Dual Diagnosis

I promised myself since I am only working part-time I would awaken my internal, sleeping Domestic Goddess. I would do great things! So far all She has done is roll over in her sleep.

Today I finished the cobweb seek and destroy mission. I took my fluffy thing on a stick – and please notice I use all of the professional terminologies! – and wiped down all of the walls and ceilings. The puppygirls followed closely along – sneezing.

I am working up – or in this case down – to shampooing the living room rug. That is going to take a lot of turning the mind and convincing myself to do it.

Well, stranger things HAVE happened; you know. ?

And while I think about shampooing the carpet, it is time for a page! Hopefully, there is something in the email to save me from myself.

Healio listed the five top articles about retinal disease in June. The first one was about intraocular lenses (IOLs) for those of us who have both AMD and cataracts. In Austria, they are implanting lenses that magnify in those who have had cataract surgery. The bottom of the lens sounds like it is more like a bifocal (my interpretation) while the top takes care of far vision for distance. The lenses provide 1.5 magnification at 25 to 30 centimeters ( read 10 to 12 inches) and 3x magnification at 12 cm to 15 cm. I assume that is 5 to 6 inches.

The researcher, Andreas Borkenstein, said that even though the scotomas (blind spots) are still there, the magnification makes it so they obscure less of the image.

They are finding great improvements in best-corrected distance acuity. People with acuity scores of 20/400 corrected to 20/63. Yippee!!!

Borkenstein stated he wants his colleagues to be able to give dual diagnosis patients (AMD and cataracts) hope. Just because a patient has advanced AMD doctors should not tell them cataract surgery is pointless and will do nothing! …Damn right! You tell them, Andreas! ?

In addition to the acuity improvements, contrast sensitivity and color perception also improved. Another yippee!

Now, having used MaxTV lenses, I can tell you, my depth perception can be way off when I use magnification. My low vision specialist warned me about moving and wearing them. Doesn’t work well. I tried to. (So maybe I am from Missouri?)

Anyway, my point is this: nothing was said about depth perception, driving, etc. in the article. I am thinking the neuroplasticity of the brain is such that it just eventually adapts, and you learn how to do all of those things normally. No going to put a cup on a table and missing the table by a foot! Or going to drop cans in a cart and have them rolling all over the floor like I did. Oops. Anyway, not sure if you can drive – or even walk fast – with these IOLs. Need to do more research on that. Also need to see if they have been approved in the USA, Canada, UK, etc.

But that will have to be another page. Bye!?

Written July 10th, 2018

Next: Orphan Drugs

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Vision 20/20

Good morning! This domestic goddess business has got to end. I have been cook and pool girl as well as laundress and puppy lifeguard not to mention dishwasher and sweeper person already this morning. Give me a simple day at the office!

First of all, Lin sent me the stats for the website. We owe all of you a HUGE debt of gratitude. Thank you! Our stats are wonderful and that is only because you are so fantastic. Thank you for your loyal support!

Honestly put, we are looking forward to the day you would never EVER want to read these pages. We are looking forward to the day we can close up shop and never write another page. The reason is this: that will be the day there is a CURE for AMD. Not here yet, but strides are being made.

Bringing me to a couple of related things I want to touch upon. Remember Vision 20/20: The Right To Sight? We are just about 18 months from their target date. Their goal is to eradicate preventable blindness in the world.

Back in 2004 JAMA Ophthalmology ran a lengthy article about the state of vision in the world. At the time there were 45 million blind in the world and 80% had been blinded by diseases or conditions that were either curable or preventable. Even worse, unless something was done and done quickly, they were projecting 76 million blind by 2020. Yikes!

Anything happening? Oh, yeah…according to Healio, the FDA has recently approved a treatment for river blindness. Although I don’t think I had ever heard of it before, I would suspect it strikes terror in the hearts of mothers in sub-Saharan Africa, Yemen, and South and Central America. Let your kids play in the river and they may come home with a parasite that will make them blind. The World Health Organization has identified river blindness as the second leading infectious cause of blindness in the world. Pretty good to finally have something that will treat that.

Then there are the cataract initiatives all over the world. Recently the director of Khmer Sight Foundation spoke on the strides they have made fighting cataracts in Cambodia. Good efforts there.

You want impressive? Try the Himalayan Cataract Project. A piece on CBS News last year sang their praises. Rightfully so. The Himalayan Cataract Project had at that time restored sight to more than four million people in 24 countries. That wasn’t just the work of founders Ruit and Tabin, of course. Together they had ‘only’ restored sight to 150,000. They trained a few folks along the line.

I will be anxious to see what the World Health Organization presents in 2020. I have a feeling it is going to be big.

Keep the faith. Progress is being made on all fronts. It is amazing. Want proof? Watch the 60 Minutes video when the Nepali woman sees for the first time in decades. Amazing.

Written June 17th, 2018

Next: Focus

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Cataracts and AMD

Hunting around for a good topic and AMD and cataracts popped up in the search. Daddy had both and I would suspect some of you have both, too. Is there a relationship between AMD and cataracts? If so, what is it?

