Author: by Lin/Linda

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!!

Never let it be said that we don’t provide practical advice for a wide range of issues! Sue tells you…

I Passed My Poop Test!

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 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.

Her Original Toolkit – 2016

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.

Sue’s Toolkit – 2018

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.

Sue’s Toolkit – 2020

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!

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!

It is almost a year since the world was taken hostage by the COVID-19 virus. Sue and I have both been more than a little distracted, we admit. We recently found 2 of Sue’s pages written in March 2020 – ‘The Lost Pages’.  Luckily, the topic of this first one isn’t time sensitive: there are people out there trying to take advantage of us. Sue found a book that has a chapter on these so-called treatments that have ‘bad science’ or ‘no science.’ She refers to these predators as wolves looking to find the weakest among us. We need to stick together as…

The Wolf Pack and the Letter A

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!

As 2020 ends, we look forward to a much better 2021! I read a comment that this year we can truly say that “hindsight is 2020!” ::smile:: It will be good to see it in the rearview mirror.

Sue once wrote that we are in the ‘hope business.’ So what reasons are there for hope in the new year? There are many! Read or listen to:

Happy New Year 2021!

Just the FAQs

If you are in the Facebook group, you know that there’s a section of our page with Frequently Asked Questions – FAQs as they are commonly called (pronounced just like ‘facts’). Sue is helping me improve them as I copy the information to this site.  Here are 2 new ones:

Can staring at a computer or other electronic device make my AMD worse?

What are the stages of AMD?

2020 – what a year! I don’t think I have to list all the things that have gone on and are going on that have made this year, well, remarkable – but not in a good way! How do we manage to get though all of this with our sanity intact? I asked Sue.

Forward Through Adversity (audio narration is available)

Just the FAQs

If you are in the Facebook group, you know that there’s a section of our page with Frequently Asked Questions – FAQs as they are commonly referred to. Sue is helping me improve them as I copy the information to this site.  Here are the first 2 which are the 2 most often asked questions:

Will I Go Blind?

I have AMD. What’s my chance of having vision loss?

Last week I told you about a new feature on our website. I now have added audio narration to 5 of Sue’s journal pages. I hope you will check them out:

1. In the Beginning
2. In the Beginning Revisited 2018
3. Happy Anniversary 2020 – Celebrate Your Successes
4. One Foot in Front of the Other
5. Why Read My Pages? My Answer [Sue’s answer, that is]

How do you access them?

Look at the list of things you can find on the website – it’s called the ‘menu.’ In this image, you’ll see a red box around ‘Journal Pages With Audio.’ This is the option to choose for access to these pages.

Coming Soon!

I will be sending an email each time I add more audio narration. In the meantime, try it out. I hope you like it.

Questions?

If you have any questions about this, please let me know at light2sight5153@gmail.com.

Lin/Linda here.  Along the way, I’ve had requests to add audio to Sue’s journal pages to convert the text to speech. I’m working on that, finally. The voices you hear aren’t ours. Through the wonders of technology, you’ll be hearing synthesized voices of Joanna (Sue) and Kendra (me) from the app that I am using.

I wanted to use the word ‘podcast’ to refer to this project of adding audio narration to some of our pages. However, it seems that not everyone knows what that is. The dictionary says “A podcast is an episodic series of spoken word digital audio files that a user can download to a personal device for easy listening.” The word actually came from combining ‘iPod’ and ‘Broadcast.’ An iPod is an Apple device for listening to music and other audio files.  Many podcasts are set up in apps such as Stitcher and Spotify. I may be able to create a podcast channel on one of them but for now, you’ll find audio files on our website that you can listen to and can download as well as see the text on the page as it’s always been.

How to Know a Page Has Audio

There won’t be audio on all the pages. If there is audio on a particular page, you will see what we’ll call the ‘audio bar.’ Look at the top of the page for the audio bar.

