macular degeneration, macular, diagnosis Resources/Organizations – My Macular Degeneration Journey/Journal

Sue’s Toolbox Update 2023

Sue wrote most of this, of course. My comments are in [ ]. When you see any text that is a different color or underlined (varies by the device you’re using), you can choose it and go to a page with more information. It’s called a link.


Hi! Lin asked me to update my “toolbox” page. It has been three years so it might not be a bad idea. [Sue & some others call me by my ‘childhood name’ Lin, but I’m also Linda ::grin::]

Lighting!

I stand by most of what I said in 2020. Good lighting is essential. ​I was told to get LED lights when I started this journey. I have Ott brand lights and they work well. They also last forever. [You can often find the Ott lights on sale at the JOANN store.] The bulb in the light next to the bed has been going strong for seven years. The LED lighting is cool to the touch and reduces glare. If you have vision issues, you know how much “fun” glare can be! Not! Reducing glare is a real plus in lighting.

Magnify, Magnify, Magnify!

When you have advanced, age-related macular degeneration there are a few, simple rules: magnify, magnify, magnify!

I remember walking home from elementary school to find my grandfather trying to read the newspaper with a handheld magnifying glass. Same thing with my father several decades later. However, these days, it is not your father’s magnification any longer!

My workhorse is my closed-circuit TV magnifier (CCTV; also called video magnifier). They are expensive, but for me, they are indispensable. I take notes, pay bills, sort out my taxes, everything on that machine.

My CCTV is a portable model from Low Vision International. It has a sliding tray and a camera I can flip to view presentations and people across the room. I got the model you can hook up to a computer, but I have not used that feature yet. [Where to find these devices and other low vision aids? Check my section at the end ‘Finding Help to Create YOUR Toolbox!’]

Computer

And speaking of computers, my iMac is also an essential tool in my toolbox. I learned on a Mac, so that is my platform of choice. While Macs are relatively expensive compared to other brands on the market, they also come with a magnification feature built in. [Great resource for learning about using a Mac from Perkins School for the Blind ‘Getting Started on the Mac for Users with Low Vision.’]

This is as opposed to PCs that need you to add a magnification app. My magnification app for a PC I use is ZoomText. ZoomText not only magnifies, it also gives you voice over. Voice over is a “drive-me-crazy” feature that reads what you have put the cursor on and what you are typing. Right now voice over is enough to drive me insane, but it may be very helpful in the future. Either way, ZoomText is not free but is affordable. [Her reference to ‘voice over’ is not the same as Apple’s VoiceOver feature.]

iPad

I am typing this on my iPad. I purchase the BIG iPad with a 12.9 inch screen and I love it. My iPad not only magnifies but holds a number of apps that help me with the little inconveniences of being visually impaired. When I need a professional reference book, I buy a hard copy but also request a pdf version. I am on record with several publishing houses and they are required by law to provide those to me. Disability does have some privileges. Once I download the pdf version into NaturalReader, my iPad reads to me and I follow along in the book. [Hadley has great ‘how to’ videos on using an iPad.]

I can also “read” books on my iPad. Since I am legally blind, I am qualified to use BARD. BARD is great! There are hundreds of thousands of audiobooks available for free. Love that word free. [BARD is just one resource available from the National Library Service program ‘That All May Read.’ For those who qualify, there’s also an easy-to-use audiobook player with cartridges you can get.]

I go in spurts and stops with my “reading” any more, but I watch TV on my iPad regularly. There are a number of broadcasting companies that offer free apps. While they regulate what you can access for free, they do let you access more if you have a cable company and register. I like watching Tv on my iPad because I can “magnify” the picture by shrinking the distance to the screen. Another thing you might be interested in is audio description. I watched ‘All Creatures Great and Small’ on PBS and the audio description was helpful and not intrusive.

Other Tools for Magnification

Two more things before I go: magnification and magnification. I have a handheld, electronic magnifier that is good for restaurant menus and the like and a pair of telescopic glasses. My telescopic glasses are MaxTV glasses. I have a friend now who likes to go to the movies. I wear my MaxTV glasses and the 3-D glasses at the same time. Avatar 2 was stunning. [Her MaxTV glasses are from Eschenbach, a company considered to be one of the best for such products. There are less expensive products you can find through sources such as Maxiaids or Independent Living Aids. I don’t recommend you try the least expensive, though. Read the reviews and definitely make sure that you can return them for free if they don’t work for you.]

So there you have Sue’s Toolbox, 2023 version. I will be the first to admit the price tags on those things can be a bit shocking. Just remember the three important points: magnification, magnification, magnification. The same results can be accomplished in other ways. Hope this helped!


Finding Help to Create YOUR Toolbox!

Low Vision Therapy

Linda: We recommend that since there are so many options for these and other low vision aids, some of which are expensive, it’s best to find a low vision therapist, low vision occupational therapist, or a vision rehabilitation program where specialists will listen to what you want and need to do but can’t and will help you find what works for you. There is no ‘one size fits all.’

We recommend that to find low vision therapy near you, start by going to the VisionAware site to ‘Directory of Services’ (bottom or side of the page depending on what device you’re using) where you’ll enter your zip code (US) or province (Canada). In the UK, there are 2 great groups who can help: The Macular Society and the RNIB. You want to look for non-profit organizations, universities, or government resources where they’re not profiting from the sales. You can of course ask your eye specialist for organizations/specialists near you.

Vocational Rehabilitation

In 2016 when Sue became legally blind from advanced dry AMD/geographic atrophy/GA, she contacted Pennsylvania’s Bureau of Blind and Vision Services/BBVS because she wanted to continue to work. You can read about that here: A Human Doing. They provided some of the low vision aids such as the magnifiers, telescopic glasses including MaxTV glasses, the CCTV, software ZoomText and NaturalReader, a basic iPad, and a white cane. They also provided her with some training on some of the devices. She also had what’s called Orientation & Mobility training to help her get around safely. She did pay a fee based on a sliding scale of income. Every state will be different.

You can find your state or province vocational rehabilitation resources through the link to VisionAware above. You can also ask your eye specialist about it.

More Resources

A good resource for products and technology is VisionAware which is a not-for-profit organization with the APH (American Printing House). Check out this section ‘Helpful Products and Technology for Living with Vision Loss.’

Magnifiers and telescopic glasses that she refers to are called ‘optical devices.’ Here’s a good article about them with examples ‘What Are Low Vision Optical Devices?’


New March 19th, 2023

Myopic Macular Degeneration: Understanding the Basics

by Frank Chen (see his biography at the end of the article).

The prevalence of myopic macular degeneration is on the rise worldwide, and new research is providing greater insight into this complex condition. As our understanding of the condition continues to evolve rapidly, staying up-to-date on the latest developments is crucial — starting from the fundamentals.

Myopic macular degeneration is a debilitating eye condition that affects millions worldwide, leading to a gradual loss of central vision. Like age-related macular degeneration (AMD), myopic macular degeneration affects the central part of the retina, causing symptoms such as blurry vision, distorted vision, and loss of visual acuity.

However, myopic macular degeneration is primarily associated with high myopia and pathologic myopia, which affect people at a younger age than AMD. In this article, we will discuss the key terms and definitions related to myopic macular degeneration, its causes and prevalence, and the treatment options available to manage the condition.

Understanding the Key Terminology of Myopic Macular Degeneration

Myopic macular degeneration is an eye condition that is becoming better understood through ongoing research. As we learn more, terms and definitions evolve or are added to our understanding of this condition. Here are some important terms to know:

Myopia: This is a common refractive error that causes distant objects to appear blurry. It occurs when the eyeball is too long, or the cornea is too curved, causing light to focus in front of the retina instead of on it.

High myopia is a more severe form of myopia, usually defined as more than -6.00 D in diopters. It is often confused with pathologic myopia, which causes degenerative changes in the back of the eye.
Pathologic myopia occurs when the eye grows too long, leading to changes in the back of the eye. These changes can cause problems such as blurry vision, difficulty seeing in low light, and even vision loss.

Myopic Macular Degeneration (MMD) is also called myopic maculopathy (MM); it is one of the most common types of pathologic myopia. It occurs when the cells responsible for sharp, detailed vision in the eye start to die. And patients gradually lose central vision.

