Category: Tips for living with low vision

Me and My Cocoons – A Personal Story, Not a Sales Pitch – Page 2k

Continued from page 1

How do you get a pair of lenses that will best protect your eyes and allow you to block out the glare that makes it hard for you to see but with frames that are something other than black? This is what the customer representative told me about 2 popular lenses for those with low vision. There ARE others that are similar such as copper.  If you have questions as to what will be best for you, contact Customer Service (informatin is below).

Comparison of Low Vision Lenses to Polarized Lenses

You will find both of these lenses and many more on this page.  Each lens has a link to the available types of frames that are available for it.

HAZELNUT Low Vision Lens

  • only available with black frames
  • often used indoors
  • non-polarized
  • 18% visible light transmission
  • UV400 rated for 100% protection from UVA & UVB rays
  • Filters 98% of blue light (HEV)

Amber Polarized lens

  •  14% visible light transmission
  • Polarized to eliminate blinding glare
  •  UV400 protection from UVA & UVB rays
  • Filters 90% of blue light (HEV)
  • Sharpens objects
For Help

The best way to get help is to call toll-free 800-834-2563.  Customer representatives are available on M-F from 6 am – 6 pm PST and I was told that any voicemails during other hours are promptly returned.

Return/Exchange Policy

They offer a 30-day money-back guarantee.  If you want a refund, just send back the glasses and they’ll refund you. If you ordered the wrong size or don’t like the lens, ship them back to the company in the original packaging and they’ll send a new pair.  I ordered the wrong size and did exactly this with no problem at all.  If you have any questions, contact their Customer Service.

Try Before You Buy

What if you’re not sure you’ll like the lens that you’ve chosen? Cocoons are not only sold online, but they are also available in many stores.

The Bottom Line

There are other brands and types of sunglasses available, both fitovers and ‘regular’ ones.  I can only talk about Cocoons because they’re the only ones that I’ve personally tried.  If you have a recommendation, please leave a comment on the page or email me at light2sight513@gmail.com.

Disclaimer

I’m sharing this information based on my personal experience.  Neither Sue nor I receive any money or products from the company.

Written November 2018

 

Me and My Cocoons – A Personal Story, Not a Sales Pitch Page 1

by Linda/Lin  ** See the disclaimer below.

I wrote this in November 2018, but haven’t had the time to check to see if the website is the same or if the products have changed. If you do find differences, I’d appreciate it if you let me know. Thanks! June 8th, 2020.

I bought my first pair of Cocoons fitovers in 2012 and loved them! They were stylish, fit well over my eyeglasses, and filtered out all the ‘bad stuff’ from sunlight. At the time, the danger from blue light outside wasn’t being discussed. As far as the fitover part, I think they would work well without the eyeglasses, too.

I’m hard on things like sunglasses, purses, shoes—accessories in general. My sand-color frames with amber lenses held up well until earlier this year when I noticed the coating wearing thin on the frames and one of the wires in a stem was poking out! It’s amazing they did so well considering I used them year round and especially in the extremely hot Atlanta summers.  I knew they had a lifetime warranty, but I was worried that I wouldn’t be able to get that fulfilled because I’d never registered them. I found the webpage about the lifetime warranty and found that all I had to do was to take photos of the damage, upload them and fill out a form.  For $9.95 shipping and handling, I got a brand-new pair of Cocoons with amethyst frames and grey mirror lenses. I LOVE them!  I feel confident that they’re protecting my eyes and filtering out all the ‘bad stuff’ including blue light from the sun.

Silly me had ordered the wrong size, and I had a question about a product for one of our Facebook group members, so I emailed their customer support. I got a prompt reply from a Customer Development Manager. She answered my question and helped me arrange a return of my new Cocoons.

They have quite an extensive product line, and I admitted to the customer representative that I was a little overwhelmed by their website. I was having a hard time finding the exact specifications for their frames and lenses.  She was patient with my seemingly endless questions.  With her help, I’ve come up with a guide to help you.

What all Cocoons Come With
  • A soft, durable neoprene Cocoons case and an Ultra Soft Lens Cloth
  • A 30-day money-back guarantee
  • A warranty covering all defects in material and workmanship to the original purchaser for life!
  • All lenses block 100% of UV radiation, but different lens tints filter types of light differently.
  • Dealers or online purchases available worldwide!
  • All lenses are scratch resistant
  • The frames block light from the top, sides, and bottom: 360-degree UV protection
  • The frames can be manually adjusted to fit the shape and curvature of your head
How to Find the Right Lenses: Two Ways

There are 3 product lines that I’m focusing on because these are the ones I can speak about personally: Low Vision Fitovers, Fashion Fitovers, and Vistana Fitovers.  You can see all their products on their Shop page.

  • Low Vision Fitovers
    • Not polarized but filter UV & blue light (amount varies with lens)
    • Frames only available in black
    • Lenses increase contrast, reduce glare
  • Fashion Fitovers
    • A wide variety of frames with a gloss finish (7 colors)  and 4 lenses to choose from
  • Vistana Fitovers
    • They offer the same 360-degree protection
    • Lenses designed as one piece from front to side for a sleeker lens design
Find the Lens First

I think you need to spend time on the website which is packed with information and options.  When I chose my new pair, I wanted a lens that not only filtered out the UV rays (they all do), I also wanted blue light filtering (they all have some). I admit that I wanted something other than a black frame. What can I say? ::grin:: I started on this page to check out the details of the Cocoon lenses.  This page explains what polarization is and what it does, gives examples of what some of the lenses do to images in different seasons and then gives the details for each of their lenses regarding blue light blockage and light transmission. There is a link or links that take you to a shopping page where you see all the frames available for that lens.

Big Question: Low Vision Fitovers

Many of you have low vision due to macular degeneration which causes you to be sensitive to glare, and you have problems with contrast. When you go to the Low Vision Shop page, you’ll find that the only frames available are black ones.  It doesn’t state on the page, but I found elsewhere that these lenses are not polarized.  So what do you do if you want a polarized lens and a fashionable frame? I asked the customer representative about this, and she said that …

Continued on the next page–>Comparison of Low Vision Lenses to Polarized Lenses & a Discount Code to Help You Get YOUR Cocoons
Disclaimer

I’m sharing this information based on my personal experience.  Neither Sue nor I receive any money or products from the company.

Written November 2018

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

Salvation: Vision Rehabilitation Revisited – 2018

Salvation comes in many forms. Mine came in the guise of a state agency called the Bureau of Blindness and Visual Services (BBVS).

