Category: Sue’s Musings

Keep an Open Mind

Hi! Looking for information on coping with vision loss I found an article that covered something called the Coping with Vision Loss Study. It was covered on the VisionAware.org site.

The study was a small one (n=163) but it had a noble goal: to document the process of coping with vision loss. The information came from people who had gone through the process of vision loss. 45% had macular degeneration.

The study determined the most prevalent emotional reaction to the diagnosis of a condition that would cause vision loss was anxiety. Personally I do not need to ever have panic attacks like the ones I had ever again!

Even though anxiety was a major concern for the greatest number of people, it does not mean other, emotional problems were not present. A fair number of respondents were found to be dealing with moderate to severe depression.

Of course, since the study was about actually coping with vision loss, the emphasis was on factors and strategies for getting by and avoiding these adverse, emotional reactions. The study reported respondents had a variety of suggestions for doing this. These suggestions included seeking out the most competent specialists available as well as getting a second or even a third opinion, following doctors’ directions and connecting with others who have personal experience with vision loss.

These suggestions from the study respondents centered on personal responsibility and becoming your own, best advocate (as opposed to your own, worst enemy!) Be proactive about your life and your condition. Become knowledgeable about the condition. Get your questions answered. Monitor your own vision loss and seek out training so you can learn new skills to increase your independence.

Building support networks was another idea endorsed by the respondents. The respondents specifically mentioned family, friends, specialists and helpful community resources.

Community agencies were also listed as very important. Many agencies for the visually impaired can be helpful in finding support and educational resources as well as help you find the appropriate assistive technology.

Technology does not seem as appealing to the older generations as it does to younger folks. Yet respondents encouraged those who are new diagnosed to embrace the technology that is available. Competent use of iPads and magnifiers can significant improvement the quality of life for the visually impaired.

The article mentions a great many things we have talked about. It reviews the importance of proper lighting and contrast, for example. Finding someone who can help you with these sorts of things is important.

The list of recommendations from the study authors veers off into some things that are more personal and possibly even more essential for adjustment. The list includes things like being patient and gentle with yourself. Adaptation is not an overnight process, often grieving the loss is necessary before moving on. Take time to do so, but try not to get stuck in your grief.

I paint my pigheadedness as positive and call it persistence or fortitude. However, stubbornness can also be a bad thing when it keeps you from experimenting with technology or other strategies for living. The study suggested keeping an open mind and doing what is effective.

Which brings us to the last one I want to mention: there is more than one way to skin a cat (I reiterate: where did that saying come from? Did our ancestors spend that much time hanging out and trying various ways to skin cats? Yuck.) Find new ways to get things done. The idea the only right way of doing things is how I was taught at my father’s knee does no longer apply. Learn to be flexible and do what works.

There are other things that were discovered by the study, but those are the highlights as I saw them. Hope it was helpful!

Written Feb. 4th, 2018

Continue reading “Keep an Open Mind”

Shedding Some Light

I am trying to balance out my weekend a bit. So far it has been a lot of fun and games. Of course, there is nothing wrong with fun and games…just occasionally I have to remember I am a grown-up!?

Laundry in the machine. Living room swept. Time for a page.

As I said last page, the Facebook group will be discussing coping with “all that bad news”. Now, I was not immune to the sinking feeling that comes with thinking you are going blind.

I spent an afternoon imaging the worst “I’m blind” scenario I could imagine. It was too depressing so I traded that scenario in for a better one. That one suited me better. That one had the aforementioned fun and games.

How did I do it? Stubborn as a Missouri mule and a born optimistic. I had also called for “help!” I had not read the WebMD article Coping with Vision Loss but I ended up doing much of what that article suggested.

For example, Lin and I were both researching in earnest. Each of us is a born student. Have a problem? Research the hell out of it! Things you know something about are a lot less scary than the unknown. I would suspect every one of you is a master of the horror story when it comes to vision loss. Shedding some light on the condition will reduce the horror.

WebMD suggests professional, psychological help. Uh, I am professional, psychological help. And when I was not my own, best therapist, about half of my friends are in the biz. Nothing formal, but, honey, I can talk!

I don’t think I have to tell you to allow yourself to grieve your loss. You are doing that. But remember, grief waxes and wanes and when you are not actively grieving you need to get moving. Use what energy you have to develop coping strategies.

We have talked about ‘toys’ and trainings for low vision. There are all sorts of options available. The WebMD article has a list not that different from what we have talked about. In bigger cities you might be able to get into lend/lease programs so you can try out a few, equipment options. If you need financial help, talk to government or service organizations. We have mentioned program such as state vision services as well as the Lions Club International and Center for Independent Living just to mention three.

