My New Friend

Mindy Shaw hooked me up with a lady who has MG and who was diagnosed during her pregnancy as well. She has struggled with it for 30 years and has such a positive attitude about the disease. I have been corresponding with her via email and I thought I'd share some statements she has said to me that have helped me a lot.

• When I say function it is not function like before. Weakness and fatigue are our everyday companions.
• The bright side of MG is what you learn to do that most everyone else never learns and that is to prioritize, organize and move with ergonomic efficiency.
• The name of the game with every thing you do is “How can I minimize movement?” “How can I do what I want to do within the limits of my strength?”
• You just have to get creative and do things a bit differently.
• Our bodies declared war on itself, weird isn’t it.
• My hands are not my chief nemesis
• Remission for MG is not a cure but in comparison you feel cured because it is strength you have rarely known in your life.

She is great and has really encouraged me to not lose hope and focus and to just be creative. George has lowered all of our hooks and racks around the house, mom purchased me a hair dryer stand, and I bought some plastic plates and bowls so that if I drop them it will just bounce back. The name of the game is modification, accommodations, and creativity.


One thing I would like to educate others about is that MG is not something that can be controlled or have a quick fix. Many people tell me to just get some weights, or get some rest, or take a pill and you will get stronger. MG is an autoimmune disease and the body feels the need to destroy the receptors between our nerves and muscle. The connection is not being made and it has nothing to do with strength or exercise or eating, etc. Messages in the body are reaching the brain at a different rates due to a lack of receptors between nerve and muscle tissue. Think of all the muscles in your body, and how many parts this effects. It moves around my body from day to day. Some days its my fingers, wrists, arms, legs, feet, throat, neck, eyes, back and tongue. One day I can put my hair towel over my hair, and the next day I can't. One day I can get out of the chair, and 5 minutes later I can't. Rest is key and the less I do something the easier it is to do once. I have always been an educator and I believe that the only way to truly understand what someone is going through is to live it, but the next best way to understand is being educated yourself.