Playing Clue

I really need to learn to keep my mouth shut. Yesterday I said all was quiet. Today I noticed the scotoma aka blind spot in my left eye was much more opaque than I remembered. De-freakin’-lightful. What exactly does THAT mean?

Since it is Sunday evening and not exactly an emergency, I don’t have a way to get an immediate answer. I shot off an email to my local retinologist. Should I panic or is this normal progression of the disease? Everything I have read says scotomas can be light gray, dark gray or black but nothing ever said if there is a progression and/or what that progression might be.

I looked online and it appears this opacity is called density. Maybe. That is what I supposed from reading a whole slew of article titles and descriptions trying to find something that describes what happens to scotomas as the disease progresses. You know full well I did not find such an article.

Really! These are not state secrets! Why can’t someone give us some basic information? They write books on what to expect when you are expecting and what to expect from your two-year old. Why not something on what to expect when you are losing your sight?!?!?

End of current rant. If you have any idea, let us know, ‘k? Sometimes I feel like I am playing a massively involved game of Clue or something. Was it Colonel Mustard in the garden with a pitch fork? Inquiring minds sincerely want to know.

The sad part is the availability of good knowledge in AMD has been a problem for years. I started listening to The First Year: Age-related Macular Degeneration. The book was written in 2006. Guess what HIS first rant was? Doctors who told him nothing. The author, Dan Roberts, did exactly what we did. He went online and found knowledge and comrades for his fight.  Reading his 10 questions that should get answers from the time of the diagnosis, I was happy to see we here are traveling a similar path as Roberts had. Roberts believes people with AMD should be told what to expect and how to find resources and live successfully. Now there is a novel idea! ?

He also has several other topics listed as chapter headings. We have covered a large number of them. Everything from ADA to stem cells and beyond. [Lin/Linda: click here Click here to preview the book.]

I will continue to listen to the book. It is already 11 years old but you never know what I might uncover between its imaginary covers (it is an audio book through BARD, ya know). Probably time for a rewrite….or we could write one ourselves. How do you like that for a scary idea?

So question: what would you want to see in a book on AMD, the life and times of men and women who have it, etc, etc? Might be a project here.

written April 24th, 2017

Next: Always Learning More

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