Optimistic for 2018

TGIF. Thank God it’s Friday! Not that the weekend is going to give me much reprieve. I have exercise classes on Saturday and a party on Sunday not to mention puppy parenthood, housework and several reports to write.

There is no rest for the wicked. Not that I have been exactly lax. This just seems to be a life with a lot to do…and I like it. I like it!

Nice to see in Newsweek and the Daily Mail that being busy and stubborn lead to longevity. Those of us with a strong work ethic, pure cussiness and a need to be in charge seem to take the years a little more easily.

There is certainly going to be a lot to do this year. In 2018 I turn 65 and need to navigate Medicare and some sort of other insurance for my cradle-robbed husband. My calculations indicate I am losing over $6,000 a year by still working at the school. My pension would pay a lot more. That and my ever failing eyesight suggest retirement from there and working full-time at the psychology practice may be the way to go. I still have some things to check out so we will see. Keep you posted.

We have a big project coming up at the office. We get to be involved in a statewide training for DBT this Spring. I have several ideas about what I want to do with that. I have discovered I really like to teach and I believe DBT is needed by our younger folks. I would love to introduce DBT in the schools.

Like I said, lots to do and I am optimistic about my opportunities. And that includes my opportunities for my vision.

Did you see Luxterna gene therapy is now on the market? Luxterna is $850,000 for a treatment! That is a hell of a lot of bake sales but I would expect many if not most communities would work to buy vision for some little guy or girl.

Remember Luxerna works by modifying the gene RPE65. RPE65 ‘recharges’ chemicals in the retinal pigment epithelial cells so they can still participate in the visual cycle. If they can reprogram RPEs to do that, how much longer before they can modify them for our diseases?

I have it on pretty good authority the APL-2 studies launch again this calendar year. That’s exciting. What is also exciting is I believe the Astellas Pharma stem cell trials will get going this year as well.

Progress is being made. Lin shared a recent article on how they are increasing the success rate for transplanted RPE stem cells.  Optimally RPE cells are to line up and form a single, functional layer of cells only one cell thick. This is everyone nose to tail, all facing in the same direction.

In order to do this the RPEs have to have well-developed primary cilia on them. Primary cilia are little, hairlike things that generally serve as the sense organs of the cell. Lab grown stem cells often don’t have the best cilia on them. When they line up, things can get a little wonky.

Kapil Bharti and the folks at the National Institute of Health have discovered a drug that helps RPE cells grow beautiful cilia. Beautiful cilia cause the RPEs to line up in pretty lines and the results of the transplant are more successful. Ta da!

So, optimistic about 2018? Oh, yeah. You just gotta believe. Every small step is progress. Once again: this is the best time in history to be going blind.

Best wishes for 2018.

Written January 5, 2018 Continue reading “Optimistic for 2018”

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Cruisin’

Saturday. I think I am packed except for toiletries. I guess I’m good. Find out once we get on the ship.

I have not done as much research for this trip as I have done for other trips. We planned it fairly quickly. Wanted to get it in before we got a puppy.

I will let you know how it all goes. I just looked up Best Ships for Cruisers with Disabilities. They reviewed the big ones: Royal Caribbean, Celebrity, Disney, Holland America and Princess.

While most cruise lines are pretty good with physical impairments, visual impairment only got about one line of text in each case. Each of them offers Braille on some signs and audio books in the library. Most offer large print menus in the restaurant. In other words, in my not-so-humble opinion, they don’t put themselves out too much. (After all, do they even make elevators without Braille anymore?)

If you have a guide dog, he can also cruise. However, be careful which cruise line you choose. According to Do Cruise Ships Cater to Blindness?, Royal Caribbean will not let your dog off the ship! He has to stay aboard at all ports of call. Holland America has the same rule. Several others allow service animal to disembark as long as they have all their proper papers. Of course, finding out what exactly the proper documentation is your responsibility.

Princess has computers set up with JAWS and Holland America has a similar set-up called Window Eyes. That means you can search the web in their internet cafes and the computers will read it all to you.

Royal Caribbean provided sign language interpretation for the deaf. They also provide orientation tours for the visually impaired. However it appears none of them will provide anything in the way of orientation and mobility for the visually Impaired much beyond that initial guided walk around the ship.

In fact, the “Cater” article outright says some cruise lines strongly suggest, depending upon your level of impairment, you not cruise without a caregiver or, at minimum, a sighted companion. Although I would not want to cruise solo, that can put a definite crimp in some people’s style!

That said, there are ways to travel with disabilities, including visual impairment and blindness, and even if you don’t have a ready travel companion. Organizations like Access-Able and Mind’s Eye Travel come up in searches. While I have never used services from either agency, the owner of Mind’s Eye and at least one of her sighted guides were a year behind me in high school. I can vouch for the women so I am pretty sure I can also vouch for their program and services.

So, no, it may not be as easy as picking up your wallet and passport and going out the door, headed for parts unknown. (Although when I looked up ‘blind travel’ I discovered there are companies that will plan everything right down to choosing your destination. They don’t tell you where you are going until you get there!) However it is possible to travel when you are visually impaired. First leg of my trip is in about six hours.

Written October 29th, 2017

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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”

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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”

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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!”

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Keep On Learning

Hey, there! How many people saw the total eclipse? I am soooo jealous!

