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From Diagnosis to Decision – June 2023 Since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made.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.
Tomorrow we start our fourth year doing what we’re doing with 177 website followers and almost 2,200 Facebook group members. As we have done in 2017 and 2018, we both wish you a Happy 2019! Sue writes about why she is optimistic about 2019:
Read Sue’s past page about…
A few days ago, I shared with you 2 pages that Sue wrote about research into mitochondria and how it may be connected to AMD. We BOTH missed that the Stealth research was moving in Phase 2b in the coming year. Sue’s written a page to clarify what we missed.
Sue on Assignment: Mitochondria – Part 3
If you haven’t read her first 2 pages, here they are (there’s a link to page 2 at the bottom of page 1):
Sue on Assignment: Mitochondria – Part 1
One of our Facebook group members mentioned that her Retinal Specialist said that there was promising research about AMD and mitochondria. Sue took on the assignment to see what she could find. Here are 2 pages:
Sue on Assignment: Mitochondria – Part 1
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 and pages. Hearing the voices of others reminds us that we are not alone!
If you don’t want to write something long, how about sharing a short statement of advice for those who are new to the diagnosis. I’ll make a webpage of them.
Send your story or advice to me at light2sight5153@gmail.com.
Have you had one of those days when something unexpected happens and it throws you into a tizzy? It happened to Sue on Sunday when one of her “puppygirls” got ahold of her eyeglasses and scratched the center of one of the lenses! Sue’s a psychologist who uses and teachers a type of therapy in her professional life. She also uses it for herself and shares it with you. She writes how she handled this unexpected stress by turning…
After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.
Sue is a professional therapist who uses a type of therapy with her clients called DBT which is a cognitive behavioral treatment. She has also used this therapy in her personal journal with AMD. In the first page of this new series, Sue writes, “In my job as a DBT therapist, I am a huge proponent of tolerating and coping. Accept that which you cannot change. Acceptance and tolerance of that which we cannot change reduce suffering. ”
Sue on Assignment: Coping Fatigue? (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)
Sue has written about a variety of topics: several supplements (bilberry, resvertrol, astaxanthin, CBD Oil), independence (what it means to Sue, how to get food to come to you), AREDS2 & geography atrophy, how to conduct an experiment on yourself, non-genetic causes of MD, research on calcified eye spots, money for assistive technology, eccentric viewing, high altitudes & the eye. You can choose the topics from this menu page:
Sue on Assignment: Special Topics
After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.
I asked Sue to test the smartphone and tablet app Be My Eyes. This free service allows someone with a visual impairment to be connected to a sighted volunteer who can see what the caller’s video camera is showing.
Here’s a page I wrote about this app with more details, how it can be used, and videos demonstrating its use.
The holiday season is often a time of more stress than at other times of the year. It can be especially difficult if you have recently been diagnosed with AMD or your AMD has progressed causing vision impairments. Sue has written about ways to help deal with this stress.
Part 2 Dealing with the Emotional Reaction to Vision Loss
Here are some ideas to reduce the stress of buying for those with low vision including for YOU!
Do you have ideas for gifts for those with low vision? Share them in the ‘reply to’ box on this page or send them to me at light2sight5153@gmail.com.
At Sue’s recent appointment with her new retinologist, she says she was told, “I have…
Are you a caregiver for someone with a visual impairment? Do you have a visual impairment and want to remain independent? Do you have a diagnosis of macular degeneration and want to plan to remain independent if you become visually impaired? Here are some tips that I shared in the Facebook group from a very helpful article.
Help Yourself and Others Remain Independent Part 1 (2 pages)
By now you should know that Sue does everything that she did before her vision declined. A big part of her life is exercise especially if it involves dancing. How does she “follow the leader”? Read and find out…
Sue on Assignment: How She Sees What She Sees
In a few days, it will be Thanksgiving in the US and the beginning of the holiday season around the world. This can be a difficult time if you have low vision or are helping someone with it. Here are some tips that I hope will help.
Sue had a request for a page about whether altitude affects AMD. This is the first of 2 pages on the subject:
Altitude and AMD: Part 1 – there’s a link to page 2 at the bottom.
