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Newly diagnosed with Macular Degeneration

Posted by Tracey001 @tracey001, Aug 18, 2011

I just found out that i have Macular Degeneration possibly Macular Dystorphy and I am scared to death. I haven't eaten in three days and I feel a huge sence of hoplessness. I would really like to talk to others who have it and how they are coping

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blcoll | @blcoll | Mar 14 5:13am

Thank you for this post. Very appreciated.

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1 reply
kaye46 | @kaye46 | Mar 15 10:29am
In reply to @pepinoble "Don't despair, there are many ways to understand what's happening. Once you know you can handle..." + (show)
@pepinoble

Don't despair, there are many ways to understand what's happening. Once you know you can handle anything. Please feel free to take a look at my website - http://www.maculardegenerationandme.com - it's all about my journey with mac degen and the things I've learned along the way. And as far as eating, you must. It's important. There is a ton of info out there are the types of foods that may possibly help and besides are good for you. Low Vision, High Hope

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I was unable to open your website, something to do with the domain name.

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sjs1 | @sjs1 | Mar 15 11:45am
In reply to @blcoll "Thank you for this post. Very appreciated." + (show)
@blcoll

Thank you for this post. Very appreciated.

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I have a telemed call from the Cleveland Clinic in April on response to 1. and 2. below . This is a reply from Brightfocus. I found a source for AMD progression prevention called the macularprogram.com but the price is too steep for me although he claims good results. I can’t take AREDS2 with zinc apparently because I have the CFH gene. I will ask at CC what to do about AREDS2. I use Alleyes a free app for macular degeneration testing instead of the Amsler grid.

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1 reply
sjs1 | @sjs1 | Mar 15 11:47am
In reply to @sjs1 "I have a telemed call from the Cleveland Clinic in April on response to 1. and..." + (show)
@sjs1

I have a telemed call from the Cleveland Clinic in April on response to 1. and 2. below . This is a reply from Brightfocus. I found a source for AMD progression prevention called the macularprogram.com but the price is too steep for me although he claims good results. I can’t take AREDS2 with zinc apparently because I have the CFH gene. I will ask at CC what to do about AREDS2. I use Alleyes a free app for macular degeneration testing instead of the Amsler grid.

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https://macularprogram.com/

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kaye46 | @kaye46 | Mar 16 9:11am
In reply to @pepinoble "Tracey - I've been thinking good thoughts for you. One thing I think would give you..." + (show)
@pepinoble

Tracey - I've been thinking good thoughts for you. One thing I think would give you back a feeling of independence would be to work with a low vision occupational therapist. That person is highly trained in helping people with activities of daily living and also safety, giving you back control. Your ophthalmologist can give you a referral. Please look into that. If you need some help finding one, let me know. You can also look at my http://www.maculardegenerationandme.com articles in the next few days for some other ideas. Try to turn your negative thoughts into positive or at least neutral. All this stress doesn't do your eyes any good.

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Your link still does not work, I get a message about it not having a link to a domain connection.

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1 reply
mosaics | @mosaics | Mar 17 6:30am
In reply to @kaye46 "Your link still does not work, I get a message about it not having a link..." + (show)
@kaye46

Your link still does not work, I get a message about it not having a link to a domain connection.

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The link works for me.

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kaye46 | @kaye46 | Mar 17 4:22pm

This is the message I get: "Something unexpected happened while accessing this website. It looks like it doesn't have an active domain connection upgrade to link the requested domain name to the WordPress.com site."

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