macular degeneration, macular, diagnosis Islands of Damage – My Macular Degeneration Journey/Journal

Islands of Damage

I have got about 45 minutes before I need to get ready to walk and go to yoga. Had to go to my third job today, just for the half day. My husband took me up and did errands for the morning, then we went to lunch and picked up my framed photos for the contest in the fall. I am four months ahead of the game but I had to pay extra to get them done on time once before. Not doing that again.

Lin gave me an article entitled “The Journey of ‘Geographic Atrophy’ through Past, Present and Future”. Started reading it …finally… today. First thing I read is GA is ‘end stage’ dry AMD.

I knew it was advanced AMD but never gave a lot of thought to it being end stage. Does ‘end stage’ just mean the last stage or does it mean I have almost reached the end of the deterioration? Need to read on.

There is depigmentation of the cells This is a problem because it is the building up and depletion of pigment that allows us to see. In GA you can get to look in and see choroid blood vessels with no difficulty, as well.

I have seen images of my blood vessels in my choroid. Nothing between them and the camera. Essential, my choroid posed naked.?

The article said seeing the degree of degeneration even with the new technology is difficult. That is apparently why my retinologist saw no change in my scans even though I was perceiving an increase in density of my left scotoma.

The article also said there is high variability in the location, number and shape of individual lesions. The makes sense considering my blurry spot is up and right when looking at the Amsler Grid and my ‘sweet spot’ for eccentric viewing is lower and a little to the left. In other words if I center my poor, wrecked fovea at 1 or 2 on the clock face, I can see things between 9 and 3, courtesy of my ‘sweet spot’. Other people are different, of course. Putting each fovea on the center of the Amsler grid and seeing what blurs out can help you chart your scotomata. Then, learn to work around them.

I am not sure if this is good or bad. Exception in a limited number of cases, the fovea is spared until the end. Does that mean I am actually more abnormal than I have always believed or does it mean I am at the end of the process? Dunno.

See why I feel like a mushroom???? Jeez. Need information here!

Geographic? It appears early researchers (and by ‘early’ I am referring to the 1970s! Research and discoveries are traveling at light speed and there is no reason to lose hope something else helpful will be discovered soon) thought the sharp demarcation of lesions like ours looked liked borders of islands and continents as drawn on a map. That is where geographical came from. We have islands of damage in seas of healthy tissue.

Ok. Gotta run. There is lots more in the article though. Will let you know.

Next: Overcoming Uncertainty

Home