Author: light2sight5153@gmail.com

ARVO is the Association for Research in Vision and Ophthalmology and they have yearly conventions.  Sue shares some of what was discussed this year. They were lucky to get to Hawaii before the terrible volcanic activity started.  It’s no surprise they refer to this conference as the…

Hawaiian Eye

Did you know that our website has a LONG list of resources?  Here are the topics from the Resources page:

• Links We Like
• See what vision is like at the various stages of AMD
• What is AMD?
• Glossary
• Websites devoted to AMD
• Websites containing information about AMD
• Support groups
• Where to find services
• Books & reading materials
• Videos
• Personal stories of living with AMD
• Online newsletters
• What is Stargardt’s Disease?
• Science Stuff
• Symptoms
• Possible causes/contributing factors
• Treatments
• Research/clinical trials
  • How can I become part of a clinical trial?
• Coping with vision loss
• Self-maintenance/ self-care
• More to come…

If you find a link that gets to a ‘page not found’, please let me know.  I should be checking them regularly but to be honest, I don’t have the time!

This isn’t a new topic but one that is worth repeating as many times as it takes to convey the message.  Earlier in May, the FDA filed an injunction against three stem cell clinics whose treatments were not FDA approved.  You’ve probably seen the article about 3 women who were ‘blinded’ by stem cell treatments that they paid for.  Sue reminds us again why we tell you…

Please Be Cautious

It’s over 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

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!

Sue had a long holiday weekend to work on her ‘homework’ from a recent conference and she writes about how a text-to-speech app helped her with that. She also continues to deal with the health insurance issues she has as she approaches 65.  You know how busy she is and how important are her…

Catch-Up Days

Tell Your Story

One of our favorite blogs is called Girl Gone Blind written by a woman who found out at age 50 that she has Leber’s Hereditary Optic Neuropathy (LHON), a rare genetic condition causing sudden vision loss. It affects 1 in 50,000 people.  She has a website and a Facebook page so check her out.

She shared a recent page called 5 Benefits Of Telling Your Sight Loss Story.  Here are the headings for those 5 benefits but we hope you go to the page to read what she has written:

1) Your Story Educates And Increases Awareness.

2) Your Story Will Spark Connection With Others.

3) Your Story Is Worth Writing About.

4) Your Story Removes The Elephant In The Room.

5) Your Story Paves The Way For Others.

We encourage you to write your story and send it to us to include on our Guest Authors page.  You write the story, send it to me at light2sight5153@gmail.com and I’ll do the rest.

I recently shared a page by Dan Roberts that updates us on the status of research and developments in the field of AMD.  Sue and I agree with his statement, “Knowledge is the best way I know of to keep the fear of the unknown at bay, making living with low vision less stressful, and acceptance a little easier.” The monsters go away when we…

Shine a Light Under the Bed

Finding Services – US & Canada

There are lots of services available for those with vision impairment.  This is a GREAT website for those in the US and Canada –> Browse the AFB Directory of Services for People Who Are Blind or Visually Impaired.  In the right-hand column of the page, you will see ‘Narrow Your Search’ which you can use to search by state.  Here’s another page for those in the US–>U.S. Agencies, Centers, Organizations, and Societies.

Finding Services – UK

The Macular Society has services that you can find on their website–>Macular Society.  The RNIB is another organization that offers services in the UK–>Our Services.

Finding Services – International

There are organizations that offer support around the world–>International Agencies, Centers, Organizations, and Societies.

Have a Resource to Add?

Do you have a resource that can help our readers find services in their area?  Please tell us about it in the comments section.  Or email me at light2sight5153@gmail.com. Thanks!

 

 

Happy June 1st! As Sue’s 65th birthday approaches as does her retirement from the school where’s she’s worked as a School Psychologist for many years, she’s having to make quite a few decisions.  She shares some advice about handling…

Life’s Transitions

DIY CCTV

Have an Apple or Android tablet? Did you know that you can make your own CCTV using it and an inexpensive stand?  Both types of tablets have built-in accessibility features and available apps to use their cameras to magnify whatever the camera is pointed at.  You put the tablet in the stand with the camera pointed down so that anything you put under it will be magnified on the tablet.  You can also use a text-to-speech app to read any text you put under the tablet.

Click on the image to the left to go to the website for the Justand V2.