I had worked in special education for over 35 years when I developed AMD. I had a good working knowledge of what they offered. I never ever thought I would be a client but fate often has plans we cannot predict.

There is a pile of research out there concluding the best adjustments are made by those who learn skills. Depression and hopelessness are lessened in those who can do their own, basic living tasks. Agencies like Blindness and Visual Services are where you get your skills

I had a case manager who helped me coordinate my services. He lined up the tech guy as well as the habilitation lady and the orientation and mobility guy.

Technology for the blind and visually impaired is fantastic. With the tech guy’s assistance, I learned how to use a CCTV and ZoomText. With the help of the habilitation person, I learned about apps for my iPad. There are things available that were impossible to imagine 20 years ago.

The habilitation person also taught me about contrast, UV sunglasses, and several other things. She helped to initiate me into my new “fraternity”, the brotherhood of the visually impaired.

O&M (Orientation & Mobility) training was a bit amusing I wanted to cross the street with my bicycle. The O & M guy brought me a white cane! We ended up compromising and worked on both.

Two and a half years later, I use much of what I was taught. A lot of it is used daily. It was this training that taught me how to get through a day. It was this training that allowed me to return to work. It was this training that saved my sanity…such as it is! This training was my salvation.

Here at Mymacularjournal.com we have tried to pass on much of what these fine people taught me. We hope you have been able to profit from some of it.

The future? No crystal ball here but if I had to predict from the natural history of this disease, I have not reached the bottom yet. There will be losses to adapt to, work around, what have you. I will return to Blindness and Visual Services for more assistance. Maybe even a little extra salvation. Salvation comes in many forms. This agency was mine.

Written September 14th, 2018

Finding Low Vision Rehabilitation
  • One way is to ask your retinal specialist for a referral.
  • In the US and Canada, click here for a searchable database. Not only can you find low vision rehabilitation, but there are other categories for your search as well.
  • Worldwide, click here for International Agencies, Centers, Organizations, and Societies.
  • There are other sources as well.  Do a search for ‘low vision rehabilitation’ with your city and country name.

Next: Salvation: DBT Revisited – 2018

“Wrap Up” Blindness in our Lifetime!

Money! Money, money, money, money…MONEY! (O’Jays- 1973). Healio reported the University of California at San Diego has been given a $50 million dollar grant to found a research center specializing in ophthalmological research. The areas focused on will be glaucoma blindness and retinal degeneration. They are hoping the new center will speed the pace of discovery and innovation. The philanthropist was Andrew Viterbi.

Also in Healio, it was announced Wills Eye has received a $5 million grant to establish the Vickie and Jack Farber Research Center at the hospital. This $5 million from the Farbers comes on the heels of a previous $2 million gift. It also follows up a large grant for the establishment of the Vickie and Jack Farber Institute for Neuroscience at Thomas Jefferson University. The target of future research is to be neurological and eye diseases.

And want to know something crazy? Jack Farber’s corporation has roots in this area, North Central Pennsylvania! If you have ever bought ribbon from Berwick Offray (world’s largest manufacturer of decorative ribbons and bows according to Wiki) or seasonal decorations from Paper Magic, you have contributed to these philanthropic gifts. Cool.

Apparently, the take-home message here is keep wrapping those gifts…lots of ribbons! Let’s “wrap up” blindness in our lifetimes! (Ouch!)

Unfortunately, I am not a multimillionaire, so I guess I have to make my contributions to the cause smaller…a lot smaller. Like prattling along on this page, for example.

Saturday I went whitewater rafting for the first time since I lost my central vision. Now whitewater rafting is not really high on the lists of a lot of people, but I love being on the water and this was one of the things I wanted to do to get back to “me.”

I found a local group of people young enough to be my grandchildren, (if I had any) and I went along with them. Everything went swimmingly – no pun intended and no, I did not fall in. The welcome I got was great. They even suggested I come along caving in December…uh, no, thanks.

Going with them was a tad unorthodox, but sometimes you simply have to do what works. Effectively, that is.

You want to know my biggest challenge all day? Engaging the zipper on my life jacket! It made me realize jacket and coat weather is right around the corner for us here in the northern hemisphere. And I am woefully unprepared.

I looked online for some great wisdom about relearning how to engage zippers after sight loss and I did not find much. The advice they give is the same advice you gave your preschoolers: practice, practice, practice.

So, today’s suggestion is to check your winter coats and see if they have buttons or zippers. You might be a bit better off with buttons (maybe. I misbuttoned a blouse the other day). If you have zippers, now is the time to practice. Asking strangers to help dress you can be a bit humiliating….it was a good thing the girl fitting life jackets was very nice.?

Written September 5th, 2018

Next: Red Hair?

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Life After Vision Loss

I have been ignoring you. This is my first page in eight days.

I have not been ignoring you on purpose. I have been having what I consider to be a raging case of seasonal allergies (my husband swears I caught a germ) and fighting that. I have also been doing other things such as going to exercise, a benefit supper and work. September we go back to the second half of our “free” training, and I need to have my homework done.

I say this not to garner sympathy or admiration but to make this point: there is life after vision loss. Vision loss does sometimes shrink into the background. Sometimes wondering if you will ever get through a day without hacking up a lung or pondering where the hey the answer to question six is in the handouts really does take precedence.

And with that reassurance – there really is life after vision loss! – I want to move on.

Lin sends me stuff. I know the Facebook group has talked about the topic of blue light to death, but let’s quickly do a review of the article she sent me.

The article is Can Phones Make You Go Blind? In my short time on Earth we have gone from heavy, Bakelite monstrosities with little operators who hated kids living inside of them (I swear. I had a bad experience when I was about three. The little operator in the phone yelled at me to stop playing with the phone and behave myself. It was traumatizing!) to little, pocket-sized things (on which kids play all day. Go figure.) These little, pocket-sized things emit blue light that destroys retinas. The only way the old, black phones of my early childhood could have blinded you was if someone hit you over the head with one. I guess this is progress.

Anyway, it seems blue light will cause the chemical retinal (that is “retin- all” for pronunciation) to morph into something toxic. It all has to do with oxygenation and reactive oxygen species (ROS). ROSs sort of run amok damaging other cells. Ever heard the term free radical? It is all related.

Bottom line is, we need oxygen to be used in the chemical processes of life. Cannot cut that out of the equation. Also, in this technology-crazy world, screens that emit blue light pretty much rule. I will give up my device when you pry it out of my cold, dead hand. Besides, technology makes vision loss tolerable for many of us.

The answer appears to be putting “shades” on all of your devices. Blue light filters come in a variety of sizes. Most of them just mold to your screens. No muss and no fuss.

