Tips for living with low vision – Page 7 – My Macular Degeneration Journey/Journal

Be Safe!

We had a little adventure today. While my water was boiling for tea I went down and lay a fire in the wood stove. The first thing you know, the basement was full of smoke! I cut off the oxygen to the fire by closing the door and the vent. Then we dug the wood and ashes out of the firebox and threw it all in the yard. Then we called the chimney sweep.

Community service announcement: if you burn wood for heat, please be aware of the possibility of chimney fires. They roar like a jet plane and the wall gets hot. You can lose a house to a chimney fire. In order to prevent them, have someone do regular chimney cleaning. (I know a lot of you know that, but there might be one…) if you suspect you have a chimney fire, get all people and pets out of the house and call the fire department in that order.

After airing the place out (I still smell like I have a three pack a day habit!) I started to wonder about fire safety for the visually impaired. Web articles told me about a five-year old who led her blind grandmother out of a fire, a legally blind lady who rode her scooter out of a fire and a blind person who was saved by a dog.

No five-year old, no scooter and the Beastie Baby would be hiding behind the furniture so I guess it would be up to me.

The Fire Safety and Disability Guide says it is harder for the disabled to escape fires. They also said disability makes it harder to take preventative action. Duh. After stating the obvious, the guide states some more stuff that should also be obvious but bears repeating. Things like being careful around heat sources and both having and practicing an escape plan. Remember to also have plan B. If you have a fire, “get low and go!”

Smoke alarms need to be in working order, too. There are high decibel alarms available that pause between alarm cycles so the visually impaired can listen for the location of the fire and/or for instructions from a rescuer.

After getting to safety, let people know where you are. Secure your service animal. Even the best trained animal can become lost in the chaos of a fire.

AgingCare also published an article called Fire Safety for Elders with Special Needs. That article suggests tactile markers be placed near the floor so the escape route is marked as you crawl under the smoke. Good idea; I think.

We got off easily. For the price of a cleaning, we seem to be in good shape. Please be aware of fire hazards and take precautions. Make preparations just in case. If you need the battery changed in a smoke detector or an escape route marked and cannot do it yourself? Call the fire department. There should be someone able to do it for you. Take care!

Continue reading “Be Safe!”

A Day in the Life

Hello. Lin told me she has a number of new people in the Facebook group and that many of them may not be aware of the variety of assistive devices available to those of us with vision loss. Lin suggested I review the things I have and use in a typical day. I will do this here. Some things to keep in mind:

Please read with the understanding this is a cursory review only. More information is available in past pages. I will remind you how to search our website at the end of the page.
Also, I’m not specifically recommending anything since choosing these devices is a very personal thing based on the status of your eyes and what you want/need to do with the vision that you have. What I use was selected for me by the counselors with Pennsylvania’s Office of Vocational Rehabilitation (OVR) Bureau of Blindness and Visual Services (BBVS or BVS) so that I could continue to work.
We don’t get any money or services for what we include in my pages.

Here goes…. A Day in the Life

Disclaimer: I am not recommending any particular service or project, just reporting on what works for me.

One option for a low zinc AREDS2 supplement. — One option for AREDS2 supplement

Today is Sunday so I can afford to be a tad lazy. When I get up I take my medication including my low zinc AREDS2 formula vitamins. There is not much help from taking these supplements in the advanced stages but the minor disease slowing they found at other stages is better than nothing if they do occur.

one source of low vision aids

Being the dutiful granddaughter of Welshmen, I have toast and tea (with milk, of course!) for breakfast. Simple preparations do not require great accommodations. However, if I were ‘Becky Home Ecky’, I would own all sorts of nifty, kitchen gadgets from the MaxiAids catalog.

Since it is Sunday, I grab my iPad Mini and plop down on the couch. My iPad has been my salvation. I can check my email by using the pinch and zoom feature. I also have larger text turned on. If you go to settings – general – accessibility you can find a dozen other things that may be helpful.

Apple App Store

My Vision Rehabilitation Therapist (VRT) Blindness and Visual Services literally stuffed my iPad with apps. The ones I actually use are Magnify and Freeze and a large button calculator. It is also sort of fun to demonstrate the wonders of technology to people using the KNFB Reader. There are about a dozen others on there. Some of them are for people with much worse vision than mine at present. Hope for the best and prepare for the worst; you know. Today I have been carrying my iPad around while I do chores. I am listening to an Agatha Christie novel on my BARD app. Hercule Poirot is such a clever, little man.

ipadtotv — iPad screen bottom left of photo, enlarged onto TV

I can plug my iPad into the TV so that I can see everything on its screen. I don’t use it much since I can use the Zoom feature on the iPad. Click here to find out how I connected them.

Since I start teaching again on Wednesday I have my portable CCTV setup which is the MagniLink Zip 17 (photo on left). That way I can review my notes and actually be able to see them! If the CCTV breaks (bite my tongue!) I can always fall back on the iPad with Justand V2 (photo on the right).

I’m going to need to put together an outfit to wear but I need extra light to make sure I’ve got the color right. I put my little Ott flip light on the “ironing board in the bedroom to help with that. I also have an Ott floor lamp in the bedroom for extra light. I can put the little Ott in my purse if I need extra light to find something.

Speaking of my purse, I carry my iPad Mini, Smartlux reader and MaxTV lenses in my purse.

We did not go out to lunch today but if we had, I have my Smartlux reader/magnifier in my purse to read menus.

Glasses to cut down on glare — NOIR glares glasses

Later when I take the Beastie Baby for her walkies I will have my glare glasses on and my monocular around my neck. Since the old darling and half of the other dogs get to run off lead at the dog park, it is good to be able to see which of our friends is across the field.

Sue's Telescopic Glasses — Max TV Telescopic Glasses

This evening if I want to watch TV, I have my Max TV telescopic glasses. I use those to do classroom observations at my school job. The little kids like them because my eyes look huge when I wear them. They can be handy in a store when I’m trying to find something.

Those are the basic, low vision tools I use at home. If this were a workday I would also tell you about the zoom text app on my work computer. Absolutely essential if you are using a standard PC.

Hope that quick review helped. Don’t give up hope. With technology, things can be a lot better. Remember, comparatively speaking, you are losing your vision at the best time in history thus far.

If you want to review the pages where I talk about these devices, you can use the 3 ways to search our website: 1) search website; 2) categories and 3) tags/keywords. You can find these either in the right-hand column or at the bottom of the page.
Continue reading “A Day in the Life”

Retiring Minds Want to Know

Richard Eisenberg is the money and work editor for Next Avenue. He wrote about how work defines and gives purpose. He wrote about the stages of retirement.

The honeymoon period may look like one long vacation. No demands. No deadlines. Doing pretty much what you want to do. Problem becomes that the old lady in the ratty jeans and equally comfortable t-shirt does not radiate the presence of the lady in the business suit.

Not getting the same reaction from people can make you wonder who you are. Enter some anxiety and maybe a little depression. At minimal there could be an existential moment: who am I now?

The need to fill probably ten or so hours a day that never needed to be filled before becomes a real burden. If forced out by disability, the condition you had developed an uneasy truce with becomes the target of anger and resentment.

So what are the alternatives to being adrift on a sea of endless, uncommitted time? Back to the job market? Every post I have read suggests it. Part-time. Reduced demands on your areas of weakness (for us, read ‘not a lot of close vision work’). Again, if you liked your job, something in a related field would be good. Otherwise, follow a passion.

