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Author: Linda Moore
Happy New Year 2022!
Can you believe it’s the start of another year? I don’t know about you, but the older I get, the faster time seems to fly. My parents and others told me about it, but of course I didn’t understand. Now I do!
Sue writes a ‘Happy New Year’ message every year. We started this site in January 2016, so this is her 6th one!
What’s New for 2022?
If you haven’t joined my Facebook group, this may be the time to do that. A week ago, Sue joined me for a live Zoom session to introduce her to the group. Doesn’t that seem funny considering some of you ‘met’ her way back in 2016?
We have some big plans this year. On January 8th, 2022, Sue will be doing her first of 3 (or 4) Zoom sessions with the group on ‘Coping with Anxiety, Depression, and Worry.’ She’ll help us to learn how to use the tools from DBT which she’s written about since the beginning. These are tools she uses as a psychologist for her clients, but more importantly, she used on herself when she needed acceptance, mindfulness, and distress tolerance.
To learn more, join the Facebook group. If you are already in it, go to the Events section at the top of the group’s page.
More Zoom Sessions
Professionals
In December, we had Facebook Live sessions with Dr. John Nolan of the Nutrition Research Centre Ireland who is a carotenoid researcher, and Dr. Amanda Legge who is an Optometrist who specializes in early diagnosis and management of AMD.
In the near future, we’ll have Zoom sessions with Dr. Jim Stringham, another carotenoid researcher who has been in the ocular nutrition field for 30 years, a retinal specialist who will talk about eye injections, and a team of low vision therapists to share some of what low vision therapy does. Dr. Legge will also return with more about the management of AMD.
Members Supporting Members
We have an AWESOME group of almost 6,000 members! We’re working on Zoom sessions where members will do ‘show and tell’ sessions with their favorite low vision devices, tips, recipes, and more. Not only that, but we’ll get together to talk about what the pressing challenges are of having the disease. I also have an idea of how we together can let eye doctors know that when a person is diagnosed, they need to be given INFORMATION to help them start their journey.
The Importance of Carotenoids for Healthy Eyes and Brain – December 14th, 2021
It’s Linda back after a few false starts!!
I’ve spent 2 months researching the role of the 3 carotenoids lutein (L), zeaxanthin (Z), and meso-zeaxanthin (M; LMZ) in eye and brain health. Why? Partly because both my husband and I have a family history of BOTH AMD and Alzheimer’s/dementia! We want to avoid both diseases, of course!
It wasn’t long, though, until I found that the research by Dr. John Nolan of the Nutrition Research Centre Ireland done over 20 year – his entire career – has proven through solid scientific methods that LMZ is of benefit to EVERYONE with or without AMD, with or without cognitive issues.
I put together a post with comments for my Facebook group and then decided it should also be here (with Sue’s blessing) so it’s easier to read or to listen to.
Here’s the link to Part 1. You’ll find links at the bottom of each page to get to the next one.
Personal Message December 11th, 2021 Our Genetic Guns: Part 1
In memory of our parents: Harry Chernek had AMD/geographic atrophy while my mother Genevieve Chernek had Alzheimer’s Disease. Elizabeth ‘Ibbie’ Moore had both AMD and dementia. Her husband Jacob Dutton Moore was her number one caregiver while he had his own health challenges. They were very much loved and are very much missed.
Whoops!!! I JUMPED the gun – and not the genetic one!
Linda here.
I know it’s been some time since you’ve heard from us, so the previous email may have come as a surprise…
…it did to me, too, when I went to ‘save’ part of a project I’m working on, and I realized it was sent out!!
I’m sorry, but please ignore the first part – for now! It won’t be ready for a few days. That is, unless you’re in the Facebook group in which case you MAY see it tomorrow!!!
Thanks for understanding!
Sue’s Great Adventure: Getting There! September 9th, 2021
Sue loves to travel. She says she’s been “itchin'” to go somewhere. Her friend Vickie came to the rescue with an invitation to visit her in Colorado, to which Sue replied, “Heck yes!” or something like that. ::smile::
This would be Sue’s first solo trip on a plane as a VIP (visually-impaired person). You can read her 3-part series which includes Packing, D Day aka Departure Day, and Landed:
Who is Sue?
She’s my friend of 40+ years who became legally blind (20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other) from advanced dry AMD/geographic in 2016. After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life. At age 68 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels locally and abroad, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and new friends she’s been making along the way!
Sue’s New Pages June 5th, 2021
Sue is itching to travel. She’s been invited to visit a friend who lives on a Caribbean island where she’d have access to a golf cart to get around. Can she safely drive one with her Geographic Atrophy? Her daydreams about that took her back to being driven by her grandfather, who was scary behind the wheel. That led to research about how someone can get safe driving evaluation and driving rehabilitation.
Daydreams About Driving – Part 1 Link for part 2 at the bottom of the page – and there is AUDIO narration!
Sue’s Other Pages About Driving
In the Beginning – the story of why & when she quit driving 5 years ago.
Better Safe Than Sorry – where she talks about unsafe drivers who have caused accidents and shouldn’t be driving while she is NOT driving.
