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From Diagnosis to Decision – June 2023 Since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made.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.
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.
Sue has been writing about her experience with AMD for over a year (probably 300 total pages) and one of the recurring topics is that of depression and anxiety. One of the aspects of that topic is that of the feeling of hopelessness. Today she offers advice from her personal and professional experience.
Low vision is one of those ‘invisible illnesses’ that are often misunderstood by others. Sue’s heard things like “It’s getting better, isn’t it?” and …
Sue has always been energetic & her decline in vision has not changed that. And she is not the only one, there are quite a few people who participate in …
Yesterday Sue wrote about being optimistic. Today she talks about her…
I’ve known Sue for 40 years and she has always been an optimist. Has that changed because her vision has changed? You can judge that for yourself.
What happens when you break the frames of your eyeglasses when your lenses are fine & cost you an arm and a leg? It’s not as easy as popping lenses into just any new frames as Sue found out.
There are days when the events in Sue’s life seem to conspire to stress her out. That was what happened this day but Sue used her DBT skills to prevent that from happening.
You don’t have to give up reading newspapers. Sue’s found several services to help you keep up unless you are looking for…
This certainly shows that we haven’t caught up with Sue in real-time! Did YOU make any resolutions for this year? How are they turning out?
We just celebrated Easter and Sue is telling us Happy New Year! Will we ever get caught up? ::grin:: It doesn’t really matter because the subject of Sue’s page is about having FUN and that’s applicable any time. And you get to hear another story from our college days and …
Did you know that there are alternative ways to stay current with the news? Sue tells us how to get…
Seems strange to read about Winter weather on this lovely (where I am) Easter Sunday! Find out what Sue did on a day with a…
Like some of you, Sue had to quit driving when her vision worsened. One of her biggest challenges has been to get reliable transportation to the many places she goes on a regular basis. She felt very vulnerable when she had to ask…
Sue wrote this page last December but it’s very pertinent to recent stories of people being mislead & harmed by claims of cures that aren’t here yet. Yes, we want these cures, there IS hope and we’ve sent out an…
There’s nothing much I need to say except that Sue tells us what she considers to be a life worth living and asks what that means to us.
With all the serious issues in the world – and in your eyes – we thought you could use some humor. First, we think that we…
A few days ago in real-time, an article was published that found “high levels of undiagnosed anxiety and depression persisting in patients receiving treatment [anti-VEGF injections], despite their improved visual outcomes.” Does that surprise anyone? It certainly didn’t surprise Sue!
Sue has been waiting…and waiting…and waiting for confirmation that she’ll be part of one of the 2 stem cell clinical trials for AMD that are to be held at Wills Eye Hospital in Philadelphia. She’s not fond of dealing with bureaucracies but she knows what she should NOT do.
Correction: yesterday I said that Sue & her husband had a chimney fire. It wasn’t a fire, it was a clogged chimney. Sorry about that.