Every post I have read suggests following passions and developing dormant talents, too. Sounds like a good idea so I will suggest it as well. To follow my passion I have thought about volunteering for the local animal rescue group. Excellent vision not required for shoveling poop and walking pups. These pages are also something I would like to keep on doing as long as I am able.

And here is the classified ad: we are still very open to the idea of guest writers, both professionals and those with personal stories to tell. Contact Lin. The usual stipulations, we reserve the rights to not publish, to edit, etc.

Back to the regularly scheduled programming:

To paraphrase Barbara [Streisand] “People who need people are the happiest people in the world”. The posts all suggest: if you have relationships in your life, cultivate them. If there are no people in your life, go find some. If you cannot find anyone to put up with you? Get a dog! Beastie Baby is #7 and I have never had a bad one. (Although they have had their moments. I remember chasing Augie down the road with a piece of kindling wood after he growled and snapped at me. We came to an understanding with no blood shed by either party!)

And for the really powerful? What does Eisenberg suggest for when type As retire? Well, although he does not use these words, apparently developing a social network of ‘big names’ might work.

Sounds like name dropping may let you feel you have maintained your status!

He also suggested adding stress back into your life. There are those of us – like yours truly – who thrive in the chaos. Build in some crazy goals and go after them!

Sounds pretty basic. Probably nothing you did not already know. Now we just need to remember to practice them. Good luck creating the new you! Continue reading “Retiring Minds Want to Know”

Growing Younger

I would imagine many of you living in the States belong to AARP. I will put a plug in for them here. Membership is cheap and you can get that back on their discount program very easily making the magazine and the good information there pretty much free. After my father retired we got one of their medical insurance programs and it worked out nicely for him. Not free, of course, but it was a good deal. Click here for their Membership Guide.

Again, we get no monies from anything we talk up but we would like to! We do have scruples and won’t say nice things about anything we do not personally know. Occasionally I will include what I have heard but hearsay is marked as hearsay.

So much for the disclaimer. AARP magazine for October/November 2016 has an article about growing younger. It is based on a book by Chris Crowley and Henry Lodge. The article hits the basics. You know the fitness four (strength, endurance, balance and flexibility), healthy eating, social connectedness and meaning in life, although they do not use the same words. Looking through their section on meaning, they call it nurturing your inner life, I noticed #5 which said “get over yourself”. Oh, my. [Lin/Linda here: I can’t connect to the article, you have to be a member to access the magazine. For a look at what is in this issue, click here.]

The point they make is you won’t be the hotshot_______ when you retire. That identity goes away. You have to be prepared to lose part of your self. Crap.

I have been in my profession for 39 years. Who am I? I am a psychologist. The idea of giving that up voluntarily is one thing but the idea of being forced to give it up is almost traumatic. OK. Maybe it is traumatic. No matter what words you use, it ain’t good. Maybe I should start looking at some stuff about retirement. Maybe get a little more comfortable with the idea?

US News had an article that talked about 12 ways to survive an early retirement. It is a more practical article but does have some information that might help emotional coping as well. I want to do this article for this page and go over another article on coping for another page. Hope that’s OK.

The article said 45% of people retire earlier than planned. I guess if misery loves company, when the time comes (probably not at 70 as I had planned), that little fact should give me some comfort.

Getting forced out of a job is sort of normal. It is not me (or you either).

If you can get a job, get a job. It does not have to be in your field. A related field would be nice, but not necessary. For example, my specialty has always been assessment but administering and scoring tests has gotten harder. Plan B is to do more counseling.

Try to cut expenses. I have heard of some people who ‘practice’ living on what they will have after they retire. If you can get an estimate of what you will have, that may be helpful.

If you can, postpone filing for Social Security. If you file early, benefits will be a lot less than they would have been if you waited until your full retirement age. Waiting until 70 to file will increase your benefits even more. Since I plan to live to a ripe old age, my thought now is to collect school disability retirement, work as much as I can and fill in the gap by tapping savings. Of course, since I should be eligible for Social Security Disability (SSDI), I will want to investigate that before making a final decision. Seeing a financial consultant early will allow you to crunch the numbers and see which will be to your advantage.

There are several more suggestions in the article. I took the ones out that ‘spoke’ to me. I would refer you back to the source for the rest. Continue reading “Growing Younger”

Blind Hunters?

I am not a killer. Years ago I accidentally ran down a coyote and I cried all day. I only kill insects in retaliation. They attacked first! You know their kinds: ticks and mosquitos and deer flies that feel like they took a pound of your flesh when they bite. All others I try to usher out the door.

So why is one of my favorite smells in the world gun-cleaning solvent? Why am I writing this page?

No matter how much education I have and no matter how many countries I have traveled in, at the core I remain the daughter of a backwoodsman. For my entire childhood I spent late afternoons for the first two weeks of December sitting in the window waiting for “the men” to come home from the woods. My first question was always “Did you get anything?” It was buck season and my father, grandfather and two uncles stayed at our house for most of the time. Our little suburban home became a de facto hunting cabin.

I had a BB gun range in the basement. I shot a .22. However, I cannot say I ever had the desire to hunt animals. Although I know a number of women who do hunt, it never appealed to me to kill anything. Had I been a boy, however, I know I would have been acculturated into the sport.

In real time it is now November. It is the time when many rural men young and old start spotlighting in fields and dreaming about bagging a trophy buck.

Believe it or not, people with all sorts of handicaps hunt. This includes the visually impaired. I remember years ago we had a special education student who was blind and his father wanted him to take the hunters’ safety class.

We thought he was crazy but apparently the man was not as crazy as we thought! Some states will license the visually impaired to hunt.

I was not able to find information for Pennsylvania but Iowa, Michigan and Texas all allow the visually impaired to hunt. Other states don’t have statutes against it.

How does this work? I mean really? I would not want to be down range of a blind person with a gun.

Some states require the visually impaired hunt with a sighted partner. There is historical precedent for this. The best of snipers have ‘hunted’ with a partner/spotter. I cite Vasily Zaytsev and his partner, Vladimir Filatov as my examples. (And no matter what you may have thought of the Russians over the years, I offer the people of Stalingrad as an example of true grit and endurance. They lived through hell. Comparison skill.)

But I like history, so I am off on a tangent again. Hunting with a sighted partner, yes. But even when hunting with a sighted partner, blind hunters apparently also use auditory clues. Carey McWilliams (BBC News, August 13, 2014) says flocks of ducks overhead sound like bicycle tires on pavement. Who would have thought it?

Others, like Steven Johnson in How Do Blind People Hunt? 10/30/2011, advocate the use of technology such as laser sights. Johnson backed legislation to make laser sights legal in his home state of Wisconsin.

Like I said when I started this page, it is not in my makeup to kill anything. If I had to live on a farm, I would be vegan. I do, however, appreciate the hunting tradition and culture. It is part of my heritage. (Also, hunters are some of the most vocal and dedicated conservationists I know, but that is another page).

If hunting is part of your life, too, there are ways to still get out there and participate. I will back your attempt the entire way. I will be the one standing behind you! Continue reading “Blind Hunters?”

I’m a Big Kid Now

My Blindness and Visual Services (BVS) case manager came to see me today. I am now officially a closed case. We reviewed everything I had gotten so far. Technology? Yep. Habilitation? Yep. Mobility? That, too.

I am not a candidate for vocational assessment, counseling or job placement services, although they do offer them. As a matter of fact, my case manager is looking to see if I am on the provider list for those services. Should be. I have done the job before. Now I just have a slightly different perspective on the issues. ::grin::

My case manager wanted to know if he could submit my name as a possible speaker at the Penn State Summer Academy. Sure. What’s that?