If you’ve watched videos or listened to music online, you may recognize the dark triangle pointing to the right at the beginning of this audio bar.  This is the ‘play’ button. Select it and the audio will start to play. You will see how long it is. Most of them are under 5 minutes.

If you want to pause the audio, choose this symbol. When you do, you’ll see the ‘play’ symbol again.  Every time you choose, you get the previous symbol, so if you choose the symbol 4 times, you will see ‘play’, ‘pause’, ‘play’, ‘pause.’ This is often referred to as ‘toggling.’

Volume

As the audio plays, you will see the symbol of a speaker at the end of the solid bar. Choose it and you can adjust the volume. You will see a solid dot to the left of the speaker symbol. This is called a ‘slider’ because you can slide that dot to the right and left. For full volume, the dot should be all the way on the right. When you slide it to the left, it decreases the volume.

If you choose the speaker again, it will turn to the symbol of a speaker with a slash over it which means the volume has been muted/silenced. Every time you choose the speaker symbol, you’ll toggle between volume and mute.

Download the Audio File

At the very end of the audio bar line you will see 3 dots stacked vertically.  Choose it and you will see the word ‘download’ so choose it. Depending on what device you are using, you’ll be asked where to save it.

What Now?

Problems? Comments?

If you have a problem or a comment, you can share it here or send me an email at light2sight5153@gmail.com.

You may have seen images where a big black ‘blob’ is shown in a photo, but that is not the experience of most people with the advanced stage of macular degeneration. This is not to minimize the impact of advanced macular degeneration, but to hopefully dispel some of the misinformation out there and to help explain the experience to others.

Sam with Stargardt’s Disease

Sue with Geographic Atrophy

Sue has advanced dry AMD/geographic atrophy. I asked her to watch Sam’s video and write how it relates to how she sees things. She agrees that is pretty much how she sees with AMD as she describes in her journal page Filling in the Gaps.

When last you heard from me, it was March 10th. It was before we knew what COVID-19 was and how it would affect our lives. I said that we were still here and would be continuing to add to our website. “The best laid plans of mice and men often go awry.” ::sigh::

What has changed for us? Sue was sent home and told to learn how to use technology to continue her job as a psychologist and to keep attending her exercise classes. She had a rough start (she’s not a big fan of technology) but has been doing both things…and more.

As for me, early March brought a series of unexpected, upsetting events that I was trying to recover from which has been a slow process. When we were told to stay at home, my life in general didn’t change much. Because I have so  many risk factors, I’ve been home since then except for one in-office doctor visit. After last year’s ‘surreal ordeal’ that put me in the hospital several times, I really do not want to get sick again.

The Facebook group has continued to grow but more slowly than ‘before’. I’ve been trying to help us all adjust to the ‘new normal.’ For those with macular degeneration, that meant some initial uncertainty about getting needed treatment especially for those who had been getting regular injections for wet AMD and other types of macular degeneration. Once people figured out what was going on – including the medical providers – everyone has gotten the treatment that they need while remaining as safe as possible.

What Now For Us?

Good question.

After 4 years of doing what we do, we’ve amassed a LOT of information. As I write this, Sue has written 670 journal pages! I’ve created almost 40 units in the Facebook group which are like lessons in a course or chapters in a book.

We need your feedback about what you would like to learn more about. Or is it time for us to consider this website to be more of an archive than an active source of new information? You tell us.

Here Are Our Questions for YOU

• Is there something you’d like to have Sue write about? Any general or specific questions? How she does something? What she thinks about a certain topic? That could be dangerous! ::grin::
• Are there any topics you want to know more about from my research and work with the Facebook group? Facebook is still the best place to chat. The website doesn’t make it easy to do.

Let Me Know

Email me at light2sight5153@gmail.com or leave a comment here.

This is Linda (or as Sue calls me in her journal pages: Lin). We’re sorry we’ve neglected you. We’ve both been very busy.

