Category: Tips for living with low vision

Our Neighbors in Canada

Hello, neighbor! This is a page for our Canadian friends. Or at least the first part is. I will see what kind of info I find to fill it up.

First of all, a topic near and dear to my heart: puppies! It appears the Canadian National Institute for the Blind (CNIB) is now in the guide dog business. They have started a program to train dogs and match them with appropriate folks. They are compiling a list of people who would like a dog as well as asking for puppy parents. They are looking for people in North Toronto, Markham and Newmarket as well as Halifax and Winnipeg.

Now, more power to you. I would make a good foster parent except for one small detail: I would not be able to give her up! That, and I am a soft touch. So that is two details. If you are capable of such generosity you can give up an animal for a good cause, maybe you should volunteer. They are, as I said, looking for volunteers. I, on the other hand, will demure.

CNIB runs a summer camp. It is just North of Toronto. I would love to say those of us with age-related eye diseases can go but it looks like, once again, it is for those pesky people called children. Could you please explain to me why they get all the fun?

FYI, I tried to get the people at the Penn State Summer Academy to say I could play, too. They were having none of it. Very discouraging for a 64 year old ‘kid’! I think we older folks need equal time!

Canada has the Center for Equitable Library Access. Although they work closely with CNIB CELA is not a subsidiary of CNIB. In Canada you can sign up at your public library or call 855-655-2273.

CNIB offers a Readasaurus Kit for preschoolers to get introduced to the joys of reading. Their site shows you how to make your own tactile books and gives you ideas for low vision activities for the little ones. Know any little people with visual impairment? I do and I think I will share this site with Mommy.

Another activity for the kiddos offered by CNIB is a Braille writing contest, with CASH prizes! I don’t think I know of any novels written initially in Braille but why not? Our lack of knowledge and imagination does not mean it cannot happen. Maybe it will happen in Canada.

Really being impressed by CNIB and its offerings. They have games they allow us big folks to play! They have an auditory version of Battleship and Sound Sudoku. They also have links to sites like The Able Gamers Foundation for video game play.

Like I said, impressed with what our cousins to the north have to offer. Some of it – websites for the educational materials and the games for examples – is available to everyone including non-Canadians. Be sure to check it out.

written July 23rd, 2017

Continue reading “Our Neighbors in Canada”

Around the World of Books

Once again trying to be a ‘good’ or at least productive person and I am not getting very far. Only working part time this summer I have become rather unmotivated!

I finished listening to Rick Riordan’s The Dark Prophecy. That was through BARD. Just a note here confirming BARD has books for kids (real kids and kids in old lady bodies, like me!).

Not only do they have ‘chapter books’, they also offer picture books. I just downloaded Goodnight Moon, all two minutes of it. If you can no longer read to the grandchildren, BARD can come to your rescue. You just turn the pages and provide the hugs.

I also looked at Gutenberg.org a little more closely. They have thousands of titles, all in the public domain. That means the great majority of titles is over 100 years old. If you like the classics, they are available on Gutenberg.org and can be read on your NaturalReader. [To refresh your memory about NaturalReader, go to Sue’s pages Jabbering and Whoopsie.]

Oh, and they are looking for proof readers, too. A page a day would be acceptable. Apparently there was a 20 year moratorium on the ending of copyrights and it expires this winter. Gutenberg.org expects to be inundated by proof-reading work.

If you can edit and manage to read a page or two a day, you can help get the classics from early 20th century into the hands of people who may not be able to afford books.

That is in the States….

Looking for more sources of audiobooks, it appears Bookshare would be available to our international readers, all around the globe. Bookshare requires a statement by a ‘competent authority’ that you cannot access regular text. That could be a family doctor for you without access to vision professionals. Low and middle-income country citizens – countries like India, Egypt and Guatemala – pay $5 sign up fee and $10 annual membership fee for up to 200 books a month. Jeez, and I used to think I was a voracious reader!

Now, this being an American company, most of the books are in English. If you only understand Basque, you are limited to 110 titles. Could be worse. The Bulgarian speakers get 10. Germans hit the jackpot with 4,590. It would appear you should check their holdings before paying your money. Marathi speakers get 120 options. What IS Marathi, anyway?

Just browsing here it appears the Royal National Institute for the Blind (RNIB) has something similar to BARD in their Talking Book program. You must be a U.K. resident with a disability that does not allow you to read standard print. Not sure who makes that determination but the audiobooks look as if they are free.

And they give a tutorial on canes on their site! Nothing like a little ‘trivia’ lesson. White canes are guide canes for only visually impaired. Red and white canes are for the deaf/ blind. A long cane is used to help avoid obstacles and a symbol cane is to let people know you have sight loss and really did not run into them on purpose!

Ok. Now many of us know a little more than we knew 10 minutes ago. Anything else for the good of the order? Bye!

written July 23rd, 2017

Continue reading “Around the World of Books”

Know the Terms

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

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

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

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

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

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

But I digress. What are the proper terms anyway?

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

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

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

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

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

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

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

written July 22nd, 2017

Continue reading “Know the Terms”

Rock On!

Over the past year I have developed a certain affection for Cheeseheads. Wisconsin seems to do a lot for people with visual impairment. However, I am starting to think the Beaver Dam researchers may be a bunch of killjoys!

Wisconsin? Beaver Dam? Yep. Beaver Dam is a town with between 16,000 and 17,000 people located along the Beaver Dam River and, yep, Beaver Dam Lake. I guess they ran out of catchy names. (Actually, that really DID happen in upstate New York. I got a giggle out of the fact they gave up and just started numbering lakes!)

But back to Wisconsin. The Beaver Dam study started in 1987. Since then they have regularly polled and tested the folks about all things vision. A big area of interest for them has been macular degeneration.

Lin sent me a 2004 article on how the Beaver Dam people found a correlation between sunburns in youth and macular degeneration. Problem was she sent it Friday evening. The evening before I was going to “Brigg’s”, an outdoor blues/music festival. Really???? Why now? [Lin/Linda: in all fairness, I did not know about Brigg’s until AFTER I sent Sue the article!]

To make a long story sort of short, I put on my ‘dancing shoes’, slathered on the sunscreen and went. The article said sunburn in your youth. Sixties are not youth; right? Had a great time.

I decided old rockers never die; they just go to music fests. I saw more gray ponytails – male and female – than I had ever seen in one place before in my life. Rock on!

Came home and I am looking into this sunburn and AMD stuff. After all, outside is one of my favorite places!

The article Lin sent me says people with 5 or more hours of sun exposure are more likely to have increased retinal pigment. Hats and sunglasses are associated with fewer soft drusen and RPE degeneration. 10 or more ‘severe’ sunburns in youth is more than twice as likely to be correlated with AMD later in life than two or fewer sunburns.

Something that was a relief to me was there was no correlation between time spent outdoors in winter sports and AMD. Apparently my day skiing right before I ‘lost’ my second eye had nothing to do with things. (Phew!)