The Penn State Summer Academy is a program at the university that prepares high school students with visual impairment for college. My case manager thought I should go to show them visually impaired people can function as psychologists. Apparently they have a speakers’ panel, but the Summer Academy offers a lot more than that.

According to their website, the Academy offers training in travel skills, self-advocacy and networking, career awareness, social skills, enhancing access technology skills and low vision rehabilitation. They also have counseling groups to discuss fears and other issues associated with going out into the world and team building strategies. The website video shows kayaking, wall climbing and high-ropes courses! In short, in their words, the Academy teaches its students to believe in their ability to succeed through all sorts of experiences.

The Academy is three weeks in the summer. It looks like it functions as pretty much a summer camp with a serious purpose.

I don’t know what you may think, but if they start one for us older folks, I want to go!

Another thing my BVS case manager suggested is I start going to trade shows. Apparently trade shows are good ways of finding out what is new and exciting and what gadgets you want to help to improve your functioning.

Now I cannot say that I find that a great way to spend my vacation, but it might have its appeal. The International Vision Expo and Conference is at the Sands in Las Vegas in September, 2017. SightCity Fair for Blind and Low Vision Aids is in Frankfurt in May, 2017. The thought of cruising on the Rhine in the spring does stir some interest in me.

Of course, if I don’t want to go that far from home (and who said I don’t?), I can always go to a show by Freedom Scientific. They show all over the U.S.

In short, moving into a new phase of my life as a person with visual impairment. Time to start providing services instead of receiving them. Time to start finding and evaluating my own toys. (Also time to start paying for them!) How soon we ‘grow up’. I guess I am a big kid now. Continue reading “I’m a Big Kid Now”

Wake-up Call

My parents stopped learning about finance and estate planning sometime around 1960. They paid for their house, kept the bills low, wrote a basic will and figured they would have about $70,000 in profit sharing plus social security to live on. Bases covered; right?

Oh, so wrong. Daddy retired early at 64 to care for my mother who had multiple physical and mental health issues. After a stroke at 67, my mother spent 14 months in a nursing home before her death. The nest egg was cut in half for the nursing home and several thousand more was spent on the burial.

Then my father – who was sure he would die in his mid-70s just like his parents – surprised himself and died a month shy of his 87th birthday. Need I say that when I took over his finances things were a bit of a mess?

A September, 2014 report on money and people with disabilities reported 30% of the disabled have a “very difficult time” making ends meet. The disabled are much less likely to have an emergency fund. The disabled are more likely to depend upon credit card loans and charging basic necessities. The credit cards the disabled can be approved for are usually the most expensive ones out there. Assistive devices are costly. It goes on and on and on.

Many of you are older and maybe discovering you could have done a little better planning. However, I know we have a fair number of younger people who have just been diagnosed and have a few good years to get their financial houses in order.

Consider this your wake-up call and never say I did not warn you.

I THINK – and that is a big think – we are OK. My only ‘big’ bill is from vacation. I have made sure we have an emergency fund. I have a will that contains some pretty good protections.

When my vision really went to hell in February I took part of my time off and went to see my new lawyer. (My crackerjack estate lawyer has retired! Sob!) We made sure the things I had in place were still in line with the laws. I would suggest you spend the money and do the same.

Why spend money on a high-priced lawyer? Well, let us just say my old estate lawyer saved me around $50,000 in taxes and fees when handling my father’s estate. I was thrilled.

In the meantime The Council for Disability Awareness has a site that will walk you through “Your Disability Security Plan” and might be helpful. They talk about keeping healthy and guide you towards sites that review other income sources like social security disability income. There are also some suggestions on budgeting and saving.

If you have served in your country’s armed services there are – at least in the USA – veterans’ benefits. I got Daddy’s home care aide, ‘Daddy daycare’ and transportation reimbursed by the Army. They also gave him his medications for free. Don’t forget to tap ‘Uncle Sugar’!

Right now, since I was caught flat-footed by the last drop in my vision, my husband and I are looking around the house and making note of the big-ticket repairs we might need to have done. Get some of that stuff out of the way while the getting is good. I would suggest you do the same.

Continue reading “Wake-up Call”

Part of the Solution

Back again. I just did a report for work. I have decided to work on mastering the speech recognition feature on my laptop for work stuff. Training speech recognition apps has become much easier in recent years – in spite of some of the gobblygoop I have sent Lin in recent months! – and if you have not tried it recently, you might want to.

I walk away rehearsing my repertoire of four-letter words much less than I used to. Maybe it is because it is harder to see what the cursed thing is actually writing?

But that is not what I am going to talk about. I am tired of working on real work so I decided to peruse a website Lin sent me. Or maybe just skim it. Who knows?

Be that as it may, the site is a study Perkins did on why the blind are not included in society. Perkins is a school for the blind. Perkins is in Massachusetts. Founded in 1829, it is the oldest school for the Blind in the United States. Learn something new everyday…or we should.

Moving right along, did you know there are twice as many blind people in the US as people who use wheelchairs? Nope? Neither did 1.7 million in round numbers. Perkins asked where the devil these people ARE. Then they asked what is keeping them there instead of out running around with the rest of the folks.

The report says discomfort, pity, fear and stigma in the greater community keep the blind from integrating into the larger world. I believe those are real factors but I am going to play devil’s advocate here.

53% of people say they are not fully comfortable with the blind. OK, but how many are truly comfortable with an amputee or someone with paraplegia? Why do you see so many wheelchairs if comfort level is such a big factor?

80% of those surveyed feel sorry for the blind. I would say they also pity the physically disabled.

Less capable of accomplishing everyday things ? Same comment.

Fear going blind? Hell, yes. I addressed this before. No one likes to lose a skill. In the end, it is about loss.

Stigma? Ditto and ditto.

So now that I shot down their expensive study findings, what do I think? I think technology is just getting around to the blind. When the inventions they are coming up with become mainstream, the blind will fear going out less and all these barriers to inclusion will come down. (Perkins thinks so too, but I came up with that before I read their statement….really I did!)

In the meantime, take responsibility. Be part of the solution. Don’t palm off the blame. How are people going to get used to the blind if we all hide in the house? Older people are more open to the blind than younger? No brainer there. Life experience can lead to many positive lessons. Someone just needs to be the teacher.

Bottom line? Be that teacher. Change has to start somewhere. It might as well start with you. Continue reading “Part of the Solution”

Bingo!

I just came from a three-hour, Bingo benefit for the teacher who has cancer. It was an excellent turn-out. 150 people. There were 75 items for the raffle. This is a good area with good people.

Comparison skill. Remember ACCEPTS of distress tolerance? People do not have to help me pay my bills so I can concentrate on trying to save my life. I am a ‘mature’ (yeah, sure) adult who could retire on state teachers’ disability and social security now if needed. Life waited to bite me in the butt.

And compared to what she has going on, AMD is a little nip. Comparatively speaking, I am just great!

Second distress tolerance skill: contribute. I paid my $20 and played Bingo. I spent $10 on raffle tickets. The same raffle tickets I had actually purchased and donated. Contributing is a way of forgetting things are not so great for you either. It also makes you feel like you are in the fight, even if it is not your particular battle. In other words, I cannot cure my eye problems, but I can help this teacher get travel money and grocery money and whatever she might need to pursue her cure.

To quote from the Mental Health Foundation, altruism is associated with all sorts of positive things. They include a decreased sense of hopelessness, less depression, increased self-esteem and better physical health. Altruistic people even have better marriages.

