Myasthenia Gravis is a disease that has taken up residence in our home. Yes, its Laura’s disease, but the entire Crew affected by Myasthenia Gravis. So we have all had to make adjustments and learn how to live with this “invisible” disease.
What is Myasthenia Gravis?
“Myasthenia Gravis is an autoimmune disease which results from antibodies that block acetylcholine receptors at the junction between the nerve and muscle.”
What?!? Okay, English PLEASE!
This disease is a non-degenerative form of MS that causes the nerves to not communicate with the muscles but, in most cases, it mainly affects the facial muscles. Usually individuals with this disease will notice droopy eyelids and trouble talking and swallowing.
In the most severe cases, the entire body is affected and therefore will cause trouble standing and walking, balancing, and severe fatigue.
Guess which version Laura was diagnosed with several years ago.
Myasthenia Gravis is our disease
When one person in a family has a disease like this, it affects the whole family. We have had to make many adjustments in our everyday lives.
On some days, it’s hard to believe that Laura has anything wrong with her. She can hardly get out of bed on other days.
The children and I have learned to pick up some of the slack on the bad days. Shelby, Dave and Nick are able to fix some simple meals, when necessary, and I can throw together a good health meal on the evenings at a moment’s notice. Over time we are all becoming better cooks. Many times, we prepare slow cooker meals and put them in the freezer so Laura can grab one and put it in the slow cooker to have a good meal for us on those bad days with minimal effort.
I think the worst part of Myasthenia Gravis is the fact that the symptoms fluctuate. As a result we never know when it’s going to be a good day and when it’s not. It makes it a little difficult to plan activities and be able to carry out those plans.
Myasthenia Gravis has forced every member of Crazy Dave’s Crew to be flexible and understanding. Read more about how we handle living with our disease.