Sue has written pages on 13 topics so far including research on several supplements (bilberry, resvertrol, astaxanthin, CBD Oil), independence (what it means to Sue, how to get food to come to you), AREDS2 & geography atrophy, how to conduct an experiment on yourself, non-genetic causes of MD, research on calcified eye spots, money for assistive technology. Check them out by going to…
Sue on Assignment: Special Topics
Do you have a topic you’d like Sue to research and write about? Let me know at light2sight5153@gmail.com.
Sorry it’s been so long since I posted. I have to admit that the Facebook group is keeping me busy!
Sue has written 11 pages on topics including research on several supplements (bilberry, resvertrol, astaxanthin, CBD Oil), independence (what it means to Sue, how to get food to come to you), AREDS2 & geography atrophy, how to conduct an experiment on yourself, non-genetic causes of MD, research on calcified eye spots, money for assistive technology. Check them out by going to…
Sue on Assignment: Special Topics
Do you have a topic you’d like Sue to research and write about? Let me know at light2sight5153@gmail.com.
One of the risk factors for developing AMD and having it progress is exposure to the harmful rays of the sun. Good sunglasses are a must! Years ago I found my first pair of Cocoon sunglasses which fit over my eyeglasses. It was love at first sight (I know, that is really corny! ::grin::). I have to admit, though, that I found their website to be a bit confusing, so I contacted the company and received a lot of help. After a few emails, I asked the great customer service person I’d been working with for something knowing that “Sorry, no” could have been the answer but the answer was “Sure!” There’s an early Christmas present for everyone who reads BOTH of these pages…
Me and My Cocoons – A Personal Story, Not a Sales Pitch Page 1
Did you find that early Christmas present? If not, email me at light2sight5153@gmail.com.
We’re continuing with the topic of independence. In our first post, Sue wrote about what independence looks like for her. In the Facebook group, we talked about one aspect: how it is possible to be independent without being able to drive by using the many sources of transportation that are out there that most people don’t know about. I recommend that those in the US check out the Ride in Sight website even if you don’t yet need it. You enter your zip code and get a list of transportation options in your area. I was personally surprised to find 25 options not just for rides to medical appointments but for other reasons as well.
In one of Sue’s 2016 pages, she wrote about what it was like to not be able to drive while her husband was in the hospital. One of the issues was how she was going to get groceries. You can read about that in Out of Milk and Eggs. I asked her to revisit that page and update us on the latest options for…
Sue on Assignment: Getting Food to Come to You
In the Facebook group, I listed several scenarios and asked this question: “This is what independence means to me now and what I agree would mean independence in the future with visual impairment.” Here are the top ones that were chosen:
Do YOU have a scenario to add to these?
If you are a member of the Facebook group, you know that on Sunday I asked the question, “What is your number one concern about your future related to your diagnosis?” By far the responses were about the fear of losing independence. One of the most independent people I know is Sue. Yes, Sue who has advanced dry AMD/geographic atrophy. Sue who quit driving over 2 years ago when she realized it was not safe anymore. Not being able to drive is – to many people – the end of independence. If that is the case, how has Sue continued to live as full a life at 65 as she did before her vision declined? I asked her…
Sue on Assignment: Independence
After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.
I am sorry it’s been so long since I’ve sent out an email. I’ve been a bit ‘under the weather’ (I’ll have to look up where that phrase came from). Sue’s been busy doing what Sue does which is just about everything! ::grin::
Disclaimer: Self-treating any eye condition and avoiding or delaying standard care may have serious consequences. Any of these recommendations are not intended to be a substitute for the medical advice given to you by your internist/general practitioner/primary care physician and your retinal specialist.
There’s always frustration when a patient with early AMD is told that they’re not candidates to take the AREDS/AREDS2 supplement. “What do I do?” I get the same question if someone doesn’t have AMD but has a strong family history. What about those who are aging and are concerned about their risk? Those are the same questions asked of eye specialists who have patients in these categories.