Berkleywellness.com tells us altruistic people have longer lives than people who do not practice helping and giving. Some of the theorists thought this was due totally to the social engagement factor. Not so. Just the interaction is helpful, yes, but at the end of day, being the one doing the helping has the greater benefit. Something to do with having a purpose in life. We circled back around to Viktor Frankl again. Remember “if you have a why, you can tolerate any how”?

So altruism is good stuff. Now moving on to perhaps more frivolous topics, I put an Ott light at the end of my ironing board. I think I am doing better in seeing colors with the increased illumination. At least I matched today. Hopefully this fix will work for a while. I hate being mismatched!

Bingo. I had not played in years but it went OK. Most of the time I was playing four cards at one time. My friend was sort of looking over my shoulder. In 20 games she corrected me one time. Not too bad.

We used the disposable, paper cards and dabbers. I could see the numbers with bare eyes but I experimented and my handheld reader would have been an option as well. Not so much the magnifier on the iPad. For that I would have had to bring the Justand. Too many wobbles over three hours.

One of the issues I had was dealing with the different layouts of each card. Having a few cards that were consistent game to game would have been nice. I looked guess where [Lin/Linda here: starts with an a, followed by amazon.com ::smile::] and large print Bingo cards are about $4 apiece. You can also avoid the Bingo chips sliding dilemma by paying significantly more and getting a plastic board with sliding panels on each number. I cannot believe anyone would object to your bringing your own cards. It is not cheating.

So how did I do? I did not go “Bingo!” but I did win a turkey fryer in the raffle. I brought it home to my husband but he doesn’t want it. Probably re-gift it to another raffle. Does THAT come under the heading of altruism? Maybe not. Continue reading “Bingo!”

A Truce

Dog sniffing signs that say ‘cocker spaniel’, ‘unneutered pug!!!’, etc. That’s pee mail. – Linda

Hi. I have not written in a couple of days. Sort of unusual as I am the chatty sort. I have been working. Crazy busy with work. Taking five exercise classes a week plus a Beastie Baby walk every day we have even marginally decent weather. Baby lives for her walkies and getting to ‘read’ her pee mail at the dog park. Life has been full of routine stuff. Nothing to write about.

Then it dawned upon me. Having nothing to write about is something to write about!

I think I wrote about this once before. I remember being a newbie with AMD and wondering how I could ever, ever adjust. Did not seem possible I could get used to having what is basically a chronic illness, a disability. Let me tell you, I am NOT the disability type!

I was afraid that once the flurry of services stopped and I had all the toys and skills anyone could give me, once the momentum died, there would be nothing.

Not exactly the case. Has the deterioration stopped? I could only wish it were so. But right now I have a lot of functional vision and there has not been another precipitous drop. (Cross fingers, Cross toes, Cross eyes.) Will I be freaking if that happens again? Is the Pope Catholic ? Let’s not buy trouble. Mindfulness says live in the now.

Have I stopped looking and hoping and praying and nagging relentlessly for some sort of effective treatment? That is a big no.

But right now AMD and I have established a bit of a truce. I am living with it.

MedlinePlus has an article on living with chronic illness. They talk about the fear, anger and embarrassment as well as feeling like you have become someone else that you don’t really know and may not have even picked for a friend. They say chronic illness becomes the new normal. It just takes time to adjust.

A progressive disease such as AMD may have belly-dropping declines separated by long periods of stability. It is during these periods of stability that you pick yourself up and try to re-establish some sort of a life. Significant adjustments may be required.

There are also those small, cumulative changes. These require small, cumulative adjustments over time.

The point of their article and the point of this page is : most of the time we do adjust. It stinks but we get used to it. Chronic conditions can become the new normal. We can learn to cope.

We can also learn to see the silver lining in our particular cloud.

Right now I am in the beginning stages of a campaign to find someone to take me along downhill skiing. I was asking some of the younger girls in yoga if they ski or know anyone who does ski. I need a ride to the slope this winter. Any slope. I made the comment I had approached the local ski club via email but I thought they were thinking I was a lot more blind than I actually am. Thinking that they don’t want a babysitting job.

A person I have seen but do not know asked if my vision was why I could not drive. She also asked how I could see to ski. I explained to her it is a central loss and, while I could see most of her, she did “not have a face”.

The response? “That could be a positive”! Do you think she knows a lot of unattractive people?

And on that note, I am out of here! Continue reading “A Truce”

The Games People Play

I think I once shared a story about my aversion to people stepping outside their area of expertise. I don’t really like people spouting off on things they know nothing about. Specifically I referred to a pop star lecturing on world peace. I think I said I would not ask him for a sermon anymore than I would ask the Dali Lama to shake his tush. (Although he might oblige. The little I have seen of him in the media, the man has a sense of humor!)

Anyway, I am going to go back on that a tad. Recognizing I am not a philosopher, I am going to share some lessons I have learned from Panda Pop [available for both Apple and Android]. What is Panda Pop? It is a free game from the App Store. They wore me down to download it by constantly advertising it on Bejeweled.

The premise is you have to save panda babies by popping balloons. Sounds a little lame, but it is addicting. I just cleared level 151.

THAT was a chore. I played the same level 50 times. And that was the first lesson. Perseverance. Try, try, again. No one ever wins by folding his tents and going home after the first failure.

Second lesson is try different strategies. I attacked that mass of balloons from every angle possible. Any way I could think of to go at them, I tried. Rigidity is not always a good thing. Einstein’s definition of insanity was doing the same thing and expecting a different result.

I also learned a frontal assault is not always the best strategy. Angle shots may get you much better results. If necessary, get devious.

Lesson next: aim high. It doesn’t hurt to try to take something out by targeting what is holding it up. If you fall a little short, you may hit a lesser target, but you are still in the game.

If you are not getting anywhere on your own, look for help. Believe it or not, people actually post Panda Pop solutions on YouTube. Don’t be afraid to ask how other people have gotten the job done. That is how I learned I needed to rescue the baby on the left before going after the ones further to the right.

YouTube was also where I discovered I could combine resources. I did not have to use only one of the enhancers at a time. I could combine them and get vines or explosions in three places, for example, instead of just one. (Download the game and look if you want to know what I am talking about. It is sort of long to explain). Be creative and try different combinations of attacks. Results might be much better.

You see what I am getting at. Playing Panda Pop has parallels to life with AMD. We need to persevere and try different strategies. Be creative and come at things from different angles. Combine resources in new and different ways. (Channel you inner McGyver!) Search for information and ask for help. Finally, aim high. We should not be afraid to have big dreams and high hopes. Sometimes hope is what keeps us sane.

Clearing level 151 was a bear but I got the job done. We can beat a lot of the problems with living with AMD, too. Maybe even beat AMD itself. All we need to do is follow a few Panda Pop tricks. Who says video games are not educational? Continue reading “The Games People Play”

When I Am Old

Hi, yoga outside last night was great. She kicked my ass as usual and I love it. Not saying what that might say about me but remember sensation is a distraction skill. Huffing and puffing and distorting your body into strange positions keeps your mind off of other concerns. When in yoga I spend a lot of time worrying about keeping breathing and not falling over!

I think you folks knew my yogini bought my car when I decided I was going to be too dangerous on the roads. My husband came upon two tires that fit that car when he was straightening up the garage.

I took them to yoga and told everyone I had come to exercise to get rid of my spare tires! Giggle. Giggle. Get it? Exercise? Spare tires? Oh, well…..

