macular degeneration, macular, diagnosis Talk the Talk and Walk the Walk – My Macular Degeneration Journey/Journal

Talk the Talk and Walk the Walk

I am coming out of the doldrums. Finding that my blurry spot in my left eye had grown did not help the process, of course. I was bummed about that but I tried to keep on. Remember opposite to emotion? You need to do things that are opposite to the crappy way you may feel.

Also, I have a little experience with this vision loss business. I don’t like it one iota but I know I can survive it. I have developed confidence I can carry on.

I also keep nurturing a lot of hope. Call me crazy but I think the research will finally get off the ground in 2017. Once I have the RPE stem cells in one eye? I start lobbying to have the other one done! Then in ten years or so maybe they will be ready with the photoreceptors. Since I am only 63, I can see an illustrious career as a lab rat ahead of me! I may still get back to my previous, rather myopic self. Nearsightedness will be a picnic compared to this nonsense.

Another skill I have been using is my comparison skill. It seems to be liver cancer season around here. One friend’s mother has it and our office dog also has it. Seeing how they are suffering makes me glad all I am doing is losing vision.

Anyway, just did ⅛ of a mile swimming. That is 11 laps. I used to be able to swim a mile but I was much younger then.

Part of the reason I swam it was I need to walk the walk as well as talk the talk. If I talk about movement, I should move!

Back on the exercise thing because of an article on AMD.org. That is the Macular Degeneration Partnership. According to a study done at the Wilmer Eye Institute, we with age-related macular degeneration are sedentary homebodies!

OK, OK, those were not the exact words they used but compared to controls and glaucoma patients, we move around much less and don’t get far from home. Why? Oh probably because we can’t see and travel outside your comfort zone is more than a little scary.

But the results of staying home and not moving are pretty scary, too. Isolation, depression and a host of physical problems can result from sitting at home.

Which reminds me, the orientation and mobility (OM) guy finally answered his phone! My BVS person said the OM guy is supposed to call me next week. I am not holding my breath. Apparently OM instructors are a rare breed and are kept busy….generally elsewhere it would appear. (Oh, meow. Be nice, Sue.)

Hopefully I will soon be able to tell you about my orientation and mobility lesson. Soon would be good.

In the meantime, here in real-time it is summer and time to find a pool. Many YMCAs and private recreation place, as well as towns, have pools. You cannot get too lost in a pool, especially one with lap lanes. Dig out your water wings and get out there!

Another PS: it is okay to be the only person on transportation with (small) sports equipment. When we kayak after work, I take my life vest on the van with me in the morning. People are pretty accepting of eccentricity!

Next: coming soon!

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