A Brisket Ankle

Lin reminded me I needed to finish talking about my writing process. Apparently a couple of people have asked.

I already addressed the topic of how I get ideas. They just pop up from life or some comment someone has made. Sometimes I go looking for them online.

I subscribe to healio.com and a few other eye sites. I can ‘zoom’ them on my iPad to read and see if it is an article I could use. If it is something I want, I print it out.

Once it is printed out, I put it on my CCTV to re-read and underline what I consider are the important points. From there I start to write.

I bought a Verizon tablet soon after I ‘lost’ my second eye. It is about twice the size of my iPad mini (which I love and goes just about everywhere with me). I can zoom the font up to around 28 points or maybe more on the tablet. Very easy to see. I type with one finger. I can touch type and did put a keyboard on the Verizon tablet but I somehow never got it connected right so it doesn’t work. Doesn’t matter. So far my process works.

Why do I not use speech recognition? Speech rec, which autocorrect turns into recognition just about every time, is possibly more annoying than autocorrect, with which I have a true love/ hate relationship. Speech rec works best when you follow proper conventions, use one syllables words and pretty much don’t stray from the beaten path. In case you haven’t noticed, I “don’t talk too good” when I write. Training a speech recognition – there it goes again! – program to ‘follow along’ would be incredibly frustrating. And not only would it be hard to train it to my goofy style, I would also have to train it on the specialized vocabulary of psychology, ophthalmology, genetics, what have you. Oy. Oh, and Yiddish, Spanish and several other languages from which I know a half a dozen words max and occasionally like to use.

Lin can tell you about my failed forays into the world of speech recognition. Also my yogini. I often use speech recognition when texting her. What my yogini usually gets ends with “…no, I didn’t say that! …no, I did not say that either! Oh hell! You knew what I meant!” She finds my attempts to be very entertaining. [Lin/Linda: wish I’d saved some of her best goofs! There were 2 memorable ones…I had to figure out that ‘a brisket ankle’ meant a ‘broken ankle’ and that ‘toxo plus Moses’ was ‘toxoplasmosis’.  Great entertainment sometimes!]

There is another problem with using speech recognition. If I have been doing a lot of it, when I go to leave a ‘regular’ voice message I will say something like “Got your message period. Looking forward to seeing you explanation point.” Makes me sound a little strange.

Reading back what have written, I use a technique I read about. It works pretty well when you are using eccentric viewing. Hold your head still and move the text. It is easy to do on a tablet.

Once it is written, I send it along to Lin who authenticates what I said, puts in the links, corrects any grammar or spelling errors she sees, formats it and sends it back for final proof. The rest, as they say, is history.  [If you’d like to read more about this part, go to About Our Project.]

Hope that answers some of your questions! Caio!

written October 8th, 2017 Continue reading “A Brisket Ankle”

Let It Be

Onward into massive confusion! I may not have the brains to understand this stuff but I make up for it in pure, dogged tenacity.

I looked up peripheral retina atrophy and discovered Eyewiki considers atrophic retinal holes to be full-thickness, retinal breaks generally occurring in the peripheral retina. They are not caused by vitreous adhesions like macular holes. Remember macular holes are caused when the ‘strings’ in the vitreous latch on and tug. The cause for the death of these parts of the peripheral retina is thought to be a failure of blood supply and not drusen or any of the complement factor SNAFUS we may experience in AMD.

So that is one thing I found suggesting peripheral retina atrophy and AMD are not related. HOWEVER, I also found an article suggesting they are and AMD might not be just for maculas any more. Just to make everything more delightful, Ophthalmology in April, 2017 published a study about peripheral retinal changes associated with AMD. (One of the authors for this study was Chew, EY! Beastie Baby would have approved!) Their conclusions were these: peripheral eye changes are more prevalent in eyes with AMD. These changes can be mid-range and/or far periphery of the retina. They decided AMD may be a full eye condition and suggested further study.

Another study done in Croatia and published online in Ophthalmology Retina September 22, 2017 found peripheral drusen, reticular pigment changes and paving stone degeneration occurred more often in those with AMD than in controls. Paving stone degeneration is constituted by small, discrete, rounded areas of loss of pigment and thinning of the retina.

In my limited research nothing said that AMD leads to full retina deterioration. My local retinologist did not say that was the case either.

I am not a doctor and I am groping for answers just like you. Don’t believe a word I say. That said, to clean up the saying a bit, opinions are like tushies. Everyone has one.

This is mine on this topic: Peripheral atrophy and geographic atrophy are probably not the same ‘animal’. There may be some, common underlying mechanism but we don’t know what it is yet. When I was talking to my local doctor he mentioned what might have been the presence of peripheral retinal atrophy in some of the same people who had AMD. Just because they are both present does not mean causality one for the other. He also said he had seen it only rarely and in the very old. Having seen even one case, he was not going to make me any promises things would not go from bad to worse.

Now to my soapbox. I have more than enough to worry about with my macular degeneration and I expect you do too. I am not going to buy trouble. I could waste every minute of every day worrying about a bunch of what-ifs. I have better things to do with my time. I suspect you do, too.

Let it be….
Paul McCartney, 1970

written October 7th, 2017

Continue reading “Let It Be”

Slogging Through Again

I am waiting for my ride to go hot air ballooning and working on deciphering an article Lin sent me. Once again the question is how much loss can we expect from dry AMD, especially geographic atrophy? Regillo told me 60 degrees of arc loss would be extreme but my local retinologist said some people in their 90s can have GA encompassing the entire retina. Ouch.  [Lin/Linda: Sue wrote about ‘degrees of arc’ in her page Love Wikipedia.]

So, here be me again, slogging through another article I about half understand. Want to slog along? I would appreciate the company!

The article is entitled Clinical Endpoints for the Study of Geographic Atrophy Secondary to Age-Related Macular Degeneration published October, 2016. You there in the home audience feel free to download it and play along!

First of all, I latched on the statement (paraphrasing) “drusen may not result in actual visual acuity loss but the effects of having drusen can be seen in functional deficits very early in the disease process”. What functional deficits?

A 2008 paper by Feng Qiu and Susan Leat found people with very early AMD have loss of “low spatial frequency static contrast sensitivity”. Yippee. Once more down the rabbit hole. It appears – according to the appendix of Emergent Techniques for Assessment of Visual Performance – spatial contrast sensitivity has to do with lighting, the place on the retina where the image is falling and something called field size as well as time factors and the orientation of the image.

Boiled down it has something to do with how sensitive we are to variations in the data our eyes are gathering. I think. Don’t hold me to it. Just know that 20/20 vision with drusen might not be as perfect as we might think.

We talked about reduced dark adaptation before and this is also a problem in early AMD. Apparently there are several effects early drusen have that have nothing to do with acuity.

The next thing I had to look up – in the same paragraph, mind you! – was information that might help me understand a statement suggesting advancement to GA from early AMD may in part depend upon the presence of “reticular pseudodrusen”. So now we have drusen impersonators????

According to Association of Pseudodrusen and Early Onset Drusen by De Bats, Wolff et al (doesn’t that team sound perfect for the Halloween season?) pseudodrusen form on top of the RPEs and not below them as do ‘real’ drusen. There seems to be a connection between having ‘eye poop’ aka drusen on top of the RPEs and early and rapid develop of advanced AMD.

And the above was all in one paragraph! I may be a very long time in deciphering this baby.

So what I have discovered so far is this: visual acuity does not tell the whole story about functional vision loss when it comes to early AMD. If you have drusen be aware your contrast sensitivity and dark adaptation are probably already compromised. Secondly, pseudodrusen, which is eye poop on top of the RPEs, can predict a more rapid and earlier progression to GA.

Have I found a thing about GA outside of the macula? Not yet, but I am still reading! Talk at ya later!

written October 7th, 2o17 Continue reading “Slogging Through Again”

Not a Total Loss

Hello. Sitting waiting to see the retinologist. I have a day of medical appointments. One is at a satellite office and the other is at the main hospital. Supposedly the hospital will provide connecting transportation. We shall see.