Moving right along…

This morning I put on what I thought (“what I thought” being the operative phrase here) were brown pants, brown shoes, a pink top, a pink sweater (one without chocolate on it….I think) and a brown, pink and red scarf. I got out into public and I had on plum pants and a burgundy, pink and red scarf. Crap!

I was able to ditch the scarf but all day I still felt like a fashion dunce. I have always color coordinated. This is not good.

I have already talked about the app I got for identifying colors. I may have to start using it. Although they put out a disclaimer saying it is not a scientific test, this and that, I did not do so well on the color perception test at igame.com/eye-test. There is also a link through the Popular Photography site (www.popphoto.com/whats-your-best-score). My best score was a 9. That suggests only moderate skill in perceiving color. I had not realized I was so bad. I may have to get myself a personal dresser.

Anyway, I was thinking the Red Hat Society might have the right idea. Make a virtue out of deficit. The Red Hat Society is a group of ‘mature’ ladies who have adopted a poem by Jenny Joseph. The poem is entitled When I Am Old but I don’t think people remember it that way.

How does the poem go? “When I am an old woman I shall wear purple with a red hat that does not go….” I suspect you have heard at least part of it.

I would like to propose a theory: the old woman in question had macular degeneration and could not see the difference between red and purple. She thought she was color coordinated! When someone pointed this out to her, she said she knew that (yeah, right) and she was purposely exercising her age-given right to be eccentric!

How do you like that for a theory? I like it. I am not going color blind, I am a delightfully eccentric old woman. That is my story and I am sticking with it.

Now all I need to do is find a chapter of the Red Hat Society. [Lin/Linda here: Sue and others, click here to find a chapter of the Red Hat Society near you!]

Continue reading “When I Am Old”

My Soapbox

October 18th and it is above 80! Not sure what is happening. Global warming?

Anyway, I have an offer to go to the last, open-air yoga session of the season. Sold!

People are too dang good to me and I love it! I would be a sniveling lump in the corner without everyone’s support. I don’t do well twiddling my thumbs.

Worked hard all day. I am thinking I goof off less now because I have something to prove…or I think I have to try harder so they get value for their dollar and to make up for my disability or something! Be that as it may, a few things got done. You know how it is: nothing is ever straight forward. 27 things you need for the job have to be found or fixed before you can get one thing done.

I was at a conference yesterday. Six continuing education credits down and 24 to go! At least I am doing better than I was.☺

They said they were going to have a low table for me. No such luck and I ended up sitting on the floor again. I arranged my Justand, papers, diet Pepsi, etc, around me and got as comfortable as I could.

Thank goodness I am a floor sitter from way back. Learned a lesson, though: don’t expect a table even if they promise you one.

The Justand caused a stir. People asked about it and I gave out the website address a few times. Everyone has a mother, a brother or a cousin with AMD, it seems.

Lin and I have decided it is time for business cards. Ain’t we just so professional??

I guess the lesson from yesterday was to not be afraid to talk about your vision. People are receptive. They are helpful. For every one of us out there in the world trying to make it, how many are there huddled at home, depressed and afraid? How many have no idea of the support that is available? I am thinking it is part of our job to make sure the word gets out. Also, lead by example.

OK. Off my soapbox, but I thought I was rather stirring!?

And speaking of supports, I emailed my low vision specialist today. I wanted to know how to get a replacement for my Max TV lenses. The one lens has fallen off about a dozen times and now it won’t focus well.

I have to return the bad pair and she is mailing me a replacement. Yippee! She said she has never had a pair break before. What can I say? My husband always says I am hard on parts!

Gotta get ready for yoga. Chat with you later! Continue reading “My Soapbox”

Sometimes It Happens

Last page I talked about how one of the symptoms of AMD is driving me crazy. I hate not being proficient at matching my clothes. A couple of years back I realized I had on plum (that color seems to be my nemesis!) slacks with a red sweater. On my way to my next appointment I stopped at the store and bought other slacks! Being poorly color coordinated can make me self-conscious all day.

According to my ‘personal profile’ on GuideMe – and according to just about every other source- seeing contrast also becomes a real problem with AMD. This is probably why I missed that last step several months ago and why sometimes things just disappear in plain sight!

It’s magic! Now you see it and now you don’t.

There are some online tests available but the one I saw requires registration. Since I am leery of the words ‘free’ and ‘register’ in the same sentence, I found an article that talked about the Pelli Robson chart. This chart is a series of letters of uniform size that you can read like the Snellen chart. The difference is the contrast between the letter and its background decreases from line to line.

www.psych.nyu.edu/pelli/pellirobson/ offers a link to a printable contrast chart for personal use. It is – here is one of my favorite words again – free. You can also get free scoring sheets online at https://www.scribd.com/mobile/doc/59085894/F.

A study in Finland suggested an average score for 60 year olds would be 1.68. 1.84 was an average score for their subjects in their 20s. These scores make the most sense when you look at the scoring sheets.

Topic next: GuideMe was reassuring for me in one way. It says I only have a 15% chance of developing wet AMD.

Progression to wet AMD is not a guaranteed thing so if you have dry, you are allowed a sigh of relief at least on that point.

They still say dry AMD progresses so slowly 50% of sufferers die before experiencing significant loss.

Not a lot of comfort when you are the one ‘sometimes it happens’ to. However, the rest of you may have another sigh.

Of course, after reading dry AMD is so slow it doesn’t really negatively impact many people, I would like to know why, when I went to the self-help guide and clicked on writing, the first method mentioned was Braille! So sorry, but there is no way at 63 years old I am learning Braille.

Be that as it may, the self-examination of independent living skills has some really great suggestions. I would suggest looking at them!

Gonna end here. 5:45 came early this morning. Still trying to figure out why I got picked up at 6:56 when I wanted to be at work at 8:30. Life does have its mysteries. Catch up with you later! Continue reading “Sometimes It Happens”

Motley Collection

This may prove to be another motley collection of topics. Fair warning!

I had my credit card rejected by Amazon again. Clicked on it and it went through on the second time again. Since this was about the fourth time for this nonsense I called customer service. They had no clue. Said to talk to the bank. Great.

I asked the customer service guy about accommodations for the blind and visually impaired and he gave me the accessible page we talked about plus an email address: accessibility-feedback@amazon.com.

I wrote to them asking for some info on what services they have. I told them about our website and how their information could reach thousands! ? ….OK, a couple of hundred but I still think that is pretty good.

That was last week. Nothing at this point. I am ‘sure’ they are bouncing the request up to the president of the company and I will get a wonderful response (yeah, right) but at the moment their response is underwhelming. As in non-existent.

Companies need to smarten up. Some data indicate 3% of the population over 40 is blind or visually impaired. Bloomberg Technology (in Aging Boomers Stump Marketers Eyeing $15 Trillion Prize) talked about how much money we older folks control and how at least one company is trying to woo us.

Anyway, 3% of $15,000,000,000,000 is approximately $4,500,000,000. That is a LOT of financial leverage in my book. Companies should be nicer to us in my not so humble opinion. But then, who listens to me?

Topic next: Lin put me on to an interesting website. Those of you in the Facebook group probably were aware of this months ago because of our publishing time lag.

Weird to think I could die tomorrow but still be publishing for several months after.

Anyway, the site is http://guideme.preventblindness.org/ which brings you to GuideMe. It is an educational site for those who are newly diagnosed.

They start out asking you to complete a survey to help personalize your answers. I thought it was weird they assumed three things: you live alone, you don’t work and you live in the USA. Weird. However, when I tried to correct one of the answers it threw me onto a blank questionnaire. You don’t have to have a ‘personalized’ answer sheet with their incorrect, preconceived notions tainting it.

