Category: Sue’s Musings

That Preachy Zealot

Here she is again, that preachy zealot for clean living! How are you all doing?

I was looking for new info on AMD and I found this article.

I know I harp on this topic ad nauseam but seeing this in the new releases I could not help myself. I am basically weak (and can be profoundly irritating?).

Anyway, a recent article on nature.com presented research suggesting AMD does not like clean-living folks. People working on the Blue Mountain Eye Study evaluated a group in the late 1990s and then again 15 years later. They looked at physical activity, diet, smoking and alcohol consumption as it relates to AMD. After all was said and done, the researchers decided it would be helpful if people could be encouraged to engage in good health habits.

They quoted data that women who eat well, are physically active and don’t smoke are three times less likely to develop AMD than women who do not have a healthy lifestyle. If you add the complement factor H at risk allele into the mix, the poor souls who eat crap, don’t exercise and smoke really don’t have much of a chance of dodging the disease at all.

What I just quoted was an older study, CAREDS. It used only women. The Blue Mountain people decided to replicate it but to include both genders. They also added alcohol consumption as a variable.

Blue Mountain concluded the combined effects of the four, healthy living variables were better than only one of the habits alone. They hypothesized each of the healthy habits helps to reduce oxidative stress and therefore reduce inflammation, generally thought to be a huge factor in the development of AMD.  [Lin/Linda: Sue talks explains what oxidative stress in her page Electron Rustlers.]

In addition, good health habits can affect the density of macular pigment. Thicker macular pigment can be protective. And BTW, levels of macular pigment can be negatively affected by obesity.

Since I always like to support our friends Down Under, I am making a pitch for healthy living just like the Blue Mountain people. Avoiding bad habits and developing good ones can decrease your chances of developing AMD. It can also reduce the rate of progression of the disease.

Hard to change habits? Absolutely. I am a carbs and salt girl. Horrible for me, but that is what I crave. I have never been a fruit eater.

However, since getting my diagnosis I am drinking a cup of fruit juice every morning. Enough of a change? I doubt it but at least I feel as if I am making the effort.

How long does it take to establish a habit? Google says 66 days. If you can change one thing in your lifestyle and stick with it for 66 days, you have dealt a blow against AMD. Lifestyle changes are one way we can take some of our power back from this disease. Worth a try. Continue reading “That Preachy Zealot”

A Cat Eating a Shoe

Slowly getting my stuff together. The change in phone carriers and the accompanying set-up have been accomplished. Even with ‘plug and play; I am just about hopeless to begin with and then add a visual impairment. Oy vay. The pool that was green because the pump was down is blue again and six days into the two weeks left to live prediction, Beastie Baby is acting like she never got the memo. [Sue wrote this in July.  Beastie Baby has since passed away.]

Not arguing with it. It is often good to be unmindful of coming sadness. If she can enjoy short walkies and cheeseburgers (yes, spoiled dog), why not?

If there is no averting disaster I see nothing wrong with dancing on the deck of the Titanic. Eat, drink and be merry for tomorrow we may die.

Planning my next ‘adventure’. Since the dog is elderly, etc. we really don’t want to leave her with a sitter when I go to Penn State. That means my husband drives me down and comes right home. I get to get a bus home. Happy, happy, joy, joy. My choices are taking eight hours – including a 3 hour layover – to travel 100 miles and end up at the bus stop in town here or riding the bus two hours to a town 45 minutes away and having my husband come rescue me there. I vote for option #2!

“You can’t get there from here” may not be a totally accurate statement but it seems pretty close. I will let you know how I do. I would like to say America allows freedom of movement for all, but I have a feeling things are not going to be that easy.

Lin asked me to download Seeing AI. Apparently it is all the rage right now and everyone is all atwitter about it. That said, apparently I am not that easily impressed. Seeing AI seems to combine the functions of several different apps into one. It does a better job describing scenes than some other apps, but bottom line once again is, it needs work.

Seeing AI did a nice job on identifying things on the fridge door as “food in a refrigerator” and the Beastie Baby truly was a “brown and white (and black!) dog on a bed”. Beyond that, we had some problems.

Two pairs of my husband’s shoes were “a cat eating a shoe”. Giggle. The app identified the concrete around the pool but failed to note the black inner tube or the pool just beyond. If I were totally blind I could have easily expected clear sailing, tripped over the inner tube and gone for an unexpected swim! Although the examples in the ads were things like “a 20 something girl smiling”, Seeing AI identified my colleague, a 30 something smiling girl, simply as “a person”.

I guess I have to say excellent start, good attempt, but I would not want to depend on this app to interpret my world for me. Too many chances to trip over inner tubes and end up swimming.

The app is absolutely free in the Apple App Store . The price is certainly right! Download it and try it for yourself. [It isn’t yet available for Android.  It was originally only available in the US and Canada but has recently been made available to people in the UK, Ireland and Australia.]

Check out a good review by Sam of The Blind Life on YouTube.

written July 19th, 2017

Continue reading “A Cat Eating a Shoe”

Your Good Fortune

I read something actually quoting me in another blog. Weird. Never thought of myself as quotable. Anyway, this person quoted me as saying this is the best time in the history of humanity to be going blind.

It really is. For one thing, we get to live! I had read it before but the American Action Funds article The History of Blindness states the blind were not seen to be good for much of anything. Blind babies were abandoned and left to die. Blind men were sold as galley slaves and blind women were forced into prostitution. In the middle ages the blind of Europe were shipped off to live in alms houses where they were supported through charity. Or not.

Judeo-Christian culture has not always been the kinder, gentler, warm and fuzzy thing we like to think it is. Encyclopedia Judaica nicely points out the Bible portrays the blind as being cursed. Great. Since all cases of blindness were attributable to God that meant anyone who lost sight had been sinful. I, for one, do not like where this is heading. As less than perfect people the blind were not allowed to be priests and there are some indications that, at times, they were not even allowed into the temple! How do you like that for a whole group being marginalized?

