Category: Sue’s Musings

From the Top of the Pile

Greetings. Another day gone, but I am not sure where. After doing some work-work and yoga and a puppy walk and other assorted nonsense, I decided some of the piles in my home “office” – and believe me, I use the term loosely – had reached critical mass. What do I have in this mess, exactly?

Well, it appears generic drugs for wet AMD are coming our way. Or maybe they are “look alike,” drugs but that term has a bad connotation. The article says “biosimilar” so maybe we can go with that.

Whatever term you use, the Indians are coming up with some medications that pretty much do the same job as some anti-VEGF drugs being manufactured here and in Europe. The one the Medscape article highlights is called Razumab and it is a stand-in for ranibizumab.

The article goes on to explain biosimilar drugs are designed to replicate the molecular structure of existing biologics. Like generics, they cost much less…hmmmm. I don’t think I have to guess what big pharma thinks about that!

As might be anticipated, these biosimilars are not yet available in the States. The FDA has not yet approved any biosimilar for ophthalmic use but that does not mean it won’t happen. The Wiki people have a current list of 11 biosimilars already approved.

As of the date of the article, they were having a few problems with manufacturing consistency from batch to batch. In other words, not yet ready for primetime. However, stay tuned.

We did a cursory look at the Retina Specialist Pipeline Update several pages ago. Looking at all of the potential new treatment for wet AMD, I kept seeing the term “novel antibody.” I just did a search and did not get far on that term. My best guess is they are manufacturing new antibodies for specific purposes.

Anyone want to explain “novel antibody” in one and two syllable words, I would like to hear from you.

And here is an article of everyday practicality from WebRN. The title of the article is Macular Degeneration Aids for Grooming. The article suggests a lighted make-up mirror for both sexes and electric rather than blade razors. The better to not cut your own throat, my dears. Shampoo should be in pump bottles so you are not fumbling with the cap and/or spilling slippery shampoo in the shower or on the bathroom floor. You can also get body lotion in pump bottles. Same concept.

Although the WebRN article does not say so, a system to distinguish your shampoo from your lotion is also a good idea. For example, some people put one rubber band around one container and two around the other. Or, pick products with distinctive scents. Strawberry shampoo and lemon lotion, for example. Yes, there is a risk of ending up smelling like a fruit salad but that is better than “washing” your hair with body lotion!

So, my one pile is a little smaller now. There is so much good stuff out there! We’ll just keep looking at it for you. And if you have any topics you want to be covered, let us know. Otherwise, you might just keep getting what floats to the top of the pile!

Written August 19, 2018

Next: Life is Not Fair

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Coming Out

Hi. Friday evening and it is kicking up a good thunderstorm…Gee, how novel.

I am still back on why people don’t come out of the visually impaired “closet”. I had a client today who has a rare medical condition and does not want to share with colleagues either. Once again I am made aware of something and examples of that same thing pop up like toadstools.

Anyway, he basically said if people know he is different, he will be treated differently. Made me think: how different are we?

Looking on the web I discovered in a December 2, 2014, Newsroom article that at that time 40% of the population 65 and over had a disability. This was 15.7 million people! Now granted, the largest group was mobility issues but vision problems came in fifth.

In other words, once you hit 65, you can expect nearly half of your peers to have some sort of disability. Everyone into the pool! Maybe we are not so different after all.

If you are religious or have an interest in philosophy you have heard people say pain and suffering are part of the human condition. They just affirm we are human. They allow us to join others and experience being human together.

Ok. They have a point. Shared adversity often binds people together. Anything else?

Todd Hall in 8 Ways You Can Grow from Suffering has a couple of points I found interesting. Hill’s fifth point was suffering deepens our appreciation of our vulnerability. We are all vulnerable. For example, this time places flooded that I cannot remember flooding before. Houses on hills got water-filled basements. The Fates are capricious. It is the human condition: we are vulnerable.

Hall’s sixth point is suffering allow us to accept our limitations. He pointed out acceptance of limitations takes much less energy than it does to fight it. There is a certain peace in that.

Having limitations binds us to the rest of humanity. Remember “No Man is an Island?” In our limitations, we reach out both to ask for and offer help. In others words, it is not just shared adversity that can bind us together but individual adversity as well.

So, the truth of the matter is, having a disability does not make us different from much of the rest of humanity. We are not the odd men out. And if you factor in the vulnerability factor – bad things could happen to anyone at any time – each of us is just one of seven billion in the same fix. The fix we are in is being human.

One last thing before I close. There is only one letter different between human and humane. It is, of course, the “e” although it would have worked out better if it were a “u”. If it were a “u”, I could have been really glib and said “you” coming out of the “closet” about your vision loss and joining in would allow the humans around you to become humane. Compassionate, one of the virtues is expressed and strengthened in the presence of suffering.

Pretty good argument? But what do I know? I am, after all, only human.

Written August 17th, 2018

Next: From the Top of the Pile

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I Know Who I Am

Hello, there once again! How y’all doin’. Today was “interesting”. Somewhere in India our server [not for the website] went down. Yes, we send all of our data to India. Anyway, no server meant no place to take notes, no way to schedule clients and no way to know our schedules! I had a “mystery guest” checking in every hour! “Mystery guest, enter and sign in please!” Who remembers What’s My Line?

Of course, since I had only a way to take paper notes, everything will have to be put into the cloud…but not tonight. Tonight I get to talk at you.

Lin told me she posted some questions about “coming out” of the visually impaired “closet”. She put a video by Fern, a motivational speaker, along with them. Some of the questions concerned whom you may have told and why you may not have told. Fern talks about embarrassment and shame and the judgments and misunderstanding that may have engendered those feelings.

I assume Fern was a child with visual impairment. I assume she had some tough, social interactions growing up. Kids can be crazy cruel. Trying to navigate the ups and downs of elementary school – not to mention middle and high school! – can be tough on a kid who is different.

I was researching relationship repair DBT style and found DBT Relationship Recovery 101. The second bullet caught me. It said “Work on your sense of self- worth”. Wow. A strong sense of your own self-worth allows you to let judgments and insults just roll off your back. In other words, “Who are you and what the hell do you know about me? I know who I am.”

A bit ago I had someone get angry with me and tell me she wanted nothing to do with me. Ouch. I fretted about it way longer than I should have. Then I got into wise mind and had an epiphany: for all my (many) faults, I ain’t all that bad! Her loss!…and yes, every once in a while if I do something cool like going to Summer Academy I think “Not worth knowing; huh?”

And a couple of those faults? I am not above being petty and gloating…I might actually have to work on those…later. ?

Remember I mentioned one of my yoga instructors has a visually impaired child? She is 5 now. One of the reasons I would like to still be working in school this year would be to watch this little dolly take kindergarten by storm. According to her mother, our little girl walked up to the special education supervisor and announced herself with “Hi! I’m new here.” I do believe she has enough moxie for three kids and I, for one, am glad she does.

That is a five-year-old. She seems to have been born with tremendous strength of character. (She flushed about three pairs of glasses down the toilet. She was NOT wearing them. At that point I think she was 3). But what about us? I would contend most of us who have come to visual impairment later in life have track records of competence. We have mastered all manner of things.

“Who are you and what the hell do you know about me? I know who I am.”

Remind yourself you have been there, done that and have the T-shirt – with “winner” printed on it – to prove it. No one gets to judge you. You know who you are.

Written August 16th, 2018

Next: Filling the Pumps

HOme

Coping: A Review

We are coming to the end of the first dry day in about a week. Apparently, it is “monsoon season” in Central Pennsylvania. Creeks and the river have been running down main roads and getting from here to there has become an adventure in problem-solving, not to mention creativity.

Having clients stranded or pumping out basements has left me with time to “play catch up” and actually get some things done at work. Hallelujah. Not as stressed as I was.

Lin told me there has been an influx of new Facebook group members. She reported there are many new members struggling with the diagnosis and wondering about the future. She has been republishing pages about coping skills, but I thought I would do a quick review anyway.