Amazon has a selection of blue light filters available. A lot of them cost in excess of $40. Potentially a little expensive.

There is another option, however. Amber lenses can do pretty much the same thing. Sunglasses with amber lenses block blue light and can be worn while you look at any screen. One purchase rather than several. Another benefit of wearing amber lenses and blocking blue light is, according to the research, better sleep.

Get shades for your screens or you wear shades yourself. Either way, it is best to avoid that pretty, blue light.

Lin/Linda: As with so many topics in the field, since I gave Sue the article she’s written about, this article was released: No, Blue Light From Your Smartphone Is Not Blinding You. This article is from the American Academy of Ophthalmology (AAO), and it says, “Blue light from electronic screens is not making you blind. A recently released study has been creating both concern in the public and alarmist headlines from news outlets worldwide. But experts are cautioning that the news reports are leaping to unfounded conclusions about the potential effects of blue light on the eye.”

Written August 28th, 2018

Next: coming soon!

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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

From the Top of the Pile

Greetings. Another day gone, but I am not sure where. After doing some work-work and yoga and a puppy walk and other assorted nonsense, I decided some of the piles in my home “office” – and believe me, I use the term loosely – had reached critical mass. What do I have in this mess, exactly?

Well, it appears generic drugs for wet AMD are coming our way. Or maybe they are “look alike,” drugs but that term has a bad connotation. The article says “biosimilar” so maybe we can go with that.

Whatever term you use, the Indians are coming up with some medications that pretty much do the same job as some anti-VEGF drugs being manufactured here and in Europe. The one the Medscape article highlights is called Razumab and it is a stand-in for ranibizumab.

The article goes on to explain biosimilar drugs are designed to replicate the molecular structure of existing biologics. Like generics, they cost much less…hmmmm. I don’t think I have to guess what big pharma thinks about that!

As might be anticipated, these biosimilars are not yet available in the States. The FDA has not yet approved any biosimilar for ophthalmic use but that does not mean it won’t happen. The Wiki people have a current list of 11 biosimilars already approved.

As of the date of the article, they were having a few problems with manufacturing consistency from batch to batch. In other words, not yet ready for primetime. However, stay tuned.

We did a cursory look at the Retina Specialist Pipeline Update several pages ago. Looking at all of the potential new treatment for wet AMD, I kept seeing the term “novel antibody.” I just did a search and did not get far on that term. My best guess is they are manufacturing new antibodies for specific purposes.

Anyone want to explain “novel antibody” in one and two syllable words, I would like to hear from you.

And here is an article of everyday practicality from WebRN. The title of the article is Macular Degeneration Aids for Grooming. The article suggests a lighted make-up mirror for both sexes and electric rather than blade razors. The better to not cut your own throat, my dears. Shampoo should be in pump bottles so you are not fumbling with the cap and/or spilling slippery shampoo in the shower or on the bathroom floor. You can also get body lotion in pump bottles. Same concept.

Although the WebRN article does not say so, a system to distinguish your shampoo from your lotion is also a good idea. For example, some people put one rubber band around one container and two around the other. Or, pick products with distinctive scents. Strawberry shampoo and lemon lotion, for example. Yes, there is a risk of ending up smelling like a fruit salad but that is better than “washing” your hair with body lotion!

So, my one pile is a little smaller now. There is so much good stuff out there! We’ll just keep looking at it for you. And if you have any topics you want to be covered, let us know. Otherwise, you might just keep getting what floats to the top of the pile!

Written August 19, 2018

Next: Life is Not Fair

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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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Mailbox or Child?

I spent most of yesterday afternoon trying to be assertive, not aggressive. Fighting the good fight for my rights. Do you ever just get sick and tired of holding people accountable? Why can’t people do things right? Or at least do what they say they will do?

My CCTV that was in the shop for the second time in a month was supposed to have a 24-hour turnaround time. They received it Monday and sent it Friday…after I called and complained.

Then there was some sort of snafu, and I did not get picked up to come home after exercise class Thursday. There is no after hours, emergency number for the transit company. Our home phone was out-of-order, and for a while, I was up the creek without a paddle.

I was on the phone with the county commissioner Friday. Since I am seen by the transit company as not having any power, I borrowed some power from the county. Should get the job done.

All of which is almost enough hassle to make me just “forget” I am visibly impaired and go back to normal life. Like driving myself for example.

It is ALMOST enough. Why? Because if I were to injure or kill anyone when driving, a lot more people than me would be inconvenienced.

Lin said several of the Facebook group members are driving. She urged people to take a good look at their vision – and I would say also a good look at their consciences – and decide whether they should actually be driving. Lin suggested a little “self-test “ she thought up. [Lin/Linda: details on that below.]

I have a few additions to that. These are some questions I thought of when on the “short bus” and then later walking the puppygirls.

Do you actually know what you are looking at? Because I don’t! Many times I can see there is something there, but I have no clue what it is. Suppose it is a mailbox, but I think it is a child standing on the curb. Do I stop and try to let the mailbox cross? (New old joke: why did the mailbox cross the road? Uh….sorry.) How about the other way around? What if that “mailbox” suddenly darts in front of me? Am I prepared? Probably not. I was thinking “mailbox” not “child.”

Can you see things that are not moving? Several times I have not seen flagmen. They were just standing there in my blind spot. Movement catches my eye, but stillness does not.

This week the creek and the river decided to get “up close and personal” in several neighborhoods. (Just missed a serious flood, and thanks for asking). There are signs all over the place. I have to be right on top of them to read them. It takes me a few seconds to actually decipher what it says. And that is walking! If I were driving the speed limit, I could either come to a dead stop and actually read the sign…or drive into the river.

The moral of that last question was this: the familiar changes. Anticipating what was does not always prepare us for what is.

And those are my questions for those who are driving visually impaired. Me? I will continue to fight the good fight with the (fill in the blank) transit company. Being on the side of the angels is preferable to becoming one.

Written July 27th, 2018

Lin/Linda:  my self-test:

  •  While parked, focus on something in front of you. Close one eye. Is everything still there in your visual field? Close the other eye. All OK?
  • While parked, turn to the left & focus on something in your visual field. Close one eye. All OK? Close the other eye. All OK?
  • While parked, turn to the right & focus on something in your visual field. Close one eye. All OK? Close the other eye. All OK?
  • Can you see the controls on your dash? With lessened contract sensitivity, many of you cannot.
  • Also, can you tell when a traffic light changes colors? My Dad who had geographic atrophy could not. He took my mother with him so she could tell him. However, she developed Alzheimer’s and eventually could not do that. He continued to drive. I was 700 miles away or I would have stopped it. He said,”I only drive locally.” Locally was on roads where there were narrow roads with people walking and on bikes. I KNOW he could not see many of them.
  • Can you see the lines on the road?