In the middle ages, some rabbis did not wait for God to punish sins. If they thought there was a crime, they did it themselves! Yuck. Really don’t want to do – or have done to me! – any eyeball plucking.

Things have been getting progressively better for us in the developed world who have low and no vision, but plenty of places it is still not great. You do not, I repeat do not want to have eye problems in India for example. According to the Indiatimes.com India has the largest blind population in the world and 75% of the cases are actually avoidable blindness! It appears there are just not enough eye docs to go around. In 2007 of the 37 million blind people in the world, 15 million were in India. Good grief!

Yes, they are trying, but they still have huge numbers of blind children. And without enough schools for the blind? There is not much of a future beyond being dependent on family or begging.

I would like to say India is a horrible exception to the rule for developing nations, but it’s not. It was said this state of affairs is repeated in every developing nations, just to a lesser degree.

So, yes, I repeat myself. This really is the best time in history to be going blind. And we in the developed nations are geographically in the best places to be. Thank whatever Power you believe in for your good fortune. Even being visually impaired and being able to pray is a gift. Two thousand years ago we may not have even been left into the temple.

written July 17, 2017

Continue reading “Your Good Fortune”

Whoopsie!

Whoopsie. Errata alert. I discovered the NaturalReader does NOT support Kindle like I thought [see previous page Jabbering]. This is because Kindle books are DRM (Digital Rights Management) books. Also iBooks, Nook and Adobe Overdrive. DRM is related to copyright laws. There are ways to get around the software ‘locks’ and you can easily find these offered on the web. However, they are illegal and we try not to encourage criminal behavior. Rumor has it scofflaws use something called Calibre. And that is what I know about that subject. ? [Lin/Linda here: I had to look up ‘scofflaws’ in the last sentence.  It is “a person who flouts the law, especially by failing to comply with a law that is difficult to enforce effectively.”]

I looked at Gutenberg.org and found titles like “The Paper Currency of England Dispassionately Considered”. Whoa.

Numismatists study coins AND paper money (thought it was just coins). Hopefully they would be enticed by that title. Me? Not so much.

So far on a cyber search of non-DRM ebook sources I find nuthin’. So for right now for ebooks on NaturalReader I guess it is Gutenberg.org or nothing. Remember if you are legally blind like moi, you can get BARD. I am just finishing listening to John Sandford’s Golden Prey. Love Lucas Davenport. Also, ebooks will zoom on a tablet so those with less of a vision loss can go that route. Sorry I fed you bum info.

And in other news, I passed the 100 mile mark on my bike today! This summer I have been using it for transportation. I realize for many of you your cycling days may be behind you; however, for those of you who can still ride and live in an area conducive to bike travel, it can be an option. Traveling at 7 miles an hour it is easier not to run into things than when you are traveling at 70 mph.

Of course, I almost had my first accident today. I was riding in the street parallel to some guy on a Jazzy (electric wheelchair) on the sidewalk. He decided he wanted to go across the street, swerved right and nearly took me out!

Maybe I should get a bell for my bike…or one of those horns with the red bulb. Anyway, glad I was able to avoid him. How do you explain being taken out by a Jazzy? It would be humiliating.

And because I am again prattling about things totally unrelated and of no great importance – and because I need about 150 more words! – I wanted to ask if you folks knew we are creating great investment opportunities? OK, maybe not us personally but I found a BusinessWire report on Global Age-Related Macular Degeneration Partnering Deals. They are hyping advice about buying into research and development of AMD treatments! They think people can make buckets of money off of us!

Now, some people may think it is rather opportunistic of these potential investors, but I think it’s great. The only way they can make said buckets of money is to invest in treatment we will buy. That generally means something that will work. If research is stirring up enough interest for people to be buying AMD specific investment advice, things have to be happening!

And that is the end of this page? Continue reading “Whoopsie!”

Jabbering

Greetings everyone! First of all, thank you for all of the birthday wishes [July 17th] and kind comments! I am amazed and overwhelmed. I sit here in my sun room, just kind of hanging out and having weird thoughts, and I sometimes forget there are real people reading the stuff. Probably better that way. I might become self-conscious. Not that that has ever happened in 64 years. No filters here. As in really NO filters. My mother used to ask me why I could not just LIE sometimes.

That said, nothing big planned for the b-day. Fighting rot and decay. I have my first physical therapy appointment for the rotator cuff tendinitis. Also, the container for the sand filter cracked and nicely soaked the garage with pool water so I am having the sand container replaced tomorrow.

Have you ever noticed you spend the first 40 years of life building and the next 40 trying to keep everything in working order?

My friend, the exercise enthusiast, and her family treated me to an escape/puzzle room last week. That was fun. We did the ‘tornado’ room. The premise is you have been hit by a tornado and you have to figure out how to open a locked door and escape before a second tornado strikes. This all involves finding clues and things you will need as well as figuring out a lot of ciphers. We ‘died’. We were only about ¾ of the way by the end of the hour and the second ‘tornado’ hit.

It was low light – a problem – and there were clues I could not read, but this is a team (up to 8) activity and I had people to do the fine seeing. I still have a brain and could sleuth out a lot of clues as well as have input on how to solve the puzzles. Enjoyed it. Would go again.

Low vision does not have to mean no fun.

And continuing to just jabber along here, I downloaded the Near Sighted VR app from Google Play. Lin sent me the cardboard goggles last week. My husband cut the hole for the camera to see through so it would actually be somewhere near centered. I downloaded the app. Nothing to that and the app is free, free, free! [Lin/Linda: it worked better for Sam at The Blind Spot and he says with some upgrades which he suggests, he thinks it will be an ‘awesome app’. Click here to see his review of it on YouTube.]