The report kicks around several reasons for the sunburn/AMD correlation and finally decides more study is needed. Me, too. Khan, Shahid and Yates found a ‘suggestion’ of an association between sunburn prone skin and geographic atrophy. In 1998 the Blue Mountain Eye Study (hi, there, New South Wales!) found blue eyes can lead to AMD trouble. Sounds like the jury may still be out on sunburnt SKIN and AMD.

However, the jury has come in on sunburned eyes. The Southwest Eye Center reports photokeratitis, sunburn of the eye, can result in pterygium (a condition of the conjunctiva/cornea), cataracts and possibly cancer. AMD is listed on the page as a ‘maybe’.

Bottom line is this: wear sunglasses. Wear sunscreen. And, rock on! ?

written July 9th, 2017

Continue reading “Rock On!”

Eyes Open, Mouth Closed

TGIF! In real time, welcome to the weekend!

In the interest of fair and unbiased reporting, I am once again writing about wet AMD…..well, actually I am writing about intravitreal injections, a topic many more of us are going to be interested in very soon. Although there seem to be PLENTY of you wet folks getting the shots already. Did you know intravitreal injections are the most commonly performed medical procedure in the US? According to a 2015 Review of Ophthalmology article, Updated Guidelines for Intravitreal Injections, the numbers are twice what they are for cataract surgery. That makes sense considering people only ever have two cataract operations as opposed to perhaps 24 or more injections in a year alone. No matter the logic behind the numbers, though, that is still a lot of trips to the doctor.

Anyway, when shots first started in 2004, there was a ‘best practices’ paper written. That paper was revisited in 2014.

One thing I noticed? You chatty people should stop trying to engage the doctors and nurses in conversation! That was suggested back in 2004 and has been supported in more recent literature.

Why, you may ask. Do you remember when your parents told you not to bite (or get bit!) because the human mouth is filthy? They were right. Mouths are ridiculously germy.

Healio reported a strict ‘no talk’ policy during injections causes substantial difference. Chatty doctors had seven cases of infection due to oral pathogens. Doctors who did not talk had two. Granted, these numbers were over a total of over 47,000 injections, but do you want to be the one with a raging eye infection? (That answer should be ‘no’.)

And if you asked to have a companion for ‘moral support’ and got told no? Infection was probably the reason. Doctors can control whether they speak or not, but they have no control over people you bring with you. They are not being cruel. Leave the motor mouth in the car.

Other things in the best practices paper were equally common sense. Use adequate antibiotics and anesthesia. Monitor intraocular pressure. Wash your hands! The whole idea is to reduce discomfort and reduce infection, not necessarily in that order.

Pretty much, the lesson is: avoid infection. Make sure you have a nice, clean face and hands when you get there. Understand why you cannot have people with you. Be quiet and allow the medical staff to be silent as well. Although the paper said masks and sterile drapes are optional, if you want them, you have the right to request them.

Once again, the goal is to keep you comfortable and – more importantly! – keep you from having eye infections. Stay healthy! In the end, the responsibility is on you. Speak up about concerns. If they won’t cooperate, look for other resources. Continue reading “Eyes Open, Mouth Closed”

Timeline Part 1: Advances in Treatment & Care for People with Macular Degeneration

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

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

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

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

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

One Good Eye

Just heard from a reader who said family and friends made her feel guilty about making a ‘fuss’ when she lost sight in her first eye. After all, she was older and you need to expect these things. Also it was ‘only’ one eye. She had two; did she not? She should have been happy she had one good one! They did not think she should fear vision loss.

Good grief. Not sure what species these people are from but we humans have a pretty strong fear of vision loss. In fact WebMD published results of a survey that found vision loss is what Americans fear the most.

This is a consistent finding across varying racial and ethnic groups. We ALL fear going blind.

In fact, fear of loss of sight was the same or greater than fear of losing hearing, memory, speech or a limb. And what is so scary about loss of sight? Quality of life and loss of independence, of course. Having good vision can be seen as a key to one’s overall sense of well-being. Good vision is frequently seen as essential to overall health and daily functioning. Good vision is seen as basic to just about everything.

There are five – just five – basic fears according to Psychology Today and I can see sight loss as feeding into three of them. First is the fear of mutilation, the loss of a body part. I took a little poetic license with this one, equating loss of function with loss of the organ itself. Then there is loss of autonomy, pretty self-explanatory, and separation. Sensory loss can certainly lead to a lack of social interaction. Is it any wonder we get so upset about sight loss? It taps into three out of five primal fears!

Fear is not just for weaklings and sissies. Fear is a valuable emotion. It tells us something is wrong and we had better start paying attention. There is something that needs to be dealt with. It is not only necessary but perfectly acceptable to listen to your fears.

To address their first point, vision loss is not an inevitable part of aging. There are a number of vision changes that occur but it seems only one of the common ones is not considered a ‘disease’. This is presbyopia – literally ‘old eyes’ from the Greek – or farsightedness. Presbyopia can be fixed in one of two ways: corrective lenses or grow longer arms!?

The Washington Post article entitled Vision loss is a part of old age but it’s not inevitable then goes on to list the rest of the causes of vision loss in older folks: cataracts, glaucoma and retinal disease. Please note the word ‘disease’.

Disease is not a normal part of anything and yes, you get concerned, and, yes, you see a doctor.

Our reader still did have one eye left, but would you like a good obsession? Try wondering when you will lose function in the second eye! That should afford you untold hours of uninterrupted worry! Somewhere I read waiting for the second eye to go is one of the most stressful things about progressive eye disease. Don’t know where, though. I read quite a bit on the subject.

Take away points: sight loss is not inevitable. Most causes of sight loss in older folks are considered disease and there are treatments for most of them. Don’t let anyone but a retina expert tell you there is nothing wrong. Most importantly, although I did not say this earlier in this page, if there is a sudden onset of symptoms, act quickly and get to the doctor.

Continue reading “One Good Eye”

Keep Your Heads

Let’s face it folks. They see us coming a mile away! Here we are: older, maybe a little too trusting and slightly desperate. We are very often good pickins for the quacks and scam artists of the world.

Last month, May 2017 in real time, Modern Retina ran a piece on Medicare fraud as it relates to eye care. Unscrupulous doctors are fleecing Medicare literally out of billions of dollars.

These doctors are diagnosing every patient with wet AMD or some other condition without proper assessment. They are using treatments that have never been described or studied in the literature and sometimes don’t even offer that treatment but still bill.

One of the treatments was called ‘subthreshold laser’ treatment. The doctor writing the article indicated he had never seen any evidence suggesting subthreshold laser treatments helped wet AMD. He HAD however seen research suggesting these treatments were detrimental to those of us who have dry AMD.

In addition the doctor being prosecuted had billed for a totally different procedure than he had actually done. Not sure what he told his observant patients.

I have said it before (repeating myself a lot lately!) but if it looks too good to be true, it probably is. If no one has ever heard of the treatment, find out why. If your doctor asks you to go along with fraudulent billing because “no one understands” his great, new process, decline.

It is a federal offense and you do not want to be part of it. And perhaps most importantly, if he asks you to pay thousands for an ‘experimental’ procedure, run the other way.

