Category: Sue’s Musings

Drugs with Eye Side Effects

Every once in awhile I have a van ride during which I am really ‘white-knuckling’ it. Forgive me, but it is always one of the older drivers.

Those are the rides I really want to kick them out of the driver’s seat and take over myself. I believe I could do a better job!

The other week we went onto the berm on the right and crossed the double, yellow line at least once in a seven or eight mile trip. I was hoping not to get the same driver again but the next day, one guess who sat in the driveway. On this trip he started out by regaling me with a list of the near disasters he had had during the previous week. Dare I say this is NOT a way to instill confidence in your passengers?

He then went on to tell me he had discovered his medication was giving him double vision. The double yellow line was quadruple. Take your pick which one you want to stay to the right of!

The moral of the story for us could be stay away from impaired van drivers (although in truth we are often at their mercy) but right now I want to talk about drugs that affect your vision. There appears to be quite the list of medications that can really mess up your vision and some of them can actually damage your eyes.

I found a 2011 article in Review of Ophthalmology called Systemic Drugs with Ocular Side Effects. It may not be totally up to date but it seems to be a good general overview.

For example, Fosamax for osteoporosis can cause inflammation of the eye. Cyclosporine and Tacrolimus given for organ transplants can cause vision loss as a result of their effects on the sight center of the brain. Fortunately this is generally reversible. Then there is Minocycline, an acne drug, which can cause brain swelling and permanent vision loss.

So far safe? No osteoporosis or acne? How about rheumatoid arthritis? Plaquenil is a known retinal toxin with irreversible side effects. Fortunately, taken as prescribed you should have no problem but don’t overdose.

Topamax is for migraines and epilepsy. Topamax has been known to cause glaucoma.

How about pee problems? Anyone taking Flomax? There is a syndrome called floppy iris syndrome. It makes cataract surgery risks a lot higher.

Then, for you guys, there are the erectile dysfunction drugs. Viagra and Cialis both divert blood from the brain. There are all sorts of problems here. First of all there is blurred vision because this interferes with the neurotransmitters in the retina. Another problem is central serous retinopathy which is a collection of fluid in the macula.

Unfortunately the list goes on and includes blood pressure medication and over the counter herbals. There are many, many medications that you never thought would have any impact on your eyes but do.

The takeaway message for this page is tell your eye specialist everything you are taking, everything including over the counter medicines and herbal remedies. Some of your vision problems might be drug related.

written 8/29/2017 Continue reading “Drugs with Eye Side Effects”

No Brainer

I have not been able to get my act together all weekend. I have had low motivation and not a lot interests me. Depressed? Not exactly.

To ‘fess up’, I must admit what I have been doing all weekend is listening to an audiobook. I have been sort of ‘into’ Kellerman’s The Golem of Paris which I discovered is actually the second in a series. Now I have to listen to the first one!

My head has been full of the legend of the Golem of Prague and the Book of Enoch (weird, I know, but I kid you not. They are integral parts of the story line.) But what if my head were full of worries and hopelessness and dread?

I would not, by a long shot, be alone. PsychiatryAdvisor reports 57.2% of older people with vision impairment have depression. That is up from 43.5% of older people without vision loss. If those numbers are accurate, half of you folks are depressed. Crap. This is not good!

Some of this will be a recap, but I like to think it bears repeating. For example, I want to repeat gradual vision loss or loss in one eye but not the other is very anxiety producing! Where do you think the saying “waiting for the other shoe to drop” came from? Waiting for something bad to happen ain’t good.

Then there is the interaction between loss of everyday competence from vision loss combined with the loss of everyday competence from age-related cognitive decline. There is a one, two punch! Facing loss of independence from that combo is depressing.

This combo leads me right back to what I have preached and preached and preached some more. Exercise helps to keep you sharp. Learning and using low vision strategies and technology helps to keep you competent. Sharp, competent people keep their independence. Independent people are less likely to become depressed. End of lecture once again.

The second installment of the article starts with what I consider to be a ‘no brainer’. To wit, if you can save your vision, you can help save your mental health. Like I said, no brainer. Go for your shots. Investigate changes in your vision immediately. Hard to get more basic than this.

Next the article talked about using your low vision skills and technology and a little thing called behavioral activation. What behavioral activation basically is is getting back into life. Too bad transportation is a pain in your sweet, little tushie. If it gets you to your activities – even an hour and a half early – use it. Swallow your pride and ask for a ride. Remember Cabaret? “What good is sitting alone in your room?” Good for depression! Instead,”go taste the wine! Go hear the band!” I bet Liza Minnelli never realized she was a behavioral activation therapist?.

There are several paragraphs on what psychotropic medications NOT to use when you are depressed. I think those deserve more research and their own page. For here, just remember, question your doctor about the vision side effects of EVERY medication you are prescribed. You are your own best advocate.

OK, I have nagged you enough for one page. What did mother say? “I only do it for your own good.” Me, I’m going back to my book. Did you ever hear of the Golem of Prague?

written August 27th, 2017 Continue reading “No Brainer”

Another Potential Treatment

The more I look into this, the more overwhelming it seems! I am glad I never tried to be a geneticist!

What am I talking about? The latest information on treatment for geographic atrophy suggests there is another gene being targeted. The gene is C3.

Remember how I have been saying Age-Related Macular Degeneration is looking not like one disease but like a family of diseases? When I followed up with some background research on complement factor C3, I found a list of – get this – over 3 dozen different SNPs that preliminary evidence suggests have a role in causing AMD. Remember SNPs or ‘snips’ are genetic coding errors. Some are beneficial. Some are neutral and some can really screw thing up.

