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From Diagnosis to Decision – June 2023 Since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made.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.
We continue to share quotes from Sue’s journal pages in anticipation of our 2nd anniversary on February 25th. We hope this will encourage you to explore our ever-growing website that has over 500 journal pages and over 600 posts!
Sue’s Musings Then and Now – Part 2 – 1/20/2018
I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend? If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com. Thanks!
This is the third year that Sue has provided US Federal Tax advice for those with visual impairment because…
It’s That Time – Tax Time – Again!
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
February 25th is the 2 year anniversary of our website. During these 2 years, Sue has written over 500 journal pages and there have been over 600 posts! We have been busy, haven’t we? ::smile::
With all that content, we know it is hard to know where to start if you’ve not been following from the beginning. In honor of our anniversary, from now until February 25th, I am going though the journal pages and highlighting some of Sue’s words to help you find pages that may be helpful to you. There may not be a post in this series each day.
Sue’s Musings: Then and Now – Part 1 – 1/18/2018
I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend? If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com. Thanks!
Skiing is something that Sue loves to do. It, however, evokes one day on the slopes 2 years ago that she associates with vision loss. That hasn’t stopped her, she went 3 times last year and hopes to do the same this year. It may not work out well but at least she’ll be able to say she tried. And she advises caregivers/family/loved ones to…
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
Sue continues to try the app Seeing AI. She tried the scene and person recognition options and she was…
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
February 25th, 2018, was the 2-year anniversary of our website. During these 2 years, Sue has written over 600 journal pages and there have been over 600 posts! We have been busy, haven’t we? ::smile::
With all that content, we know it is hard to know where to start if you’ve not been following from the beginning. In honor of our anniversary, I started going through the journal pages and highlighting some of Sue’s words to help you find pages that you want to read. There may not be a post in this series each day.
written Jan. 18th, 2018
Next: Sue’s Musings: Then and Now – Part 2
Sue writes “How can sight loss be a challenge? Challenges have a chance of being overcome. How am I going to overcome THIS ? I cannot accept this. I can never resign myself to going blind!” Read more about…
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
Whoops, I need to correct this sentence in my previous post: “Both [Bob & Sue] have been accepted into clinical trials investigating treatments for advanced AMD/Geographic Atrophy (GA). ” Sue has not been accepted into clinical trials at Wills Eye Hospital, she has been referred. Unfortunately, that makes a difference.
Sue and Facebook group member Bob O’Connell have the same highly-respected ophthalmologist Dr. Carl Regillo at Wills Eye Hospital in Philadelphia, PA. Both have been accepted into clinical trials investigating treatments for advanced AMD/Geographic Atrophy (GA). Read Bob’s story to find out how he got to this point and how he’s come to a decision about one of the clinical trials. And find out what he means by…
We are looking for people to write for our project. All you have to do is to write your story and a short biography, send it to me and I will edit it and put it into the appropriate format for the website. You may be surprised at how good it feels to share how life has been for you, the good news and the no-so-good news, since your diagnosis. These stories give assure others that…
A few days ago I published a post from Facebook group member Vickie Hoecherl who compiled quotes from a recent article: Do our choices or our genes impact the development & progression of AMD? She has written about her journey with AMD for our Guest Authors section. You find her story here…
We are looking for people to write for our project. All you have to do is to write your story and a short biography, send it to me and I will edit it and put it into the appropriate format for the website. You may be surprised at how good it feels to share how life has been for you, the good news and the no-so-good news, since your diagnosis. These stories give assure others that…
Sue has been very busy so there hasn’t been a page published every day. She is facing a major life decision, one that she would have eventually faced but has come sooner partly because of the changes in her vision. She asks the question “…how do we know when it is time to give something up? A job, a car, whatever.”
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
It’s a new year. How optimistic are you that 2018 is going to be a year when there will be great strides in our understanding of how the eyes work and knowledge of what can be done when they don’t work properly? Sue writes “So, optimistic about 2018? Oh, yeah. You just gotta believe. Every small step is progress. Once again: this is the best time in history to be going blind.” Read why she is…
Coming soon…A new Guest Author page with the highlights of an Award Lecture from December 2017: “Macular Degeneration Epidemiology: Nature-Nurture, Lifestyle Factors, Genetic Risk, and Gene-Environment Interactions – The Weisenfeld Award Lecture”.
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
Sue tests the currency reader, barcode scanner and handwriting reader in Seeing AI.
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
Sue continues to try the text reading features of Seeing AI compared to KNFB Reader. She adds another text-to-voice app NaturalReader
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
I asked Sue to check out the new version of Microsoft’s Seeing AI. In this first page of the series, she tries the light perception and color identification options. Since she also has KNFB Reader, she compared Seeing AI’s short text option to a similar feature of KNFB Reader.
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
With all the stress she’s had, Sue is sick. I’ve asked her to look at the upgrades to the app Seeing AI from Microsoft but first she is taking her mother’s advice on how to get rid of her infection which was to…
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
Sue writes “I know none of you fine people ever feel sorry for yourselves, but bear with me while I work through this; OK??” She gives us a pep talk and concludes that she can do this one more time…
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
I’m sharing 2 of Sue’s pages from last year about the holiday season. They are not happy times for everyone but they do give us reason for HOPE!
When Sue’s vision declined 2 years ago, she began to investigate what research was being done into AMD specifically geographic atrophy which is what she has. She is within driving distance (90 miles) of Wills Eye Hospital and Dr. Carl Regillo who has conducted significant research in the study of AMD. She has been seeing Dr. Regillo every 6 months and is being considered for 1 of 2 clinical trials (or is it 3? Hard to keep track). There have been many delays. There may now be actual progress and she’s wonder if being Super Lab Rat will finally be…
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
The puppies strike again! Find out what the puppies have to do with the vagus nerve and…
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
Sue says she’s had a few days where she wasn’t “up to par”. She’s done some research on self-compassion which has led her to conclude “What it boils down to is this: see yourself for what you are, accept yourself, be your own best friend and remember, we are on…
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
I apologize that I’m late getting this page out. I was without power this weekend for 55 hours due to an unexpected snow storm in NW Georgia and I am only now getting caught up. Thanks for your patience. – Lin/Linda…
Sue continues to update us as to how her 2 puppies are progressing. Are the problems that occur due to her visual impairment? Catch up on…
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
What would you do if a friend, family member or co-worker told you that they have had an eye bleed for the past 3 days? What would you do if they refused your advice? Sue writes…
After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends. We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.
We’ve compiled the first part of a series of Sue’s Best Pages. If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.
Sorry, just found that the link below wasn’t working yesterday.
Sue writes “If 2016 was the year of change and challenge and adaptation, 2017 has become the year of The New Normal.” What does that mean?
Do YOU have reflections on 2017? Wishes for 2018? Tell us what they are in a comment below.
Sue writes “If 2016 was the year of change and challenge and adaptation, 2017 has become the year of The New Normal.” What does that mean?
Do YOU have reflections on 2017? Wishes for 2018? Tell us what they are in a comment below.
