My Macular Degeneration Journey/Journal
From Diagnosis to Decision – June 2023 Since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you'll get some pages 'not found' or 'private' until that decision has been made. The emphasis for several years has been on the Facebook group.
When Sue was at the Summer Academy, several people talked to her about a way to navigate that’s better than Google Maps. It’s called…
As we get older, some of our senses decline including that of taste. Sue has some hints to…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Lin/Linda here: I am having difficulties with the software I use to maintain the website. I will be sending a few posts from days past that I do not think went out. Sorry for filling up your inbox!
ATM stands for Automated Teller Machine. They’re not easy to use if you can’t read the small screen which is usually subject to glare. Luckily, many of the new ones have a jack for headphones so it’s almost like…
We know that what you want to hear about is what research is going to give you in your lifetime. But every once in a while something cool comes along like taking zebrafish genes and inserting them into mice for…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Lin/Linda here: I am having difficulties with the software I use to maintain the website. I will be sending a few posts from days past that I do not think went out. Sorry for filling up your inbox!
Sue continued her adventure by taking a bus back home after her participation in the Summer Academy at Penn State. Did she enjoy it? No, but she would do it again if she had to.
While at the Summer Academy, Sue talked to someone who gave her information about…
Centers for Independent Living
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Sue was invited to participate in The Summer Academy at Penn State University which was sponsored by the Pennsylvania Office of Vocational Rehabilitation. This was for visually impaired kids. This was her first ‘adventure’ away by herself to do her…
After the closing ceremony, Sue decided to set off by herself to explore.
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Sue shares some statistics such as “The World Health Organization (WHO) says there are 285 million visually impaired in the world” and adds that most of the vision problems of the world could be solved with glasses! The WHO & the Lions Club are working to solve this problem and are…
As Sue continues her journey, she’s been finding more and more evidence that a person’s genetics matters when it comes to the causes of & treatments for AMD. Turns out we all are made of…
Snips & Snails & Puppy Dog Tails
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Is it possible to overdo antioxidants? Maybe we really should follow the advice…
Once again, genetics plays a big part in an upcoming treatment for geographic atrophy: lampalizumab. Sue is…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Sue has always been an active reader & that has not changed even though her vision has. The difference is that she’s enjoying audiobooks now. There are lots of sources of them so we go…
Canada has many services for those with visual impairments. This is our salute to…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
There continues to be evidence that AMD is not one disease but a collection of them, some of which are based on genetics. A recent article says “APL-2, a complement C3 inhibitor, has met its primary endpoint in its phase 2 clinical trial, reducing the rate of geographic atrophy (GA) associated with age-related macular degeneration (AMD).” We have reason to hope for…
What’s the difference between ‘low vision’, ‘legally blind’, ‘visually impaired’? Sue helps you to…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
Lin/Linda here: I am having difficulties with the software I use to maintain the website. I will be sending a few posts from days past that I do not think went out. Sorry for filling up your inbox!
Sue has said this before “This really is the best time in history to be going blind.” In this page she adds “And we in the developed nations are geographically in the best places to be.”
The topic of this page is clean living. Sue says “Lifestyle changes are one way we can take some of our power back from this disease.” She knows she is a…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
Sue’s Android phone is new & she’s learning how to use the magnifier. She’s also learned more about how genetics can impact one’s treatment for wet AMD.
What is gene editing & why should we know about it? Sue says “How this relates to AMD is sort of basic. We know AMD is a genetically based condition. Change our genetics and we may eliminate the disease.”
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
A large study which started in 1987 showed some relationship between macular degeneration and sunburns in youth. Wear your sunglasses, put on sunscreen and…
Sue no longer drives but she decided that she should renew her driver’s license for several reasons. She says she spent the morning acting like…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
Sue is inquisitive, we know that. She’s been wondering if there is any information that we can get when we know the ending of a medication name, specifically the drugs ending in -ximab or -zumab. Turns out there is and you can…
There is so much information out there about AMD that it is hard to keep up! Read what she found in her…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
As you know, Sue has advanced dry AMD, specifically geographic atrophy. In the next several pages she writes about wet AMD. With the use of anti-VEGF injections, there’s been…
What was done for wet AMD before anti-VEGF injections? Here’s a…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
Sue says “I know I sound like a broken record, but there is much reason for hope. Together we WILL break the back of this thing.” She’s referring to some of the experimental technology in the works including contact lenses for AMD. She also discusses a study about lutein.