I had to ask to find out if this is a service they offer. If you have to go from building to building such as I am today, ask. They don’t advertise this sort of thing so we need to be proactive.

I realize most of you don’t play Panda Pop but if you do you know you can ‘win’ costumes for Mama Panda. I just won a costume and my Mama Panda now looks like a cross among the bride of Frankenstein, Tim Curry in Rocky Horror Picture Show and Sparkle Brite. Maybe a little Little Richard on the side. Bizarre.

Did any of you see Rocky Horror Picture Show in the theatre? Late 70s. They said “a toast” on the screen and you got pelted with flying slices of bread! Hard to believe that is now nostalgia.

What does this have to do with AMD? Nothing. Just some crazy observations to provide distractions.

If you don’t want to read this sort of nonsense, volunteer to write a page!

Sometime later: the van connection worked. I am now at the main hospital. Remember to ask about such services. No one volunteers the info.

Update on me: my left eye has surpassed my right eye in the race to ‘blindness’. The atrophy in my left eye is ‘advanced’.

Still won’t tell me what to expect, when it will stop. My retinologist said some people in their 90s have deterioration of the entire retina! Gulp! Not what I wanted to hear.

Some lady sat on the bench with me and apropos to very little asked me if “the shots” give me light sensitivity. Since I don’t get “shots” I had no clue. Although I just looked it up and it appears shots do cause some sensitivities. I assume photosensitivity is among them. Comments? [Lin/Linda: actually, photosensitivity is one symptom of macular degeneration. I can’t find anything that says injections can =cause= photosensitivity, but I have heard people say that an injection can make it worse.]

Again, please share. Otherwise I will just prattle on and you don’t want that!

Some more time later: I am now standing in the outpatient surgery waiting room, at the charging station. I have no business in outpatient surgery but the charging station is here! There is none in general internal medicine. Pooh.

These stations have connections for four or five different makes of devices including Apple products. Don’t be afraid to use them if you ‘run dry’ in your device. We have very legitimate uses for our devices and we need to keep them charged…even when the van comes early and you forget your own charger.

And I am adding one piece of legitimate AMD information before I close: According to Pubmed in a brand new October, 2017 release, hot off the presses as it were, dry AMD and prostate cancer are correlated. Prostate cancer can increase oxidative stress in the entire system. Androgen deprivation therapy helps to reduce the chances of AMD.

So, not a total loss of a page. Talk to you later!

written October 3rd, 2017 Continue reading “Not a Total Loss”

A Full Life

Just told Lin I am up to my arse in alligators. Totally true. I was ‘flying low’ all day at school today. Zoooooom!!!!!!! Four new referral observations, two file searches, two computer scorings for tests, one report proofed and a partridge in a pear tree. I have a report to do for the courts through the private practice office but that can wait until I get home from hip hop. Once I get it started and break the inertia, I will be more willing to work on it tomorrow.

So, crazy busy. I do it to myself. I am totally to blame. I have scheduled something to do every evening this week. Life is full…and most of the time I like it! I like it! ?

Got a note from a reader in Massachusetts. Mary has been with us for awhile and she is doing great things up there. This is the reader who is helping to launch a senior center and a sight loss support group. Impressive!

Anyway, while Mary might not be as crazy as I am, she likes life to be full, too.

I was going to answer most if not all of her questions about my writing process in this page, but now I think I will answer only one. Where do I get my ideas? From my life. From what people say to me. From you, Mary.

How do you like that? You are an inspiration! ?

Mary saying she tries to keep her life full made me think about what constitutes a full life. Back to the web. Onward!

If you are a Christian, John 10:10 says Jesus came so we could each have a life that is “full and good”. So the concept of a full life is at least a couple of thousand years old. Not a new concept. Again, what constitutes a full life? I sort of doubt John meant being overbooked. He didn’t keep Jesus’s personal appearance calendar; did he? “You’re booked at the Mount. Standing room crowd only! You’re gonna knock them alive!”

Ouch! Sorry. Fertile and irreverent imagination here.

There was a 75 year, longitudinal study completed at Harvard on what makes a full life. They found being fully booked had little to do with it. What gave life that full flavor was relationships. Also contributing was being content in your work. Joy was defined as connectedness. Being connected to your people, your work, your environment. Be involved and life will be fulfilling.

Creative expression helps to create a full life. Create.

The last thing the Harvard study identified as needed for a fulfilling life was something I talked about a few weeks ago: challenge. The way we grow is learning how to cope with challenge. The study author, Vaillant, calls it “the capacity to make gold out of shit”. The study also seemed to suggest that those who got get. Having good coping skills help us to have better relationships.

Which brought the study full circle and ends this page. Full lives matter. Keep building yours.

written October 2nd, 2017 Continue reading “A Full Life”

Looking for Answers

Lin gave me a preview of the page Nancy submitted as a guest writer. I am so glad Nancy took our invitation! Hoping that more of you do the same. [click here for Nancy’s page.]

Now, we all know I am a little ‘different’. Might as well embrace it. My immediate supervisor at school loves to tell me “You are such a psychologist!” She’s telling me I’m weird; right?

Anyway, even though I am not normal, I see parallels between Nancy’s experiences, my experiences and maybe even your experiences, too.

We are all “of a certain age”. At 64, I think of myself as a youngster with AMD but Lin tells me new Facebook members keep getting younger. What the hey is happening there?!?!? Anyway, this is not a disease of the young.

Most of us had parents or relatives with AMD. Nancy worried about developing it herself. I never did but Daddy was into his 80s when he lost his sight and his condition was never named for me. Since relatives were pretty few and far between on my father’s side, he was a sample of one for me. I never gave a thought to it being hereditary. Oops. Maybe you were not so obtuse and worried like Nancy.

Both Nancy and I have had the anxiety of waiting for things to go to hell in a proverbial handbag. One of the problems with a slowly developing condition is it lulls you into complacency and the next thing you know WHAM! No longer so complacent.

Many of us are facing limitations. These are limitations we don’t like and don’t want. Limitations that hit right at our independence and threaten who we are and how we interact with our worlds.

Then there are the attempts to combat this stuff. I went research and science. Fits me. Nancy went nutrition. Me? Not so much. Even though my ‘little’ nephew – 6’5” and possibly still growing – assures me food is the most important drug you can put in your body, I am not going there.

And in keeping with the season I just had a really excellent piece of pumpkin spice cake. What? Don’t give me grief; it was orange! Antioxidant color; right?

Back on track – but it was yummy cake! – we are all looking for answers. We are all hoping for the miracle cure. Is it coming? I truly believe so. Just don’t expect it by next Tuesday. In the age of great medical breakthroughs, you would think our little problem would be easy but it’s not. It is a frustration we all feel.

Then…the elephant in the room: depression. We have talked about it before and will talk about it again. We have all felt it. Some of us have the resources to help us bounce back. Some of us need help finding those resources. Lin said something about citing pages, etc. about depression so I am sure several of these words will be blue soon. [click here for an article about depression in people with AMD.]

What I learned from Nancy’s page? We are all having similar experiences. Nancy, probably you, me, too. So maybe I’m not so weird after all? Maybe?

written October 2nd, 2017 Continue reading “Looking for Answers”

Be Prepared

I have decided a poor memory and poor vision leading to no driving is a bad combination. Once again what I planned to work on got left at the office. Really thought it was in my bag.

I have been roaming the house, picking things up, doing laundry and filling the dishwasher but we all know keeping house is not my shtick. (Just take a look at this place!) I did bring one file home to work on. Should do it but I have these articles on disaster and the visually impaired that I ran off, so…

Sue redux! Explain to me why I thought I had actually shut up!

Disasters – and this time I am not talking about my housekeeping – and visual impairment are another nasty combination. According to a 2007 American Public Health Association article, eye injuries are very common during and after all kinds of disasters but yet, at least ten years ago, most emergency response teams know very little about managing eye injury and other problems.