Not as enthralled with it as I was hoping to be. Not sure if the new phone (Hello, Moto!) does not have a decent camera or what the problem is, but I thought the image was pixel-y and a little wavy. Being a great one for motion sickness I am not sure I could use it very long without having an ‘incident’.  [Lin/Linda: there is also an app for iPhones called SuperVision Cardboard.  Click here for more information.]

Once again, although I would love to believe I am, I am not the final word on this stuff. I think we need other input on these products. Please let us know if you have tried anything and give us your input. My pans may be your picks and vice versa.

Last thing: I ran into a little gem called BookBub. They offer free and deeply discounted email books. Lin says she has used it for years and it is a good resource.

When dummy here set up her NaturalReader she failed to click on Kindle as one place she wanted to be able to download from. Cannot figure out how to go back and change the setting so I am in the process of also downloading the free version of NaturalReader. Hopefully I will be able to get into my Kindle account that way and give you info on how it works.

Once again, knowledge, insights, opinions? Please share. Support the cause. We are in this mess all together. Continue reading “Jabbering”

One Foot in Front of the Other

We recently had a reader ask how it is possible to maintain hope, faith and optimism, etc. when “everything” is slipping away. She stated she does not want this disease because she had watched it “destroy” others. Her friends do not want to associate with her because of the “doom” she is facing.

Oh, my…where to start. First of all, I guess I need to say “I’m with you! I don’t want the damn thing either.” But wanting it or not wanting it really does not make a bit of difference. We do not get to make decisions like that in our lives. We only get to accept (or reject, but if you fight reality, I can practically guarantee you will waste a whole lot of energy and in the end, still lose. To paraphrase “I fight reality, reality always wins!”). We also can find ways of coping.

That appears to be a magic word: cope. This is not a fatal disease. If you are still breathing and conscious, you are capable of dealing with things and trying to make them better. Your hope is in every breath you take. Breath.

Remember one of my favorite people whom I never met, Viktor Frankl, said “the last freedom left to any man is determining how he will react to his circumstances.” This disease will not destroy us. It may take things from us, but not destroy us. We destroy ourselves through our reactions to it.

Our reader may not realize it, but she IS coping. She reached out to this website. She has sought professional help and she is involved with the state services for the visually handicapped. She is doing what she can do.

We don’t have to like having AMD and losing sight. We don’t have to be happy about it. We just have to keep moving. I mentioned this before but another one of my favorite, never met people, Winston Churchill, said something like “when you are going through Hell, keep going!” It is in pouting and denying reality – in stopping in the middle of Hell – that we are destroyed.

To address the part about being hopeful, optimistic, etc, a bit more, there are times all of those pretty thoughts are going to desert us. Times there seems – as in appearances and impressions – there is no hope. Those are the times we simply put one foot in front of the other. Determine what is next and do it.

I have been told I am “in love” with DBT. I am, for the simple reason it works. Mindfulness and staying in the moment work.

For example, the Beastie Baby has been diagnosed with lung cancer, but right now she is sleeping peacefully on the floor next to me. Right now, life is good. We will take one day at a time, one hour, one moment if need be. We will not grieve (much) and ruin life when things are good. Lesson: stay in the moment. Deal with the now. By dealing with each moment as it comes, we can handle a scary future. Buying future grief and hardship is a bad investment.

I could address the absolutes – always, never, everything – but I won’t. Not much, at any rate. We just need to remember few things in life are truly that black and white, that cut and dry. Every dark cloud has a silver lining and every silver cloud has some dark inside.

This has been a little jumbled, but that, after all, is my mind. I guess in summary, what I want to say is:

Accept this is happening, Recognize you are not powerless, we all have choices we can make.

Understand if we take care of each moment as it comes, the future will take care of itself. Don’t get ahead of yourself.

We don’t need to be hopeful or optimistic all of the time (even though there is reason for hope). If you cannot muster any faith in your future, just put one foot in front of the other and move. You will be surprised where you end up.

Continue reading “One Foot in Front of the Other”

This and That

Hey, guys! No idea what I am going to write about. I will just start and see what comes out. I have an hour to kill before going to teach class.

Told you I renewed my driver’s license yesterday. That was sort of stressful. I tried to do everything ‘right’ so I did not end up ‘outing’ myself. I would not want to try to pass as fully sighted everyday. I guess the truth really does set you free!

Remember: I don’t drive. My stubbornness and vanity are not worth someone’s life. I just needed to feel like a ‘big girl’.

After that I went and made a physical therapy appointment. I need to bring this shoulder back to health. Right now it is cramping my style worse than the eyes. The eyes don’t hurt! The shoulder does. I thought I was being good, but it still aches. Try trying to be active but not using one arm. Grrrrrrrrrr……

After kayaking on Sunday (yes, I know I have a bum shoulder. It reminds me hourly), I went to the phone store and got a new cell phone. Two and a half hours later and I was out of there. In that time I had to go potty at least once. If the process went on for another half an hour I was going to ask them to order take out!

Anyway, the point is this: phone store people are very helpful. They will spend the time with you. I still have a lot of stuff to do on the phone but Ron, the phone store guy, gave me his number and he promised to walk me through it all. As soon as I figure out some of what the hey I am doing on this phone, I want to load the augmented reality app and see how it works as a magnifier.

If your phone is slightly older, like mine was, it might behoove you to invest in a new one. On the new one, Ron turned the magnification up all the way. If I do the three taps thing after that, letters can be ¾ of an inch high. The easier to see, my dears.

Three taps thing? Yep. It is possible on Android phones to tap the screen three times in quick succession and everything magnifies. Three times again and it goes back down. No one may have showed you that little trick. The younger generation believe tech knowledge is innate, not learned. They think we should know.

