I’m one of a group of people who worry about Sue (she sometimes calls it ‘nagging’ even though it is not, of course ::grin::). One of her friends told her to look into the research with statins. She did and she shares what she found. That brought her to the subject of fat as in bacon and butter, 2 things I doubt she’d ever give up! She’s concluded that everything she love is either…
Author: light2sight5153@gmail.com
Sue’s New Page 2/21/2017
How much did you know about AMD when you first got your diagnosis? How much have you learned since then? Guess what…the learning doesn’t end. There will be lots more of these…
Sue’s New Page 2/20/2017
One of Sue’s challenges is with the only transportation company available to her. Specifically, she’s never been a morning person but she’s had to try to change that to fit their schedule. Maybe someday she will look forward to the…
Sue’s New Page 2/19/2017
What IS a salmagundi? Merriam-Webster says it’s 1) a salad plate of chopped meats, anchovies, eggs, and vegetables arranged in rows for contrast and dressed with a salad dressing; 2) a heterogeneous mixture. Count on Sue to give us not only valuable information about AMD but vocabulary lessons! ::grin::
Sue’s New Page 2/18/2017
Sue packs a lot into each day, sometimes more than she should. When that happens, it’s like her body hits the…
Sue’s New Pages 2/17/2017
More about what goes into reading speed.
Reading Speed is NOT Speed Reading
Sue’s been waiting for over a year for notification that the stem cell trial she’s hoping to be part of is actually going to happen. Turns out it is delayed…again. But there is a second stem cell study and she’s hoping that it’s…
Sue’s New Pages 2/16/2017
In the year since we started the website, we have heard all kinds of inaccurate & misleading information that comes from a person’s eye doctor, especially from those who are not retina specialists.
Sue’s been reading about reading, specifically the factors that go into reading speed such as visual span (how far you ‘look’), eye movement and peripheral viewing.
Sue’s New Pages 2/13/2017
Thanks to questions from our followers & Facebook group members, Sue & I continue to learn about AMD. Thanks to a one of them, we found out about the variation in visual distortions and how they impact things like reading from the screen or printed text. Sue also shares that when her vision worsened about this time last year, she took time off from work to regroup.
We’ve talked about the results from the Vita Risk test. Now we review the additional information that most patients (those with early, intermediate or advanced AMD in only one eye) get when they have the Macula Risk test.
Sue’s New Pages 2/11/2017
Sue’s dad was an important part of her life. He was a GREAT man and gave her many positive traits and lessons. He did NOT give her AMD.
My turn, my genes!
Sue’s New Pages 2/8/2017
In yesterday’s page, Sue didn’t think she’d have a problem testifying in court. Today we find out what happened.
Sue continues trying to figure out what’s up with her genes.
Sue’s New Posts 2/6/2017
Sue talks more about her trip to Iceland. What will she remember about the trip?
The day that Sue got the results from her genetic test was NOT a good one, to say the very least.
Genetic Rant & Roll – The Miniseries: Part 2
Sue’s New Page 2/4/2017
Sue admits that she’s a ‘vision snob’. What does that mean? You’ll find out as she talks about how she decided that this was the year that she would SEE Iceland!
Sue’s New Page 2/3/2017
This page is from last September right before Sue & her husband took off for their vacation in Iceland. She’s done her homework about what anyone who is visually impaired will encounter in an airport.
What YOU Can Do for Low Vision/Macular Degeneration Month 2017
Sue & I thought we’d do something special for Low Vision/Macular Degeneration month so she’s written a letter that we are sending to our local print & online newspapers, bulletin boards, special interest publications. You are welcome to copy this letter and send it to YOUR local publications. If you do, let us know if you were published!
February is low vision awareness month. It is also Age-Related Macular Degeneration Month.
Age-Related Macular Degeneration, or AMD, is the leading cause of blindness in the developed world. It is found in ‘mature’ adults although there are similar degenerative, retinal disorders found in younger populations.
There are 2 million individuals in the United States who have AMD. This number can be expected to grow significantly as the population ages. The current estimate is 5 million AMD patients will be living in the United States by 2050. This is more than a two-fold increase in incidence. The need to care for these individuals can be expected to be a significant burden on families and community and government resources.
Wet AMD can be treated but there is no cure. Dry AMD, the more common form of the disorder, has no treatment and no cure. However, there are a number of encouraging clinical trials being undertaken around the world. A breakthrough is hoped for very soon.
In addition to the cutting-edge research being done in AMD, there are other reasons to be hopeful. Assistive technology has advanced greatly in recent years. There are many private and public agencies able to provide education, support, and, in some cases, materials to make the lives of the visually impaired much easier.
If you or someone you know has been diagnosed with a visual impairment, please contact your state or local visual services agency for help. You may also wish to contact a national organization such as the National Federation for the Blind.
Early detection is important. The National Eye Institute recommends that starting at age 60, everyone should have an eye exam through dilated eyes once a year. If you have symptoms of eye trouble, call your doctor right away.
There is help. There is hope.
Sue’s New Page 2/2/2017
What does it mean to be dependent on someone else? Is it always a bad thing? How do you deal with people who tell you what you ‘need’ to do? Sue answers these questions from her perspective.