That is pretty much what WebMD had to say. I found an article discussing a formal study of those losing their sight. I have to look at it more carefully and I will get back to you. Right now the dryer cycle is finished. Gotta advance the laundry. For now, hope this helped!

Written 2/19/2018 Continue reading “Shedding Some Light”

Sue’s Best Pages and Musings

Sue’s Best Pages

More pages coming!

Sue’s Musings

Sue’s Musings: Then and Now – Part 1 Revisited in 2018

Sue’s Musings: Then and Now – Part 2 Revisited in 2018

Sue’s Musings Then and Now – Part 3 Revisited in 2018

Sue’s Musings Then and Now – Part 4 Revisited in 2018

 

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Mountain Vistas

If you were wondering, I got home from skiing unscathed. No pervert or axe murderer. Just a very sweet man who wanted to do a kindness.

Just being on the mountain was so satisfying. If you were raised in a place like I was raised your favorite surroundings have rocks, streams, mountain laurel and rhododendron and the view goes on for miles. The prodigal mountain child comes home.

One of the best things about that view? A thousand people can drink it in and it is still there, beautiful as ever. Some of the best things in life are abundant.

Talking retirement from my school job has gotten me thinking. People say they envy me and would get out tomorrow if they could. Others say I should take this opportunity to enjoy life. Makes me wonder what they think I have been doing all these years. Makes me wonder what THEY have been doing all these years!

Don’t spread this around, but I have been enjoying my life! Years ago I promised myself I would go to my grave with minimal regrets. I have been keeping that promise to myself. Perfect record? Good grief, no! But I try to keep the regrets to a minimum.

Several years ago Stephen Covey wrote an overnight cult favorite called The 7 Habits of Highly Effective People. In the book he talked about scarcity and abundance and the mindsets that go with them.

Those who think the good things in life are scarce, hoard whatever they can get. They are jealous and possessive. Even if their job, home, whatever is not suiting them they won’t move on. They are nervous and afraid to make a mistake. They are afraid to be left without.

Conversely those who have the abundance mindset believe good things and wonderful opportunities are everywhere. There are always more ways to grow. More ways to experience life. What I have now is one thing. Maybe good. Maybe bad. But if I no longer have what I have now, I can find something new. There are exciting things out there.

No, I don’t want to retire from the school job. I am still having fun. Logic, though, dictates I leave. Not so I can finally enjoy my life but so I can continue to enjoy my life.

What am I going to do? Not totally sure. Hopefully continue to work at the psychology practice. Teach DBT. Improve my counseling skills. Become a lab rat at Will’s. Dance. Love up puppies. There are a variety of opportunities. Maybe try something I have never tried. Take piano lessons? Or do something I always enjoyed but recently have done little of. Study history? You never know.

What I do know is there is an abundance of opportunities to replace what I will be giving up. This is not a one option life. Never has been.

Are the opportunities limitless? Not exactly – have you heard about my vision? – but there are still enough to give me plenty of choices. And many of these choices are available to nearly everyone without diminishment.

How do you feel about mountain vistas? I know a few and I share. After all, good things like that are abundant.

Written February 16th, 2018 Continue reading “Mountain Vistas”

Believe in Fairies

One more time I am waiting for a ride to work. Yippee. Not! In case you have not figured it out, this is the part I hate most about losing my central vision.

A notice came in the snail mail. The Library for the Blind and Physically Handicapped in Philly is moving. They are going to 1500 Spring Garden Street. If you use their services, be aware.

I always love it when I get print notices from agencies for the blind. What if you are totally blind?

Do you have to put every piece of junk mail under a reader just so you don’t throw out anything important?  That could become a full-time job!

What else? Well, on a positive note,  I am going skiing tomorrow evening! Once again persistence and a positive attitude pay off.  I contacted a local, outdoor activity group and my sob story finally worked! I had been told to lie by omission, but I don’t. I told her I am a healthy, active 64 year old with a visual impairment. I cannot drive and I need a ride. You will not have to babysit me.

Of course I know nothing about my Good Samaritan except what he told me. Calculated risk. He had my number and he gave me the name of the girl at the outdoor activity group. I assume she is not pimping for some perverted sort. She sounded very sweet.

Just the same, Lin has the name and number of the guy. If I disappear, it was nice “chatting” with you all these months. Lin will give the info to the authorities .