Anyway, it appears there are literally dozens – if not more – of ways we can be ‘wrong’ to get AMD. Right now that means they are working on finding dozens of ways to intervene. May be a panacea sometime in the future, but right now they are nibbling at the problem a piece at a time.

And the piece they are nibbling on now is C3. According to a short article by FierceBiotech, Apellis has finished phase 2 – the proof of concept phase – trials with intravitreal injections of a drug they are calling APL-2. Later it will get a trendy brand name but for now look for APL-2.

BusinessWire identifies Apellis as a company “developing a platform of novel therapeutic compounds for the treatment of autoimmune diseases” so I guess people are coming around to see AMD as an autoimmune disease. APL-2 is described as a complement factor C inhibitor. It “binds specifically to C3 and C3b, effectively blocking all three pathways of complement activation (classic, lectin and alternative).” That sort of sounds like it is suppressing ‘friendly fire’ sooner in the process and may be closer to the ‘one treatment fits all’ that we would like to see. Not anywhere near there, but closer.

The results were very promising. At 12 months they showed a 29% reduction in growth as compared to sham.

But the weird – and great! – thing that happened was this: during the second six months of the study, the reduction rate was 47%! For some reason, the effects of the treatment appeared to be cumulative. Pretty cool.

Now I am not sure what type of genotype you have to have to profit from treatment with APL-2. The researchers are not sure at this point either. They decided to do some searching for genetic markers. Being the suspicious sort, I am wondering if they had star responders and non-responders just like they did with lampalizumab. Would make sense. Why do genetic testing on an ‘n’ of 246 people if you don’t have to? It’s expensive.

And speaking about money, there is a lot of money to be made with this drug. Apellis wants to get APL-2 to market quickly so it can compete with eculizumab, a treatment for PNH, a blood disease. (Apparently PNH is also related to complement factor C). Their competition, Soliris, was predicted to bring in more than $3 billion in 2017. Sometimes a little greed is a good thing! $3 billion can really motivated people.

So, there you go. It seems they have found one more way to save some of the sight of some of the people some of the time. Number two potential treatment for our ‘untreatable’ disease. The wall is coming down a brick at a time. There is hope.

Here’s another article about APL-2 that says “APL-2, a complement C3 inhibitor, has met its primary endpoint in its phase 2 clinical trial, reducing the rate of geographic atrophy (GA) associated with age-related macular degeneration (AMD).”

written August 27th, 2017 Continue reading “Another Potential Treatment”

Keep On Learning

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

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

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

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

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

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

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

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

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

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

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

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

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

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

written August 22, 2017

Continue reading “Keep On Learning”

Caregiver Burnout

Sandwich generation. We used to hear that a lot. Maybe the term is now passe but it can still be a pertinent concept.

Caregivers are often stuck in between. Many of us have children we still need to do for. Many of us are or have been caregivers for aging parents. Then, add an aging pet or two because, don’t you know, Fluffy and Fido are living well into their golden years and need care, too. It is already enough to spin people in circles!

But then what happens when our spouse, sibling, friend has vision loss and needs our help, too? Then things really get interesting!

We have already talked a bit about what we can do to help caregivers. The more independent we can stay by using devices and supports, the better everyone will be. Also, finding additional people to help with some of our needs and reduce the time demands on our primary caregivers is helpful.

But what else can we do? First of all, we can know the signs of caregiver burnout. WebMD has a list. It includes development of a negative or disinterested attitude and a whole slew of symptoms that many of you will recognize as depression.

Caregiver burnout occurs when they are simply doing too much and taxing their resources. Remember, though, the perception of ‘too much’ is always in the eye of the caregiver.

Just because you and I are superwomen and ‘did it all’ does not mean your caregivers are cut from the same cloth. If they say they are burned out, don’t get judgmental; make some changes.

Which brings me to the list of things that can lead to burnout. In addition to role confusion and lack of control, there are these: unreasonable expectations and unreasonable demands.

Hmmmm…. Now granted, the ‘carer’ can have these, but what about the ‘care -e’? Do we ever have some pretty crazy ideas of what we ‘deserve’? Umm, maybe? Just a little, huh? (My mind flashes back to the van rider who kept us waiting outside the restaurant for half an hour. He was disabled and the consensus was he has a feeling of entitlement because of his disability. Therefore, in my opinion, when your sense of entitlement leads you to disrespect the rights of others? Lose it.)

What to do to avoid caregiver burnout is sort of based on the causes. For example, encourage your caregiver to take time for herself. Help her get additional help, including respite care if needed. Also, don’t forget the “God helps those who help themselves” stuff. Use your technology to reduce your dependence.

Encourage your caregiver to seek outside supports. We have talked about the benefits of kvetching. Education and professional mental health services can be very good for caregivers as well. Encourage them.

There you have it, a nod to all those wonderful people who try to make our getting through the day easier. And the most important word in that last sentence? They are PEOPLE. Treat them that way. Continue reading “Caregiver Burnout”

Anticipation

Did some of you read the title and hear the song “Anticipation” by Carly Simon in your head?  Good!

Hey, there! TGIF. Friday evening. I have good stuff on the stove (don’t all fall down in amazement at the same time!). The dog is on day 36 after our being told she was ‘dying’ (maybe she is, but not today!) AND, big AND, I have something to look forward to!

