I Tried My Best

I was raised to be responsible. I am responsible. I go to work and the job gets done. I have done the job between bouts of vomiting, with fevers and with migraines.

I am responsible but I am not crazy.

OK. Maybe the word is not crazy. However, I am definitely not one for not using good judgment or not looking at the big picture. Now, this is especially true when it comes to my vision.

I was at a professional gathering on Friday. One person there asked me about the circumstances of my sight loss. This person had an eye bleed that had started on Tuesday! That is three, count them, three! days. I advised an immediate trip to an emergency room. I told this person his sight could be very much at risk but was told in turn he had other, important obligations to attend to and he would, essentially, get around to it later.

I tried one more time and was again rebuffed. Are we truly our brother’s keeper? I wanted to call 911 and get this person to the hospital. That would not have been appreciated, but would he have appreciated my efforts if I had saved his sight? If he gets to a doctor sometime next week and gets told he has done irreparable damage to his vision will he appreciate I tried? Will he wish he had listened?

I assume our readers have more common sense, but since assuming can make an ‘ass of u and me’, I am going to spell it out. Never, as in NEVER, ignore an eye bleed. Mary Lowth wrote about vitreous hemorrhages for Patient. She stated vitreous hemorrhages are one of the most common causes of sudden, painless vision loss. Vision can be totally obscured by blood in the vitreous. Even if nothing serious is wrong that caused the bleed to begin with, you can be left with floaters. Not to mention blood is cleared from the vitreous at the rate of only 1% a day. That is over three months of impaired vision!

There is a whole list of things that can be horribly wrong to cause bleeding in the eye. Because I have dry AMD and have been warned about the potential of developing wet AMD, a bleed due to neovascularization was the first thing I thought about. There is also diabetic retinopathy and posterior vitreous detachment. PVD can be associated with a tear in the retina. None of these are problems to take lightly. [Lin/Linda: if you ever see what looks like a curtain drawing over your visual field or part of your visual field is obstructed, that IS an emergency which requires IMMEDIATE attention because it can mean that you do have a retinal tear. Most PVDs are accompanied by lots of floaters & sometimes flashes of light that are more noticeable at night (that’s the vitreous tugging at the retina. If in doubt, call your doctor.]

Lowth stated “retinal detachment must be excluded urgently”. In other words, should you have a bleed, run, don’t walk to the doctor and make sure your retina is still where it is supposed to be. Waiting three days is not an option.

Some of you are also sadly aware that bleeding can cause scarring and even more significant vision loss. Bleeds should be diagnosed and controlled as quickly as possible.

So, there you have it, some people believe they have more important things to do. They believe satisfying responsibilities is more important than taking care of their eye health. These people are wrong. If you even think you have an eye bleed, get to your doctor.

As for this person yesterday, I tried my best. Matthew 10:14 [“And if anyone will not receive you or listen to your words, shake off the dust from your feet when you leave that house or town.”]

written December 3rd, 2017 Continue reading “I Tried My Best”

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Diffy Cults

Just getting a quick page or two written before I am off. That is off as in off on vacation not as in “she is a little bit off.” That happened quite a while ago.?

Still hoping to get my loaner CCTV before we leave but I doubt it will happened. A friend of my husband’s is watching the house. He promised to take delivery and pack up my machine to send for repairs.

I am still hoping against logic that this will all be settled by the time we get back. Cockeyed optimist; so shoot me.

Of course, I have found several interesting web articles now I don’t have a lot of time to go over them and no CCTV. Since I don’t have my machine to put them on to read, I put one on NaturalReader. Let the iPad read to me. [Lin/Linda: to read all about NaturalReader, go to Sue’s page Let Me Read to You.]

Some of the pronunciations are a bit ‘off’ as well. D.O., doctor of optometry, comes out as ‘odd’. I guess she calls them as she sees ’em!? She? It is a female voice on my machine. Not sure if I could change it if I wanted. Never tried.

Found something called Practical Guidelines for Treatment of AMD. The pamphlet says with all of the rapid advances in potential treatments for AMD it makes it “diffy cult” for practitioners to know what will be “Benny Fish All” to their patients.? Gotta watch those “diffy cults”. Not to mention that Benny Fish All. OK, OK, so I am easily entertained.

The article suggests doctors are not proactive enough in the early stages of the disease. It suggested something like 78% of AMD patients have substantial, irreversible vision loss already at the time of the first treatment. This includes 37% who have become legally blind by the first treatment. Yikes! It goes on to state not all drusen are a result of AMD and doctors may hesitate to make the diagnosis on the criteria of drusen alone. There is also the patient variable involved. Will the patient believe she is losing her sight and do something if there is no acuity loss? Will she freak? Stay tuned….

The article suggests using dark adaptation problems to emphasize there is a real problem even when acuity seems just fine. It quotes statistics dark adaptation is an excellent predictor of age-related macular degeneration and is, indeed, 90% accurate!

In other words, if you know someone who has a lot of problems with dark adaptation, suggest they be checked for AMD. There is evidence problems with dark adaptation can be detected up to three years before the disease can be detected through clinical measures.

