Body Betrayed | Body Disabled

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Wednesday, July 28, 2010

Myasthenia Gravis Update

The new medication for myasthenia gravis is helping somewhat. I am not as fatigued and exhausted as I was last week. Now, I can go until about 1 PM without much problem. I still need lots of rest, I can tell very much when I am not rested. The Mestinon works and helps my strength, but wears off before 4 hours is over.

My breathing is better and I do not feel my diaphragm working as hard while the Mestinon is in my system. But, I still feel tightness (or discomfort) in my throat when I breath.

My vision is giving me lots of problems. It will blur at various time for no apparent reason. I know this is part of the MG, but it is very strange to have it happen while you are working. Blinking and refocusing my eyes seems to help. I am glad for computer and large type.

My voice is still a big concern for me, since I make my living with my voice. I do my own audio/video editing of each weeks sermon. In the audio editing, I can see a visual graph of the volume of my sermon from beginning to end. Usually, the volume graph stays around 80%. Over the last few weeks, the volume graph begins at 80% and ends somewhere around 40%. I can tell I need to use more force to project my voice as I go through the sermon. This is also part of the MG condition.

My autonomic and small fiber sensory neuropathy continues with the same intensity.

We have been doing a lot of soul-searching this week and dealing with some difficult issues. Thanks for keeping us in your prayers. I am having problems thinking and keeping my memory sharp. I do not know if this is part of the MG or from medication. So, if my words sound strange--they just may be!

New Web Site

I have also been working on a new web site for some time now. You can see it a

I am getting ready for my book to be printed through CreateSpace. CreateSpace is a Publish on Demand printer. This way, I do not have any up-front cost on my part and books are printed when they are ordered and then shipped directly to the consumer. That is a good way to publish for me. The book will be available on my web site eStore and from soon.

I think the price will be $11.99. That depends on the final page count and final cost per book from CreateSpace. My goal is not to make a fortune, but to have the book priced inexpensive enough for people to purchase and read it. I hope it helps a lot of people.

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