I really need to write a report for work (and it is a beautiful day and I have housework, etc) so I can just about guarantee you this won’t happen today but what I hope to do is work my way through my personalized report and discuss things here.

I already went to the MD (as in macular degeneration, not medical doctor) support link in GuideMe and looked at the visual field grid. Looking with my left eye I lose 23, 24, 32 and 33. With my right eye I lose 24 and 33.

I did not, however, do things according to directions. You are supposed to move towards the grid until the ovals on the side disappear and they never did. Nose on the screen and they were still there. I would like to say that is a sign of truly superior peripheral vision but logic says I did something wrong.

That is it for now. Gotta grab something to eat and become a productive member of society. Clients want their test results. Ciao! Continue reading “Motley Collection”

Kung Fu Fighting

[Here’s a reference to a more contemporary song than we usually use! Kung Fu Fighting.]

It is mid-October in real-time. Here in the States, on the election front, we are hearing about bad behavior. A lot of the bad behavior they are talking about has had women as the targets.

Sir John Dalberg-Acton is credited with saying “Power corrupts. Absolute power corrupts absolutely.” Add to that the fact sexual assault is generally believed to be a crime of power and control and you have a very nasty mix. One has power. The other does not. Throughout history this has led to a perpetrator and victim relationship an uncountable number of times.

I bring this up not because of the political scene – I will remain mute about that – but because we seem to have the problem locally. There are rumors one of the transportation drivers is soliciting passengers! He is said to be doing this in a rather vulgar fashion.

In classic form, he is targeting women whom he sees as having little power. The rumors say he has approached addicts and women of color.

I do not know which driver the rumors are about. I do not think he will approach me. I present myself as confident and competent. They take me to professional jobs….I have a lot of vision left.

But what happens when my vision gets much worse? Will the power balance shift? Will people who get their jollies from abusing a power differential see me as a victim?

I have no great desire to live in fear of people who think it is fun or makes them important to prey on those with a disability. Just the same, loss of a sense means a loss of power. How does one try to keep the balance a bit more even?

In the modern way of getting information, I did a web search. There were some suggestions that sounded like they would be a lot of fun. Cane-Fu (think Kung Fu), Grasshopper, is said to increase physical fitness and confidence. A white cane can be a great weapon of opportunity and used to trip and smack shins. Like I said, sounds like fun☺.

The American Council for the Blind endorses a program called 1 Touch. According to the article, the program was developed in London by a martial arts instructor, Stephen Nicholls. The technique uses balance, coordination and dexterity as well as situational awareness. The article talks about using leverage and joint locks.

All of which is great but suggests to me that having to use this technique means things have escalated way above where I would want them to be. I prefer not to have to engage in hand-to-hand combat!

Since I prefer to avoid a problem rather than defend myself physically, I offer as kinder and gentler options with some suggestions as made by Peter Shankman in How to Avoid Being a Victim Anywhere, Anytime. Shankman suggested things like not developing patterns of travel and both knowing and being aware of surroundings.

Situational awareness is priceless. Also priceless is your ‘gut’. Listen to what it is telling you. If you sense danger, get away!

Things like carrying a whistle and having a buddy system are important. Don’t fumble for keys, etc.

Equally important is not looking like a victim. Try to keep your head up. Keep as close to the center of the walkway as you can when walking. Try not to look helpless or fearful. Be confident. Maintain your dignity.

Keep your power. Present yourself as someone they would not want to tangle with. Attitude will serve you well. Continue reading “Kung Fu Fighting”

Mess of Topics

How about a conglomeration this time? Excellent synonym for a mixed up mess of topics.

OK. Payment methods. That article just went into several different kinds of secure (we hope) payment systems that have sprung up since all of the credit card fraud and hacking has been occurring. These systems put an extra layer between your information and the outside world. Example: PayPal. I am betting most of you know MUCH more about them than I do.

Second topic: an observation I have made about myself recently is how little I actually wear my glasses any more. I am not finding them all that useful. Sort of discouraging considering this is the pair with all the bells and whistles and set me back $841!

I find the bifocals are not helpful at all when I am trying to read. The far point correction does not help either.

What works best with the CCTV and the zoom on the iPad is to ‘naked eye’ it. Anyone else experiencing that?

Oh, iPad. While I am thinking about it, I want to mention I just upgraded the system on my iPad mini. I think they enhanced the pinch and zoom feature. I tried to find something addressing it online but could not find anything. Just the same I believe zoom is working a couple of places it did not before. Writing my emails for example. I also think it zooms a little larger. I have been using the zoom window feature from the accessibility menu less since the upgrade. That feature can get a little flippy on me. Sometimes it sticks and sometimes you push a little too hard and your screen goes flying off. Maybe this will be a better option.

[Lin/Linda here: There are several new accessibility features in iOS Version 10. Here’s an article with 4 of them. One of the new features allows your iPhone camera to become an electronic magnifier. Here’s how to set it up.]

That was third topic. Back to the second topic I also find I don’t mind the gap (apologizes to the Londoners out there. I could not resist the pun) in my vision so badly if I don’t wear my specs. I have been myopic for over 50 years and without my glasses the fuzzy caused by the GA blends in with the rest of the blur. Strangely normalizing for me.

Bringing up another stray thought. Do you think people with a history of crappy eye sight adapt better to the problems of AMD and visual impairment in general? It would make sense.

Topic last: I am still trying soooo hard to turn my mind and adapt to this new reality. It is killing me! In case you have not figured this out (a little slow on the uptake? ?), I like to take charge. I think I have great ideas! Stepping back and letting others take the lead on this fitness community party thing is ridiculously hard. Can I run around freely and do what needs to be done? Ahhh, no. Therefore can I take the lead? Not really. Still want to. Old war horse here. What a momentous pain in the tush is AMD! Continue reading “Mess of Topics”

Online Shopping

I just edited my Amazon payment method….again. My last credit card was compromised so they sent me a new one. For some reason the payments were constantly reverting to the compromised card. Being rejected of course. I tooled around until I found a way to delete the compromised card. Problem solved. I hope.

Then I had a little revelation. My husband is ridiculously (in my way of thinking) computer phobic. Who is doing this when I cannot see?

As much as Amazon is whiz-bang fantastic in providing access to just about everything that can be purchased in the known universe, we all know it is a little lacking in the human touch. If it can be done with technology, Amazon will find the way.

Who is helping this befuddled, little old, visually impaired lady when that time comes?

I went online, of course. What Amazon offered under the heading of accessibility was….more technology! The articles were about accessibility feature of the Kindle, etc. Not what I had in mind.

The American Federation for the Blind ran an article that came much closer to what I had in mind. The title was Accessible Shopping at Amazon for People with Visual Impairment.

First thing they suggest is http://Amazon.com/access. I went there and found all of my identifying data and purchasing history. The page is bold and clean. Easier on the eyes and less confusing.

The article – which I am suspecting was written and submitted by Amazon – mentions a voice search option you can use through their mobile app. Mobile app means you are using a cell phone or a tablet. Read ‘small screen’ for that. Anyway, you can use voice recognition to launch your search, you just may not be able to see what comes up!

Closer to what I had in mind was the contact button. If you hit the contact button you are supposed to get to leave a message. After hitting the contact button I just got routed through three navigation screens before I pulled the plug.

Another web search found the voice number for Amazon customer service. It is 1-888-280-4331. You call and leave a message.

