Category: Sue’s New Page

It’s Sue’s last day of working at the school where she’s been for 40 years.  I’ve started a new job in a field I knew nothing about.   It’s not the first time we’ve “leaped” into something and then asked…

Now What?

We love when people share their stories with us.

Read the pages written by our Guest Authors and then write your own! It’s easy, just write your words and send them to me. I’ll edit them and format them into a page or pages.  Hearing the voices of others reminds us that we are not alone!

Send your story or advice to me at light2sight5153@gmail.com.

Research continues to look for ways to make the injections for wet AMD more effective and to last longer between them.   Sue reports on a study that uses x-rays/sealed radiation with anti-VEGF medications to produce…

Combination Therapies

Sue’s Musings

Too many pages to read? Here are some of Sue’s quotes with links to her pages.

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

Sue’s Musings: Then and Now – Part 2 – 1/20/2018

Sue’s Musings Then and Now – Part 3 – 1/24/2018

Sue’s Musings Then and Now – Part 4 – 1/25/2018

Over 2 years ago, Sue looked for promising AMD stem cell research and found Dr. Carl Regillo at Wills Eye Hospital in Philadelphia.  She’s seen him several times and just had an appointment with him. Unfortunately…

The Waiting Game Continues

If you missed it, here’s a post Highlight: Summary of Research and Development 2018.

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.