Puppies!!!

To quote a very famous dog, Scooby Doo, “ Cookies!”

For those of you who don’t know, internet cookies are essentially little messages your computer sends the web. Since they are based on your viewing habits, companies that sell things of potential interest to you can follow them back like bread crumbs. Cookies are why when you buy something or research something all of the ads on your page are suddenly for similar products.

It would appear companies are now picking up on my doing a lot of vision related searches. I believe they are a bit slow on the uptake considering I have been researching vision loss for over a year and a half but what the hey.

Maybe the birds ate my cookies. After all, that is what happened to Hansel and Gretel.

The specific company that has caught up with me today is IBM. IBM is not what you think of first when you think low vision but apparently they have been collaborating with Guiding Eyes for the Blind. I might not have read the article but they picture six, utterly adorable Labrador Retriever puppies. Be still my heart. I would probably walk across hot coals if a puppy were on the other side. I read the article….and watched the video.

The article is about how IBM has been helping Guiding Eyes for the Blind become more efficient. They were washing out something like 70% of their pups. This was even sometimes at the end of a 20 month training period that cost up to $50,000. Yikes. IBM, through their Watson software, reduced this wash out rate 20%. They analyzed years of data to match trainers to pups. Even with dogs some teacher/student pairings work better than others.

That was about it for that article, but all of you dog freaks should look at the video of those adorable, adorable pups. If you can, also look for the Today Show videos on YouTube. Did not know this but the Today Show has been featuring Puppy with a Purpose. Some of these pups are to become guide dogs and other will become service dogs. Either way, they are, once again, adorable. Eye candy for passionately puppy people, like me.

There is no way I could raise a pup and give it up at the end of the year. My dog and I would be sneaking across the border to Canada in the dead of night.

Likewise I am a softie as a puppy Mommy so I would not have what it takes to have a working dog. She would spend her days on her Perfect Sleeper just like Beastie Baby.

However, should you be willing to either raise service pups or be in need of a service dog, there are places to inquire. Do I know what they are? Nope. I will leave that to my highly competent editor and fellow puppy adorer. Lin! Help! [Lin/Linda: I’m here! In the US, the best place to start is with the National Service Animal Registry.  In the UK & Ireland, Europe, Australia & New Zealand and Asia, it’s Assistance Dogs International.]

Continue reading “Puppies!!!”

Get Your Magazines

Not quite sure what I did with myself before I had an iPad. After making pancakes for breakfast, playing in the snow and helping my husband dig out – again – I went searching online. One thing I discovered was this: I love National Geographic magazine more than I thought I did.

The reason is pretty simple. Being at loose ends, I had rummaged through a pile of magazines and wished it were easier to actually READ them. Just for crap and giggles, I went online and discovered National Geographic print magazine subscribers get FREE digital access. Yippee!

It was fairly easy. I went to the support center and typed my question. What came up was a question from a subscriber asking how he could read more than one article online at a time. The site gave two ‘click here’s. One was USA and Canada and the other one was the rest of you guys.

They ask for your mailing address and your email address. They also ask for the subscription number. The subscription number is on the address card that comes with the magazine. It is the number directly above your name. You create a password and you are in. Easy peasy.

The site does zoom. Score! Once it was zoomed in I had some problems scrolling and also had some incidents of the ever delightful flying off the page, but all in all, not too bad. Better than not having Nat Geo. The photos are even better on the iPad if that could be possible. Also, no more nasty glare from the glossy paper reflecting the light on the CCTV.

I started searching for other magazines that offer the same service but did not have a lot of luck. My other subscriptions are Nat Geo Traveler and Reader’s Digest. Traveler would be assumed to have the same offer because it is a Nat Geo product. Maybe. Didn’t actually check. Reader’s Digest did not seem to have the same service. Pooh. At least I could not find it and that one I did look.  [Lin/Linda:  A Reader’s Digest subscription does give you both print and digital version. With National Geographic Traveler, you can get a digital only subscription or print only or both.]

Reader’s Digest disturbed me even more when I discovered they are not available for free on BARD. Both Nat Geo and Nat Geo Traveler are represented in audio format. Good people the National Geographic Society.

If you are able to get BARD and like magazines, check out the listing. There are several dozen there. They are not necessarily right up to date but pretty close. I found February, 2017 and this is mid-March.

BARD has Playboy in audio. Apparently there are guys out there who really do get the magazine for the articles. ?

Better yet, they also have Playboy in BRAILLE! I do not want to know what that is all about! My imagination is running away from me as it is!

If you subscribe to a print magazine and would like online access, check it out and let us know how you make out. There are certainly others that offer free access online. Continue reading “Get Your Magazines”

In a Pig’s Eye

About three hours later and the ‘tapering’ snowstorm is not tapering. Anyone ever read ‘Ghost Story’ by Peter Straub? It scared my socks off on a summer day. On a day like today I would probably be quivering under the covers! [Lin/Linda: this was written in March of 2017.  In ‘real time’ it’s July 2017 when many of us in the US are having record high temperatures. Thinking of snow is ‘refreshing’!]

In ‘Ghost Story’ it starts to snow. They cannot keep the roads open and it snows. The electricity goes out and it snows. The phones go out and it snows. Eventually some smart soul figures out there is a malevolent force at work in this small, New York town. Yipes!

‘Ghost Story’ is on page 3 of the Gs in BARD. It is available as an audiobook on Amazon for $17.95. If you are still able to read print, you can get it used for about ⅕ of that price.

Another way to scare your socks off? ‘Turn of the Screw’ by Henry James. This one is a classic and free on Kindle. It is on page 15 of the Ts in BARD.

I will vouch for them both as excellent reads. Anyone else have any recommendations they would like to share? Just because we cannot see so well, doesn’t mean we cannot enjoy a good book. Since we like to think of our group as a cut above, try to avoid recommending trashy novels.  Although for a whole series of semi-trashy novels I would recommend the ‘….in Death’ series by J.D. Robb, also available on BARD.? [Lin/Linda: one of my favorites, too, but I don’t think I’d call it ‘trashy’ but definitely R-rated.   Click here for the list in order of publication date.  They’re available at amazon.com, too.  Click here for the first one ‘Naked In Death’.]

Anyway, that was NOT the way I was going to start this page. Not the topic either. I just looked outside and found it all a bit surreal. We are approaching an accumulation of two feet. Not much for some other places but impressive for Pennsylvania.

What I was going to do was tell you about “in a pig’s eye” and how the phrase now has a new meaning. For our international friends, “in a pig’s eye” is an old American expression that implies disbelief. It is the antiquated version of “No way!”

Now, they are finding a way to study drusen in a pig’s eye. Well, actually in a culture medium in which they have placed retinal ‘pig’-ment epithelium cells. (Alright, so it was corny, but I couldn’t resist.) They have found out that pig RPEs are similar in many ways to human RPEs. They have discovered the RPEs in early AMD are actually still functioning and the Bruch’s membrane may have more of a part in the process than previously believed.

This should just be the first of many good discoveries to come out of the pig’s eye experiments. Because they are now able to do a lot of manipulations of pig RPEs being grown in cultures, research can go faster. A lot faster than it would go trying to get people to have all these manipulations done on THEIR eyes.

So there is ever increasing hope here. When you tell people there is a bright future for AMD folks and they say “in a pig’s eye!”, your response can now be “Exactly!”

Keep on keeping on. There is hope.

Now could somebody stop this snow? Enough is enough already! Continue reading “In a Pig’s Eye”

Stop Procrastination…NOW!