Patients do not pay for experimental treatments. They pay us.

People get desperate and grasp at straws, but remember: the time and money and heartache you are spending on these so called treatments may leave you ineligible for later, proven treatments. They may injure you more. They may scam you out of big bucks and leave you with nothing to show for it.

Unfortunately as it stands now, there are no proven treatments for dry AMD. Anti-VEGF treatments stop the growth of new vessels but leave the underlying disease. I understand your frustrations. I share your frustration. That does not mean we have to be stupid about it.

Making decisions based solely on emotion is bad business. Keep your heads. There is progress being made. Wait for it.

written June 12th, 2017

Continue reading “Keep Your Heads”

Not Your Parents’ AMD

3 pm Monday and so far it is a good day. The pool guy is working on my new liner. The funny thingee on my tummy is a normal, benign growth and the transportation company got new vans with fancy logos painted on them. No more confusion with two dozen, white vans. Life is looking up!

Lin told me there was a conversation thread in the Facebook group about parents who struggled with AMD. People remember what their mothers and fathers went through and they are determined not to become like them.

I am reasonably sure my father’s vision problems were AMD. The more I think about it his father’s vision problems may have been AMD. I remember both of them using a handheld lens to read the newspaper as well as the really strange interpretations Daddy would have when it came to TV shows. I have no idea what HE was watching but it was not the same thing I was watching!

I have said it a couple of dozen times and I will say it again: this is the best time in the history of the human race to be losing our sight. Absolutely the best. You may not realize it. You may remember what you saw and think we are doomed to go there too but we are not. We really are not.

I tried a handheld magnifier for a couple of weeks. Not doing that again. They are very inefficient. I have my CCTV, my handheld reader and my iPad which can go in the Justand.

[Lin:Linda: To see what Sue uses on a daily basis, check out these pages: A Day in the Life and A Day in the Life:Work Day.]

I can get newspapers on my phone and books from BARD (there are other sources, too, as well as magazines which are available).  I’m able to take a picture of pretty much any text I want and my KNFB Reader will read it to me. The zoom feature on my iPad will allow me to read email and research pretty efficiently. ZoomText allows me to work. (refer to the “Day in the Life” pages above)

If I want to look at something a little distance away I can use my max TV glasses or my monocular. Not too bad.

Depending upon when Lin publishes this page, you either have or will be hearing about audio description services (coming soon!). If my father had had those for the TV we would have been “on the same page” a lot more than we were when we watched programs together. Audio description can also allow you to go to the movies and live theater and actually know what is going on.

Do I want to be losing my sight? Hell, no! This is not a walk in the park but it is not what Daddy endured either. Just the same he made it into his mid 80s and managed to take care of himself until other issues brought him down. If he could do it without all of the toys, I can do it.  [Lin/Linda: My dad had geographic atrophy & took care of my mother who had Alzheimer’s using several different handheld magnifiers & a few other low vision aids.]

Yet another reason to be optimistic is all of the exciting research happening. We are poised for a veritable explosion of treatments. Not cures, mind you, but treatments. Thirty years ago there was nothing.

[Lin/Linda: To see what’s in the research pipeline, click here.]

What can you do? Be willing. Use what has been provided. If you put that iPad your son gave you in the drawer you have absolutely no grounds for complains. Bluntly put? Your extra suffering will be your own damn fault.

What else? Volunteer. Sign up for clinical trials. Join support groups. Share your knowledge and skills.

Life – and this vision loss bit included – is the craziest thing you will ever experience and none of us get out alive. Make the most of it while you can.

Continue reading “Not Your Parents’ AMD”

Get Out of That Chair

OK. So I am a noodge. I harp. But you know it is for your own good!

And you also know there is no bigger zealot than a convert. I have sort of lived my life ‘in reverse’. Bookish intellectual before 25, fitness fanatic after. I preach (and preach and preach) exercise because it works.

Right now I am having no problems getting enough exercise in. That was ‘enough’. Not too little like many people I know and not too much like a few others. However, what happens when my vision gets worse?

People NEED activity! AARP did an article on how deadly sitting too much can be. That was the word I used: deadly. We already knew sitting too much can lead to cancer, diabetes, heart problems, yada, yada, yada. Now we know it can hurt your chromosomes, for crying out loud!
Telomeres are the ‘caps’ or aglets at the ends of your chromosomes. Nice, ‘big’ telomeres are sort of protective and are found in younger people. As we age we wear them down. Smaller telomeres mean we are closer to death. Think of what your shoestrings start to look like when you lose the aglets. Those laces are not long for this world.

AARP reported people who sit more than ten hours daily and get little exercise have cells that look to be 8 biological years older than those of their active contemporaries.

I don’t know about you, but I would like to have those 8 years!

And to add insult to injury, a sedentary lifestyle style makes you dumb. OK. They did not say ‘dumb’. They are what I am not: politically correct. That is what they meant though when they said you lose brain agility.

What are the alternatives? You have lost a lot of your sight and you are scared to death to move from your chair. People put everything within reach and leave you there. Fantastic, NOT!

Orientation and mobility (O&M) services are a great thing. Problem is they appear to be as scarce as hen’s teeth. If you cannot get O&M services request a free, white cane and start to practice. Back and forth to the bathroom a dozen times. Rest. Repeat. Have them set your lunch up on the kitchen table and walk there to eat. [Lin/Linda: In the US, you can get a free white cane from the National Federation of the Blind: click here.  In the UK, I’m told you can get a free white stick/cane from the NHS but I can’t find anything about it online.]

Even if you are afraid to leave your chair you can still do all sorts of things to exercise. Side bends, seated jumping jacks, leg raises, etc. Get a doctor’s clearance and go to it. Remember this is both quality and quantity of life we are talking about.

That is pretty much it for his post. Staying mobile and agile (not to mention strong and flexible as well having good endurance AND good balance) is the key to health and contentment, good vision or not. Continue reading “Get Out of That Chair”

Everyone Into the Pool

Once more a misadventure got me to thinking about ‘things’. I got out kayaking a little bit today. Coming in, a gentleman was trying to help me and I hurried a little too much. I hurried myself right into the drink!

Not a serious problem. I was only a few feet off shore and there were people there. I am still a decent swimmer. Made me wonder, though. Do blind people swim in open water?

VisionAware, a part of the American Foundation for the Blind, strongly recommends the buddy system. In fact their article calls swimming with a partner a ‘must’. If you get separated in the surf, swim in the direction of the waves. Listening for sounds can help a visually impaired swimmer get to shore. If there is any vision left, buildings, flapping flags, and lights can help with orientation.

The people at AFB much prefer we swim in a pool or body of water that is confined and not awfully large. In the end that, again, generally means a swimming pool.

If my pool ever gets its new liner (tomorrow? It was 92 degrees Fahrenheit without a cloud in the sky today!) I could string a lane divider to keep me from going all caddywhompus. I could also put a bright-colored beach towel or other marker at the end so I don’t swim right into the wall.