If this works out, maybe I will see if anyone in their group is going rafting this spring!  Times like this I feel as if I am truly getting my life back. It is exciting to be getting back to being me!

Just takes a boatload of dogged persistence and a positive attitude. I don’t want to go all New Age or spiritual on you, but I feel the ‘vibes’ you send out really do decide what you get back. I looked up ‘expect good things’ and I got everything from Bible verses to talk about vortexes  and power places. Whoa. I mean, I loved Sedona – great, red rocks – but I am not sure I am really into sitting at a vortex to channel the energy. Just saying.

I have no idea who Brian Tracy is – he could very well be sitting on a vortex in Sedona for all I know – but he has a nice quote on a poster.  The quote is this: “You are a living magnet. What you attract into your life is in harmony with your dominant thoughts.”

I really like that quote. You could probably find its philosophical siblings in the religious literature of whatever faith, but Tracy says it in plain English. Positive attracts positive. And the other way around.

Last thing before bed… in answer to my Mardi Gras greeting to my contact at Wills (and a laissez le bon temps rouler to you all as well!) I got told the preparation for the stem cell research is moving along but still not ready to launch.  Basically positive news. I will take it.

So, to quote J.M. Barrie “ I do believe in fairies! I do! I do!”

Believe in fairies. Think positive thoughts. Create your own, little miracles. It is within your power. Vortexes or no!

Written February 14th, 2018 Continue reading “Believe in Fairies”

I Am Bored

Saturday evening. I am bored. I do not want to do a cursed thing that is available to me. Games? No. TV? No. Cleaning? Bite your tongue!

I guess that means I write. I have no clue what I am going to write about. We will be surprised (shocked, appalled, bored to tears) together.

A very long time ago I wrote how it is possible to get newspapers and magazines read to you over the phone. It is called the NFB (National Federation of the Blind) Newsline. If you qualify for BARD, you will qualify for Newsline.

Anyway, according to a recent email, Newsline is expanding their offerings. You can now have the computer voice read you Ebony, Science Daily, Scientific America online and Hollywood Reporter. Definitely a varied group of new offerings.

Assuming Lin has already put the link in but if not, search Newsline in the archives. Info for signing up is in the old page.

Looking at more of my mail, specifically things from Healio, I see we are getting closer to being cyborgs. They have approved human testing on the Orion Cortical Implant. In fact the first patient received the device last month (massdevice.com article). The implant in the brain is supposed to pick up signals from a miniature TV camera mounted on glasses. The feed is wireless. Gets my sick little brain wondering what else it could possibly pick up. It might be a bit distressing to pick up random signals. Hmmmmm….

That is not for us, though. The invention that may turn us AMD folks into cyborgs is called The Prima implant. I also mentioned this some time ago. Now they have gotten approval to do feasibility studies on people who have vision loss from dry AMD.

The Prima sends signals from a glasses camera to an implant that is connected to the optic nerve. It has 378 electrodes. That sounds like a lot but I have the feeling the vision they will have with that will be pretty pixely. Oh well, it is a start.

You folks who use aflibercept (Eylea) to hold your wet AMD in check may want to check out that manufacturer as a possible investment opportunity. Regeneron posted nearly $1.5 billion income for 2017. Whoa, baby! That is a lot of eye shots.

Another one of my pet ideas again: keep in mind we have power. Why? Because we are the ones who are making it possible for companies to make money like that.

And another thing, Healio reported Regeneron posted a QUARTERLY costs of research and development at…ready?…$528 million. For the year, it was over $2 billion.

This is one company, people! Imagine how much money all of the companies in the world are throwing at finding solutions to our problems. How can you say nothing is being done? How can you say it is hopeless? There is no way they would be spending money like that on a lost cause. Bad economics, don’t ya know?

It is now 10 pm and I can go to bed. Don’t have to worry about entertaining myself any longer. Thanks for helping me get ‘unbored’! Night!☺

Written February 11th, 2018 Continue reading “I Am Bored”

The Ends Justify the Means

Who’s in charge here? I am.

Or at least I generally believe I am. If I want it, it will happen. Either that or I will die in the attempt. I am relentless.

Besides making me insufferable, it also means I have a strongly internalized locus of control. Who is in charge here? Me.

I have discovered over the years that a strongly internal locus of control is good for many things. What I discovered when I did a little research this evening was one of the things it is good for is frustration tolerance.

Why was I researching frustration tolerance you may ask. Well, it dawned on me as I waited nearly an hour for my ride home from the gym: having a visual impairment could tax the patience of Job. This is frustrating business!