My friend and I have reservations for hot air ballooning! I am excited!

I had been feeling a little bland. Same old, same old. No pizazz, no zest. And, yes, I know I have nothing to complain about because I have a great life, but just the same, even a great life can get a little flavorless.

Then this opportunity came about and we jumped on it. Something to look forward to!

It got me thinking about anticipation, thinking about happiness. Some of the most fun I have ever had has been planning and looking forward to all sorts of experiences. Anticipation can be fun!

I found a post online by Gretchen Rubin. She is reported to be a happiness guru and bestselling author but I never heard of her before. (Sorry, Gretchen. Pardon my ignorance.) Be that as it may, Gretchen wrote on anticipation. She also believes having something to look forward to helps to make a happy life. Gretchen includes anticipation as the first step in enjoying an event.

Hot air ballooning might be inaccessible for many, but what can we almost all look forward to? Maybe you can search for a new hairstyle and look forward to having your hair cut that way. Or, how about going online to look at menus for local restaurants? Plan everything you are going to eat when you go out with friends. If a restaurant meal is not in the budget, look at recipes and find a different way to prepare a favorite food. Search the bestsellers list and decide which book you will be watching for in new BARD releases. Just about anything can be something to look forward to.

Then there is the question: Can people still be happy after vision loss? A post on the Club VIBES website says absolutely yes. The things that allow ‘normal’ people (have you SEEN some of those people??) to be happy are pretty much the same as what allow visually impaired people to be happy: health, friends and family, accomplishments, meaning. The author ends his (her?) page with this comment: Blindness is not what makes people unhappy; it is believing blindness limits your potential.

In other words, happiness is limited because we allow vision loss to rid us of dreams and things to look forward to. But it does not have to be that way. Find something to look forward to. Anticipating good things makes us happy.

written August 18th, 2017 Continue reading “Anticipation”

Time to Watch Some TV

Hi, guys! Lin is crazy busy with all of the new FaceBook members so she asked me to do some work! I have an assignment. Actually, a couple of them. Oy. [Lin/Linda: ah, who started this project, eh? ::grin::]

My first assignment is to put together a page on watching TV. Now personally, I watch practically no TV. TV watching is something I know nothing about.

Like I am not a domestic goddess, I am not an entertainment maven. However, I do a wicked web search, so let us see what the experts say!

First of all, no matter what your parents said, watching TV close to the screen does not – I repeat, NOT – damage your eyes. I have it on good authority, the American Academy of Ophthalmology says so.

What does that mean for you? Move up as close as you need to. Magnification is just about the best thing we can do to help us see better right now and getting closer is a way of making things appear bigger.

And speaking of magnification, Max TV glasses are called Max TV for a reason. They were made for watching television. If I do have something to watch on a screen, this is the way I usually go.

I realize some of this stuff is expensive. I got my Max TV glasses for free. You may have to pay $170 or about a third of that for the knockoff brand. Either of those sums can be prohibitive.  [Lin/Linda here: I guess Sue forgot that she wrote a page called Comparison Shopping where she talks about less expensive MaxTV-like glasses that she found.

The Near Sighted VR app for your Android cell phone magnifies and it is free. I just tried it again with my cardboard ‘goggles’, however, and I still get a shimmer. As motion sick as I can get, I am not doing a shimmer (Shimmy, yes. Shimmer, no). Since downloading the app and trying it on your cell phone will cost you only time, I would suggest downloading the app and trying it. Lin can give us a link to the cardboard box ‘goggles’ that are needed.

Those are your magnification options. Oh, also remember if you need a new TV, get the biggest screen you can afford. Ask the salesperson about good, not famous brand products.  And in this instance, size really does matter!? Oh, my! Did I say that?

Now for this stuff you may need a teen. Preferably a male, but some girls are excellent at this too. Not sure if that is sexist or not. Oh, well… [Lin/Linda: in my household, it is ME who takes care of the electronics…watch what you say!]

Many, many TV shows and movies now come with audio description. I did a couple of pages on this and Lin can provide the links. Pretty please and thank you! Just like closed captions, audio description is embedded and you have to enable that function. Do I know how? Of course not. That is why I would need to borrow a teen from someone. They could do it in 30 seconds. It would probably take me 30 hours!  [Sue’s pages on audio description: Enjoy the Show! and Wanted: Tech Savvy Teen.]

Just some thought about getting more out of TV even when you have low vision. Anyone have any other ideas?

Oh, PS, remotes. Keep them in the same place at all times! Otherwise, your program can be over before you even find the dang thing.

written August 16th, 2017 Continue reading “Time to Watch Some TV”

Fading Into the Woodwork

Just looked at a list of 20 losses that Father Carroll, himself blind, wrote that we experience when we are going blind. Great. If we can’t think of every crappy thing about sight loss, we get reminded of a few we missed! (Although I suspect he is/was a very nice person!) [Lin/Linda: he was, he passed away in 1971.]

The one that struck me as a little ‘different’ from the others was loss of obscurity. Now, we know Greta Garbo wanted to be left alone and we know having the government or the neighbors know every, little thing about you is probably a bad thing, but what does this have to do with sight loss?

Some of us (who shall remain anonymous ?) are pretty good about putting ourselves out there. I, er they, don’t need or necessarily want to blend or fade into the woodwork. But what about those who are naturally retiring? People who don’t want any attention paid to them?

