Domestic Goddess – Not!

OK.  I own it. Said it before. I have never and will never be a domestic goddess. I have never been a virtuoso in the kitchen. And you know what? I have no serious desire to do so.

I can do basic cooking. Both of my parents were able to make meals we did not mind eating and that kept us fed. My father was the world’s strongest proponent of meat, potatoes and a vegetable.

The first time my mother made spaghetti, we came home from an errand to find Daddy peeling potatoes! Did not matter the pasta was the starch; if you had dinner, you had potatoes!

So, I can boil potatoes. I can also bake them. I can make pot roast and soup and chili con carne and spaghetti with ‘doctored’ meat sauce, but I don’t cook often. Anything you can do in a microwave often becomes dinner.

As I was just microwaving my lunch, I started to think about nutrition. I get school lunches three times a week. Other times, if my body is telling me I need to eat something that will actually NOURISH it, I cook. (Big believer in listening to your body here.) But what about people who cannot do that? What if your vision or another infirmity makes it so you are required to depend on ‘quick and dirty’ for your meals?

First of all, school lunches. I cannot find it, but I could swear that under the government program that distributes ‘extra’ food to schools, there is a stipulation that says the elderly can eat in school cafeterias. Full of canal water? Possibly. If anyone actually knows, let me know. That one is a maybe. [Lin/Linda: I couldn’t find anything like that, sorry.  It’s a good idea!]

Meals on Wheels is an option in most areas. Daddy was not always crazy about the selections they had and the delivery schedule left something to be desired, but the meals were guaranteed balanced and nutritious.

Canada runs their own Meals on Wheels program. The U.K. appears to have something similar in the Meals at Home/Meals on Wheels program.

Then there is the whole slew of microwaveable dinners available at the grocery store. There seems to be a wide range of them with wildly varying food values.

Eat This, Not That! either has stock in Amy’s and Kashi’s or those companies make very good products! Those companies come up a number of times in The 46 Best Frozen Foods in America. Check out the link for the rest of the manufacturers.

In their article 10 Frozen Dinners That Pass the Nutrition Test, NOLA (New Orleans newspaper website) also recommends foods by Kashi, Amy’s Kitchen, and Tandoor Chef. Other companies are Evol, Artisan Bistro, and – names I actually know – Healthy Choices, Lean Cuisine and Weight Watchers.

Most of what was recommended is decidedly not meat, potatoes and a vegetable. Daddy would look askance at more than several of the choices suggested. However, if your tastes are different from what my father’s were I would suspect you can find two or three that you can eat.

Decent nutrition even a few times a week is better than none at all.

P.S. If you are looking for breakfast cereal, Cheerios and Total come in 9 and 10 in a listing by Greatist!.  Of the 20 Cereals That Are Actually Healthy, the top three were made by Barbara’s. This may a Canadian company although there are distribution centers in California and Kentucky. All I know about them is what I have read online. Continue reading “Domestic Goddess – Not!”

Electron Rustlers

Let me preface this page by explaining how I passed chemistry: I did not understand a word the teacher said. He was so far out in left field I was never going to find him. I say it was bad teaching but maybe I was not being very bright.

Two of my friends sat behind me designing race cars. Never listened to a word of the lecture. After being confused for 45 minutes, I would turn around to the guys and they would clear everything up in 45 seconds.

I was terrified to try physics. That was the end of me and the hard sciences.

Moral of the story? You probably should not listen to me try to explain oxidative stress.  You have been warned so I am forging ahead.

I keep running into titles like The Role of Oxidative Stress in AMD. Great. It is important. What the hey is it?

Revisiting my horrible experience in chemistry my junior year, I vaguely remember learning atoms have electrons that spin around the nucleus in shells. Shells are orbits and for simplicity sake we will say they go out from the nucleus in concentric circles. (They really don’t but cut me a break. Two kids drawing race cars saved my chem grade.)

Each of the shells has an ideal number of electrons that orbit there. Although a shell is generally OK without the ideal number, it still tries to have that number. Sometimes it loses some electrons. Sometimes it steals some electrons and sometimes it shares some electrons with another atom that is also longing for its ideal number.

This desire to be ‘whole’ and to fill its outer shell with the ideal number of electrons is what is called being reactive. Often being reactive is a great thing for an atom. It gets to hook up with other atoms and make all sorts of crazy new molecules.

However there are times reactivity is not a good thing. Sometimes an atom may do some ‘electron rustling’ and steal from a neighbor. That atom is now out of kilter and it does some electron rustling of its own. Before you know it, there is a full-blown range war going on in your atoms. There is no peace in the valley!  This is oxidative stress.

Oxidative stress, just like a range war, can leave a lot of destruction in its wake. With all that electron rustling happening, things get damaged and broken. This is some of what is happening in our eyes.