And a pleasant good afternoon to you all! I am in a good mood. The really good news is – drum roll, please! – I found my iPad! I had this mini epiphany. I remembered I had a bag with a test in it also in my rolling crate. The little devil was hiding in there. “Reunited and it feels so good!” Anyone remember Peaches and Herb? [We haven’t had a music reference for some time.  Click here for Reunited by Peaches and Herb.] Possibly one hit wonders. Dunno.

Anyway, once again I am the example of what not to do. Do not fail to activate find my iPad. Having done that would have saved me grief.

Second happy thought: I skied all afternoon yesterday….detour here. Why does autocorrect always want to turn skied into smoked? Insidious plot by the tobacco companies? Subliminal suggestions? Weird.

Back on track. I skied all afternoon! Daughter of a friend drove about 40 miles to come for me and then another 40 miles to take me to the ski area. Bless her soul.  Yes, I paid her way. It was a win-win situation. She who does not have a lot of money got her way paid. She with no way to get there got a ride. I can live with that.

Another good thing: I was cross-country skiing this afternoon. My dog walk was a dog ski. Should be able to go several more times in the next week. Did I mention the weather is freaky? We have gone from 70 degrees in February to a predicted blizzard in March. Nor’easter said to be on its way. Again, weird.

Please note I am rambling. I don’t want to work in my taxes and I would probably do anything that is not illegal, immoral or fattening to get out of it right now.

Wait, nix fattening. I have exercised a lot this weekend.

Procrastination was a lovely little invention. Seth Gillihan writing for Psychology Today said people procrastinate because a) it is going to be a pain or b) they fear they might not do a good job or c) both a and b.

In other words, things we procrastinate on are generally just plain uncomfortable. Procrastinating is rewarding because we can pretend that we have ‘dodged the bullet’. In psychology talk that is negative reinforcement, i.e. removal of something negative that increases the chances of the action that removed the negative of happening again. That was a little convoluted but you can check the link for clarification.

Gillihan has a list of ways to avoid procrastination. I plan on doing some of them. I am going to accept (DBT alert!) the cursed things have to be done and consciously decide to start. I have already gotten pieces of the process done so it should be more manageable. Accountability is already there. The accountant and the IRS see to that. I could probably find someway to reward myself.

That leaves two of his ideas: make a space to work and have a time and reminders. I could probably work on them right here. A time? We probably won’t have school Tuesday. How about then?!??

What? Why not? You guys really are no fun!? Continue reading “Stop Procrastination…NOW!”

The More I Like My Dog

“The more I learn about people, the more I like my dog.” – Mark Twain

“When things go wrong, don’t go with them. ” Elvis Presley

I am still kvetching. I got the new washer. Then I had to replace a well pump at my first rental. I cannot complain about the longevity of the pump (just the price!), but the washer?

What happened to the days that major appliances lasted more than five years? What happened to pride in what you produce?

Thursday morning I was arguing with my second rental tenant via text. “Yes, you owe me at least four month’s rent. I need a check!” Twenty minutes later I get a phone call from a woman asking me to give him a credit reference! Amazing. Reality check. Why would you list someone you owe money to as a credit reference?

This morning I was rushing out to the van. I threw my iPad Mini into my rolling crate. Later when I looked for it at the office, it was nowhere to be found. I am sick about this. There were photos and a lot of apps on that machine. The dispatcher at the transportation company could not have cared less. Would it have killed him to FAKE some sympathy? What happened to customer service?

As much as I generally love and praise people, there are some times I dislike them quite a bit. Quite a bit. Have a series of less than happy encounters and you can be rolling downhill on a slippery slope.

I have talked about the DBT concept of turning the mind a little bit but not in-depth. Turning the mind is a distress tolerance skill. It involves making the conscious choice to turn towards acceptance of a bad situation (acceptance being the first step towards change) or simply to turn towards positive functioning. A 2006 study found that approximately 40% of happiness may be determined by intentionally engaging in positive thoughts and activities. A statistic like that makes taking the happy path look pretty appealing. Even when you are not feeling it.

Realizing I was in a foul mood – and there being fresh snow! This weather is so flippin’ weird – I put on my cross-country skis and tried to ski. Very wet snow so I was sticking badly. A couple of times I had ‘platform skis’ with three inches of snow stuck to the bottom! Back to the house for the silicon spray and a second attempt.

This is another aspect of turning the mind: it doesn’t just happen once. Every time you come to a decision point, somewhere you could spiral down or turn towards acceptance and the more positive adjustment, you have to choose all over again. Again and again and again. Health is a choice we have to keep making over and over again.

So I accepted the snow was very wet and I needed silicon spray. Lots of spray and a few passes along the same path and I was doing my version of zipping along. No spray and no trail breaking? That would be not accepting reality and no zipping along. Zippy is good. Trying to move on ‘platform skis’ is not.

My tablet? I haven’t totally given up. I am going to talk to the drivers but I ordered a new one. The reality is mine is nowhere to be found. Not accepting that means no apps that I need to help me out. Accepting it may be gone allows me to try to solve the problem.

People? Oh, might as well accept it. Lots of them are idiots. Didn’t you know? ?

P.S. You can set up your iPad so it can send you an SOS when it is lost or stolen. It is in the systems menu. I will do that with the new one!  [Lin/Linda here: you do have to set this up BEFORE you loose your iPhone or iPad.  Click here for those instructions and also how to use the Find My iPhone app.  You can do something similar with Android devices, click here for more information.] Continue reading “The More I Like My Dog”

Be a Goose

I have always lived under the Atlantic flyway. Every Fall and Spring of my childhood, my father would call me outside to listen. The geese were migrating, flying high. In the Fall their call was the most mournful and forlorn thing I had ever heard. Funny how that same call in the Spring was so joyous and hopeful. The geese are going North! Winter is nearly done.

In real-time it is March. Walking the dog tonight I stopped to listen to two flocks. They were flying high. Headed north. Spring is on its way. Life and hope are coming to the North.

You can learn a lot from birds. Do you know why geese migrate in V formation? It turns out the V is aerodynamically efficient and conserves the energy of the individual birds. Another fact is geese take turns flying point. Cutting the path is tiring. When the lead bird is weary, he drops back and another goose takes the job. Teamwork at its finest.

End of ornithology lesson.

Started reading an article on suicide for continuing education credits. (Geese and suicide all in one page? Hold on. I will tie them in.) I am only about a third of the way through the article but have already picked up a few interesting points. For example, the highest risk group for suicide is between 45 and 65. The next most vulnerable age group is the over 85 group. That sounds like the ages of many of us.

Chronic illness is a factor in suicidality. While pain is closely aligned with thoughts of suicide, suicidal ideation also increases if people believe they are a burden or if there is a traumatic event. Like vision loss, for example.

The rate of accomplished suicides is higher in the elderly. One more thing age and experience has taught us to be better at. Yikes.

Other factors listed by Van Orden et al are things like living alone, mental illness and grief. Also listed were frailty and a generation bias against seeking treatment for mental health.

Another thing I learned was not surprising but definitely worth mentioning. Social support and connectiveness decreases the risks of suicide. Having a social network of supportive people is protective.

Which circles me right back around to geese! Geese migrate successfully because they do it as a flock. They help one another out by trading off who is on point when they fly. Another thing I did not mention, about a flock on the ground. Have you watched them? Did you notice there is always at least one head up, looking around and on guard? (Alright, so I  lied. The ornithology lesson was not quite over.)