It was 4 years ago this month when we started this website. SO MUCH has happened since then: the good, the not-so-good, the bad, and a little of the “Terrible, Horrible, No Good, Very Bad Day.” Luckily, not very much of the latter and not recently, thank goodness!

Our plans are to try to add more to this website. Not every day as we did in the first few years, but more often than we have been.

Here are our questions for YOU:

• Is there something you’d like to have Sue write about? Any general or specific questions? How she does something? What she thinks about a certain topic? That could be dangerous! ::grin::
• Are there any topics you want to know more about from my research and work with the Facebook group? At almost 4,000 members still going strong!)? Facebook is still the best place to chat. The website doesn’t make it easy to do.

Let me know. Email me at light2sight5153@gmail.com or leave a comment here.

We look forward to hearing from you.

Four years ago in February 2016, Sue and I started our website.  She has been sharing the details of her journey with advanced dry AMD/geographic atrophy. I’ve been helping with the research and adding resources. We had no idea where it would lead us. Here we are, almost 700 pages later and with a Facebook group of almost 4,000 members! We both are also celebrating the one-year anniversary of our work with the Health Union site maculardegenetion.net as Advocates (she’s a Patient Advocate & I’m a Caregiver Advocate) and Contributing Authors.  Would it be cliché of me to say, “We’ve come a long way, babies!”? ::smile::

Happy Anniversary 2020! Celebrate the Successes!

Our Facebook Group

Sue writes, “To the question – implied – if you can get where I am now, I would say “Yes”. Many of you can. If you cannot find anything you need from me, lean on other group members. Ask them for guidance. Forge your own path. Just keep on moving forward.”

Have you joined our Facebook group ‘Our Macular Degeneration Journey’ yet? Things have slowed down dramatically on our website, partly because Sue is too busy living her full life, partly because I’m busy with the Facebook group! Join me there to get both education and support! You will find that you are NOT alone!

Here we are again looking forward to the beginning of our 4th year with you. Sue reviews 2019 and shares her hopes for 2020.

Happy New Year 2020

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 66 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 and new friends she’s been making along the way!

There’s a quote that is making the rounds of the Internet which is supposed to give us ‘the rules of life.’ One of them is ‘expect less.’ That stuck with me because it’s not something I agree with.  I asked Sue for her thoughts. We both agree that it is better to…

Expect More, Not Less

We both wish you a blessed holiday, however you celebrate it.

Today is Thanksgiving day in the US. Sue and I thank you for continuing to follow our website and Facebook group. We are on this journey together. You are NOT alone!

Sue has a group of women with whom she’s been friends for a LONG time! Like many of us, she is separated from them by distance and tricky scheduling. They did get together recently, but there was a very important, albeit sad, reason. She recommends that we all…

Rage Against the Dying of the Light

Spoiler Alert – why should you read Sue’s Journal Pages?

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 66 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels locally and abroad, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

Sue is a psychologist who uses and teaches a type of therapy called Dialectical Behavioral Therapy (DBT). It started out as a therapy for personality disorder, but has been adapted for use with other conditions. It really is a way to teach people to cope with stress, regulate emotions, and improve relationships with others.  She’s teaching her students about myths which basically are expectations for “people like us.” She found a GREAT but maybe unexpected way to demonstrate the concept!

Good People Do Have Vision Loss

Who is Sue?

She’s my friend of 40+ years who became legally blind (20/63 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 66 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 and new friends she’s been making along the way!

Sue’s recently back from yet another trip and another cruise even though she usually gets sea sick.  What is it about cruises that she recommends?

Rocking and Rolling

Our Facebook Group

One of the reasons that there aren’t a lot of posts from this website lately is that our Facebook group keeps me busy.  Currently, we have 3,600 members with various types of macular degeneration (most have AMD) and with varying visual challenges. We also have many caregivers in the group. The purpose of our group is to provide both education and support, two things we think are critical to living a full and meaningful life.

Come join us! I don’t think you’ll be disappointed!

Our Facebook Group