First of all, the chances of you going totally blind are small. Age-related macular degeneration is a condition of the macula and affects central vision. It is important all patients with AMD to learn the facts about their condition. Knowledge truly is power. What we imagine is often 100 times worse than reality. Often that monster under the bed is actually a dust bunny. And no, I am not trivializing AMD and calling it a dust bunny. However, it only has sharp horns and razor-sharp fangs if you give them to it.

Get the facts. Knowing what you are dealing with is a lot less scary than what you imagine.

Along with getting the facts goes acceptance. We cannot solve a problem unless we accept we have a problem to solve! Acceptance that, yes, you are truly in this fix will allow you to go and look for help. Fighting reality may work for a while, but in the end, we get creamed.

I will admit I got more from agencies than many other people get. I admit it. I have a big mouth and a will of iron. I am obscenely stubborn. For another thing, I am still working. People who are not working don’t get as much. After all, in my state Blindness and Visual Services is a subsection of the Office of Vocational Rehabilitation. Their whole goal is to keep you working.

That means ideally, if at all possible, you go to agencies while you are still working or at least are in a position to go to work. If you are not in those positions, go anyway. People who do best with vision loss are those who learn practical skills and get the necessary assistive devices. Even if they won’t pay for your devices, agencies can make recommendations for things you might eventually purchase.

If I had to say which one thing to have, it would be an iPad. There are multiple, free apps that can take the place of more expensive equipment and do the job almost as well.

So those would be my recommendations for starting to cope well with AMD. The start is to reclaim your power. Remember vision loss can be damn inconvenient, but in the end, it is a limiting factor, not a paralyzing one. And in the end, just like traveling in a flood zone, with a little problem solving and creativity, you can get there!

Written August 16th, 2018

Next: I Know Who I Am

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Where’s Your Hope?

Hello, there! I have been trying to get some things done today….I gave up as of about 30 seconds ago. Nothing is happening.

Wait…that’s a lie. Our Facebook group just hit 1,700 members! Congratulations to Lin and everyone who has worked to make that group a success. [Lin/Linda here: as of my typing, there are at 1,738.  The 38 were added this past week!]

And while congratulations are going out, we should also send one to my former retina specialist who I am ever hopeful will be my new research director, Carl Regillo. Dr. Regillo was named to the 100 most influential ophthalmologists in the world list. I find that pretty impressive.

And moving right along, researchers are expressing “cautious optimism” concerning regenerative medicine (read “stem cells”) treatments for AMD. Vavvas of Massachusetts Eye and Ear clarifies they are transplanting “differentiated cells…derived most often from iPS cells” that were themselves derived from stem cells.”

IPS cells are induced pluripotent stem cells. They can be induced directly from adult cells. These cells are “regressed” back to a state that will allow them to reproduce theoretically forever and also to develop into any one of every potential cells in the body. Perfect for “replacement parts”.

In other words, iPS cells avoid the ethical dilemmas that can be associated with embryonic stem cells.

Vavvas cautions it is still early days for regenerative medicine and all of the hype may be just that. Hype. Testimonials and anecdotal “evidence” are not scientific.

Massachusetts Eye and Ear is reported to be blazing new territory by combining regenerative medicine with neuroprotection approaches. The second of these approaches involves attempts to slow down cell death.

Vavvas goes on to once again caution against false hope.

The Cambridge English Dictionary defines false hope as putting your faith in something that might not be true. Fair enough. I would agree the crazy headlines after Coffey published were more than a little over the top. I would agree we have miles to go before we sleep, to paraphrase Robert Frost. I would contend, however, that something that might not be true still has the potential for being true. And that allows me to hold out hope for a regenerative medicine treatment if not a cure.

What it comes down to for me is, you have to have hope in something. Being told you have a condition for which there is no treatment and no cure is, well, disconcerting, to say the least.

So which basket do you put your eggs into? Which treatment are you betting on to actually do something substantive for us? Or have you decided there really is no hope?

To quote another great poet, Alfred Lord Tennyson, it is better to have loved and lost than to never to have loved at all. It just might be better to have false hope than have no hope.

Neal Burton in a 2017 Psychology Today article wrote that hope is an expression of confidence in life. It is the basis for virtues like patience, determination, and courage. Not bad. I can live with those outcomes.

So, yeah. I know we need to be cautious, but I still have hope. I still believe regenerative medicine is going to come through for us. Which potential treatment do you believe in?

Written August 15th, 2o18

Next: Coping: A Review

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Sue’s Best Pages – Part 3

continued from part 2

Part 3: The highest-rated pages

I hope you’ve seen the box at the bottom of all our pages where you can rate Sue’s pages.  It’s been helping us to see what resonates with you. It also helps us find pages that we can recommend to others.

If you haven’t been rating the pages, we really wish you would! ::smile::

  • One Foot in Front of the Other
    • Sue writes, “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.”
  • Hindsight is 20/20
    • She writes, “First, you are not going everything black and dark blind. You may not be doomed to progress to end-stage AMD. You did not cause this. There may come a time you are seeing things. There is an amazing amount of hope for treatment and eventually a cure for AMD.”
  • Sight Loss as a Challenge
    • She writes, “Accepting you are losing your sight will free you from hopelessness. It will free the energy you are using on worrying and fretting and allow you to use that energy to find ways to enrich your lives.”
  • Not As Cut and Dried
    • Sue writes, “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.”
  • Overcoming Uncertainty
    • Sue writes, “Remember this journey is not a sprint, it is a marathon. In fact, it is a marathon that we don’t even know the course. Keep an open mind and don’t latch onto anything out of fear. Eventually, we will find the way.”
  • Special Favors
    • Sue writes, “‘Tis a dilemma, so I am throwing it out for discussion. What is too big of a favor? When should you not ask? When should you refuse an offer? What are the rules on this????????”
  • Good Thought, Bad Thought
    • Sue writes, “Good thought and bad thought. Or actually bad thought and good thought. Bad thought that I may have reached this level so quickly. Good thought: could the slide be over? Will I soon stop losing vision?”

Next: Using the Tools from DBT (Dialectical Behavioral Therapy)

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Filling the Pumps

At approximately 15:45 hours yesterday, the body of a dark-colored field mouse was observed at the bottom of the pool. It appeared to be death by misadventure. However, when this technician attempted to remove the body from the scene, she was jumped upon by Etta Puppygirl, of this address. Ms. Puppygirl hit this technician squarely in the back, and she pitched forward into the water. While the evidence at the scene suggested accidental drowning, should other evidence come to light, Ms. Puppygirl should be further investigated.

Jeez. Do other CSIs go through this?

Ok. Enough of the nonsense. Sometimes I just cannot help myself. 🙂

And in the real, official news…Retina Today interviewed Carl Regillo about the ranibizumab port delivery system. It appears the RPDS is placed in the sclera. It is situated in the conjunctiva, the mucus membrane that covers the front of the eye. Where in the conjunctiva? It is placed in the pars plans (literally the “flat part” of the eye.) The pars plana is located near the junction between the sclera and the iris. That is the white part and the colored part. While the reservoir is initially implanted in the operating room, sutures are not required and it can be refilled on an outpatient basis.

Results of phase 2 clinical trial should be out very soon. The name of the study is LADDER.

While the RPDS system is the popular guy on the block now, reading this article, I found out it has competition! Replenish has invented a system called the Ophthalmic MicroPump System. This device sits on top of the sclera – not sure how that would work for me – but it is programmable. That part is cool.

Neurotech Pharmaceuticals has been working on Encapsulated Cell Therapy. This device will contain genetically engineered cells that will actually produce the substances needed to keep things working well. In other words, there would be no reason to refill the device. Put really basically, the other devices are filled with eggs. This device is filled with chickens that produce all the eggs needed.

As of the writing of this article, Neurotech Pharma was having a few problems producing the perfect “chicken.” That does not, however, mean they have given up.