If you are a competitive swimmer as I am not, you can use a person called a ‘tapper’ to touch you right before you hit and to signal the flip turn. Counting the average number of strokes you make in a lap is good for non-competitive swimmers but will slow down those who are competing.

If you haven’t considered water exercise as a visually impaired person, maybe you should. Swimming is great, aerobic exercise for young and old. Classes in water aerobics and even just swimming can provide great opportunities for socialization. Also, remember mastery as a wonderful emotional regulation skill a la DBT?

Learning to swim or even just getting up the guts to get into the water after a vision loss, is a serious accomplishment.

Once again our friends across the pond are putting some cool stuff out there. Britain has an organization called British Blind Sports, at britishblindsports.org.uk, of course. Their visually impaired friendly swim program sounds exciting. They offer a whole training program for coaches. This program also includes information for qualifying for the Paralympics.

Once more I looked for program serving us ‘mature’ folks and found mostly stuff for kids. If you are near a YMCA or a JCC (Jewish Community Center) with a pool, call and ask. That brochure with training ideas from British Blind Sport could be a resource for a swimming instructor with no experience with the visually impaired.

Remember the more fit you are, the healthier you will be. The healthier you are, the longer you keep your independence. Water exercise can help you to achieve these goals.

Now, everyone into the pool! Continue reading “Everyone Into the Pool”

Enjoy the Show!

Afraid I am not getting very far in the housework department today. Dishes in. Laundry in. I took Windex and a paper towel to all of the glass in the house. I deserve a break; right?… So glad you see it my way!?

I am supposed to go to Manhattan next Saturday. Uptown. The person taking me wants to see the Cloisters and the New York Botanical Gardens. Fair enough. I will take it.

It got me to thinking, though. What if I decide to do my idea of the Big Apple? Port Authority, lunch in Little Italy or Chinatown and then a Broadway play.

Just for giggles I did a little digging about audio description and live performances. I am pleased to say, if you live long enough to actually snag a ticket to Hamilton, you can get it with audio description! Also, Aladdin, Wicked and the Lion King! Not to slight the Book of Mormon because they offer it too.

Since audio description is the new kid on the block when it comes to accessibility, it appears that is the list for Broadway right now. If it is a big selling point for them, others will offer it. The law is the accommodation has to be ‘readily achievable’. That means a big budget and available describers.

If you are not planning a trip to ‘The City’, the Audio Description Project provides lists of performing arts presentations with audio description by state. For our friends in Massachusetts there are four, different venues offering audio description for live theater. These are all in the Boston area. Minnesota lists a crazy number of potential offering and Nevada lists…one. Hmmmm.

If you are in London you can experience the rock opera Tommy with audio description. They also have Wicked and the Lion King and a score of others including Jesus Christ Superstar. Most of them are described by a service called VocalEyes although many others offer the services with in-house staff.

VocalEyes? From the little bit I gleaned it appears they are a not for profit operating pretty much all over Britain. They seem to describe everything from Sesame Street to Shakespeare.

So the good news is there is a limited number of venues in many cities that offer the service for live performances. You can continue to go to the theater occasionally. You appear to have a much broader selection in London than any city here stateside. (Fine by me. I’ll go. I like London.)

US or UK though, you still have to ask for the service. For Broadway, Arts Access has a page describing the request process. Once again you have to jump through some hoops and be flexible, including allowing two weeks lead time. Not sure how it is done in London but the Access London Theater site should be able to help.

Hope you enjoy the show! Continue reading “Enjoy the Show!”

Best Places for Us to Live

Hey, happy Saturday! Feeling a little better. My husband dropped me plus the bike off at the church where the yoga benefit was being held. Second time in two days I was in a house of worship. So far nothing has blown up or caught fire so I guess I am safe!?/?

Did two classes. Had a banana split at the ice cream parlor. Got money out of the cash machine. Rode home. I would have gotten some leaf lettuce at the farmers’ market but I forgot they close at noon.

Before I forget, I just want to quickly note my bike mileage is now over 50 miles. Am I going to get my usual 300 for the season? Maybe not, but 50 is better than the seven miles I did last year. Adaptation and increased accomplishment are possible.

Anyway, back on track, as I was puttering around in town it dawned upon me I am pretty lucky to be living in a town that not only has the basics but a few amenities, most of them easily reached from the town center. Then I started thinking about a little concept called livability.

Livability is a “different strokes for different folks” sort of concept. I like having four seasons. I like having a lot of green space and opportunities for outdoor recreation. I also like access to cultural events. Spectator sports? Nope, but for some of us that is an important consideration.

Being part of a ‘special’ segment of the population means we have similar needs, though. That means there should be towns and cities that fit us as a group better than other towns and cities. And that begs the question: where are all the other disabled people moving?

Wallethub.com did a study just generally for disabilities. Generic. This study looked at cost of living, medical facilities, jobs filled by the handicapped, etc. Their overall ‘winner’ was Overland Park, Kansas.

The American Foundation for the Blind did a study in 2003. Not sure how recent the update is (2017?) so caveat emptor once again. Don’t pull up stakes and head for Charlotte, North Carolina, the number 1 pick, until you have checked the current data.

Why Charlotte? Decent public transportation for one thing. City ‘walkability’ is good and there are some audible traffic signals. Such accessibility features allow for more independence for low vision residents.

Don’t want to move to the east coast? Berkeley came in second.

I looked for the best places to live with a visual impairment in the UK. Got nothing although there were some thoughts on where to go for an accessible vacation.

Canada? Burlington and Hamilton got good, general ratings but nothing specific to those with vision loss. If you want, you guys can come on down here. I think there should be room. ?

And now the discussion questions: what do you need for a town or city to be more livable for you? Can you find those things already in your community? Can you advocate for those things to come about? Change is possible. We just have to be willing to do the work.

Written June 10th, 2017

Continue reading “Best Places for Us to Live”

Mi Depression, Su Depression

We all know adjusting to sight loss is stressful. We are well aware of the times it has freaked us out but how aware are we of the impact our loss has on those around us? How often does anyone notice the stress on family members ?

Back in 2009 – that is 8 years ago, guys. Long enough this report could be in the third grade! – there was published an article entitled Family Function and Low Vision: A Systematic Review. The authors lamented they had not had many appropriate articles to review and – guess what – I found pretty much next to nothing since then. Families of the visually impaired are being ignored!

But yet families are a huge support to those who are losing their sight. Adequate support – both practical and emotional – protects against distress and other negative health concerns. The way we stay functional and sane is by having people there for us.

The problem is sometimes family members go through all of the stages of adjustment we do. Shock, denial and mourning are not just for us. But since we are the identified clients, we (hopefully) get the services and the attention. They don’t.

Visual impairment is related to separation and divorce. (Or at least it was in 1993. THAT study is old enough to vote.) There have also been more recent studies on emotion contagion.

Yep, mi depression, su depression*. And if that is not bad enough, the spouses of the visually impaired even have worse physical well-being than controls. Jeez.

