Before I Go

Waiting a bit before I bathe and get clean clothes on to start the trip. Hate to start out in half dirty duds. Not to mention a half dirty me!

Just got another phishing email. Jeez. I never even knew I had an account in that bank! And to top it off, their noun/verb agreement was wrong. Grammar and usage as fraud detection. One more reason to pay attention in language arts.

Moving on…

Living Well With Low Vision had a recent post on subretinal implants for dry AMD. We are back to Steve Austin again. Remember the Bionic Man? “We can rebuild him? We have the technology?” Yep. Now we are featuring the Bionic Senior Citizen.

We have talked about the Argus 2. That doesn’t appear as if it is ‘for us’ just yet because the quality of the image is poor. Sort of falls under the heading “something is better than nothing”. If you got nothing, it is great. Those of us who visually “got something” might be best to wait some on that.

The new one is called PRIMA by Pixium Vision and it is being developed by the French. Now we are talking early days on this. Just coming out of animal trials so don’t get too excited just yet.

PRIMA is a tiny, wireless subretinal implant that could speed prosthetic vision up to the speed of video. The French team, according to Pixium Vision CEO Khalid Ishaque, built on a concept that initially came from a team at Stanford. Real cross cultural and multinational initiative. Probably a political statement there but I won’t get into that.

PRIMA goes into phase 1 trials sometime in the next couple of months in France. They are starting with five patients with advanced geographic atrophy.

Concurrently, Pixium Vision is petitioning the FDA to try to get U.S. feasibility studies up and running. That could take a while but it is in the works. U.K.? Sorry guys. No clue. Anyone know the reciprocity laws between France and Great Britain when it comes to medical technology and research?

Adding one more, short article review here. They are also experimenting with using lasers to ‘zap’ floaters. The laser they are using is the YAG laser. Neodymium-doped yttrium aluminum garnet is a crystal. Just in case you wanted to know. No? OK. I won’t go into that.

While this type of laser has had multiple uses in ophthalmology up to this point, they are just beginning to use it to play Asteroid Blaster with floaters. Comments published in the Medscape article suggest great care be taken in using YAG lasers for this purpose. More and better organized clinical trials are needed.

That is pretty much it for now. I will be ‘WiFi enabled’ for two more days. After that, I will be shipboard. Online time is obscenely expensive at sea so I will actually have to shut up for awhile. Do you think I can stand it?  [Lin/Linda: anyone want to bet on this? ::grin::]

Written October 29th, 2017 Continue reading “Before I Go”

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Some of Yours

Just logged on to check my email and the first thing I found was another phishing attempt. Oh, for crying out loud! These things are coming faster and the ‘phishermen’ are getting bolder.

This one was ‘from’ my email provider. Not only did they want my username AND password but they were also trying for a credit card number. Good grief. Do I look like I just fell off the turnip truck?

The problem is, for every 999 people who have not just fallen off the turnip truck, there is one who has. That is all the scammers need to make a killing.

So, just in case we have a reader who is not ‘scam savvy’, a couple of tips: scammers are often non-English speakers but the messages are in English. Misspelled? Clumsy wording? Be aware. Ask for your password? Run the other way. Soliciting a credit card number from you? Contact customer service and ask them. Do not give a credit card number out to anyone who asks for it. Lastly, check the details on the email. If it come from Sylvester in Syracuse you probably have a scammer.

Anything suspicious can get forwarded to your service provider. I also label anything from that sender as spam so I don’t have to deal with him again.

Just another public service announcement.

Oh! And I just noticed something wild. My service provider lists as ‘tells’ for phishing attempts the following: asking for personal information, mass mailings and details (show details). That spells AMD. How about that? [Lin/Linda: ::groan:: you are REALLY stretching it!!!]

And after all that, I want to talk about pessimism/optimism. Another good grief. I know the shady morals of so many is not necessarily a reason to be upbeat and sunny. My delivery and timing stink. However, if you look at it another way, we are looking out for one another and that is positive. Yes? Yes!