Page points are: 1) in Spring, geese are a sign of renewal and hope. Also they are an excellent example of animals working together for the good of all.

2) Older people with chronic conditions are at greater risk for suicide. Social connections are an excellent protective factor.

3) Be a goose. Have hope. Get social support.

Told ya I could tie them together!?
Continue reading “Be a Goose”

Good Knock on the Head

I am going to just prattle here for a while. I seem to be at loose ends. Cannot really get motivation to do much of anything….so I will spout nonsense to you!

Not a bad day. I was in Zumba and then yoga this morning. One of my ‘gym buddies’ and I were talking about cycling season being here soon. Being stubborn and set in my ways, I don’t wear a bike helmet.

She suggested a good knock on the head would put my eyes to right. When I told her there was not much left to put to right, she got upset and started talking about fairness.

Fairness has nothing to do with it. Except for some blood pressure issues that are hereditary, I have good health and no bad lifestyle choices that would have led to AMD. Deserve it ? No, unless you consider AMD the result of bad karma or some such thing. AMD is not a punishment. Good vision is not some sort of reward for a virtuous life. To be trite and use cliches, shit happens and it is what it is. Dwelling on what you did to deserve a progressive eye condition is counterproductive.

Still, people often want to tell me I got a bum deal. I guess I should take it in the spirit in which it was intended. They could be telling me I deserve all the bad luck I can get!

After the gym, today was errand day. Off to the drug store! My husband worships convenience and thinks I should change drug stores. Mine is close to the office but not the house. I like my pharmacist and I am not changing. Some losses are inevitable with AMD. Many are not. I am keeping my drug store.

I do try to insert variety where I can, though. Too much same old, same old drives me crazy! Lunch was chicken and snow peas. I like them and don’t often get them. There are little ways to shake things up.

Then off to get a haircut. I have become very trusting of the stylists. I have discovered you cannot micromanage people when you cannot see what is happening.

I just assume they have done a good job because I cannot see myself in their mirrors. If any of them were really perverse, I would be in trouble!

Since I have my haircut at Walmart, I hunted up the box and put two, old pairs of glasses in it. Did not actually take a lot of hunting. It was right there in front of the desk. Made me feel good to be striking a blow against preventable vision impairment. Walk the walk as well as talk the talk; ya know.

That was pretty much my day. Like I said, I have had a heck of a time getting motivated today. Played a lot of Panda Pop on my iPad.

Tomorrow the new washer comes. The piles of dirty laundry are getting a little high. As my mother used to say, we seem to be either the cleanest people there are or the dirtiest. I haven’t had a washer for a week but the piles look like they should be for a month. That should give you some idea of how I am spending tomorrow, motivated or not. I have laundry to do.

Continue reading “Good Knock on the Head”

This Mortal Coil

Good natured teasing, I have always believed, is a sign of affection. Therefore I did not get upset when people in yoga laughed and said I want to keep up with the 20 year olds in class. Besides, it was true. I do want to keep up with the 20 year olds! (Actually, I can outperform some of the 20 year olds, but in those cases, it is their issues and not my ‘talent’ that are causing the situation. I find that very sad.)

I am not sure if I have ever acted my age. I know that right now, at 63, I don’t want to act my age. I don’t want to act my age, or perhaps more precisely act like a 63-year-old woman with a visual impairment, because I don’t like the stereotype. The stereotype says we are a bunch of stick-in-the-muds who have no fun! Also, we are helpless and lacking in many skill areas.

Seriously. Think of what people think older folks can do. Then think about what people believe the visually impaired can do. Not much, right? I do not want to be limited like that. Time to bash some stereotypes.

Not only does thinking you have to be the ‘proper’ senior with vision loss interfere with living, it also interferes with LIVING, as in how long you “shuffle around this mortal coil” (The Bard again in Hamlet should you be curious). Younger thinking people live longer.

Really. University College, London ran a study that showed more people who thought they were three or more years younger than their ages were alive after a few years than people who thought they were older than their age were.

Now, granted, the article did not say why people may feel older than their years. It may be there were diseases making them feel older. I am assuming since University College is a respected institution they know how to run a study and control for such confounding variables. I am going to assume it was a well-designed study and take their findings at face value. Why? Because they serve my purposes, of course!

Dr. Sharon Horesh-Bergquist has done a study that found internalizing ‘ageism’ notions is bad for your health. The way you think of aging will influence how you age. If you believe all those stereotypes about old folks, you will age poorly.

In another study, people in Ohio who were proud of their ages and thought they were useful and happy lived 7.5 years longer than their pessimistic peers. I would take that. Better than the alternative.

So there really is such a thing as a self-fulfilling prophecy when it comes to aging, disability and, yes, even death. Believe you are no longer competent and able to engage in life and that is exactly what will happen.

Which brings us to the thought questions: how have you changed since your vision loss? What have you given up since your vision loss? What do you no longer do ? And now the kicker: what have you given up solely because old, low vision people don’t do things like that?

Continue reading “This Mortal Coil”

Funny Glasses

Hi! In real-time welcome to March, 2017. It came in like a lamb. Very mild. I have heard the robins calling although I have yet to see one. Does not mean the end of Winter, of course. I dug a robin out of a snow pile one year. Bird hypothermia.

If anyone is keeping track, the washer is done, kaput, dead. We could resurrect it for $400 or buy a new one for around the same price….yep. Going shopping after work on Friday.

The repair man said I should have run the clean washer cycle regularly. He said I should have known that from reading the manual. Read the manual? What planet is he from? Does anyone actually read the manual?

And to segue off from that, I have been reading about eSight glasses these past few days. A couple of pieces on them have been in the media. People keep giving me the articles and suggesting I look into buying a pair. For $10,000.

My friend who – bless her – cares about my welfare and has so far thought both the Argus 2 and statins would be just the ticket for me, said I should not worry about the money because the eSight glasses could give me my independence back and allow me to drive again. Wrong. No, no, no.  Although later reading I have done confirmed what she said about the image focusing on my intact section of retina, that same reading also confirmed what I said. To wit, the glasses use magnification as well. Magnification screws up your perception of distance and of speed.

You cannot use magnification and drive. Very often you cannot even use magnification and walk fast. Long paragraph short? Do not buy the eSight glasses and think you can drive. Not happening.

Otherwise, though, they sound promising. American Federation for the Blind did an article on eSight glasses, along with Smart Glasses, for the AccessWorld magazine. The eSight glasses magnify up to 14x. You can make color and contrast adjustments. You can also determine if what the camera is picking up should take up the entire display or just a part.

I refer you to the AccessWorld article for more information. The newspaper article on the glasses was for the Associated Press and written by Michael Liedtke.  The online article I was given was entitled High-tech Glasses are Helping Blind People See.

Of course, unless you have discretionary funds coming out of your ears, $10,000 is quite a bit to spend on a pair of funny glasses. While the price has been coming down, the burden of cost remains all on the consumer. Insurances pay nothing.

A possible loophole I found is clinical trials. eSight has already done one clinical study with the results due out this spring. If the company decides to do more studies, they will need test subjects and test subjects will be given glasses. Are you following my devious, little mind? Some of us may be able to get free glasses in return for being in the study. Not sure it is even remotely possible, but if you are interested, check it out.

So, that’s that. Who wants to be in the Geordi LaForge look-alike contest?!? Continue reading “Funny Glasses”

Special Favors

This evening I am staying home. It is normally a Zumba night. Did I want to go? Absolutely! Still I turned down a ride. Why? Because she would have had to make a special trip to get me.