The article I found on quickbase.com makes a case for an internal locus of control as being the foundation for good frustration tolerance. It suggests, for one thing, you acknowledge your own choices.

OK. Why am I sitting in the YMCA lobby waiting for the stupid transportation? Because I want to go to my exercise class. My choice. I could have gone home from work. My being here was my choice. I was in charge.

Another thing they suggested was changing your thinking. Who was in charge of how I evaluated the situation? I was. I could have thought of it as ‘found time’ for goofing off. After all, in that time I did beat two levels of Panda Pop. Fretting over what ‘they’ were doing ‘to’ me would give away my power.

Another suggestion was imagining how things could be worse. Maybe even use argument ad absurdum just for funsies. If I had no ride to get me home from the gym, I could never exercise again! I would become a 500 pound blob. I could not fit in the bathtub and I would be filthy and disgusting and even the puppies would shun me. I would die miserable and alone! Aggghhhhh!!!!!

Get the point? Things could be worse.

In the end, when all is said and done, which ‘devil’ I chose is up to me. I am in charge – I get to say whether or not I wait nearly an hour for transportation. Variations on this theme happen every week. I can practically guarantee they will be late. I could sit home watching TV on my iPad and eating chips (sometimes an attractive alternative!) or I can chose to go to the gym.

If I chose the gym, I chose to wait. My call.

Sometimes the ends really do justify the means. Sometimes you have to put up with whole loads of cow poop to get what you want. However, what you want is ultimately your decision. Do you put up with the conditions, crappy as they may be? You decide.

Seeing things from the perspective of it being my choice makes things better for me. My frustration level goes down when I see all of this nonsense as just things I have elected to tolerate to get what I want. In this case, the ends justify the means.

And who’s in charge here? Me.

Written February 9th, 2018

Continue reading “The Ends Justify the Means”

Our Own Month

It is February! I know because everything is decorated in red and pink and white hearts in honor of St. Valentine and love, not necessarily in that order.

And speaking of love, I want to throw out a big thank you for philia, brotherly love. I am always amazed and grateful at how people look out for me. Time and time again people make sure I am taken care of. When my Zumba instructor found out I had a 40 minute wait for my ride, she had me cancel and hustled me into her car. At the school party, my boss was asking the people I was sitting with if I had a ride home. If there had been any question, she would have driven me home herself or taken it upon herself to find someone who would get me there. I am blessed.

Some of you think I live in a happy fairy tale. I have had people comment the people in their communities would never do such things for them. I disagree. Ask. I believe you will be pleasantly surprised.

Another thing about February? It is Macular Degeneration month. How about that? We have our own month!

Of course, now that it has been given to us, we have to figure out what to do with it. It is not like you can just go and return a month. And if they don’t see us using it, they will think we don’t like it. That could get awkward!

Healio reports eye care organizations are encouraging people to go for regular eye exams with ophthalmologists. Ophthalmologists and not optometrists, the guys that fit you for glasses.

If you have a good optometrist and he sees something wonky, he may refer you on, but it does not always happen that way. Go see the physician who specializes in eyes, the ophthalmologist.

Medscape also said  organizations are educating people on the fact – and this is true! – AMD is not a lost cause and NOT sure blindness any more. We are moving ahead so rapidly it could make your head spin!

So, yeah, what they said, but we should have some special way of putting our own mark on the month; don’t ya think? What can we do to contribute Age-Related Macular Degeneration Month?

One thing we have that just about all eye care professionals and a lot of organization types don’t have is, well, Age-Related Macular Degeneration! …or at least I hope they don’t. I don’t think I would want my retinologist analyzing my OCT scans when he could not see them!

But I digress again. My point is we have stories. We have skills and knowledge. We are survivors. We each have been there. Done that. Got the t-shirt. Who are more perfect to tell newbies about living with AMD than we are?

Lin adds new Facebook members almost daily. Small wonder. Medscape also reported blindness and low vision rates are expected to double in the next 30 years.  Good grief.

I would propose we share our stories and knowledge with others. An insider’s perspective on AMD. Maybe adopt a ‘little sister’ (or bro).  Pass on the philia. After all, it is the month for love.