I looked for more recent articles saying they had beefed up the eye injury training for first responders in the last ten years. I found nada. That means these people could very well be scrambling to deal with stuff like penetrating eye wounds, chemical exposure and retinal detachment, not to mention infections and other such things with very little training and materials to do the job. And that means, my dears, we with our progressive vision loss condition are on our own. Not that I would not want the guy with the pierced eye ball to go ahead of me in line, mind you. Just saying, we need to expect to be very low priority.

Wisefamilyeye.com – love your logo! – did a page on preparing an eye emergency kit and putting it in your go bag. They suggest spare, impact resistant glasses. I suggest also having a copy of your eyeglass prescription. You might want to store it in drafts in your email so you can access it from anyone’s device. Wisefamilyeye.com also suggested safety goggles and sunglasses, artificial tears and saline solution (you might want to add an eye cup if you have one) and at least two weeks of prescription eye drops.

I already touched on clean-up with my mention of my bout with flood mud crud. Flood water contains EVERYTHING you can think of. Sewer plants and chemical plants cannot get out of the way so everything they contained will come to you. Safety goggles are a must. Protective clothing, such as heavy rubber gloves and thick soled boot if you can find any. And face masks. Face masks are good.

Essentially, disaster preparedness is just that: being prepared. The American Federation of the Blind put together their own checklist. Their list included having emergency numbers nearby and knowing who to call to get yourself evacuated asap. This could be either a buddy, the local authorities or, even better, both. Let people outside of your area know your predicament and that you might be coming to visit!

If you have a service animal – or any animal! – make plans for him or her as well. Reasonably sure evacuation services and shelters must take service animals. They do not have to take pets and rumor has it, many people recently refused to go to shelters rather than leave pets behind. Do not allow yourself or your animals to be in that position.

If recent events are any indication, we can expect to have more (and more?) disasters as time goes on. Be prepared.

September 30th, 2017 Continue reading “Be Prepared”

Downtime

Another Friday night. A little ‘fried’ on a Friday. Not interested in doing anything of substance. I tried watching NCIS (CBS) on my tablet and there is a glitch. It switches me over to another episode with 12 minutes left in the one I am watching. Lin says it does not happened for her and it does not happen when I watch PBS on my iPad. Weird. Anyway, I’m going to watch Nature instead.

I have just started to watch a little TV on my iPad. It is nice because you can practically put your nose on the screen and no one cares. Relative distance magnification at it’s finest.

Apps for CBS All Access and PBS Video are available for free in the app store. A fair number of episodes from prime time series are free. Might help to trim the old cable bill. [Lin/Linda: The apps are free but for access to all of their shows & live CBS in certain areas, CBS All Access offers several subscription options.  PBS does not charge a fee.  You can view both on quite a few more devices than on the iPhone and iPad.  There are TONS of ways to ‘cut the cord’ and reduce or get rid of cable TV.]

I am taking some downtime now because there is plenty going on soon. It seems my nature abhors a vacuum.

In addition to going back to work in earnest, I am participating in the local ‘event’ scene. I got invited to go to a local theater production and my yogini is having a moon salutation practice at moon rise for the full moon.

“When the moon is in the seventh house and Jupiter aligns with Mars…” Born 30 years too late for her inclinations, my yogini is our resident hippie. And FYI, the Age of Aquarius does not officially start until 2579 so we have some time to hang out.

One of these days I have a Party in Pink. That is the Zumba fundraiser for breast cancer research. Then towards the end of the month I am supposed to go to a yoga fundraiser for Puerto Rico. That is in addition to the hot air balloon festival, which is a fundraiser for the Children’s Miracle Network. Apparently disasters can lead to lots of fun events around here! Ouch. Forget I said that.

But on the topic of disasters, Bascom-Palmer Eye Institute, once again the top shop for eyes in the country, did their good deeds during the recent hurricanes in Florida. Not only did they call all staff in and encourage them to bring family members along, Bascom-Palmer sent out emergency teams to the Keys.

In a press release quoted by healio.com Bascom-Palmer reported serving more than 40 patients for eye problems. Chronic problems with no available medication, broken glasses, injury, infection? They treated it all. Dr. Richard Lee opined how treating eye problems during and after a disaster is essential, a real priority. People who cannot see well are ripe for incurring other injuries.

Speaking personally, I know we who were volunteering in the local flood zone in 2011 were all required to wear eye protection. I came down with a raging case of flood mud crud (hacked so hard I actually put my back in spasms!). How much worse if I had topped that off with a raging eye infection!

I was going to roll right into a discussion of a couple articles I found on eye care during a disaster but I am at 500 words here. That will have to be a new page.

Dang! And you thought you got rid of me! ?

Written September 30th, 2017 Continue reading “Downtime”

Not As Cut and Dried

Back for a page sooner than I thought. I wanted to get some of this out there before it got too stale.

I told you I was going to the first vision seminar offered by our local hospital. Yes? Yes. The presenter, Paul Freeman, is the chief of low vision rehabilitation at Allegheny Hospital. That’s Pittsburgh; don’t ya know. Dr. Freeman’s first talk was about driving. Like many things, driving appears not to be quite as cut and dried a topic as I generally thought.

Freeman quotes statistics indicating drivers with intermediate AMD – not advanced like yours ever lovin’ truly – are less likely to have accidents than others including ‘normals’.

The reason was many of people with intermediate AMD are aware of their problems and do four things: compensate, avoid, use caution and self-regulate.

All great strategies for trying to stay safe. However, Freeman also pointed out AMD with its acuity loss as well as decreased contrast sensitivity can cause a decrease in response time. Response time is crucial! For every 1.5 second it takes you to decide there really is something there and hit the brake, at 30 miles an hour you have gone 66 feet. Moving at 65 mph a second and a half’s hesitation will find you 142 feet farther down the road. That is nearly half a football field. Distance traveled increases if the vehicle goes into a skid.

Of course, response time is dependent upon much more than visual acuity. Physical and cognitive states come into the mix. And speaking of cognitive ability, Freeman also quoted a 2006 AREDS study suggesting a possible correlation – not causality – between advanced AMD and cognitive impairment….but what do they know; right??

Freeman reported ways of getting around some of our cognitive deficits are to reduce the burdens on attention and memory. We might have to turn off the radio or decline to take chatty or argumentative family members along for the ride. Cell phones are a definite no but talking GPS can help to take some of the burden of navigating.

Of course it would be easier if the only people we have to worry about while driving were us. Quite bluntly, people do the damndest things. Remember the YouTube video of the woman texting and falling into the fountain? She has sisters…and brothers. People are walking into things and each other and off curbs more than ever.

The takeaway message I got from the driving presentation was this: just as each of us is multifaceted, the decision whether or not to drive should also be multifaceted. How is your contrast sensitivity? How much glare can you handle? How fast is your eye-foot reaction time? How confusing and busy are the places you want to drive? All these and more have to be considered.

Written September 26th, 2017 Continue reading “Not As Cut and Dried”

I Told You So!

I admit many faults in these pages. One of my many faults is enjoying saying “I told you so!”

OK, that’s out of the way, Lin suggested I write a page admitting I have run out of things to write about. My muse has taken a vacation. I have had very few clues what to write about and I have been grasping at any and all ideas.

I have also gotten busy again. The girl has all sorts of crazy things on the calendar. Lots of work and more than my fair share of play. Many years ago I decided I would go to my death-bed with very few regrets. I don’t like to say “I wish I had”.

As opposed to liking to say “I told you so!’ bringing me back to my topic. Lin said I did not need to worry. She said I would never run out of idea. Ha! Sometimes she knows me very well and sometimes she doesn’t.

The point is this: I am in a place that is almost the normal (and I use that word very tongue in cheek) me. I am living MY life. I am not living a pale substitute nor am I always settling for second or third best. My life is full.

And I am doing it visually impaired.

Is this state of affairs going to last? I sincerely doubt it. I am 64 and ridiculously, blessedly healthy. May not last. I know the 64 part is not going to last. Where do the years go? Weren’t we just 24 yesterday?

