Myasthenia What???

The first question we asked was what is Myasthenia gravis. Google says it is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control. It’s caused by a breakdown in the normal communication between nerves and muscles.

There’s no cure for myasthenia gravis, but treatment can help relieve signs and symptoms, such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing.

That helped somewhat, but of course we had to keep looking and learning. We found a wonderful site myathenia.org which has helped us understand so much more.

We found out that MG is known as the snowflake disease. That’s because the symptoms can vary from patient to patient. For Gary, MG means:

1. His eyes don’t always cooperate. His right eye will begin to close and look off in a different direction. His vision gets blurry, his eyes burn and water. I often tell him he is acting like his chickens when he turns his head trying to see something…he does look very much like them at that time! Ha!
2. His smile sometimes makes him look like grumpy cat.
3. His fine motor skills don’t want to work. Picking up his medication with his fingers is a difficult task
4. He is unable to open twist tops. We swear the companies are putting them on tighter…perhaps with a little glue? HA!
5. Walking/standing is very difficult. He wobbles and does what we call a two step. When standing too long (more than 3 minutes) he will begin to slowly fall into a sitting position. I’ll hear him say his hydraulics are quitting!! (Always making us laugh!)
6. He has to be careful eating certain foods as he chokes easily.
7. Breathing is the most difficult for him. His diaphragm tries to keep up when he is walking or moving but doesn’t always. He is very much like a fish out of water after simply walking to the restroom and back. It isn’t a matter of having enough oxygen; it’s moving the oxygen around in his lungs.

He does use a walker which we call his portable chair. When he has to walk a long distance he uses his wheelchair of which I’m the driver. That gets quite entertaining at times! HA! He does have a cane for times when he is going a very short distance such as into a restaurant.

Gary has been through so much trying to get a diagnosis and then learning how to adapt to his new life…a life very different from what he was accustomed to. However, he continues to have faith in tomorrow, he faces each doctors appointment with a positive attitude, and he reminds everyone he comes into contact with that HE IS BLESSED.