Myopic chorioretinal neovascularization (myopic CNV) is also referred to as myopic macular neovascularization (MNV) in many publications. It happens when abnormally new blood vessels grow under the macula. As blood and fluid leak into the macula, it damages the retina cells, which leads to vision loss.

Causes and Prevalence of Myopic Macular Degeneration

Myopic macular degeneration is a condition that affects the central part of the retina, known as the macula, and causes it to degenerate. This can result in symptoms such as blurry or distorted vision, dark or empty areas in the field of vision, and a gradual loss of visual acuity over time, similar to age-related macular degeneration (AMD).

The exact cause of myopic macular degeneration is unclear, but several factors are believed to contribute to its development. These factors include elongation of the eye, cracks in the retina, and protrusion or bulging of the back part of the eye (myopic conus).

As myopia is becoming increasingly common worldwide, studies found a rise in the prevalence of myopic macular degeneration. It was projected that by 2050, around 50% of the global population could have myopia.

Furthermore, the risk of developing pathologic myopia, which could lead to myopic macular degeneration, increased with higher degrees of myopia. Age was also a significant factor, as individuals with high myopia aged 40 or older had a higher risk of developing pathologic myopia.

Studies showed that pathologic myopia affected approximately 1-3% of Asians and 1% of Caucasians. Pathologic myopia was identified to be the leading cause of irreversible blindness in several Asian countries. While in Western countries, it ranked as the third leading cause of blindness. Both ethnicity and country of origin seemed to play a role.

Treatment for Myopic Chorioretinal Neovascularization (Myopic CNV)

Several treatment options are available that can help slow the progression of myopic chorioretinal neovascularization (myopic CNV) and improve vision. The primary treatment for myopic CNV is anti-VEGF therapy, which includes several different drugs like ranibizumab (Lucentis), aflibercept (Eylea), and conbercept (Lumitin). Although bevacizumab (Avastin) is not FDA-approved for myopic CNV, it may still be used as an off-label treatment due to cost.

In cases where anti-VEGF therapy is not suitable, verteporfin photodynamic therapy (vPDT) may be recommended. However, vPDT didn’t show significant improvement in visual acuity and could damage the retina cells, leading to a worsening of vision instead. Therefore, intravitreal anti-VEGF therapy is considered the standard-of-care treatment for myopic CNV. As with any treatment, there are benefits and risks. Therefore, it is important to discuss treatment options with your healthcare provider to find the most effective and appropriate treatment for your specific situation if you have myopic CNV.

Key Takeaways

In conclusion, myopic macular degeneration is a serious eye condition that affects millions worldwide, leading to a gradual loss of their vision. While it shares similarities with age-related macular degeneration, myopic macular degeneration is primarily associated with high myopia and pathologic myopia, which affect people at a younger age. With the rise in myopia prevalence worldwide, understanding the latest development, starting from the fundamentals, is essential.

Fortunately, there are treatment options available for myopic chorioretinal neovascularization. And it is fueled by ongoing research and innovation, providing hope for a bright future for people living with this condition.

About the Author

Frank Chen is a highly experienced health educator and medical writer with almost two decades of experience in the healthcare and pharmaceutical industries. He holds a Bachelor of Science degree and an MBA, and is also certified in nutritional sciences and medical writing, bringing a broad range of knowledge to his work. Frank is deeply committed to enhancing patient health literacy and promoting better patient outcomes. His passion for helping patients understand their health conditions is evident in his exemplary education work for ocular conditions at clearsightcorner.com.

Frank has collaborated with top medical experts in ophthalmology, diabetes, and cardiovascular fields throughout the years. He has also played vital roles in developing and implementing patient communication or support projects that have had a profound positive impact on the lives of hundreds of thousands of patients across multiple countries.

Article published Feb. 25th, 2023.

Back: Guest Author Pages

 

Sept. 2019 – Our Cub Reporter: Notes from an Awareness Program Page 2

by Joann Davis continued from Page 1

The final presentation by Dr. Mali was “New Treatments & Innovations for Macular Degeneration & Diabetic Eye Disease”.  

  1. Iluvien – Steroid implant for DME.  0.19mg fluocinolone acetonide intravitreal implant lasts for 3 years, provides daily treatment, and provides 15 or more letter improvement at 24 months.
  2. Brolucizumab  – Anti-VEGF  that is more powerful than existing treatments in controlling bleeding.  Studies show over 50% extend to 12 weeks. May get FDA approval this year.
  3. Abicipar Pegol has a new molecule – DARPin – and has allowed over 90% of patients to go to 12 weeks with stable vision.  May get FDA approval next year.
  4. Faricmab – another new molecule – Anti-VEGF & ANG-2 combo injection.  In trials has extended to 16 weeks.
  5. PDS – Port delivery with ranibizumab (Lucentis).  This is exciting, as it uses a refillable implant that lasts for 6 months.
  6. Stem Cells – Early trials for Wet and Dry AMD have proven safety.  Next trials will attempt to prove effectiveness in replacing damaged cells.
  7. Gene Therapy – This has been proven to work with other retinal conditions and is in early trials.  A virus modifies cells to produce proteins lacking due to gene not working properly. Approved for retinitis pigmentosa.  One goal is for your cells to make their own anti-VEGF protein.
  8. Future Home Monitoring – Home OCT for wet AMD to pinpoint need for next shot.  Prototype has been built and FDA approval could be in next 2-3 years.

Dr. Mali ended with an Infomercial for the Mali Eyeglass Holder for Slit Lamp Microscope and Table.  He invented this and you could use it at home to store your glasses anywhere you can use a clamp or Velcro to attach the eyeglass case.  Prices start at $19.99.

Back: Guest Author Pages

Shopping

My Blindness and Visual Services caseworker stopped in to say “hi”. He remarked a common client had hit a snag in plan A and he was moving him to plan B. Plan B was to be the Carroll Center.

Quite frankly, I had never heard of it. I have only been legally blind for 3 ½ years, guys. I can’t know everything! However, in an attempt to know “everything” I looked it up.

I will give you more on the Carroll Center itself later, but where I jumped into their webpage and where I want to start here is the store. They have CCTVs for rent! Be still my wildly beating heart! The cheaper ones are $25 per month. The more expensive ones are $50.

This is a deal! CCTVs like mine run $3,500. You own it. You repair it. I have had to send it for repairs about three times in three years. Average repair price? Let us say $200. Even renting their most expensive option, the price of one CCTV would cover six years of rental. If it breaks? Send it back and get a new one.

I really like this idea for the budget minded “blind”!

The other thing that caught my interest was a new product the Carroll store is advertising. They are touting this super cool item locator for the price of $26. The system comes with one transmitter and three receivers. You fasten the receivers on to things you are always losing. Keys, my phone and the remote come to mind immediately. The receivers are color-coded and there are three, color-coded buttons on the transmitter. Hit a button and the receiver on an item sounds a tone.

Knowing myself, I think I would want to find a permanent home for my transmitter. Maybe glue it to a table. It is well within the realm of possibilities that I would misplace the transmitter!

Looking at the range of categories of things the Carroll Center has for sale, I would say they pretty much rival Maxi Aids. It is always good to have options.

Now, I will try to pull myself away from shopping and tell you a bit about the Carroll Center. According to their website, the Carroll Center is nearly 90 years old. It started as a Catholic charity but now appears to be non-denominational. Visually impaired? You’re in.

Located in Newton, Massachusetts ( 800-852-3131), the Carroll Center serves all ages and all levels of visual impairment. They advertise services for children all the way up to seniors. For seniors they offer independent living programs such as essential skills, diabetes self-management, orientation and mobility and technology. It appears many of these programs are offered on campus there in Newton. A temporary relocation may be necessary. However, if they are as good as their website suggests, it could be worth it.

Funding? No clue. I know state agencies like BBVS will fund if you have a chance of going back to work. Remember they are part of vocational rehabilitation and their mandate – and most of the budget – is to get people back to work. If you are not a good candidate for employment, funding will have to come from somewhere else.

So, need services? Live in New England? The Carroll Center might be your ticket. And now, if you will excuse me, I am going back to shopping!

Written Sept. 16th, 2019

Next: FIGHT THE GOOD FIGHT

Tips & Tricks Thursday – Holidays: Giving to Charities

Most charities have multiple ways to donate: one-time donation, regular donation, purchasing their products, set up a Facebook or online personal fundraiser, employer matching programs, gifts in memory of someone, leave a gift in your will, becoming a volunteer, donate goods.