One of the most popular text-to-speech apps is NaturalReader which is available for Android and Apple devices as well as or Windows 10. Sue is impressed.
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
Sue was finally able to get to New York City. She used her monocular to view art at The Cloisters and animals at the Bronx Zoo. Read about her overall experience of visiting…
We both try to keep up with the current findings in the field of AMD. Sue talks about what she found by…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
One of things that the recent eclipse brought out in people is intellectual curiosity. How can we foster that curiosity despite visual impairment?
Sue says “We are very often good pickins for the quacks and scam artists of the world.” There have been stories of Medicare fraud related to eye care and experimental treatments costing thousands of dollars. Sue urges…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
Sue says “Remember the more fit you are, the healthier you will be. The healthier you are, the longer you keep your independence. Water exercise can help you to achieve these goals.” So…
Continuing with the theme of becoming and staying healthy through exercise, Sue says…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
I’m just going to let you read the page to figure out where Sue got THIS idea! Is it time to take away her Internet access? ::smile::
We’ve talked about audio description for TV and movies. There is also audio description available for some live performances.
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you click here to read In the Beginning.
Sue’s frustrated. She says “I miss my freedom and flexibility of movement. I want to be able to go where I want to go and do what I want to do when I want to do it. And I don’t want everything I do to be such a damn project!” Then she feels guilty because she has so many great & helpful people in her life. There’s DBT advice for this but she admits she has…
Visual impairment can change the concept of livability in terms of what resources are available such as access to transportation and accessible features such as audible traffic signals. Sue found some cities that might be the…
Sue keeps busy outside her home. She says “I am cognizant the time is coming I will be home with…”
She’s talked about audio description for live and recorded entertainment. How do you set it up? Maybe put out an advertisement saying…
It was February 2016 when Sue’s vision declined such that she had to take a break from her ‘normal’ life to work with vocational rehabilitation staff who helped her get the devices & training that she needed for her ‘new normal’ life. More than a year later, some of the things she learned to do differently – such as shopping at Walmart – result in an…
There is power in numbers and the number of people with AMD grows as people are aging and living longer. We know we are the good guys who can encourage everyone, especially older folks, to have thorough eye exams. Together we are the…
Sue tells us about 2 women in the field of AMD. Both are involved with stem cell research.
Sisters Are Doin’ It For Themselves
Not everything you hear or read about AMD is accurate or up-to-date. We found one particular video clip where the information they shared was just wrong. And be aware that some of what is out there is…
One thing that is not always communicated to patients is that all AMD starts as dry. Wet AMD is one form of advanced AMD; geographic atrophy is the advanced form of dry AMD. Why is it that so many people’s first diagnosis is of wet? Can you have both forms at the same time? Read more about this as well as get an update on what’s going on with the clinical trial that Sue is waiting to be part of.
How much can using our other senses help when we have vision impairment? Sue offers some suggestions on using our sense of touch.
Competence is important to Sue, whether it is that of others or of herself. She says “Since I had my vision loss, I have an underlying uneasiness about becoming incompetent in my job. When will it happen? Will I recognize it when it happens? Will people cover up for me? And if they cover up for me will I leave my profession with a tarnished reputation? I never had these thoughts before but I have them now.” To her, competence is about…
Her shared ride transportation continues to be a problem. Also, she wonders why there isn’t a book “Miss Manners for the Proper Low Vision Sufferer”. On a more positive note, she has her first visually impaired client. It’s important to remember that little irritations are the stuff of low vision and…
Things have piled up for Sue. Her scotoma is getting denser, it’s been rainy and she’s sleepy, and her shared ride transportation continues to waste her time. It all adds up to…
Sue talks about 3 ways to magnify and move images to the healthy part of one’s retina, each with varying price tags. None of them halt the progression of the disease so…