Next: Commit!

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Commit!

The word for this week appears to be commitment.

First of all, I want to thank all of you for the birthday greetings. Whenever I hear from you people and realize how many people are actually being affected by Lin’s and my efforts here, it makes me proud, humble (moi?) and more committed to keep going until we have cures for this cursed condition. Thanks again.

I also ran into the concept of commitment while reading our assigned chapter for our “free” DBT course. The topic was how to gain a commitment to working in therapy. There is a whole body of research indicating people who express commitment to a task follow through better than those who do not.

Reading that, I realized I make commitments – private and public – all the time. My goals tonight are to review my lesson for class tomorrow and proof a report. My goal for last weekend was to shampoo the carpet. Once I shared that with you people – even if I could have lied to you and never pushed a stick of furniture out-of-the-way, at all – I felt an obligation to honor my word, to honor my commitment. The carpet got done.

Looking for information on commitment, I did find one thing interesting. It was an article by Bruce Rogow entitled The Power of Commitment and Pursuing Your Dreams. Regrow quotes W.H. Murray:

Whatever you can do or dream you can begin it. Boldness has genius, power and magic in it.

Cool quote. Rogow goes on to say, in order to accomplish our goal, we must choose to commit to them. We must pursue relentless action towards our goals.

Rogow then made the statement that interested me the most: expect and have faith you will get help along the way. Intriguing. I don’t know why it would happen, but I know it does. People help me accomplish my goals all of the time. Somehow I get rides. Somehow I get the equipment I need. Somehow we have gotten readers. It is almost like “Field of Dreams.” Build it and they will come.

Like I said, I have no idea why. Maybe it is because attitudes are contagious and people like positive people. Maybe it is because we all have a little Sancho Panza in us, and we want to see the cock-eyed dreamers, Don Quixote’s of the world, triumph. Maybe we all like to cheer for the plucky underdog. Whatever the reason, commit to a goal, pursue it relentlessly and people will come out to help and cheer you along.

Why am I preaching a “sermon” on commitment in an AMD blog? Commitment to a goal is a great source of motivation. Most people, if they say they will, especially publically, by damn they WILL. We can use commitment to move us along to goals. We can use it to help us keep fighting. publically promise to use assistive technology, to go out even when it is easier to stay in, to keep involved and help the researchers find a cure and someone will help you. The next thing you know, your goals will be accomplished.

And to round things out, Rogow had one more thing to do: show sincere gratitude for the help you received…THANK YOU! Thank you for backing our commitment. With your support, our goals can be reached.

Written July 17th, 2018

Next: A Pretty Good Monday

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My New Luggage

Hi. Waiting for transportation. What else is new?

I sent Lin a photo of my ‘luggage’ today. This is a joke. I am taking two rolling crates to work. The loaner CCTV has two parts. It has a base and it has a monitor. It is HUGE.

Yes, I am glad I have it. Practicing gratitude and mentally comparing what could be my next month without a CCTV to what it will be with the loaner machine. This is better.

DBT says clients are doing the best they can, but they can do better. Right now I am doing the best I can. Making due with this behemoth of a CCTV. However, it is possible I could do better. I am on the trail of another option. Someone said there are loaners through the library.  If I can get one of those for home and have this one for the office, I will have it made in the shade!

Stay tuned for the next update…and try your local library for equipment loans. They might be able to help.

Later in the evening:

I just sent Lin a picture of the fantastic loaner I got from the library! It is a Freedom Scientific machine and it is very nice. It is a Topaz. When I looked it up on the website I discovered it is  $3400 machine.

And I got it on my library card.

OK. So I also made a donation out of gratitude. Nowhere near the cost of the machine.

When I went in and asked, they had to dig it out from behind some shelving. There were two of them and I took the one closest to me. The better to get it out, my dear.

The library people said they had never used them. Did not know how to use them. They were just taking up space. The solution to my problem gathering dust in a corner.

And how did I get it? I asked.

Having this second CCTV means I can have one at home and one at the office. I will be able to do minimal lugging. I won’t be totally stressed wondering when my CCTV is coming back.

I am thrilled. And all I did was ask.

What else is happening? Well, Lin shared a podcast with me. The name of it is Life After Sight Loss. The narrator – perky little devil! – is a guy named Derek Daniel.

Now I really did not have time to listen to much. I was getting ready for work. There are many podcasts on a variety of low vision/no vision subjects that are included on the site. The site seems to be one you might want to check out.

According to his bio Daniel has been totally blind for some time.  He has Leber Hereditary Optic Neuropathy. (Gene therapy for LHON, by the way, is looking very promising). Daniel appears to have radically accepted his blindness and to have taken part in many different trainings as well as using many technological supports. In other words, he has paid his dues and probably knows what he is talking about.

You might want to check out lifeaftersightloss.com and see what you think. And if you have a CCTV on the blink, check out the public library. It is amazing what you might check out on a library card!

Written June 13th, 2018

Next: Glad They’re On Our Side

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Forewarned is Forearmed

Back on my stride again. This is my third day at the counseling center so I am in my groove for a few days.

Making plans for Monday and Tuesday. There is a lot to do around the house. If it weren’t housework, I might want to do it!

One of the plans I have for Monday is to accept delivery of a loaner CCTV. Blindness and Visual Services comes through again! God bless them. It might not be new. It is not portable but I can work.

My case manager and I talked about how much low vision equipment must be in storage in homes across the country, maybe even the world. It would be really great if when the equipment is not needed anymore, it would be turned in to local visual services. Knowing there was a convenient lend/lease program would have saved me aggravation.

The real message there? Help others by sharing old but still usable equipment. Turn it in to your local, low vision agency. The price of this stuff is crazy. I think that and I make a good living. For a lot of VIPs (Visually Impaired People) low vision equipment is financially way out of reach. Help!

The second part of the real message is this: don’t suffer in silence. Equipment glitch? Someone might be able to help. Keep looking until you find him.

Of course, one of the reasons people don’t need vision equipment is…ummmm, death. I was looking at some of the articles on AMD on nature.com. There was about 10% of them I actually understood. And that was the titles! Lots of really smart and accomplished people are working on our problem.

Be that as it may, some people in Melbourne (hey, mates!) ran some stats on AMD and mortality. Unfortunately, they discovered we die sooner than those with normal vision. Wet AMD is associated with death from cardiovascular problems and advanced dry AMD is associated with death from tobacco-related cancers.