Vision loss makes you noticeable! Some of us can pass for sighted much of the time, but there are those of us who are just too different to do that. There we are: the elephants in the room whom everyone is trying to not stare at but whom everyone knows is there anyway.

When I first lost sight and could not drive, I sold my car to my yogini. We went to the notary public’s office to transfer the title. In the office, I was doing OK, all things considered. People did not ‘suspect’. However, a man guided a woman in dark glasses and carrying a white cane into the room and sat her down in a corner. EVERYONE noticed. She had no hope of obscurity. There was no fading into the woodwork for her.

Thinking about this, I remember some readers/members saying how they struggled with disclosing their vision loss. It dawned upon me what the fear may have been was losing obscurity. White canes and dark glasses do not allow for much lurking in the background.

I have no answers for these questions and I can find no handy dandy post to suggest a course of action. I guess that means just throwing them out and allowing each person to answer for her or himself.

Can one remain unnoticed when she has vision loss and, seemingly, the rest of the world does not? How much anonymity can be expected when you have a disability? Do low vision aids help you stand out or help you blend in? Do we have an obligation to make somewhat of a spectacle of ourselves so in the future disabilities such as vision loss are not seen as strange, but just part of the human condition? Does our right to anonymity outweigh the rights of others to be informed?

Like I said, no answers. None from me. Just questions. Share your thoughts. You can even be anonymous!

written August 14th, 2017 Continue reading “Fading Into the Woodwork”

Did You Drop Something?

Just came from lunch with high school friends. They actually drove 80 miles to visit! Thanks, ladies! Love you!

And that all came about because of a ‘catching up’ email I sent. Moral? Reach out. You never know where one, simple contact will lead. Give people a chance to be kind.

And speaking of reaching out, a reader/member reached out this week. Frustrated by failing vision. Frustrated at how her life has changed. Frustrated by her frustration.

Sound familiar? Thought so. But I don’t want to talk about that?.

The proverbial last straw for our reader was dropping something she needed and not being able to find it. Now this person sounds like a kindred soul. She is inclined to be, shall we say, ‘messy’ and she is also creative. Read some research – like that cited by Clive Thompson in Put Down the Broom…Tidying Up Can Hamper Creativity – and you will see mess and creativity can go together. Our reader/member doesn’t want to give up that part of her personality either. This is even though messiness makes it easier to lose things. But I don’t want to talk about that.

What I want to talk about is finding things you drop. Now that skill is valuable!

VisionAware did a post on Searching for Dropped Objects When You Are Visually Impaired. They suggest you need to remember to protect your upper body. Don’t search stooped over and come up under a lower ceiling, etc. That would be while uttering the memorable phrase “Eureka! Ouch, damn it!” (That is the true quote of Archimedes as he jumped out of the bath and hit his head on a low ceiling. History just cleaned it up a bit?).

VisionAware also suggested listening for the sound of the thing hitting. Soft or hard surface? Things dropped on hard surfaces bounce more. If they are roundish, they roll more.

And may I add, if you drop something and it shatters? Call for back-up, especially if you are like me and ‘shoe’ tends to be a four letter word. A couple of years back I dropped nested, Pyrex baking dishes. My feet were fragged. The entire kitchen was fragged. My husband had to come to my rescue with dustpan and broom. Then off to the walk-in clinic to get glass out of my toe! I tell these somewhat embarrassing stories so you can avoid the same fate.

But again I digress. VisionAware suggests pointing a toe towards where you think the thing dropped and then having a system. Search with your hands in overlapping semicircles. Search with one hand at a time and use the other one to protect and stabilize your body. If searching with hands is not practical (or is dangerous or icky) , use feet, a cane, a broom, etc. The final VisionAware suggestion is to use visual memory of the area to try to decide where the *!#*! thing may have gone. OK, so they did not say “*!#*!”. That was me. You get the point.

And something not mentioned in that post: Be My Eyes. Load it on your phone. Keep the phone on you. After all, you never know when you are going to drop something.

written August 14th, 2017 Continue reading “Did You Drop Something?”

Bucket Lists

I got my “welcome back” letter for school. Trying it one more time…or two. Totally depends upon the eyes.?

Between knowing I go back to full time work in just over two weeks and finding what seemed to be a plethora of articles on ‘bucket lists’ when I was doing some research, I am in “get your butt in gear, girl” mode. Have I done a tenth of what I said I was doing this Summer? Heck, no!

And that is why I have been doing the Susie Homemaker routine today. Yuck. Fridge emptied, scrubbed, refilled. Kitchen floor about a third hands-and-knees scrubbed. A few other, more general tasks done. Break time!!!!!

Bucket lists. I had all sorts of projects on mine for the Summer. My bucket list had a bunch of pesky chores (like shampooing the carpet and wiping down walls) and some fun stuff as well (New York City or bust!) I think of it as a pretty average, Summer list.

Talked to a young colleague who just went through a nasty divorce. She was saying how she missed out on her usual ‘extras’ this Summer. Farmers’ markets, movies, etc. She was busy working out custody schedules and learning how to be a single Mom!

We talked about how that is not uncommon after a ‘natural disaster’. You know, floods, hurricanes, cheating spouses, vision loss, etc. The first thing you do is get your essentials reasonably well together. After that it is fun and dream time!

Maribel Steel covered essentially the same concept in her VisionAware post about her two bucket lists. She called her lists ‘getting through the day’ and her ‘outrageous’ list.

I pretty much got through my ‘getting through’ list a year ago. Assistive technology, transportation, etc. There was a time not too long ago that all I wanted to do was be able to read a bill and somehow get my sorry self to Walmart. It is very possible many of you have those sorts of things on your list right now.

