ¼” long. I kept at it and learned how to frame, carry studs/material, and the longer I worked at it the stronger I got. Sure I was handicapped but I kept trying.
This is important for all of us -- keep trying. Exercise is important and you will grow, and you will be stronger for trying.
In 1980 I applied for and got my own contractor license for the State of California and spent the last of my working years selling, drawing the plans for and building houses and remodels to homes.
We have moved to Coeur d’Alene, Idaho, where I still get involved in doing things like exploring out in the country, geology, helping at museums and studying old machines and equipment. It keeps my mind off personal medical issues and it helps when you talk with others who have MG in my support group.
At the start I mentioned “positive thinking.” It is helpful to start a hobby; searching on the internet is interesting and I like to do it too, but it produces nothing. Start drawing or painting; you don’t have to be good at it; get a book from the library and start. As you practice over time you will look back at your first attempts and ask, “Who drew that?” One thing I like to do is to close my eyes and scribble on a piece of blank paper and turn it around and study it until I see something then draw it in. You’d be surprised what you can create from nothing. Making something has helped me to grow. It is very satisfying to create something.
Having MG is not the end. It is the beginning of something new and the more you try, the more you will be blessed.
Double vision, fatigue – these were two of the things Dawn Warner began to experience before she was diagnosed with myasthenia gravis (MG) in 2001. It wasn’t until she started dropping things—everything, in fact—that Dawn decided to seek medical attention.
“Things as light as a pencil seemed like they weighed 100 pounds,” Dawn said. “In addition to dropping things, I was having trouble even turning door handles.”
Dawn first visited a neurologist who suspected she had carpal tunnel syndrome. When she began falling down without warning, Dawn knew that wasn’t the case. For three years, she continued to visit several neurologists across different states seeking answers for her symptoms, and was officially diagnosed with MG at age 35.
After her diagnosis, Dawn began a holistic regime and went into remission for seven years, until December of 2012 when she woke up unable to open her eyes and noticed that her speech was slurred.
Although she is still not back to 100 percent today, Dawn manages to get out and do a lot with her family and friends. She’s gone go kart racing, zip lining, swimming and dancing. She’s even planned a trip to Alaska during the summer of 2015, and is planning to go on a long road trip this year. To help cope with her symptoms, Dawn mediates daily, practices positive affirmations and is active in her local MG support group.
“Bringing awareness to this disease is key, because so many people go undiagnosed for years, said Dawn. “I have firsthand knowledge of how difficult it is to find proper medical care, support groups and resources for the expensive treatment. I’ve had surgery, IV treatments and several medications. This recent flare up has me even more fired up to help create awareness. I am fighting just as hard today as I did 14 years ago.”
Peyton & Cameron Emens
At just two years old, Cameron (left) and Peyton (right) Emens were both diagnosed with myasthenia gravis (MG). But the twins, now 9, have never let their disease stand in their way.
While the girls are both very active today, the early years of their lives were not easy ones. Before the age of six, Peyton had already gone through dozens of rounds of intravenous immunoglobulin (IVIG) as a result of her MG; Cameron had to undergo a bi-lateral frontalis suspension to help keep her eyes open at just 7 years old.
“Cameron’s eyes were 80 percent shut, almost 100 percent of the time,” said her mother, Jamee Emens. “If she didn't have the surgery, she could have completely lost her vision. However, although her surgery was very painful, it was successful. She now takes Mestinon 2-3 times per day for her MG symptoms.”
Although both girls were diagnosed with type 1 diabetes as a result of the high doses of steroids they were on for many years during their early childhood, Jamee says both girls are doing great. While they are now completely insulin dependent, they both wear pumps to help regulate their blood sugars.
“Cameron is a competitive dancer, and Peyton loves basketball—her team went all the way to finals last year,” Jamee said. “Since they were diagnosed so young, living with MG is their normal. For them, there is no ‘coping’ with the disease; they live their lives to the fullest.”