Lin asked me to read Dan Roberts article about how so many of us see a more dismal future than others our age who do not have AMD. The piece says we expect health deterioration and Lord knows how many other bad things just because we have vision loss.

The first thing I thought about was why should vision loss lead to worse health than any other sensory or orthopedic or general health issue? Sounds like the depression talking to me.

Roberts emphasized there being so much reason for optimism with all the tools and medical breakthroughs. I agree with him totally on that. That is part of the reason we continually share news on research and ‘toys’.

However, what I think his real message was was this: the study did not differentiate between those actually getting the information, the training and the support and those who are not. Roberts asks what the differences would be. He also asks – about knowledge and skills training lapses – the question “why not?”.

You see things and ask “Why?” but I dream things and I say “Why not?” – George Bernard Shaw

(And, yes, JFK paraphrased it a bit but he took it from Shaw.)

Part of the reason for this website is to spread knowledge and to spread hope. Every day progress is being made. Every day things are happening to make our lives – as the visually impaired – easier.

Know someone without knowledge? Someone without hope? Give him some of yours. We want to be able to say “Dan, we hear you and we are trying to do our part.”

Written October 29th, 2017 Continue reading “Some of Yours”

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Research: Dry & Wet AMD

Hello! I am going to get to the article Lin found on BrightFocus Foundation’s website about ‘lamp stuff’ aka lampalizumab but first I wanted to quickly mention a Google Talk by Isaac Lidsky. The title is Eyes Wide Open.

Lidsky began losing his sight to retinitis pigmentosa when he was 13 years of age. Although he has been totally blind for many years, Isaac Lidsky is extremely accomplished and has developed a philosophy that includes all sorts of concepts such as being present in the moment, doing what works and not abdicating responsibility for your life to your personal heroes and villains. His half an hour Google Talk may make some people rethink their attitudes towards their sight losses.

While I don’t expect many people to feel ‘lucky’ they are going blind – and Lidsky does consider his blindness to have been a blessing – Lidsky’s perspective on things can be thought provoking.

OK, onward to ‘lamp stuff’. We have quoted Joshua Dunaief before. One of the most helpful things he does for me in the current article is give us a pronunciation guide for lampalizumab. It is lamp-uh-liz-you-mab. Sort of like “Lamp!…uh, Liz, you mad/b?” You know, what you say when you knock over Elizabeth’s favorite light.

We have gone over the study results already in these pages. Complement factor I variant folks got kickin’ results. The rest of us, not so much. A reason for genetic testing for us before we submit to needles in the eyes, literally!

Dunaief says results are expected in 2018. Yep, December is their target date for publication. He does not mention phase 3 is over this December as is indicated in clinicaltrials.gov.

So, basically, still not really sure what is happening with ‘lamp stuff’ and me. May be offered it in December. May not be. May accept the offer. May not. I would love to know my genotype as compared to the SNPs they found in the experimental sample. Being a responder would be incredible. Being a nonresponder would be very bad. Dilemma.

And information for our ‘wet’ friends for my last 200 words. In JAMA Ophthalmology Jackson, Boyer and Brown reported the results of an experiment with an ORALLY administered vascular endothelial growth factor (VEGF) inhibitor. In other words, they have been experimenting with a pill they hope would do the same thing as your anti-VEGF shots.

The stuff is a tyrosine kinase inhibitor. It caused a lot of upset tummies and diarrhea (5 and 6 subjects out of 35 respectively) but the side effects were not bad enough to stop the experiment. Some people did stop because of liver problems. Those with liver issues would probably not be candidates for the treatment.

Only 40% of the total required rescue shots. Even those people received fewer injections than they had without the pills.

Before you all rush out for your X-82 pills, bear in mind this was a phase 1 experiment. That is safety and tolerability, guys. They are moving on to proof of concept, phase 2, with a bigger n. (n being the number of subjects in the study, remember). Check clinicaltrials.gov if you are interested.

Remember we all do our part in this fight. If you have a strong liver and a strong stomach, X-82 might be your kind of research. You might get to be a lab rat before I do!

written September 2nd, 2017

Continue reading “Research: Dry & Wet AMD”

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The Winner Is…Genetics!

