This and That

Hey, guys! No idea what I am going to write about. I will just start and see what comes out. I have an hour to kill before going to teach class.

Told you I renewed my driver’s license yesterday. That was sort of stressful. I tried to do everything ‘right’ so I did not end up ‘outing’ myself. I would not want to try to pass as fully sighted everyday. I guess the truth really does set you free!

Remember: I don’t drive. My stubbornness and vanity are not worth someone’s life. I just needed to feel like a ‘big girl’.

After that I went and made a physical therapy appointment. I need to bring this shoulder back to health. Right now it is cramping my style worse than the eyes. The eyes don’t hurt! The shoulder does. I thought I was being good, but it still aches. Try trying to be active but not using one arm. Grrrrrrrrrr……

After kayaking on Sunday (yes, I know I have a bum shoulder. It reminds me hourly), I went to the phone store and got a new cell phone. Two and a half hours later and I was out of there. In that time I had to go potty at least once. If the process went on for another half an hour I was going to ask them to order take out!

Anyway, the point is this: phone store people are very helpful. They will spend the time with you. I still have a lot of stuff to do on the phone but Ron, the phone store guy, gave me his number and he promised to walk me through it all. As soon as I figure out some of what the hey I am doing on this phone, I want to load the augmented reality app and see how it works as a magnifier.

If your phone is slightly older, like mine was, it might behoove you to invest in a new one. On the new one, Ron turned the magnification up all the way. If I do the three taps thing after that, letters can be ¾ of an inch high. The easier to see, my dears.

Three taps thing? Yep. It is possible on Android phones to tap the screen three times in quick succession and everything magnifies. Three times again and it goes back down. No one may have showed you that little trick. The younger generation believe tech knowledge is innate, not learned. They think we should know.

And now news some of you can actually use, they are finding more evidence that we may be better off doing genetic testing before we start drug therapy. PubMed recently ran an article citing research that the risk allele of the Y402H polymorphism in the CFH gene is related to less favorable outcomes when using bevacizumab (Avastin) or ranibizumab (Lucentis). (Quiz: What does -zumab as a suffix tell us? Answer: humanized antibody. I learned something!) The ‘in English’ version of that is this: if you have a certain variation on the complement factor H gene, your response to those drugs will be less than you expected when it comes to wet AMD control. If you are not getting desired outcomes with either bevacizumab or ranibizumab, you might suggest your doctor try another drug instead. It appears that, in some cases, if one of those drugs doesn’t work well, the other one won’t work well either.

Well, I guess I should stop prattling here. Need to get ready to go again. Type at you later!

written July 12th, 2017

Continue reading “This and That”

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A Dozen Years of Progress

Here I am again, trying to offer a balanced look at AMD. Rumor has it the wet folks are wondering when they will get consistent coverage of their issues. Dunno.

When are we getting someone with wet AMD to write for us? You write. We publish. Until then, I can throw a few pages together, but my problem is dry. I cannot even begin to speak to the subject as well as someone with wet could. Consider it.

Found an article from BrightFocus Foundation. Title: How Effective are Age-Related Macular Degeneration Treatment? At the risk of sounding like a broken record, I like how the author points out there were very few treatments a scant 12 years ago. As the baby boomers we continue to drive many, many things in the world. Pig through the python; yes? We are now losing our vision and unless something is done, we are going to break the bank with our care needs. People respond to numbers, large numbers.

Which brings me to, did you know there are something like 200,000 new cases of CNV (wet AMD) every year in the United States alone? That is from CATT at 2 years: the facts.

I got to the CATT study because the BrightFocus article (above) referred to it. It is a 2010 study that seems to remain pertinent today. It was mentioned with ANCHOR, MARINA and HORIZON. These are all efficacy studies for your ‘shots’.

In the ANCHOR and MARINA studies Lucentis was proven to improve vision several lines on the chart. This was in the short term. The HORIZON and CATT studies were longer term and in these some gains were lost.

The VIEW trials suggested Eylea every eight weeks is superior to Lucentis every four weeks. However, more study is needed.

Avastin is a cancer drug. Injected into the body, it inhibits growth of new blood vessels in tumors. It tries to starve those, nasty things. Off-label use of Avastin for CNV has shown similar efficacy to Lucentis.

A big selling point for Avastin is cost. The article suggests it is $50 a shot. The others are thirty to forty times that much! Insurance problems? Talk to your retinologist about Avastin.

The BrightFocus article ends with good news. Did I mention I like this guy’s attitude? He reported a more recent CATT finding was 50% of patients retained 20/40 vision in the treated eye five years after the start of anti-VEGF treatments. Only 20% had 20/200 or worse! What do you think of those apples?

Again, these gains are in little more than a decade. How can you doubt more great things are coming and coming fast?

OK. How’d I do?

written July 1st, 2017

Continue reading “A Dozen Years of Progress”

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A Dozen Years of Progress
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Timeline Part 1: Advances in Treatment & Care for People with Macular Degeneration

It’s Lin/Linda.  I created this page to go with Sue’s page Not Your Parents’ AMD.  Like some of you, I had a loved one with AMD.  It was my father who was diagnosed with AMD in 2005 at the age of 82.  At the time, I was living 700 miles away and I did not know much about the disease or at what stage he was diagnosed.  He progressed to geographic atrophy (GA), that much I knew.  He was the sole caregiver for my mother who had Alzheimer’s Disease.  He continued to drive (not safely), take care of her and the house.  He was never referred to vision rehabilitation or offered any help other than being told to use handheld magnifiers.