And speaking of weird science and Carl Regillo, Healio reported Regillo will be heading up the only American feasibility study for the Alpha AMS Sub-retinal device.

This device is not for us. It is for retinitis pigmentosa patients who are blind. The Alpha replaces the missing and nonfunctional photoreceptors and apparently interfaces directly with the visual part of the central nervous system.

I found a 2013 article in MIT Technology Review that compares the Alpha to the Argus, the original artificial retina system we discussed. It appears the Alpha requires no external hardware while the Argus uses a camera mounted on glasses. The Argus surgery is three hours while the Alpha surgery can be up to 10 hours. Vision produced by either system is not great, but remember something can be better than nothing.

So that is that. No more drown mice today so I am hypothesizing we do not have a serial killer in the house. I would like a way to know which Puppygirl chewed on the furniture, though. Perhaps I need a consultation! Anyone know a forensic dentist?

Written August 5th, 2018

Next: Coming Out

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Same Stuff Different Day

I have been home from State College for about 12 hours. Tedium has set in quickly.

The online dictionary defines tedium as the state of tediousness. Gee, how informative! (Sorry. Feeling snarky.) Tedious means monotonous, boring, SSDD (Same Stuff Different Day).

I have an inkling of what the problem is. State College was exciting when I hardly even got there. I was there last year. I was there in May. I will be there next month and hopefully again next year. Something I counted on to break up the monotony has become more monotonous.

In Never a dull moment by Kirsten Weir for the APA, John Eastwood described boredom as being “the unfulfilled desire for satisfying activity.” As I said before, it is not a lack of things to do, but a lack of things you want to do. Been there. Done that. Got the t-shirt. In other words, sorting laundry, and mopping floors today has not improved my spirits.

James Danckert has discovered those who bore easily may be more susceptible to mental health problems. One of these problems is depression. Although boredom and depression are highly correlated, they are separate states. Eastman suggested boredom can lead to inner focus, negative rumination being a factor in depression.

Out in the “real world” most tedium comes to an end. But what about some of us who are homebound? Being underwhelmed, as it were, leads to some behaviors we should not have. Think alcohol abuse and overeating.

There is even some evidence the phrase “bored to death” is not hyperbole at all! In a longitudinal study of British (hi, guys!) civil servants, the ones who reported being chronically bored were more likely to die young. Yikes!

So what to do about this tedium issue? Another researcher, Van Tilburg suggested bored, meaningless activities lead to people trying to generate meaning in their lives for themselves. Sometimes this can lead to negative outcomes.

The idea seems to be to find a positive purpose. What can you do to give meaning to your existence? To your vision loss? Maybe you want to sign up to call other homebound folks to check on them and chat. If you are going to engage them in conversation, maybe you should listen to some news features. Maybe you can call some people losing their sight. You might have a common interest!

Are you still living in your hometown, the town your great-grandparents lived in, too? Remember some stories you heard and record them for the historical society.

Did you miss out on instrumental lessons as a child? Always want to be able to sing without sounding like a toad with laryngitis? It is not too late. I would suspect a few phone calls could find instruction at a reasonable rate. Even a kid in a middle school band could give beginners lessons. And just imagine hearing about life through the eyes of a 13-year old.

What do I do to increase purpose in my life? Oh, I write a blog. I thought you knew! I also walk puppygirls. Bye!

Written August 4, 2018

Lin/Linda here: I am here to share a resource I found for myself when I was looking for courses in my new field.  It’s udemy.com— a school that has reasonably-priced online courses in all kinds of topics from personal development (eg. happiness, religion & spirituality, stress management, memory), lifestyle (eg. beauty & makeup, travel, arts & crafts), Music, Photography, Language and many MANY more! Many of the courses are $10.99 or $11.99, some are more expensive. They are always running sales. They’ll give you your money back if you don’t like a course which happened to me. They are very happy to work with their customers. Check them out, and let us know which courses you are taking.

Next: Where’s Your Hope?

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Do I Rage or Go Gently?

Good morning! Friday morning in State College. Summer Academy Career Day was yesterday and this morning I bus home.

The ride down was delayed. We were in a traffic jam right outside of town for an hour.

The driver was nice. I really did not know what to do about when to load, etc., so I stood right next to him for a few minutes. I felt compelled to explain I am visually impaired and not at all used to buses. I knew not one thing about this stuff. It launched me into a mini, mental pity party for myself.

You know the routine. I was competent and independent and now…not as much. What the hey am I doing riding a bus?!!?

I met a totally blind woman at Summer Academy. When I said I got here by bus, she told me a story of how she cried the only time she ever rode a bus. She was afraid and the people were “nasty.”

We all have our stories. In the end, you pay your money and you take your choice. Participate with all the little indignities or stay home…. Hey, I’m here; aren’t I?

Kids were great as was the staff. Some were wonderfully intelligent and insightful. Somehow I got into a conversation about whether a boy blind from birth would ever choose to see and if I – visually impaired for a couple of years – would want what I have lost restored. My answer was a resounding “yes!” His answer was negative. He sees meaning in his blindness. Deeply religious, he believes he is showing people how one can thrive in adversity by having a relationship with Christ.

Another young man is a running back with a football team. I asked how he, with only light perception, could discern the holes in the other team’s defensive line. He said his teammates yell at him or he just runs into the other line and bounces off. That works too; I guess.

In short, where there is a will, there is a way. The adaptability of the human spirit is amazing.

The kids also did amazing things while they were here, too. They had totally blind kids – no light perception, no nothing – on a climbing wall. They had them on the high ropes and in kayaks. It appears to me they faced fears daily. I cannot imagine being that courageous.

I keep trying to get them to sponsor a camp for us visually impaired “big kids.” As of now, I have not been able to generate a great deal of interest. I would love to be able to go someplace and have all sorts of “adventures” lined up for me.

Last winter I managed to get skiing one time. This summer I have decided to try and add back whitewater rafting. The local college has an outdoor education program and I have signed up for their rafting trip.

I am going to be the only one over about 23 on the trip. I feel weird about it. Preconceived notions and prejudices against age and handicaps are everywhere. Including my own head.

My choices are, once again, simple. To borrow from Dylan Thomas, do I go gently into that good night or do I rage?

What is your choice?

Written August 2nd, 2018

Next: Same Stuff Different Day

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Mailbox or Child?

I spent most of yesterday afternoon trying to be assertive, not aggressive. Fighting the good fight for my rights. Do you ever just get sick and tired of holding people accountable? Why can’t people do things right? Or at least do what they say they will do?

My CCTV that was in the shop for the second time in a month was supposed to have a 24-hour turnaround time. They received it Monday and sent it Friday…after I called and complained.

Then there was some sort of snafu, and I did not get picked up to come home after exercise class Thursday. There is no after hours, emergency number for the transit company. Our home phone was out-of-order, and for a while, I was up the creek without a paddle.

I was on the phone with the county commissioner Friday. Since I am seen by the transit company as not having any power, I borrowed some power from the county. Should get the job done.

All of which is almost enough hassle to make me just “forget” I am visibly impaired and go back to normal life. Like driving myself for example.

It is ALMOST enough. Why? Because if I were to injure or kill anyone when driving, a lot more people than me would be inconvenienced.

Lin said several of the Facebook group members are driving. She urged people to take a good look at their vision – and I would say also a good look at their consciences – and decide whether they should actually be driving. Lin suggested a little “self-test “ she thought up. [Lin/Linda: details on that below.]

I have a few additions to that. These are some questions I thought of when on the “short bus” and then later walking the puppygirls.

Do you actually know what you are looking at? Because I don’t! Many times I can see there is something there, but I have no clue what it is. Suppose it is a mailbox, but I think it is a child standing on the curb. Do I stop and try to let the mailbox cross? (New old joke: why did the mailbox cross the road? Uh….sorry.) How about the other way around? What if that “mailbox” suddenly darts in front of me? Am I prepared? Probably not. I was thinking “mailbox” not “child.”