And now news some of you can actually use, they are finding more evidence that we may be better off doing genetic testing before we start drug therapy. PubMed recently ran an article citing research that the risk allele of the Y402H polymorphism in the CFH gene is related to less favorable outcomes when using bevacizumab (Avastin) or ranibizumab (Lucentis). (Quiz: What does -zumab as a suffix tell us? Answer: humanized antibody. I learned something!) The ‘in English’ version of that is this: if you have a certain variation on the complement factor H gene, your response to those drugs will be less than you expected when it comes to wet AMD control. If you are not getting desired outcomes with either bevacizumab or ranibizumab, you might suggest your doctor try another drug instead. It appears that, in some cases, if one of those drugs doesn’t work well, the other one won’t work well either.

Well, I guess I should stop prattling here. Need to get ready to go again. Type at you later!

written July 12th, 2017

Continue reading “This and That”

Someone I Am Not

Passing. Those of you who are into sociology or history know what that is. Wikipedia defines it as the ability of a person to be considered part of an identity group other than their own. Racially mixed slaves could sometimes pass as white when they came north. Over the years many gays have passed as straights. The term used there is generally ‘in the closet’.

I can still pass as a fully sighted person quite well. Yesterday I was at the doctor for my shoulder. Dr. Sue was right, rotator cuff tendinitis.

When I told the real doctor there were some things I could not see because of my vision loss, the doctor told me she never would have known. I passed well.

Today I went to have my driver’s license photo taken. I had everything ready. I sat there and listened to every question the people before me were seeing on the screen. I had my answers down cold! Yes, I am an American citizen! Yes, that is my date of birth. I looked at the yellow blob the photographer said was a smiley face and smiled for the camera. I passed as a person with acceptable vision.

Now, don’t get me wrong, I am NOT driving. Probably could. Slowly on familiar roads I could (no matter what my husband says!) I play this game in which I watch for on-coming traffic when I am in the van. 98% of the time I am right as to how many cars are approaching. It is that 2% that keeps me from getting behind the wheel.

When I told a teacher from school (you run into people you know at the darndest places!) what I had just done, he said it made sense to him to renew my license. Better safe than sorry. He thought in an emergency I could still drive. Yep, but that was not my main reason for renewing my license.

I renewed my license so I would not feel like a second class citizen. One of the same reasons blacks tried to be accepted as white and gays have tried to pass for straight. I did not want to be relegated to the back of the bus! Metaphorically speaking, of course.

Learned and thought about a couple of things. First thing: trying to pass is stressful! I was half expecting to be ‘discovered’.

The second thing was a something I realized. Light bulb moment. There is black pride and gay pride but no low vision pride! Why did I even feel the need to pass? I obviously don’t think the visually impaired me is ‘good enough’. I need to add symbols of what I consider to be a complete adult. Hmmmm.

THAT is something for a visually impaired support group to mull over. Thought I would throw it out in a moment of stark honesty and see what you think. I would suspect other people have felt ‘less than’ as well.

The other reasons I renewed my license are me being both practical and ever hopeful. Driverless cars are coming. It would be awesome if they were available to the general public in the next four years before this license expires. What if you have to be a licensed driver to drive one? I should have a valid license! And what if a miracle happens and they find a way to either biologically or technologically restore my sight? I need to be prepared!

So, just shoot me. I spent part of my morning pretending I was someone I am not. I passed. Pretty stressful actually. Between the shoulder pain and that, I need an early nap time. Tomorrow, I am back to being visually impaired.

written July 11th, 2017

Continue reading “Someone I Am Not”

Rock On!

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

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

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

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

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

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

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

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

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

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

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

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

written July 9th, 2017

Continue reading “Rock On!”

Piles of Articles

Long, holiday weekend. I am on the second day of four and have gotten pretty much nothing done. Oh, well. Procrastination is us.

Be that as it may, Happy Fourth of July whenever you may be!

Part of the ‘straightening up’ task for me is going through piles of articles I have found interesting and printed out. That word is actually PILES.

Just rediscovered one – Update on Genetics and Age-Related Macular Degeneration by Jerome Dunaierf – that has some good stuff in it. Did you know people with a parent with AMD have DOUBLE the risk of getting the disease? Make sure the kids get their eye exams!

Jerome talks about the complement immune system and does a nice job – much clearer and nowhere near as fanciful – in describing how the ‘friendly fire’ bit works. He shared the proteins that activate the complement system have been found around drusen. (Maybe a demented garbage men analogy would be better? Coming for the trash but hauling away the house?)

Jerome also talks about the ARMS2/HTRA genes. Enticing and mysterious those. No true clue what they do but we with AMD often have certain variants of them.

Other genes that seem to be somehow in the mix include genes that code for collagen formation, cholesterol formation and cell signaling. You might not realize it but the chemical ‘chatter’ going on in our bodies is deafening! Eavesdrop on that and we could intervene in amazing ways.

Jerome agrees with me lampalizumab will open up a HUGE market for genetic testing. (Probably the reason I kinda like Jerome). He shared it is now possible to sequence an entire human genome in a few days. The cost? About $1,000.

Wow. Have your code read and know exactly which drug is going to work on you. How far in the future before genetic sequencing becomes a requirement for getting health insurance? Ethical nightmare that.

And a little filler here: Pubmed published an abstract on a meta analysis of 10 trials about the risks and benefits of aspirin. Bottom line was this: aspirin can keep those of us with cardiovascular problems alive. Proven. Aspirin might, maybe, could have a negative effect on your AMD. The authors, Small, Garabetian, and Shava decided most of us would want to be alive. Their advice was to take your aspirin.

OK. A few more things off the pile. Time to wander off to something else. Maybe some housework. Gasp!

I am staying home from yoga today. Self diagnosis of rotator cuff tendinitis. Doctor’s appointment next week by which time I will not only have diagnosed but also treated myself!

My yogini is digging out a ‘no arms’ practice she found so I can try that tomorrow. Movement continues to be important to – and for! – me. Where there is a will, there often is a way.

That is what is happening here. Hope you are all doing well. Bye!

written July 2nd, 2017

Continue reading “Piles of Articles”

Thank a Mouse

This page is just me being inquisitive. If you are not up for me trying to figure out biochemistry, you might want to skip this page.