These are not happy thoughts but I would say forewarned is forearmed. In other words, I have never smoked, and I am not planning on starting. If you have geographic atrophy and smoke, try to quit.

You with wet AMD should recognize you are candidates for cardiovascular disease. Do what is necessary to lower your risk. You know the drill.

The researchers cited by nature.com not only have us dying faster, they also have us potentially losing cognitive skill more quickly. Will the good news never end?

The theory is cognitive enhancing activities are much harder for people who cannot see. We as a group were found to engage in four or five fewer, cognitive enhancing activities per month as compared to sighted seniors. The most affected area was physical activities followed by hobbies and home maintenance. We also came out behind in novel information processing.

While they are not saying it is an absolute certainty we will have a greater cognitive decline, I would not suggest you take any chances. Find engaging activities you can do. Get into visual rehabilitation.

You can affect your own future. Get going!

Written June 10th, 2018

Next: Go Out and Play!

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Go Out and Play!

I do not do well with downtime. Consequently, today saw me doing a little work for work, a bit of simple cooking (gasp! I also ate my own cooking and lived to tell about it. Go figure.?), some digging for things to give to the yard sale, laundry, dishes…..get me out of here!!!!

I need a sunny day to get out and DO something. Last year – or was it the year before? No matter – I wrote some about all the really fun things you can still do with visual impairment. My top two loves are dancing and yoga. I also kayak, swim, walk the dogs and bike in summer.

Three years after losing my first eye and 2 ½ years after losing central vision in my second eye, I can still do the things I love. Go into this visually impaired thing in good shape and there is no reason you cannot maintain an active lifestyle. Go into it in bad shape and life changes with visual impairment may give you time to get into better shape. It is up to you.

Not only do you get in better shape, you also keep an active mind and make all sorts of friends, or at least very positive contacts with acquaintances. Case in point: my yogini is having an evening session in the park in a few days. Since my transportation turns back into a pumpkin in the evening, I told her I would be there if I could find a way home. A woman I know only slightly spoke up and volunteered to take me home. Consequently, I am doing outside yoga!!! ?

Don’t like yoga? Two left feet when you dance? (But remember how Pacino tangoes in Scent of a Woman? That was one, ‘blind’ man who could dance.) Would you like to row a boat? That is backward anyway. Or how about bowling?

According to VisionAware there are enough blind and visually handicapped bowlers, they have their own national organization, the American Blind Bowlers Association. They bowl either using a sighted guide or a guide rail. The guide rail is the only adaption to the lane. There are no bumpers like you may have used when you were small. Balls may be bright colors to add contrast. Callers let you know about that nasty split you have to pick up for the spare.

How about golf? The United States Blind Golfers Association has a catchy motto: “You don’t have to see it to tee it”. Cute, huh? Sighted coaches are used to help the visually impaired golfer line up his shots. There are different categories depending upon the degree of sight loss.

Not ready for the tournament circuit? How about mini golf? Mark Riccobono wrote a nice article about introducing visually impaired children to the sport. He has several good pointers that should apply to everyone.

Other suggestions? Horseback riding. How about hula hooping? I have a weighed one – hula hoop, not a horse – that stays up much more easily than those we played with as kids.

To summarize, if you are used to an active lifestyle, there is no reason you cannot continue it with a visual impairment. To quote your mother “Now go out and play!”

Written June 10th, 2018

Next: Lights Please!

HOme

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

Next: Do You Like Thai?

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DIY CCTV

Morning! Happy Saturday. I guess the day between Good Friday and Easter is nothing special; right?  [Lin/Linda: some people call it Holy Saturday or Easter Eve.]

I am practicing acceptance today. We had the puppygirls spayed yesterday and they really aren’t supposed to climb stairs. My husband took that to heart and tried to carry the 47 lb. Maggie Monster up the steps. On ruptured L4 and L5 lumbar discs that was. Consequently he is flat on his back in bed and I am at home all day. No ride.

Also practicing my comparison skill. Is being stuck at home but still able to motor around better than being in bed with back pain? I would say so.

Of course, I may just refrain from telling him Maggie has been following me while I do chores all morning. She has climbed up and down stairs on her own about a dozen times so far today!

I went for lunch with coworkers yesterday. We had to cross the road to get there. Did I get busted on or did I get busted on?!?! I had offers to be led by the hand and everything else you can think of!

Thought on that? I am really glad people are comfortable with my visual impairment. Being teased by friends essentially means they have accepted the situation, too. And guess what? It is okay.

And speaking of friends, Lin has been sending me ‘stuff’. The last one she sent me was Sam of The Blind Life (why do I remember that as called The Blind Spot? Delusional again!) reviewing the Modular Hose system. [He did call his YouTube channel The Blind Spot until someone told him they had that name first, now it’s The Blind Life.  Not delusional about this. ::grin::]

Apparently Sam has been trying to find a way to turn his iPad into a CCTV. Sam used a Lego container and a bag of beans for his do-it-yourself CCTV. Obviously he has not seen our page on the Justand!

Anyway, Sam is impressed with the Modular Hose because of its versatility. I have to admit, the Modular Hose did get into a lot of shapes and positions that the Justand, a rigid system, cannot.

The site is ModularHose.com. The page looks as if their product is used for industry but if you go down a bit, there is a link to assistive technology.

When you use that link you will see wheelchairs with the Modular Hose system attached. It appears they offer a large variety of option for the severely physically disabled, including things like head switches.

We probably would want the tablets and devices section. The cheapest set up I saw was $48. The one Sam was using looked to be $83 although when I went to the kits section I did find something similar for the price Sam quoted, $70. Since this thing is modular, you might be able to construct something that works for you from the stuff sold in the parts and supplies and arms sections. Arms are sold in segments and you might be able to save some money by scrimping on arm length.

So, in conclusion, I have never used this thing and I make no recommendations as a result. However, Sam was impressed by it’s functionality and versatility. It looks as if you could cobble together something that would work for less cash than the Justand V2 which I found advertised for $99. It also looks like it weighs less which is important if you have to haul it around.

That is what I have. Who wants to buy a Modular Hose system and report back? We are taking volunteers!

Written March 31st, 2018 Continue reading “DIY CCTV”

Furious and Proud

Morning! Odds and ends this morning. First off: I have done a lot of contemplating ‘puppicide’ as of late. Last week they got hold of my good yoga mat. They chewed the rolled end so when I unrolled it it was this ‘lovely’ pattern of indentations regularly down the mat. Both sides, of course. Alternating. Replacement: $80.