I found an article Beyond the tip of the iceberg – AMD and nutrition written by Dr. Rohit Narayan who is a therapeutic optometrist in England. His October 2018 article reviews some of the more recent studies about how nutrition affects the development and progression of AMD. The AREDS and AREDS2 studies provided the most significant evidence that a specific formulation of vitamins and minerals can reduce the risk of advancing to wet AMD for those who have intermediate AMD or wet AMD in one eye but not the other one. Dr. Narayan considers this group to be at the tip of the iceberg of those who are concerned. He writes, “So, what advice can the busy clinician give to a patient regarding diet and its effect on eye health?”
I’ve taken the illustration of 5 layers of his iceberg and summarized his recommendations for 4 of them. The 5th one (bottom layer) will be coming when he publishes his recommendations in a future article.
Start here: Article: Beyond the tip of the iceberg – AMD and nutrition – Part 1. At the bottom of each page, there’s a link to the next one.
I’m sorry that it’s been so long since I’ve posted. Life has a way of interfering with plans as you know too well.
Sue’s been accepting more “assignments” and has written about 2 supplements that are talked about in relation to AMD. As we both do when we are researching, we look for objective, scientific evidence of claims for AMD. We may find many claims made by testimonials and anecdotes, but we don’t consider that to be evidence. I’ve included a great video below to help explain anecdotes and why we don’t include them in our reporting to you.
We stress that you should always talk to your medical doctor before you take ANY supplement ESPECIALLY if you are taking medications including other supplements and if you have other health issues.
Astaxanthin: Has Potential But Not Backed by Scientific Evidence or AMD
Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD
A lot of people believe that personal experience with a health product or intervention is good evidence that it works. Here’s why anecdotes don’t make for reliable evidence, and why the plural of “anecdote” is not “data”.
27. Toy Story, Too March 26, 2016
Categories: Diagnosis: Newly Diagnosed, Eschenbach, Financial, Low Vision Aid, Technology: Phone/Tablet/Computer
Keywords: Financial, handheld magnifier, Low Vision Aid, Technology: Phone/Tablet/Computer
28. Taxman March 26, 2016
Categories: Diagnosis: Newly Diagnosed, Financial, Video
Keywords: deductions, disabled taxpayers, federal tax, free tax preparation, IRS, macular degeneration tax breaks, tax breaks for visually impaired
29. Yesterday March 27, 2016–>
Categories: Cognitive Therapy, Self-care, Sue’s Musings
Keywords: ACCEPTS, comparison, contributing, DBT, pity
30. Sue’s Terrible, Awful, No Good Day! March 27, 2016
Categories: Cognitive Therapy, Self-care, Sue’s Musings
Keywords: DBT, self-soothe
30. Sue’s Terrible, Awful, No Good Day! March 27, 2016
Categories: Cognitive Therapy, Self-care, Sue’s Musings
Keywords: DBT, self-soothe
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 600+ of them, here’s our suggestion of where to start.
We got a request from a Facebook group member for Sue to do research on this topic. Sue found some “interesting” and unexpected information.
Sue on Assignment: Non-genetic Causes of Macular Degeneration – Page 1 (2 pages)
Sue has offered to accept special assignments from us. If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!
It’s been 2-1/2 years since we started this project which includes the website and Facebook group. From the very beginning, Sue & I have stuck to our mission to educate & support members, but in the process to make sure the information shared is as accurate as possible and not misleading. Unfortunately, in the case of Facebook specifically, there’s lots of ‘bad’ information passed along quickly especially concerning products that offer ‘treatments.’ Not in our group, though. ::smile::
We know that we cannot stop people who want to try products that are not backed by scientific evidence to prove their SAFETY. If you are going to experiment on yourself, we want you to do it in a rational & time-honored way: by scientific experimentation. It’s really not that difficult!
Sue on Assignment: How to Conduct an Experiment for Yourself
We have a GREAT Facebook group (as I’m typing, there are 1,898 members, but that will change shortly since I add at least a few new members every day). They share information and ask me questions and also ask questions of other members. That’s one of the reasons that I started the group: to encourage discussion.
A recent discussion of what happens after anti-VEGF injections brought up the confusing use of the word “dry” when talking about wet AMD. Doctors will often tell patients, “Your eye is dry,” or, “Your AMD has dried up.” One of the members said that’s what she was told. Another member asked, “Can wet AMD turn to dry AMD?” Because of the confusing use of the word “dry”, other members said, “Yes!” It turns out that they were mostly referring to the correct use of the word, but I thought it a good time to clarify this.