I am really struggling with this. Every fiber of my being wanted to go to class. My ride volunteered, but she was already at the gym and would have had to leave, pick me up and go back there. So I turned her down.

Some people don’t have a problem with asking for and taking special favors. My ride home from school is a club advisor. Tonight we took a student home. Five miles in the wrong direction. Wasn’t the first time. My friend felt used. I don’t want people to feel used.

So where is the line between a doable favor and a burden? Where is the line over which people feel used? I looked online and found page after page of sites telling you how not to be used. How about a site that tells you what is an acceptable request and what is going over the line? How about a site that tells you how not to be a user?

With rides I try very hard to make sure they are going my way to begin with. My usual rides home from school both live within a mile of our house. To me that is not excessive. Is it?

I try not to lean on any, one person too much. My maximum burden for anyone is three trips a week. Most of those three times include a there and back combination. Is that too much?

Where is the etiquette book on this????? Etiquette says to do as much as you can to ease the burden. I try. I am always ready on time. I wait at the bottom of the driveway. It says to consider your task and the person you are asking. How is that match? Usually good because they are going to the same place.

I am thinking I need something a whole lot firmer than what I have. People are fantastic and I want them to keep being fantastic. Yes, there is self-interest here, but I also want them to not be inconvenienced either. Neither of those things will happen if I over use people or take advantage of their generosity.

‘Tis a dilemma, so I am throwing it out for discussion. What is too big of a favor? When should you not ask? When should you refuse an offer? What are the rules on this???????? Continue reading “Special Favors”

Our Mission

Just got a comment via email. It was enough to make me blush and puff with pride…then wonder how the hell I am going to live up to all that!!! My heavens! Thank you!

Then I started wondering about ‘mission’. Ever been part of a committee writing a mission statement? Don’t be! They are killers. Still, every endeavor should have some goals; right?

Today I was waiting for sixth grade to come in from recess. One of ‘my’ kids, a lovely young lady, stopped to tell me she had seen me in my glasses. She meant the telescopic ones I use to do classroom observations.

I started to think what my being in school was doing for – or maybe to! – our kids. What I came up with is I am helping them to be comfortable with the visually impaired. I am helping them to normalize vision loss.

In sociology normalization process theory relates to the social processes by which new ways of thinking, working and organizing become routinely incorporated in everyday life. In my case it does not mean to make the different into ‘normal’ people (in my case, I believe that may not be possible!?) but instead to allow others to see us as just part of normal life.

I get a kick out of the acceptance and ‘ownership’ the students have of my vision loss. The other week a new student asked if I had virtual reality glasses! Not hardly. I stopped to give him the Cliff Notes version of the talk on my assistive technology. A couple of his classmates joined in and helped me explain the situation! For them, it is pretty routine.

If I had to define our ‘mission’ here, I would have to say part of it needs to be normalization of vision loss. Acceptance. Not complacency with avoidable blindness or an attitude of throwing up your hands in the face of unavoidable blindness. We cannot stop fighting vision loss and say it is inevitable. Instead I would like to see us work towards a more generalized acceptance and understanding that there are millions of us and we can and should be part of the community. The more we get out there, the more we will be part of the social landscape. As we adjust to our vision loss within our society, society can adjust to us.

So that is my thought on one destination for this journey we are on. Normalization of low vision in a community. How can we get low vision out of the closet?

The person who wrote that lovely email talked about being more open with people about her vision loss. She also talked about starting a local support group! I am thrilled! One person can make a difference.

And if one person can make a difference, what can an online community – physically spread out across the globe (I still find that a wild concept to wrap my head around!) – do together/separately?

What is your mission? Continue reading “Our Mission”

The Cowardly Lion

My yogini generally starts class asking everyone to set an intention for the class. Pretty standard stuff in yoga classes.

Saturday she started class by asking what we would want to ’embody’ on and perhaps even off the mat. That got my head going. After wondering if I should channel Wonder Woman or Supergirl, I started thinking about the virtues.

Which virtue would I want to embody? Which one would suit not only my personality but also serve me the best?

To begin with, I wasn’t even sure what is considered a virtue. I went to Virtues for Life and found a list of 78 of them. (I think. I lost count. Twice.) That was a lot more than I thought there would be. Which made me wonder what the definition of virtue might be. After all, a whole lot of things seem to qualify.

According to the online dictionary a virtue is “a behavior showing high moral standards.” It could also be “the seventh highest order of the nine-fold celestial hierarchy”, but I have no idea what that means. We will therefore stick with definition number 1.

Virtues run the alphabet from acceptance to wonder. They also go from determination to flexibility and detachment to enthusiasm. Hmmmm. Maybe it has to do with how well the virtue matches the situation? If it doesn’t match and ‘work’ then the virtue is not a virtue? Yes/no/maybe?

Anyway, leaving the really heavy philosophical lifting behind, which of those 78 virtues do you think you would need to embody to get through the day? Which ones do you lack but you think it would be helpful to have?

I know I am obstinate, stubborn and pig-headed. Dressed up to look pretty, that is determination. I use that a fair amount.

I could probably use more of the flip side of determination. Especially now that I am older and have low vision, I could probably use more flexibility and acceptance. In the words of those wise philosophers, The Rolling Stones, “you can’t always get what you want but if you try sometime, you just might just find, you get what you need.” Being open to other possibilities and trusting the Universe to provide good alternatives is not a bad thing. Sometimes it just takes a little courage.

And speaking of courage….Experiencing vision loss, I believe we all have embodied courage. We just may not recognize it. Being courageous is not an all or nothing thing. Sometimes we express it and sometimes we don’t but it is always there. Think the Cowardly Lion. He needed a medal to recognize it, but his courage was there all the time.

Going back to speaking personally, I have a tendency to be pretty confidence. Go ahead and read arrogant there if you wish. I am self-aware enough to know that. After 63 years, it comes as no surprise.

However, what also comes as no surprise is life teaching the lessons I need to grow just at the time I need them. Humility? You folks are (trying ?) to teach me humility. AMD limiting my abilities just makes me mad. Then I feel ‘noble’ fighting it (See? Arrogant.) Hearing your stories, what you are going through and the kind comments you make? Those are humbling.

So back to the question: which virtues do you think you need to embody to get through? Make yourself a ‘medal’ and pin it to your underwear. You just might find you have had that virtue the whole time!

Continue reading “The Cowardly Lion”

Out of Gas

I ran out of gas about an hour ago. Right now I am coasting into an early bedtime pretty much on fumes.

It has been a busy week! Sunday I attended two, blues concerts in a local town. The region is trying to be a destination for those who enjoy the arts. Doing well on that goal. Monday I skied for four hours and did hip hop class for an hour. Work, doggie walks, a little housework and a few more exercises classes later and I am fried. Extra crispy.

There is a doubleheader, yoga class tomorrow afternoon. I would love to go, but I am not going. My knees are whimpering. There are things to do at home. I am ready for a semi-restful day right where I am. Home.

I love being busy but there is such a thing as balance. Just like I cannot sit and stare at the walls 24/7, I cannot go screaming, full tilt 24/7 either. Every once in a while I need to say ‘enough’. (OK, it generally is I say ‘too much’ but you get my drift.)

Many of you may feel you get too much downtime but rest is not a bad thing. Not a bad thing at all. Going back to dialectic philosophy (who said this site is not educational?!?!??), opposites define one another. You cannot understand the light unless you have experienced the dark. We need an appreciation of both to truly understand either.