The suggestions from the authors were pretty basic: education and mental health counseling. Family members need to know about visual impairment so they know how and how much to help. Overprotection can be nearly as damaging as neglect. Mental health support is pretty self-explanatory. Find and investigate the negative belief systems and see what you can do to refute them. Provide emotional support.

In short, the fight can be as hard on the guy who holds your coat as it is on you. Family members need to know about your vision loss and be told the level of support you need. They need to have time to do things for themselves and they need someone to support them as well. None of this is easy on anybody but it is easier when we do it together.

*translation of title is “My Depression, Your Depression” as in the phrase “Mi Casa, Su Casa” which literally translated means “My House, Your House”.

Continue reading “Mi Depression, Su Depression”

App Update

Back to the Daniel Roberts article. Actually sort of back to Roberts himself. I just watched a video of him using the LowViz Guide.  [Lin/Linda:  we published Sue’s page Comparison Shopping on June 5th, 2017, where she talked about Dan Roberts.]

The LowViz Guide was basically Roberts’ brainchild. It is an indoors navigation system. Can’t find your way around the hospital or the cruise ship? The LowViz Guide may be able to help.

I say maybe because the venue – be it conference center, hotel or hospital – has to have been tricked out with iBeacons. Your smart device ‘talks’ to the iBeacons, the iBeacons talk back and your device tells you where to go.

(I find that only fair since I have told my devices “where to go” on numerous occasions!)

In the video Roberts demonstrated the app has not only VoiceOver capabilities but also gives you ‘hot’ and ‘cold’ signals. The ‘cold’ signal is very irritating as, I guess, befits a message that is saying “wrong way, buddy!” It would make me want to go the proper direction just to shut it up. (A perfect example of negative reinforcement for you psychology students.)

There is an informative article on the LowViz Guide on the American Federation of the Blind website. It does not say where the iBeacons have been installed and I got the impression the cost of installing these things is not small.

The LowViz Guide app is downloadable for free from the app store. [Lin/Linda: I don’t see an Android version yet.] If you can get a list of places with iBeacons and you are actually going there it might be fun to see how it works.

Another new technology I found interesting was Aipoly. The ‘Ai’ in the name stands for artificial intelligence, of course. Funded by Google, according to Natasha Lomas in a 2015 article, Aipoly uses computer vision and machine learning technology to recognize what is going on in photos you take with your device. Aipoly is supposed to be able to identify multiple objects in a scene. It is also reported to be able to identify the relationships between things in the photo. For example, Aipoly would say something like girl eating ice cream. It is sort of like Be My Eyes minus the thousands of volunteers.

The whole process can take as little as five seconds to have a scene described. The longest time is said to be about 20 seconds.

The most seriously cool feature of Aipoly -and one that will undoubtedly interest our readers in Massachusetts – is the system has the beginnings of the ability to identify facial expression!

As of the writing in 2015, the system was starting to be able to recognize very exaggerated facial expressions! It is not yet ready to describe subtle expressions but there is hope.

Be aware this system does not work in real time, but they are trying to get there. They are also trying to get it into as many hands as possible. I am downloading a free version from the App store even as I am writing this. They have also come out with an Android version. Not sure if there is a cost for that or not. [Lin/Linda: It is free, too.]

I will let you know how it works later. Taking some time to load. And, by the way, I don’t have to be the only product tester. Feel free to download it and experiment yourself. Continue reading “App Update”

How Many Favors?

One of the problems with being a cockeyed optimist and a Pollyanna is I always expect good things and relatively easy sailing. When that doesn’t happen, frankly, I become perturbed. I HATE to be thwarted.

Last evening I started downloading Golden Prey (book by John Sandford) from BARD. It has stopped several times since then.

I think it has to do with too much in my iPad memory. My ability to clutter up my environment extends to technology and cyberspace!

Another case of “do as I say, not as I do”. Deleting books you have already listened to is fine. You can always get them again. FYI for you non-technical savvy folks, your devices will run faster if you do.

My schedule is changing for the summer and I have to figure that out. Transportation will only pick up until 7 pm. After that my coach turns into a pumpkin! (Of course, for some of the ‘lemons’ I have ridden in, that would be an improvement!)

I have been picking up signs a woman who has dutifully transported me up for the last 15 months has gotten tired of it and needs a break. Changing my schedule so that I can ride my bike at least some of the time and take up some of the rest of the slack with transportation should work. I also have a co-worker who has started to take some of the same classes and who has offered to haul me. Also another gym friend.

People truly are wonderful and generous but they are not saints. Problem becomes they hate to let you down and will keep on helping even when it is no longer convenient.

I am starting to think I need some sort of rotation system. I already try to limit how many times I impose in one week. I try to keep it under three rides – counting someplace and back as two – a week for any one person. Except my husband, of course. He drew the short straw when he married me!?

Once again there needs to be some sort of etiquette book for this! Any ideas about the ride dilemma? How many favors for the old, visually impaired chick is too many?

Still haven’t got the new pool liner. Got that call at 7 am as the rain poured down.

And my frustration that you may actually care about….Aipoly, or at least the free version I downloaded, did not live up to its hype! My diet Pepsi bottle was “a wine bottle” (however, that is a thought!) and my glare glasses were “one string of headphones”. I got too close to my sandal when I took the photo so that was “a basket” although when I pulled back and tried again, Aipoly got it right.

Now, in all fairness, I am cheap. The word free can be music to my ears. There is an Aipoly version for slightly less than $5 per month. That one is supposed to be much ‘smarter’. Since I am cheap and not in need of such a service yet, and since I can never remember to cancel those damn ‘free’ trials, I’m not downloading it. If you are in need of such a service and can remember to cancel a free trial, try it and get back to us please.

Type at ya later! Continue reading “How Many Favors?”

Comparison Shopping

Good evening! I am doing some comparison shopping here. Lin and I were looking at some TV magnifying glasses at the request of a reader. We found the Eschenbach ones I have for $164 and another pair for $49.

What the hey, for $49, I will order them. The truth of the matter is, I am REALLY hard on parts. My CCTV has been replaced and then repaired. My handheld reader was smashed and I had to replace it. My max TV glasses have also been replaced once. And we cannot forget the crack I have in my iPad screen. Can you say “bull in a china shop”? The day is going to come that the people repairing and replacing my stuff are not going to be so understanding. Better have a spare available.

So, the $49 max TV glasses came today. I gave them to my husband to be my “comparison shopper”. Then we compared notes.

The Eschenbach pair is the superior product. They are heavier, possibly because they had solid temple pieces. The inexpensive glasses are not quite as “solid state”. When I leaned forward the telescope part slipped and I had to readjust my focus.

That said, I can see just as well through the $49 pair as I can through the $164 pair. Nice and clear at 2.1 magnification, same as the Eschenbach ones.

Moral of the story: if you are not hard on parts, you don’t mind adjusting the wheel regularly and you do not have $164 to spend the more inexpensive pair may be for you. They are manufactured in China by Joyutoy and are available, of course, on Amazon.

Those of you who are using assistive technology and have any comments on it, please share. I would like to do more of this but there is a limit to the funds and we still have not found a multi-millionaire corporate sponsor (although we remain forever hopeful?)