Can you see things that are not moving? Several times I have not seen flagmen. They were just standing there in my blind spot. Movement catches my eye, but stillness does not.

This week the creek and the river decided to get “up close and personal” in several neighborhoods. (Just missed a serious flood, and thanks for asking). There are signs all over the place. I have to be right on top of them to read them. It takes me a few seconds to actually decipher what it says. And that is walking! If I were driving the speed limit, I could either come to a dead stop and actually read the sign…or drive into the river.

The moral of that last question was this: the familiar changes. Anticipating what was does not always prepare us for what is.

And those are my questions for those who are driving visually impaired. Me? I will continue to fight the good fight with the (fill in the blank) transit company. Being on the side of the angels is preferable to becoming one.

Written July 27th, 2018

Lin/Linda:  my self-test:

  •  While parked, focus on something in front of you. Close one eye. Is everything still there in your visual field? Close the other eye. All OK?
  • While parked, turn to the left & focus on something in your visual field. Close one eye. All OK? Close the other eye. All OK?
  • While parked, turn to the right & focus on something in your visual field. Close one eye. All OK? Close the other eye. All OK?
  • Can you see the controls on your dash? With lessened contract sensitivity, many of you cannot.
  • Also, can you tell when a traffic light changes colors? My Dad who had geographic atrophy could not. He took my mother with him so she could tell him. However, she developed Alzheimer’s and eventually could not do that. He continued to drive. I was 700 miles away or I would have stopped it. He said,”I only drive locally.” Locally was on roads where there were narrow roads with people walking and on bikes. I KNOW he could not see many of them.
  • Can you see the lines on the road?

Next: Commit!

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A Pretty Good Monday

Monday, Monday… Let’s hope it will be all we hoped it would be. (The Mamas and the Papas 1966) . We are going to run errands and going to add a stop at a low vision store in a city not too far away.

I had no idea it even existed until a friend of a friend put me on to it. Network. Network. Network.

Monday afternoon

So far, except for the rain that has me California Dreamin’ (The Mamas and the Papas also 1966), this has been a decent day. We ate at a “nationally-known seafood restaurant” and then went to the low vision place.

The store is pretty small, and they admitted there is a lot more in the MaxiAids catalog. (MaxiAids is a great resource!) What was cool, though, was I got to use the IrisVision goggles for a quick demo.

The IrisVision system combines a Samsung in a virtual reality (VR) headset with a Samsung Galaxy phone to provide magnification at several different distances.

The IrisVision system has a “bubble” that you can use to zoom in on things in the larger view. I had some problems with that because the clock face looked as if it had been imprinted on a beach ball. I liked what the woman I was talking to called the “TV view” much better. The goggles can be focused so you don’t have to deal with your myopia (or whatever) when using them. There is a nice, wide field of view.

Overall, in a very short presentation, I was impressed with the quality of the image and the magnification capacities of the system. I was not thrilled with the weight of the goggles, the battery life (about three hours) or the price.

Not sure they can do anything about the weight right now. They are reported to be working on the battery life and the price. The woman I spoke with said the price for the whole system is $2500. Both she and the website indicated the IrisVision system can be purchased on credit for $100 per month. That is about two years. I heard a rumor they are not charging interest, but I do not have that substantiated. [Lin/Linda: Actually, their website says that payment plans “start at” $81 per month and they DO charge interest: “$80.86/mo. based on a purchase price of $2,500.00 at 10% APR for 36 months. Rates from 10–30% APR.” I personally believe that the prices of this type of visual aid will be coming down now that there’s more demand and more competition. There are more of these headworn devices being developed and they have more features. I personally wouldn’t buy one – yet. ]

The place I went has purchased three or four of them and have loaned them out to clients. There was some sort of grant involved.

Anyway, I gave the woman our card and asked her to see if any of the clients using the IrisVision system would like to write a page. Maybe we will get feedback from someone who has used the thing for more than five minutes….and remember, should any of you want to be a guest author, we would love to hear from you. [Lin/Linda: If you want to check out the current competition, I’ve written some pages–click here.]

And one last thing before I go, being the dog lover I am, I wanted to do a shout-out to Imus, who apparently came from a litter all named after radio personalities, deejays, and shock jocks.

Imus was the reception’s guide dog and, since he was out of harness, I got to love him up. Sweet, sweet dog….and thank you to Guide Dogs of America for making him available to his owner and by extension me.

All in all, glad I “trusted” that day. It was a pretty good Monday, Monday.

Written July 25th, 2018

Next: Gold in Them There Eyeballs

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Commit!

The word for this week appears to be commitment.

First of all, I want to thank all of you for the birthday greetings. Whenever I hear from you people and realize how many people are actually being affected by Lin’s and my efforts here, it makes me proud, humble (moi?) and more committed to keep going until we have cures for this cursed condition. Thanks again.

I also ran into the concept of commitment while reading our assigned chapter for our “free” DBT course. The topic was how to gain a commitment to working in therapy. There is a whole body of research indicating people who express commitment to a task follow through better than those who do not.

Reading that, I realized I make commitments – private and public – all the time. My goals tonight are to review my lesson for class tomorrow and proof a report. My goal for last weekend was to shampoo the carpet. Once I shared that with you people – even if I could have lied to you and never pushed a stick of furniture out-of-the-way, at all – I felt an obligation to honor my word, to honor my commitment. The carpet got done.

Looking for information on commitment, I did find one thing interesting. It was an article by Bruce Rogow entitled The Power of Commitment and Pursuing Your Dreams. Regrow quotes W.H. Murray:

Whatever you can do or dream you can begin it. Boldness has genius, power and magic in it.

Cool quote. Rogow goes on to say, in order to accomplish our goal, we must choose to commit to them. We must pursue relentless action towards our goals.

Rogow then made the statement that interested me the most: expect and have faith you will get help along the way. Intriguing. I don’t know why it would happen, but I know it does. People help me accomplish my goals all of the time. Somehow I get rides. Somehow I get the equipment I need. Somehow we have gotten readers. It is almost like “Field of Dreams.” Build it and they will come.

Like I said, I have no idea why. Maybe it is because attitudes are contagious and people like positive people. Maybe it is because we all have a little Sancho Panza in us, and we want to see the cock-eyed dreamers, Don Quixote’s of the world, triumph. Maybe we all like to cheer for the plucky underdog. Whatever the reason, commit to a goal, pursue it relentlessly and people will come out to help and cheer you along.

Why am I preaching a “sermon” on commitment in an AMD blog? Commitment to a goal is a great source of motivation. Most people, if they say they will, especially publically, by damn they WILL. We can use commitment to move us along to goals. We can use it to help us keep fighting. publically promise to use assistive technology, to go out even when it is easier to stay in, to keep involved and help the researchers find a cure and someone will help you. The next thing you know, your goals will be accomplished.

And to round things out, Rogow had one more thing to do: show sincere gratitude for the help you received…THANK YOU! Thank you for backing our commitment. With your support, our goals can be reached.

Written July 17th, 2018

Next: A Pretty Good Monday

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Dual Diagnosis

I promised myself since I am only working part-time I would awaken my internal, sleeping Domestic Goddess. I would do great things! So far all She has done is roll over in her sleep.

Today I finished the cobweb seek and destroy mission. I took my fluffy thing on a stick – and please notice I use all of the professional terminologies! – and wiped down all of the walls and ceilings. The puppygirls followed closely along – sneezing.

I am working up – or in this case down – to shampooing the living room rug. That is going to take a lot of turning the mind and convincing myself to do it.

Well, stranger things HAVE happened; you know. ?

And while I think about shampooing the carpet, it is time for a page! Hopefully, there is something in the email to save me from myself.

Healio listed the five top articles about retinal disease in June. The first one was about intraocular lenses (IOLs) for those of us who have both AMD and cataracts. In Austria, they are implanting lenses that magnify in those who have had cataract surgery. The bottom of the lens sounds like it is more like a bifocal (my interpretation) while the top takes care of far vision for distance. The lenses provide 1.5 magnification at 25 to 30 centimeters ( read 10 to 12 inches) and 3x magnification at 12 cm to 15 cm. I assume that is 5 to 6 inches.