So, if you are getting too much down time? Rev it up! Too much going on? Calm it down a bit. You know your own balance point.

As I said, rest is not a bad thing. While you may see Sanja Gupta and Deepak Chopra as more media folk than experts, they do make a few good points. Quoted in 4 Surprising Benefits of Rest, these gentleman point out there is a lot of you that doesn’t get any attention when you are too busy with outside events. Give yourself time to experience yourself and see what is inside.  Rest can also help you be a better problem solver.

Going on to more – what? Mundane? Practical? – reason for rest, you need sleep to consolidate new learning. A dozen different sites will tell you sleeping after study will give you a better chance of retaining the knowledge. Exercise tears down muscles but a rest day allows your body to build them back up. Bigger! Stronger! Better! Rest reduces stress which reduces the stress hormone, cortisol, which helps you lose weight.  Also, without sleep, your organs all shut down pretty much at one time and you die. Ugh. Pretty practical reason for sleep. (Why? They are working on that but so far it is looking like sleep is when the housekeeping unit goes to work in your brain. Without sleep and cleaning, everything goes on the fritz in the control center that is your brain. Massive organ shut down. The end.)

So yes, I am now going to exercise in a different manner. I am exercising discretion, getting a nice, long night of sleep and taking tomorrow to stay home, get some things done and not do any strenuous exercise.

activity<–>BALANCE<–>rest

Continue reading “Out of Gas”

Full of Lint

Earlier in the week I offered a housekeeping tip. I actually have another one! Make sure the vent for your dryer has been cleaned.

The clothes washer has not been working properly, won’t spin, but even taking that into account, the dryer seemed to be taking forever. The one thing I know we can do for ourselves is clean the vent hose so I asked my husband to do it.

It was sort of full of lint. We all know that that is another invitation for a fire, not to mention a lot of wasted electricity and money from long drying times. Time flies when you are older and it just may be your dryer vent hose has not been cleaned within the recommended year (even though you could swear you did it last week!).

Do me – and yourself – a favor and clean the vent hose. Fires are bad for anyone but a fire and low vision could be nasty.

That, however, does not solve the problem of the washer that will not spin. That will require a repairman. Hopefully it won’t require a new washer.

Which got me to thinking: is there a way to get free appliance repair for those who are low vision or blind? Did not find that but – glory be! – I found a possible way to get free replacement appliances!

The Low Income Energy Assistance Program (LIHEAP) is allowed to replace your appliances. This is not guaranteed because all of the money comes out of the same pot and is often spent on things like home heating, but if you need an energy efficient refrigerator or washer, it would not hurt to inquire.

Qualifications are pretty much what you would expect. You can not earn more than 150% of the poverty level or more than 60% of your state’s median income level. In other words, a pretty low income is required.

Other than replace energy-hog appliances, LIHEAP helps people with energy bills and weatherization. The whole idea is to reduce the amount of income that is spent on energy in the home.

Now, obviously I would not qualify. I will have to get my washer repaired on my own dime. However, those of you who are living on limited incomes may wish to call 1-866-674-6327 and inquire about the program. This number belongs to the National Energy Assistance Referral project and it is manned from 7 a.m. until 5 p.m. mountain time. That would be 9 to 7 eastern time, 8 to 6 central and 6 to 4 Pacific time. Any other time zone? You are on your own.

Hopefully that nugget of information will give you one other possible resource for getting through this AMD mess and all the not so little messes that may have come along with it. Disabled and “of a certain age” too frequently go along with low income in America. Anything that can make the financial struggle a little easier can be a good thing.

Me? I call your friendly, neighborhood appliance repairman first thing Monday. I have laundry to do. Continue reading “Full of Lint”

Low Vision Pet Peeves

Hey! Pet peeves about low vision. I just spent 10 minutes looking for something that was in the first place I had looked. Poor contrast. What are your pet peeves?

I found someone who is blind – as opposed to low vision –  who had written his pet peeves with sighted people and posted it online. Now as a former, fully sighted person, I have to be a little defensive about some things on the his list. Things like extending a hand to shake are pretty much habit. Being afraid to say something like “ya see what I mean?” is trying to be P.C. It is not not trying. It is trying too hard.

I agree with him that people asking if you want to feel their faces is just plain weird. Fortunately that one has not happened to me. I also agree that games like “tease the blind guy” are cruel and should merit corporal punishment. Likewise, I agree we are losing our sight and not our hearing or out wits. People don’t have to shout or use single syllable words. (In fact we just met a retired lawyer, well into his 80s, at a concert. I believed he enjoyed my friend and me immensely. Why? Because when he verbally drew his sword, we drew our own and parried. As a former trial lawyer, he misses the good fight.

I don’t need good vision to ‘sword fight’ like that. It was a hoot! Low vision does not mean no brains!)

I am with the pet peeves guy on people who just come up and start talking. Happened yesterday at yoga. She just came up and started talking. I blurted out “I can’t see you.” No sorry or by your leave. Just came out. I thought I was a bit rude. Did not mean to be, but it happened. Turns out I do know her and she knows I am low vision. I’ll put the blame on her.? Could never be my fault! ?

The one peeve I have seen on other lists about the sighted (apparently sighted people are horrible. I never realized that when I was fully sighted) and appeared here as well was pity.  I will agree with that.  People who tell me they would rather have their painful illness than my vision loss because my life must be horrible get me.

A blurry hole in my visual field as opposed to pain so bad you can’t stand up or sit down or get comfortable to even sleep? Bring on the AMD! At least it lets me sleep at night.

Then there is the ever popular: “you don’t have to help. I know things are hard for you.” Granted, I can’t do everything I used to, but I would like to help. Give me something I am capable of doing. Let me chose my task. Sitting there twiddling my thumbs and smiling is not good for my self-esteem and to top it off, it is BORING.

This did not start out as a missive about those pesky fully sighted people but that article got me started. I love my people. Out of the blue an acquaintance I see a couple of times a year offered to come and drive me to ‘Mom Prom’ (over 21, female only, buy a gown at Sal Val and go dancing. Actual motherhood optional) in April. Why? Because she knows I love to dance. My friend today drove 40 miles to go with me to a concert. Bless my people! I would be lost without them.

That said, sometimes the things people do and say get to you. And the little irritations of low vision get to you, too. And that, my dears, was where I was planning to go when I started this piece. So, discussion starter: what are your pet peeves about low vision? Continue reading “Low Vision Pet Peeves”

The Truth Is Out There

Another Saturday afternoon that I don’t feel like doing a cursed thing. In DBT this week we talked about not discounting positives in life. To practice what I preach I would have to say I exercised, fed and walked the dog, cleaned up and fed myself. I have tried to do dishes in the dishwasher but the top rack stuff did not get clean. Last time this happened, I poured a whole bottle of vinegar in the bottom of the machine and let it sit over night. The acid ate whatever was gunking up the works.

Hey, housekeeping tip!  We aim to cover all possible topics. Even those I know little about!

I continue to look for an answer to how many degrees of arc make up a central vision loss. Dr. William Goldberg in A Guide to Understanding Your Peripheral Vision says a normal visual field is 170 degrees. That is almost half a circle. Of that, 100 degrees are peripheral vision. 70 degrees are central vision. If you think of a protractor, that would take a pretty good chunk out of the middle, but you would still have 50 degrees of arc on either side of that wedge. Not as bad as some representations I have seen.

No clue if I am figuring this out correctly, but it’s a place to start. I asked the representative from the International Macular and Retinal Association the answer and she did not know either. She is going  to ask around.