Mailbox or Child? – Sometimes reliable transportation is hard to come by. She contemplates driving, but then admits that she can’t clearly see things along the road, so what if that mailbox darts in front of her! Whoops, it’s a child!!
Sue’s New Page April 26th, 2021
If you have a visual impairment which can include a blind spot or spots, you may have experienced what Sue has. Even without them, have you looked for something specific and not found it only to realize later that you thought it was in a specific package and that is why you missed it?
Who is Sue?
She’s my friend of 40+ years who became legally blind (20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other) from advanced dry AMD/geographic in 2016. After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life. At age 67 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels locally and abroad, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and new friends she’s been making along the way!
Sue’s New Page 3/25/2021
Never let it be said that we don’t provide practical advice for a wide range of issues! Sue tells you…
Sue on Assignment – Special Topics
In September 2018, Sue decided that she’d take a break from writing the regular journal pages she’d been doing since February 2016. In her page ‘Taking Some Time Off’ she wrote, “Bottom line here is this: the angst is gone. I have settled into my new normal. It is pretty much like the old normal in many ways. One of those ways? It is boring.”
She didn’t want to stop writing, so she wanted assignments. I gave her some:
- AREDS2 research study and geographic atrophy (GA)
- How to conduct an experiment on yourself
- Photobiomodulation (light treatment)
- Coping fatigue (yes, there is such a thing)
- How she sees what she sees
- Non-genetic causes of macular degeneration
- What independence means to her
- and more!
She’s also investigated the supplements resveratrol, astaxanthin, bilberry, and CBD oil.
You can find these on ‘Sue on Assignment: Special Topics.’
Sue’s New Page March 15th, 2021
Sue’s journey with AMD began before 2016, but it was early that year when she began to write about it. It was also when she got assistance to help her to continue to work. In Pennsylvania, that came from the Office of Vocational Rehabilitation’s (OVR’s) Bureau of Blind and Visual Services (BBVS). Through them, she received what she calls her ‘toys’ and training to use them. I call those toys her toolkit.
They helped her find a CCTV, a Smartlux handheld video magnifier & reader, and MaxTV telescopic glasses. For her iPad mini, she found free apps to do things like magnify.
She was using her CCTV almost every day. She used her iPad to watch her favorite TV shows and movies and to listen to free audiobooks through the BARD app from the National Library Service. At her job, she had been using the ZoomText on a desktop computer. She’d explored the apps NaturalReader and KNFB Reader.
The tools in her toolkit haven’t changed much. She continues to use her CCTV almost daily which is a device she recommends to those with low vision. One of the ‘toys’ she still loves is her iPad where she watches TV shows and movies, listens to audiobooks through the BARD app, and sometimes uses the text-to-speech apps. At work, she continues to use a PC with ZoomText.
I think that what is important is what she said:
“I guess what I am saying is don’t give up on learning how to deal with your vision loss. Human beings are very adaptable creatures. You will be amazed what you can do when you try.”
What’s in YOUR toolkit?
Let us know!
Sue’s New Page February 25th, 2021
It’s my fault, not Sue’s, that we haven’t put out any new pages in some time. Things are hectic here in my world which includes the very active Facebook group. Lots of things to chat about, stories to tell, and questions to ask and answer. If you’re not in the group, I hope you’ll consider joining us. It’s where you’ll find me most days.
Sue’s been digging through the article ‘Treatments for dry age-related macular degeneration and Stargardt disease: a systematic review.’ The author Waugh and his colleagues scoured the profession literature looking for promising research. They found a lot of bad science and a couple of treatments that were tested using good science and may have promise.
Sue’s been approaching it from the perspective that we are a wolf pack. Instead of being preyed ON by people who promote treatments that aren’t backed by solid, scientific evidence, she likes to think of being the PREDATOR. She writes, “I like to think of myself as the wolf. The wolf scans for the best target for the hunt. He evaluates his odds of catching and killing his prey. He works with the pack on a common objective. The pack is persistent. The pack is relentless. They understand a successful hunt does not always mean a quick and easy kill.” We are the pack.
“I know we are hungry for treatments for AMD,” Sue writes. “I would like to think we are cunning enough to pick good targets in our hunt for these treatments. I want to believe our hunger will not lead us to be deluded by some ‘quacker’ offering empty promises…and a quick buck for himself.”
The Complete Wolf Pack Series
You can choose each page individually or go from one to the next using the option at the bottom of each page.
Just like this page, each of the pages below have audio narration available!
The letter A is for acupuncture. Bottom line: “In 50 years of study, nobody has been able to prove it works for AMD. All of the “evidence” has been hearsay.”
The letters B & L for blue light and laser. Bottom line: maybe, maybe not.
NEW! The letters M & N for microcurrent and night-time light. Bottom line: for microcurrent, there’s no solid, scientific proof. For night-time light, there is research planned.
NEW! The letters T, O, and R for telescopic lenses, ozone and rheopheresis – The Final Letters! Bottom line: looks good for ‘T’ but not for ‘O.’ For ‘R,’ you’re kidding me!
My Macular Degeneration Journal 