The researcher, Andreas Borkenstein, said that even though the scotomas (blind spots) are still there, the magnification makes it so they obscure less of the image.

They are finding great improvements in best-corrected distance acuity. People with acuity scores of 20/400 corrected to 20/63. Yippee!!!

Borkenstein stated he wants his colleagues to be able to give dual diagnosis patients (AMD and cataracts) hope. Just because a patient has advanced AMD doctors should not tell them cataract surgery is pointless and will do nothing! …Damn right! You tell them, Andreas! ?

In addition to the acuity improvements, contrast sensitivity and color perception also improved. Another yippee!

Now, having used MaxTV lenses, I can tell you, my depth perception can be way off when I use magnification. My low vision specialist warned me about moving and wearing them. Doesn’t work well. I tried to. (So maybe I am from Missouri?)

Anyway, my point is this: nothing was said about depth perception, driving, etc. in the article. I am thinking the neuroplasticity of the brain is such that it just eventually adapts, and you learn how to do all of those things normally. No going to put a cup on a table and missing the table by a foot! Or going to drop cans in a cart and have them rolling all over the floor like I did. Oops. Anyway, not sure if you can drive – or even walk fast – with these IOLs. Need to do more research on that. Also need to see if they have been approved in the USA, Canada, UK, etc.

But that will have to be another page. Bye!?

Written July 10th, 2018

Next: Orphan Drugs

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Zen Habits

I have been at “loose ends” all day today. Alright, maybe not ALL day but definitely this afternoon. This morning I got a haircut and went grocery shopping. I also went looking for shoes. The puppygirls ate one shoe each from TWO – count them 2! – pairs yesterday, and I was hoping to replace them with similar items. No joy. Nothing looked even vaguely like what I wanted.

I came home and went online. I found one pair that would fit the bill. Sort of. If Amazon does not have it, I don’t think you can get it anywhere. Bless them.

Anyway, trying to figure out why I am so discontent and cranky today. I know I am tired. I did a ten-mile paddle yesterday. That was a bit much. (Being tired is a vulnerability factor for negative emotions; ya know.) I did not get into the study I was interested in. I did not see a single pair of shoes that interested me.

The last two add up to frustration and disappointment. If it looks like a duck and walks like a duck and quacks like a duck, it is probably a duck; right? There is probably a good chance this mood is the result of frustration and disappointment. And overdoing it yesterday.

Well, I am going to “treat” my fatigue to a little “hair of the dog”. I have a ride to hip-hop, and I am going to exercise more by dancing. That is opposite to emotion in DBT speak. If you don’t like your emotion, change it! I am down and dancing always brings me up.

That should work some on the frustration and disappointment, too. The joy I can feel when I dance is opposite to those emotions as well.

What else can I do? Well, Zen Habits suggest a lot of stuff that sounds like what DBT teaches. Not surprising since DBT has roots in Buddhism.

For one thing, have compassion for myself. Frustration and disappointment are part of the human condition, and I – in spite of what some people may think! – am human. I am just participating in humanity. And if I were another human, would I not give him compassion?

Then there is allowing the feelings to be. They are legitimate. Let them play out to the end. Emotions have short lives and unless I retrigger them, they will be here for a while and die a natural death. Being afraid of emotions and avoiding them only causes more problems.

Zen Habits has more but I want to pick out the mindfulness one next. Truly, how much different am I today than I was yesterday? Or this minute from last minute? My health is still good. I have a purpose. There are kind souls who care and take care of me every day. Not getting into the study or finding a pair of blue sandals did not change that. Right now in this instant, I am fine. I am fine in this instant and this one. Etcetera, etcetera…

The last thing they suggest is being curious about what actually IS coming down the road for me. I ordered shoes online. Maybe they will be real “finds.” The perfect shoes for me. I was promised there are other studies coming. Anyone interested in finding out what they are? Maybe one of them will be exactly what I am looking for. You never know.

Next: Dual Diagnosis

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Heat Wave!

To quote Martha Reeves and the Vandellas (paraphrasing),“it’s like a heatwave!” Not sure we are going to do any “Dancing in the Streets” (1964) today. Too dang hot! However, the YouTube video is fun if you were around then. It’s Dick Clark and American Bandstand. It was probably filmed in L.A. since Bandstand left Philly in February that year. However, I still ran home every day after school to watch. Rock on!

But kindly rock on thoughtfully if you are also having a heat wave. Heat waves can be deadly when you reach “a certain age”. Jean Coutu, who I think is Quebecois and probably a guy – his stuff comes up in both French and English, talks about the effects of extreme heat on infants and older folks. He says heat can lead to not only death, but some suffering along the way. The list includes heat edema (swelling), heat rash, heat cramps and heat exhaustion.

Jean goes on to say how certain characteristics of the elderly population – and some even especially in the visually impaired, I would say – can lead to greater risk. Certain medications lower our tolerance for heat. Some of us are physically and socially isolated and many of us have lost autonomy. No scooting to the grocery store to stand in the frozen food aisle! Maybe go to the seasonal section and get a lawn chair….what? Well, it might work.?

Short of camping out in frozen foods, Jean has some suggestions. His list includes drinking a lot. And, no, he is not talking about that kind of drinking! In fact, that kind of drinking is not recommended. Why, because alcohol will dehydrate you even more. If the weather has you so distressed, you really need a good stiff one or three or four, follow each of them up with a large glass of water.

Limit outside activities. I was supposed to have yoga in the park tomorrow evening. My yogini canceled because it is supposed to be high 90s F. Even “up dog, down dog” is not a good idea in that kind of heat.

Jean says air conditioning. Wonderful, but I have sweltered in Italy with no AC in the rooms, so I kinda know about the paucity of air conditioning in Europe, not to mention many private homes here. Off to Lifehacker for 10 ideas about staying cool without AC!

Lifehacker agrees about lots of water. They also suggest popsicles and crushed ice to suck on. May I have the cherry popsicles? That has always been my favorite. Some come in plastic bags so you don’t have to keep them in the freezer all of the time. Stock up!

How about building a fan fortress? If you have a basement, put the fan at the top of the stairs to draw the cool air up. Put the one upstairs so it pushes the hot air out.

Or how about building an air conditioner? Put a bucket of ice water behind your fan.

Take several hand towels and soak them. Then put them in the refrigerator. Take them out as you need them. Hang one over your head. Who cares if you look silly? It is HOT!

The article has several more suggestions but you get the idea. I have to get a little something to eat, and by that time it will time for the puppygirls afternoon swimmy. Such a life.?

written July 2nd, 2018

Next: coming soon!

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When the Going Gets Tough…

It seems we live for the challenge. As if my visual problems and my husband’s health problems are not enough, we just seem to ATTRACT things.

Man vs Wild, with Wild being the Maggie Monster, continues. She clears a 4’ fence (in a leap with a little boost at the end, hind feet in the chain link), so we put up a six-foot fence. She goes under a fence; we anchor it. She has now started crawling under the deck to get out. The girl is a wonder. It would not be so bad, but she gets herself into the pool, comes out and uses the furniture as her towel!

In addition to the Maggie Monster games, I have been dealing with the business office at school – can you spell SNAFU? – and trying to get fingerprinted (or not) for the mini, mini continuing education class I am teaching in the fall. Everything turns into an event!

So, life is just one, big challenge. When we don’t have any, we seem to attract them. Probably the way we live our lives. We wanted the puppygirls. I want to teach my mini, mini course on AMD.

There are essentially two ways to look at challenges. Either you consider it all an incredible pain in the tush or…game on!

The Huffington Post wrote about ten reasons to love the obstacles that show up in life. Quoting Ryan Holliday, the Huffington article suggests we succeed not in spite of obstacles but because of them.