I have dry AMD with geographic atrophy. My blur is not too bad. With my toys I make do. The only thing I really (really, really) miss is driving and my support system is beyond awesome. Will my vision worsen? Probably. Will I not be able to participate as I would like? Dunno. Perhaps. Probably?

But if and when my vision does get worse, I will have a lot of thoughts about that new part of the journey. Probably be back to writing every day for a while. In many ways these pages have been my therapy. I will need to vent.

In the meantime we are again looking for people with something to say. People who are in the throes of the battle instead of on R&R for a while. Some people who can help others through the journey by sharing their unique experiences.

Until we find these people, Lin will republish earlier pages. I will occasionally chime in with something new, mostly informational at this point. Be assured I will not hope to have a decline in vision just so I have something to write about! I am hoping this lull lasts for a very long time.

There we are. I am out of ideas. I told you so!

Written September 26th, 2017 Continue reading “I Told You So!”

Doing Beers with Grandma

Hey. Sort of blah today. Still getting used to the idea of no dog.

I am a spoiled brat and was sort of disappointed with my showing at the photo contest. A third and an honorable mention are not at all bad. I just have high expectations.

For some reason we are back to high Summer. It was over 90 Fahrenheit today, September 25. About the same yesterday. Along with mad dogs and Englishmen I have been out in the midday sun and I am hot! My body was gearing up for fall. Not feeling like fall now!

Then of course, since we are going to be away, my workload just more than doubled. Let’s give Sue another six kids to test. She’s going on vacation!

Oh well, better than never having a dog, six feet of snow and no interesting job. Although sometimes I feel a little too ‘blessed’.

One of the topics in the teachers’ lounge today was bizarre things your voice recognition software tells people you said. One of the milder ones was how “doing beets with Grandma” became “doing beers with Grandma.” Well, some grandmas might throw back a few. Just not my colleague’s.

I know fully sighted people produce text and other written things that make no sense. I send out plenty that is alternating perplexing and/or amusing and/or frustrating. Some of my mistakes I manage to catch. That said, though, the question in my mind became how do truly blind people proofread? After all, I may need the skill one day. [Lin/Linda: I wish I’d kept a list of all the crazy things I’ve gotten from Sue since we started this!]

Back in 2011 Ryan Cordell suggested using text-to-speech to read things back to yourself. He explains how on an Apple OS X device you can have what you wrote read back to you by just making a few changes in the settings. This can be helpful if you are composing reports or letters on your computer.

Stephanie Diamond wrote about using Dragon NaturallySpeaking to proof read. Diamond also suggested text-to-speech for proof reading. Dragon works on PCs and Macs. Since NaturallySpeaking records your voice as well as recognizing it, another option is to listen to what you really did say. Diamond added you can send documents received from elsewhere to your PC and have NaturallySpeaking read those too. [You’ll see this software as Dragon Naturally Speaking, too, with a space between Naturally & Speaking.]

And if you want a human opinion on not only the spelling and verbiage but other aspects of your writing, remember Be My Eyes (BME) is an app that connects blind people with sighted volunteers via live video chat.

According to an April, 2017 Lighthouse Media publication, Be My Eyes now has half a million volunteers! Whom you get when you call is random. You can call unlimited times.

No one is pushy or opinionated unless you ask them to be. Want to know if that shirt goes with those pants? You can ask that and get an opinion. And no one will ask you why you ignored the advice.

According to the article, BME is looking for more users. This could be a match made in Heaven.

So, there are a few ideas for proofreading. But please don’t get too perfect. I find some of the errors amusing!

written September 26th, 2017 Continue reading “Doing Beers with Grandma”

Free Stuff

Back from the first local vision seminar this morning and the travel agency this afternoon. My husband wants to take a vacation before we get a puppy.

After the puppy, we will have to tighten the belt again. My eyes have always been bigger than my belly!

Of course, there are sources of free stuff that can hold me over. I have talked a lot about free, audiobooks from BARD. YouTube has free movies and music if you want to search. I know many of you ‘got’ that but some of our older, less tech savvy friends might not be aware. Right now I am listening to Rag ‘n’ Bone Man’s “Human”. It has been my favorite song for about two months. “It’s got a good beat and it is easy to dance to.”

Or, you could dig in the attic and get into the ‘archives’. Next up is Michael Jackson with “Billie Jean”. I would suspect lots of you have a pile of 45s or 78s somewhere.  A couple of years back I got an inexpensive turntable to play mine. Cheap, nostalgic entertainment.

Many years back I got into rebating and free stuff. I have not done it in a while but now in the age of online opportunities, it looks as if you can score all sorts of fun stuff…and no envelopes or stamps required.

Again, I have not used any of these and I cannot actually recommend them, but  it looks like freeflys.com has all sorts of money off coupons you can print out. And if you like to get things in the mail, they also offer free samples.

Refundsweepers.com offers all sorts of money-off coupons as well.  I gave them my email address and they did send me an email saying I had a soup coupon. I had trouble printing it out but maybe you will have better luck. I will let you know if I get inundated with spam.

And as I am looking for free stuff I just found a possible option for our friends in Massachusetts. Anyone ever hear of Maximize Assistive Technology in Consumer’s Hands? Massachusetts MATCH has a website and a phone number (877-508-3974) and a Facebook group. Not sure what the requirements are exactly. I looked at their offerings of ‘pre-owned’ mobility and ‘sick room’ equipment. Nothing for vision that I saw but I think some of us may need a bath chair. Not to mention, if you have assistive equipment you don’t need, they say they will get it into needy hands for you. If you check it out and they are legit, let us know. I did look at a few pieces of equipment and there were no prices.

For the opposite coast, Berkeley,CA, the Center for Accessible Technology has free classes for seniors in accessing everything from email to online dating sites. They also advertise iPads for loan. That number is 510-841-3224.

Just throwing these out as possible sources of bargains and free stuff.  Penny pinching options for us all. Keep spending money like this and I just might need them!

written September 23rd, 2017 Continue reading “Free Stuff”

Let the Horse Out of Her Harness

I have been very bad recently. I have not been taking care of business like I should. I have been listening to several audio books on BARD as one distraction.

Even though I cannot actually read the books I like to go to the bookstore to browse. I saw the latest J.D. Robb, Echoes in Death, and – praise be! – it was available for free from BARD!

I would like to ‘read’ the new Lisbeth Salander novel (The Girl Who Took an Eye for an Eye), but it is not available yet in BARD. Watch and wait. Anticipate a good read. The new guy is not exactly Stieg Larssen but he is none too shabby either. I am a Lisbeth fan.

Do you have favorite authors? They are probably available on BARD. If I am just browsing, the BARD offerings are overwhelming for me. I have found browsing the bookstore and looking later for titles that interest me is more productive.

I also sometimes check the new offering and download something out of the ordinary for me but that still sparks interest. Mix it up. Keep it fresh.

We took my photos to the competition site this week. Now I get to wait and see how I fare.

I like to go to the photo show and listen to people spout off about my work. This is especially true if I place. Someone always manages to say he could have taken that photo if he had been able to go on that vacation.

When I talked about that to a friend, she laughed and wondered out loud what these people would think if they knew the photographer was ‘half blind’.

I am not sure I would want that particular piece of information to change their attitudes. I am not sure I would want concessions just because I have a vision loss. Let them be snarky about my work. Let them criticize me like they do everyone else. I chose to be in the fray with all the ‘normal’ people. Snarky, sour grapes comments just come with the territory.

Of course, if they knew, I might get a double whammy. I might get criticized not only for going cool places, but also for ‘courting’ the sympathy vote. Damned if you do ….

Up all night (literally) that same night caring for the dog and asleep from 6 pm until the morning the next night. Just trying to recover.

All nighters at 64 do not have the same effect as all nighters when you are 24. God, how did we do it?

Not that they were derelictions of duty. In my opinion, caring for others as well as for yourself are some of the highest callings.