Double check the information for the charity you are interested in. I might have missed some of the details especial in regarding ways to donate. Also, check to see if your donation is tax deductible. When buying products, you may have to deduct the value of the product.

Articles with Links to Charities

Charities That We Monitor
  • Macular Society
    • supports people and research
    • donate online, attending fundraisers,  you can create a Facebook fundraiser,
    • shop: they have cards and products including Christmas cards
    • type of company: non-profit
  • Foundation Fighting Blindness(US)
    • Facebook page and website 
    • supports people & research in many countries
    • donate online ($ donation, donate in memory of, workplace donation & more), you can create a Facebook fundraiser
    • also can set up a personal campaign page
    • type of company: there are several divisions, one is a 501(c)(3) . You might want to check with them before you donate.

Charities Where You Can Set up a Facebook Fundraiser

They also have web pages and various other ways of making donations.

 


Helping People with the Disease Continue to Write About Their Experiences

I don’t know if these would be tax-deductible.


** This is NOT complete.  Can you help me add to this list? Send the information to me at light2sight5153@gmail.com or add it in the “Reply To” section of the page.

 

Sue on Assignment – Special Topics

When Sue announced that she was going to take a break from writing journal pages, she asked if anyone had any topics that they’d like her to research. It didn’t take long for ME to find several projects for her.  I’ve also gotten requests from readers.  If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!

AREDS2 Study & Geographic Atrophy (2 pages)

Money for Assistive Technology (2 pages)

Non-genetic Causes of Macular Degeneration (2 pages)

Got Milk? Research on Calcified Eye Spots

How to Conduct an Experiment for Yourself

How She Sees What She Sees

Altitude and AMD (2 pages)

Be My Eyes

Coping Fatigue (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)

Mitochondria – Part 1 (2 pages)

Photobiomodulation

Why Read My Pages? My Answer

Independence

Independence

Getting Food to Come to You

Supplements

Resveratrol: Efficacy Not Yet Proven for AMD

CBD Oil: Safety and Efficacy Not Yet Proven for AMD

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

Astaxanthin: Has Potential But Not Backed by Scientific Evidence for AMD

Linda on Assignment

Me and My Cocoons – 2 pages

Electronic Glasses for Low Vision – SeeBOOST

Headworn Low Vision Glasses and Goggles – 2 pages

 

More to come!

Have an idea for a page for Sue? Let me know at light2sight5153@gmail.com

Sue on Assignment: Money for Assistive Technology – page 1

It has been a little over two years since I started using technology for low vision. I wrote page after page about my “toys” and how they were making my life better. [Lin/Linda here: her last update about what she uses on a daily basis is Sue’s Toolkit – 2 Years Later.]

I remember one reader made a comment along the lines of this: I was wealthy and could afford to buy myself thousands of dollars of equipment. He wanted to know what I thought someone with few resources was supposed to do.

To begin with, I am not wealthy. I am a professional, and we are probably slightly above average for the middle class. Second point, except for replacements (a lot of technology does not bounce when it is dropped. More’s the pity!) and repairs, I have paid nothing for my equipment! That is nada, goose egg, a big, fat zero.

I have said it repeatedly: everything was purchased for me by the Bureau of Blindness and Visual Services. They are a branch of the Office of Vocational Rehabilitation in Pennsylvania. And that can be a problem. I was young enough, loved my job and desperately wanted to go back to work. The agency was willing to pay several – probably more than several, actually – thousand dollars to keep me paying taxes and off of the disability rolls. [Check out Sue’s page Salvation: Vision Rehabilitation Revisited.]

Great for me. Not so great for those of us who are older, retired and have no capability or inclination to go back to work. Our state BBVS will pay, last I heard, about $600 for equipment and services for those people. That will buy maybe 1/6th of a CCTV. Now what?

First of all, I would suggest pursuing help from a state agency anyway. $600 is $600. Second point: I borrowed two CCTVs from our county library while mine was in the shop. The ones I borrowed were shoved in a corner and never used. A library card and a gratitude donation got me out of a fix. You may be able to make a similar deal.

Quite a while ago I ran a page on an assistive technology reseller. Some states have agency-run “swap meets.” Donate what you can no longer use and take what you need. Free. I think the best one I found was Massachusetts.

Sam of the Blind Life reported some of his clients found used technology at yard sales. He also suggested keeping an eye on eBay and in pawn shops. [Check out Sam’s video Why is Assistive Technology So Expensive?]

Other options? Enhanced Vision has a site that lists grant sources for assistive technology all across the country. Not only do they list many of the state-sponsored grants, but they also list several private organizations that will pay for part of the cost of the equipment. I will go to some of these sites and see what I find out.

…hmmmm, just had a thought. Enhanced Vision sells adaptive equipment. Yes? Yes. If you find something they sell that you really want and cannot afford, would they suggest a funding source? Just a thought. Somebody want to try?

Ok. Sue, Girl Detective, on the case. See what I can find…and whatever happened to Nancy Drew, anyway?

Written September 21, 2018

Next: Sue on Assignment: Money for Assistive Technology – page 2

Go back to the list of “On Assignment” pages

Sue on Assignment: Money for Assistive Technology – page 2

Hi! As promised I am looking at some of the funding sources suggested by Enhanced Vision.

Here is the disclaimer: we know NOTHING about any of these funding sources. Legit? Dunno. Shady? Dunno. I mention them only because they might – remember might – be helpful to people trying to find ways to fund assistive technology. Nothing is guaranteed and nothing is recommended. Caveat emptor.

Moving along then, the Digital Federal Credit Union offers what they call Access Loans. They are for up to 72 months (that is six years) and you can borrow up to $25,000. The interest rates are between 8 and 10%. There is no down payment required.

Check with your own bank and take a look at their rates. My bank advertised personal loans “as low as 9.5%.” That means the DFCU deal is most likely better than my bank. Make sure to check rates in your area before applying.

The Association of Blind Citizens sponsors the Assistive Technology Fund. Sorry everyone outside of the States but this one is residents only. The ATF (and no, that is not alcohol, firearms, and tobacco) will pay up to 50% of the retail price of assistive devices and software. The price should be between $200 and $6000.

In addition to requiring applicants are legally blind, they also have income and asset guidelines. It does not appear you have to be a member of ABC but I am not sure. Grants are awarded twice a year. These grants, like many, appear to be based on need.

The National Assistive Technological Assistance Partnership is said to have the mandate to maximize the abilities of individuals with disabilities to access and obtain assistive technology devices and services. I went to the website and saw nothing about $$$. Does not mean it is not there. After all, I AM visually impaired.

For our friends in the UK, I stumbled upon the Gardner Trust for the Blind. They are based in London and may provide grants for education, training, and household items. They also mentioned the possibility of pensions. [Lin/Linda: This webpage actually lists several sources of financial help including the Gardner Trust for the Blind, Guide Dogs, MACS, RNIB Grants, Victa, The Vision Charity, and links to a few others.]

….unfortunately I am three or four pages into my search and the ones I have listed above keep repeating. Other than these, the major players are the state organizations and the Lion’s Club. It does not appear there are many private organizations that are willing to help with the purchase of assistive technology.

That does not, however, mean the search is over. Do you have low vision equipment? Where did you get it? Has anyone tried to get low vision assistive technology as “durable medical equipment” from insurance? How about Medicare? What would make low vision technology “medically necessary”? Let’s get creative, people!

Written September 21st, 2018

Next: Have a topic for Sue to research? Post it in the comments or email it to light2sight5153@gmail.com.

Go back to the list of “On Assignment” pages

What Can I Do to Slow the Progression of AMD?

There ARE things you can do to battle AMD. These are the recommendations backed by research. Since we don’t yet know what causes AMD in any individual, we don’t know which of these are more effective than others. We do know that there are many factors that influence the development and progression.

I have included a few self-help tips, too.

These are NOT in any order except for number 1.