You cannot totally eliminate oxidative stress but there are ways to restore the peace. Enter antioxidants.

Antioxidants have electrons to give to that first electron rustler. They allow that atom to be ‘complete’ by donating some electrons to fill its outer shell. If that atom has its needs satisfied early, it won’t feel the need to go rustle. Range war – errrrrrr, oxidative stress – averted.

Vitamins C and E are antioxidants. Also vitamin A. [Lin/Linda here: if you have Stargardt’s Disease, you do NOT want any extra vitamin A. Click here to read more about why that is.] Eating red, orange and yellow fruits and veggies can be very good for you. You can also get antioxidants in supplements. However, like all good things, they should be indulged in with moderation.

So that is my take on oxidative stress. I hope the guys would be proud of me.

Click here for another explanation of oxidative stress by Dr. Andrew Weil.

Continue reading “Electron Rustlers”

I Am Not a Doctor

Commentary: Lin just sent me a post from someone in the Facebook group. She asked for my reactions. The person is claiming he completely reversed neovascular (wet) AMD with nutritional treatments. Here goes.

First the disclaimer. I am not a doctor. I am not a nutritionist. I am a woman with dry AMD who has tried to educate herself about her disorder. Therefore I do not, by any stretch of the imagination, have all of the answers. End of disclaimer.

That said, let me congratulate him on his greatly improved vision! I am glad he are doing well.

I know some of what he says is true. In general the diets of those in the developed world are atrocious. We should be eating many more fruits and vegetables, especially our leafy greens, than we do. The reason taking the AREDS/AREDS2 supplement works to slow the progression of the disease is probably our poor diets. If we ate well, the supplements would not be so needed. [Lin/Linda: I have to mention that there is some risk taking the AREDS or AREDS2 with 80mg zinc.  It can cause problems in the genitourinary tract but there is evidence that for people with certain genes, that high dose of zinc can cause their AMD to progress faster. Since not everyone has easy access to the genetic tests, there are supplements with no zinc or less zinc.  Check out this post for more information.]

Angiogenesis is the growth of new blood vessels. This is a hallmark of wet AMD. There is some evidence angiogenesis is part of the healing process and may be triggered by inflammation (Reiner O. Schlingemann in Role of Growth Factors and the Wound Healing Response in Age-Related Macular Degeneration). There is also evidence that retinal hypoxia (in English? Your retina is gasping for oxygen) is a trigger for angiogenesis and neovascular (wet) AMD. (Citation same guy. It is so nice not to have to follow APA format? [Lin/Linda: APA is the American Psychological Association and when you write something for them, you need to follow a very strict format for references to articles.]

That said, theoretically it is possible he hit upon a combination of nutrients that would reduce inflammation and increase oxygenation to his retina, thus somehow stopping the angiogenesis. Did this happen? No clue. I am just sort of a slightly-too-smart-for-my-own-good, visually impaired lady. (Gets me in a lot of trouble.) Is it possible? Sure. “There are more things in heaven and earth, Horatio, than are dreamt of in your philosophies.” (That is the bard, of course).

Now, it would be my supposition – again totally unfounded – he was not in advanced AMD and had not experienced much if any photoreceptor death i.e. geographic atrophy. Unfortunately from what I have been told dead is dead with those. They would not have come back.

That is pretty much my take on it. Again when it comes down to it, I know nothing but I have a helluva lot of opinions. Don’t believe me. Offer your opinions. What do you folks think? Continue reading “I Am Not a Doctor”

Taking Care of You

Morning. I have nothing until noon and I just slept until 8:30. Whoa. Must have needed it.

Which brings me to the topic for this page: a quick review on self-care. I forget and I even teach the stuff! I suspect you forget, too.

We were gone for nearly two weeks. Iceland meant new climate, new food, new routine, new time zone. These are all stressors. The human body was meant to cover the distance between here and there in five months, not five hours. Then I came home and was not at the top of my game for something important. More stress.

I am sure you know about you. Me, I show stress by not sleeping and sometimes I get a migraine. I had two last week. While migraines are not fun, they tell me something. I need to stop the nonsense and take care of myself! That means a big dose of PLEASE.

Off schedule, my husband and I both missed our meds a couple of times. I needed to take care of my physical illnesses by getting back on my meds on a regular basis. That meant being sure I took my meds right after brushing my teeth like always. Routine.

Eating properly had to happen which meant I had to – gasp! – cook. My big deficit is vegetables. For me, carbs and salt are basic food groups. I had to avoid that and provide myself with meat, potatoes and a vegetable or two or three.

Balanced nutrition was a must. We are what we eat….in that case, I’m popcorn!

Avoiding intoxicants has never been a problem for me but if you are the type to have a couple of beers or a few puffs to destress on a regular basis, you should stop. Not good for you.

I say that and then I turn around and say I took an OTC nighttime pain reliever to sleep. This is not an every night thing, however. I also used aromatherapy with a little Vicks Vaporub and did my square breathing.