I wondered how things have changed since then which led me to do this timeline review.  Not only have there been advances in the medical end of the field but also in the technology that is allowing people to remain independent for as long as possible.  That is if a person learns how to use the various devices and apps available.

I’ve based the categories of time on an article Age-Related Macular Degeneration
1969 –2004: A 35-Year Personal Perspective by Stuart L. Fine, MD published in 2005.  He says “In 1969, patients with AMD constituted a small part of a typical ophthalmic practice. From 1969 to 2004, the prevalence of AMD has increased, and the methods of evaluation and treatment have changed dramatically.”

I know I have missed many events that have been critical to the history of the treatment & care of AMD.  There is SO much information out there and I’ve tried to use the most significant dates I could find.  Have a suggestion of what to include? Did I get a date wrong? Let me know in a comment or send me an email at light2sight5153@gmail.com.

1st Era: 1969–1979
  • Emergence of fluorescein fundus photography: test used in diagnosis of retinal diseases
  • Development of ‘hot’ (high power) laser photocoagulation, first treatment for wet AMD
  • Relationship of drusen to age-related macular degeneration
  • Other developments:
    • 1976-1977 first personal computers affordable for home use
    • more low vision aids:
      • 1960s large print books became available
      • 1976 large print calculators became available
      • 1969-1970 CCTV (closed caption TV) for reading aid
2nd Era: 1980–1994
  • Clinical trials to evaluate new treatments, especially laser photocoagulation (1979-1994)
  • Development of risk factor data from large and small epidemiologic studies (epidemology is looking for patterns & causes)
  • mid-1980s term ‘senile macular degeneration’ becomes ‘age-related macular degeneration’
  • Other developments:
    • 1982 Vitreous Society was founded; 1983 first meeting attended by 44 retinal specialists
    • 1991 OCT (Optical Coherence Tomography) test used in diagnosis of retinal diseases
    • mid 1980s name changed from ‘senile macular degeneration’ to ‘age-related macular degeneration’
    • 1992 Americans with Disabilities Act (ADA)
    • 1983 first cell phones
    • 1991 World Wide Web for ‘surfing’ the Internet with easy-to-use browsers
    • low vision aids:
      • MaxiAids catalog of aids for orders from people with low vision & other impairments
    • technology/low vision aids:
      • 1982 DragonSystems founded Dragon NaturallySpeaking, speech to text
      • 1988 ZoomText was released which is software to magnify text on a computer screen
3rd Era: 1995–2003
  • Evaluation of radiation therapy for neovascular AMD, not proven to be effective
  • Assessment of pharmacologic interventions for neovascular AMD; Photodynamic Therapy (PDT) “cold” (low power laser) with Visudyne (first drug treatment;  2001)
  • Prevention trials: results AREDS released 2001
  • Other developments:
    • 1995 Amazon sells books online (1998 expands beyond just books; e-books 2000)
    • 1996 Google released
    • 1998 first e-book reader The Rocket
    • 2000 GPS available for civilians; 2001 personal navigation systems available like Garmin and TomTom
    • 2000 Microsoft & Amazon sell e-books
4th Era: 2004 – 2017
  • Completion of ongoing trials for neovascular AMD: FDA approval: Macugen 2004; Avastin 2004; Lucentis 2006; Eylea 2011
  • Earlier identification of eyes at risk: regular use of OCT (Optical Coherence Tomography) and other diagnostic tests
  • Prevention trials: results AREDS2 released 2013
  • Increased number of retinal specialists: eg, American Association of Retinal Specialists (ASRS), formerly Vitreous Society (see 1982 above), has 2700 members representing 60 countries.
  • Other developments:
    • 2011 First baby boomers turn 65
    • 2004 Facebook
    • 2013 first ‘bionic eye’ retinal implant, Argus II approved by FDA
    • technology:
      • 2007 Amazon Kindle e-reader; iPhone & Apple IOS
      • 2008 Android 1.0 & Android phone
      • 2010 Apple iPad
    • technology/low vision aids:
      • 2005 Apple VoiceOver for Mac users
      • 2009 VoiceOver added to iPhone IOS
      • 2010 FDA approved implantable telescope
      • smart glasses/wearable technology
      • 2014 KNFB Reader app for Apple & Android; 2017 for Windows 10
    • ongoing research areas:

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Timeline Part 1: Advances in Treatment & Care for People with Macular Degeneration
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News: August 9-12, 2016

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Welcome!

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 awful disease.

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.

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Resources

Please read the disclaimer.  I will also admit that I have not read every word of every reference.  I’m just trying to provide resources to help you do your own research in addition to what we have found. – Linda…

updated August 27th, 2017

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 to take several quizzes to test your knowledge of the disease
  • 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.
  • Click here for a summary of AMD research and developments in the past 12 months (posted June 2016)

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

listed in no particular order

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Websites containing information about AMD

listed in no particular order

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Support

Message Boards including ones from
By postal mail
  • 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

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Books and reading materials

Specific Titles

Sources of Books

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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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Possible causes/contributing 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

Genetics

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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