Low Vision/Macular Degeneration Awareness Month February 2017
February is Low Vision and Macular Degeneration Awareness month. I’m asking members of our Facebook group – and now YOU – to write a short statement with advice as to how to deal with the diagnosis. I have these so far. I would LOVE to have our other countries represented. You can put your advice in a reply to this page or email it to me at light2sight5153@gmail.com.
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When I was diagnosed with dry AMD, my eye doctor had me look at an Amsler grid, and asked me if the lines looked wavy. They didn’t look wavy to me, but he proceeded to tell me I had early stage AMD in my right eye. He also said it was a slowly progression eye disease and maybe in 20 years there would be more treatments to help me. That was it. Nothing to tell me what to do, how to live with AMD or anything. I have since done a lot of research on my own which has helped me understand AMD better. LH Hot Springs, AR
If you are diagnosed with wet MD, don’t delay, start injections immediately, the slight discomfort and inconvenience are well worth saving your vision! If it’s dry MD, take the eye vitamins your dr. recommends, don’t forget! Do your research. PE Montgomery, Texas
Check your Amsler Grid regularly, it’s often your first indication that something is wrong. JR, Ontario, Canada
Don’t get depressed! Eight years after diagnosis, with the right lighting, I can still do almost everything, I did give up needlepoint, but it was boring. Life is good! JZ, North Carolina
Give yourself time to accept the diagnosis. A punch in the stomach takes your breath away but with time you will be able breathe again for throughout the world there is unbelievable research, support and hope. You are not alone. SH Chicago
Sue’s New Page 2/1/2017
This is Sue’s second page to reply to the comment on January 26th: “…And doesn’t the ADA require your employer to provide you with needed assistance and training (Braille classes)?”.
Highlight: Things You Didn’t Know About Your Peepers!
Thanks to Amy with Paul Gill Optician, Dublin, Ireland for this.
[Note: There’s a line in our disclaimer that says “The My Macular Degeneration Journal/ey website does not endorse any medical or professional service obtained through information provided on this site or any links to this site.”]
Age-Related Macular Degeneration (AMD or ARMD) has become a leading cause of sight loss in most countries including the US and the UK. This disease is a deterioration of the macula, a yellow-pigmented structure at the back of the eye, which enables us to see color and gives us our sharp vision. In this infographic from Paul Gill Optician, you see the UK statistics as well as “15 Eye-Opening Stats You Didn’t Know About Your Peepers”.
A 2010 survey reported that in the US, 2.07 millions were suffering from advanced Age-Related Macular Degeneration and it is expected to increase to 5.44 million in 2050 (statistics are from the National Eye Institute). Learning more facts about our eyes can help us to protect them better.
Sue’s New Page 1/31/2017
On January 26th, we had this comment on the website: “Hey, Sue: Why will there be a time you will have to leave your job? Could you do it if you knew braille, for instance? There must be more modifications and more technology that can come to your assistance to keep you employed. And doesn’t the ADA require your employer to provide you with needed assistance and training (braille classes)?” (Thanks for this Melinda)
Here’s the first of 2 pages with her response.
Highlight: Here’s a GREAT website especially for those with wet AMD
Lin/Linda here: Every once in a while I find a website and/or Facebook page that stands out. Here’s one of those.
The website and Facebook page are called The Science of AMD: Our vision is to save your vision. It is presented by the Amgiogenesis Foundation. Their headquarters are in Cambridge, Massachusetts.
Click here to go to the website. From there, you can connect to Facebook, Twitter or YouTube using icons in the upper right corner.
What is angiogenesis? From the website: “Angiogenesis is the process used by the body to grow blood vessels. In healthy adults, normal angiogenesis occurs in healing wounds and reproduction, but in all other situations, it is abnormal.”
It’s what causes wet AMD: “Wet AMD is caused by abnormal angiogenesis, when new vessels grow under the macula, disrupting the central region of the retina. These new blood vessels bleed and leak fluid, causing the macula to bulge or lift up from its normally flat position, impairing central vision. If left untreated, scar tissue can form, and central vision is irreversibly lost.”
What’s so special about the website?
- From a design standpoint, you can change the size of the font and the color of the font & background, you can choose a version of the site in any of 7 languages as depicted by flags, it’s easy to navigate.
- Format of content includes printed text, videos, audio, graphics, PDF files and more.
- This is not just for the US, there are resources available for other countries as well.
What information can I find there?
There’s a menu with Learn, Treat, Resources, Connect, About, Donate. I suggest you start at Learn! The emphasis is on how angiogenesis causes wet AMD and what can be done to treat it.
OK, now go and explore! Let me know what you think!
Guest Author 1/30/2017
Rick tells us how he is doing right after the macular pucker repair surgery.
Guest Author 1/29/2017
Sue’s friend Rick tells us what it was like to have a macular pucker repaired.
Linda’s New Page 1/28/2017
Sue’s New Page 1/27/2017
A year later, Sue talks about how her real life experience as a visually impaired person compares to what she thought as a fully sighted person and compares to what others may think, what YOU might think.
Sue’s New Page 1/26/2017
It’s hard to believe that one year ago about this time, Sue and I went from talking about ‘ordinary’ things, things that we’ve been talking about for 40 years, to trying to figure out what Sue needed to do to take care of herself with a whole lot less vision. We both share our thoughts about this year. Sue first.