Remain hopeful!! There is a lot in the pipeline–>http://www.retina-specialist.com/…/pipeline-update-whats-ex…

1. Don’t smoke. #4 and many others.

2. Risk of AMD is 50-70% genetic, the rest is age and lifestyle factors below. High genetic risk of AMD? Lifestyle factors such as nrs. 3, 4, 5, 6, 7, 11 are important. #4

3. Follow the Mediterranean diet, on the low carb side, esp. low sugar. #4 #1 and others

4. As part of the Mediterranean diet, eat lots of colorful veggies, esp green and leafy which have important carotenoids in them. #4 #1 and others

5. Omega-3 supplementation? If one’s diet is rich in healthy oils, some nuts, and fish such as wild caught salmon, some say supplementation is not necessary. #4 #1 and others

6. Moderate aerobic exercise. #1 and others

7. Drink enough water to stay hydrated. #1 and others

8. Reduce stress. Although it is common to have depression & anxiety when you get the diagnosis (and can recur as you do your research, please seek help if you cannot move past this–especially if you have thoughts of harming yourself. #3 #16

9. Wear sunglasses when outside: polarized, blue block. #9

10. Working on the computer – use built-in screen colors to reduce blue light. There’s no firm evidence that electronic devices give off enough blue light to harm our eyes. It does affect our sleep which is important. #17

11. Maintain overall good health including maintaining a normal BMI, normal blood pressure, normal cholesterol. #4 and others

12. Moderate AMD or wet AMD in one eye but not the other? Take AREDS2 with zinc if you know you are NOT zinc sensitive (genetic test). If you don’t know or know that you ARE zinc sensitive, AREDS2 with no zinc. #2

13. Use an Amsler Grid or other monitoring systems. #5 #7 #8

14. If by using aids in nr. 13 & symptoms indicate that dry converted to wet, get treated with anti-VEGF as soon as possible. The earlier the treatment, the better the prognosis. #6

15. Have your eyes examined regularly (every 6 months advised) by a retinal specialist who is an ophthalmologist who specializes in diseases of the retina; write down your questions and take them to your next visit. #12

16. TIP: If you have vision impairment, find a low vision specialist who is an optometrist who specializes in evaluating vision and recommending low vision aids. There are also organizations and specialists who can advise you as to how to adapt your home or workplace. #13

17. TIP: Make sure you have enough light and provide contrast since AMD decreases the ability to detect contrast and increases the need for light.

18. TIP: Don’t drive if you are not safe to do so, especially those who have blind spots. You may not realize that you HAVE blind spots that could block your ability to see other cars or things along the road. #10


References

#1 Mediterranean diet reduces risk for AMD–>http://www.aoa.org/news/clinical-eye-care/mediterranean-diet

# 2 AREDS/AREDS2: A Guide–>https://mymacularjournal.com/home/guide

#3 Can psychological stress cause vision loss?–>https://m.medicalxpress.com/…/2018-06-psychological-stress-…

#4 Macular Degeneration Epidemiology: Nature-Nurture, Lifestyle Factors, Genetic Risk, and Gene-Environment Interactions – The Weisenfeld Award Lecture–>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749242/

#5 ForeseeHome–>https://www.foreseehome.com/

#6 VIDEO: Registry shows early detection of wet AMD helps patients maintain better vision–>https://www.healio.com/…/video-registry-shows-early-detecti…

#7 KeepSight monitoring tools->http://internationalmacularandretinalfoundation.org/keepsi…/

#8 How to Use the Amsler Grid–>https://www.brightfocus.org/mac…/article/how-use-amsler-grid

#9 How to Choose Sunglasses–>http://www.webrn-maculardegeneration.com/sunglasses-and-mac…

#10 Mailbox or Child with self-test–https://mymacularjournal.com/home/mailbox-child

#11 Macular Degeneration: Frequently Asked Questions–>https://www.brightfocus.org/…/macular-frequently-asked-ques…

#12 Ten Questions to Ask Your Doctor about Macular Degeneration–>https://www.macular.org/ten-questions-ask-your-doctor

#13 How Low Vision Services Can Help You–>https://www.brightfocus.org/…/how-low-vision-services-can-h…

#14 Low Vision Rehabilitation and Low Vision Aids–>https://www.aao.org/…/diseas…/low-vision-aids-rehabilitation

#15 Reflecting on ‘grief’ after losing my vision–>http://www.blindintuition.com/reflecting-on-grief/

#16 Highlight: Is depression following the diagnosis of AMD normal?–>https://mymacularjournal.com/archives/5923

#17 Blue light hastens vision loss? ‘Not so fast,’ —>http://www.aoa.org/news/clinical-eye-care/blue-light-transforms-molecules-?refer=rss

Coping: A Review

We are coming to the end of the first dry day in about a week. Apparently, it is “monsoon season” in Central Pennsylvania. Creeks and the river have been running down main roads and getting from here to there has become an adventure in problem-solving, not to mention creativity.

Having clients stranded or pumping out basements has left me with time to “play catch up” and actually get some things done at work. Hallelujah. Not as stressed as I was.

Lin told me there has been an influx of new Facebook group members. She reported there are many new members struggling with the diagnosis and wondering about the future. She has been republishing pages about coping skills, but I thought I would do a quick review anyway.

First of all, the chances of you going totally blind are small. Age-related macular degeneration is a condition of the macula and affects central vision. It is important all patients with AMD to learn the facts about their condition. Knowledge truly is power. What we imagine is often 100 times worse than reality. Often that monster under the bed is actually a dust bunny. And no, I am not trivializing AMD and calling it a dust bunny. However, it only has sharp horns and razor-sharp fangs if you give them to it.

Get the facts. Knowing what you are dealing with is a lot less scary than what you imagine.

Along with getting the facts goes acceptance. We cannot solve a problem unless we accept we have a problem to solve! Acceptance that, yes, you are truly in this fix will allow you to go and look for help. Fighting reality may work for a while, but in the end, we get creamed.

I will admit I got more from agencies than many other people get. I admit it. I have a big mouth and a will of iron. I am obscenely stubborn. For another thing, I am still working. People who are not working don’t get as much. After all, in my state Blindness and Visual Services is a subsection of the Office of Vocational Rehabilitation. Their whole goal is to keep you working.

That means ideally, if at all possible, you go to agencies while you are still working or at least are in a position to go to work. If you are not in those positions, go anyway. People who do best with vision loss are those who learn practical skills and get the necessary assistive devices. Even if they won’t pay for your devices, agencies can make recommendations for things you might eventually purchase.

If I had to say which one thing to have, it would be an iPad. There are multiple, free apps that can take the place of more expensive equipment and do the job almost as well.

So those would be my recommendations for starting to cope well with AMD. The start is to reclaim your power. Remember vision loss can be damn inconvenient, but in the end, it is a limiting factor, not a paralyzing one. And in the end, just like traveling in a flood zone, with a little problem solving and creativity, you can get there!

Written August 16th, 2018

Next: I Know Who I Am

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Our Cub Reporter: Notes from an Awareness Program – Page 3

Continued from page 2.
New “treatment”!!

The FDA has approved implantable miniature telescopes that get put in your “good” eye during cataract surgery. (But there are trials now testing putting it in later). Your “bad” eye then is used for peripheral vision and there is a extensive visual training and rehabilitation required as you have to learn how to see all over again. This is covered by Medicare.

Wet AMD Treatment

PDT – cold laser – Visodyne – activated medication inside the blood vessels. No scars or burns caused by the laser.

ANTI-VEGF – the standard of care. He discussed the 4 available injections that are Medicare approved. Eyelea also works on platelet-derived growth factor.

Wet AMD Research!!

Researchers are looking at whether starting injections before you have a bleed in a patient’s “good dry eye” when one eye has gone wet.

Orange County Retina is involved in a lot of studies for new medications that include injections, oral, and drops. They were involved in the Lucentis and Eyelea trials. If you live near Orange County you may want to look into this practice.

Rajiv warned about being careful to avoid unregulated trials and non-physicians doing stem cell injections.

A lot of research is centered on drug delivery improvements. Eye Ontarisis – electricity shoves medication through a contact lens

Post delivery – Genentech – Refillable, sustained delivery implant that is refilled twice a year after initial surgery. Capsule is up under the eyelid. He was part of the trial. This was just approved.

Go to clinicaltrials.gov and look for local participants.

Dry AMD Research

Lamplizumab (Genentech) – the injections didn’t show slower progression (Sue’s Lamp stuff she had hoped to try)

APL – 2 (Apellis)

Go to clinicaltrials.gov and look for local participants.


Stem Cell Research

Stem Cell Trials are using three types of stem cells.

Cell-based therapy – Palucorcel – stem cells surgically placed under the retina. Encapsulated cell technology – capsule is sewn to the wall of the eye to release medication.

