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From Diagnosis to Decision – June 2023 Since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made.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.
It’s May in real-time but Sue wrote this at the beginning of February when she was sick and bored and all she wanted to do was go cross-country skiing.
Title & publication date
11. Teacher, Teach Thyself published February 28, 2016
12. A Tutu and a Tiara published February 28, 2016
Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.
Find out how Sue uses a charm bracelet to talk about life in terms of perseverance.
Have you figured out that Sue is a history buff? What does a war in 1939 between the people of Finland and the USSR have to do with AMD? Read about the…
One of our Facebook group members asked me a question about whether there is a connection between AMD and autoimmunity. Sue did some research and this is what she found.
AMD & Autoimmunity – A Connection?
Title & publication date
9. What Do I Do Now? published February 28, 2016
10. It Just Happens published February 28, 2016
Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.
Title & date first published
Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.
Title & publication date
7. Super Lab Rat published February 26, 2016
8. A Perfect Storm published February 28, 2016
Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.
Have you come from the light into a dark room? How long does it take for your eyes to adapt so you can see? There is evidence that this can be a very early indicator of AMD.
Title & date first published
Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.
You have probably heard the adage “Whatever can go wrong will.” Sue talked about that one in a previous page. This page is about the corollary “Anything that CAN’T go wrong will.”
Title & date first published
Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.
We are going to be re-publishing Sue’s early pages as a way to help new members get a start with reading them and to encourage those of you who haven’t read them for some time to take another look.
Title & date first published
Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.
Have you found yourself thinking things like “I should have taken better care of my eyes” or “I should be independent”? Sue talks about guilt in terms of justified vs. unjustified emotions in DBT terms.
Sue is always looking for services to help those with low vision or who are blind. She shares information for US veterans. There’s also information about a similar group in the UK.
Sue shares this theme from a yoga session.
Sue shares DBT concepts regarding emotions. She includes a study that says that to avoid a depressed mood, a person should not get so introspective.
You may have heard the phrase ‘oxidative stress’ as a cause of macular degeneration. What is it? Sue’s chemistry background is limited but she cobbles together an explanation of how atoms and electrons and antioxidants could possibly interact.
Sue wrote this page just short of a year from the time she started to work with Pennsylvania’s Office of Vocational Rehabilitation (OVR). She previously wrote about the devices she uses on a normal day when she’s not at work (there is a link to that page in this one). This is what she uses in a typical day at work.
You may have heard the saying “Denial is not just a river in Egypt” (and variations of it). Sue talks about denial from a psychological perspective. Are there other defense mechanisms that are more effective?
As a school psychologist, Sue works with kids with challenges and she tells us how they react to HER challenges! She also updates us on aspects of the stem cell clinical trial she is waiting for and reminds us what RPE stem cells can and cannot do.
Yesterday Sue talked about how a higher body mass index (BMI) is linked to a higher risk of vision problems. Today she tells us to…
It’s no secret that Sue is an “exercise nut” (her words). Research has shown that being overweight can increase one’s risk of AMD and that engaging in vigorous exercise 3 times a week can reduce the progression of the disease. Sue’s not overweight & she gets that kind of exercise yet she has advanced AMD. So, has her exercise obsession helped at all? Those are…
How does your body affect your mind and vice versa? Can your posture affect your mood? Sue tells us that it can.
When I shared Sue’s page “You Don’t Look Blind!” (about some of the upsetting things that people say to people with macular degeneration) with the members of our Facebook group, the subject generated some good discussion. This is Sue’s response and some more suggestions on how to deal with it.