Later….There is a lot more in that article, but I have to sign off here. Too much over 500 words and I turn into a pumpkin. Watch out for those “Diffy Cults” and if you run into “Benny Fish All” say hello for me. After all, he is the kind sort. Me, I’m going to crank up my loaner CCTV. It came today!

Written October 27th, 2017 Continue reading “Diffy Cults”

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Sue’s Best Pages – Part 1

If you are new to our website, you might have looked at the LONG list of Sue’s pages and felt overwhelmed.   I hope this series of “Sue’s Best Pages” will help you to navigate through some of them.  We hope you will eventually read them all.

Spoiler Alert – why should you read these pages?

After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends.   We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.

For the newly diagnosed
  • You need to start In The Beginning.  Follow the sequence of pages with the links that are at the bottom of each page.  The first 13 were written in the early days of this journal.
  • Page 13 “A Human Doing” is where Sue starts to talk about her experiences with Pennsylvania’s Office of Vocational Rehabilitation’s Bureau of Blindness and Visual Services.  Because she wanted to continue to work, they were instrumental in getting her the assistive devices and training she needed to do that.
  • Of course, we hope you continue to read from there.  If not, please continue with the next section.
Pages highly recommended by our readers

We ask readers to rate the pages.  I’ve taken the ratings and comments to select these pages.

How She Does What She Does

Sue was 62 when her vision deteriorated so quickly that she had to stop working and driving. She could have started early retirement but she is not the ‘retiring’ type. ::smile:: She contacted Pennsylvania’s Office of Vocational Rehabilitation’s (OVR) Bureau of Blindness and Visual Services (BBVS).  The services she received included low vision, technology, orientation & mobility and rehabilitation.   Counselors for each of these services came to her home and workplace to deliver assistive technology, software and training. There was a one-time co-pay based on income. Some people pay nothing. Sue paid a small fraction of the true cost of the services, software and devices.

166.  A Day in the Life which covers the time she is not working.

288. A Day in the Life: Work Day

Continue reading “Sue’s Best Pages – Part 1”

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Testing…1…2…3

Back again after vacuuming the living room and filling both the washer and the dishwasher. Starting to wonder which is worse. I have always been a little crazy but tackling some of this research stuff is, well, nuts!

“How do you know I’m mad?” said Alice.

“You must be” said the Cat “ or you wouldn’t have come here.”

Now that THAT is settled….the article, Clinical Endpoints, etc. talks about how using spectral domain OCT can even predict where GA will spread in your macula. With no way to stop it, I might want to be ignorant of where the condition will hit next, but the authors opine being able to discover new biomarkers may indicate new directions for therapies, something we want to hear.

The article then moved over to the wet side of the street. I only had testing for wet AMD one time. They shot me up with ‘carrot juice’ aka beta carotene, and then used what was probably either fluorescein angiography or indocyanine green angiography to look for leaks.

Back to a more general discussion, did anyone ever put electrodes on your corneas and shine a light in your eyes? Multifocal electroretinography measures the strength of the signal coming off your photoreceptors when exposed to light. And I am just full of bad news today, but there appears to be a diminution of the signal strength even in early AMD.

We have talked at some length about dark adaptation and contrast sensitivity. We even mentioned the contrast test they talk about, Pelli-Robson. Allow me a moment of satisfaction for that one?.

On to one I never heard of: microperimetry. This test put stimuli on very specific parts of your macula and you hit the old button if your see them. Your fixation point is monitored so if you “cheat your sweet patootie off” like I do – in other words use eccentric viewing instead of putting my poor, ravished fovea on the target – they will know.

Other than suggesting where on your retina you can actually put your eccentric viewing, the ‘maps’ from microperimetry also give an idea of where the atrophy is going to spread. Not that I want to know perhaps. And even more bad news is the study quoted found even functional macular tissue was compromised.

I think I need to stop reading this cursed study. It is depressing!

Okay, the last section of the article talked about quality of life. Finally, back to my neck of the woods. Remember: social scientist here.

And some last thoughts:

It is just fine to put problems you cannot solve away until you actually have the resources to deal with them. In DBT (and no, I have not forgotten about that) it is called pushing away. I share good news and bad. It is up to you to pick out the things that are helpful and put away the information that is not helpful or depressing. Even the depressing findings add to our knowledge base and lead us towards treatments and maybe even a cure. Let the researchers deal with the depressing stuff.

“I don’t focus on what I’m up against. I focus on my goals and ignore the rest.” – Venus Williams

October 8th, 2017 Continue reading “Testing…1…2…3”

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Know the Terms

Happy Saturday! Miserably 3H today. That is hazy, hot and humid. A Pennsylvania summer day at its finest. I don’t mind this. It is the type of day I would head off for the swimming hole when I was a kid. Good memories. However the husband hates it and the Beastie Baby, elderly and with lung disease (cancer?), is not thrilled.

Nine days in and she is still not looking as if she is at death’s door. Dare I hope? Still just taking it a day at a time.

I went to the Y this morning. I was cleared to TRY some things that would involve my shoulders. Got about halfway through yoga before I got ouchy.