They say they will call you back with alacrity. They do. I have had to call on billing problems. I am not sure if they are set up to actually help anyone with ordering. If anyone tries it, let us know. Remember: getting through this mess is a community endeavor. We share the ‘wealth’.

AFB also has an article on accessible payment systems for us through Amazon. I will see if it has anything worthwhile in it and get back to you. Continue reading “Online Shopping”

Power of Prayer

Hello! Busy day. The mess in the house reached critical mass. Best to clean before it exploded!

That was my afternoon. My morning was a double dose of exercise, Zumba and yoga.

Do not ask me how I luck out when it comes to people, but I have to say again, I have been blessed with many good ones. Not the least of which is my exercise community.

That lawsuit is over. A weight has been lifted. Not the verdict we would have liked but the outcome was not as bad as it could have been. We are planning a party.

Some people would wonder why we would have a defeat party. No, in the bigger picture this was a victory! We hung together and supported our own. We came through it as a community. We go on as a community. Not a defeat at all.

Once again, it is important that we count our blessings. Gratitude and comparison. Two distress tolerance skills. It could have been so much worse.

Moving on….

I was talking to a girl I don’t get to talk to that much at Zumba. I gave her the standard spiel: “if I walk past you and don’t speak, speak to me.” I am losing my vision, not my manners! Her response to the news was to promise to pray for me.

Now, I know prayer is good for you when you are doing it. Prayer has a meditative quality and has positive physiological effects. Calling on ‘expert help’ is comforting. But what about other people praying for you? Can that really be helpful?

Common wisdom says it is a definite yes. For thousands of years people have prayed for the sick and infirmed…not to mention the blind. This is a time-honored tradition. It works; right?

Well, some sources say conditions purportedly cured by prayer are ‘soft’ conditions and it is impossible to say what really caused the improvement, if there were really an improvement at all. What is happening is just too subjective.

That is the rational, more logic based argument. In their March 31, 2006 edition, the New York Times published the scientific argument. The study in question had a group of heart patients prayed for during surgery. This group was told of the prayers. Another group was prayed for and not told while the third group was not prayed for at all. Turns out there was no difference in outcomes between the group that was prayed for without their knowledge and the group who was not prayer for. The weird thing was the group that was prayed for and knew it did somewhat worse!

Not exactly the prevailing belief, huh? We want to believe in miracles. We want to believe good wishes have some effect.

I thought about it a bit and even if it may not be the answer, I am appreciative of the help. You never know. It has been said faith can move mountains and I need a few mountains relocated.

In the meantime, in between time I am taking some advice from St. Augustine:

“Pray as though everything depended on God. Work as though everything depended upon you.”

Keep on keeping on. Continue reading “Power of Prayer”

Reset Button

My body hit the reset button yesterday. In about 15 minutes I threw up four times. Then I was fine. What was up with that?

Friday night I slept ‘weird’. You know when you are not sure if you are dreaming or awake? One of those nights.

Saturday is my busy exercise day. They scheduled Zumba and yoga back to back. Two of my favorite classes by two of my favorite instructors. Probably overdid something because my upper back was achy later.

Then I had a report to do for work. This was a rush job so I could not use the scoring service. For those of you who do not know, hand scoring a personality test can be long, tedious and confusing when you have good vision. This was a chore.

Then to top it off, Beastie Baby and I got caught in the rain. Should have listened to her. She had been after me to go earlier but I needed to score that cursed test.

Bam. Reset! Thinking about it later I decided it was the couple of hours (or more!) I took to score and write that did it to me.

It was fatiguing and I did feel like I was laboring, but how much energy can just plain, old seeing really use? Actually, a lot!

Did not find much on the energy used by sight but there are suggestions sight is a very energy costly sense. Iflscience.com has an interesting article on blind cave fish and their cousins who live in regular streams. They estimated the fish with vision were using between 5% and 15% of their energy on vision. The variation was due to variations in fish size. Smaller fish, bigger energy consumption. That is because of the brain to body ratio but that is not important to this discussion.

The important point is: vision is an energy hog! The iflscience.com article also noted another way of realizing how energy-expensive sight is is to be aware of how quickly species living in total darkness lose their sight. Vision is just too energy-expensive to a species that has no use for it.

So, OK, maybe I am the only one who finds blind cave fish interesting. How does this relate to us? It means when we are trying to see, we are burning energy. This is a body stressor. Thus my vomiting session yesterday.

That means we need to be aware of just how much effort we are exerting. I probably need to be kinder to my body and more cognizant of my limitations before it goes into reset mode…tough lesson.

I also pulled an article on eye strain off the web. Will read it and get back to you. See if there is anything that can be done about THIS problem.? Continue reading “Reset Button”

Reading Speed NOT Speed Reading

OK. Waiting for a ride so let us get this started.

He, Legge and Yu published a research paper entitled “Sensory and Cognitive Influences on the Training-Related Improvement of Reading Speed on Peripheral Vision”. They cited research indicating reading speed can be increased through training on a letter recognition task. They said that in addition to things like cognitive skills that help us to use context clues, reading speed is influenced by the size of the vision span. Vision span is defined as the number of text letters that can be recognized without eye movement. Perceptual training using groups of three horizontally arranged letters had been found in other studies to increase reading speed anywhere from 40 to 83% in normally sighted individuals. He and the other guys found increases in reading speed around 40%. Not too bad.

Since there was not a lot of explanation as to what the training actually involved, I went searching and found a paper by Yu (legge.psych.umn.edu) and several of the other folks. This study was completed with elderly people with normal vision. The training they described was “repeated measures of visual-spatial profiles” with no feedback given. Subjects were asked to name aloud each of the three letters they saw. The subjects could not alter their ocular fixation.

In other word it sounds like a pretty low tech intervention that you can do sitting at your kitchen table. Look at a short word and see how many letters you can see and name without altering your gaze. Spend a little time doing this every day.

Worth it? I have no good idea. The research with the older people discovered improvements in vision span but improvements in reading speed only with the size and type of font used in the training. There was also a loss of skill from one training session to the next. In addition, while the subjects were using their peripheral retinas, none of them had eye disease.

It sounds like this research is an ongoing concern and they will, or already have, published more. Yep. Another quick search turned up a 2016 master’s thesis from the University of Ohio. Thesis advisor? Dr. Yu.

Bottom line? There may be an easy, low tech way to regain some of your reading speed. Our friends in the Midwest and in Hong Kong are working on it. Don’t give up the fight.

And in the meantime, if anyone tries this, let us know how it worked, ‘K? Continue reading “Reading Speed NOT Speed Reading”

Taking Care of You

Morning. I have nothing until noon and I just slept until 8:30. Whoa. Must have needed it.

Which brings me to the topic for this page: a quick review on self-care. I forget and I even teach the stuff! I suspect you forget, too.

We were gone for nearly two weeks. Iceland meant new climate, new food, new routine, new time zone. These are all stressors. The human body was meant to cover the distance between here and there in five months, not five hours. Then I came home and was not at the top of my game for something important. More stress.

I am sure you know about you. Me, I show stress by not sleeping and sometimes I get a migraine. I had two last week. While migraines are not fun, they tell me something. I need to stop the nonsense and take care of myself! That means a big dose of PLEASE.

Off schedule, my husband and I both missed our meds a couple of times. I needed to take care of my physical illnesses by getting back on my meds on a regular basis. That meant being sure I took my meds right after brushing my teeth like always. Routine.