Peripheral vision is broken up in three sections: far, middle and near. When we pick a preferred focal point for eccentric viewing, we naturally try to pick a place in the near peripheral. Color vision and discrimination are worse on the edges.

I have a couple of more in-depth articles to read on that. To be continued.

Still interested in the Nat Geo article on ending blindness. I learned all sorts of stuff about the eye. Did you know the eye is the only place you can look right at the brain without drilling a hole?  Eyes are a part of the brain!  During fetal development the eyes grow away from the brain, sort of like on stalks; maybe? The stalks analogy was mine.

Eyes, like the brain, are immune privileged. That means it does not have a strong immune response to ‘invaders’. You want to try a new treatment and don’t want the immune system to go crazy? Try it in the eye. Having the ‘perfect’ place means all sorts of studies can be done in the eye. More experiments mean more chances of finding cures. Stem cells and gene therapies all have a better chance of working in the eye so why not start with trying to cure an eye disease? Great idea!

One more time, if we have to be losing our sight, this is the best time in the history of man to be doing it. Keep the faith. To quote Mulder and Scully, “the truth is out there”. We are hot on its trail! Continue reading “The Truth Is Out There”

Call Tech Support!

Hey, there! Hi, there! And the sun sets on another Wednesday.

Had a small crisis today. My ZoomText went down. Just about gave me heart failure and put me out of commission for over an hour. I just get so much done when these things happen!?

Apparently they were hacked and a slew of certificates (proof you purchased the product and are allowed to use it) were stolen. They told us weeks ago and I thought our techs and I had put the proper things in place. No such luck! Today they pulled the plug and my ZoomText went ‘poof!’ Arrrrrrrrrrgggggghhhhhh!

Note to self: write the tech support number in BIG numbers and file it. When they wrote their contact and help pages, they apparently assumed ZoomText would be working for that consumer to read them.

Honey, if I need help, my ZoomText is not working and I cannot see that teeny, tiny font on the support page. I mean, really. These people make software to support the visually impaired. Don’t you think they should think of these things?

Anyway, once I scouted out the support number and waited on hold – long distance and no toll free customer number; fix that please – for about 20 minutes, I got a lovely person who took over my machine and fixed my problem. Yippee!!!!!!

Made me stop to think, though. I had a minor panic attack and I have resources. I have techs at both jobs and I know enough to search for support numbers. What do people with no ready tech people do?

Granted I pay for the – nom de plume here – Nerd Brigade to consult with me when I have a tech crisis at home, but they cost $$$$$. Lots of people do not have money to pay for tech support.

Maybe we could get some of the colleges to set up free, tech support for the visually impaired. Maybe they could get a grant to set it up and man it!

Maybe I see the germ of a great, new project here for somebody. Anyone know somebody who knows somebody who would like to take this on? Free idea! Service project! Someone has to know a college sophomore somewhere.

So that was part of my day. Teaching our absolutely wonderful DBT group was my morning. Can’t exactly say the day improved as it went on but all is well that ends well. I got my ZoomText back in commission.

Get to do the one at school tomorrow. One delightful challenge after another. Oh well, keep on keeping on. Somebody’s got to fight the dragons! Continue reading “Call Tech Support!”

Bored, Bored, Bored

I have now been snuggled in my cozy, little home with bad weather outside and a sick husband in the bedroom for over 24 hours. I have consulted with Lin. I have done laundry. Vacuumed. Sorted mail. Played my game. I am going insane.

The sick husband really is not the problem. He generally crawls in a hole and either gets better…or dies. I am the problem. I cannot find a thing to engage myself. What I should do does not interest me. What I want to do? Sure the hell is not in this house.

When I am bored I want to eat. Sure sign. When I do retire I will need to watch my intake. Instead today I have been going through the diet soda. Dropped the cap and got to clean out under the couch. Howard Carter-style. Crawling on my belly and looking for ‘treasures’.

Somehow the cap had bounced onto a cluttered (I have told you numerous times I am not the domestic type) shelf. Found the cookbook there, too. Not, if that was a suggestion from the Universe, that I will take the hint.

Beastie Baby is likewise bored. She has stopped following me around…Did I mention I also bounce from task to task and room to room when I am bored? She is now on her Serta Perfect Sleeper puppy bed. Occasionally her head pops up to see if I have given in and decided to brave the elements just to get OUT of this house! If I do, she is there!

Wikihow suggests several different things that might help being bored. You can make your task into a game. Stand away from the washer and throw the dirty clothes in. Two points! And the crowd roars!

You can get creative and imaginative. Dance with the mop or the vacuum. This is Dancing with the Stars!

You can make lists and challenge yourself. How many things can you check off in the next hour? If you reach your goal, you get to reward yourself.

What did you used to enjoy? Are you able to go back to those things? Vision may not allow for some of it, but revisiting old interests can be a way of eliminating some of the tedium.

Then, of course, there are new skills and interests. Even if it is something you swore you would never get into.

I always swore I would never chase a little, white ball around all afternoon but taking a golf lesson would be better than prowling around the house like a tiger with a sore paw!  I could dig out the Wii and practice my putt. I think I have golf on my sports disk.

Right now I can handle a day like today because I know it is not the norm. I have a full week to look forward to. Even a blues concert next Sunday. The rub comes when you look at a seemingly endless series of those days one after another. Then what?

Not too sure, but I know it will have to be something and opportunities are slowly presenting themselves. For example, a larger AMD organization has expressed interest in having us do some things with them. There are opportunities if you are open to them. You – and I – just have to go looking.

….or, I could always write a blog. Continue reading “Bored, Bored, Bored”

“Yes, but…”

Hey, there! The good news is I seem to be on the road to recovery! My husband says it is because I rested like he said. My exercise-addicted friend says it is because of the fresh air and exercise I got this morning – cross-country skiing at the park! – and I think it might be both of those plus the cold/sinus medication I have been taking.

Combination of the old and the new. Best of both worlds.

More good news for me is I get to teach for another 12 weeks. It has been a couple of years since I taught distress tolerance so we decided to switch it up.

The ‘little boss’ suggested it. She is getting frustrated I have been waiting so long for the clinical trial. (I can sort of understand the sentiment.) Anyway, her thought was use me while they have me. Either I might have to spend time in Philly – or I might get very blind! Good first thought. The second one…

And guess where that leads me? Yep. My topic for this page.

I have done two pages on being unmindful of problems. DBT teaches us not to ruin the moment by worrying about when a positive situation is going to end. We are not to worry about whether or not we deserve it or what will be expected in return. (Don’t worry. A side benefit of my teaching a different module is I will be reminded of different topics!)

Whenever I ask in class how many people are masters of the “Yes, but” comment, 3/4s or so of them sheepishly laugh and raise their hands.

Let me tell you something: the rest of them are lying! I don’t think I know anyone who can say he doesn’t fall into that trap.

“Yes, but” has become so common some business publications have written about it as a syndrome. Somebody suggests a solution and we shoot it down. Someone says how well something is going and we doom and gloom him about what may happen next. What is happening here?

Because they are coming at it from a business angle, the publications say it is fear of stepping out of our comfort zones that causes “yes, but” syndrome. They say people reject brainstorming ideas because they are scary. Fear of innovation or more work or some such a thing.

All very possible in that sense. But how about people just in daily life? I, of course, have a theory. Not sure it is original, probably not. I did not look it up so if you know that this is so-and-so’s theory of whatever, let me know and I will credit him.