Yesterday they got into my purse and got out the charger for my handheld magnifying reader. I found a company that will replace it for $60 plus tax, shipping and handling of course. I am going to try to see if I can get the same type from an electronic store or Eschenbach. Hopefully for less? Wishful thinker here.

Take away message for you? Replacement parts are expensive. Lose or destroy your charger and you are in for a replacement fee of the better part of a C note. Be careful!

I serve as a dire warning on the first point of this page. Hopefully I can be seen as a shining example (Paraphrasing Catherine Aird) on this next one.

I took my CCTV to a seminar on Friday. I set up in front and to the side. The better to see and still not block your view, my dear.

Was I a little extra work for maintenance? Yep. They needed to get me an extension cord and tape it down. But on the plus side, I was an example of a visually impaired person FUNCTIONING and in the world. I demonstrated my ‘toys’ to my neighbor at the table (and I suspect also to the people behind me. I am a shameless eavesdropper and I suspect most other people are, too).

I also gave my mymacularjournal.com card to a man who has a friend with dry AMD. Once again, the way this man talked, his friend had been told nothing, as in not a bloomin’ thing, about how to live with visual impairment. Arrrrrgggggghhhhhh!!!!!!!

Encounters like that make me both furious and proud. Furious because we – as the AMD population – are being ignored by the system. Proud because we are reaching out and educating people every day.

Here is the pep talk: get out there. Talk about our condition. Talk about your ‘toys’. Make it known there are VIPs in your community and these people are functional members of society. You may not be speaking to other VIPs but someone may know someone who knows someone and you might change a life. I hope I was the catalyst to change this man’s friend’s life last Friday.  [VIP=Visually Impaired Person]

And while we are on the topic of changing lives, a big thank you goes out to Lois Pope. Apparently Lois is a nice lady with a LOT of money. She donated the biggest cash gift ever given to Bascom Palmer hospital in Miami.

What? Got you curious, huh? Alright. That figure was $12 million.

Lois made the gift in honor of her late mother who had AMD. All of the money is to be used to build a new research center that will specialize in macular degeneration and other retinal diseases.

Once again it appears our time has come. People like Lois, the researchers at Bascom Palmer and researchers all over the world are working to fix our problem and make the lives of AMD folks better. Get out there and do the same. Each of us can be an agent for good.

Written March 18th, 2018

Next: Children Cannot See!

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Things Are Getting Better

Just about time to get ready for bed but I thought I would start this while I was thinking about it. Point one: Sunday I went in and activated the educator’s discount on my phone plan. I kept forgetting about it before, which was stupid. I will save 15%, which will be about $27 a month.

Lots of companies and professions have discounts for a variety of things. If your employer or former employer does not have discount arrangements, consider joining AARP or another such organization. AARP is about $12 a year, for which you get a list, as long as your arm, of business offering discounts. For example, Cirque du Soleil tickets in Vegas go for about a hundred dollars, (or much more!) a piece. Buy two with AARP’s 20% discount and you have more than recovered twice your membership cost. (And, yes, they have phone plans, but I got all excited when I saw Cirque.)

That is the memo from my thrifty side. Now we can hear from my practical side.

My practical side says invest in power strips. We have a substitute cleaning person at the office. She unplugs my extension cord every time she cleans! Ahhhhhh!!!!!! That means I have to crawl around the furniture trying to get everything reconnected so I can plug in my CCTV. I will assume you have tried to plug something into an outlet in a dark corner before. With limited vision it is an exercise in frustration.

The answer is power strips! Plug those babies in one time. After that you can pick them up out of those dark, dreary corners and hold them in the light so you can see what you are doing. A thousand times easier to plug in my CCTV.

What else? Well, have you seen the research suggesting baby boomers have less AMD than their parents? And those who are coming after us – we who were born between 1946 and 1964 – seem to have even less.

Of course, it is sort of hard to prove by me with GA (geographic atrophy) in both eyes but supposedly the risk of developing AMD has been decreasing by 60% every generation. Seriously. Cross my heart and hope to die. Science Daily says they got the information from the JAMA Research Journals. JAMA apparently got it from Beaver Dam. [Lin/Linda here: The Beaver Dam Eye Study is a often-quoted research project funded by the National Eye Institute.  The purpose of the study was “to collect information on the prevalence and incidence of age-related cataract, macular degeneration and diabetic retinopathy, which are all common eye diseases causing loss of vision in an aging population.” ]

This does not mean there are fewer of us. There are many more of us. This is because our generation is so freakin’ BiG a smaller portion of us still gives us the bigger numbers. Got it?

There are articles on the web suggesting this is not just happening in the States. The proportions are going down in Europe and in Australia, too.

Why is right now just speculation. The folks who wrote the JAMA article suggested we just may be healthier. Rates of cardiovascular disease and dementia are also down.

Same underlying factors? Different ones? No clue at this point. However, the take home message is this: things are getting better. Keep exercising your good health habits. Encourage your kids in good health habits. We may have no clue what we are doing, but keep doing it!?

Written March 10th, 2018 Continue reading “Things Are Getting Better”

My Advice to Those Newly Diagnosed

Hi! Greetings from Chaos. I need to just sit and chill for a while and since I am not good at doing nothing, I guess I can write a page.

Crazy time! I not only skied Wednesday, I also went to a preschooler’s birthday party on Saturday and a gospel concert today. (Passing on a little bit of good stuff: go onto YouTube and search Sister Rosetta Tharpe “Didn’t It Rain”. The gospel roots of rock and roll. Learned something today!)

Lin said a topic the Facebook group is going to discuss is how to handle “all that bad news” of vision loss. I thought how I would approach that and did some research, but decided to approach the topic from my own perspective first. Then from the perspective of the professionals. And get ready, because I am going to be the naysayer.

What am I talking about? Oh, just what I have been saying for a while now. Specifically this: vision loss is no picnic but it is not as bad as you think it will be. What you are listening to is your fear talking. Stop listening to it!

As I have said before, I was initially told I was going ‘blind’, but I am not. I am losing my central vision, not all my sight. I may be ‘legally blind’ but I do not live in darkness. Huge difference!

The second thing about dry AMD is it is slow. It has been two years, guys, and I am still functional. Remember the commercials about waiting for the ketchup to leave the bottle? That is what it is like. If you have dry AMD, you will not be blind by next Tuesday.  [Lin/Linda here: dry AMD can turn to wet AMD in 10% of those with the disease.  Please make sure you check your vision regularly with an Amsler Grid or another way as recommended by your retinal specialist.]