Eating properly had to happen which meant I had to – gasp! – cook. My big deficit is vegetables. For me, carbs and salt are basic food groups. I had to avoid that and provide myself with meat, potatoes and a vegetable or two or three.

Balanced nutrition was a must. We are what we eat….in that case, I’m popcorn!

Avoiding intoxicants has never been a problem for me but if you are the type to have a couple of beers or a few puffs to destress on a regular basis, you should stop. Not good for you.

I say that and then I turn around and say I took an OTC nighttime pain reliever to sleep. This is not an every night thing, however. I also used aromatherapy with a little Vicks Vaporub and did my square breathing.

Remember to sleep in a cool, dark room. Limit your screen time before bed. That is what the experts say.

Exercise has been royally screwed up this week because two of my rides had other obligations. Back into the groove tomorrow. In the meantime I had my husband take the Beastie Baby and me to the beach for our walk.

A good dose of nature is good for what ails you. Gently running water is great for providing a little dose of tranquility.

I admit, attention hog that my husband says I am (and I am. I love positive regard), I did have a few other mood boosters. My third job boss is coming half way to pick me up and take me up there. They have work for me. I may be pitiful but knowing I am wanted means a lot.

Then it turns out I did not do as abysmally in the photo contest as I thought I had. Out of three entries I had a second and an honorable mention! Yippee!!!!

To make matters better, my life-long friend the artist had three paintings in the associated art contest. She earned two firsts and a second! Taking photos of her paintings with their ribbons and hearing her reaction was the most fun of all! I “made (her) day!” , which was awesome.

Doing for others really does help you get over yourself.

Time to get ready for work. I will get to reading that article about increasing visual span this evening. Who knows? Might help. Continue reading “Taking Care of You”

You’ve Got the Look

Fast forward to the next evening. I have finished reading Enhancing Visual Performance for People with Central Vision Loss by Susana Chung. It took me a while because since I have been losing my vision my reading speed is slow.

The research Dr. Chung did tells us why. It sheds some light on the rest of this mess, too.

Remember when we talked about eccentric viewing? That is looking at things off-center. It is using the peripheral retina, as opposed to the macula, to do our seeing. I knew the peripheral retina is not specialized for detail like the macula but I found out the finest detail the peripheral retina can see is four times larger (at 10 degrees from center) than what the macula can see.

That means we are sort of using a sledgehammer to do the job of a jeweler’s hammer when we try to use the peripheral retina to read. It is rather a blunt instrument!

I also found out if you are using a part of your retina 20 degrees of arc from your macular to read, you are, on average, reading six times more slowly than people who can still use their maculas! No wonder reading can take forever!

Another problem is eye movement control. Your eyes are made to line up the macula with what you are looking at, not to line up some random chunk of peripheral retina. The macula is sort of the sights on your ‘gun’. it wasn’t made to be held sideways and shot no matter what those gangsta movies suggest. It is not natural.

It is possible to improve reading skill and speed through magnification but that only works to a certain extent. Once print size gets too big, you start to have diminishing returns.

Dr. Chung messed around with several, different variables and really did not find anything that had an effect on reading speed in people with central vision loss until she started to study visual span. Visual span is how much information you can take in. It is sort of how wide your ‘look’ is. Most ‘looks’ that happen at the macula take in between 7 and 11 characters. If you are trying to use your peripheral vision 10 degrees of arc away from the macula your ‘look’ can take in about 5 characters at a time. Do the math. That is about half as much information.

Researchers have discovered there is a relationship between visual span, or how much info you can take in in one look, and reading speed. Increased visual spans should therefore lead to increased reading speeds. Perceptual learning – and another study I found – say it should be possible to train someone to widen his visual span and therefore increase his reading speed.

Revealing the actual way to do this is going to have to wait though. The journal article I have is over 20 pages and my reading is a little slow! ? Catch up with me later. Continue reading “You’ve Got the Look”

I Have Macular Degeneration…Now What?

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me. You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers:

Click here to go to Guide Me.

Click here to watch a 4-minute video that explains what AMD is, what causes it, and what can be done about it.

Click here for a good list of Frequently Asked Questions.

Click here to go to a great site maculardegeneration.net where you will find articles written by people with macular degeneration and caregivers. They also have a Facebook page.

What other websites are helpful?

Here are some of our favorites:

Click here to find out should I take the AREDS or AREDS2 supplements?

Click here for a video that covers important information about AMD

Click here for a description of dry vs. wet AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here for an explanation of the stages of AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to read about what happens if you have AMD in only one eye

Click here for some answers to common questions about depression after diagnosis

Click here for an article about how vision rehabilitation helps prevent long-term depression

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

Click here to find a support group (I’ve been told that this site may not be up-to-date. Ask your eye specialist for a referral.)

Click here for eye-healthy foods including a Healthy Vision Grocery List (2/14/2022 site wasn’t formatting properly.) Click here to read the answer to the question ‘What should I be eating or not eating to hopefully slow the progression of my AMD?’

Click here to find out what vision changes/symptoms to look for (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)

Click here for tips on how to make the most of the vision you have (section toward the bottom of the page; lots of other good information on the whole page)

Click here for a FAQ (Frequently Asked Questions) from the Macular Disease Foundation Australia.

Click here for a FAQ (Frequently Asked Questions) from our Facebook group.

Where can I do more research?

You can do searches on the Internet – there is a LOT of information there. We have done a lot of research and here’s how you can find it.

Click here to go to How to Navigate and Search Our Website.

Join our very active Facebook group Our Macular Degeneration Journey. There’s lots more information there as well as support whenever you need it.

How do I move around on the website?

Click here to go to How to Navigate and Search Our Website.

To find about more about me, about Sue, about our project, go to the menu at the top of the page.

Reviewed 02/14/2022

Face to Face

“OK, so what the hell did she do?” Flubbed my testimony. My yoga instructors, the defendants, say I did not. Others say they screwed up on the stand. They are all still talking to me. Maybe I really do hold myself to an outrageously high standard. Just the same, I disappointed myself.

Discovered several things from this experience. One of them was how dependent I have always been on face reading.

There are all sorts of crazy articles on face reading as part of Physiognomy. This appears to be related to Phrenology, studying the bumps on your head to determine things about your brain functioning. This is NOT what I am referring to.

What I am talking about is covered in a lesson on Wikihow. The lesson is entitled How to Easily Read Faces and Facial Expressions. It talks about how to use expressions and micro expressions to determine how someone might be feeling or thinking.

I have always known I use nonverbal communication, but I never realized how dependent I am upon it. I can still get a vague idea of people’s nonverbal communication in the office but my clients are generally about three feet away. Across the courtroom? I really felt at a disadvantage!

I went online and looked at least a dozen articles on nonverbal communication and the blind. Every one of them dealt with teaching nonverbal expression to the visually impaired. Not a single one said anything about nonverbal reception!

It was not encouraging to read the statistics quoted in a PDF entitled
Strategies for Enhancing Non-Verbal Communication, either. That document said communication is 55% visual, 37% vocal and only 7% verbal! OMG! I am sunk.

To their credit, the authors of this lesson plan put forth some suggestions for increasing verbal comprehension by using situational comprehension. However, nothing they list has anything to do with increasing understanding in other ways, especially comprehension of thoughts and emotions.

So now what do I do? Damned if I know for sure. Maybe make sure I can use my technology to magnify faces so I can really see the expressions. Beyond that I am at a loss. Suggestions? Let me know if you come up with anything. Continue reading “Face to Face”

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Where can I quickly find information about AMD?

What other websites are helpful?

Where can I do more research?

How do I move around on the website?

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