Pennsylvania was nowhere near where I ‘should’ have been but one of the teachers bought a couple of dozen pairs of glasses and handed them out. We got to see ‘something’.

However, I understand being able to see totality is AMAZING. Hopefully I will see it before I die…or go blind, or run out of money, or whatever.

One more thing for the bucket list.  To use another old saying, my eyes have always been bigger than my belly when it comes to cool experiences. The list never gets smaller.

Looking around at the people who stood outside and passed around a couple of pairs of eclipse glasses, I realized I was looking at the intellectually curious among us. Intellectual curiosity is a desire to KNOW. It is a good trait because it leads to growth. Huffington Post says intellectual curiosity correlates with happiness. We should all be intellectually curious, happy people!

There are articles about fostering intellectual curiosity in visually impaired kids. After all, they cannot see the glories of the world and be enticed. We want them to want to learn and explore.

I could not find much of anything on fostering learning and intellectual curiosity in the visually impaired elderly. What I did find was reference after reference to the Institute for Learning in Retirement (ILR) and Road Scholar.

They sound rather interesting. ILR seem to be located on a number of university campuses – of course, not here! I need to talk to someone about all these gaps – but a lot of the biggies, like Harvard and MIT, and even some of the not so biggies, like Slippery Rock University of Pennsylvania. Their programs cover a wide range of subjects and are for a fee.

Road Scholar is just what it sounds like. (Unless you thought it was studying maps and/or pavement, in which case you have a very interesting mind!) They take educational trips. This is obviously a for fee program.

I know nothing about either of these. Just offering them up as things to explore if you are interested in furthering your education for fun and/or profit.

Come October my friend has me taking a four evening, continuing education class on the first – which number was Calvin Coolidge? – 30 presidents. Nothing I would have chosen on my own, but it is four evenings out and I might learn something. Like Coolidge was the 30th president! Never say we are not educational.

The point of the previous paragraph being this: local educational institutions in your area may also have continuing education courses for a small fee.

Even a small fee not in the budget? This may be my find for the day: Open Culture. We are talking free, gratis, no charge.  They advertise 1,250 online courses plus audiobooks, movies AND language lessons. You want to learn how to find the restroom in Mali or Ethiopia? This site will tell you what to say. Very cool.

One more way to keep us all engaged in life in spite of our visual impairment. Be curious. Explore whenever and wherever you can. Who knows? Someday you too may be able to ask for the restroom in ten different languages. What? May be an important skill, ya know?

written August 22, 2017

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Managing Medications

Never really thought about it in quite this way, but VisionAware has a series of ‘getting started as a visually impaired person’ posts. Sort of like a starter kit for a hobby. Instead of scrapbooking or constructing terrariums, we get visual impairment. “Oh, yes, did I tell you? I’m taking up visual impairment. This book says that in just six easy lessons ($19.99 each) I can have the start of a very promising visually impaired person. And the book says I can do this at home in my spare time!”

Uh, yeah. Really did not need another hobby…especially THIS one.

That is not to say, however, that a ‘how to’ series for vision loss newbies is not a fine idea. It is such a fine idea I am going to borrow shamelessly from them in writing this, and perhaps another page.

The page I am borrowing from is entitled Products and Devices to Help You Identify Your Medications. In that article they cover all sorts of clever ideas for trying to make sure we don’t poison ourselves. I vote for that!

Some of the suggestions in their article are as simple and low tech as keeping a black tray in the bathroom so you can have contrast to see your pills. Others are more high tech. The one I am going to focus on is a high tech option: audio description.

The VisionAware article mentions several different options for audio description devices to use with your medications. There is one manufactured by AccessaMed and there is another one called Talking Rx. But the one I want to talk about is ScripTalk. Why? Can’t write about everything in 500 words.

According to a disabilities lawyer (lflegal.com), many pharmacies are now offering talking labels and label readers for medication bottles. The lawyer’s website gives kudos to a number of chains. (We will ignore the thinly veiled attempt to drum up litigation business.)

I will get back to offering some chain names in a minute but first let’s talk about how this works. Apparently your pharmacist reads the label information into a device that digitizes the information and puts it on a little label that he attaches to the bottle. When you get it home, you have a reader that will allow you to hear what the pharmacist said.

Now, ScripTalk is offered through CVS, HEB, Walmart and Humana. It is a free service to satisfy the requirements of ADA. Of those four corporations, however, the article lists only the customer service numbers for CVS and WalMart. Got a pen? The CVS number is 800-746-7287. The Walmart mail-order pharmacy number is 1-888-237-3403.

Just because you are not in the States and subject to the ADA, does not mean you cannot get medicine bottle labels that talk to you. I have it on pretty good authority (the Vancouver Sun online from 10/07/2016) Shoppers Drug Mart was sued under Canadian accessibility laws and now offers ScripTalk, and free use of a ScripTalk reader.

In the United Kingdom Boots started offering talking medicine labels in 2006. (My, but the Colonies are Johnny-come-latelies on this!) Not exactly sure what is happening on this issue in Australia. Most of what I found there was about a general relabeling of all pharmaceuticals. Anyone know?

Call your pharmacy and see what they offer in the way of audio description labels and readers for your medications. If they have nothing it might be good to remind them this is an accessibility issue. Nothing then? I heard of this disability rights attorney….?

Have a great evening. Don’t accidental poison yourself.

Written August 11th, 2017

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