Opregen is using human Stem Cell RPE cells for dry AMD treatment injected under the retina.

Regenerative Patch Technology (also the name of company) – Using patch with stem cells on top of it to replace unhealthy cells. USC trial showing promising early results and Rajiv is also involved with this one.

Go to clinicaltrials.gov and look for local participants.

Continued on page 4

Our Cub Reporter: Notes from an Awareness Program – Page 2

Continued from page 1.

A sponsor called VFO is a distributor of CCTVs and other low vision aids that are sold through eye care professionals. They did a very short introduction and had a display table in the sponsor area at the back of the room with lots of magnification aids.

A Patient Ambassador – Larry – was sponsored by Regeneron. He has wet AMD and is a retired Physics teacher. His mother and six of her siblings had AMD. Sunglasses and annual eye exams were the only advice his mom got. Larry has to use a magnifying glass when he plays Euchre (card game popular here in the midwest) to tell hearts from diamonds and clubs from spades. He still cuts firewood and mows his lawn. Life with AMD is like a physics science experiment – when things go wrong, you just make changes.

He checks his Amsler grid and calls the doctor for changes. He wears sunglasses and continues treatment and regular eye exams. Larry says you don’t have to be afraid. Keep doing the same activities and keep traveling while you can.

Dr. Rathod then gave his presentation on AMD. He says there is a new diagnosis every 3 minutes. Most of what he talked about has been thoroughly covered here and in the group, so I will just highlight things of special interest.

Dry AMD makes up 85-90% of those with AMD and affects one in ten people after age 70. Wet AMD makes up 10-15% of those with AMD and has a sudden onset. Dr. Rathod says to ask for a referral to a Retinal Specialist (RS) as soon as you are diagnosed. Call your RS for any sudden change. Keep going to your ophthalmologist because your RS doesn’t really want to deal with your other eye issues like dry eye, cataracts, etc. (I asked this question in the Q & A)

Dr. Rathod recommended genetic testing to know your risk for progression to advanced AMD and to know which vitamins you can take safely. He talked about the AREDS2 studies and findings.

Continued on page 3.

Our Cub Reporter: Notes from an Awareness Program – Page 1

by Joann Davis

Joann recently attended the seminar ‘Your Eye Sight Matters! 2018’, an awareness program organized by the Macular Degeneration Association. These seminars are held in various locations in the US.  She’s generously sharing what she learned.  For more information about the agenda for this program which was held in Skokie, IL, on July 28th, 2018, click here.  The agendas for all of them are similar.


As the My Macular Degeneration Journey/Journal cub reporter, I will first describe the overall conference agenda.

They held the conference in a hotel ballroom with a nice breakfast set up outside. Pre-registration was done over the phone. The conference is presented by the Macular Degeneration Association, which is a 501(c) (3) non-profit supporting research and education. The founder and chairman is Larry Hoffheimer, a former federal prosecutor with the US Dept of Justice and a practicing healthcare attorney. Larry kicked off the meeting and served as the MC. The executive director, Donna, was also in attendance.

The two main speakers were Rajiv Rathod, MD, MBA, a Retina Specialist with Orange County Retina in California and Greg Hines, President and CEO of ArcticDX. Greg is the former CEO of a pharmaceutical company and lives in Toronto, CA.

Regeneron Pharmaceuticals is the primary sponsor of the conferences. Other sponsors are providers of products and services for the low vision community. Locally, the Chicago Lighthouse was a sponsor and provided info on their many services including their Seniors Program for those over 55 with low vision or blindness.

I sat next to a cool lady with advanced wet AMD who runs a low vision group in Des Plaines, IL. Like Sue, she had to wait for the special bus to pick her up when we ended a bit early. I gave her info on our group, and she should be joining soon.

Rajiv presented two technical topics. The first was Diabetic Macular Edema (DME), which is the leading cause of blindness in working people in industrialized countries. DME is caused when high blood sugar damages the small blood vessels in the eyes and causes the leakage of fluid, swelling of the central retina and blurred vision.

Treatment includes laser, intravitreal injections, and surgery. They have stopped using lasers because the lasers burn the macula and create blind spots. Primary treatment is the same anti-VEGF injections that wet AMD patients receive. DME can also be treated by the injection of steroids. Vitrectomy Surgery is used to remove scar tissue and is only used in very severe cases.

Prevention includes controlling blood sugar and blood pressure and getting annual screening exams if you have diabetes.

Continued on page 2.


About Joann

Joann Davis is 70 and has recently been diagnosed with mild dry AMD in both eyes. Her mother and grandmother both had AMD and her son has the genes. Joann also has cataracts, floaters, and dry eyes. With glasses, her vision is 20/40. Joann spends most of the year in northern Illinois and the winters in Ft. Myers, Florida. Joann is retired but very busy with numerous board memberships. Joann exercises every day, beginning with yoga, crunches, planks, ‘boy’s pushups’, weights, and then a long walk. Joann wants to do as much traveling as she can while she can still see and is heading to Italy soon and plans to go to South Africa next year. Joann’s career was in technology and cybersecurity sales, and she still belongs to cybersecurity organizations where she gets to hang out with the FBI and Secret Service.

These are not her first pages.  Check out her series Rookie in Training.

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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Hawaiian Eye

Memorial Day evening. Thus endeth another holiday weekend. I did not get my to do list ‘ta done’ but it was a respectable effort and I am done. Time to kick back just a bit. [Lin/Linda: couldn’t find a formal definition of ‘ta done’ but I guess you could say it’s the past tense of ‘ta do’ – I found headlines with variations of “From Ta Do to Ta Done!”]

We got the pool semi-clean and in working condition. We have not put the diving board up in years but the pegs for it are still there. I kicked one so hard yesterday I broke most of the nail off of “this little piggy had none”.

Ouch. Those pegs have now been spray painted a lovely, brilliant white. Contrast, my dears, contrast. No more mangling little piggies.

Here I am on a stem cell kick. I go to see the good doctor this week and I am ever hopeful I will get into a stem cell study. I have to wonder – with the fantastic results they seem to be getting with RPEs lined up and supported on a ‘patch’ – if the studies that just inject the stem cells will be stopped and reworked. The Astellas study I am signed up for is one of the ‘squirt them in’ sort. Slightly discouraging but the wait might be worth it if results will be better. [More about the studies Sue is signed up for in her page The Waiting Game.]

I am not the only one who is thinking about regenerative medicine. The injunctions I mentioned last time appear to be part of a concerted effort by the FDA. The FDA is hoping to generate some standards for stem cell research. They are thinking standards will allow for greater levels of predictability in the outcomes. After all, if you undergo a treatment, you expect a certain result.

There are more than just one or two unregulated stem cell clinics out there. CNN (Predicting the Future, March 2018) quoted the number to be around 570! The main place these are located is Beverly Hills with New York City also having its fair share. The FDA is hoping to invite these into the fold. Play by the rules and the FDA will support your efforts.

And so as to not be too terribly one-sided, I should probably mention some of the stuff that happened at ARVO. ARVO is the Association for Research in Vision and Ophthalmology. They had their meeting in Honolulu and refer to it as Hawaiian Eye.

The TV show Hawaiian Eye ran from 1959 until 1963. Did you realize anyone under 55 never saw the original broadcasts?!? Gee, I wonder if they have to explain the reference to 90% of the attendees! I feel so old!?

Anyway, Genentech is developing a port delivery system to deliver Lucentis over the course of several months. They would implant this little reservoir thingee full of medication and greatly reduce the number of shots. This is in phase 2 so it will be awhile.

The Mediterranean Diet is good for pretty much everything that ails you, including AMD. The study cited suggested a reduction of 39% in the progression to advanced AMD. Remember that generally means they are reducing the chances of turning wet. Wet AMD and geographic atrophy are the two forms of advanced AMD.

Gotta go. I will let you know if anything happens at my appointment.

Written May 29th, 2018

Next: The Waiting Game Continues

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Audio Holodeck?

Now, I am not one for VR. I am not a gamer. At my age about the most ‘gaming’ I do is on Panda Pop. Pretty pitiful.

What is VR? VR is virtual reality. If you are a Trekkie, you might describe it as a poor man’s holodeck. You get the sights and sounds but not the substance. You really cannot pick up that futuristic beer bottle and smash it over the head of the Romulan that you ran into in some out-of-the-way, third-rate planet gin joint. You don’t get the smells of the place either.