I just tried to read the article listing the different genetic variants that have been associated with AMD. The complementary system in Age-Related Macular Degeneration: A review of rare genetic variants and implications for personalized treatment is declared the winner!

I admit defeat! Maybe I can study genetics for a decade and come back for a rematch.

I can sum up what I learned in about two sentences. The great majority of SNPs associated with AMD appear to be on chromosome 1 where the complement immune system is coded. SNPs cluster around the location of Complement Factor H although there are also large numbers of mistakes in the neighborhoods of Complement Factors i,2,3,9 and B.

The second thing I learned is this: the rare forms of AMD are coded for in other places. These ‘outliers’ are being studied in genetically-isolated groups such as the Amish.

Side note: The Amish are a closed, religious and cultural sect. Pennsylvania is a population center for the Amish. Therefore, here in Pennsylvania they live in association with us although not necessarily among us.

The Amish have all descended from an initial group of about 200 families. Because of the close inbreeding they suffer from a variety of genetically based problems such as dwarfism, Angelman’s Syndrome and several metabolic disorders. Being such a ‘natural laboratory’ for study of the founder effect, the Amish have allowed much genetic testing on members of their community. One of the conditions studied? Age-Related Macular Degeneration.

For more information on the Amish, check Wikipedia or your favorite reference.

OK, so it is not strictly info on AMD, but man does not live by vision loss news alone. I find that sort of stuff interesting. Hope you do, too.

And quickly back to the AMD stuff – because I only have about 200 words left – the Audacious Goals Initiative is still working hard to stamp out blindness. I found a better article on the mouse-zebrafish experiments on their page at the National Eye Institute. This article stressed how the Muller glia cells from the zebrafish had been able to be transformed so beautifully they were electrophysiological indistinguishable from interneurons cells. They had integrated well on both ends of the connection required and were sending signals to the brain. In other words, the zebrafish cells had changed and connected so the blind mice could now see.

Very preliminary work but exciting. The article cites a lot of problems such as: there are not quite enough zebrafish eyes to satisfy the demands of potential research. It might be best to find ways of coaxing regeneration of existing cells in our own eyes. Save the zebrafish!; you understand.

Just one more amazing bit of research and discovery that some day will eliminate Age-Related Macular Degeneration and allow people to see….I’m just glad there are people out there who are a helluva lot smarter than I am to do the research. Now, anyone want to explain the genetics to me?

written August 27th, 2017

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Overcoming Uncertainty

Medical treatment is a very uncertain proposition. Writing for the Journal of Graduate Medical Education Wray and Loo quoted Sir William Osler as saying “Medicine is a science of uncertainty and an art of probabilities”. The authors report that rarely is evidence of benefit totally clear-cut when a treatment has been administered. Also, it is rare for practitioners to agree totally on a treatment.

Sometimes opinions are expressed in such a robust manner by both that the patient is left in a quandary. How are we supposed to know who is correct? What are we supposed to do now?!?!

Wray and Loo suggest doctors (and others) look at the evidence. Is there evidence suggesting one treatment is superior to another? What does the research say?

Lin and I are big on research. The truth will be seen in the research. Notice I used the word will, future tense.

Work being done on AMD causes, treatments and maybe even cures is in its infancy. Like all infants, things are subject to change. The infant with blonde hair and a little button nose who you think looks just like your father may grow up to have brown hair and a ‘beak’ just like his uncle on the other side of the family! Final results subject to change without notice. Wait and see.

So many doctors don’t like to say they don’t know. Wray and Loo say it is a mark of professionalism to be able to discuss the pros and cons AND the uncertainties of a treatment, but how often does that happen? Maybe there is not enough time. Maybe they are uncomfortable being fallible. Maybe they think we can’t take it.

Wray and Loo talk about the emotional burden of uncertainty. Uncertainty is nerve-wracking. Many of us feel better believing any plausible nonsense than being told there is, as of yet, no answer.

