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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Thank you for this post. Very appreciated.

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@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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@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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@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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@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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@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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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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@pepinoble

Tracey - I do everything - I can see, mostly. I can read, I watch TV, I go to the movies, I write my blogs and swim and whatever I want. My left eye is blurred and my depth perception sucks and my contrast isn't very good but there are so many ways to train yourself around these things. I did occupational therapy for Eccentric Viewing Technique which teaches you to use your peripheral vision. Ask your ophthalmologist for a referral. That will give you more independence for sure. The OT's teaching this are wonderful and will give you so many resources. They teach safety and household care.
As people become more familiar with mac degen I see many scary reports but many of them don't tell the whole story and that annoys me. In fact it makes me rally angry. New post coming on my blog this week.
Educate yourself, that's what helped me get the best perspective. Get someone in your family or a friend to go with you to the drs. Record everything, and ask questions, ask questions, and then ask more. Dr doesn't like it, find new one.
Do you like to dance? Take Zumba lessons, or something similar. It will make you feel
great and is good for balance too. Every morning, center yourself, smile, laugh and have fun. You can do it.!!

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Hello,
How long have you had AMD and what age were you diagnosed? What stage are you? Are you also still driving?

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@prayingtolucy2

Hello,
How long have you had AMD and what age were you diagnosed? What stage are you? Are you also still driving?

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Probably for 6-8 years I’ve had AMD, I am now 81. It’s been wet the last 6 months. At my last appointment the Dr. didn’t see any bleeding in my eye. I’ve been getting injections for
years only in one eye. No, I am not driving. Last Spring while driving I had a very serious
car accident. My insurance cut me off. That’s been a very hard adjustment but I know it’s
for the best.

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