If you are not a Trekkie, get with it! No, I mean, if you are not a Trekkie here is the definition for virtual reality according to the online dictionary: the computer-generated simulation of a three-dimensional image of environment that can be interacted with in a seemingly real or physical way by a person using special electronic equipment such as a helmet with a screen or gloves fitted with sensors.

So what does that have to do with us? We have bad eyes and, frankly, we are old ? and not too sure we like where this technological world is going. Or at least that is true for some of us.

But what if I told you, there is such a thing as virtual reality audiobooks? If the floorboards squeak behind you in the story, you actually hear the floorboards squeak behind you? Wow.

According to a July, 2017 article in venturebeat.com, the hot new thing in virtual reality is 3D audiobooks. Put on your headphones, close your eyes and listen.

The mummy is coming up behind you! Don’t you hear his foot drag?!?! Run! I think he is gaining on you!

Binaural (two ears) audio allows us to hear spatially. In other words, we ‘know’ the mummy is behind us and getting closer. This adds a whole new layer of experience to our listening.

Although a Blind Life video that Lin sent me was the first I heard of this, it appears there are quite a few companies that are already excited about audio 3D and offering products for it. When I searched 3D sound headphones I got a whole range of options costing from under $20 to well over $1,000. I also found a number of companies offering 3D audiobooks. It appears many of the titles are science fiction or fantasy although some companies also offer erotica. [Lin/Linda: For the 3D audiobooks I found, you don’t need special headphones.]

While I have not tried 3D audiobooks as of yet, they definitely sound like something I would like to experience. I am thinking the selections of both headphones and audiobooks should expand significantly over the next few years. That is if science fiction, fantasy and/or erotica are not your things!

So, until I spring for a pair of binaural headphones and get to hear what the hype is all about, anyone want to share about some first-hand (or first-ear?) experience with 3D audio? This might be the next, big thing. Let us know what you think. Inquiring minds, ya know.

Written May 6th, 2018

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I Am Bored

Saturday evening. I am bored. I do not want to do a cursed thing that is available to me. Games? No. TV? No. Cleaning? Bite your tongue!

I guess that means I write. I have no clue what I am going to write about. We will be surprised (shocked, appalled, bored to tears) together.

A very long time ago I wrote how it is possible to get newspapers and magazines read to you over the phone. It is called the NFB (National Federation of the Blind) Newsline. If you qualify for BARD, you will qualify for Newsline.

Anyway, according to a recent email, Newsline is expanding their offerings. You can now have the computer voice read you Ebony, Science Daily, Scientific America online and Hollywood Reporter. Definitely a varied group of new offerings.

Assuming Lin has already put the link in but if not, search Newsline in the archives. Info for signing up is in the old page.

Looking at more of my mail, specifically things from Healio, I see we are getting closer to being cyborgs. They have approved human testing on the Orion Cortical Implant. In fact the first patient received the device last month (massdevice.com article). The implant in the brain is supposed to pick up signals from a miniature TV camera mounted on glasses. The feed is wireless. Gets my sick little brain wondering what else it could possibly pick up. It might be a bit distressing to pick up random signals. Hmmmmm….

That is not for us, though. The invention that may turn us AMD folks into cyborgs is called The Prima implant. I also mentioned this some time ago. Now they have gotten approval to do feasibility studies on people who have vision loss from dry AMD.

The Prima sends signals from a glasses camera to an implant that is connected to the optic nerve. It has 378 electrodes. That sounds like a lot but I have the feeling the vision they will have with that will be pretty pixely. Oh well, it is a start.

You folks who use aflibercept (Eylea) to hold your wet AMD in check may want to check out that manufacturer as a possible investment opportunity. Regeneron posted nearly $1.5 billion income for 2017. Whoa, baby! That is a lot of eye shots.

Another one of my pet ideas again: keep in mind we have power. Why? Because we are the ones who are making it possible for companies to make money like that.

And another thing, Healio reported Regeneron posted a QUARTERLY costs of research and development at…ready?…$528 million. For the year, it was over $2 billion.

This is one company, people! Imagine how much money all of the companies in the world are throwing at finding solutions to our problems. How can you say nothing is being done? How can you say it is hopeless? There is no way they would be spending money like that on a lost cause. Bad economics, don’t ya know?

It is now 10 pm and I can go to bed. Don’t have to worry about entertaining myself any longer. Thanks for helping me get ‘unbored’! Night!☺

Written February 11th, 2018 Continue reading “I Am Bored”

Optimistic for 2018

TGIF. Thank God it’s Friday! Not that the weekend is going to give me much reprieve. I have exercise classes on Saturday and a party on Sunday not to mention puppy parenthood, housework and several reports to write.

There is no rest for the wicked. Not that I have been exactly lax. This just seems to be a life with a lot to do…and I like it. I like it!

Nice to see in Newsweek and the Daily Mail that being busy and stubborn lead to longevity. Those of us with a strong work ethic, pure cussiness and a need to be in charge seem to take the years a little more easily.

There is certainly going to be a lot to do this year. In 2018 I turn 65 and need to navigate Medicare and some sort of other insurance for my cradle-robbed husband. My calculations indicate I am losing over $6,000 a year by still working at the school. My pension would pay a lot more. That and my ever failing eyesight suggest retirement from there and working full-time at the psychology practice may be the way to go. I still have some things to check out so we will see. Keep you posted.

We have a big project coming up at the office. We get to be involved in a statewide training for DBT this Spring. I have several ideas about what I want to do with that. I have discovered I really like to teach and I believe DBT is needed by our younger folks. I would love to introduce DBT in the schools.

Like I said, lots to do and I am optimistic about my opportunities. And that includes my opportunities for my vision.

Did you see Luxterna gene therapy is now on the market? Luxterna is $850,000 for a treatment! That is a hell of a lot of bake sales but I would expect many if not most communities would work to buy vision for some little guy or girl.

Remember Luxerna works by modifying the gene RPE65. RPE65 ‘recharges’ chemicals in the retinal pigment epithelial cells so they can still participate in the visual cycle. If they can reprogram RPEs to do that, how much longer before they can modify them for our diseases?

I have it on pretty good authority the APL-2 studies launch again this calendar year. That’s exciting. What is also exciting is I believe the Astellas Pharma stem cell trials will get going this year as well.

Progress is being made. Lin shared a recent article on how they are increasing the success rate for transplanted RPE stem cells.  Optimally RPE cells are to line up and form a single, functional layer of cells only one cell thick. This is everyone nose to tail, all facing in the same direction.

In order to do this the RPEs have to have well-developed primary cilia on them. Primary cilia are little, hairlike things that generally serve as the sense organs of the cell. Lab grown stem cells often don’t have the best cilia on them. When they line up, things can get a little wonky.

Kapil Bharti and the folks at the National Institute of Health have discovered a drug that helps RPE cells grow beautiful cilia. Beautiful cilia cause the RPEs to line up in pretty lines and the results of the transplant are more successful. Ta da!

So, optimistic about 2018? Oh, yeah. You just gotta believe. Every small step is progress. Once again: this is the best time in history to be going blind.

Best wishes for 2018.

Written January 5, 2018 Continue reading “Optimistic for 2018”

Cruisin’

Saturday. I think I am packed except for toiletries. I guess I’m good. Find out once we get on the ship.

I have not done as much research for this trip as I have done for other trips. We planned it fairly quickly. Wanted to get it in before we got a puppy.

I will let you know how it all goes. I just looked up Best Ships for Cruisers with Disabilities. They reviewed the big ones: Royal Caribbean, Celebrity, Disney, Holland America and Princess.

While most cruise lines are pretty good with physical impairments, visual impairment only got about one line of text in each case. Each of them offers Braille on some signs and audio books in the library. Most offer large print menus in the restaurant. In other words, in my not-so-humble opinion, they don’t put themselves out too much. (After all, do they even make elevators without Braille anymore?)

If you have a guide dog, he can also cruise. However, be careful which cruise line you choose. According to Do Cruise Ships Cater to Blindness?, Royal Caribbean will not let your dog off the ship! He has to stay aboard at all ports of call. Holland America has the same rule. Several others allow service animal to disembark as long as they have all their proper papers. Of course, finding out what exactly the proper documentation is your responsibility.