There is another option to make a customized stand for your tablet using a Modular Hose System.  Sue writes about it in her page  DIY CCTV which has links to a video by Sam of The Blind Life who reviews the system.

iPad to HD TV

You can connect your tablet to an HD TV so that whatever is on the tablet is shown on the TV.  You don’t have to have the tablet on a stand to do this. [Not sure you can do this with an Android tablet but you can with an iPad.]

To connect an iPad to an HD TV,  you need:

1. a TV with an HD (high definition – HDMI) port;
2.  a connector that connects the iPad to an HDMI cable; Click here to find the Lightning Digital AV Adapter – Lightning to HDMI 
3. an HDMI cable that goes from the iPad cable to the TV’s HDMI port.

Sue shares the step-by-step instructions in her page As If By Magic.

If you know how to connect an Android tablet to a TV, please tell us how in the comments.

 

If you’ve been reading Sue’s pages, you know that exercise is critical to her well-being.  After five days with no exercise at the professional conference she attended, she’s getting back to her routine.  The older we get, the harder it is to recover from detraining.  Despite the lack of physical exercise at the conference, it gave her a chance to use a quote about…

Old Age and Treachery

As May comes to the half-way mark (at the time the page was written), Sue continues to plan her summer.  On the subject of AMD, Sue reviews an article about the clinical trial process and what we need to watch out for (eg, trials that ask you to pay to be in them).  The author of the article shares some “extremely promising developments” in stem cell research.  There are incredibly brilliant people involved AMD research so…

How Can We Lose?

 

Sue attended a conference with four colleagues from the counseling center.  They bonded over several different cuisines, something that can be a special experience for those with vision loss.  At the very least it gives us something new to talk about.  So, we wonder…

Do You Like Thai?

She also writes about how she was able to get PDF documents of the copyrighted text for the conference, something that is allowed by law.  And last but not least, she shares the information in an article that outlines how this is the decade for those with inherited retinal disease.

Although the concept of ‘talking books’ has been around for MANY years – since the invention of the phonograph by Thomas Edison in 1877 – it wasn’t until the mid-to-late 1970s that they became available commercially.  1986 is considered a turning point (read more about it in Wikipedia).  Now the industry is going “where no one has gone before”…

Audio Holodeck?

Updated: Where can I get support?

I apologize that I’ve gotten behind with Sue’s pages.  You’ll know how far behind when you read her first line “Happy Cinco de Mayo!” and read about her getting ready for a conference that she’s been back from for a week!  She wrote about news of research pairing Eylea with an antibody with the hope of increasing its effectiveness while she was packing for the conference and declared…

I Need a Sherpa

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

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’s Best Pages: Part 1

Sue writes about…

That Little Summer Dress

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

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’s Best Pages: Part 1

Continuing with…

From the Inbox

Quiz Time!

Once again, the topic of the AREDS/AREDS2 supplements keeps coming up and there is still mis-information being passed around. I understand it’s a complex topic so we’ll just keep going over it. Test your knowledge.  The questions are all based on the AREDS and AREDS2 research (and related studies) after they were done.

Click here to go to the quiz and the answers.

Sue’s email inbox is usually full but she eventually gets to most of the ones about research into AMD.  She writes about two studies using anti-VEGF injections for wet AMD.

News From Research

It is so frustrating not be able to do things at home that you might have been able to do in the past and do safely.  There are some good tips for avoiding some of these things so that you can remain safe and independent. Here’s a good article with tips on:

• finding clothing that matches
• using the microwave control pad so you don’t burn your food
• avoiding falls on floors, over furniture and down steps by providing contrast
• chosing the right kind of lighting for the area and the task
• putting lighting where you need it, inside and outside
• cutting down glare that makes it more difficult to see
• finding out what low vision aids are available for the home and where to get them
• adapting each room in the house for your needs

There are some research studies that just don’t look like they’d be fun to be part of.  Sue & I both agree that this is one we wish we’d been part of!

Chocolate!

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

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!

It’s nothing new that Sue is busy.  It IS new that I have been, too.  I’m trying out a new work-at-home job in something new for me so the learning curve is steep.  The good news is that you’ll read that being busy is good for those of us of a ‘certain age’.

Busy, Busy, Busy

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

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’s Best Pages: Part 1

Sue has admitted that she’s not big on changing her diet.  But the recent research on the benefits of dark chocolate has her asking “And exactly WHY was I not informed about this study?”

Chocolate!

How can I listen to audiobooks without a computer, tablet or smartphone?

So you do not have a computer or tablet or smartphone but you want to continue to read?  Want to listen to audiobooks?