Moving right along, Lin sent me an article written by Dan Roberts, the guy who wrote The First Year: Age-related Macular Degeneration. Roberts apparently does a yearly wrap-up on the progress, medical and technical, that has been made in fighting and dealing with vision loss. I followed one of the links to Living Well with Low Vision and glanced through some of the technology.

Under text-to-speech readers was something called the Aries Smart Reader. Available from Enhanced Vision, the Smart Reader weighs under 5 pounds. The cost is $1800.

That is pretty much what I know about it. I have not seen it nor do I have a clue how well it works. For me, personally, it is going to stay in the warehouse. Two big sellers for me are portability and price. I have enough to carry and I do not have a spare $1800 to burn.

I have limited need to have text to speech capabilities at this time. When I do need them, I have my KNFB reader on my iPad. Zero additional weight and a $100 price tag. Of course, for some unbeknownst reason my KNFB ‘girl’ is Australian! No problem. The couple of Aussies I have met have been good people.

Again, I am speaking totally personally about preferences and have never laid eyes on this product. Different opinion? Let us know and we will publish it. Continue reading “Comparison Shopping”

Wanted: Tech Savvy Teen

On the hunt again. This is what happens when you give me free time…or more accurately when I need to write a psych report and I am NOT in the mood. (Thank you for giving me a reason for my procrastination!)

What I am hunting is how to set your devices to play the audio descriptions on movies. This is actually amusing because I may watch about three movies a year. Netflix? Most people love it but I have never subscribed.

That means we are again in uncharted waters for me. Good luck and may God be with you. Here we go.

Chatty Chelby has a YouTube video on how to turn on descriptive audio on Netflix and using the internet browser, Xbox 360, Android phone and iPad. She completes the job for all devices in a less than five minutes presentation. Seems easy. An example of audio descriptions was included in Chelby’s video and it was detailed all the way down to the ‘arc of light’ going over Cinderella’s castle in the Disney intro. So far so good. Thanks Chelby!

Accessible.org has a page on “How do I turn on captions or descriptive audio in my media player?” For those of you who are not computer literate media players are on computers. The article contains directions for several different operating systems. This article should be helpful if you watch TV or movies on your computer.

I keep looking for articles that will talk about standard DVD players in the USA. Not doing so well for the States but kudos to the Aussies and the Kiwis. They have a couple of informative sites on this matter.

Here we are! The Audio Description Project, “an initiative of the American Council of the Blind” has a rather large and imposing but quite comprehensive website pretty much covering everything in the good ol’ U. S. of A. when it comes to getting audio description on your device. DVDs are second row, next to the last. If you are as tech savvy as I am, you might want to borrow someone’s 14 year old son for this project. He should have it done in about 5 seconds. Me? I would swear a lot.

Now on to the UK!

Well, as usual, the Brits are more interesting than us Yanks! June 26th they are having a workshop called “Audio Describing Burlesque”! Intriguing. The workshop “tackles the challenges of describing risque dance performances with discussion and practice”. Is that practice in risque dance????? Fish and chips optional. I guess you don’t want all that fried food if you are practicing risque dance.?

OK. All fun aside, the BBC is supposed to provide 10% of their programming with audio description. A little paltry right now but I know the people who gave us Dr. Who will improve on that! And they have a website, Help Receiving TV and Radio that has a special section on audio description.

So, here you are, another assignment. Go out on the street and grab the first, tech savvy looking teen you see. Bribe him to set this up for you and you should have some idea what is happening on TV by this evening. Including the risque dance, of course. Caio, caio!

Written May 29th, 2017

Continue reading “Wanted: Tech Savvy Teen”

Time On My Hands

Memorial Day, 2017 and it has been raining off and on for all three days of the holiday weekend. Right now it is ‘on’ and raining hard.

I have been taking the opportunity to do some other things. For example, I pulled out all of the furniture in the sunroom and ‘really’ cleaned. All the while I was doing that I was listening to the latest Jeffery Deaver book, The Burial Hour. Good ‘read’. Love my BARD.

I also wrote the questions for the review game for DBT class. Wednesday is the last day of distress tolerance and we go right into mindfulness. Get ready for more ‘thoughtful insights’! Ha!?

And in other news, I have done some very basic cooking. Gasp!

If you have been following along you know some basic and not always flattering things about me. For example, I am a slob. Also, if God wanted me to cook, He would not have invented restaurants! Domestic goddess? Not me!

While I am not planning on retiring (and as of last week, no one was planning on letting me go! Praise be!), I am cognizant the time is coming I will be home with time on my hands. Also, on a budget that may not allow regular restaurant meals. Maybe it is time to practice (how about start to develop?) my culinary skills!

To that end – and also for a page! – I came upon what looks like a nifty little web site. The title of the site is BlindHow. This thing has links to other sites with cute little monikers like Cooking Without Looking and The Blind Chef.

But the site also has other stuff. There are links to just about every practical skill you can think of. Shopping? Laundry? Personal finance? They have links.

Speaking of audiobooks as I did above, I found a link entitled 91 places for free audiobooks online. If you do not quite qualify for BARD, you could probably find an audiobook site that is not as ‘exclusive’. La di da.

The site also has links to information on movies with ‘descriptive audio’. From what I gather, this is a system aiming to keep the blind guy in the back of the theater from asking “what’s happening now?!?!” in all of the suspenseful or sexy parts of the film when everything has gone quiet.

Anyway, following a link, I found a site called MoPix and sponsored by the Media Access Group. They have a list of about a dozen movie theater chains in the US offering headphones and devices that will allow you to access the description apparently embedded on certain flicks. The list of those was pretty long, too. [Lin/Linda here:  I found this link that says that MoPix has shut down. Their Facebook page had no recent posts. Sorry.]

I would volunteer to go and check it out for you but our local movie chain is on a short list of chains that do NOT offer the service. (Did you notice the local paper was not available over the phone either? What the…..?)

Oh, but if you don’t have cooperative local providers (dig, dig), the American Council for the Blind sells ALL of the DVD and Blu-ray discs manufactured with descriptive video since 1997. Do you need any special equipment? Not sure. Links for some of the movies take you right back to Amazon. I did not see a special offering of DVD with audio descriptions but I am legally blind; remember? May have looked right over it. [Lin/Linda here:  I do not think that you need special equipment for DVDs & Blu-ray disks but check here first to be sure regarding particular devices. ]

Anyhow, BlindHow looks like a winner. Problem is, it probably just took away all my arguments for a housekeeper and a cook! Dang.

Written May 29th, 2017

Continue reading “Time On My Hands”

Uneventful Trip

Just came back from Walmart. When I checked the early days page Lin had published for today it was my first trip to Walmart as a visually impaired person. I would say what a coincidence but this girl has been known to ‘live’ at Walmart so it really was not.

Anyway today the trip to Walmart was….totally uneventful. Fine. No issues. I tell you this because in my cockeyed optImist (yes, there’s an upper case “I” in the middle), Pollyanna way I want to reinforce the concept there is hope. Yes, I have geographic atrophy with no scarring – just ‘no’ macular; my ‘divot’ just keeps getting bigger. And yes, I have no clue what it is like to be you in your situation.