Anyway, my theory is we are trying to let ourselves down easy. What do you think? Does that ring true? I don’t want the gut wrenching drop when this is over, so I will keep reminding myself it is coming? I will let myself down in stages.

Problem is, do we want to diminish our good times like that? Why not savor them? Drink them dry and have the positives to remember!

Sound like a plan? Yes, and… Continue reading ““Yes, but…””

Come Ski With Me

Here I am again. Bored. Bored. Bored. My common sense is battling with my desires. I am still a snot bubble. Hacking, snotting, I am a beauty to behold. Anyone with common sense would have gone back to bed and pulled the covers over her head.

Wake me up when I am over whatever this nonsense is. Closed until further notice.

How well do you know me by now? I have no common sense! When I was small (and OK, when I was big too), my father would tell me that, for a smart girl, I was awfully dumb. My husband just suggested I not be a horse hiney. I had remarked that maybe, maybe I could use some of this beautiful new snow to go cross-country skiing this afternoon. Punctuated by hacking and coughing, of course.

Fortunately, there is one other person who has less common sense than I do. She is picking me up at 8 am tomorrow so we can get an hour of skiing in before we both have to go to work. I love irrational people!

I also love cross-country skiing. It is excellent, aerobic exercise. After you buy your equipment, it cost virtually nothing to ski. As long as you have snow, many people can just step out their back door and go.

Cheap, accessible and can be done by the visually impaired. Good combination.

Canada has a visually impaired, cross-country skier who has competed not only in the Paralympics but also in the plain, old Olympics. Brian McKeever was diagnosed with Stargardt’s Disease when he was 19. He lost up to 90% of his vision and, of course, what is left is peripheral.

McKeever skis. Oh, Lord, does he ski. Not only does he ski, he shoots. Aided by his brother as his sighted guide and some fancy technology, the man does OK. He has medaled numerous times in the Paralympics and won a spot on Canada’s able-bodied team. That was without the guide or the technology, by the way.

Simple fact of the matter is I have no more intention to compete than – what? Name something absurd – but if McKeever is doing what he does, why can’t I go out for a spin around the park? Other than the fact I have some disease right now? I think I can!

VisionAware has a list of tips for cross-country skiing with visual impairment. You need to choose an appropriate trail. If you are going cross-country when you cross-country, a GPS is a good idea. Managing glare is always a must and those of you with a significant vision loss need a guide who knows what he is doing and can give quick, informative instructions.

Except for the glare glasses, I really don’t need any of that stuff. I will be in the local park on flat terrain and we cannot really go far. I will do my hour’s loop and consider it time well spent. Good exercise, good environment. Good company. And it can all be had even with low vision. Sweet. Continue reading “Come Ski With Me”

Charmed Life

Just got another call from the transportation people. The first call I got had them picking me up a little after 7 to get to school by 8:30. (A long time in the van and they still get me there after the day starts). Now I am supposed to be picked up around 8. Thinking something broke down again. Lovely.

I am also sneezing and snotting. Double lovely. The last time I can remember being really sick (not of my own doing a la food poisoning!) was when the region went underwater a few years back. Every once in a while Mother Nature likes to let us know who is really in charge; you know. Anyway, I volunteered with the clean up crew and came down with a beautiful case of the ‘flood mud crud’. Germ cocktail coming at ya. Hopefully this won’t be as bad.

Which is a long-winded way of getting at my page topic: perseverance. When I was – literally – looking for motivation, I found not only James Clear’s page on sisu, the Finnish version of true grit on steroids, but also some stuff he had written on something very similar. Clear wrote about the mindset you need to have to keep going in adverse circumstances.

Clear wrote many people allow their failures to define them. I fail because I am a failure. Instead he suggests we should define ourselves not as people who are always failing but, instead, as people who are always striving.

Yes, I failed this time but I am a person who keeps trying. Clear says failures are discrete events in a life and no more.

Sort of: it is not the beads. It’s the string. Does that make sense? You know those charm bracelets they sell? The ones that you put charms representing events in your life? Each of those charms is just a discrete event but you are the bracelet that keeps going along and holdings everything together. Makes sense to me, but my mind is strange (withhold the snide comments, please).

So, that is the idea Clear put forward. It is not being late for work (as I am really, really going to be today). It is not coming down with a cold. It is not being told BOTH of the clinical trials you are signed up for are ‘stalled’ (forgot to mention that one before!). It is not even playing level 454 of Panda Pop and thinking you are never, ever going to get to level 455!!!

What it is about is showing up for the game. It is about persevering in the face of what appear to be overwhelming odds. It seems about defining yourself not by your failures but by your persistence.

In short? Keep on keeping on. Continue reading “Charmed Life”

Winter War

I hate to admit it but I spent a good hunk of Saturday afternoon eating ridgie potato chips, drinking diet Pepsi and playing Panda Pop on my iPad. Ambition? Motivation? Drive? Whatever you may want to call it? No, no, no and no. The veggie beef soup I had promised myself I was going to make was finally ready at 9 pm. That was fine with me. I was full of chips, anyway!

I had two reports – a long ‘un and a short ‘un – I needed to write. I must have found myself doing other things and put myself back on task two dozen times!

I finally got some interest in doing something productive Sunday afternoon. The real world was less than 24 hours in the future. I needed to get moving or I would be behind the proverbial 8 ball!

All this made me think of motivation. What is it? Why do we have it now but not later (or vice versa)? How do we cultivate it?

In true fashion I went looking for one thing and ended up with several, other, absolutely fascinating things that may be, at best, tangential to what is supposed to be my topic. You remember my topic: age-related macular degeneration; right?

First thing I found was the 1939 Winter War between the USSR and the Finns. I had never heard of it before but I was glad to discover it. I love history and I love stories about people with heart and endurance. David and Goliath sort of stuff.  In the winter of 1939 the Soviets decided they wanted Finland. They invaded in force without warning or formal declaration of war (unless you count leveling Helsinki with aerial bombardment as a warning! Bad form.)

The Finns were outnumbered and outgunned. Badly. Like 3:1 badly. Still they fought on in the dark and sub-zero temperatures. They had no other choice. They were children of the North and had been so for endless generations. The North is a hard taskmaster and she had taught her children to fight on in the face of ‘hopeless’ odds and appalling conditions. That was the way it was done.

According to James Clear in his essay on ‘sisu’, the Finns lost 70,000 people. The Soviets lost 323,000. The USSR sued for peace in the spring of 1940. The Finns had won. (Sisu is “a word that has no direct translation, but it refers to the idea of continuing to act even in the face of repeated failures and extreme odds.”)

Sisu is not easy to translate according to Clear. It sounds as if it is a cussed stubbornness. It is being too ‘stubborn’ and too ‘dumb’ to realize you are fighting a lost cause and ‘should’ give in. Emilia Lahti, a Finn herself, says sisu is all about facing challenges with valor and determination.  Sort of like taking the reins in your teeth and riding into the fray with guns blazing. Sisu appears to be the stuff of legend.

What does this have to do with blowing off an afternoon with a video game and snack food? Not much. I would suspect everyone of those Finns had had lazy days with zero motivation. No sense feeling guilty.

What does sisu have to do with AMD? Probably a bit more. Those normal, everyday Finnish people were suddenly faced with a dilemma that was neither normal nor everyday. They decided to fight. They reached into their souls and became equals to the Nordic heroes of legend. They became warriors. Not a bad trick when faced with an epic challenge.

