I am so pleased that Connie Roberts agreed to share her story with us today! Connie has a wonderful blog, Brain Foggles, where you can find amazing deals, helpful tips and thought-provoking articles. Be sure to head over and “meet” her!
The MDA Saved My Life
By Connie Roberts
I never thought that at the age of 40 I would be asking for my first appointment at the MDA. After all, doesn’t muscular dystrophy happen to children or at occur at birth? Nope, several types of MD can begin in adulthood as I learned. And thankfully the Muscular Dystrophy Association is the expert on all types of these muscle diseases because the MDA saved my life.
It all began with a twitching feeling in my right eye the week of my 40th birthday. I assumed that I wasn’t getting enough sleep or was using my eyes too much. Then I began to feel so tired that I literally felt like I could lay down anywhere and sleep. My eye kept getting worse, by now it was hard to keep it open.
At my 40th birthday party, I wasn’t sad about getting older. Instead I was scared that something was terribly wrong with me. A brain scan and other frightening tests was scheduled after I was told that I could have anything from a virus to a brain tumor.
A few months later, I was told that I had Myasthenia Gravis. Just like you, probably, I had never even heard of the word. MG, the shortened name, symptoms are described by the MDA, “MG causes weakness in muscles that control the eyes, face, neck and limbs. Symptoms include partial paralysis of eye movements, double vision and droopy eyelids, as well as weakness and fatigue in neck and jaws with problems in chewing, swallowing and holding up the head. Muscle weakness in MG gets worse with exertion and improves with rest.” – source
After dealing with a local doctor who had little experience with MG, I learned that the MDA clinic treats many of us with these disease. My first appointment put me and my husband at ease. Here was a neurologist that specialized in MG. He was on the board of the MDA, was recognized for his research and treatment. I was going to survive!
There were other services I received as well. A service coordinator was assigned to me and my family. She is kind of like a social worker. Back then, I received funding for a scooter which I desperately needed. (Now there are medical equipment loan closets.) I was given all sorts of pamphlets about MG, information on a local support group, a phone number to call just in case I was feeling down and so much more.
What the MDA Does
Besides clinics with specialists and support to patients and families, the MDA funds research to find a cure and better treatment for the neuromuscular diseases. Their services include summer camps for children, conferences for both medical professionals and patients, educational services (for example help with IEPs) and advocacy for us via laws and funding for research.
How You Can Help
Of course, you can donate funds. Always ask if your employer will match your donation or create a group effort to raise money. Volunteers are always needed at summer camp, at fundraising events especially to answer phones during the Labor Day telethon. You can bring awareness to the MDA by blogging about them or sharing information. Equipment is always needed, be it computers, office supplies or medical equipment.
Since the MDA saved my life, I know it can do the same for others. It can better the quality of life of so many. And it is all done for free. I pray that you will do something to help this amazing non-profit in whatever way you can.
* If you have a worthy cause or organization that you would like to write about, please contact me at [email protected].
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