Obstacles show us who we are, for example. Have you made a decision on how you will handle the obstacle of vision loss? What do you think about that? Can you, as who you are, live with that decision? Maybe it is not “you” at all.

Obstacles show us what we need to do next. What do we need to work on? We continue working on keeping the puppygirls enclosed and safe. Maybe you need to work on finding transportation or finding a low vision specialist to teach you skills. What do you need to do to get over the hurdle?

Holliday says obstacles make us tough. When the going gets tough, the tough get going.

I found this one intriguing. Number 8 on the list is “obstacles allow us to change our lives for the better” and the first line in it says“sometimes they are an excuse for changing our lives”.

Hate your old job? Maybe this is an opportunity to get training for a new one. Very often Blindness and Visual Services can help you switch careers. What do you REALLY want to be when you grow up? If it is reasonable for a VIP, there is a chance you can do it still.

And then there is the ever famous “I want to see the world before I go blind!”. Sounds like a great excuse for jetting off to me!

Those are just a few of the 10 reasons they listed. Check out the article for the rest. Hope this little “reframe” of obstacles into challenges was helpful!

PS The puppygirls have now pushed out the sliding side of the air conditioner and gone out the window! Maggie went next door and forced her way under the fence of the neighbor’s dog yard. This is the first time I have ever had a dog that broke IN somewhere!

Game on!??

Written July 1st, 2018

Next: In the Pipeline for Wet AMD

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Stories to Tell

I am ready for a little break on my trip down memory lane. Last evening I sent a thank you card to school and a condolence card to my childhood friend. Her father died. It would appear we are now the keepers of the keys, the keepers of the memories. How strange.

Then back to the basement for two hours! I found the sake cup Daddy brought back from the Pacific Theatre. Put clear liquid in it, and a beautiful girl appears at the bottom. Would you like a 1960’s pamphlet on building a bomb shelter? How about a Patty Playpal? She doesn’t have any arms now, but I have them in the next box. I am sure someone will be able to fix her.

So, yeah, I save ‘stuff’. Lots of good memories. I am fortunate. Remember reminiscing on good things in life can remind us we have a lot to build and draw upon when things are not great.

But hanging out in the basement and looking at the detritus of my youth is not the way I want to spend the next 30 years. (Didn’t know I intend to hang around until 95; did you?) It is time for a few new memories. New experiences are called for!

Huffington Post in a 2017 article by Larry Alton says a good reason to try new experiences is to help you get over the fear. Facing fears now is helpful. Even if you were not exaggerating the negative as we often do, facing fears lets us see how brave we can be. Might come in handy when it’s time for that eye shot.

Alton also says we need new experiences because it helps us know ourselves. It also stimulates our creativity. Lots of reasons.

And don’t think it all has to be some great, meaningful thing! How about engaging in some good, old-fashion play! Play, and especially something you don’t normally do, will improve your memory and thinking skills. It will also improve your emotional and social well-being.

What to do…what to do? GreatSeniorLiving printed a list of fun and activities for seniors. Some of the things they suggest are pickleball and frisbee tossing. Our Y has pickleball and there is a frisbee course in the park. I have never done either one.

Looking for something a little less active? They suggest fingerpainting and working with clay. When was the last time you played with play-doh? I cannot remember the last time but when I think of play-doh, the emotion is positive. Must have been fun!

And then there is storytelling. Which story should you tell? Your own, of course! I worked with a woman who was part of the Vietnam babylift in 1975. When she told her story to the kids at school, you could hear a pin drop. They were riveted. My guess is you have a story you could tell as well. Or maybe the story of someone not able to tell his story anymore.

…I found a picture of my father and my uncle in their Army uniforms. My uncle was wounded in the Battle of the Bulge. He was separated from his unit in the Ardennes forest…..

Written June 23rd, 2018

Next: Keeping Our Eyes Open

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Priorities

Here I am on my second, not-working Tuesday. I got a little concerned with myself yesterday. OK, so yes, I did good things. My friend got me on the river to kayak and I got into the pool with the puppygirls. Trying to teach Etta not to jump on heads and drown every other living thing also trying to swim! In the evening I went to hip-hop. LOVE to dance!

The problem was I could count the ‘productive’ stuff I did on one hand. And, yes, I like to be able to say I have accomplished something in a day. And, yes, I am more than a little neurotic about it, but curse it, I had plans to get things DONE this summer!

This morning I got up and started on the basement. Our basement is scary. There is stuff from the old place we lived 17 years ago. There is stuff from my parents’ home and my husband’s parents’ home. We threw it in the basement until we got around to it. Apparently, today is “around to it”.

I worked for three hours. My husband has a pile as high as my waist to pass judgment on. There is a lot more to be done.

My problem becomes now how to get back to it. I am not used to doing my own time management. I suspect those of you who have had to pull back from jobs, etc, due to your vision loss (or whatever reason) might have the same problem. What do I do to make sure all this spare time is spent well?

Back to Wikipedia!

Wikipedia defines time management as “the process of planning and exercising conscious control of time spent on specific activities especially to increase effectiveness, efficiency or productivity.” Sounds good. How do we accomplish that?

Here we go. Set an environment conducive to effectiveness. Prioritize and following through. Don’t spend a lot of time on non-priorities. Use incentives with yourself.

Wikipedia goes on to say we need to triage our work. What is important and needs to get done? Then we need to protect our time by insulating, isolating and delegating. There needs to be an emphasis on motivation and movement away from bad habits like procrastination.

In other words, I probably should not be writing this page right now. My priority should be looking over my lesson plan for tomorrow. Triage. I should put this tablet out of sight while I am reviewing my notes. I should remind myself my motivation is high because I don’t want to look like a dunce tomorrow. I should move away from saying it can be done AFTER my swim….uh, wait a minute.

They also talk about gravitational goals. Gravitational goals have a lot of ‘pull’ and just seem to flow along one after the other. For example, it is a beautiful, sunny day. The pool is blue. The puppygirls want to swim and will then nap, allowing me some undisturbed time.

Sounds like enough pull to me! Caio!

Written June 19th, 2018

Next: Vision 20/20

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Vision 20/20

Good morning! This domestic goddess business has got to end. I have been cook and pool girl as well as laundress and puppy lifeguard not to mention dishwasher and sweeper person already this morning. Give me a simple day at the office!

First of all, Lin sent me the stats for the website. We owe all of you a HUGE debt of gratitude. Thank you! Our stats are wonderful and that is only because you are so fantastic. Thank you for your loyal support!

Honestly put, we are looking forward to the day you would never EVER want to read these pages. We are looking forward to the day we can close up shop and never write another page. The reason is this: that will be the day there is a CURE for AMD. Not here yet, but strides are being made.

Bringing me to a couple of related things I want to touch upon. Remember Vision 20/20: The Right To Sight? We are just about 18 months from their target date. Their goal is to eradicate preventable blindness in the world.

Back in 2004 JAMA Ophthalmology ran a lengthy article about the state of vision in the world. At the time there were 45 million blind in the world and 80% had been blinded by diseases or conditions that were either curable or preventable. Even worse, unless something was done and done quickly, they were projecting 76 million blind by 2020. Yikes!

Anything happening? Oh, yeah…according to Healio, the FDA has recently approved a treatment for river blindness. Although I don’t think I had ever heard of it before, I would suspect it strikes terror in the hearts of mothers in sub-Saharan Africa, Yemen, and South and Central America. Let your kids play in the river and they may come home with a parasite that will make them blind. The World Health Organization has identified river blindness as the second leading infectious cause of blindness in the world. Pretty good to finally have something that will treat that.

Then there are the cataract initiatives all over the world. Recently the director of Khmer Sight Foundation spoke on the strides they have made fighting cataracts in Cambodia. Good efforts there.

You want impressive? Try the Himalayan Cataract Project. A piece on CBS News last year sang their praises. Rightfully so. The Himalayan Cataract Project had at that time restored sight to more than four million people in 24 countries. That wasn’t just the work of founders Ruit and Tabin, of course. Together they had ‘only’ restored sight to 150,000. They trained a few folks along the line.