Turns out those are excellent questions. The experts are falling on different sides of the fence as to whether or not there may be a relationship between them.

Back in the earlier years of this century (2002) the good folks in Wisconsin, the Beaver Dam Eye Study people, again looked at their subjects after ten years had passed. Statistically, there was an indication that cataracts alone are associated with early AMD. There was also a statistical correlation between cataract surgery and late AMD.

Once again, we are looking at correlation. Correlation does not assume causality. Want a giggle over crazy correlations? Go to the website Spurious Correlations for some fun graphs. You will quickly see how just because things correlate they may not cause one another.

Anyway, like I said, they are still casting around to try to get some definitive answers on this question. The Chesapeake Watermen Study found a correlation between having cataracts and AMD but the Framingham Eye Study and some early Blue Mountain work did not.

But what about a correlation between cataract surgery and late AMD? Beaver Dam found cataract surgery before baseline (initially study measures) was associated with increased risk of late AMD. In fact, eyes that had cataract surgery were four times as likely to develop geographic atrophy and three times as likely to develop wet AMD! Holy freakin’ moley! How do you like that for being between a rock and a hard place?

Of course, like, I said, there is no certainty in any of this yet. In AREDS Report 25, Chew et al reported no correlation between cataract surgery and ARM. Hard to know who to believe.

So, what to do? No one is saying to go blind with cataract now rather than wait and go blind with AMD later. Do what you have to do to see.

FYI Blue Mountain, fortunately or unfortunately, flipped over to the significant correlation camp in reviewing results of a 2006 study. While that may not be great news for those with cataracts, Blue Mountain also shared yet another point they agree on with Beaver Dam. They discovered nonphakic eyes had a three times greater risk of developing late stage AMD as opposed to phakic eyes.

I know. I know. Don’t get your panties in a bunch.  Here is the explanation: in phakic cataract surgery, there is a small incision made in the front of the eye and the artificial lens is implanted. The natural lens is not removed. In nonphakic cataract surgery, the lens is removed.

Talk to your doctor, but as it stands now, given the choice, the phakic procedure sounds like a better choice to me. Might decrease your chances of advanced AMD.

Written August 7th, 2017

Continue reading “Cataracts and AMD”

Updated: Is there a relationship between cataracts and macular degeneration?

Disclaimer: I’m NOT a medical person & this isn’t advice. I do research on topics & summarize what I find to try to make it more understandable. –Linda…

What is a cataract?

“A cataract is a cloudy or opaque area in the normally clear lens of the eye. Depending upon its size and location, it can interfere with normal vision. Most cataracts develop in people over age 55, but they occasionally occur in infants and young children. Usually cataracts develop in both eyes, but one may be worse than the other.” From Glossary of Eye and Vision Conditions

Here’s a good video from the National Eye Institute “Cataracts”

Here’s a very comprehensive website section with not only statistics from the UK but also sections on what they are, what medications are used with them, and where you can get more information.

Cataract removal in someone with AMD

Question is how much of one’s poor vision is from the cataract & how much from the AMD? Depends on the severity of the cataract & stage of the AMD.

Possible Benefits

From Cataracts & Age-Related Macular Degeneration

  • if it’s mild AMD, cataract removal may improve acuity even of central vision.
  • if more advanced AMD, removal may help with color discrimination, contrast, clarity or peripheral vision.
  • if it’s wet AMD which hasn’t been stabilized, see ‘Risks’ below.
  • if it’s a thick cataract that prevents the doctor from seeing the macula clearly especially if there’s a high risk for wet AMD, removal may aid the doctor in accurate diagnosis of condition of the macula.
Risks of cataract removal in someone with AMD

Basically the same as those without AMD except when the AMD is not stabilized – more below.  In general, it’s considered to be a low-risk procedure.

Considerations:
  • the natural lens (that’s what turns yellow and is called a cataract) filters blue light but you can get an IOL (Intraocular Lens) that will help to filter some of it out (no evidence this reduces vision).
  • risk of Posterior Vitreous Detachment (PVD) which can result in floaters or retinal holes or retinal detachments (holes or detachments can occur in the macula).
  • inflammation related to AMD. Solution: pre-op NSAIDS (anti-inflammatories).
    • From Cataract Surgery in the Patient with AMD
      “Additionally, growing evidence supports a pathogenic role for inflammation in AMD, and the normal inflammatory response that accompanies cataract surgery, even when uncomplicated, may be deleterious to at-risk eyes. However, epidemiologic studies to date have failed to prove definitively that cataract surgery is associated with AMD progression. “
    • From Cataract Surgery in the Patient with AMD “In summary, in the patient with a visually significant cataract, AMD should not be considered a contraindication to cataract surgery, and surgery need not be delayed for fear of causing advanced AMD. Factors such as IOL selection and peri-operative management may optimize visual outcome and reduce the risk of AMD progression.

Other references:

Cataracts and Macular Degeneration from WebRN-MacularDegeneration.com

The Impact of Cataract Surgery on Pre-existing Retinal Disease

updated 1/27/2017

News: August 25-26, 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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