Princess has computers set up with JAWS and Holland America has a similar set-up called Window Eyes. That means you can search the web in their internet cafes and the computers will read it all to you.

Royal Caribbean provided sign language interpretation for the deaf. They also provide orientation tours for the visually impaired. However it appears none of them will provide anything in the way of orientation and mobility for the visually Impaired much beyond that initial guided walk around the ship.

In fact, the “Cater” article outright says some cruise lines strongly suggest, depending upon your level of impairment, you not cruise without a caregiver or, at minimum, a sighted companion. Although I would not want to cruise solo, that can put a definite crimp in some people’s style!

That said, there are ways to travel with disabilities, including visual impairment and blindness, and even if you don’t have a ready travel companion. Organizations like Access-Able and Mind’s Eye Travel come up in searches. While I have never used services from either agency, the owner of Mind’s Eye and at least one of her sighted guides were a year behind me in high school. I can vouch for the women so I am pretty sure I can also vouch for their program and services.

So, no, it may not be as easy as picking up your wallet and passport and going out the door, headed for parts unknown. (Although when I looked up ‘blind travel’ I discovered there are companies that will plan everything right down to choosing your destination. They don’t tell you where you are going until you get there!) However it is possible to travel when you are visually impaired. First leg of my trip is in about six hours.

Written October 29th, 2017

Continue reading “Cruisin’”

Be Prepared

I have decided a poor memory and poor vision leading to no driving is a bad combination. Once again what I planned to work on got left at the office. Really thought it was in my bag.

I have been roaming the house, picking things up, doing laundry and filling the dishwasher but we all know keeping house is not my shtick. (Just take a look at this place!) I did bring one file home to work on. Should do it but I have these articles on disaster and the visually impaired that I ran off, so…

Sue redux! Explain to me why I thought I had actually shut up!

Disasters – and this time I am not talking about my housekeeping – and visual impairment are another nasty combination. According to a 2007 American Public Health Association article, eye injuries are very common during and after all kinds of disasters but yet, at least ten years ago, most emergency response teams know very little about managing eye injury and other problems.

I looked for more recent articles saying they had beefed up the eye injury training for first responders in the last ten years. I found nada. That means these people could very well be scrambling to deal with stuff like penetrating eye wounds, chemical exposure and retinal detachment, not to mention infections and other such things with very little training and materials to do the job. And that means, my dears, we with our progressive vision loss condition are on our own. Not that I would not want the guy with the pierced eye ball to go ahead of me in line, mind you. Just saying, we need to expect to be very low priority.

Wisefamilyeye.com – love your logo! – did a page on preparing an eye emergency kit and putting it in your go bag. They suggest spare, impact resistant glasses. I suggest also having a copy of your eyeglass prescription. You might want to store it in drafts in your email so you can access it from anyone’s device. Wisefamilyeye.com also suggested safety goggles and sunglasses, artificial tears and saline solution (you might want to add an eye cup if you have one) and at least two weeks of prescription eye drops.

I already touched on clean-up with my mention of my bout with flood mud crud. Flood water contains EVERYTHING you can think of. Sewer plants and chemical plants cannot get out of the way so everything they contained will come to you. Safety goggles are a must. Protective clothing, such as heavy rubber gloves and thick soled boot if you can find any. And face masks. Face masks are good.

Essentially, disaster preparedness is just that: being prepared. The American Federation of the Blind put together their own checklist. Their list included having emergency numbers nearby and knowing who to call to get yourself evacuated asap. This could be either a buddy, the local authorities or, even better, both. Let people outside of your area know your predicament and that you might be coming to visit!

If you have a service animal – or any animal! – make plans for him or her as well. Reasonably sure evacuation services and shelters must take service animals. They do not have to take pets and rumor has it, many people recently refused to go to shelters rather than leave pets behind. Do not allow yourself or your animals to be in that position.

If recent events are any indication, we can expect to have more (and more?) disasters as time goes on. Be prepared.

September 30th, 2017 Continue reading “Be Prepared”

Let the Horse Out of Her Harness

I have been very bad recently. I have not been taking care of business like I should. I have been listening to several audio books on BARD as one distraction.

Even though I cannot actually read the books I like to go to the bookstore to browse. I saw the latest J.D. Robb, Echoes in Death, and – praise be! – it was available for free from BARD!

I would like to ‘read’ the new Lisbeth Salander novel (The Girl Who Took an Eye for an Eye), but it is not available yet in BARD. Watch and wait. Anticipate a good read. The new guy is not exactly Stieg Larssen but he is none too shabby either. I am a Lisbeth fan.

Do you have favorite authors? They are probably available on BARD. If I am just browsing, the BARD offerings are overwhelming for me. I have found browsing the bookstore and looking later for titles that interest me is more productive.

I also sometimes check the new offering and download something out of the ordinary for me but that still sparks interest. Mix it up. Keep it fresh.

We took my photos to the competition site this week. Now I get to wait and see how I fare.

I like to go to the photo show and listen to people spout off about my work. This is especially true if I place. Someone always manages to say he could have taken that photo if he had been able to go on that vacation.

When I talked about that to a friend, she laughed and wondered out loud what these people would think if they knew the photographer was ‘half blind’.

I am not sure I would want that particular piece of information to change their attitudes. I am not sure I would want concessions just because I have a vision loss. Let them be snarky about my work. Let them criticize me like they do everyone else. I chose to be in the fray with all the ‘normal’ people. Snarky, sour grapes comments just come with the territory.

Of course, if they knew, I might get a double whammy. I might get criticized not only for going cool places, but also for ‘courting’ the sympathy vote. Damned if you do ….

Up all night (literally) that same night caring for the dog and asleep from 6 pm until the morning the next night. Just trying to recover.

All nighters at 64 do not have the same effect as all nighters when you are 24. God, how did we do it?

Not that they were derelictions of duty. In my opinion, caring for others as well as for yourself are some of the highest callings.

So those things – plus dance exercise and yoga classes – are the reasons my reports have not been done and my pages have not gotten written. Let things get lax but then tighten back up. Today I wrote one report and about half of another. Tomorrow I go to my hospital’s first vision seminar and take lots of notes for pages. Sometimes you just have to let the horse out of her harness. Sometimes you have to put her back in.

Written September 22nd, 2017 Continue reading “Let the Horse Out of Her Harness”

Preparation: Start Now!

Greetings from a rainy Labor Day weekend. Supposedly this rain is a Harvey leftover. We had a ‘little flood’ here six years ago right about this time of the year. What a mess! Hubby and I did not get much of that; we are on a hill. However, I went into town to do some shoveling and needs surveys….Never got so sick in my entire life. Flood mud crud is nasty business, folks. If you are helping, wear masks and goggles. Take any innoculations they offer. I was sick literally for weeks.? Once more, try to profit from my stupidity!

Of course, the good news is what doesn’t kill you can make you stronger. Except for the food poisoning I don’t think I have been sick since! ?

Anyway, in the States Labor Day is the unofficial official end of Summer. That means today before the rain we were preparing for cool weather. The houseplants came in from their summer home on the deck. I picked the tomatoes that had not yet ripened for my friend’s mother. She is supposed to make a mean green tomatoes pie. Ran into a little snag in trying to close the pool, but that will get done before the leaves start to fall.

Preparation. We prepare for Fall. We prepare for holidays. How many of us prepare for vision loss?

Many of you are in the early stages of this disease. I truly believe research will soon make it possible to slow or even arrest the progress of AMD. I believe you could easily be spared the worst of AMD. But just the same, preparation is a good thing.

Harley Thomas is blind. Last February he wrote a piece in his blog. The title was, of course, How to Prepare When you Are Going Blind. Harley (he looks like a nice guy so I will refer to him by his first name) says preparation can give you a sense of control. He agreed with other people I have read in saying starting now to learn skills will make things much easier later.

Harley would approve of us all learning about our disease. He would also approve of how we are coming together for support. He talks about ADA and telling your employer about your sight loss.

There are lots of references and links on Harley’s page. One of them is entitled “What to Tell Your Employer When You Are Loosing Your Sight”. I have not read it yet but somehow I don’t think it says to call work in hysterics directly from the doctor’s office like I did!

Harley suggests habilitation/rehabilitation and independent living courses. He also talks about getting your house organized. All good ideas with links to how to posts. [Lin/Linda: if you’re curious, there’s a difference between habilitation & rehabilitation.]