I will be anxious to see what the World Health Organization presents in 2020. I have a feeling it is going to be big.

Keep the faith. Progress is being made on all fronts. It is amazing. Want proof? Watch the 60 Minutes video when the Nepali woman sees for the first time in decades. Amazing.

Written June 17th, 2018

Next: Focus

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My New Luggage

Hi. Waiting for transportation. What else is new?

I sent Lin a photo of my ‘luggage’ today. This is a joke. I am taking two rolling crates to work. The loaner CCTV has two parts. It has a base and it has a monitor. It is HUGE.

Yes, I am glad I have it. Practicing gratitude and mentally comparing what could be my next month without a CCTV to what it will be with the loaner machine. This is better.

DBT says clients are doing the best they can, but they can do better. Right now I am doing the best I can. Making due with this behemoth of a CCTV. However, it is possible I could do better. I am on the trail of another option. Someone said there are loaners through the library.  If I can get one of those for home and have this one for the office, I will have it made in the shade!

Stay tuned for the next update…and try your local library for equipment loans. They might be able to help.

Later in the evening:

I just sent Lin a picture of the fantastic loaner I got from the library! It is a Freedom Scientific machine and it is very nice. It is a Topaz. When I looked it up on the website I discovered it is  $3400 machine.

And I got it on my library card.

OK. So I also made a donation out of gratitude. Nowhere near the cost of the machine.

When I went in and asked, they had to dig it out from behind some shelving. There were two of them and I took the one closest to me. The better to get it out, my dear.

The library people said they had never used them. Did not know how to use them. They were just taking up space. The solution to my problem gathering dust in a corner.

And how did I get it? I asked.

Having this second CCTV means I can have one at home and one at the office. I will be able to do minimal lugging. I won’t be totally stressed wondering when my CCTV is coming back.

I am thrilled. And all I did was ask.

What else is happening? Well, Lin shared a podcast with me. The name of it is Life After Sight Loss. The narrator – perky little devil! – is a guy named Derek Daniel.

Now I really did not have time to listen to much. I was getting ready for work. There are many podcasts on a variety of low vision/no vision subjects that are included on the site. The site seems to be one you might want to check out.

According to his bio Daniel has been totally blind for some time.  He has Leber Hereditary Optic Neuropathy. (Gene therapy for LHON, by the way, is looking very promising). Daniel appears to have radically accepted his blindness and to have taken part in many different trainings as well as using many technological supports. In other words, he has paid his dues and probably knows what he is talking about.

You might want to check out lifeaftersightloss.com and see what you think. And if you have a CCTV on the blink, check out the public library. It is amazing what you might check out on a library card!

Written June 13th, 2018

Next: Glad They’re On Our Side

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Forewarned is Forearmed

Back on my stride again. This is my third day at the counseling center so I am in my groove for a few days.

Making plans for Monday and Tuesday. There is a lot to do around the house. If it weren’t housework, I might want to do it!

One of the plans I have for Monday is to accept delivery of a loaner CCTV. Blindness and Visual Services comes through again! God bless them. It might not be new. It is not portable but I can work.

My case manager and I talked about how much low vision equipment must be in storage in homes across the country, maybe even the world. It would be really great if when the equipment is not needed anymore, it would be turned in to local visual services. Knowing there was a convenient lend/lease program would have saved me aggravation.

The real message there? Help others by sharing old but still usable equipment. Turn it in to your local, low vision agency. The price of this stuff is crazy. I think that and I make a good living. For a lot of VIPs (Visually Impaired People) low vision equipment is financially way out of reach. Help!

The second part of the real message is this: don’t suffer in silence. Equipment glitch? Someone might be able to help. Keep looking until you find him.

Of course, one of the reasons people don’t need vision equipment is…ummmm, death. I was looking at some of the articles on AMD on nature.com. There was about 10% of them I actually understood. And that was the titles! Lots of really smart and accomplished people are working on our problem.

Be that as it may, some people in Melbourne (hey, mates!) ran some stats on AMD and mortality. Unfortunately, they discovered we die sooner than those with normal vision. Wet AMD is associated with death from cardiovascular problems and advanced dry AMD is associated with death from tobacco-related cancers.

These are not happy thoughts but I would say forewarned is forearmed. In other words, I have never smoked, and I am not planning on starting. If you have geographic atrophy and smoke, try to quit.

You with wet AMD should recognize you are candidates for cardiovascular disease. Do what is necessary to lower your risk. You know the drill.

The researchers cited by nature.com not only have us dying faster, they also have us potentially losing cognitive skill more quickly. Will the good news never end?

The theory is cognitive enhancing activities are much harder for people who cannot see. We as a group were found to engage in four or five fewer, cognitive enhancing activities per month as compared to sighted seniors. The most affected area was physical activities followed by hobbies and home maintenance. We also came out behind in novel information processing.

While they are not saying it is an absolute certainty we will have a greater cognitive decline, I would not suggest you take any chances. Find engaging activities you can do. Get into visual rehabilitation.

You can affect your own future. Get going!

Written June 10th, 2018

Next: Go Out and Play!

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Pushing the Envelope

Happy Monday! Trying to “earn my keep” on my first “non-school” day. The recycling has been taken to the center and the extra fridge has been cleaned.

The ‘extra’ fridge is actually our old one. After we bought the new one, we found out it was only a $50 repair. Voila! Two refrigerators.

I also took delivery of my loaner CCTV. Transporting this thing should be interesting but there is something about not looking a gift horse in the mouth. People do not have to be as kind to me as they are. Gratitude is in order. Thank you!

Found an interesting thing when I was looking at the Brightfocus spring newsletter. They have this eyechat thing. They have eyechats the last Wednesday of the month. It is 1:00 pm. Eastern standard time, I think. I forgot to ask. [Lin/Linda: their eyechat feature is a free telephone conference that is done live where you can listen and ask questions of the guest.  And yes, it is 1:00 pm Eastern Time.]

Anyway, the number to sign up for the live chat is 800-437-2423. If that does not work for you, you can call 800-250-7274 and listen to past chats. Want that on your iPad? Try brightfocus.org/pastchats.

Umm, maybe not that easy. That address took me to their chat page. I had to scroll down to the bottom of the page and click on “listen to previous chats”. THAT gave me the chat menu. You might want to try that. [It’s a little easier on my laptop. Also, you can sign up for their newsletter on many, if not all, of their webpages.]

They have audio and PDF file with the transcript. Audio is taking forever to download. Might be my system. Might not. [Again, faster and easier with my laptop.]

Also in that edition was a follow-up on gut microbes. It has been said our guts are our second brains. It has also been said the state of your gut determines the state of your health. According to Exploring gut microbes in human health and disease: pushing the envelope, there is a good chance such disorders as irritable bowel disease, cancer, diabetes, autism, asthma, and obesity (I am not fat. My gut microbes just don’t like me!??) may be due to imbalances in the gut.

Apparently, we might have to add AMD to that list. Remember we talked about this last fall? Rowan at Tufts is looking at how gut microbes interact with our high sugar and starch diets. He has now added an extra wrinkle. He is killing off gut microbes in mice and switching samples between mice fed high and low sugar diets. Trying to figure out if the culprit is the sugary diet or the microbes.

And speaking of pushing the envelope, how they get new gut microbes into people is definitely pushing things to the limit! Before I said I wanted them to change my microbes so I would not have to change my diet. Rethinking that.

I changed my mind after watching a Nova program, Wonders: what is living in you? This woman had a serious digestive problem after a course of antibiotics. The only way they could solve it was giving her poop pills! There are these people with great gut microbes who come in almost daily. They get paid for making a ‘deposit’ which is turned into poop pills! Yuck.

Could be worse. Supposedly in fourth-century China they made “yellow soup” out of poop. I don’t want to think about it but, you know, those leafy, green vegetables are looking better and better.