So those things – plus dance exercise and yoga classes – are the reasons my reports have not been done and my pages have not gotten written. Let things get lax but then tighten back up. Today I wrote one report and about half of another. Tomorrow I go to my hospital’s first vision seminar and take lots of notes for pages. Sometimes you just have to let the horse out of her harness. Sometimes you have to put her back in.

Written September 22nd, 2017 Continue reading “Let the Horse Out of Her Harness”

RIP Beastie Baby

Lin announced that Beastie Baby, real name Lily aka Lily Belly, Belly Baby, Sissy and several more, lost her battle to old age this week. Her “rear end went out”. Not sure of the science behind that but pet owners know to what I refer. After a harrowing 18 hours, we had her euthanized. She was 14. Nothing was going to get better. She was suffering.

Lily lived ten weeks to the day after we were told she was dying of lung disease. Showed them!? Lung disease did not get her. She lasted four years after her ‘expiration date’ since life expectancy on giant breeds is about 10 years. If I dare say so myself, she had a very good life.

Since Lily was ever present when I was home, I expect to fall over her every time I turn around or to see her sitting in the front yard when I come home. (Part of her great life was being a ‘free range puppy’. There was no fence that could hold ‘Houdini Baby’ and we just gave up.) I miss her quite a bit right now now.

Many of us are pet parents. For many of us the most important relationships we have are with our animals. The loss of an animal can be devastating.

Of course, this is not my ‘first rodeo’. (Lots of quotes in this page. Sorry if am giving non-English as a first language people fits.) Lily was dog #7. I will recover and there will be dog #8.

I was going to include some references to grieving pet loss. There are good articles by the American Veterinary Medical Association and the Humane Society. There are therapists who list grief over the loss of a pet as a specialty. Links, Lin? Please and thank you. However, after writing I will have dog #8, I had a brain sprinkle (never have anything grand enough to be called a brain storm). What would it be like if I could not afford another dog or needed help caring for another dog? Dog #8 may never be. That, to me, is a horrible thought!

Back to the web where I found a reference to the Pets for the Elderly Foundation. Now, remember I know nothing and I recommend nothing sight unseen, but this might be worthy of a second look. They list a number of participating shelters. (I found New York’s Humane Society of Lollipop Farm to be intriguing.) Their goal is twofold: saving shelter animals and combating loneliness in those over 60 years of age. It looks as if their financial help is mostly limited to adoption costs but that is certainly a start.

Seniors for Seniors looks like an adoption program for dogs over 7 by people over 60. This program offers post adoption services. [Lin/Linda: looks like this program is for Washington state only.] Purina’s Petcentric lists Seniors for Pets in Florida as a source of funds for vet care. There are probably more I did not find. Be sure to also check your local, no kill shelters and ask about fostering an animal. [Lin/Linda: I found another program pairing senior dogs with senior people, this one in Missouri. It’s called Senior Dogs 4 Seniors.  Purina’s Petcentric website also has an article Helping Seniors with Their Pets.]

In the UK it appears the Cinnamon Trust is offering practical help such as dog walking, rides to the vet and even birdcage cleaning! The goat in the promo picture suggests services are offered regardless of race, creed,color or even species!

If you are an animal lover as I am, it may not be too late to have a pet. There are agencies that could help.

In memoriam:

Lily Mistibear
Whelped: July 26, 2003
Died: September 21, 2017

Written September 22nd, 2017 Continue reading “RIP Beastie Baby”

Taking the World by Storm

One of my yoga buddies has a child who was born with a malformation of the optic nerve. Since she is still so young, no one is totally sure what she sees.

What this child lacks in sight she makes up for in attitude. She is a pistol! Drives her mother crazy.  Sadist that I am, I find it amusing.

I told her mother not to worry too much about it. She may be (what am I saying may be for? She is!) a challenge now but she will need every bit of that determination as she grows up visually impaired in a sighted world.

This brashness, this chutzpah if you will, I see as ego strength. Ego strength is that which allows us to deal with the demands of the world. Ego strength is the ability to maintain a sense of personal identity and sense of self in the midst of all of the nonsense. According to verywell.com those with good ego strength are confident in their abilities and are good at coming up with solutions. They approach problems with the belief they can and will overcome. Challenges are to be mastered. Good ego strength goes along with optimism. Resilience is part of the package as well.

I looked online for info on ego strength and vision loss. Did not find that much. My guess is each one of us came to where we are now with our own, individual level of ego strength, our own perceptions of how we handle problems and of our resources to cope. Some of us functioned pretty much as we expected we would. Some did better. Some did worse.

If we did worse than we expected we would, ego strength may have taken a downturn. Confidence may be low and – unlike our young friend! – we may be wracked with doubt. Self-doubt is paralyzing. It is generally best to ignore it. Low ego strength can also cause emotional reactivity and pessimism. We may put our sense of self-worth in the hands of others.

Ernest Hemingway said “We are all broken. That’s how the light gets in”.  Our impairment may be sight loss but just about everyone else has a problem, too. The idea is to use our problems are impetuses to growth. To display ego strength…even if we fake some of it!

Chabad.org has a nice list of things to remember when you are trying to bolster your ego strength. Their article says you have value and only you can say how you are doing with the challenges you have been given. Don’t let others judge you and don’t use others as a measure of how you are doing. Also, everyone can contribute something to make the world a better place. Be aware of and value your contributions, big or small. Practice gratitude. Accept yourself just as you are.

So that’s that. Thoughts inspired by a strong-willed preschooler with a visual impairment. Taking the world by storm. Personally, I don’t think the world has much of a chance!

written September 15th, 2017

Continue reading “Taking the World by Storm”

Lots of Mayo

One of the best things about the end of Summer here is vine-ripened tomatoes. Our plants did not do well this year but I do take handouts.? I have been being given tomatoes for the last two weeks.

Now, I don’t know about you, but I think vine-ripened tomatoes are truly wonderful on BLTs. With mayo. Lots of mayo. I have been eating BLTs for the last two weeks. With lots of mayo; that is. [Lin/Linda: BLT = bacon, lettuce and tomato sandwich’ mayo = mayonnaise.]

Bacon and mayo mean fat. And what did Lin send me today but an article on fats and AMD. What?!? Do they have a camera in this house? Last time this happened I was going to stand in the sun all day at Briggs Blues Fest. “Sunburn correlates with AMD.”

Now, they are after my BLTs? (With mayo!) Is nothing sacred?

Joan Miller – I actually know a Joan Miller and I bet a lot of you do, too. Just all different ones – is at it again up there in Massachusetts. She is apparently the expert on eyes and fat. Dr. Miller is the person who was experimenting with statins to try to lower risk of AMD. In fact, she co-authored another paper on AMD, fats and statins just this past May. I am printing it off now as we ‘speak’. It is, however, 26 pages of text so don’t expect a quick turnaround time.

What is causing the latest ripple is some very preliminary work Miller is doing on blood testing. The Macular Society ran an article on blood biomarkers for (wet? Not finding that in the Massachusetts Eye and Ear Hospital press release) AMD. Apparently they found 87 fatty proteins, lipids, that were in much higher quantities in the blood of people with AMD. With early warning, different interventions may be used to slow down the progression of the disease.

Which interventions? Dunno, but by the time the Massachusetts study is replicated a few times, we may have something to fight fat in your eyes. Lowering the fat in your eyes means less fatty, ‘eye poop’ (aka drusen) to get between your RPEs and Bruch’s Membrane. That means fewer starving retina cells sending out “Feed me!” signals. Since the “Feed me!” signals are actually the VEG-F, vascular endothelial growth factor, a signaling protein of the body, if we get into the process and interrupt it before the VEG-F (read: “Feed me, Seymour!” signaling) is released, we will not need anything to rid our eyes of the protein. No anti-VEG-F required.  [Lin/Linda: The quotes “Feed me!” and “Feed me, Seymour!” are references from Little Shop of Horrors that she used in a previous page.]