Looking at the medications they are using for wet AMD and the new treatment for dry AMD, lampalizumab, I noticed something.  Most of the generic names end in -zumab. What the hey? What is that????

To begin with, I discovered there are two suffixes, -ximab and -zumab.  Wikipedia actually has a whole list of medical suffixes but I am concerned about two right now. Those are the ones related to drugs for AMD. Suffice it to know that every suffix means something.  -olol for example will always mean a beta blocker. Of the two I am interested in: – ximab always stands for a chimeric agent that responds to more than one antigen;  and -zumab always stands for a humanized antibody.

See what I mean about just skipping this page?

Chimeric.  Now I knew what a chimera is. A chimera is a single organism composed of cells that should have made up multiple organisms. The organism  is made of genetically different cells. According to MedicineNet human chimeras were discovered when it was noted some people have two different blood types. The generally accepted ways a human chimera is formed are for nonidentical twins to share blood in utero or for one to absorb the other.

Once again according to Wikipedia, chimera proteins are produced through the joining of two or more genes that originally coded for two different proteins. The properties of the new derive from each of its ‘parents’. Naturally occurring chimera are often found in cancer cells; thus, it would appear, the wisdom of using manufactured chimera proteins to battle cancer (a genetic version of fighting fire with fire). Chimeric cancer cells happen because of random genetic mutation. Chimeric proteins in drugs happen by design. Read genetic engineering.

Forging ahead here, every drug ending in -zumab is a ‘humanized protein’. And, no, that does not mean it is kinder and gentler. It means that the base protein used in the drug probably came from a mouse. Generations of lab mice have had the very stuff of their being manipulated in the search for ways to improve our health. Think kinder thoughts about the little devils.

Because – actually two becauses – there are a lot of similarities between mouse DNA and human DNA, we can use mouse as the frame for our designer drugs. Because some of their proteins are foreign to us and would cause an allergic reaction, the proteins have to be ‘humanized’. Potentially offending sequences are cut out and replaced by sequences found in humans.

The idea is to produce proteins that will get into a sequence of reactions and somehow change it. In dry AMD lampalizumab weakens the immune reaction. Wet AMD drugs intercept the SOS message being sent by the eye. That is the one saying the eye needs more ‘supplies’ and new ‘supply routes’ (blood vessels) should be built.

So that is the answer to that burning question (you really were dying to know; I know). If you are taking a drug ending in -ximab or -zumab,  you are the beneficiary of altered protein sequences. Be grateful. Thank a mouse.

written July 1st, 2017

Continue reading “Thank a Mouse”

I Want to Be a Mutant

I want to be a mutant. Oh, not like the X-Men although it might be cool to be Storm. I want to be a mutant because those are the people who respond the best to lampalizumab.

A friend emailed me an Associated Press piece entitled Drug shows progress against vision-robbing disease in seniors. Although this was the first time I have heard this, according to the article, ‘lamp stuff’ doesn’t do a bit better in people with the specific gene mutation, it does a LOT better!

I had heard that lampalizumab produced a 20% regression in lesion progression. That, folks, appears to be an average.

Those with the complement factor I risk allele actually had a 44% reduction in geographic atrophy progression. Wow!

To me, this is the first BIG indication genetic testing and AMD treatment have to be closely associated. I really do NOT want to be poked in the eye with a needle every month if the treatment won’t do any good. Likewise, I will be more amenable to said needle poking if I know I have the gene and I can slow my vision loss by nearly half. Not to mention how insurance companies would respond if they knew they could save money by eliminating non-responders from the pool.

Now, you need to remember all of the hard sciences are not my forte, but it seems to me complement factor I is a molecule that helps to trigger the action of the immune system. Remember all that stuff about whether or not AMD is an autoimmune disorder? It appears complement factor I is able to slow down some aspects of immunity that are running amok and attacking the good guys as well as the bad. Once again the theory appears to be our sight is being wiped out by friendly fire.

Musing here a moment, I have a very strong immune system. Never had mumps or chickenpox. Only had one form of the measles. In the 50s and 60s when I was small, kids got those things all of the time. Once more, I was the odd one. But what if my great immunity is not the result of a strength but actually of a weakness? To wit, I have an immune system with bad brakes. That is a thought. After vanquishing all the bad germs, it turned on itself. Put that with a strong family history of RA, another autoimmune disorder and it makes you wonder. Things that make you say Hmmmm….

Anyway, lampalizumab tightens loose brakes on immune reaction in those who have the complement factor I risk allele. It keeps the immune system from running wild and reduces the rate of damage about 44% in geographic atrophy.

I don’t believe the genetic testing we were given for trial measured the complement factor I risk allele. However, I should suspect changing the genes they highlight may not be that big a job. I also suspect making that adjustment would be a big moneymaker (This is America, after all).

So, next we should probably all find out if we are mutants. I have dibs on being Storm. Who wants to be Wolverine or Charles Xavier? [Can I be Wolverine? Love what he does with his nails!]

written June 28th, 2017

Continue reading “I Want to Be a Mutant”

Geez, It’s Dark in Here!

Back again. I don’t want to scrub the floor or score a test, soooo….a page!?

Still checking out short blurbs from Modern Retina. Rosenfeld reported that low-luminance visual acuity deficits are predictive of the rate of geographic atrophy (GA) progression. Low-luminance visual acuity is basically night vision.

Following up on this I discovered that back in 2008 Janet Sunness found GA patients who reported poor night vision were much more likely to go legally blind than their GA peers who could see better at night. These people made up the quarter of their GA patients (visual acuity of 20/50 or better) who became legally blind within four years.

I believe them but still have a couple of questions. Recovery time from being ‘blinded’ by bright light is forever for me. Leave me there and come back in an hour.

Night vision is not bad. I prefer to walk without a flashlight because I see better to navigate. How can that be considering I am one of those who became legally blind?