In the diagram, going from left to right is the disease PROCESS from no AMD to dry then to wet AMD. Not everyone gets to the last & wet stage (10-15% of those who have AMD), but if they do, the disease process continues. If the injection was successful, the fluid that was leaking has “dried up.” Do NOT let down your guard thinking you have dry AMD and stop checking your vision or going to the eye specialist. Unfortunately, there is no way to reverse the disease process yet.
This diagram is from the most comprehensive page on wet AMD I have found. Some of it is highly technical, but it should give you a sense of what happens when the disease process of AMD progresses to wet. There are no arrows pointing up at the bottom of the diagram. The fluid from wet AMD can ‘dry up’ – that’s the objective – but the disease process does not go back to an earlier stage. Some people will say that if the macula is “dry”/”dried up”, the disease goes “dormant.” Regardless of the terminology, the disease process cannot be reversed yet. The injections treat the symptoms that affect visual acuity.
Another name for wet AMD is CNV which is Choroidal NeoVascularization (CNV is also used in other forms of macular degeneration). The choroid is where the blood vessels are below Bruch’s Membrane and the RPEs and photoreceptors (see the illustration at the top of the page). Neo means “new” and vascularization is abnormal or excessive formation of blood vessels.
Of course, we’d love if you’d join the Facebook group, but we know that some of you have chosen not to for various reasons – and that’s okay. If you have questions, please put them in the ‘leave a reply’ section, and I’ll answer them as soon as I can.
Here’s another topic that Sue researched and wrote about. There are quite a few really helpful assistive technology products out there – and more are coming out every day. They are SO expensive, how can ANYONE afford them? That’s the question I posed to Sue. She found ways to get help with funding for devices and apps for those with low vision.
Sue on Assignment: Money for Assistive Technology 2 pages
Sue has offered to accept special assignments from us. If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!
Sue has geographic atrophy (GA; advanced dry AMD) like some of you. I gave her a recent article that looked at the data from the AREDS2 study in terms of how those with GA did compare to those with wet AMD. Here are 2 pages from…
This is the first time since her vision declined that Sue has gone into Walmart alone. She shares techniques from DBT to help deal with: asking for favors, choosing which battles to fight and when to pass them by, and soothing yourself when you’re feeling stressed. She’s seen her general practitioner and her ophthalmologist, too. As usual, she’s been busy!
Sue sees Dr. Regillo for the second time. She shares why Scarlett O’Hara’s advice is a good one to follow at times. There’s a love letter to Amazon and advice for a vision simulation app to help explain vision changes to others. The BIG news from March 2016 is that Sue goes back to work with her cool “toys” and new ways of doing things.
This is the first time since her vision declined that Sue has gone into Walmart alone. She shares techniques from DBT to help deal with: asking for favors, choosing which battles to fight and when to pass them by, and soothing yourself when you’re feeling stressed. She’s seen her general practitioner and her ophthalmologist, too. As usual, she’s been busy!
Sue put on a tutu and a tiara and danced for an hour, an hour that gave her a reprieve from the anxiety. She met for the first time with her counselor from Pennsylvania’s Office of Vocational Rehabilitation (OVR) Bureau of Blind and Visual Services (BBVS) which looking back was a salvation!
If you’ve read these pages and just want Sue’s update on how Vision Rehabilitation helped her, click here.
Sue sees Dr. Regillo for the second time. She shares why Scarlett O’Hara’s advice is a good one to follow at times. There’s a love letter to Amazon and advice for a vision simulation app to help explain vision changes to others. The BIG news from March 2016 is that Sue goes back to work with her cool “toys” and new ways of doing things.
When Sue announced that she was going to take a break from writing journal pages, she asked if anyone had any topics that they’d like her to research. It didn’t take long for ME to find several projects for her. This is the first one. Sue has geographic atrophy (GA; advanced dry AMD) like some of you. I gave her a recent article that looked at the data from the AREDS2 study in terms of how those with GA did compared to those with wet AMD. Here are 2 pages from…
Sue on Assignment: AREDS2 Study & Geographic Atrophy
Sue has offered to accept special assignments from us. If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!