In short: no fat = no drusen = no starving retinas = no ”Feed me!” aka VEG-F signal = no anti-VEG-F shots.

Just to quickly jump across to Europe, I want to mention a lot of the preliminary work for this study was done by a Dutch team headed by Eveline Kersten. Dr. Kersten did a pretty exhaustive literature review of all of the compounds found in fluids from AMD patients. Her literature review gave other researchers an idea of what compounds they should look for in the blood of AMD patients and non-AMD patients to do comparisons. Everyone builds on what others have done. We are in this together.

That is it for now. One other battlefront has been opened. The enemy for this one is fatty eyes. [Lin/Linda: notice that Sue didn’t say anything about giving up her BLTs with “lots of mayo”.  ::grin::]

written September 15th, 2017 Continue reading “Lots of Mayo”

My Friend in Manila?

Happy Tuesday! Waiting for the van to go to school. Yesterday I was picked up at 6:56 to ride 9 miles and be there by 8:30. Dare I say I was not pleased? I just keep turning my mind towards acceptance (DBT alert!).

This is the way it is in my life now and I need to accept such nonsense if I am going to get where I need to go.

Today is day 61 of “your dog is dying.” We took a nearly 40 minute walk yesterday. Pretty active ‘dead’ dog. One day at a time.

I continue to monitor for information on lampalizumab. As of yesterday, September 11, all the news was still financial, but not quite as doom and gloom-ish for Hoffman-La Roche. Just sit tight on that one.

Apellis is drumming up excitement for their geographic atrophy treatment, APL-2. We talked about this before. APL-2 decreased the rate of atrophy growth 29% as compared to sham when injected monthly and 20% when injected every other month. In the second 6 months of the trial the reduction was 47% in the monthly injection group. APL-2 now appears to be the ‘show’ to watch as they go into phase 3 clinicals.

Philip Rosenfeld wrote a short blurb for healio.com. His disclosure statement said he has investments in Apellis. Either he is talking up the product, is truly sincere, or putting his money where his mouth is. In any case, Rosenfeld remarked APL-2 worked across a genetically diverse population sample. There were no stars and no non-responders.

Unfortunately, Rosenfeld also remarked that there is more of a chance of dry AMD developing into wet AMD when APL-2 is used. His opinion was it would have happened anyway in the eyes that became wet, but that will require more research.

We will keep an eye on APL-2.

10 hours later: The van came at 8:01 and had two people going to the local hospital already on it. Late for work? You could say that. Once more the shortcomings of transportation here are giving me fits.

Next, this has nothing to do with eyes but it happened to me today and I do want to mention it. I got an email from a ‘friend’ asking for a ‘favor’. Since my friend lives in Florida I was thinking it was hurricane related.

Turns out it was a scammer ‘phishing’ for money. My ‘friend’ was stuck in Manila and needed $2000. Yeah, right. I asked a couple of questions, obscure stuff that only members of the group I hung with in my 20s and 30s would know, and that was the end of the communication. Maybe my real friend was not stuck in Manila at all!

It appears many people in the world think of Americans as rich and gullible. I am definitely not the first and I try hard not to be the second. I assume it is the same for you.

If your ‘grandson’ emails or calls for ‘bail money’ from Tijuana, be sure to ask a few, HARD, identifying questions. Something that never got online. If the ‘IRS’ or the phone company or gas company or whatever calls and gives you a phone number to call with your credit card number, have someone look up the number independently and call that number to inquire.

Just another public service announcement.

Will check in again later!

written September 11th, 2017 Continue reading “My Friend in Manila?”

Small Pockets

While I am waiting for my friend to show up for pool closing round #2, I would like to gripe about something…again. Seems like one of my more favorite pastimes; I know.

Right now I want to kvetch about those ridiculously teeny, tiny, little pockets in women’s clothing. I just lost a new pair of little binoculars.

They were in the pouch of my sweater. Very shallow. I think I lost them when I bent over to leash the dog at the dog park this morning.

They were something like $12. Not earth-shattering or budget shattering but I don’t want to make a habit of replacing them!

Now cell phones are a slightly different story. I have tried to put my phone in my jeans pocket. When I sit down on the van, half of the time the phone pops out! Replacing this phone would hurt the old pocketbook. I try to be very aware of my phone. In fact, I seem to spend half of my life checking to see where it is.

The simple fact of the matter is this: I carry too much ‘stuff’ for it not to stay where I put it. I cannot be bouncing back to places to check if my things are where I think they dropped. I don’t have a car to leave things in. I need deeper pockets!!!

I am not the only one with this gripe. Reddit had a conversation thread on the subject. One explanation was pockets ruin the lines of clothes and detract from – basically – showing off your figure. I am 64 years old. I don’t care anymore!

Then there is the economic explanation: selling purses makes money. I carry a purse. Actually, my purse is a small backpack. It is stuffed with the rest of my vision stuff. My phone – when I can get a few square inches space to put it in my bag – goes directly to the bottom, never to be seen again. I don’t want it there.

Then there is the lack of pockets. No pockets. Period. The reasoning behind this also appears to be economic. That tiny little bit of cloth that you don’t think would cost much at all, that little bit that would make a decent pocket, would add up to tens of thousands of dollars in lost profit if you are making millions of pairs of pants. Sigh.

Considering there were about a dozen things online complaining about the silly things that pass for pockets in women’s clothing, I realize I am a voice crying in the wilderness. I realize nothing is going to happen. After all, those people got no satisfaction either.

And speaking about things that are not going to happen, two or three of those articles were about adding your own pockets to pants. Sewing? Uh, no.

So, as of now, I guess I replace the binoculars and try to be more careful. Maybe I could carry a second purse. Maybe I should tie a string on everything. As it is, I hang my glasses, glare glasses and monocular around my neck. How much more before I won’t be able to hold my head up straight?

Why can’t I just get clothes with decent pockets?!?!?!?!

written September 10th, 2017

Continue reading “Small Pockets”

Bad Patches

Today, September 8, 2017 started and sort of ended with mini pity parties for me. We had a speaker this morning and I needed to go to the office ‘annex’. For some reason transportation decided they needed to get me to my 8:45 meeting at 7:30. Never going to understand that.

I was accepting of it and took along things to do for an hour. I am getting used to the indignities of the state subsidized transportation system.

After all, I am ‘handicapped’ and ‘elderly’. (You know I find that hysterical; don’t you?)

I was okay with it until my colleagues started to cluck their tongues and make a fuss over the absurdity of it all. Apologies for not thinking to offer well ahead of time and promises to do better. I was chastised for not asking by half the room. Then I had to fight the impulse to cry.

Not sure what upset me. It could have been being reminded it is not fair, whatever that means. It could have been their willingness to help. It could have been being reminded I am now different. Maybe a combination.

Whatever it was, sometimes it just smacks me (you, too?) between the eyes. Believe it or not, I am often able to forget I am now handicapped/disabled/impaired/whatever. Other times….I am sitting by myself an hour and a half early and people feel sorry for me and I feel sorry for myself and that is all she wrote.

The rest of the work day went great. Busy and sort of productive. Of course, I had to get a ‘seeing eye colleague’ to read a particularly blurry fax to me, but that was not a problem. People help.

(Of course this was the same colleague who was making the cracks about allowing the one, ‘blind’ staff member to cut the baby shower cake we had for another colleague! News flash: I could not cut equal pieces when I could see! Bringing to mind a corruption of an old joke: “Doctor, if you fix my vision, will I be able to cut a straight line?….Funny, I couldn’t do it before!” Da dum dum!)

And fixing eyes brings me to the second letdown of the day. I – and I believe others – have been thinking lampalizumab was a slam dunk. It was going to go breezing through the phase 3 trials and help to cure the world. Did not happen. Lampalizumab failed to show a statistically significant effect as compared to sham and the one trial has been terminated.

I looked all over the web trying for specific information and all I found was the press release repeated by about eight, different services. Not sure what happened and I don’t believe they know what happened. Here’s one version of the press release from BusinessWire.com.