The study measured night vision by seeing how much could be read in low light conditions. Reading in low light, I am not so good. Maybe that is the difference.

Anyway, if you cannot afford a lot of fancy testing, seeing how much you can read at dusk may give you some idea of how bad things are going to get. Just what we want to know; right? How bad things can really be.

And in other news, inflammation remains a target for the AMD researchers. Lampalizumab, aka ‘lamp stuff’, blocks complementary factor D to help control the alternative complement pathway (that thing again!) and reduce retinal inflammation. ‘Lamp stuff’ is said to work with carriers of the complement factor I at risk allele. Considering​ Regillo wants to start poking needles in my eyes come 2018, I cannot help but wonder if I actually have that gene. I would hate to be poked in the eye every month to no good end.

Maybe I would rather use POT. ?That’s POT 4. POT4, aka APL 2, blocks all three pathways of complement action at the same time. They are looking to develop an intravitreous shot that would be very long-term. None of this four to six weeks business.

And talking about shots, I just lost the article somewhere in this mess (not domestic goddess material; remember?) but I also read a short article taking about a new, medication delivery system they are working on in the UK. This team has been working on developing a little, bitty molecule that can permeate the layers of the eye and deliver medication to the retina through daily eye drops and not monthly shots. Not only will the people getting the shots approve, but the NHS (National Health Service) will approve because it will cut the number of office visits way down. Save money. Ka ching! [Lin/Linda: never fear, I found the article, click here.]

So there you have a review of some of the articles I pulled off of Modern Retina. They have lots in the works. Some of it is promising and some proves not to be, but they are zeroing in on treatments (plural because with a condition caused by multiple genes I believe there will be multiple avenues of attack). We are getting closer to answers. There is hope. Continue reading “Geez, It’s Dark in Here!”

Lions & Tigers & Bears…Oh My!

Home from ‘the City’ safe and sound. I was really no help with sign reading. None at all! However, I was able to program the phone’s GPS and help in areas I did know. I was also able to read site maps with my reader. [Lin/Linda: ‘the City’ is New York City.]

At The Met Cloisters I could use my telescopic glasses to look at the art ‘close up’. Beautiful tapestries, paintings and carvings.

I talked to one of the guards about whether they would be more handicapped accessible any time soon. The Cloisters is built on multiple levels and my companion for this jaunt has hip and heart problems. As far as vision is concerned, the descriptions were still on printed signs.

Many museums are going to QR signs. QR stands for quick response. They are the little ‘barcode’ squares you can scan with an app on your iPad or iPhone and get amazing amounts of information, even videos! Since you don’t have to actually stick you nose against a sign – your iPad will tell you the information – the system is much more low vision friendly.

Museums using the QR system include the Smithsonian and the National Museum in London. There are also a number of more local museums using the system. You can get the QR reader app from the Apple app store. I was going to try mine yesterday but The Cloisters is not fitted with the system. [Lin/Linda: there is a QR Code Reader for Android from Google Play.]

Since the rain was coming down in buckets – so much for that forecast!- we opted for the Bronx Zoo rather than the gardens. Unfortunately the zoo does not yet have the QR system either. However, for you who also have mobility issues, the zoo is very handicapped accessible and allows scooters and wheelchairs.

I saw the lions and tigers and bears, oh my! We also saw the gorillas who were incredible. With the more humane construction of zoos, I several times could not locate a creature in the foliage. Telescopic lenses helped some with that, but not a lot.

Bottom line on this? We had a successful day in the city. People were incredibly kind and friendly and we struck up conversations with maybe a dozen people. The museum and zoo have ways to go to become more accommodating for us with disabilities but all together it was not too bad. Since my companion had to do all the driving, I paid for gas and lunch.

Would I go back? Yes. Probably not The Cloisters because that was my second trip there and it has sort of ‘been done’ for me. We only got through about half of the zoo. I did not see the snow leopard or get my camel ride! Those things can happen another time. The Botanical Gardens could be that day, too. Some day it is sunny and pleasant.

What have been your experiences with different venues as a low vision person ? Any praise or pans for a place? Any suggestions for a traveler? Let us know!

written June 18th, 2017

Continue reading “Lions & Tigers & Bears…Oh My!”

BIG News!

Woke up with a start at 2 am last night. Probably several things.

First thing that happened was a call from one of my contracts. She had called my third place of employment to schedule an evaluation and was told I did not work there anymore!

News to me! Now, I don’t get there a lot but the plan was for me to go and do a case or two when called. Maybe something like once every six weeks or so. I was never told I was being fired!

Of course it turns out someone got something wrong but it did get me to thinking. Once again, how does one graciously bow out or – hopefully equally graciously – be shown the door? Inquiring minds.

The second thing that has me a little anxious is my big ‘field trip’ tomorrow. I am going to do some sightseeing on Manhattan with an acquaintance from school. First time that far away from home without my husband since my sight loss. I know it can be done, but it is still a little scary.

Third thing: I saw Regillo yesterday. My eyes are getting worse slowly. (I am not so sure about the slowly part!) He confirmed scotomata (aka blind spots) get darker but did not necessarily say they go black. He said that he would not expect a central vision loss to cover 60 degrees of arc. That wide a loss would be ‘extreme’. Those two answers at least get us slightly closer to settling two of my burning questions from this Spring.

The big news, though, is he wants to try me on lampalizumab next winter. It appears the phase 3 clinicals are going to wind down by the end of the year and phase 4 trials will be starting.

People, the numbers of subjects in phase 4 trials is BIG. HUGE! Phase 4 trials take place after the FDA approved the marketing of a new drug. The drug is made available to the public through local physicians. They look for effects and side effects in diverse populations.

What this means for you is simply this: the first actual TREATMENT for geographic atrophy may only be six months away! This is the first breakthrough!