However, for the great majority of us things can be OK with adaptations and the learning of skills.

I cannot drive myself to the store. My husband now parks near a cart corral. He makes sure I know we are down the line from the garden center or bank sign or whatever and then he turns me loose. I generally find my way back without incident. Do I wander around lost sometimes? Sure do. It is a matter of my not paying attention in the first place. I did that when I was fully sighted.

Absent mindedness is not a side effect of vision loss!

In the store I am using eccentric viewing…a lot. Although I carry my toys just in case, I seldom get them out. I have learned to use my peripheral vision and I am pretty good at finding things I need…and things I don’t need but really want. Got (another) cute pair of yoga pants and (another) cute scarf today.

There are times I have to be more careful and really LOOK. For example, I almost picked up hot sausage instead of mild today. If there are several varieties of something and the packaging is very similar you need to double-check. When you don’t drive often things don’t get returned. I have a chili potpie in the freezer that I could have sworn was beef. Been there for weeks. (Perhaps this is an opportunity to expand my horizons?)

I use a lot of habit learning. The credit card machine is now easy. That is habit training. I pretty much know what comes up next. Press the same buttons all of the time.

And if I don’t know or cannot see it, I ask. Sometimes I admit I am visually impaired. Those are generally the times when I know a full sighted person would have been able to figure it out and I don’t want to look like an idiot. Other times I just don’t bother to ask.

Nobody thinks the less of you if you cannot find something like the honey. Fully sighted people ask questions like that, too!

So there you go. One more page about my uneventful life. Stay tuned. Next I might write about watching paint dry!

Written May 28th, 2017

Continue reading “Uneventful Trip”

Improving Communication: Part 3

Hello! Rode my bike to the Y. Took a couple of classes and rode home. Then it was dog walk time. Right now I could stand a nap! Hopefully I can stay awake enough to write a sensible page. A little wonky? You know why!

I have continued to look for more information on loneliness and poor, social relationships for the visually impaired. You remember, miscommunication because of lack of nonverbal cues.

[If you have not read Sue’s previous 2 pages, I suggest you do that before continuing.  First, there’s Improving Communication: Part 1, then Improving Communication: Part 2]

The Pocklington review ended up saying there are no current answers. They called for more research. Hopefully the increasing numbers of us visually impaired will encourage someone to get on the proverbial stick.

Once again, there should be some sort of manual for this but I cannot find one. (Back to if you want something done right, do it yourself! Anyone want to make topic suggestions?)

An abstract from work done by Wang and Boerner indicated responses in their study fell into two categories. Sometimes the visually impaired adjusted their behavior while other times they just let the relationship go bad.

The group who tried to maintain relationships depended upon a few different strategies. These strategies included explaining themselves more and being more assertive. They also included relying on other senses for information, faking it and being more selective about whom they interacted with.

Remember several articles I read for both vision and hearing impairment stressed the need to share you have a disability. That can be hard for some people although not admitting to a disability can end up being harder in the long run. Sometimes we just gotta accept.

The people who let relationships go of course did things differently. They would withdraw and make fewer efforts to socialize. They would also become angry and tell people off.

As I research this, I keep coming back to the need for work with a good speech and language therapist to improve communication skills. Or at least that is my conclusion. Once again I could be dead wrong.

Quite a while back an Italian study, Extracting Emotions and Communication Styles from Prosody, included some neat charts that are basically a guide to identifying speaker emotion from prosody. Prosody is the pattern of stresses and intonations in speech. For example, joy is characterized by factors like quick meter, quick attacks and slight or missing vibrato.

If these characteristics have been identified and listed, it means people can be taught to recognize them. And if we can be taught to recognize them, we can harness them in efforts to improve communication which just might lead to fewer feelings of isolation and loneliness. Maybe?

….for what it is worth. That’s what I got. If there is a definitive answer out there, I don’t got it. I can’t find it. Anyone have any other ideas, let us know and we will pass them on.

These three pages were in response to an inquiry from a reader. If she knows one person with these concerns, we suspect there are dozens more lurking in the shadows. By addressing her concerns – or yours- we may help others.

Keep those cards and letters coming!? Continue reading “Improving Communication: Part 3”

Improving Communication: Part 2

Continuing on with the review from the Thomas Pocklington Trust, I discovered once again we, as the visually impaired, have not been given a lot of attention or press by the social sciences. It was remarked research on visual impairment and social isolation is rare and good research on the subject is even rarer. [If you’ve not read the page before this, click here.]

One of the articles reviewed and praised was Heine and Browning’s (H&B) research on communication breakdowns. The Heine and Browning research was one of the few that did not just agree that social isolation happens but actually proved it scientifically. They also made some suggestions about fixing the problem.

Because of not reading all sorts of (now inaccessible) visual cues, people who have low vision tend to misunderstand and commit faux pas. If uncorrected, these mistakes can lead to serious, social problems. H&B suggested the visually impaired be taught repair strategies for communications.

OK. Unfortunately, when I went online most of what I found was aimed at the hearing impaired. Strategies to Assess and Improve Communication Repair Skills was an informative piece…for someone working with hearing impaired children. The suggestions were repetition, revision, addition and nonverbal with a note saying hearing impaired children put more emphasis on the nonverbal cues as they get older. Great. Not that much help.

Anyway, communication repair strategies might be a good thing to learn if you are really putting your foot in your mouth in conversations. There might be a speech and language therapist you could speak with to get some pointers. You can find speech and language therapists at most rehabilitation facilities.

H&B (above) also suggested support groups. There people who can no longer read nonverbal cues can get pointers from others and sharpen their skills.

One of the problems pointed out by the Pocklington Trust review is everyone else sees the communication problems of the visually impaired as OUR problem! They want us to focus on ‘our’ problem and get some sort of remediation to ‘fix’ ourselves!

The fact of the matter is: there is no fixing our sight problems. Communication has a very LARGE nonverbal component and it is very hard for the visually impaired to pick up on those messages.

It is important that sighted people help to smooth out rough communications and help the visually impaired integrate better into general society.

Are they going to do this? Not without requests and reminders they are not.

So back to the review, which is from the UK, by the way. Supposedly, the UK has something called the adult UK sight loss pathway as part of the UK Vision Strategy. Again supposedly (the article says only about half of their eye clinics provide early intervention support) part of this plan is to have available Eye Clinic Liaison Officers to provide direction and emotional support. It is supposed to be a way to give people early intervention.

As usual, it seems if you want something done right, do it yourself. If you have a support group in operation, you might enter into agreements with your ophthalmologists. Ask them to give your name out to all new cases. Be your own eye clinic liaison officers.

So no, this page does not answer the question asked. I cannot seem to find a good answer. I will keep looking, though. Continue reading “Improving Communication: Part 2”

Improving Communication: Part 1

TGIF! Greetings from the land of organized chaos, aka my life!