The US National Library Service (NLS) has a FREE service called Talking Books where if you qualify they will send you an audiobook player and audiobooks (also includes audio magazines). They have hundreds of thousands of titles that you can see here–>https://www.loc.gov/nls/braille-audio-reading-materials/online-catalog-search/

You can also find the library near you that has a special-format library service that can help you find the equipment and the audiobooks–>https://www.loc.gov/nls/braille-audio-reading-materials/find-a-local-library/

If you’ve been following Sue’s journey through her journal pages, you know that Sue is not a patient person.  She’s written that training 2 puppies is somewhat like dealing with vision loss.  Her advice for both is to…

Be Patient

Did you know that our website has a page of links to helpful articles & resources?  One of the sections has these links to “Websites devoted to AMD”:

• Macular Degeneration Partnership
• Macular Disease Foundation of Australia
• American Macular Degeneration Foundation
• AMD Alliance International
• Macula Vision Research
• Macular Society (UK)
• RNIB (Royal National Institute of Blind People; UK) 
• RNIB (Scotland)
• BrightFocus also Alzheimer’s & Glaucoma
• Macular Degeneration Association

If you find any links that don’t work, please let me know in a comment or an email to me at http://light2sight5153@gmail.com

 

Every once in awhile we get emails from people with stories to tell.  Recently, it was someone who believed he had positive results reversing some of the effects of AMD using only supplements with lutein and zeaxanthin in them.  Sue writes about some of the research about these carotenoids.  It seems that they can…

Plump Up That Pigment

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

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’s Best Pages: Part 1

For many of us,  high school and college are long ago and far away.  Do you get nostalgic?  Is that a good thing to do or not?  Read why Sue says that remembering good things will help us to be able to say…

I Got This

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

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!

In a page that includes the puppygirls, thanks to ‘her people’, online magazines, immunosuppressants, and retinitis pigmentosa, Sue concludes that it is getting…

Brighter Every Day

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

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!

As Sue comes closer to the date of retirement from her job at the school, she’s surprised to hear some of what her co-workers are saying about it.   It seems that they are thinking of the expectations for THEIR retirement and they are projecting their hopes onto her.    That got her to thinking about…

The Power of Expectations

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

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’s Best Pages: Part 1

We think you have seen the picture of 2 little boys each holding a ball that is shown without any modification and then shown with a greyish ‘blob’ obstructing their faces with the rest of the picture blurry.  It was published by the NIH and is used to show what can happen in AMD.   No one questioned this representation until The Macular Partnership recently created 6 new variations & showed it to 6 people…and got 6 different answers!  We’d like YOU to look at these pictures to help us in…

Picturing AMD

I have drusen, does that mean I have macular degeneration?

Answers

From http://www.eyephysiciansoflongbeach.com/los-angeles/retina-center/macular-degeneration.htm
“No, not necessarily. About 50% of the population will show hard drusen and almost 100% the population above 50 will have at least one druse, but many will not develop macular degeneration. An examination by your doctor will help you better understand your risk and what to do about treatment.”

From http://www.webrn-maculardegeneration.com/macular-drusen.html
“Not necessarily. Many individuals with some drusen do not go on to develop the visual symptoms of ARMD. From a clinical standpoint, drusen must attain a threshold in numbers, size, and shape for them to become a matter of concern to ophthalmologists.” This article goes on to talk about drusen at the various stages of AMD, the difference between hard and soft drusen and can you prevent, slow down or reverse AMD.

From https://www.enhancedvision.com/low-vision-info/eye-conditions/what-are-macular-drusen.html
Article answers: what are drusen, types of drusen and questions for your doctor.

 

First, there was the news from the UK’s Moorfields Hospital in London that stem cell-derived RPEs on a patch of material had improved the vision of 2 people with wet AMD.  Recently, similar news from the US that stem cell-derived RPEs on a patch of material had improved the vision of 2 people with geographic atrophy (advanced dry AMD).  What do they have in common?  If you live in California or Arizona, you might be able to get…

The Patch

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

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!

Stem cell research is very much in the news, not only in studies for macular degeneration but many other diseases as well.   Those working in this area have battled regulatory restraints for some time but it looks like much of that is over and stem cell research is moving on quickly.   In the area of AMD, several research projects are following…

Different Paths

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

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’s Best Pages: Part 1

Sue’s DBT webinar is one of the projects that has been keeping her busy.    She writes about some of the new skills she’s learning.  What do putting ice on your face or sucking on sour candy or naming the 50 states have in common?    Read and find those answers and also what it is that she says is…

All You Have to Lose

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

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!