Lampalizumab is an injectible drug. It has been proven to slow the progression of geographic atrophy and to “reduce the area of geographic atrophy” by 20%. Dosing occurs monthly or every six weeks.

Will I do it? Probably. I really believe stem cell replacement of RPEs is the way for me to go, but it is taking forever and I don’t have time for forever. Lampalizumab can be administered locally and would avoid lots of trips to Philly. I don’t like the idea of intravenous injections but I don’t like the idea of a vitrectomy either! A 20% decrease in disease progression might win me enough time (and macula!) to have a more successful intervention later.

If you have dry AMD and geographic atrophy, it might be worth your while to broach the subject of lampalizumab with your retinologist. Let him know you are interested. This could just be the start of something big for all of us.?

Continue reading “BIG News!”

Keep Your Heads

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

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

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

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

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

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

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

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

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

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

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

written June 12th, 2017

Continue reading “Keep Your Heads”

Not Your Parents’ AMD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Continue reading “Not Your Parents’ AMD”

Get Out of That Chair

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

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

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

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

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

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

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

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

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

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

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

Enjoy the Show!

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

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

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

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

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

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

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

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

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

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

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

Counting Toe Hairs

Hey there, hi there! I have no idea where this page is going so we will all be surprised when I get there!

Fun fact, actually fun, weird fact: Caroline Messer of Mt. Sinai Hospital says you can tell about extremity circulation by the hair on people’s toes. If you do not have fuzzy toesies you may be having circulation issues, potentially related to diabetes. Isn’t it amazing what you can learn in the internet?

So, everyone take off your slippers and see if you have hair on your toes. If you do not and do not already have a history of poor circulation in the past, you very well may have one now. Call your doctor, but do NOT say you are worried about non-fuzzy toesies! Some of us have to avoid the psych ward.?

Relevance to sight loss? Well, I could say I mentioned it because of diabetic retinopathy but that is not totally true. Sometimes I like News of the Weird.

And that said, I guess I can continue on the note of general health and also on some things that are not mainstream to Western culture. Specifically? The stuff my yogini gets into.

Right now my yogini is doing more study in energy flow. Chakras, prana, etc. I only heard the word ‘Vayu’ for the first time yesterday but I have the feeling I am going to hear it many more times.

Something she said last week was intriguing though. She said she has read a scientific article on the benefits of chanting “Om”.

Now Nicola Tesla said “if you want to find the secret of the universe, think in terms of energy, frequency and vibration.” Thinking the chanting vibration does SOMETHING would be logical.

Looking around the web I have yet to find something that has scientifically proven the benefits of vibrations. However, there are many, many people who believe in vibrational medicine. I found out chanting, Reiki, and aromatherapy are all considered to be vibrational medicine. Also light stimulation and music therapy. I know dozens of people who engage in those things (but then birds of a feather…maybe it is just me).

According to James Oschman in What is Healing Energy? Part 4: Vibrational Medicines, molecular oscillations are absorbed by the living matrix and conducted through the body. Sort of sounds like a full body ‘tune up’ (pun intended ?) on a molecular level.

Sound sensible? Yeah, to me, but with no proof I am not recommending vibrational medication as a cure for anything just yet.

Just the same…..deep breathing and chanting can be very relaxing and mindful, helping to reduce stress. “Om”, actually stretched out to “a…u…m” is sort of a cool thing because it ‘tickles’ in chest, neck and head in succession. Concentration on that progression can be a good mindfulness exercise.

And the best things about chanting? It is free and you can do it in the privacy of your own home.

One thing, though. Don’t let them catch you counting toe hairs OR chanting! You would have a lot of explaining to do and I will not be held responsible.

Continue reading “Counting Toe Hairs”

Best Places for Us to Live

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

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

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

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

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

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

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

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

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

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

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

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

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

Written June 10th, 2017

Continue reading “Best Places for Us to Live”

Some Learning to Do

Good morning. Mildly frustrated….again. Suspecting this is the usual state for people with vision loss in the ‘mature’ years (and whom, exactly do we think we are kidding with that ‘mature’ business??)

The online dictionary gives the definition of frustration as “the state of being upset or annoyed especially because of the inability to change or achievement something”. Yep, that’s me. Upset and annoyed.

I miss my freedom and flexibility of movement. I want to be able to go where I want to go and do what I want to do when I want to do it. And I don’t want everything I do to be such a damn project!

I got back to hip hop this week after three weeks of missed classes. Variety of reasons. But then Tuesday I ended up staying home because I had gotten the feeling I had overstayed my welcome with that ride. (Take the hint, girl!) Wednesday I was going to ride my bike to yoga in the park but I got out of work too late. Tonight I tried a different class, one the Y is offering in place of yoga, and really did not like it. Honestly! Niggling little frustration after niggling little frustration!

Then, of course, I feel guilty. I had arranged for transportation, but two people inquired how I was getting home. Either of them would have volunteered to bring me home. That is not a requirement. They are kind. How can I be so frustrated when I am surrounded by kind people? What is wrong that I cannot appreciate what I have?

Summer plans are starting to formulate. I am one of the most fortunate people I know because I have people willing to take me to yoga events, blues festivals and even into ‘The City’. [New York City, that is.] Am I thinking of that? Of course not! I am thinking about how I am going to finagle transportation! How can I get to the kind souls so they are not driving so much? How can I be less of a burden?

When I start thinking this way I start to get very willful. I dig my heels in and say things to my husband like “Fine! I don’t care! I will walk!” Yeah. 20 miles in the snow uphill…both ways. Problem is: I would actually try!

In DBT the question to ask someone who is being willful is “What is the threat?” What is it you are defending against when you dig your heels in and insist things be your way? Pretty good question because dollars to donuts I am defending against something!

In my case, I think I am defending against the loss of my lifestyle. The loss of my identity. Realistic fear? Certainly not for a couple of confused weeks. Best to let the dust settle. See how things shake out to use one more of my colloquialisms.