[Lin/Linda here: in the Facebook group, I am also asking folks to write about their journeys to add to our already wonderful list of Guest Authors.  It’s easy – you write the words, I’ll edit and format them in a page or pages and publish them on the website.  I’ve also asked our members to write short statements of advice for those new to the diagnosis.  I’ll start publishing them as I get them so send me yours to add to the list.]

written Feb. 6th, 2018

Continue reading “Our Own Month”

Sue’s Toolkit – 2 Years Later – Part 2

Hi. Sunday and the snow is coming down! All day I have been fighting “it’s snowing! I don’t have to do my work! We will have a day off tomorrow!”

That’s me, by the way. There are no school-aged kiddos in this house. I have been fighting procrastination ever since the snow started around noon. Did manage to get some of my ‘homework’ done. One report written. I don’t want to think about how many more to go!

So, taking time to write a quick page before going on to report #2. I got one of my mymacularjournal.com ‘homework’ assignments back from Lin. Full of ‘red marks’! “Did you mention this? How about that?” Good grief!

I told her I would blame my having to do this page on her.? So there. [Lin/Linda: What can I say…we have high standards here. ::grin::]

Here we go…what has survived the test of time redux.

First of all: these are not advertisements. There are plenty and PLENTY of other products that mostly likely work as well. These are the ones I tried and they worked for me. I have no investment in any of this stuff. If you use other things and like them better, make a comment, write a page. We want to hear. Also, caveat emptor. If you buy something and “hate it!”, it’s not my fault. These are not recommendations.

Now that that is out of the way…my CCTV is from Low Vision International. The model is the Magnilink Zip 17. The 17 is for the screen size. Lin wanted me to tell you what I have and like but, remember, there are probably dozens of others. The big selling point for this one is it is portable. Maybe about 20 pounds including the case. It goes to school. It goes to the office. It goes home. Good deal. Don’t need portable? Maybe this one is not for you.

Lin also wanted me to mention the iPad with the Justand. I seldom use it but if you cannot get someone to plop down $3500 for you to get a CCTV?  The iPad on the Justand is a viable alternative. [Sue wrote about the inexpensive Justand that holds the iPad above what you want to look at. You can see the image on the screen and can enlarge it as needed.  Her page Good Stuff Cheap.]

Why do I seldom use it? I have a portable CCTV. Using my iPad as a magnifier means it is not available for anything else.

Like watching TV for example. Lin asked how I watch TV on my iPad. (I think she knows. It’s a test.? She wants to see if I really know!) I went to the app store and searched for some of my more favorite networks. I have CBS, NBC, PBS and FOX apps on my iPad. You have to ‘subscribe’ (read ‘buy’) if you want the good stuff. By good stuff I mean prime time and current, but sometimes they throw you a bone and you can watch your shows for my favorite word: free. Most of them require you watch the commercials, but sometimes the commercials are the best part! [You can also subscribe to services such as Hulu and Netflx and watch their programming on the TV or on your tablet.  If you are an Amazon Prime subscriber, you can also watch TV shows and movies on the TV or tablet many are free, some have a cost.]

And when I say require, I mean just that. You cannot fast forward through them. But you can go to the bathroom or get something to eat if you want.?

Oops. This is getting long. Catch up on the rest of the questions later! I gotta get something to eat. (Bet you thought I was going to say something else!?) Bye!

Written Feb. 1st, 2018

Continue reading “Sue’s Toolkit – 2 Years Later – Part 2”

Sue’s Toolkit – 2 Year Later – Part 1

Allow me to start this page with a statement of fact: I am not normal. I do housework under duress. If God wanted me to cook, he would not have invented Chinese buffets and frozen lasagna.

In short, if you are looking for tips and equipment that will make cleaning and cooking easier for someone with a visual impairment, this page is not the place.

That place IS MaxiAids. They have a fantastic collection of adapted materials. Many of their products are designed to help with domestic drudgery…ah, chores. If you are in need of those sorts of products, MaxiAids is wonderful.

Oh, and by the way, none of these are advertisement or recommendations. All of this stuff I either use or, in the case of the MaxiAid stuff, had pointed out to me as a valuable resource. What fits my needs may not fit yours.

Also, if you want to buy any of those types of products, use them and write reviews, welcome guest authors! It just ain’t going to be me doing it.

[Lin/Linda here with a very red face! After all Sue’s fuss about my ‘grading’ her page, she caught me!  I’d forgotten to publish THIS page first.  Whoops!  There are a lot of things I could blame it on but I’ll spare you all.  Sorry, Sue.  You can fire me anytime.  ::grin::]

What I am going to do is do a brief rundown (apparently better than a run-over) of what I have used that has stood the test of time. What technology am I still using two years later?

