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tracey001

Newly dignosed with Macular Degeneration and scared to death

Posted by @tracey001 in Eye, Ear, Nose & Throat, 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

Tags: eye conditions

vinod

Posted by @vinod, Aug 31, 2011

You may try for an Ayurvedic therapy which is best. you may contact me for more details.

pepinoble

Posted by @pepinoble, Sep 1, 2011

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

tracey001

Posted by @tracey001, Sep 26, 2011

Thanks for you web sight. I am terrifed of what the future holds. I already have Cerebral Plasy, I am a teacher and very independent. I have alway prided myself on this independence . Now I feel my life is going to be over. can you see anything? do you still watch tv, or go to movies? What do you do for fun?

pepinoble

Posted by @pepinoble, Sep 26, 2011

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.!!

tracey001

Posted by @tracey001, Sep 27, 2011

Thank you sooooo much. I really feel like my life is going to end. Talking to you gives me hope. Thank you again for your support. It really means more then you know!!!!

pepinoble

Posted by @pepinoble, Sep 27, 2011

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.

robertaj

Posted by @robertaj, Sep 24, 2011

HI TRACEY. I ALWAYS TYPE IN CAPS SO DO NOT TAKE IT AS YELLING OR SCREAMING.
I TOO JUST FOUND OUT I HAVE SOME FORM OF MACULAR DEGENERATION (M.D.) AND HAVE AN APPOINTMENT WITH AN OPTHAMALOGIST ON OCT 3.. HOWEVER MY ELDERLY MOTHER (99) HAS HAD IT FOR 20+ YEARS, SO I HAVE WONDERED WHEN AND IF I WOULD ALSO BE AFFECTED.
I WOULD ENJOY EMAILING WITH YOU TO WALK DOWN THIS PATH TOGETHER. HOPEFULLY, WE CAN SUPPORT EACH OTHER AND SHARE OUR INDIVIDUAL SUCCESSES THAT MAY HELP THE OTHER.
EMAIL ME WITH YOUR INTEREST.

tracey001

Posted by @tracey001, Sep 26, 2011

I have another appointment with my retinel specialst on october 25th. I am very scared
I kinda have been able to put it to the back of my mind right now becasue I am still able to do everything. I would like to keep taling to you also.

maureen123456

Posted by @maureen123456, Dec 25, 2011

I am wondering if any of the treatments, injections, etc offered at the Mayo Clinic or elsewhere help to slow MD down. I cannot drive at night and the eye doc says that at 65 my MD is more than what would be expected. Dad, a physician, went blind from MD as did mom's uncle. I use my eyes alot, paint, read alot but the driving problems have me scared into action. I live in Northern VA right near DC and the drivers are insane, I need to see them coming.

bettyann

Posted by @bettyann, Apr 20, 2012

Hi Tracey, Just came across your post and thought I would write and see how you were doing.
This has been my experience. I agree with many of the posts that have been sent to you...my main message to you is STOP WORRYING.
I am not sure WHY eye docs keep insisting on 'a slight case of mac degen' in SO MANY PEOPLE...and it usually scares the heebee jeebees out of everyone. Some have been MISdiagnosed.
Some who may have been correctly diagnosed --there 'condition' has never EVER progressed.
Please use (if you wish) supplements and herbs that are disignated for good all around eye health and it will make a huge difference.
Tell yourself "I am allowing the Fear to simply go away"... Tracey...that is important...hopefully you have done that by now...and its ok to 'worry' a bit now and then! 🙂 doesn't mean you are a 'bad girl' for doing so! 🙂 Just sending you love and a hug and letting you know things will be alright. You sound like a terrific person!!

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tracey001

Posted by @tracey001, Jun 19, 2012

Thanks you so much for the support. Its been almost a year. I am still teaching and still doing everything I did before. I have done exactly what you said just let the fear go away. Thank you soooo much!!!

baldy123

Posted by @baldy123, Jun 18, 2012

Hi Tracey. Your original post was in August and I am assuming 2011. It is now June 2012 and I wonder how you are doing? I just got diagnosed with DAMD and awaiting some tests to tell me more. I have to work hard to deal with the diagnosis as I also have PTSD and MDD. I have meds for both anxiety and depression but of course meds only do so much. I use Cognative Behaviorial Therapy techniques but of course regardless of what I do, I have my times of getting down. Anyway if you read this I am just curious on how you are doing almost a year later.

tracey001

Posted by @tracey001, Jun 19, 2012

Hi
Yes it has almost been a year since I was dignosed. I went through a period where I was very depreseed. So far there has been no change as far as I can tell. I of course will have to go for new testing to see if they can see any change. My life really is still the same. I now know that there are alot of resources out there to help. I know what PTSD is but what is MDD?

baldy123

Posted by @baldy123, Jun 20, 2012

I am glad to hear that you haven't noticed any changes in your vision for a year. MDD is Major Depressive Disorder. I do the Anselar Grid test everyday and will have a test to look at my retinas on the 28th of this month. Thanks for the reply. It lifted my spirits.

tracey001

Posted by @tracey001, Jul 8, 2012

How did your testing on the 28th?

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