It does get better. It may not always stay better, but it gets better.

Ask for help. Use the resources provided. Learn to plan ahead. Way far ahead. (My one friend and I laugh about how I now could probably plan all of the support services for a major military campaign.) Be flexible. There is more than one way to skin a cat (and WHO exactly would want to do THAT? ?)

Then Maribel has her ‘outrageous’ list. Yes, some of her ideas are a tad out there, but yours don’t have to be. Lots of my second list things are small adventures. For example, a friend asked if I would want to go hot air ballooning at a festival this Fall. Oh, I am SO there! The second list had New York City on it. It had Briggs (blues fest) and the puzzle room. All doable. All done.

Essentially, I see the second list as the list of things you want to do when you ‘recover’ yourself and get back to being you. It reminds us vision loss and all the nonsense that comes with it are not the end of your road, just a detour. And like all detours? It eventually drops you back to pretty much where you want to be. Continue reading “Bucket Lists”

Managing Medications

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

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

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

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

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

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

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

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

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

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

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

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

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

Written August 11th, 2017

Continue reading “Managing Medications”

Fighting the Mess

Morning. I am officially overwhelmed. I have said it before: my life is cluttered. My house is cluttered. Sometimes even my mind is cluttered. On one level I realize this is not good for someone with visual impairment. It means I lose things. Lots of things. More things that I ever used to lose.

On another level, dealing with the mess can be just plain overwhelming. I don’t feel like tackling it. Sometimes it is a lot easier to buy new or do without.

Generally, the mess wins no matter what I do.

This morning things reached critical mass – again – and I figured I had better do something about it before it blew up. Parts of my half-hearted effort were to sort laundry and get rid of articles I had printed out but never written a page on.

Laundry and vision loss articles…they may not be two great things that go great together, but one of the printed out articles I found from VisionAware was about blind people doing laundry.

Does that freak you out a bit when things come together like that? That cosmic convergence stuff? Does me.

Anyway, laundry is not that hard for me. I keep the setting the same (except for delicates) and stick a finger in the measuring cup to make sure I don’t run the cup over with detergent. Then I wipe my hand on a piece of clothing so I am not all detergent-y. If I have to change the setting, I use a light to make sure it is right. My handheld reader has a light and that works well.

What I liked were the suggestions they made for ironing. I admire you people who are organized enough to get things out of the dryer and hang them instantly. I know this avoids a lot of wrinkles. I am great for leaving the house with the dryer running or going to bed with it on. Clothes have sat in the dryer for days. Meaning? I iron every morning.

VisionAware has some really good ideas. Since we all know contrast is a good thing when you are low vision, having a solid color ironing board cover is good. They also suggest you get a heat-treated pad to set your iron on when you are moving the clothing, etc. That will allow the hot part to be down and you don’t burn yourself when you reach for it.

Those are the two things you might have to purchase. Ideas that involve things you probably would not have to purchase include using a funnel or a turkey baster to put water in the iron. Personally, I just use an old Febreze bottle and squirt things. Marking the proper setting so you don’t scorch things can be done with that raised marking stuff or even nail polish. [Lin/Linda: When Sue says ‘raised marking stuff’ she means using tactile pens.]

The last idea I liked was finding the iron by grabbing the cord first. If the contrast of the cord with everything else is poor, tie a ribbon on it! After all, safety first.

OK, back to the fight. Personally, I think I am going to lose again.

Written August 6th, 2017

Continue reading “Fighting the Mess”

Put the Savor Back in Life

As my father got older I really started to worry about his nutrition. Left to his own devices Daddy would prepare a lunch of canned peaches in heavy syrup, a couple of cookies and a bowl of ice cream. It was like dealing with the tastes of a six year old! Sugar, sugar and more sugar!

I eventually learned taste loss comes with old age. Since sweet is the last flavor we can still taste, many of us go to a high sugar diet. Not all that great.

Lost of taste is just one of the sensory losses we experience. Science Digest in February of 2016 ran an article reporting 94% of older Americans have at least one sensory loss. 38% have losses in two senses and 28% have three, four or five sensory losses. Some of these deficits were mild but many of them were serious. The study found 64% of their sample ages 57 to 85 suffered with a significant deficit in at least one sense. 22% had major deficits in two or more senses.

Yikes! This is scary stuff!

Sensory loss takes the savor out of life – literally. It is one of the main reasons people may report a reduction in the quality of life.

Alright, now that we have had the stuffing scared out of us, what can be done about this? Most sources suggest getting any potential sensory loss evaluated medically. Some sensory problems cannot be treated but there are some that can.

Just because some of us have a vision loss that is currently not treatable does not mean the same holds true for other sensory loss. Don’t be fatalistic! Go for help.

Then, of course, there are rehabilitation services. I would like to say rehabilitation services and assistive technology is universally available, but I know better. If you cannot get services funded, use resources such as this website. We regularly try to find things that are free or relatively inexpensive that can help you cope with your vision loss. I expect there are websites for hearing impaired although I am less optimistic about sites on taste, smell and touch loss.

And speaking of smell and taste loss…

In Betrayed by our Bodies – Sensory Loss and Aging Dan Orzech suggests the use of odor detecting technology so we can avoid burning up in a fire (smoke detectors) or being asphyxiated by leaking gas.

