Category: Sue’s New Page

As you know, there are other eye diseases that cause similar vision loss to that of AMD. One of them is Leber Hereditary Optic Neuropathy (LHON) which is a hereditary disease that usually starts in a person’s teens or twenties.  Since Sue wrote about it in a past page,  she’s finding more articles about it.  She writes about one study in which they produced “mutant, transgender, blind mice (don’t ask me) to study the disorder…” We are…

Glad They’re On Our Side

From 7/8/2017

“It’s not fair.”  Have you said this or has someone said this to you about your AMD? Is this disease a punishment for something you did or didn’t do in your life?  Is good vision a reward for a virtuous life?  Is it productive to dwell on the fairness of this diagnosis?  Someone suggested that Sue just needs a …

Good Knock on the Head

 

As more people with AMD & other causes of vision impairment learn to use mobile devices to help them remain independent, more software developers release their apps.  Sue wrote about the Apple app Seeing AI in previous pages.  A new app for Android devices has been released by Google. It’s called…

Lookout

Blasts from the Past!

July 3rd, 2016

Dealing with vision loss is exhausting.  There is much more planning that needs to be done, for one thing.  Sue shares one example of this.

Cope Ahead

July 3rd, 2017

Sue gives another ‘helpful household hint’, this one related to appliances including how to possibly get help replacing them.   She also tells us what happens when our clothes dryer is…

Full of Lint

 

Sue writes about the research into how gut microbes might be involved with AMD.  After watching a Nova program “Wonders: What is Living in You” (there’s a link to it), she’s not exploring how researchers get new gut microbes into people. She considers it:

Pushing the Envelope

From 2017 on this date:

We love to hear from our readers.  We thank A.F. for her email about what others said to her when she told them about the AMD in one of her eyes (“At least you have one good eye!”).  Sue writes about why that is so stressful and also why we fear going blind.

One Good Eye

This week in the news there was a press release that said that the EU has granted the Lumithera LT-300 a “CE mark for treating dry AMD.” The question on our minds is: what is it, what does it do? Sue offers what she found about it.  We’ll keep you posted as we learn more.

Lights Please!

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

Are you using your vision impairment as an excuse not to do the active, fun things that you used to do? There’s lots of evidence that staying active is one way to have a happier and healthier life.  And if you are not doing anything active, it’s a good time to start. Our advice is to…

Go Out and Play!

I’m still taking a trip down memory lane. This is what we posted on 6/27/2017, words that are definitely still important to us:

Sue says it best: “If I had to define our ‘mission’ here, I would have to say part of it needs to be normalization of vision loss. Acceptance. Not complacency with avoidable blindness or an attitude of throwing up your hands in the face of unavoidable blindness. We cannot stop fighting vision loss and say it is inevitable. Instead, I would like to see us work towards a more generalized acceptance and understanding that there are millions of us and we can and should be part of the community. The more we get out there, the more we will be part of the social landscape. As we adjust to our vision loss within our society, society can adjust to us.”

Our Mission

As Sue is waiting for the arrival of her loaner CCTV, she wonders how much equipment is in the homes of people who are no longer with us.  On the latter subject, if you have wet AMD or advanced dry AMD, you are prone to health problems that might shorten your life.  That’s why we believe that…

Forewarned is Forearmed

It’s been over 2 years since Sue and I started this project.  I wondered what she was writing about 2 years ago.  Here is our post & her page from 6/25/2016.

There are some days when our minds are focused on the many concerns we have.  Sue’s advice is to find something positive to distract you.

Driven to Distraction

Everyone who has wet AMD (and those who fear they will develop it) hopes that there will be eye drops instead of injections. Sue reports on a recent article about the 1 / 2 clinical trial with PAN 90806 which is a once-a-day eye drop for wet AMD. The article talks about the drops reducing the “injection burden” which means that they hope eye drops will prevent people from stopping the treatment as many do with the anti-VEGF injections.  Sue asks…

Why Drop Out?

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

 

Sue and I believe that people generally mean well. Sometimes, though, you hear what is said to you or others with vision impairment, and you wonder where they learned what they said. For instance,  how many times have you been told…

You Don’t Look Blind

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

 

Some days are better than others. On this particular day, Sue found many things that weren’t going her way. She’s become dependent on her CCTV and it is broken so she’s on a quest to get a temporary replacement.  Some days we have…

Patience…or Not

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