Not that I am anyone you should listen to, but I would recommend not giving up yet. They still need to further analyze the data. It is possible they got a split just as they did the last time. Maybe 75% of the samples were non responders but the other 25% responded with a 40% slowing of the degeneration. 0 + 0 + 0 + 40 divided by 4 is 10. An average of 10% would not meet criteria but the 40% would.

Just wait and see. Some days have bad patches, yes, but they often are just that, patches. In the big picture, we are doing okay. Keep on keepin’ on.

written September 8th, 2017

Continue reading “Bad Patches”

Get Busy Living

Closing the pool has been an adventure every year.  Today I discovered the diameter of the drain on the new sand filter was much larger than the old one. The standard hose I usually put on it was not going to cut it. Off to our local do-it-yourself store!

Once I got there and got someone to help me, I realized this was not going to be an easy fix. We were going to have to rig it. I had presented the store guy with a ‘problem’.

Problems energize people. Before we had put together a ‘fix’ we thought would actually work my little problem had engaged three of the store guys for over 15 minutes. They were scurrying back and forth, consulting on all sorts of possible solutions.

If the problem-solving process had gone on any longer, I bet I could have netted two or three more helpers. They acted like it was the most fun they had had all day!

Got me thinking. Got me thinking about part of the reason I am not interested in retiring. I thrive on the challenge.

Many people say they long for the easy life. I sometimes wonder what they would do if they got their wish …day after day after day. Shudder!

The blog Get Busy Living agrees with me. The author points out we all started out attacking challenges.  However, he (she?) says as we have gotten older we have lost our sense of fearlessness. We have abandoned the struggle in favor of lives that are ‘safe’ and ‘secure’. No problem. No risks. No fun.

In patheos.com’s blog entitled The Value of Challenge they talk about the sense of satisfaction and purpose we get when we tackle challenges. Challenges bring richness to our world. Much better than spending all day telling people plumbing supplies are in aisle 40. Ask the guys at the do-it-yourself yourself store!

How can we maintain challenge and accomplishment in our lives now that we are older and have a vision loss?  Looking at the more professional literature I discovered Hans-Werner Wahl in Heidelberg wrote about the psychological challenges of late-life visual impairment. Wahl quoted research on secondary control strategies, disengaging from no longer attainable goals, and accommodative mode. Accommodative mode is finding something that can be done rather than giving up.

I won’t be able to work in the school forever, but maybe I can do more counseling at the office. I cannot drive myself anymore but I am planning on doing more bus trips. Both examples of ‘accommodative mode’ will provide me with new experiences and challenges.

How can you disengage from old goals and substitute things you are capable of doing?  Listen to books on things you have never explored before? Learn how to use new technology for low vision? Cook foods from different ethnic groups? Read this blog? …I know; don’t be silly!?

I was always told that when God closes a door, He opens a window. And yes, sometimes it is an attic window three stories up. But just think of the stories you will have to tell after finding a way through that window!

Enjoy the challenge!

written September 4th, 2017 Continue reading “Get Busy Living”

Preparation: Start Now!

Greetings from a rainy Labor Day weekend. Supposedly this rain is a Harvey leftover. We had a ‘little flood’ here six years ago right about this time of the year. What a mess! Hubby and I did not get much of that; we are on a hill. However, I went into town to do some shoveling and needs surveys….Never got so sick in my entire life. Flood mud crud is nasty business, folks. If you are helping, wear masks and goggles. Take any innoculations they offer. I was sick literally for weeks.? Once more, try to profit from my stupidity!

Of course, the good news is what doesn’t kill you can make you stronger. Except for the food poisoning I don’t think I have been sick since! ?

Anyway, in the States Labor Day is the unofficial official end of Summer. That means today before the rain we were preparing for cool weather. The houseplants came in from their summer home on the deck. I picked the tomatoes that had not yet ripened for my friend’s mother. She is supposed to make a mean green tomatoes pie. Ran into a little snag in trying to close the pool, but that will get done before the leaves start to fall.

Preparation. We prepare for Fall. We prepare for holidays. How many of us prepare for vision loss?

Many of you are in the early stages of this disease. I truly believe research will soon make it possible to slow or even arrest the progress of AMD. I believe you could easily be spared the worst of AMD. But just the same, preparation is a good thing.

Harley Thomas is blind. Last February he wrote a piece in his blog. The title was, of course, How to Prepare When you Are Going Blind. Harley (he looks like a nice guy so I will refer to him by his first name) says preparation can give you a sense of control. He agreed with other people I have read in saying starting now to learn skills will make things much easier later.

Harley would approve of us all learning about our disease. He would also approve of how we are coming together for support. He talks about ADA and telling your employer about your sight loss.

There are lots of references and links on Harley’s page. One of them is entitled “What to Tell Your Employer When You Are Loosing Your Sight”. I have not read it yet but somehow I don’t think it says to call work in hysterics directly from the doctor’s office like I did!

Harley suggests habilitation/rehabilitation and independent living courses. He also talks about getting your house organized. All good ideas with links to how to posts. [Lin/Linda: if you’re curious, there’s a difference between habilitation & rehabilitation.]

What Harley does not talk about are transportation and finances. To me, these are huge! I believe trying to get services and benefits from the government can be one of the most convoluted and frustrating things you have ever done. It literally took a couple of months to line up transportation. I had straightened our financial house several years ago when I got an inheritance. If I hadn’t, the income loss could have been problematic. Looking into the basics of getting around and doing what you can to get – and keep – your finances in order is crucial. Start now. You will be glad you did.

Written September 3rd, 2017 Continue reading “Preparation: Start Now!”

So Confused!

I am confused! Not exactly Earth-shattering news, huh? Anyway, I might, maybe, should withdraw what I said about ‘lamp stuff’ being available early 2018. I really am not sure.

My BIG retinologist (Dr. Carl Regillo, Wills Eye Hospital) told me he was thinking of starting me on lampalizumab at my next appointment, which is December, 2017. I heard it. I am going blind, not deaf. We know it would not be straight phase 3 because phase 3 enrollment closed sometime ago. I assumed phase 4 which would have opened it up to just about everyone everywhere. However, articles Lin has found – and I will go over – suggested that is not the case.

I went back to clinical trials.gov for some info. The id number for the study is this: NCT02247479. The study series started September, 2014. That would be phase 1. The date for final data collection for phase 3 is December, 2017 with data analysis and publication by December, 2018.

Now technically, if sites are going to roll immediately into a phase 3b, 3/4 or even a limited 4, I could be in line to have shots in December. Might have a lot to do with who my doctor is. Other people might have to wait. I might have to wait. No clue. [Lin/Linda: we have some clues since she wrote this that are at the end of the page.]

So, there it is. As far as I heard from my doctor, he was thinking about getting me on lampalizumab as early as December 2017. As far as the published articles are saying, we are looking at early 2019. My guess would be to split the difference, early fall, 2018 according to my ‘crystal ball’. Why, because Hoffmann-LaRoche, the parent company, has big bucks tied up in the research and is probably chomping at the bit to make an even bigger profit.

I am a cynic, so shoot me. I sort of think I was born cynical. Either way, my prediction is just that, a prediction. Don’t hold me to it.

All I can say right now is wait and see what happens. “Tune in in December for the next exciting installment of ‘Sue in the Land of the Visually Impaired!’ Will the Wizard try to slow her sight loss? Will he succeed? Will he try to help other citizens of the Land? Stay tuned here in December to find out!”

Sorry I assumed. We all know about assuming… and if you don’t it is ‘to assume will make an ass out of u and me’. Cute, huh? I probably just failed to factor in who my doctor is, access to all of the good stuff and all, because I know I heard him say it. I don’t hallucinate…all that much.

Which leaves me with exactly no space to go over the article Lin sent me. Don’t worry. It is a three-day holiday weekend. I will have lots of time to write other pages. What? Did you hear that? That was the sound of Lin groaning in Georgia…? Bye!