Orzech suggested using a little butter or gravy to make the odor and flavor of food more chemically available. (A man after my own heart!). He also reported dehydration can make it harder to taste so make sure you drink your fluids.

Although not being able to see colors well is a hallmark of AMD, do what you can to make foods bright, colorful and visually appealing. Intensely colored foods are rated as more flavorful that dull colored foods.

Given the number of readers and FaceBook members we have, I would suspect more than one or two of you are experiencing multiple sensory losses. Don’t ignore them. There really are ways to put some of the savor back into life!

Written August 4th, 2016

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Behind the Wheel: Part 2

continued from Behind the Wheel: Part 1

In talking about why Yvonne drove after three years, she mentioned independence. Speaking personally, I would love the freedom of driving. The shared ride service here is a pain. The other night I was picked up at the Y and had to ride along to a local restaurant. We waited half an hour for the second passenger to get his ‘stuff’ together and get it on the road.

You have heard me scream plenty about rolling out of bed at the crack of dawn to get 10 miles down the road ‘only’ an hour early.

Unfortunately, shared rides come with many indignities and inconveniences.

Right now I have started ‘jonesing’ for a chocolate milkshake. The drive-in restaurant is only a mile away but it is on the other side of a busy road. I’m thinking that trying to get across that road for a milkshake – even a large! – may not be a good idea. Shared rides and going by foot may not leave a lot of room for spontaneity, either. (Yes, I do have a husband. He is dieting!)

I would love the freedom of driving. After all, this is the woman who renewed her license so she could feel like a big girl! But I don’t drive. The eyes in this head are too far gone.

Yvonne did her homework. Good idea. I did my homework for my bike riding. I know my routes pretty well. Today the Children’s Museum next to the Y had a street fair. The road was blocked. Detour ahead! On my bike, I just dismounted and walked through the fair. In a car, I would have been rerouted to a road I rarely travel. Things happen. The best laid plans of mice and men and all that. You cannot always count on doing what you planned to do.

Yvonne mentioned problems with family members using the car, not transporting her and not doing basic maintenance. Without the family members she is on her own. Maintenance? I used the same garage for nearly 40 years. I think if I asked, they would have come for me. I find it is always good to inquire. You don’t know what people will do for you until you ask.

My license has not been pulled. A few weeks back I went and had it renewed. No one questioned me. No one threw me behind bars. I can legally drive but I don’t.

Many states are not good about making sure people who should not drive don’t. And even if they pull licenses, the roads are full of unlicensed drivers anyway. Driving or not driving is the decision each of us must make for himself.

Would I ever drive? Perhaps. With a very sick husband or a very sick dog or if I had fewer resources, perhaps. I have said it before: I am blessed with resources. What would I do if truly stuck? Dunno. Maybe, but right now, my answer would still have to be no.

But what did the Yvonne do?

written August 6th, 2017

Continue reading “Behind the Wheel: Part 2”

BlindSquare App

When I was at the Summer Academy a couple of people mentioned they were navigating with an app called BlindSquare. They asked if I used it and I was almost sheepish to admit my vision is still good enough to navigate with plain old Google Maps.  It is surprising how social norms change from place to place.  I felt like being blinder would have given me more ‘street cred’, but what the hey, I got by.

BlindSquare appears to be the app VIPs (Visually Impaired Persons) in the know use to navigate. According to its advertising BlindSquare is the “world’s most popular accessible GPS-app developed for the blind and visually impaired.” It is said to describe the environment, announce points of interest and also alert you to street intersections as you travel.

The home page says BlindSquare is self-voicing and has a dedicated speech synthesizer, whatever that means. There is an audio menu that can be accessed with the buttons on the side of your phone. Seeing the screen is not required.

BlindSquare announces your progress towards your destination. It marks your spot (sounds like Beastie Baby!) and can lead you back should you want to return. The app opens with voice over. BlindSquare ‘understands’ a variety of languages. These include many of the most ‘popular’ European languages as well as some others like Finnish and Romanian. The farthest east they go looks to be Turkish. The farthest south they go looks like Arabic.

Reading the comments it seemed to me the developers of BlindSquare are awesome people. They responded in the affirmative to just about all of the suggestions and have been adding languages right along.  Updates are added regularly.

Now for the bad news. BlindSquare is $40.00 in the App Store. There is a free version called Blindsq Event  available in the App Store but it is seriously pared down from the for a fee version. The pay version featured three or four pages of options and Blindsq Event featured one. I would say what  do you want for nothing, but my answer would be ‘the World!’ so I know better than to ask that question.

I just downloaded the free version and will play with it later. As always, I would love to have others’ opinions. Please download it and let us know what you think.

Those who have the pay BlindSquare, please chime in!

written August 2nd, 2017

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The Proper Magic Potion

Hi, home from physical therapy. My physical therapist and I looked all through the offerings of a world-famous corporation – gee, what could that be? – and picked out a new cart for me. See how this one works.

I came home from Penn State with my rotator cuff tendinitis flaring again. I had hauled my rolling crate around with some of the travel being uphill. Apparently not a plan. Not only do we become pack mules for all of the vision related stuff we get to haul around, we also get to have pack mule injuries!

How do other people handle the problems of – well, freight? Does anyone walk to the grocery? How do you haul everything? Any great ideas on carts?

I looked online for ergonomic carts and dollies and what they are showing is similar to what I just ordered. I will let you know if the new one is any better than the several I have purchased over the last year and a half.