Remember to sleep in a cool, dark room. Limit your screen time before bed. That is what the experts say.

Exercise has been royally screwed up this week because two of my rides had other obligations. Back into the groove tomorrow. In the meantime I had my husband take the Beastie Baby and me to the beach for our walk.

A good dose of nature is good for what ails you. Gently running water is great for providing a little dose of tranquility.

I admit, attention hog that my husband says I am (and I am. I love positive regard), I did have a few other mood boosters. My third job boss is coming half way to pick me up and take me up there. They have work for me. I may be pitiful but knowing I am wanted means a lot.

Then it turns out I did not do as abysmally in the photo contest as I thought I had. Out of three entries I had a second and an honorable mention! Yippee!!!!

To make matters better, my life-long friend the artist had three paintings in the associated art contest. She earned two firsts and a second! Taking photos of her paintings with their ribbons and hearing her reaction was the most fun of all! I “made (her) day!” , which was awesome.

Doing for others really does help you get over yourself.

Time to get ready for work. I will get to reading that article about increasing visual span this evening. Who knows? Might help. Continue reading “Taking Care of You”

I Have Macular Degeneration…Now What?

June 2023 There’s an announcement that 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.

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers:

Click here to go to Guide Me.

Click here to watch a 4-minute video that explains what AMD is, what causes it, and what can be done about it.

Click here for a good list of Frequently Asked Questions.

Click here to go to a great site maculardegeneration.net where you will find articles written by people with macular degeneration and caregivers. They also have a Facebook page.

What other websites are helpful?

Here are some of our favorites:

Click here to find out should I take the AREDS or AREDS2 supplements?

Click here for a video that covers important information about AMD

Click here for a description of dry vs. wet AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here for an explanation of the stages of AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to read about what happens if you have AMD in only one eye

Click here for some answers to common questions about depression after diagnosis

Click here for an article about how vision rehabilitation helps prevent long-term depression

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

Click here to find a support group (I’ve been told that this site may not be up-to-date. Ask your eye specialist for a referral.)

Click here for eye-healthy foods including a Healthy Vision Grocery List (2/14/2022 site wasn’t formatting properly.) Click here to read the answer to the question ‘What should I be eating or not eating to hopefully slow the progression of my AMD?’

Click here to find out what vision changes/symptoms to look for (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)

Click here for tips on how to make the most of the vision you have (section toward the bottom of the page; lots of other good information on the whole page)

Click here for a FAQ (Frequently Asked Questions) from the Macular Disease Foundation Australia.

Click here for a FAQ (Frequently Asked Questions) from our Facebook group.

Where can I do more research?

You can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

Click here to go to How to Navigate and Search Our Website.

Join our very active Facebook group Our Macular Degeneration Journey. There’s lots more information there as well as support whenever you need it.

How do I move around on the website?

Click here to go to How to Navigate and Search Our Website.

To find about more about me, about Sue, about our project, go to the menu at the top of the page.

Reviewed 02/14/2022

 

 

 

 

Welcome!

June 2023 There’s an announcement that 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.

You are here to follow the journey & misadventures of a woman named Sue who became visually impaired with Age-Related Macular Degeneration (AMD or ARMD) seemingly overnight.   Join in the tears and laughter. Join in the discussion. Learn more about Age-Related Macular Degeneration. Find resources for your own journey or that of someone you know.

We’re going on a bear hunt….can’t go over it, can’t go under it, got to go through it.

Sue is a psychologist trained in Dialectic Behavior Therapy (DBT) and is using it to help her cope with this vision loss. Her trusted and invaluable friends bring computer, research and occupational therapy skills to this endeavor. Yeah team! We hope you benefit from the fruits of our labors.

We are not offering free psychological therapy.  We are not medical people.   Please read the disclaimer.

This website is divided into 4 parts:

  1. If you have just been diagnosed or if you are beginning your research, here’s a place to start in I Have Macular Degeneration…Now What?
  2. Sue’s journal pages which are like chapters in a book
  3. Highlights & News which are basically blog posts
  4. Links to helpful resources (still under construction)

For those of you who aren’t familiar with websites or blogs like this, to ensure that you will be notified when information is added to the website, you must subscribe by email.  On a laptop & most tablets, you’ll find the place where you can do this in the right-hand column.  On a smart phone, you will find it below the content for the page that you are looking at.

We are still learning, we don’t know everything about this challenging disease.

Courses Coming Soon!

Thanks!

Thanks to Lesley B., Sally R., Dave M. and Gerry M. for going through the website looking for links that didn’t work, things that didn’t read well and typos.  We couldn’t have done it without you.

 

Resources

June 2023 There’s an announcement that 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.

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated.  I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey.  Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.


AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.


Navigating

There are a lot of links here.  I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.