Of course, my style tends more towards blunt force than patience. I don’t totally embrace everything I teach. Apparently I also have some learning to do.

Written June 10th, 2017

Continue reading “Some Learning to Do”

“I Don’t Want to Go There!”

Lin showed me one of the conversation threads from the Facebook group. She thought we might do a page or two on the topic. The topic was the reactions of partners to our vision loss.

After looking for some time last evening and today, I have accumulated a few bits and pieces on the subject. Some of the information is 20 years old. A lot of it is anecdotal (ie, based on personal accounts). In general, however, there is not much.

If we as the visually impaired population are being treated like mushrooms – you remember, being kept in the dark and fed bullshit – it appears the treatment of partners of the visually impaired is even worse. They are pretty much ignored!

I did find one anecdotal piece that may be food for thought. Sam Dylan Finch wrote about his partner who has an ‘invisible disability’. I am going to take some of his comments and expound – liberally – upon them.

Finch talks about time going on and the feeling nothing has really changed. Sort of “this is what it must be like in Limbo”. There are more old chestnuts to describe this state of affairs. Waiting for the other shoe to drop. Poop or get off the pot. Most of them just have the feeling of uneasy anticipation. “Get on with it already!”

I imagine sometimes our partners want to scream “Just go blind already! Stop talking and get it over with!” The anticipation of impending doom can be overwhelming.

Not having an answer to this disease is – bluntly put – a pain in the ass. I suspect we are all intelligent people with many successes under our belts. Ditto for our partners. There are few things we have not finagled our ways out of. Why is there no way out of this? And aren’t our partners supposed to help us? Yet every time they come up with a ‘new’ idea, we have already seen it. And to top that off, it is still in stage 2 clinical trials and Lin and Sue said the results were questionable! At best they might feel redundant. At worse? Helpless.

A thought I just had is this: how excluded might our partners feel? Suddenly we have become the ‘other’. We have entered a secret society that the only way they can enter is to lose their own sight. Not going there!

But just the same, we seem to suddenly have all these online acquaintances who understand us in a way our partners do not. We share a reality our partners cannot enter.

Finch talked about the guilt associated with resentment. Partners take on more responsibility. That is more on top of what they already have. Some people look down the road and imagine servitude, constantly at the beck and call of a ‘blind’ partner. Those folks don’t want to talk about the disease. Ignore it and it might go away. Keep me from becoming chauffeur, housekeeper and nurse. I don’t want to go there! And if we cannot stay away from that fate, don’t make me feel guilty about fearing it.

So that is my elaboration of Sam Dylan Finch’s points about having a disabled partner. How does it sound? Any thoughts? Continue reading ““I Don’t Want to Go There!””

The Art of Asking

Today was a sad day at school. The teacher who had been battling cancer for the last two plus years passed away.

I have been teaching DBT long enough now, the DBT-ish thoughts come unbidden. First though is about meaning in pain. Some people wonder how you can have meaning in a life full of pain.

The answer according to Viktor Frankl and others is this: the meaning in a life full of pain can be in the way you endure. Fortitude? Grace? Style? Call it what you will. This woman did it with class.

The other thing I thought about was the comparison skill. The mother of young children diagnosed with terminal cancer? She could have handled this low vision thing with one hand tied behind her back! What am I complaining about? I’m lucky!

And another reason I am lucky? Back to I have people and my people are great. Since my ride home and this woman were friends, she went home early. Before I even knew I was down one ride home, the secretary had called my backup ride for me and I was back in business. Love you guys!

Taking me to what Lin wants me to address: asking for help. She informs me a lot of you folks are not loud, forward pains like I am. I am supposed to talk about how it is done…and not like a loud, forward pain, either.

Remember do as I say, not as I do? We are going to go over asking nicely.?

Lin sent an article by a woman who asks for things for a living. She collects money for charity. I am going to use her Art of Asking as a loose guide.

Know what you want and why you are asking

The author suggests you know what you want and why you are asking. Essentially it should be important to you and other people should be able to see that. Frivolous doesn’t cut it. If it doesn’t matter to you, why bother people?

Ask for things from people who share your interests

I ask for things from people who share my interests. Not only do they ‘get’ I will go nutz if I don’t get to yoga, they are often “going my way”. (Bing Crosby, 1944, and available for free on YouTube!)

Ask directly for what you want and be specific about the expected cost & effort to the person

The author also suggested asking directly for what you want and being specific about the expected cost and effort to the other person. Don’t drag people out of their way and be understanding and flexible about their needs if they take you out of your way. With my ride home from school I have gone to pick out a train set, to the garage and to the chiropractor. Since she needed to go, I went along. She was doing me a favor, not the other way around.

As I said before, my school ride home lives ¾ of a mile away. My backup ride is about 1-¼ miles away. If I know someone lives on the other side of town, I refrain from asking except in an emergency.

Social media can help by asking a small group of people

I am not on social media, but social media has helped in getting my needs met. It has already happened that a usual ride had to back out but ‘advertised’ successfully for a sub. Asking in a small group can get people talking and generating solutions. Sometimes a total stranger will step in to help (just make sure SOMEBODY can vouch for him or her).

Give alternatives

The author suggests giving alternatives. There is more than one way to solve any problem and personally I have found people are more receptive to helping if they see you making the effort too. When I go to my third job, transportation will take me half way. Rather than run someone all the way to pick me up, I make arrangements to get to the halfway point on my own.

Don’t be afraid to get told no

And the most important thing of all? Don’t be afraid to get told no. The author points out not asking guarantees a no. I want to point out graciously accepting a no does not burn bridges or make people feel uncomfortable about being a ‘bad’ person. Most excuses are not excuses at all; they are reasons. Recognizing other people have obligations and needs can only be a positive in the long term.

End of tutorial.

Continue reading “The Art of Asking”

How Many Favors?

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

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

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

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

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

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

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

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

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

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

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

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

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

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