FYI if you know someone who is mechanical and want to make some money, ask him (or her!) to design a rolling crate that can take punishment and not fall apart in three months! Not only would I buy one but I know several teachers and therapists who would also buy one.

That is the practical part of this page. Now for the not so practical but sort of cool part. Anybody ever read H.G. Wells The Island of Dr. Moreau? In that late 1800s science fiction novel Dr. Moreau creates human-animal hybrids using vivisection. Nasty business.

Today scientists are much more efficient than what Wells imagined. Today if scientists want a fish-mouse hybrid, they do it at a genetic level.

Madness, you say! (Cue demonic, mad-scientist laughter). Whoever would want them to produce a fish-mouse hybrid? Well, maybe you would.

Zebrafish are cool. They can regenerate parts. Put zebrafish genes in mice and they can regrow parts, too.

The parts the scientists are growing in mice are glial cells. The scientists have prompted the glial cells to become functional interneurons in mouse retinas.

Interneurons are connecting cells between other nerve cells. Remember I told you they are able to grow photoreceptors in eyes but cannot get them to connect? Interneurons are connectors. They receive and process signals from the rods and cones. With the proper magic potion for the job, scientists got adult mice to grow interneurons in damaged eyes. And the best part of all? They conducted signals!

This research was just published in July, 2017. It’s very early days and they have to work out many bugs, check for safety, etc. but it is the first step. Maybe some day they will inject photoreceptors into your eyes, inject zebrafish genes and magic potion, all over your lunch hour. By the end of the week you will have grown those new photoreceptors AND hooked them up to your optic nerve. Wow. Science fiction becomes science fact.

If you want to read the short version of the research findings, I found them in the ScienceDaily post. The date was July 26, 2017.

written August 1st, 2017

Continue reading “The Proper Magic Potion”

Talking to Your ATM

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

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

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

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

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

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

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

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

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

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

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

written July 30th, 2017

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Centers for Independent Living

Moving right along, promised you a page on the Center for Independent Living. Let’s do it!

As Virgil’s (sweet, lovable guide dog that he is) Mom was telling me, Centers for Independent Living (CIL) are pretty much all over in the United States. At Virtual CIL you can click a state and a list for that state appears. CIL does appear to be international at least on a small scale. I found one in Dublin, Ireland. Where else? No clue. My browser keeps routing me back to local offerings. Too much like work to try to find many more. Check under Center for Independent Living in your area.

Centers for Independent Living are often funded by government rehabilitation agencies. However, I was told they do have some discretionary funds to use with those who don’t qualify for government funding.

CIL offers peer counseling from people who have practical experience living with your disability. They also offer advocacy. Although they work to support legislation for disability rights and teach self-advocacy, they provide more practical support like helping clients get better transportation or housing as well.

Skill training is a big part of CIL according to the websites. They are reported to not only run educational programs to help people DIY but also to help find trustworthy and reliable caregivers and even financial advisers.

Under the heading of information and referral, they list a variety of things. It sounds as if they may have speakers. Referrals to specialists and suggestions for home modifications and adaptive equipment are likewise within their purview.

Other services? They have LIMITED funds to do basic structural modifications that will allow you to continue to live at home. We are talking things like lowering a section of counter if you are wheelchair bound, not renovating so you have a state of the art, gourmet kitchen.

CIL also offers an awareness program so young people and other, similarly ignorant folks can experience ‘having’ a disability. There is disability sensitivity training – although I daresay one of the camp kids I met had some of the BEST, semi tasteless blind jokes ever! – as well as Americans with Disability Act compliance training for employers and training for firefighters and other emergency responders on how to rescue us – and deal with us! – if need be.

It does sound as if Centers for Independent Living can be a good resource for us who need just a little extra support and knowledge to make it happen as VIPs (visually impaired persons). Of course, like everything in life, individual results may vary. There are dozens of these centers and I would suspect quality of services is not the same everywhere. What I know I learned from a CIL employee who is proud of the job she is doing and a web page or two. Go check it out and report back. Your experiences cannot help others unless you report them. Here is your forum.

written July 30th, 2017

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Take the Bus

Back home from Lion Country! Nittany Lions, that is. We are Penn State! and all that. I rate the overall trip as a success. I made a few contacts and got some ideas.

The more I heard about what the kids were doing the more I thought we need a similar program for adults. How to use an ATM, do laundry, cook, use a long cane, technology…!

Just found an article on ATM use. Will write that up soon.

This morning I got the courtesy shuttle to the bus station. The bus trip was uneventful. Do I like riding the bus? No, but one of these days it may be necessary and I should have the experience.

The woman I was speaking with at the Summer Academy  (Virgil’s Mom! Did I mention I fell in love with Virgil?) said she has had mixed experiences with bus riding. The driver was nice but she was treated shabbily in the station at her destination. She may not even have light perception so her challenges are greater than the average person with AMD, whoever that might be.

Just the same, sometimes people can be royal pains. Make sure you have a few numbers to call in a crisis.

I did not ride with Greyhound but VisionAware did a piece on traveling on Greyhound (and other providers) a bit ago. They provided a number: 1-800-752-4841. This is the hotline for Greyhound. They like you to call 48 hours in advance of your trip.  If you have special needs, they prefer to know in advance. Reasonable, I think. I don’t like last minute complications either.

Remember you also need to be reasonable in your requests. Things like help finding a seat or the bathroom are within the realm of acceptable. If you are not getting even that modicum of consideration, I would expect that number also takes complaints.

