My Macular Degeneration Journey/Journal
From Diagnosis to Decision – June 2023 Since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you'll get some pages 'not found' or 'private' until that decision has been made. The emphasis for several years has been on the Facebook group.
Sue’s written about the depression that comes with a diagnosis of AMD. What effect does it have on the family?
Sue continues to search for information about how much of her sight she could possibly lose and shares some early information about the extent of both central and peripheral vision (more to come). On another topic, she’s not the only one who says “if we have to be losing our sight, this is the best time in the history of man to be doing it.” Not only are there injections to manage the symptoms of wet AMD, we have a lot of visual aids – computer and non-computer – plus the body of scientific knowledge & research is growing by leaps and bounds. You may recognize this page’s title from the X-Files TV show. Should we have the “MD-Files”? ::smile::
Whoops, this should have gone out 2 days ago…sorry!
There is a company in the UK who has created low vision goggles that they say gives many of the functions of a CCTV that you can wear. Here’s more information in this page. We’d love to have a volunteer to test this and give us a report.
Sue easily admits that she sometimes doesn’t apply techniques that she knows & teaches to her own life. In this case, she tells us to do as she says, not as she does – in this case about…
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One of the limitations of our website is that it doesn’t easily allow people to interact with each other (there is the option of the reader leaving comments but everyone doesn’t see them necessarily, it’s a way to be in contact with Sue & me). We have a Facebook group which at the moment has 663 members (growing steadily) where we can easily have conversations. Last weekend we had a very lively one about how our friends and loved ones react to our vision loss or fears of vision loss. Sue’s not in the group because she is so busy but I do keep her appraised of what’s going on. She shares her research and experience on the topic.
To find out more about the Facebook group, click here.
In September of 2016, National Geographic had as its cover story “Why There’s New Hope About Ending Blindness”. Of course, we hope that means an end to AMD which is only 1% of the world’s cause of the total picture. What about the other 99%?
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Sue sees her retinologist regularly unless she has a change that she’s concerned about in which case she sees him more often. Her geographic atrophy (advanced AMD) is bad enough that she wonders if the good thought is that maybe her vision loss has stopped. But then there’s the bad thought.
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One of our readers asked a question about where to get the telescopic glasses that Sue uses to watch TV & do similar tasks. In tracking down the MaxTV glasses by Eschenbach, Sue found a pair that was quite a bit cheaper so she ordered them. This is her review of them and some information about several text-to-speech readers.
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This is the final page in Sue’s response to a follower who brought up the subject of what happens to communication when a visually impaired person cannot see nonverbal cues. Can we learn to recognize emotional content by listening to a person’s voice?
Improving Communications: Part 3
Sue continues to write about communication when visual impairment reduces the ability to interpret visual cues. Who is responsible for ‘fixing’ it when there are problems?
Improving Communication: Part 2
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We are always happy to receive questions from our email followers and Facebook group members. Sue has written 3 pages about a recent observation/question about how isolating it can be to not be able to pick up on social cues because of visual impairment. Here’s the first page…
Improving Communication: Part 1
What happens when the screen reader software you use doesn’t work and you can’t read the small print on its support page? Sue shares her advice – and frustrations – to get you read to…
If you’ve been reading Sue’s pages, you know that she is not a homebody (one definition I found is “a person who likes to stay at home, especially one who is perceived as unadventurous.”) She offers some advice if you are…
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21. Attention Walmart Shoppers published March 13th, 2016
22. How to Win Friends & Influence People the DBT Way published March 14th, 2016
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19. Sim City for Low Vision Folks published March 13th, 2016
20. I’m Baaacccckkkk! published March 13th, 2016
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Have you caught yourself saying the phrase “Yes, but…” when someone has offered you a solution to a problem? If you do a search on it, you’ll see it referred to as a syndrome that is all about the fear of stepping out of our comfort zones. Sue has another theory.
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17. Advice from Scarlett published March 7th, 2016
18. Dear Amazon: A Love Letter published March 13th, 2016
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We love to hear from our readers. One of our Facebook group members left a comment before her first injection for wet AMD and then emailed us after. We got her permission to share part of her story about…
Do you have wet AMD? Would you like to tell the story of YOUR journey? We are always looking for guest authors so that we can represent as many perspectives as possible. Contact Linda at light2sight5153@gmail.com to find out how to join our team.
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15. Tech Talk published March 3rd, 2016
16. Crazy Like a Fox published March 5th, 2016
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13. A Human Doing published February 28, 2016
14. Out to Lunch published February 29, 2016
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