Filling in the Gaps

Recently Lin steered me to a video by Sam of The Blind Life. Sam was explaining how he sees and taking exception to those representations of macular degeneration that have opaque, black blobs in the middle. Lin was interested in exactly what I see. Maybe we can expand this to what you all are seeing, too.

First of all, a little clarification. Sam has Stargardt’s Disease which is the “juvenile” form of age-related macular degeneration. He has been legally blind since probably his teens [Lin/Linda: actually, since he was 11.]. We are talking 30 plus years. Compared to Sam, I, with my paltry 4 years as a VIP, am very much the new kid on the block. My experience and knowledge cannot begin to match his.

For those who don’t yet know who Sue is, check the end of this page.

That said, it was a relief to discover that Sam with over 30 years of macular atrophy seems to see pretty much what I see. The reasons for the relief are two in number: 1) I am apparently doing this macular degeneration stuff “right” and 2) I am reasonably well assured I am not going to develop a big, honkin’ black hole in my visual field. Hallelujah!

What do I see? I have a fuzzy gray spot in my central vision. It is not opaque as sometimes it seems as if what is behind it is “bleeding through”. I often know there is something there but cannot see it clearly.

That is not 100%, of course. There have been times I have known something was there only because of sound or the perception of motion. If it is silent, stationary and/or not offering contrast to its background, I have been known to miss it entirely. Case in point, I somehow missed three jars of mayonnaise on the shelf. Three! I ordered another one from the grocery. My husband suggested I get a fifth one so I could have cinco de mayo. Cinco de Mayo; got it? [That’s a good one!] Oh, never mind. Anyway, the point is, things can disappear in the “haze” of my blind spot.

Another point Sam makes involves the concept of visual closure, although he does not label it as such. Visual closure is how your brain turns several segments of arc into a circle even though, in fact, the segments are not connected and not really a circle at all. Your brain closes up the gaps.

Sam was talking about how his brain fills in the gaps in pretty much the same way. Sam was talking about how he sees his blind spot as the same color as whatever is surrounding it. For example, the light switch might disappear and all he “sees” is beige wall.

I can get the same sort of thing going on if I look at the sky. The blue fills in and the bird I am watching disappears. If I am looking at a tree, my brain will fill in the sections of the branches that are in my blind spot. Sort of like connect the dots. That branch cannot end and miraculously reappear over there. Ergo, my mind closes the gap and I “see” the middle section of the branch. Brains are weird and amazing things.

And speaking of weird and amazing, we have had conversations with a woman whose brain filled in such a beautiful picture of an empty highway she had no idea she was about to be in an accident! Scared the bejesus out of her. If your brain is as good at filling in the blanks as hers, please be extra careful.

One more point that Sam made and then I will let you go. Although once again he did not refer to it by name, Sam is an expert at eccentric viewing. He has trained himself to use his peripheral retina very well.

I have been working on it for the past four years and it does get easier. I will use it when I need to see what is down the road that the dogs are getting so excited about. I might not be able to see details well enough to see exactly who is coming towards me, but I can see well enough to see a person and, let’s say, a large black blob that I assume is a dog. Time to move Maggie off the road. PsychDog returns!

Another time I use eccentric viewing is in typing my pages. If I put my macular focal point above what I am typing, I can pretty much read what is going on the page.

As Lin will tell you, I say pretty much because a lot of mistakes escape me. You know how they say the devil is in the details? My dears, the details are the devil when you are trying to use eccentric viewing. The peripheral retina was not designed for fine work.

So, that is pretty much how I see. Sam and I are in agreement. Great minds think alike and all that….But how about your great mind? Do you agree? How do you see? Start the conversation.

Written May 15th, 2020.

Who is Sue?

She’s my friend of 40+ years who became legally blind (20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other) from advanced dry AMD/geographic in 2016. 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 66 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels locally and abroad, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and adding new friends she’s been making along the way!

Next: Catching Up – December 2020

Come Ski With Me

Here I am again. Bored. Bored. Bored. My common sense is battling with my desires. I am still a snot bubble. Hacking, snotting, I am a beauty to behold. Anyone with common sense would have gone back to bed and pulled the covers over her head.

Wake me up when I am over whatever this nonsense is. Closed until further notice.

How well do you know me by now? I have no common sense! When I was small (and OK, when I was big too), my father would tell me that, for a smart girl, I was awfully dumb. My husband just suggested I not be a horse hiney. I had remarked that maybe, maybe I could use some of this beautiful new snow to go cross-country skiing this afternoon. Punctuated by hacking and coughing, of course.

Fortunately, there is one other person who has less common sense than I do. She is picking me up at 8 am tomorrow so we can get an hour of skiing in before we both have to go to work. I love irrational people!

I also love cross-country skiing. It is excellent, aerobic exercise. After you buy your equipment, it cost virtually nothing to ski. As long as you have snow, many people can just step out their back door and go.

Cheap, accessible and can be done by the visually impaired. Good combination.

Canada has a visually impaired, cross-country skier who has competed not only in the Paralympics but also in the plain, old Olympics. Brian McKeever was diagnosed with Stargardt’s Disease when he was 19. He lost up to 90% of his vision and, of course, what is left is peripheral.

McKeever skis. Oh, Lord, does he ski. Not only does he ski, he shoots. Aided by his brother as his sighted guide and some fancy technology, the man does OK. He has medaled numerous times in the Paralympics and won a spot on Canada’s able-bodied team. That was without the guide or the technology, by the way.

Simple fact of the matter is I have no more intention to compete than – what? Name something absurd – but if McKeever is doing what he does, why can’t I go out for a spin around the park? Other than the fact I have some disease right now? I think I can!

VisionAware has a list of tips for cross-country skiing with visual impairment. You need to choose an appropriate trail. If you are going cross-country when you cross-country, a GPS is a good idea. Managing glare is always a must and those of you with a significant vision loss need a guide who knows what he is doing and can give quick, informative instructions.

Except for the glare glasses, I really don’t need any of that stuff. I will be in the local park on flat terrain and we cannot really go far. I will do my hour’s loop and consider it time well spent. Good exercise, good environment. Good company. And it can all be had even with low vision. Sweet. Continue reading “Come Ski With Me”

News: July 15, 2016

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

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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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