Saturday, October 28, 2017

It's all about the eyes

Not my eye
"What do you mean, you can't do anything?" That was me asking my retina specialist about the changes I've recently experienced in my vision. He explained that I have progressed from having intermediate-stage dry AMD (age-related macular degeneration) to the advanced stage of geographic atrophy. I have been hoping that the upcoming cataract surgery, scheduled for the end of November, would give me back my vision, but no, that's not going to happen. It will help, perhaps, but I'm simply going blind. I'll probably be legally blind before I reach my eightieth birthday. But then again, he told me that there is no way to predict the progression of AMD.

For some reason, my vision distortion and loss has accelerated since my previous visit. A rather distressing snippet from the above link tells the story:
Geographic atrophy will progress relentlessly through the central macula and cause significant impairment of vision and quality of life.  Still, an individual will always retain peripheral vision and will not go completely blind.
Well, that's just swell. If it were my knees going out, I could get them replaced. Unfortunately, it's my eyes, and I'll just have to find a way to cope with loss of vision. So far, the damaged area of the macula is not in the middle but off to the left a bit. I can still read just fine, and I suspect that after the cataracts are removed I'll see a little better than I do today.

Sorry for the bummer of a post, but I'm not actually thinking about much else today. I'll be back to my old cheerful self once I have a chance to get used to it. Plus, I've got the hope that the cataract surgery will help me see better, for awhile at least. And I'll learn adaptive techniques, just like other people do. I did learn in my research that Judi Dench suffers from it, the same sort of vision loss I have. She copes by having her scripts enlarged so she can read using her peripheral vision.

Anyway, for now I can still see well enough to read, watch TV, and play in the sunlight. And write blog posts. I'll continue to do all that for as long as I can.
:-)

21 comments:

  1. Oh my God, Jan, I am SO SO sorry to hear this! I got a 'scare' about my risk for macular degeneration from an Optometrist about 10 years ago, and in the seconds the words came out of his mouth, I felt my heart go into my stomach and I thought I was going to throw up or pass out or both. When I got myself to an Opthamologist, I found out the Optometrist was completely wrong. Still, I fear this to a degree. You are one of the most amazing women I "know", and I'm confident you will end up handling this as well as anyone could, but I'm still devastated to hear of this, my sweet friend. You will be in my prayers.

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  2. I don't blame you for being bummed! This is terrible news. Do your research and maybe go for a second opinion. I have a friend who is legally blind and has been for 15 years. She recently had some new surgery that has restored some of her sight.

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  3. I am sorry you have to deal with vision impairment. I pray the cataract surgery is helpful. Give yourself time, Jan. You will adjust and handle whatever happens.

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  4. I am so sorry to hear about this. Of course this is all you are thinking about today. News like this has to be processed and that takes time. One thing I do know is that if anyone was able to make the best of a situation like this it would be you! I don't respond very often but I have followed your blog for a couple of years now and I quickly learned you are an amazing woman! You can do anything you set your mind to and you always do everything with grace. This is a challenge but I have no doubt you will adapt and find a way to do all that you love.

    For now give it time to sink in and do like Barb suggested and do some research and maybe even get a second opinion. These days things like this are not always as bad as they sound at first even though I know this must be devastating to hear. Just remember you are a very special and resourceful person and you have many people - on and off line - supporting you.

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  5. That had to be a real kick in the gut. However, like Barb suggested, I'd get a second opinion. I'd also do some research on clinical trials. They are working on this daily so no telling when a break through will come across. You are one of the strongest women I know. This will not conquer you. Sending prayers, thoughts and support to you my friend.

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  6. Wow....and here, I like you, thought you'd have no problems after the cataract surgery. Yes, I read that about Judy Dench quite a while ago. And for computer vision [or vocal tele-prompts], you can always enlarge the text as she does the scripts...ctrl/+ as many times as you need, each click the text gets larger.

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  7. Oh DJan I am so sorry. Holding you firmly in my heart and hoping for the best.

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  8. My heart goes out to you DJan (Hugs)
    Let's hope that it is slow in it's path, and takes years before you are effected significantly by this.
    I had a procedure done a couple of years ago where they actually burned holes in my eyes with a laser, my vision changed after that, I've had to learn new ways of focusing.
    Sending healing wishes your way, from Oliver and myself :)
    Hugs,
    ~Jo

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  9. That news was a slap in the face. I just hope the degeneration happens as slowly as possible. Thinking of you.

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  10. Oh DJan, I'm so sorry to hear this! Sending lots of love and hugs your way.

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  11. It really saddens me to read what's going on with you DJan, you don't know me but, when it comes to what I believe to be a good person like you, that's going through what you're going through, my heart truly goes out to you, including others that are going through hardships that are good people as well.

    Thanks to your comment on one of Elephant's Child's posts, I was able to find this post of yours including your blog.

    I hope all goes well for you DJan, I don't like when good people suffer.

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  12. That saddens me. I hope that science will advance rapidly and solve your problem.

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  13. Keeping tabs on this situation is important. I hope that the progression is slow .

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  14. Getting older is such a bummer at times! Having had vision issues since I was about 15, I can sympathize, and I think I know a little of what you're thinking. (I was going blind in high school, but was rescued by cornea transplants.) Good luck with adapting to this. I will have another reason to be thinking of you.

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  15. While I never knew my mother's official diagnosis for MD, this geographic version describes her vision loss. She was legally blind, but when we took her for a ride in the countryside, she could see the cattle in the fields, sideways. Up until her last days, at almost 90, she could still laboriously read the newspaper with a hand held magnifying glass. She could still sign checks. She could still recognize most people. Our friend Mavis is not so lucky. She has lost all sight in one eye and most in the other.
    This is indeed bad news that you received today and I grieve for you. Do know, however, that if MD is your fate, you have the preferred kind. There might be some comfort in that.

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  16. I’m so sorry to hear this. Your photos continue to inspire me. Remember that all of these sights are tucked away in files in your brain to remember whenever you wish. I hope these words don’t sound flippant to you, but rather to give you comfort. Let’s hope the diagnosis takes much longer to be evident in your eyes.

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  17. You are a strong trooper and I am pulling for you, hoping surgery will help and the degeneration proceeds very, very slowly.

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  18. Oh my I am so sad for you. Of course you will adapt but why you? Hardly seems fair. I saw some special glasses that someone wore in Canada to restore his sight....there is always hope ...right...right!!

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  19. Well, crap. But who knows the advances that will be made in the next few years

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  20. My sense is that technological advances will lick this before you turn 80. Stay hopeful and informed!

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  21. I don't know what kind of MD my mother has but she has to go in every six weeks or so to get shots in her eyes to try to keep her vision the way it is. What horrible news! So scary! So very sorry to hear that.

    My wonky macular pucker actually got worse with the cataract surgery (which was a possibility they didn't tell me about). At least I have one good eye and--yes--I can see clearer after the cataract surgeries. It will take some inner adjustment--yes--but you have a rich field of inner strength. Hopefully your MD will slow down and you will always find ways to adapt so that you can still do everything you love to do. Love and hugs, dear lady!! :)

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