What Harley does not talk about are transportation and finances. To me, these are huge! I believe trying to get services and benefits from the government can be one of the most convoluted and frustrating things you have ever done. It literally took a couple of months to line up transportation. I had straightened our financial house several years ago when I got an inheritance. If I hadn’t, the income loss could have been problematic. Looking into the basics of getting around and doing what you can to get – and keep – your finances in order is crucial. Start now. You will be glad you did.

Written September 3rd, 2017 Continue reading “Preparation: Start Now!”

Keep On Learning

Hey, there! How many people saw the total eclipse? I am soooo jealous!

Pennsylvania was nowhere near where I ‘should’ have been but one of the teachers bought a couple of dozen pairs of glasses and handed them out. We got to see ‘something’.

However, I understand being able to see totality is AMAZING. Hopefully I will see it before I die…or go blind, or run out of money, or whatever.

One more thing for the bucket list.  To use another old saying, my eyes have always been bigger than my belly when it comes to cool experiences. The list never gets smaller.

Looking around at the people who stood outside and passed around a couple of pairs of eclipse glasses, I realized I was looking at the intellectually curious among us. Intellectual curiosity is a desire to KNOW. It is a good trait because it leads to growth. Huffington Post says intellectual curiosity correlates with happiness. We should all be intellectually curious, happy people!

There are articles about fostering intellectual curiosity in visually impaired kids. After all, they cannot see the glories of the world and be enticed. We want them to want to learn and explore.

I could not find much of anything on fostering learning and intellectual curiosity in the visually impaired elderly. What I did find was reference after reference to the Institute for Learning in Retirement (ILR) and Road Scholar.

They sound rather interesting. ILR seem to be located on a number of university campuses – of course, not here! I need to talk to someone about all these gaps – but a lot of the biggies, like Harvard and MIT, and even some of the not so biggies, like Slippery Rock University of Pennsylvania. Their programs cover a wide range of subjects and are for a fee.

Road Scholar is just what it sounds like. (Unless you thought it was studying maps and/or pavement, in which case you have a very interesting mind!) They take educational trips. This is obviously a for fee program.

I know nothing about either of these. Just offering them up as things to explore if you are interested in furthering your education for fun and/or profit.

Come October my friend has me taking a four evening, continuing education class on the first – which number was Calvin Coolidge? – 30 presidents. Nothing I would have chosen on my own, but it is four evenings out and I might learn something. Like Coolidge was the 30th president! Never say we are not educational.

The point of the previous paragraph being this: local educational institutions in your area may also have continuing education courses for a small fee.

Even a small fee not in the budget? This may be my find for the day: Open Culture. We are talking free, gratis, no charge.  They advertise 1,250 online courses plus audiobooks, movies AND language lessons. You want to learn how to find the restroom in Mali or Ethiopia? This site will tell you what to say. Very cool.

One more way to keep us all engaged in life in spite of our visual impairment. Be curious. Explore whenever and wherever you can. Who knows? Someday you too may be able to ask for the restroom in ten different languages. What? May be an important skill, ya know?

written August 22, 2017

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Managing Medications

Never really thought about it in quite this way, but VisionAware has a series of ‘getting started as a visually impaired person’ posts. Sort of like a starter kit for a hobby. Instead of scrapbooking or constructing terrariums, we get visual impairment. “Oh, yes, did I tell you? I’m taking up visual impairment. This book says that in just six easy lessons ($19.99 each) I can have the start of a very promising visually impaired person. And the book says I can do this at home in my spare time!”

Uh, yeah. Really did not need another hobby…especially THIS one.

That is not to say, however, that a ‘how to’ series for vision loss newbies is not a fine idea. It is such a fine idea I am going to borrow shamelessly from them in writing this, and perhaps another page.

The page I am borrowing from is entitled Products and Devices to Help You Identify Your Medications. In that article they cover all sorts of clever ideas for trying to make sure we don’t poison ourselves. I vote for that!

Some of the suggestions in their article are as simple and low tech as keeping a black tray in the bathroom so you can have contrast to see your pills. Others are more high tech. The one I am going to focus on is a high tech option: audio description.

The VisionAware article mentions several different options for audio description devices to use with your medications. There is one manufactured by AccessaMed and there is another one called Talking Rx. But the one I want to talk about is ScripTalk. Why? Can’t write about everything in 500 words.

According to a disabilities lawyer (lflegal.com), many pharmacies are now offering talking labels and label readers for medication bottles. The lawyer’s website gives kudos to a number of chains. (We will ignore the thinly veiled attempt to drum up litigation business.)

I will get back to offering some chain names in a minute but first let’s talk about how this works. Apparently your pharmacist reads the label information into a device that digitizes the information and puts it on a little label that he attaches to the bottle. When you get it home, you have a reader that will allow you to hear what the pharmacist said.

Now, ScripTalk is offered through CVS, HEB, Walmart and Humana. It is a free service to satisfy the requirements of ADA. Of those four corporations, however, the article lists only the customer service numbers for CVS and WalMart. Got a pen? The CVS number is 800-746-7287. The Walmart mail-order pharmacy number is 1-888-237-3403.

Just because you are not in the States and subject to the ADA, does not mean you cannot get medicine bottle labels that talk to you. I have it on pretty good authority (the Vancouver Sun online from 10/07/2016) Shoppers Drug Mart was sued under Canadian accessibility laws and now offers ScripTalk, and free use of a ScripTalk reader.

In the United Kingdom Boots started offering talking medicine labels in 2006. (My, but the Colonies are Johnny-come-latelies on this!) Not exactly sure what is happening on this issue in Australia. Most of what I found there was about a general relabeling of all pharmaceuticals. Anyone know?

Call your pharmacy and see what they offer in the way of audio description labels and readers for your medications. If they have nothing it might be good to remind them this is an accessibility issue. Nothing then? I heard of this disability rights attorney….?

Have a great evening. Don’t accidental poison yourself.

Written August 11th, 2017

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Talking to Your ATM

Before I get on the topic of this page, I want to give you a quick FYI. If you remember, I mentioned my monocular was full of condensation. Could not see a thing! Although I think many of you know this anyway, I just wanted to remind you: don’t throw it away; dry it out. I plopped mine down in a nice, warm patch of sunshine and it is all better now. Hair dryers work, too. Microwaves do not. Monoculars have metal on them.

And from low tech aids to high tech….automated teller machine, ATMs, money machines, call them what you will, they are practically ubiquitous to modern life. Problem is, most of them require you to see and read that glary, little screen. Yippee.

I have sort of memorized the one I generally use. As long as the questions are the same and the answers are in the same places, I’m good. When I first lost a lot of vision and I had not mastered the routine, it was nasty.

If you are still able to see, don’t just mindlessly push buttons. When you use an ATM, think about what you are doing and master the sequencing and positioning. It will serve you if you lose sight later.

You may not have noticed but many, many ATMs have jacks for headsets. American Federation for the Blind reported there are 100,000 ATMs that are able to be operated by voice just in the States alone. All you need is a headset with a microphone. Plug in and do your banking. The ATM will ‘talk’ to you and guide you through the transaction.

I found a 2012 article from the Telegraph reporting Barclay’s had installed audio technology in three quarters of their cash machines in England and Wales. They should be farther along in the process now. The technology was reported to work with pretty much any standard headset.

The article went on to say Barclay’s had made the modifications when they realized people were being required to share security information in order to make simple transactions. They were also concerned about “small and fiddly” buttons – you guys know how to describe things? – and inconsistencies among machines.

Not sure how many other banks are actually providing talking ATMs. Be sure to inquire if you are interested – and even if you’re not. It is always good to give these people a nudge.

Prashant Naik did a nice comparison between the talking ATM and ATMs with public voice guidance. He reported that each screen is voiced but everything is private because you are hearing it through the headset. If you want to blank out the screen, you can. Naik also remarked upon larger fonts and better contrast if you do chose to use the screen. Naik in fact wrote 24 comparison points in his chart. He concludes the talking ATM is a superior product.

And btw, Naik is writing about India so these things are available internationally.

Once again, I have not tried an auditory ATM myself. I am telling you what I have read. I will occasionally try something and report but at the moment I am functional with what I have and if I bought everything – like headphones with a microphone for example – I would soon be in the poorhouse. Still hoping for some audience participation, guys. Who has used an auditory ATM? Stand and report!

written July 30th, 2017

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