Bringing me to my third point. A slow-go process like dry AMD leaves you plenty of time to adapt. You will not have to learn how to function as a ‘blind’ person overnight. There will be weeks and months and – yes – years until you will be significantly impaired. There is more than enough time to get yourself adjusted.

What have I given up? Driving. That is pretty much it. Oh, and a lot of reading. I used to read mystery novels. Now I listen to them. A couple of pages to be read can be read with the help of a magnifier.

Don’t panic

What would my advice be to those with a new diagnosis? Don’t panic would be the first thing. You will grieve, of course, but don’t panic. The life changes may be not be as significant as you think.

Take care of your physical health

Beyond that? Advice I would give everyone everywhere. Take care of your physical health. I stay sane by being fit and strong enough to be active in life. I can walk down the road to catch a ride on the street corner if need be. I can carry all my own ‘luggage’ for the day. CCTV, briefcase, lunch, gym clothes all go out with me in the morning. And who is lugging all this stuff? Yep, me. All by my lonesome.

Foster social relationships

I have the best group of people supporting me that you have ever met. People want to keep me involved; bless them. People actually text me and ask if I am ‘good’. They invite me to go along. Get out there. Foster the right attitude. You will meet the best people in the world, too.

Don’t be afraid to do things differently

And lastly, don’t be afraid to do things differently. Learn how to use a CCTV. Apply for BARD and listen to you books. Don’t be so pig-headed and ask for help, for crying out loud!  Lots of problems happen not because of low vision but because we refuse to try a different way.

There it is. Me telling you it is not all the bad news you think it is. Believe me. Revile me. Put me on a pedestal as someone who does amazing things you could never do. But in another few years, when you are functioning just fine as a VIP?  Remember who told you it is going to be okay.

Written 2/21/2018 Continue reading “My Advice to Those Newly Diagnosed”

Shedding Some Light

I am trying to balance out my weekend a bit. So far it has been a lot of fun and games. Of course, there is nothing wrong with fun and games…just occasionally I have to remember I am a grown-up!?

Laundry in the machine. Living room swept. Time for a page.

As I said last page, the Facebook group will be discussing coping with “all that bad news”. Now, I was not immune to the sinking feeling that comes with thinking you are going blind.

I spent an afternoon imaging the worst “I’m blind” scenario I could imagine. It was too depressing so I traded that scenario in for a better one. That one suited me better. That one had the aforementioned fun and games.

How did I do it? Stubborn as a Missouri mule and a born optimistic. I had also called for “help!” I had not read the WebMD article Coping with Vision Loss but I ended up doing much of what that article suggested.

For example, Lin and I were both researching in earnest. Each of us is a born student. Have a problem? Research the hell out of it! Things you know something about are a lot less scary than the unknown. I would suspect every one of you is a master of the horror story when it comes to vision loss. Shedding some light on the condition will reduce the horror.

WebMD suggests professional, psychological help. Uh, I am professional, psychological help. And when I was not my own, best therapist, about half of my friends are in the biz. Nothing formal, but, honey, I can talk!

I don’t think I have to tell you to allow yourself to grieve your loss. You are doing that. But remember, grief waxes and wanes and when you are not actively grieving you need to get moving. Use what energy you have to develop coping strategies.

We have talked about ‘toys’ and trainings for low vision. There are all sorts of options available. The WebMD article has a list not that different from what we have talked about. In bigger cities you might be able to get into lend/lease programs so you can try out a few, equipment options. If you need financial help, talk to government or service organizations. We have mentioned program such as state vision services as well as the Lions Club International and Center for Independent Living just to mention three.

That is pretty much what WebMD had to say. I found an article discussing a formal study of those losing their sight. I have to look at it more carefully and I will get back to you. Right now the dryer cycle is finished. Gotta advance the laundry. For now, hope this helped!

Written 2/19/2018 Continue reading “Shedding Some Light”

Believe in Fairies

One more time I am waiting for a ride to work. Yippee. Not! In case you have not figured it out, this is the part I hate most about losing my central vision.

A notice came in the snail mail. The Library for the Blind and Physically Handicapped in Philly is moving. They are going to 1500 Spring Garden Street. If you use their services, be aware.

I always love it when I get print notices from agencies for the blind. What if you are totally blind?

Do you have to put every piece of junk mail under a reader just so you don’t throw out anything important?  That could become a full-time job!

What else? Well, on a positive note,  I am going skiing tomorrow evening! Once again persistence and a positive attitude pay off.  I contacted a local, outdoor activity group and my sob story finally worked! I had been told to lie by omission, but I don’t. I told her I am a healthy, active 64 year old with a visual impairment. I cannot drive and I need a ride. You will not have to babysit me.

Of course I know nothing about my Good Samaritan except what he told me. Calculated risk. He had my number and he gave me the name of the girl at the outdoor activity group. I assume she is not pimping for some perverted sort. She sounded very sweet.

Just the same, Lin has the name and number of the guy. If I disappear, it was nice “chatting” with you all these months. Lin will give the info to the authorities .

If this works out, maybe I will see if anyone in their group is going rafting this spring!  Times like this I feel as if I am truly getting my life back. It is exciting to be getting back to being me!

Just takes a boatload of dogged persistence and a positive attitude. I don’t want to go all New Age or spiritual on you, but I feel the ‘vibes’ you send out really do decide what you get back. I looked up ‘expect good things’ and I got everything from Bible verses to talk about vortexes  and power places. Whoa. I mean, I loved Sedona – great, red rocks – but I am not sure I am really into sitting at a vortex to channel the energy. Just saying.

I have no idea who Brian Tracy is – he could very well be sitting on a vortex in Sedona for all I know – but he has a nice quote on a poster.  The quote is this: “You are a living magnet. What you attract into your life is in harmony with your dominant thoughts.”

I really like that quote. You could probably find its philosophical siblings in the religious literature of whatever faith, but Tracy says it in plain English. Positive attracts positive. And the other way around.

Last thing before bed… in answer to my Mardi Gras greeting to my contact at Wills (and a laissez le bon temps rouler to you all as well!) I got told the preparation for the stem cell research is moving along but still not ready to launch.  Basically positive news. I will take it.

So, to quote J.M. Barrie “ I do believe in fairies! I do! I do!”

Believe in fairies. Think positive thoughts. Create your own, little miracles. It is within your power. Vortexes or no!

Written February 14th, 2018 Continue reading “Believe in Fairies”

Our Own Month

It is February! I know because everything is decorated in red and pink and white hearts in honor of St. Valentine and love, not necessarily in that order.