Would I take a bus again? Yes, if it were my only option.  I would have to chose carefully to avoid the ‘milk run’ and hitting every village and crossroads along the way. I am just not that patient. This combination of public transportation and ‘Hubby Trailways’ transportation system worked out well.

The times I have been in England we were either driving (God bless us!), in a tour bus or on the trains. However, Britain does have a bus system. In British city transportation systems, stops are announced over the public address system, after which my first reaction was always to turn to a native and say “Excuse me. What did he say?”  Inelegant, but it got the job done.

Britain is not only supposed to be in the process of introducing free bus passes to those over 60 and those with disabilities (most of us on both points I would suspect) but they are also introducing a talking sign system. This is among several, other changes meant to make public transportation more accessible in Britain. See Jonathan Webb’s Bus Travel and the Blind or Visually Impaired for more info.

And FYI for you dog lovers, the Beastie Baby is now two days post when the vet expected her to live. Knock wood, cross fingers, cross toes, cross eyes. She still has not gotten the memo about her impending demise and we are not telling her!

Enjoy your evening!

written July 29th, 2017

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Personal Appearance: Part 2

Hi, back at my room at the hotel.  There were a number of speakers at the closing ceremony. You know how those things go. I did discover that the head guy in the Bureau of Blindness and Visual Services and his boss, the head guy for the Office of Vocational Rehabilitation, both have very significant vision losses.  They were both there to speak.

My GPS found the art gallery easily. Unfortunately it was closed for renovations. Something for next year, assuming I am invited back, of course.

I also walked to the creamery without incident. Yum! That was lunch.

My GPS let me down when I was trying to get to the arboretum. It walked me two miles out of my way! Meaning I had to walk two miles back.  

I guess the lesson here is to augment any machine intelligence you are using with some ‘humint’, or good old human intelligence information gathering. In other words, ask.

On my way back to the arboretum I walked myself into a tummy ache and needed an emergency potty stop. I asked one of the construction guys for the location of a restroom and was offered the use of a Job Johnny!  Yes, please. Once more I sing the praises of the kindness of random strangers. Any Porta Potty in a storm! [Lin/Linda: she made me add that last line! ::groan::]

Once I got there the arboretum was great. I would have liked to have used my monocular to look at a few things better but it had condensation inside of it.  Not totally sure what happened there. Probably need to bake it in the sun to dry it out.

written July 29th, 2017

Continue reading “Personal Appearance: Part 2”

Personal Appearance: Part 1

As I am writing this I am sitting on the campus of Penn State University and waiting for the closing ceremonies of the Summer Academy. My adventure is half way over! [The Summer Academy was sponsored by the Pennsylvania Office of Vocational Rehabilitation.]

So far the most stressful thing of the whole event was realizing I half read the calendar wrong! I was thinking Career Day was Friday but in actuality it was Thursday. Gads! Fortunately my husband was able to get me to the campus in plenty of time.

I had hoped to have time to network but I only really spoke with one service provider, a woman who told me about the Centers for Independent Living, and her beautiful, sweet guide dog, Virgil. OK. That was two service providers but Virgil was not very helpful at providing information.

I promise to look up centers for independent living and write a page on that soon. And FYI, this woman is totally blind and working full time. Can be done with the right tools, skills and attitudes.

And speaking of totally blind, most of the kids are not. Totally blind that is. Many of them are congenital glaucoma or things I had no idea what they were.  Many causes and one result.

I met one kiddo with Stargardt’s Disease. Remember that is the early version of AMD. I promised him he would see someday. If there are any researchers out there, try to make sure I was not lying. I have faith I was not.

Anyway, for the most part, amazing kids with amazing attitudes and some of them have amazing plans. I met one who was depressed and fearful in the face of vision loss. Pretty good ratio. We grow ’em strong in Pennsylvania.

The presentations were small group. I never had more than three at a time and we got to chat. Not at all stressful or terrorizing.

I was able to walk to the hotel and, after checking out the downtown, spent a quiet evening with my BARD book. This morning I got up and wandered until I found a convenience market for breakfast. Then I set my GPS for the bus station. I needed to find it and confirm my information.

I don’t know about you, but I am horrid on directions. The only place I can quickly point out northwest or northeast is standing in front of my childhood home. Beyond that, clueless. I walked around in circles a few times but I did manage to walk across campus and find the venue for the closing ceremonies. Next I want to find the art gallery, the creamery and the arboretum. Wish me luck. 

Visual impairment on top of directional impairment can be, shall we say, interesting.

Tomorrow I can get a shuttle to the bus station and after that the real adventure starts. I have to admit, I am cheating. I am taking the bus slightly less than two hours and then being picked up. I have trouble spending seven hours in transit for what should be a two hour straight shot. Call me spoiled and I will agree with you. I am not doing it just for the experience. I already know it would stink.

So far my first adventure away by myself has been pretty good. Not sure now what I was anxious about. It has also been my first foray into “the land of the blind”. (How do you like that for dramatic?) Not all that nerve wracking either. Hoping to work some of the connections and pull some of the strings I now have. See where they lead. Maybe I can find some info for a page or two.

Gotta go. 15 minute until the ceremony!

written July 28th, 2017

Continue reading “Personal Appearance: Part 1”

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

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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

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Overcoming Uncertainty

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

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

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

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

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

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

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

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

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

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

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

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

Know the Terms

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

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

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

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

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

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

But I digress. What are the proper terms anyway?

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

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

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

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

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

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

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

written July 22nd, 2017

Continue reading “Know the Terms”

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