The problem with believing strongly in something uncertain just so we HAVE an answer? When you find out your life-preserver is actually a cement block, you are too invested in it to let go!

How to handle uncertainty. I actually had to smile because when I went online what I found was totally in line with DBT.? If you want to go back to the DBT pages, have at it.

Travis Bradberry, a positive psychology proponent, shares 11 Ways Emotionally Intelligent People Overcome Uncertainty. Bradberry tells us our brains are hardwired to react to uncertainty with fear. He quotes a study in which people without information made increasingly erratic and irrational decisions.The diagram Bradberry showed was a brain and his caption said “uncertainty makes your brain yield control to the limbic system. You must engage your rational brain to stay on track”. Sounds three states of mind-ish to me.

Beyond that, Bradberry suggests calming your limbic system by focusing on the rational and real, being mindful of positives, taking stock of what you really know and don’t know, embracing what you cannot control (also known as accepting reality), focusing on reality, not trying to be perfect, not dwelling on problems, knowing when to listen to your gut, having a contingency plan (what I have always called plan B), not asking what if questions and – guess what! – breathing and being in the moment.

Hope this helped some. Remember this journey is not a sprint, it is a marathon. In fact it is a marathon that we don’t even know the course. Keep an open mind and don’t latch onto anything out of fear. Eventually we will find the way.
Continue reading “Overcoming Uncertainty”

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Whoopsie!

Whoopsie. Errata alert. I discovered the NaturalReader does NOT support Kindle like I thought [see previous page Jabbering]. This is because Kindle books are DRM (Digital Rights Management) books. Also iBooks, Nook and Adobe Overdrive. DRM is related to copyright laws. There are ways to get around the software ‘locks’ and you can easily find these offered on the web. However, they are illegal and we try not to encourage criminal behavior. Rumor has it scofflaws use something called Calibre. And that is what I know about that subject. ? [Lin/Linda here: I had to look up ‘scofflaws’ in the last sentence.  It is “a person who flouts the law, especially by failing to comply with a law that is difficult to enforce effectively.”]

I looked at Gutenberg.org and found titles like “The Paper Currency of England Dispassionately Considered”. Whoa.

Numismatists study coins AND paper money (thought it was just coins). Hopefully they would be enticed by that title. Me? Not so much.

So far on a cyber search of non-DRM ebook sources I find nuthin’. So for right now for ebooks on NaturalReader I guess it is Gutenberg.org or nothing. Remember if you are legally blind like moi, you can get BARD. I am just finishing listening to John Sandford’s Golden Prey. Love Lucas Davenport. Also, ebooks will zoom on a tablet so those with less of a vision loss can go that route. Sorry I fed you bum info.

And in other news, I passed the 100 mile mark on my bike today! This summer I have been using it for transportation. I realize for many of you your cycling days may be behind you; however, for those of you who can still ride and live in an area conducive to bike travel, it can be an option. Traveling at 7 miles an hour it is easier not to run into things than when you are traveling at 70 mph.

Of course, I almost had my first accident today. I was riding in the street parallel to some guy on a Jazzy (electric wheelchair) on the sidewalk. He decided he wanted to go across the street, swerved right and nearly took me out!

Maybe I should get a bell for my bike…or one of those horns with the red bulb. Anyway, glad I was able to avoid him. How do you explain being taken out by a Jazzy? It would be humiliating.

And because I am again prattling about things totally unrelated and of no great importance – and because I need about 150 more words! – I wanted to ask if you folks knew we are creating great investment opportunities? OK, maybe not us personally but I found a BusinessWire report on Global Age-Related Macular Degeneration Partnering Deals. They are hyping advice about buying into research and development of AMD treatments! They think people can make buckets of money off of us!

Now, some people may think it is rather opportunistic of these potential investors, but I think it’s great. The only way they can make said buckets of money is to invest in treatment we will buy. That generally means something that will work. If research is stirring up enough interest for people to be buying AMD specific investment advice, things have to be happening!

And that is the end of this page? Continue reading “Whoopsie!”

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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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