I have not been writing as regularly as I would like. For one thing, as I keep pointing out, there are lulls in the action with AMD. You adapt to a certain level of loss and things are calm until the next loss of vision occurs.

Crank up the magnification and soldier on until the yet next disaster. Lulls are not all that page worthy…and I don’t need a disaster right now.

The other reason is my days have been flying! I am taking more counseling clients and my days are jam packed. Nothing like being busy to make the time fly!

All of this by way of saying, I am sliding into a holiday weekend (Happy Memorial Day!) and I am going to try to pound out a few pages over the next few days.

We stopped for deep dish pizza on the way home. (The new comfort food!) I walked the Beastie Baby in the neighborhood and the field. She drank from every rain puddle (mud flavor! Yum!) and we investigated what looked to me like bear scat (poop, no bear. Life is good). Well fortified and with the ‘adventure’ out of the way, I guess I am ready to go.

The topic was suggested by one of our readers. She is located in Massachusetts and has just helped to launch a new, vision loss support group. (Kudos!) The topic had come up in her support group: vision loss and social isolation.

The short answer is “yep”. Problem is, I rather doubt I can make a page out of that. In trying to flesh things out a bit, I came upon a publication by the Thomas Pocklington Trust. Published in 2013, this literature review contained 44 pages on the topic. Good resource. [Lin/Linda: it’s 44 pages if you download the Word version; 8 pages for the PDF version which is what I’ve linked to.]

The review starts by pointing out loneliness is not part of natural aging. Loneliness and social isolation are also not inevitable for the elderly, visually impaired population. (So maybe “yep” is not the short answer?)

That said, however, it is easy to see how vision loss, loss of function and depression can lead to social isolation and how social isolation can loop back around and cause more depression, etc. People with vision loss can really end up in a nasty downward spiral.

The review acknowledges the problems that can come from not recognizing faces and facial expressions. Without nonverbal cues to go by, communications can easily breakdown.

Lack of good social communication can break down social relations and lead to a drop in feelings of self-efficacy. Feeling you are not able to adapt and cope with your loss once again leads to all sorts of issues and perpetuates the downhill slide.

I think I mentioned before that feelings of self-efficacy are exceptionally important to mental health. The “I can do it myself” attitude can be reinforced by success in using assistive devices. In another page I believe I quoted something that said one of the best predictors of life satisfaction is access and use of assistive technology, both high and low tech.

OK. To be continued. Since some of us have trouble reading long text, I will stop here for now.

Continue reading “Improving Communication: Part 1”

Touching Tribute

Hello again. Lin just told me she was all caught up with my pages. Silly girl! [Lin/Linda: I should know to keep my mouth shut!]

Either the muse has struck again or I am just trying to avoid doing real work. Not sure but I have some page ideas!

This morning when I was scrubbing the tub – in the corner, in the dark and with extremely poor contrast – I found myself running my hand over the porcelain (or whatever it is they make tubs out of these days). The soap scum was bumpy and I could feel where I needed to put more effort.

I started to think about how often anymore​ I use touch. If I cannot decide what something is by looking at it, I touch it. Often just feeling if it is hard or soft will give the necessary clues for identification.

We all ‘know’ we should harness our other senses but we can be self-conscious about touching things. I found Chapter 3: Encouraging Vision Through Touch (chapter 3 from what? No clue) and in there it is said America as a society is very avoidant of touch. How many times as a child were you warned not to touch? While we still have those directives in our heads, they won’t serve us well now we are visually impaired.

However, how much sense does it make trying to find the keyhole with poor vision when all you really have to do to succeed is run your fingers around the knob? Isn’t it better to feel the end of a screwdriver than to put it right up next to a vulnerable eye? (Examples from “Chapter 3” with thanks). Some of this stuff sounds like common sense but common sense is not all that common!

I have been looking for exercises to develop the tactile sense in adults. I have had zero luck. There are dozens of offerings if you want to learn about visually impaired and deaf-mute blind kiddos. Just nothing for us ‘older children’.

So, not being able to quote an expert, I have to offer ‘common sense’ advice. Use your sense of touch. Put your hands on things instead of your nose!

Fun facts from Getting to Know You: An Individual Differences Approach Beginning with Sensory Assessment:

  • There are six types of sensory information that touch can detect. There are deep and light touch, vibration, pain, temperature and how many points of contact there are
  • One fingertip has 9 feet of blood vessels and 9000 nerve endings
  • Hands are used to see, hear, release tension, communicate and as tools
  • Haptic perception (size, shape, temperature, hardness, texture, weight and even spatial perception) are generally developed by 15 months of age

In short, you have hands to not only manipulate your world but to explore it as well. Use your sense of touch! Continue reading “Touching Tribute”

The Stuff of Life

Good morning. Fair warning; I might just ramble on this page. A bunch of little things happening. Nothing major.

Of course, little irritations are the stuff of life. I am also thinking they are more the stuff of low vision life.

I am waiting for transportation but I have no idea when they are coming. I got a call but the recording never clicked on. That meant anywhere from one minute to a half an hour. Better than yesterday. Yesterday they never bothered to put me on the schedule!

Fortunately my husband was able to take me. I seem to have a large number of ‘saviors’. Did I tell you a total stranger gave me a ride home from yoga? I was sort of stuck. The stranger told me she has been taking class behind me for six months. Couldn’t prove it by me.

That is a bit embarrassing. The next class also gave me a problem. I really wanted to talk to her but I could not see if she were there or not. What was I supposed to do? Walk down the back row staring at people? That would have been a bit weird.

I finally decided she had been told (and had observed!) that I am visually impaired. If she wanted to talk to me, she needed to speak to me first.

Why doesn’t someone write an etiquette book for these things? Miss Manners for the Proper Low Vision Sufferer!?!? There have to be some sort of rules! I get frustrated having to reinvent the wheel all of the time.

I got my CCTV back from the repair shop. I held on to the loaner a few days just to be sure all was well with mine. Also because returning the loaner was a semi-major event. Pack it up with all sorts of cushioning. That, of course, made it all a little too much for the box so one of us had to hold it closed while the other one taped. Then I discovered they had neglected to include free shipping labels so I needed to call for them. No to mention getting the bulky box out the door and to UPS!

(UPS will pick up. You can schedule a pick up by calling 800-pick ups which is 800-742-5877. However, their website does mention a ‘residential surcharge’. How much, no clue. We are the strong back and weak mind type and just always take things to the store.)

It would be nice if there were local repair options but I don’t believe there are. FYI, though, when I was not sure the company was going to be able to supply me with a loaner, I called Blindness and Visual Services. As a former client I could have borrowed one from them, quality not guaranteed. Pack that one away in your memory for a rainy day with a ‘sick’ CCTV.

Last thing for this post, I have my first visually impaired counseling client! I won’t say much about that person because of confidentiality. Instead, just a quick comment about my (of course!?) thoughts on it. To wit: it is happening slowly but it is happening. Remember that stuff about God closing a door and opening a window? The stuff about not forcing your fate???? How about “build it and they will come”? There you go! We are building and they are coming. Cool. Continue reading “The Stuff of Life”

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