Broken China

Hello, there! I woke up at 3:30 last night with rotator cuff tendonitis pain. While the over the counter nighttime pain reliever got rid of the pain, it may have worked a little too well. I woke up at 9:30 to the remnants of a puppy party!

Crawling on the floor picking up pieces of whatever they had chewed, I discovered the knobs on the drawer in my father’s gun cabinet had been pretty thoroughly gnawed.

If I were fully sighted, would I have noticed it before this? Not sure, but my guess would be yes.

Putting away dishes a little later, I had several, small bowls leap out of the cupboard and hit the counter with a resounding crash. Thoroughly scared Maggie. Although she is the rowdy pup she is also the more sensitive one.

Of course I did not have shoes on again. Dealing with shards of white bowls on a light-colored floor, I had to call my husband for help. Why can’t any of my ‘disasters’ happen with good contrast!?!

If you have not been following along I want to mention this is the second time I have been standing in the middle of a mess of broken kitchenware. Sans shoes, of course. If Lin would be so kind, I believe we could get a link for you…here. There are some suggestions I stole from the experts. [Lin/Linda: Sue’s page is called Did You Drop Something?]

While I really cannot say any of the occurrences this morning incited a panic reaction in me – I actually thrive in chaos; tedium drives me insane – I suspect some of you might have had a meltdown. Vision loss plus insane, chew-happy pups plus broken china. OMG!

I remembered I was just given some 100% natural (and, yes, I know a good, stiff whiskey is 100% natural, too) ways of dealing with panic and anxiety. Thought I would share.

The sympathetic nervous system is the one that activates your fight or flight response. It is the one that causes your heart to beat faster and you to experience stress. Good when it is needed but not needed all of the time!

The system that brings you down again is called the parasympathetic nervous system. A big part of this system is the vagus nerve.

They are finding stimulating the vagus nerve helps with panic and anxiety. The most popular technique, as you may know, is breathing from your diaphragm. There are, however, a number more strategies you may wish to try.

In 2014 Newsmax published a list of simple tricks to reduce stress through stimulating your vagus nerve. Immersing your face in cold water is helpful. Another technique is to suck on something that will immerse your tongue in saliva.

According to a 2017 article in Optimal Living Dynamics, singing, humming and chanting are helpful in stimulating your vagus nerve. This article also suggests some of my favorite things: socializing and laughing, exercise and yoga.

Controlling your reactions to sight loss and its problems is almost as important as caring for your eye health itself. Next time you find yourself stressing, give some thought to your vagus nerve.

And repeat after me: Ommmmmmm…….

written Dec. 12th, 2017 Continue reading “Broken China”

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Some of Yours

Just logged on to check my email and the first thing I found was another phishing attempt. Oh, for crying out loud! These things are coming faster and the ‘phishermen’ are getting bolder.

This one was ‘from’ my email provider. Not only did they want my username AND password but they were also trying for a credit card number. Good grief. Do I look like I just fell off the turnip truck?

The problem is, for every 999 people who have not just fallen off the turnip truck, there is one who has. That is all the scammers need to make a killing.

So, just in case we have a reader who is not ‘scam savvy’, a couple of tips: scammers are often non-English speakers but the messages are in English. Misspelled? Clumsy wording? Be aware. Ask for your password? Run the other way. Soliciting a credit card number from you? Contact customer service and ask them. Do not give a credit card number out to anyone who asks for it. Lastly, check the details on the email. If it come from Sylvester in Syracuse you probably have a scammer.

Anything suspicious can get forwarded to your service provider. I also label anything from that sender as spam so I don’t have to deal with him again.

Just another public service announcement.

Oh! And I just noticed something wild. My service provider lists as ‘tells’ for phishing attempts the following: asking for personal information, mass mailings and details (show details). That spells AMD. How about that? [Lin/Linda: ::groan:: you are REALLY stretching it!!!]

And after all that, I want to talk about pessimism/optimism. Another good grief. I know the shady morals of so many is not necessarily a reason to be upbeat and sunny. My delivery and timing stink. However, if you look at it another way, we are looking out for one another and that is positive. Yes? Yes!

Lin asked me to read Dan Roberts article about how so many of us see a more dismal future than others our age who do not have AMD. The piece says we expect health deterioration and Lord knows how many other bad things just because we have vision loss.

The first thing I thought about was why should vision loss lead to worse health than any other sensory or orthopedic or general health issue? Sounds like the depression talking to me.

Roberts emphasized there being so much reason for optimism with all the tools and medical breakthroughs. I agree with him totally on that. That is part of the reason we continually share news on research and ‘toys’.

However, what I think his real message was was this: the study did not differentiate between those actually getting the information, the training and the support and those who are not. Roberts asks what the differences would be. He also asks – about knowledge and skills training lapses – the question “why not?”.

You see things and ask “Why?” but I dream things and I say “Why not?” – George Bernard Shaw

(And, yes, JFK paraphrased it a bit but he took it from Shaw.)

Part of the reason for this website is to spread knowledge and to spread hope. Every day progress is being made. Every day things are happening to make our lives – as the visually impaired – easier.

Know someone without knowledge? Someone without hope? Give him some of yours. We want to be able to say “Dan, we hear you and we are trying to do our part.”

Written October 29th, 2017 Continue reading “Some of Yours”

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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

Continue reading “Cruisin’”

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Sue’s Best Pages – Part 1

If you are new to our website, you might have looked at the LONG list of Sue’s pages and felt overwhelmed.   I hope this series of “Sue’s Best Pages” will help you to navigate through some of them.  We hope you will eventually read them all.

Spoiler Alert – why should you read these pages?

After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends.   We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.

For the newly diagnosed
  • You need to start In The Beginning.  Follow the sequence of pages with the links that are at the bottom of each page.  The first 13 were written in the early days of this journal.
  • Page 13 “A Human Doing” is where Sue starts to talk about her experiences with Pennsylvania’s Office of Vocational Rehabilitation’s Bureau of Blindness and Visual Services.  Because she wanted to continue to work, they were instrumental in getting her the assistive devices and training she needed to do that.
  • Of course, we hope you continue to read from there.  If not, please continue with the next section.
Pages highly recommended by our readers

We ask readers to rate the pages.  I’ve taken the ratings and comments to select these pages.

How She Does What She Does

Sue was 62 when her vision deteriorated so quickly that she had to stop working and driving. She could have started early retirement but she is not the ‘retiring’ type. ::smile:: She contacted Pennsylvania’s Office of Vocational Rehabilitation’s (OVR) Bureau of Blindness and Visual Services (BBVS).  The services she received included low vision, technology, orientation & mobility and rehabilitation.   Counselors for each of these services came to her home and workplace to deliver assistive technology, software and training. There was a one-time co-pay based on income. Some people pay nothing. Sue paid a small fraction of the true cost of the services, software and devices.

166.  A Day in the Life which covers the time she is not working.

288. A Day in the Life: Work Day

Continue reading “Sue’s Best Pages – Part 1”

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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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Downtime

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

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

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

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

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

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

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

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

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

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

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

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

Written September 30th, 2017 Continue reading “Downtime”

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Not As Cut and Dried

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

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

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

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

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

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

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

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

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

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

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