Let us start with what I just ordered: mini monoculars. Yes, I have had several. The problems with them are 1) they don’t survive water – especially salt water – well and 2) they are not built to be chew toys. The last one I had got chewed to bits. Puppygirls strike again. The one immediately before that fell off a paddle board in the Bahamas. Several times in fact.

When not being gnawed or submerged, the mini monoculars are great for surveying your surroundings from a distance. They are good for street signs and identifying what is running across the field towards you. Yikes!

I bought a larger monocular. I also bought a small pair of binoculars. They were both too heavy to wear around my neck all the time.

What I would recommend more than anything is an iPad. My iPad may be my prize possession. With the zoom feature I can do scads of things! It is onto my iPad that I have downloaded all sorts of free apps including apps for major television stations.

I am not a big television fan. If it doesn’t have NCIS somewhere in the title, I probably don’t watch it. However, when I do want to watch a program, I can often stream an episode of something or other for free.

The really good thing about watching TV on the iPad is your ability to move the screen as close to your nose as you need to. Remember relative distance is a way to magnify. Also with the iPad you can replay a scene if you don’t quite get what happened.

I have talked about all sorts of apps that are on my iPad. Honestly, I may use the KNFB Reader occasionally and NaturalReader occasionally but not all that often. My eyes are still strong enough I can use the iPad camera with a free magnifying app to read menus and other short stuff. [click here for a good article about the features of the iPhone and iPad that make them so good for those with low vision.]

If I want to read a book, I use BARD, also an app on my iPad.  Remember you have to be declared legally blind to get BARD. If you are not legally blind you can buy e-books and zoom them. [Read more about BARD and e-books in Sue’s Page Around the World of Books.]

I am over my 500 words so I will just quickly mention two other things. The first one would be Zoom Text. If you are working on a desktop computer – or at least using a large monitor – ZoomText makes life much easier. Navigation can be a bear since half the page is off the edges, but at least you can see the half that is on the screen.

Last but not least is my CCTV. I use that nearly every day. Without it, I feel like I lost an arm. I can write checks and notes using it. I can read articles for pages. It gets used.

Once again, my CCTV was $3500. Mine was paid for because they wanted to keep me working. You may not have that opportunity. However, spare $3 or 4K? The investment, in my mind, would be worth it. [There are SO MANY CCTV products that we can’t review them at this time.  Search the Internet, ask your Low Vision Specialist or other resources.]

That is it. That is barebones what I actually use after two years being a VIP. Hope the info helps.

Oops! PS I forgot my Max TV glasses! No TV but they are great for doing classroom observations, seeing my students in class and watching movies and live theater performances.

written Jan. 31st, 2018

Next: Sue’s Toolkit – 2 Years Later – Part 2

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Making Elmo Proud

Rough day. I will spare you the details except to say I was on a rip and a tear most of the day. I need to get to hip hop and dance my frustrations away. If you have the opportunity, I would recommend it.

Anyway, after I got home from trying one more time to leash train the puppygirls – with one arm that I could swear is now a good inch longer than the other!; I got some ideas about equipment to keep them from pulling today at work; gotta buy it! – I sat down and looked in my email. The new Healio had an article on shared decision making in medicine. Cool.

Now I don’t know about you, but my mother thought ‘Elmo’ – our family doctor – sat on the right hand of God. Don’t get me wrong, I liked him just fine, but there was a limit to my devotion to his Word.

My mother’s devotion to everything our family doctor had to say helped turn me into a very difficult patient. My favorite questions to any doctor are “Why?” and “Explain that to me.”

Okay, so the second one is not a question. Same difference. Bottom line is I am a horrible patient and “because I am the doctor” is never the answer you want to give me.

So you can imagine I was thrilled to see medicine is starting to be reasonable and see things my way!? After 64 years it is about time!

Shared decision making seems to have gotten some traction early this century. It is getting even more popular because it improves patient knowledge, reduces uncertainty and reduces overuse of services.

A National Learning Consortium fact sheet from 2013 listed more benefits of shared decision making in medicine. That article listed how the process allows the patient to learn the pros and cons of any procedure. It allows the patient to take an active part in his care and this leads to better follow through.

Sounds good to me! In fact, even if we did not realize we were promoting the concept of shared decision making, we at Mymacularjournal.com have been preaching patient empowerment since the very beginning. Why? Because I am not a mushroom and if you are following us, you are not one either.

Because these are MY eyes and at the end of the day, for better or worse, I want it to be my decision what happens to them. And third, add your reason here. I suspect you have one…or two.