Lin/Linda here: Yes, I am groaning but not for the reason Sue originally thought.  When I searched clinicaltrials.gov for the study that she referred to above, ie. NCT02247479, I came up with 2 studies, one with that number with the information that Sue shared above.  The second one has the study number NCT02745119.  The title of the second one is “Long-Term Safety of Lampalizumab Intravitreal (ITV) Injections in Participants With Geographic Atrophy (GA) Secondary to Age-Related Macular Degeneration (OMASPECT)” and it says it is phase 3 & is now recruiting and ending in October 2019. Maybe this is how she will be getting the ‘lamp stuff’??

written September 2nd, 2017 Continue reading “So Confused!”

Research: Dry & Wet AMD

Hello! I am going to get to the article Lin found on BrightFocus Foundation’s website about ‘lamp stuff’ aka lampalizumab but first I wanted to quickly mention a Google Talk by Isaac Lidsky. The title is Eyes Wide Open.

Lidsky began losing his sight to retinitis pigmentosa when he was 13 years of age. Although he has been totally blind for many years, Isaac Lidsky is extremely accomplished and has developed a philosophy that includes all sorts of concepts such as being present in the moment, doing what works and not abdicating responsibility for your life to your personal heroes and villains. His half an hour Google Talk may make some people rethink their attitudes towards their sight losses.

While I don’t expect many people to feel ‘lucky’ they are going blind – and Lidsky does consider his blindness to have been a blessing – Lidsky’s perspective on things can be thought provoking.

OK, onward to ‘lamp stuff’. We have quoted Joshua Dunaief before. One of the most helpful things he does for me in the current article is give us a pronunciation guide for lampalizumab. It is lamp-uh-liz-you-mab. Sort of like “Lamp!…uh, Liz, you mad/b?” You know, what you say when you knock over Elizabeth’s favorite light.

We have gone over the study results already in these pages. Complement factor I variant folks got kickin’ results. The rest of us, not so much. A reason for genetic testing for us before we submit to needles in the eyes, literally!

Dunaief says results are expected in 2018. Yep, December is their target date for publication. He does not mention phase 3 is over this December as is indicated in clinicaltrials.gov.

So, basically, still not really sure what is happening with ‘lamp stuff’ and me. May be offered it in December. May not be. May accept the offer. May not. I would love to know my genotype as compared to the SNPs they found in the experimental sample. Being a responder would be incredible. Being a nonresponder would be very bad. Dilemma.

And information for our ‘wet’ friends for my last 200 words. In JAMA Ophthalmology Jackson, Boyer and Brown reported the results of an experiment with an ORALLY administered vascular endothelial growth factor (VEGF) inhibitor. In other words, they have been experimenting with a pill they hope would do the same thing as your anti-VEGF shots.

The stuff is a tyrosine kinase inhibitor. It caused a lot of upset tummies and diarrhea (5 and 6 subjects out of 35 respectively) but the side effects were not bad enough to stop the experiment. Some people did stop because of liver problems. Those with liver issues would probably not be candidates for the treatment.

Only 40% of the total required rescue shots. Even those people received fewer injections than they had without the pills.

Before you all rush out for your X-82 pills, bear in mind this was a phase 1 experiment. That is safety and tolerability, guys. They are moving on to proof of concept, phase 2, with a bigger n. (n being the number of subjects in the study, remember). Check clinicaltrials.gov if you are interested.

Remember we all do our part in this fight. If you have a strong liver and a strong stomach, X-82 might be your kind of research. You might get to be a lab rat before I do!

written September 2nd, 2017

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Home Away From Home

We all want to be independent and live in our own homes as long as absolutely possible. Still, there may come a time that vision loss and other disabilities make it difficult for us to do that.

Many people are looking at alternative living arrangements to satisfy their needs. For example, my mother-in-law lives in a ‘continuing care community’. She has her own house but the facility takes care of all the outside maintenance and any interior repairs…right down to changing light bulbs if need be! The community has affordable van transportation and a community center where some meals and entertainment are offered. If there is an emergency, people from the facility are right there. They also maintain their own, small security force.

If my mother-in-law should require assisted living and/or a nursing home, they are right there on campus. She is guaranteed placement.

Of course, my mother-in-law does not have a vision loss – I am the ‘lucky’ one there! – but I would suspect many of the community residents do. Problem is, many if not most of the care communities have not caught on to the fact they actually have visually impaired residents! And if they do realize they have them, they don’t know what to do with them.

If you are interested in assisted living, what should you, as a visually impaired individual, look for in a facility? After all, we don’t intend to sit in bed all day. We want to be as independent as possible and the staff should help, right?! Right!

VisionAware to the rescue. They have a short article on Help for Seniors with Vision Loss: Tips for Assisted Living Staff Members. They also did a short webinar and have the transcript for that at the end of the page. While this article is meant as a tutorial for facility staff, you or your agents can use it when shopping for assisted living.

We have talked about many of these before in the context of making your home safer and more livable. It is important to control glare and use contrast. This includes contrast tape on all stairs. Bold fonts and contrast should be used on handouts and enlarged or tactile versions of games should be in the game room. Staff should understand how to function as a sighted guide. Hallways should be free of clutter. Low furniture and throw rugs likewise should be avoided.

When you go for your tour, staff should make an effort to talk to you about the layout of the facility. Descriptions should be just that: descriptive! If the dining area is 20 feet on the right, it is 20 feet on the right, not up here somewhere.

Then of course we come to a horrible blind joke from when I was a kid: how do you punishment Helen Keller? Rearrange the furniture! Meaning, if you are looking at a facility where they rearrange furniture and move things from their typical places on a whim, it may not be the place for you.

Hoping no one has to make such a move before they want to, but if assisted living becomes a necessity for you, try to make sure the place is attentive to your needs. After all, you are a VIP!

Written September 2nd, 2017 Continue reading “Home Away From Home”

VIP Etiquette Book

In real-time we are coming up on Labor Day weekend, the end of social/cultural Summer for us in the States. Autumn is snapping at our heels. You can feel it in the air.

Lin wants to catch us up in real-time so we can operate like a ‘real’ blog and you all can follow my life as it happens.

Now whoever the devil would want to follow my life is beyond me. Not exactly living like the Kardashians here. (Thank God, actually. Too much for me!)

Anyway, right in the moment we are well. The Beastie Baby can quote Mark Twain, “The reports of my death are greatly exaggerated”. She is coming up on seven weeks post our being told she was dying. We just took a half an hour walk.

I have two days in at school. Hit the ground running. For now I am still functional.

Today was the last class I taught for this DBT module. My colleague is feeling better and wants to come back to teach a module. Since I won’t be hammering you with DBT too much, let me slip this in: living in the moment for the dog and how long the job may last. No amount of worry will keep her alive or keep my vision from failing to below acceptable levels.

Hoping to go kayaking Sunday. May be the last time for the season. However, other things are coming up. My local eye specialists are trying to put together their first educational seminar, hot air ballooning is coming soon and I found a bus trip to Lancaster’s Sight and Sound Theater for their Christmas pageant.  Building in things to look forward to makes me a happy camper.

So, if anyone truly wanted to know what I am up to, there it is. Doing OK. Nothing spectacular, but yes, I am continuing to be my irritating self in spite of my vision loss. Can be done with a few modifications.

I did have a couple of ‘low vision dilemma’ moments when I went back to school, though. Wondering what you folks do with people who are overly solicitous and ‘feel bad’ when you are left to your own devices.

I don’t know about you, but I try to work up to my limits and do what I can without help. On the staff day before kids got there, we were on our own for lunch. I walked about a third of a mile to a Subway. A colleague felt terrible I had walked and she had not been there to give me a ride.

I told her I was perfectly capable of asking for a ride if I had wanted one, but it really did not help the way she felt. The thing is, I really am not a masochist. If it had been a chore for me to walk, I would not have done it.

What do you folks do when someone gets all upset when they don’t jump in to help you? This is even when you do not need or expect help.

Where is this in the VIP etiquette book; huh? Give me your thoughts.

written 8/30/207

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