Later! ?

Written June 11th, 2019

Next: Lookout

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Go Out and Play!

I do not do well with downtime. Consequently, today saw me doing a little work for work, a bit of simple cooking (gasp! I also ate my own cooking and lived to tell about it. Go figure.?), some digging for things to give to the yard sale, laundry, dishes…..get me out of here!!!!

I need a sunny day to get out and DO something. Last year – or was it the year before? No matter – I wrote some about all the really fun things you can still do with visual impairment. My top two loves are dancing and yoga. I also kayak, swim, walk the dogs and bike in summer.

Three years after losing my first eye and 2 ½ years after losing central vision in my second eye, I can still do the things I love. Go into this visually impaired thing in good shape and there is no reason you cannot maintain an active lifestyle. Go into it in bad shape and life changes with visual impairment may give you time to get into better shape. It is up to you.

Not only do you get in better shape, you also keep an active mind and make all sorts of friends, or at least very positive contacts with acquaintances. Case in point: my yogini is having an evening session in the park in a few days. Since my transportation turns back into a pumpkin in the evening, I told her I would be there if I could find a way home. A woman I know only slightly spoke up and volunteered to take me home. Consequently, I am doing outside yoga!!! ?

Don’t like yoga? Two left feet when you dance? (But remember how Pacino tangoes in Scent of a Woman? That was one, ‘blind’ man who could dance.) Would you like to row a boat? That is backward anyway. Or how about bowling?

According to VisionAware there are enough blind and visually handicapped bowlers, they have their own national organization, the American Blind Bowlers Association. They bowl either using a sighted guide or a guide rail. The guide rail is the only adaption to the lane. There are no bumpers like you may have used when you were small. Balls may be bright colors to add contrast. Callers let you know about that nasty split you have to pick up for the spare.

How about golf? The United States Blind Golfers Association has a catchy motto: “You don’t have to see it to tee it”. Cute, huh? Sighted coaches are used to help the visually impaired golfer line up his shots. There are different categories depending upon the degree of sight loss.

Not ready for the tournament circuit? How about mini golf? Mark Riccobono wrote a nice article about introducing visually impaired children to the sport. He has several good pointers that should apply to everyone.

Other suggestions? Horseback riding. How about hula hooping? I have a weighed one – hula hoop, not a horse – that stays up much more easily than those we played with as kids.

To summarize, if you are used to an active lifestyle, there is no reason you cannot continue it with a visual impairment. To quote your mother “Now go out and play!”

Written June 10th, 2018

Next: Lights Please!

HOme

You Don’t Look Blind

The words for the week are validation and invalidating. Either those words or situations exemplifying those words have cropped up all week.

The online dictionary gives the third definition of validation as “the recognition or affirmation that a person or their feelings or opinions are valid or worthwhile”. In DBT an invalidating environment is believed to help to cause borderline personality disorder. An invalidating environment will punish or trivialize the expression of personal experience.

Invalidating environments were a big topic at the training we did as well as being a big topic in our assigned reading. Then, this week, when I was feeling awful about leaving my school job, everyone kept saying how “wonderful!” it was to be retiring. Nobody ‘got’ me. Every remark invalidated my private experience. Some people even told me how “crazy” I was not to be overwhelmed with joy!

Trust me; these are all kind people. They were not trying to give me mental health problems. (They have been doing that for the past 40 years! Oops! I did not say that.) They were just projecting their desires on to me. Either that or they did not know what to say.

All of this got me thinking about the invalidation we experience with vision loss. How many people have told you it is not that bad? Then there is my all-time favorite: “you don’t look blind!” Write in and share your favorite invalidating remark.

Jamie Long wrote The Power of Invalidation: 5 Things Not to Say. I recognize a number of them as things I say or have had said to me. How about “it could be worse.”? Then there are the twins, “ I am sorry that” and “you should not”. They are members of the “Feel-that- way” family. Long also reviews “Don’t think about it. Just move on” as well as “ I am not having this conversation!”

So how to be validating? Long has a short list of suggestions for that. She states that validation does not mean agreement. Emotions are different from behaviors. You can recognize a feeling without agreeing with a behavior.

Long also suggests we not become defensive, or at least try. This is not only if you are the person receiving the invalidation but also the person delivering the invalidation. Like I said, people react from their own feelings and realities. They may not match yours. They might also be at a loss as to what to say.

And if you step in it with what you thought was a supportive remark? Accept at least a part of the blame for things going off the rails. Long also suggests reflecting the feelings or even summarizing the experience. Heavy on the feelings involved, that is.

Last but not least, there are some situations we just can’t fix. Muddling around and making some inane comments in hopes of making things better doesn’t work. Better to just listen. And if the inane, ‘helpful’ comments are aimed at you, cut the other guy a break and actually tell him you don’t expect him to fix it. Ask him just to listen.

So those are our (or at least my) vocabulary words for the week. Quiz next week! Class dismissed!✌?

Written June 8th, 2018

Next: Why Drop Out?

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Patience…or Not

Done. Had it. Not a good day.

Now I know Lin will gently (or not!) chastise me for this, but I absolutely hate all of the nonsense that came with leaving my school job today. Let me quietly walk out the door just like I have done hundreds of times before. Fanfare not required…I should have been so lucky. And no, I don’t think a picture of me with the cake is appropriate for the district website! Jeez. [Lin/Linda: I’ll comment gently about her last day at the end of the page. Don’t want to interrupt her story.]

Then I tried to charge my phone and it did not charge. I don’t know about you guys’ or you girls’ husbands but my husband does not consider a broken cell phone a disaster. He considers it a blessing….and he is my transportation to the phone store!!!

I have been trying to train myself to be patient ever since I lost my central vision and ability to drive. I keep reminding myself I now need to consider the priorities of others. My husband sees no value in technology and definitely feels I should not need to be in 24-hour contact with the world. It is understandable he would not see the crisis in a broken cell phone. I should honor his decision not to jump up and run me to the phone store on demand. I should be patient. Yeah, right. I am obsessing even as we “speak”.

Then I caught Maggie red-pawed dumping the trash can. Enuf said.

Then, I got an email from my CCTV company. Once again I have a mechanical problem with my machine. This time, however, things are not going smoothly. The company no longer provides loaners. Diagnosis, ordering parts and getting my machine fixed will possibly take a month.

A MONTH?!?!? Excuse me. A month, you said? Why, oh my goodness?, dear, exactly how will I function for a month?

So, once again I am on a quest. There has to be another way to get a simple repair. And barring getting a simple repair, there has to be a way to get another CCTV for that month.

I am going to start by going right to the top! I found the number for the National Federation of the Blind. Tomorrow morning I am going to call and ask if they have any ideas. Somewhere there has to be equipment to rent for just this sort of emergency. There has to be something available.

I tried calling this evening but apparently, NFB offices keep sane hours. They were not open for the crazy lady who wanted to solve at least one of her issues, like, right now!

Have you ever called NFB? The nice recorded lady says something like…”It is not blindness that is holding you back”. Great sentiment, but I wanted to scream something about what is holding me back is no one wanting to do things my way! Probably not appropriate; huh? Thought not.

So, yeah, it was not a good day. I am cranky and irritable and emotional drained. Would it be too much to ask to have just one thing today be done my way? Yep. Kinda thought that. Better luck tomorrow.

PS Do any of you lovely people have an answer to the CCTV repairs dilemma? I keep thinking there has to be a better solution. Thanks!

Written June 6th, 2018

[Lin/Linda: Okay, I’m here with what I told Sue about the retirement festivities. What she above calls ‘nonsense’ is tradition, a rite of passage, for all gathered together, not just for her. It’s a way of acknowledging the retiree’s worth to the group. It’s also something that many people look forward to for themselves when the time comes. Bottom line: sometimes we have to put up with ‘nonsense’ to make other people happy.  Was that gentle enough? ::grin::]

Next: You Don’t Look Blind

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