Draw your own parallels. AMD is not 900,000 Soviet soldiers on your doorstep but it may be your Winter War. How do you want to be remembered? Continue reading “Winter War”

Murphy’s Law – Again

Murphy was a genius. Not only did he write the famous words, “Anything that can go wrong will”, he also wrote – or at least lent his name to – dozens of corollaries. There is Murphy’s first corollary which says “left to themselves, things tend to go from bad to worse” and the quantized revision which states “everything goes wrong all at once”.

Today my transportation plans fell prey to Murphy’s laws. I seem to have forgotten the corollary that says “if everything seems to be going well, you have obviously overlooked something”. I had gotten complacent. I just ‘assumed’ – as in ‘making an ass out of u and me’ – I would get to school and home and then to yoga and home and everything would connect just seamlessly. All fall into place as it were. Like the Erma Bombeck corollary: “anything dropped in the bathroom will fall into the toilet”.

The day started with the van breaking down. We had stopped on a steep hill and I joked the driver should make sure the brake was on. I did not want to roll backwards down the hill.  I am sure Murphy has some sort of rule that says be careful what you ask for, you just might get it. It would apply here in my story. Why? The emergency brake got stuck and so did we!

With waiting for the replacement van, taking other passengers where they needed to be and taking the first driver back to the garage, I was 45 minutes late getting to work. Not exactly an auspicious start to my day.

When I got to work, my usual driver for the ride home was not in her classroom. After the less than stellar start to my day, I wanted to make sure I had a ride. It was practically the end of the day until I found her, in a day long training in the other building. By that time I had asked my backup and my second backup and they were both unavailable. Oh, dear…

Thank goodness my regular driver was able to take me home. Even if we had not discussed travel arrangements for this particular day???? I could have sworn we did. Didn’t we? The only problem was, as a club adviser, she had to stay an hour and a half late at school…

I was amendable. Poor planning on my part does not constitute a crisis on your part.

I called the friend I walk with and cancelled. I was going to cancel out on yoga, but my friend insisted on coming to get me and running me to class. Bless her.

Of course, I get to yoga and my ride home is not there! She did say she was going; right? She always texts if she is not going; right? Jeez.

I was arranging plan B when my yoga ride came in. Got me home. Safe and sound with my nerves only slightly the worse for wear.

OK. I admit it. I have gotten a little too complacent. Things have been working a little too well and I forgot another corollary: “Anything that CAN’T go wrong will.” I guess Murphy just needed to shake me up a bit.

Only, now, Mr. Murphy, will you please just go away? Continue reading “Murphy’s Law – Again”

Kids and Zombies

This page is going to be another mixed up affair. I don’t have a full page on either of a couple of totally unrelated topics. Hope you don’t mind if I cobble them together.

First thought: I have talked about loving my big people and have not said anything  about my little people. Let me correct that.   I love my kids!

We may have an exceptionally tolerant and loving group of kids at our school, but I don’t think so. I think kids are just naturally adaptable and loving. It is the nature of the beast.

Anyway, my kids are wonderful. They take my telescopic glasses and CCTV in stride and think they are cool. My disability? Yeah, she doesn’t see well. What else is new? So what? Can we move on now?

The other day I was waiting for my ride, sitting in the office with all my gear. A little girl about seven was waiting for her mother. The little girl asked about my stuff and I first told her I have an ‘old lady’ eye disease. I think I am going to take this little darling home with me! Her response was “you are not an old lady!”

Then I told her I used the equipment to help me so I could continue to work with the kids at school just like I like. Her response? “Thank you”. OMG. I love my kids.

Second topic: Back to stem cells. Lin gave me an investment article. It was dated July, 2016. Mark Collins writing for marketexclusive.com suggested people invest in….drum roll, please….Astellas Pharma!

For those of you who just walked in, this is the company sponsoring one of the stem cell trials I am signed up for. I am thrilled to hear that this company is being touted as a good investment opportunity. It means the company is seen as a moneymaker. And how are they going to make money? By bringing the stem cell treatment to market, that is how!

Collins cautions this is a somewhat long-term investment. It may be two or three years until the product is brought to market, but the financial analysts are very positive about its future.

I am signed up for phase 2 clinical trials. If Collins is accurate in saying they should come to market by 2020, phases 2, 3 and 4 will have to come about in pretty short order. Good.

One more quick note: please remember RPE stem cells may stabilize vision. That means things won’t get worse but they won’t get better either. There is a bigger maybe for restoring some vision. Subjects in phase 1 got a few letters (not lines) on the eye chart back. RPE stem cells do not cure AMD.

Geographic atrophy, aka advanced dry AMD, means I have dead photoreceptors. Dead is dead. No zombies are produced in this procedure. That means it is not a cure. They are working on a cure but it is not expected for at least 10 years.

[For a review of what RPEs and photoreceptors do, see Sue’s page The Science Stuff.]

As always, I often do not know what I am talking about, so please check the stock tip with your broker….but if you make a billion dollars? Remember me! ? Continue reading “Kids and Zombies”

Fake It Till You Make It

Depression. We have hit this topic from several angles before. We are going to come at it again. Lin said there are a number of new people coming on and they are suffering.

These people are suffering with helplessness and hopelessness. Feelings of helplessness and hopelessness are closely aligned with depression. In fact, back in the 1960s Martin Seligman proposed the theory that depression is actually the result of helplessness. Beck has published a scale that measures hopelessness. The Beck Hopelessness Scale is a good measure of depression and also suicidality.

Hopelessness is the feeling that all hope has been destroyed. You are facing a dilemma that cannot be solved. Hopeless people see nothing positive in their future. They believe they are bereft of skills and options for getting themselves out of the mess they are in.

Ain’t they happy thoughts?

Anyway, some people feel that way when they get a life-altering diagnosis like age-related macular degeneration. They see nothing at all good in their future.

Beck Depression Inventory-click photo for larger image.

The Beck Hopelessness Scale is available online sans scoring. Take a look at it and if you agree with a fair number of the negative statements on it run, do not walk, to your doctor and ask him/her to help you get medication and counseling. You do NOT need to feel this way.

A good therapist should be able to help you deal better with what is ahead. Your therapist should help you to build positives and successes in life. Remember the old chestnut: nothing succeeds like success! What have you accomplished this far? What else can you expect to accomplish now? Go for it! Remember you are a survivor with many battles behind you. This is just one more.

If you don’t feel very accomplished or brave? Fake it! There are people watching. Be the person they will emulate during tough times in their lives. Show them what grace under fire really looks like.

It may be that your greatest accomplishment in life will be being a positive model for others. Show them how it is done.

It doesn’t matter if you feel like a fraud. It is the brave front they will remember. Besides, fake it until you make it works, so you will get benefits from your award-winning performance!

I am going to refer you back to all of the pages on DBT distress tolerance for more therapy ideas. DBT ‘borrows’ from some of the finest therapies there are and puts them all in a neat package, so I suspect you will find something useful.

Beyond that, find a way to build hope in your life. Speak with your religious adviser. Pray. Plan a party or a trip. Encourage others along their roads. Save an animal from the shelter. Plant a tree. Invest somehow in a positive future.

Other ways of investing in a positive future? Volunteer for a clinical study. Write your story for this webpage. Help others in the same fix we are in! Believe.

Progress is being made every day. The Audacious Goals Initiative project is alive and well, as are similar projects in other countries around the world, and funding research. Individual drug companies battle each other to bring new treatments to the market. It will happen eventually. The breakthroughs are coming. Believe. There is hope. Instill it in yourself. Instill it in others.

Continue reading “Fake It Till You Make It”