Patient empowerment. Knowledge is power. Learning about our condition allows us to help our doctors provide better treatments. It allows us to understand the value of treatment and treatment compliance. And…it gives us back a piece of our self-determination and maybe even a bigger piece of our self-respect.

I think that is a good thing. I try to practice it and, you know what? I think Elmo would have been proud.

written Jan. 31st, 2018

Next: Our Own Month

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Sue’s Musings: Then and Now – Part 5 – 2/1/2018

If you are looking for the page Sue’s Toolkit – 2 Years Later, click here.  I’ll be republishing this page in a few days.

 

I’ve changed the direction of this series to share the pages Sue wrote about the apps and technology that she uses or has tried.  This is just the first page, more to come.

Sue’s Toolkit

Two of the most popular of Sue’s pages are about what apps and devices she uses at work and at home to keep up with her busy schedule:

When Sue’s vision declined in early 2016 & temporarily prevented her from being able to work, she contacted Pennsylvania’s Office of Vocational Rehabilitation’s (OVR) Bureau of Blindness and Visual Services (BBVS).  They helped her financially & with advice from Vision Rehabilitation Therapists (VRTs), she put together a ‘toolkit’.

Next in this series: Sue’s page about which of the apps and devices she’s still using 2 years later.

Technology she’s written about

Managing medications

There are apps that allow you to create audio labels for your medications & some pharmacies will print audio labels for you–>Managing Medications

Audio ATMs

Some ATMs allow you to plug in earphones so you can hear instructions–>Talking to Your ATM

Navigating inside and outside

BlindSquare App – Aug. 2nd, 2017

App & device to monitor your eyes

ForeSeeHome device and MyVisionTrack app – by prescription to monitor your eyes–>Keep an Eye on Your Eyes

Implants below the retina – Bionic Eyes

The Argus 2 and Prima implants for severe vision loss–>Before I Go

compiled 1/28/2018

Continue reading “Sue’s Musings: Then and Now – Part 5 – 2/1/2018”

Cool Things

Greeting! I decided to stay home today. Too much to do. So instead of doing housework or work work I am working on a page.? Hey, makes sense to me!

I was doing a little web browsing and came upon the site for the “American Association of Ophthalmology. Protecting Sight. Empowering Lives”. Nice motto. Established 1896. Fairly old for ‘the colonies’.

I was looking through the sight site ? and discovered the pages from the annual meeting in New Orleans. There, in living color, was my doc! Carl Regillo was program co-director for the retina section. How about that?

Ever play Six Degrees of Kevin Bacon? It is a silly game based on the theory of six degrees of separation. The theory is anyone can get to anyone else in six moves or less through associations. I used to be able to get to the president in four moves. I was friends with the father of the secretary of the state department of agriculture. He knew the federal secretary of agriculture. The federal head knew the president. The president was my fourth jump. Done in four moves!

Anyway, started to think how many moves it would take to certain people through Regillo. He cuts it down considerably! But that is not my point…

My point is: they are doing some cool things in ophthalmology!

For example? Well, do you remember I said it would not be long before they are using gene therapy with AMD? Boy, was I behind the curve! Things in that field are happening now!

The AAO stuff was in abstract form and pretty scientific. Allow me to go to the popular press and get my info? If I sit down and try to analyze the other stuff, that is all I will get done today!

BrightFocus and WebRN both ran pages on gene therapy for macular degeneration. The BrightFocus article highlighted a gene therapy called Retinostat. Retinostat is for wet AMD. It sounds as if the inserted gene programs the cells in the eye to produce anti-VEGF. Sort of like refitting a factory to produce a different product.

Retinostat is nct01678872 at clinicaltrials.gov. What is listed is a phase 1 study (safety and tolerability) and they are recruiting by invitation only.

The second wet AMD gene therapy possibility mentioned in BrightFocus is AAV-sFLT. This is also supposed to block VEGF. This study is nct01024998. It is active but not recruiting. That is also phase 1. At the end of the first year, gene alterations from AAV-sFLT were still blocking the production of VEGF. Bottom line may be fewer or even no shots!

And, as for usual, wet AMD advances seem to happen first and our third potential gene therapy is also for ‘youse guys’. Specifically it is REGENXBIO’s RGX-314. The number is nct03066258. It is phase 1 – once again – safety and tolerability and absolutely no promises. They are recruiting. Santa Barbara, Baltimore, Boston, Philadelphia, Memphis and Houston.

