Welcome!

cropped-brown-eye-6793182

You are here to follow the journey & misadventures of a woman named Sue who became visually impaired with Age-Related Macular Degeneration (AMD or ARMD) seemingly overnight.   Join in the tears and laughter. Join in the discussion. Learn more about Age-Related Macular Degeneration. Find resources for your own journey or that of someone you know.

We’re going on a bear hunt….can’t go over it, can’t go under it, got to go through it.

Sue is a psychologist trained in Dialectic Behavior Therapy (DBT) and is using it to help her cope with this vision loss. Her trusted and invaluable friends bring computer, research and occupational therapy skills to this endeavor. Yeah team! We hope you benefit from the fruits of our labors.

We are not offering free psychological therapy.  We are not medical people.   Please read the disclaimer.

This website is divided into 3 parts:

  1. Sue’s pages which are like chapters in a book
  2. Highlights & News which are basically blog posts
  3. Links to helpful resources (still under construction)

For those of you who aren’t familiar with websites or blogs like this, to ensure that you will be notified when information is added to the website, you must subscribe by email.  On a laptop & most tablets, you’ll find the place where you can do this in the right-hand column.  On a smart phone, you will find it below the content for the page that you are looking at.

We are still learning, we don’t know everything about this awful disease.

We’ve tried to make the website as easy as possible for those with low vision to read and navigate.  We will be adding more accessibility features in the future.

Thanks!

Thanks to Lesley B., Sally R., Dave M. and Gerry M. for going through the website looking for links that didn’t work, things that didn’t read well and typos.  We couldn’t have done it without you.

16 thoughts on “Welcome!”

  1. I have found your blog and am thrilled as I work for the Macular Society and you are really inspirational. I would love to be in contact with you.

    1. Thanks for your kind words. I’ve sent you an email just now. Please let me know if you do not get it. Linda…

  2. Hi Sue, it’s so nice to meet you!! I wanted to thank you for following my blog which allows me to return the favor. My vision is the equivalent of someone with advanced Macular Degeneration (I lost my sight to Macular Holes and a host of other issues). Looking forward to learning more about your journey. Steph

    1. Thanks for joining us, Steph. Linda and I love your blog and hope to get to know you better as well.

  3. I am looking for free apps to put on my phone cuz I have low vision and I have macular degeneration so I’m trying to find some things that I can read my phone better with macular is a terrible disease I hope someday in my time if not in other people’s time they come up with a cure for this because it’s terrible not to be able to see not to be able to tell colors apart not to be able to do a lot of things that you’re used to doing and all of a sudden it’s gone thank you so much

    1. Thanks for your comment. I sent you an email, let me know if you didn’t get it. I asked about the kind of phone you have (Apple or Android) because the features and apps are different. I am working on a post about Apple accessibility & apps for low vision, hope to have it done in a few days. You are right, macular degeneration is awful! There are some promising studies and treatments in the works. I hope that there IS help for folks in YOUR lifetime. I hope that you’ve signed up to follow our website and blog so that you can read of Sue’s journey and to be kept aware of what’s going on in the field. And there’s lots going on in our Facebook group. If you can’t figure out how to sign up to follow us, let me know. Linda…

  4. I’m a school psychologist and got diagnosed three months ago. I had summer off and tried to go back today. I made it four hours and struggled the whole time to visually focus due to distortions. I can’t do my job and I’m only 48 and need my income. My vision is actually “good” at about 20/25 but it can’t read things for very long unless the angle and light are perfect I can’t figure out how to do my job which includes a lot of reading. Any input or advice would be appreciated.

    1. Cheryl, this is Linda, Sue’s friend. I hope you got the email that I sent to you yesterday. Sue is also a school psychologist who earlier this year found out that she could not continue to work with her vision decline. I hope you’ll read her journal pages because she shares what she did to get back to work fulltime. There are also tips and advice in the posts under Highlights & News. I see that you’ve joined the Facebook group–GREAT!. Let me know if you have any other questions.

  5. hi
    I am on the site for quite a while and find it very informative. Just wondering about eye vitamins. I have been taking Preservision Areds 2 and noticed it contains 40 m of zinc which is above the recommended doseage. I switched to Occuvite and have stomach issues with that.
    Can anyone recommend an eye vitamin that has less zinc and doesn’t cause stomach issues?
    Thanks
    Ethel

    1. Thanks for posting, Ethel. The subject of the AREDS/AREDS2 vitamins is one with lots of varied opinions. I’m going to share this post first & will be back with more! In the meantime, we’d like to hear what others are taking – or not taking. –Lin/Linda… http://mymacularjournal.com/archives/3930

  6. Hi! My bestfriend is 26 years old and was diagnosed with macular dystrophy. It all happend within 3 months! This is her 2nd week dealing with it and she’s really depressed. She had to quit her job and now is about to lose her apartment. I’m trying to research this and find things we can do to help her because her vision isn’t lost she just can’t see things in the center it’s a blur for her. If ANYONE can help me I’d appreciate it. It kills me to see her depressed and down. I’ve been trying to uplift her spirit I just need some help fabulazzz69@gmail.com we are in Florida

    1. We are so sorry to hear about your best friend. You are a great friend to research the problem for her. Her situation sounds similar to Sue’s so I think that you need to get her to read Sue’s journal pages. One of the things she should do is to contact Florida’s Department of Blind Services http://dbs.myflorida.com/. There’s also Florida’s Division of Vocational Rehabilitation http://www.rehabworks.org/. I’ve sent you an email with some other suggestions.

  7. Hi Sue! I just stumbled across this blog and fell in love. I am a student at the College for Creative Studies majoring in Product Design. I worked with a professor to set up an independent studio this semester focusing on developing products for the blind and visually impaired community. I have learned more in the past few weeks than I could have imagined! If you ever have a chance to talk one on one about your experiences please email me. I’d love to hear even more about your journey.

Leave a Reply

Your email address will not be published. Required fields are marked *