Topics-click below to move to a topic

Links We Like

  • Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
  • Click here for a great glossary
  • Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
  • Videos
    • Click here for several videos
    • Click here for the UK Macular Society’s Say Hello to Mac
    • Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
  • Click here for a short introduction to stems cells, what they are and how they can be used.

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.


Glossary

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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Support

I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one  you’d like to add.

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

  • Association for Macular Diseases
    210 E. 64th Street
    New York, NY 10021
    (212) 605-3719
    – Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
  • Macular Degeneration International
    is now a part of Foundation Fighting Blindness
    Toll Free Helpline 1-800-683-5555
    EMail: MDInfo@blindness.org
    – Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
  • Vision Support Group-download video presentations  This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases.  You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport

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Where to find services

  • In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
  • In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
  • In the US: click here to search for a wide variety of services (more than the link above)
  • In Australia: click here to find an ophthalmologist and optometrist
  • Worldwide: click here for resources worldwide

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

Formats: Braille, large print, e-book and audiobooks

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Videos

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Personal stories of living with AMD

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Online newsletters

Go to the Top


What is AMD?

Wet Form
Dry Form
How fast does AMD progress?
  • A good article about how difficult this is to answer
  • Great video that explains why early detection is important especially when detecting the change from dry AMD to wet

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What is Stargardt’s Disease?

Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

  • problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
  • eye problems that have similar symptoms as AMD:

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Risk factors

Age

  • Age is a large factor but can start earlier
  • Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others.  See Stargard’s Disease section above.

Diet/nutrition (working on this section)

  • diet low in various nutrients & high in others have been linked to AMD.
  • See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.

Race

Gender

  • AMD more common in women perhaps because women live longer than men

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

  • Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.

Connection between AMD and Alzheimer’s Disease

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Treatments

  • FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)

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Research/Clinical trials

 

How can I become a part of a clinical trial?

  • A list of sources of information about clinical trials and how to find out for you to participate in.
  • You can search for clinical trials from the links above
  • There are registries where you sign up and enter information about the status of your eyes.  Researchers will use this information to find people that match their research and contact you.  Click here for more information about these registries in the US and elsewhere

Gene Therapy

Bionic Eye/Retinal Implants

  • What is a bionic eye?  It’s also called retinal implant or retinal prosthesis.   Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
  • Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
  • March 21, 2016 UK Bionic eye being tested
  • Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

  • A website for the US where you enter your zip code and transportation options for your area will be shown.

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 


More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 


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Home

Sue’s Journal Pages

June 2023 There’s an announcement that 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.

Update 2024 She HAS been writing about her experience with the APL-2/pegcetacoplan/Syfovre Phase 3 clinical trial, GALE follow-up study, and GARLAND Phase 4 clinical trial.

 


2024 Most Recent Pages

Sue’s Series on Being a Participant in the APL-2/pegcetacoplan/Syfovre Phase 3 Clinical Trial, GALE Follow-up Study, and GARLAND Phase 4 Clinical Trial

2016

Sue’s first aspiration to be a ‘super lab rat’ was not long after she considers the start of her status as legally blind. You can read about that here: In the Beginning.

2019

It was June 2019 she was accepted into the Phase 3 clinical trial for what was first called APL-2, then pegcetacoplan (Syfovre when it was approved by the FDA in 2023).  Finally a Lab Rat. In July of that year, she wrote about her first injection: The Beginning of My Clinical Trial.

2022

In August 2022, before the FDA approved Syfovre (February 2023) and after that she was accepted into the long-term follow-up study, she wrote about her ‘Diabolical Plan’ to be accepted into a stem cell clinical trial while she’s still alive: My Diabolical Plan: Stem Cell Transplant for Dry AMD.

2023

She also wrote about the discussions of the studies: Pegcetacoplan Study Cliffhanger and Pegcatacoplan Side Effect Hunting.

After the drug was approved in February 2023, she revised her article from her perspective of being halfway through the 3-year follow-up study: My Diabolical Plan Revisited March 2023. In this article, you can read about her trip to Wills Eye Hospital in Philadelphia to participate in an interview for a CBS affiliate which ended up being shared internationally about this experience. You can find the link to that broadcast here.

She also wrote What Does Syfovre Mean for You?

She also helped me with the page Questions and Answers – FDA Approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA.

First FDA-approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA: Perspective from Sue.

2024

 

 

 

You can choose:

  1. To START AT THE BEGINNING and follow the pages from one to another like chapters in a book
  2. To get a list of ALL pages (some of the more recent ones may not be here yet)
  3. If you want to access pages by a particular CATEGORY, look to the right of this page or at the bottom and choose a category (for example, Cognitive Therapy, Research, etc)

 

 

Sue’s Toolkit – 2 Years Later – Part 1

Sue’s Toolkit – 2 Years Later – Part 2


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