Time to go back to major modifications. Grrrrrrrrrr…. I really am trying to be good. It is not easy.

Once I got home – and discovered I had zero motivation for any real work – I decided to write a page. Topic, topic,….TOPIC! How about visual impairment?!?!?

I always explain I am visually impaired, not blind, not low vision, etc. Some days I say I am legally blind. I have never been totally sure I am legally blind, though. I know I had to be legally blind in order to get the services I got from the state but maybe someone fudged a bit? I don’t actually feel legally blind.

But I digress. What are the proper terms anyway?

VisionAware published a list of terms. They say low vision is the preferred term these days. (Does anyone else have trouble keeping up with the ‘acceptable’ terms recently? I am always woefully not PC.) Low vision is uncorrectable vision loss that interferes with daily activities. Low vision’s definition is functional. If you cannot get enough correction to do what you need to do, it’s low vision. Sort of a subjective definition.

Legally blind Is a term used by government agencies. It is not subjective. If you want to try for disability or get goodies, you need visual acuity of 20/200 or less in the better eye with best correction. Another option for qualifying would be no correct letters read from the 20/100 line on the new charts.

Please note I said in the better eye. That means there has to be impairment in BOTH eyes. We have had clients insisting they qualify for help with only one ‘bad’ eye. Not the case.

The other way to qualify with dear Uncle Sam is to have tunnel vision. Tunnel vision is 20 degrees of arc or less in the better eye.

Remember that is with your better eye and with optimum correction. Those of you with only one involved eye again don’t qualify for help.

And as I get to the end of the article, I find my preferred label, visually impaired. Visual impairment is sort of a general term. It covers the gamut. You can be moderately, severely or profoundly impaired and still fall under visual impairment. Visual impairment and its levels are objective rather than functional as defined. The World Health Organization uses these levels in their work.

So, when all is said and done, I guess I can still tell people I am visually impaired. It is still an acceptable term, but you can say your are low vision, too. Don’t get too attached to your terminology, though. These ‘label’ things can change like the weather!

written July 22nd, 2017

Continue reading “Know the Terms”

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One Foot in Front of the Other

We recently had a reader ask how it is possible to maintain hope, faith and optimism, etc. when “everything” is slipping away. She stated she does not want this disease because she had watched it “destroy” others. Her friends do not want to associate with her because of the “doom” she is facing.

Oh, my…where to start. First of all, I guess I need to say “I’m with you! I don’t want the damn thing either.” But wanting it or not wanting it really does not make a bit of difference. We do not get to make decisions like that in our lives. We only get to accept (or reject, but if you fight reality, I can practically guarantee you will waste a whole lot of energy and in the end, still lose. To paraphrase “I fight reality, reality always wins!”). We also can find ways of coping.

That appears to be a magic word: cope. This is not a fatal disease. If you are still breathing and conscious, you are capable of dealing with things and trying to make them better. Your hope is in every breath you take. Breath.

Remember one of my favorite people whom I never met, Viktor Frankl, said “the last freedom left to any man is determining how he will react to his circumstances.” This disease will not destroy us. It may take things from us, but not destroy us. We destroy ourselves through our reactions to it.

Our reader may not realize it, but she IS coping. She reached out to this website. She has sought professional help and she is involved with the state services for the visually handicapped. She is doing what she can do.

We don’t have to like having AMD and losing sight. We don’t have to be happy about it. We just have to keep moving. I mentioned this before but another one of my favorite, never met people, Winston Churchill, said something like “when you are going through Hell, keep going!” It is in pouting and denying reality – in stopping in the middle of Hell – that we are destroyed.

To address the part about being hopeful, optimistic, etc, a bit more, there are times all of those pretty thoughts are going to desert us. Times there seems – as in appearances and impressions – there is no hope. Those are the times we simply put one foot in front of the other. Determine what is next and do it.

I have been told I am “in love” with DBT. I am, for the simple reason it works. Mindfulness and staying in the moment work.

For example, the Beastie Baby has been diagnosed with lung cancer, but right now she is sleeping peacefully on the floor next to me. Right now, life is good. We will take one day at a time, one hour, one moment if need be. We will not grieve (much) and ruin life when things are good. Lesson: stay in the moment. Deal with the now. By dealing with each moment as it comes, we can handle a scary future. Buying future grief and hardship is a bad investment.

I could address the absolutes – always, never, everything – but I won’t. Not much, at any rate. We just need to remember few things in life are truly that black and white, that cut and dry. Every dark cloud has a silver lining and every silver cloud has some dark inside.

This has been a little jumbled, but that, after all, is my mind. I guess in summary, what I want to say is:

Accept this is happening, Recognize you are not powerless, we all have choices we can make.

Understand if we take care of each moment as it comes, the future will take care of itself. Don’t get ahead of yourself.

We don’t need to be hopeful or optimistic all of the time (even though there is reason for hope). If you cannot muster any faith in your future, just put one foot in front of the other and move. You will be surprised where you end up.

Continue reading “One Foot in Front of the Other”

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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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