And speaking of love, I want to throw out a big thank you for philia, brotherly love. I am always amazed and grateful at how people look out for me. Time and time again people make sure I am taken care of. When my Zumba instructor found out I had a 40 minute wait for my ride, she had me cancel and hustled me into her car. At the school party, my boss was asking the people I was sitting with if I had a ride home. If there had been any question, she would have driven me home herself or taken it upon herself to find someone who would get me there. I am blessed.

Some of you think I live in a happy fairy tale. I have had people comment the people in their communities would never do such things for them. I disagree. Ask. I believe you will be pleasantly surprised.

Another thing about February? It is Macular Degeneration month. How about that? We have our own month!

Of course, now that it has been given to us, we have to figure out what to do with it. It is not like you can just go and return a month. And if they don’t see us using it, they will think we don’t like it. That could get awkward!

Healio reports eye care organizations are encouraging people to go for regular eye exams with ophthalmologists. Ophthalmologists and not optometrists, the guys that fit you for glasses.

If you have a good optometrist and he sees something wonky, he may refer you on, but it does not always happen that way. Go see the physician who specializes in eyes, the ophthalmologist.

Medscape also said  organizations are educating people on the fact – and this is true! – AMD is not a lost cause and NOT sure blindness any more. We are moving ahead so rapidly it could make your head spin!

So, yeah, what they said, but we should have some special way of putting our own mark on the month; don’t ya think? What can we do to contribute Age-Related Macular Degeneration Month?

One thing we have that just about all eye care professionals and a lot of organization types don’t have is, well, Age-Related Macular Degeneration! …or at least I hope they don’t. I don’t think I would want my retinologist analyzing my OCT scans when he could not see them!

But I digress again. My point is we have stories. We have skills and knowledge. We are survivors. We each have been there. Done that. Got the t-shirt. Who are more perfect to tell newbies about living with AMD than we are?

Lin adds new Facebook members almost daily. Small wonder. Medscape also reported blindness and low vision rates are expected to double in the next 30 years.  Good grief.

I would propose we share our stories and knowledge with others. An insider’s perspective on AMD. Maybe adopt a ‘little sister’ (or bro).  Pass on the philia. After all, it is the month for love.

[Lin/Linda here: in the Facebook group, I am also asking folks to write about their journeys to add to our already wonderful list of Guest Authors.  It’s easy – you write the words, I’ll edit and format them in a page or pages and publish them on the website.  I’ve also asked our members to write short statements of advice for those new to the diagnosis.  I’ll start publishing them as I get them so send me yours to add to the list.]

written Feb. 6th, 2018

Continue reading “Our Own Month”

Sue’s Toolkit – 2 Year Later – Part 1

Allow me to start this page with a statement of fact: I am not normal. I do housework under duress. If God wanted me to cook, he would not have invented Chinese buffets and frozen lasagna.

In short, if you are looking for tips and equipment that will make cleaning and cooking easier for someone with a visual impairment, this page is not the place.

That place IS MaxiAids. They have a fantastic collection of adapted materials. Many of their products are designed to help with domestic drudgery…ah, chores. If you are in need of those sorts of products, MaxiAids is wonderful.

Oh, and by the way, none of these are advertisement or recommendations. All of this stuff I either use or, in the case of the MaxiAid stuff, had pointed out to me as a valuable resource. What fits my needs may not fit yours.

Also, if you want to buy any of those types of products, use them and write reviews, welcome guest authors! It just ain’t going to be me doing it.

[Lin/Linda here with a very red face! After all Sue’s fuss about my ‘grading’ her page, she caught me!  I’d forgotten to publish THIS page first.  Whoops!  There are a lot of things I could blame it on but I’ll spare you all.  Sorry, Sue.  You can fire me anytime.  ::grin::]

What I am going to do is do a brief rundown (apparently better than a run-over) of what I have used that has stood the test of time. What technology am I still using two years later?

Let us start with what I just ordered: mini monoculars. Yes, I have had several. The problems with them are 1) they don’t survive water – especially salt water – well and 2) they are not built to be chew toys. The last one I had got chewed to bits. Puppygirls strike again. The one immediately before that fell off a paddle board in the Bahamas. Several times in fact.

When not being gnawed or submerged, the mini monoculars are great for surveying your surroundings from a distance. They are good for street signs and identifying what is running across the field towards you. Yikes!

I bought a larger monocular. I also bought a small pair of binoculars. They were both too heavy to wear around my neck all the time.

What I would recommend more than anything is an iPad. My iPad may be my prize possession. With the zoom feature I can do scads of things! It is onto my iPad that I have downloaded all sorts of free apps including apps for major television stations.

I am not a big television fan. If it doesn’t have NCIS somewhere in the title, I probably don’t watch it. However, when I do want to watch a program, I can often stream an episode of something or other for free.

The really good thing about watching TV on the iPad is your ability to move the screen as close to your nose as you need to. Remember relative distance is a way to magnify. Also with the iPad you can replay a scene if you don’t quite get what happened.

I have talked about all sorts of apps that are on my iPad. Honestly, I may use the KNFB Reader occasionally and NaturalReader occasionally but not all that often. My eyes are still strong enough I can use the iPad camera with a free magnifying app to read menus and other short stuff. [click here for a good article about the features of the iPhone and iPad that make them so good for those with low vision.]

If I want to read a book, I use BARD, also an app on my iPad.  Remember you have to be declared legally blind to get BARD. If you are not legally blind you can buy e-books and zoom them. [Read more about BARD and e-books in Sue’s Page Around the World of Books.]

I am over my 500 words so I will just quickly mention two other things. The first one would be Zoom Text. If you are working on a desktop computer – or at least using a large monitor – ZoomText makes life much easier. Navigation can be a bear since half the page is off the edges, but at least you can see the half that is on the screen.

Last but not least is my CCTV. I use that nearly every day. Without it, I feel like I lost an arm. I can write checks and notes using it. I can read articles for pages. It gets used.

Once again, my CCTV was $3500. Mine was paid for because they wanted to keep me working. You may not have that opportunity. However, spare $3 or 4K? The investment, in my mind, would be worth it. [There are SO MANY CCTV products that we can’t review them at this time.  Search the Internet, ask your Low Vision Specialist or other resources.]

That is it. That is barebones what I actually use after two years being a VIP. Hope the info helps.

Oops! PS I forgot my Max TV glasses! No TV but they are great for doing classroom observations, seeing my students in class and watching movies and live theater performances.

written Jan. 31st, 2018

Next: Sue’s Toolkit – 2 Years Later – Part 2

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