So, yes. There is progress there in gene therapy for wet AMD, too. Gene therapy is in its infancy and some people object. It is up to you to decide for yourself if you believe manipulating the very code that makes up who we are is moral or are we playing God. Not my call. If you are alright with it, they could have it for you in a few years. Good luck!

Written January 28th, 2018

Continue reading “Cool Things”

Shop, Shop Around

Give blood…raise puppies! Quite honestly, I look like I have run through a brier patch. Sharp, little teeth and delicate, ‘old’ (whom are you calling old?!?) skin are a bloody nasty combination…literally. One of the things that bothers me about getting older is tissue paper-thin skin and always bleeding somewhere on my body. Need to wrap me in bubble wrap!

And while we are on the topic of ‘old’, I wanted to mention I went to the aging office for ‘the talk’. That was the Medicare talk.

It was not as horrible or confusing as I thought it was going to be. The adviser suggested I apply for Medicare Part A and Part B in April, four months before I turn 65. Since I am in the retirement system for school employees in the state, she suggested I forego the rest of the plans and go with the ones the retirement system offers. Since I qualify, I can get an extra $100 per month by buying the plans from them. Let’s just say she did not have to suggest it twice.

Before buying a supplemental or advantage plan from another provider, it might be wise to check with your employer or union. They might have something you are not now aware of. Obviously compare the plans offered to two or three of the other plans available. The one we looked at for me offered the same benefits the one we had for Daddy did. Both my father and I were very pleased with that one. It was only that $100 a month savings that convinced me not to go with that company. (So, apparently I really can be bought!)  [Lin/Linda here: I thought that Medicare had a page to search but I can’t find it. Here’s a page  where you can enter your zip code and you will get the supplemental or advantage plans that you would qualify for.  It’s a non-government website & sponsored be eHealth.  Click here for that.]

Remember: just because you have become an old man now, there are still some things you don’t understand now…you’d better “shop, shop around!” (With apologies to Smokey Robinson).

And if you are really not sure what you are doing – like yours ever lovin’ truly – call the aging office in your area and say “Help! I need somebody! Not just anybody” but someone who knows the Medicare system. They should be able to help. (Apologies Paul and John wherever you may be.)

Enough of that! Can you tell it is Friday after a full week and I am more than a little out of it? Yep. I get a little slap happy, but somebody’s gotta do it. Let all of you refined people feel superior! ?{curse it! I wanted to put a goofy smiley face there but my emoticons aren’t emoting. Lin, if you please!}

The nice lady at the aging office gave me a couple of publications. I got “Your Medicare Benefits” and “Your Guide to Medicare’s Preventive Services”. Am I going to read them? Do you want me to lie to you? I have a good idea what I have to do, but if I forget something, they can be good resources. [You can get those documents and more on the Medicare website here.]

So there you have it. My first foray into services for the ‘elderly’. We will ignore the fact I don’t feel a day over 40.

And, does this page have a thing to do with Age-Related macular Degeneration? Ah, nope.

“Catch ya on the flip-flop! 10/4 good buddy!” [Sue says that comes from the song Convoy! ::smile::]

Written January 26th, 2018

Continue reading “Shop, Shop Around”

Sue’s Musings: Then and Now – Part 3 Revisited in 2018

From March 20th to March 30th, 2016
  • “Those, quickly, are the IMPROVE skills from DBT. They are used when there is nothing else you are able to do that moment to solve the problem. You use them when either circumstances are not right or you don’t have the energy to deal for another minute or when you are overwhelmed with the chaos.”
  • “Change is stressful. Even good change is stressful. This is my second week back to work. Right now it is only part-time but that is enough. Less than two months ago I was working 50 hour weeks and thriving on it. Now I come home after a 7 hour day, three days a week and I am wiped out. What the hey?!?”
  • “This is a toy story. Yesterday the nice delivery person in his reindeer-brown truck brought me a present. What I got was a state-of-the-art, high-end closed circuit television system. This is also known as a CCTV.”
  • “Click here to see one list of portable video magnifying Aids, including the SmartLux Digital Video Magnifier.  This is not the only source of these products, there are other suppliers.  Search for “low vision aids” (include the quotes in your search).”
  • “We sometimes have to weather a crisis by getting out of our own problems and helping someone else. It gets the focus off of us. It gets us back into the human race and allows us to flex our compassion muscles instead of our self-pity ones.”
  • “So there you have it. Yesterday stank. Nobody rescued me so I had to rescue myself.”
  • “The simple fact of the matter? I am a slob. I am a piler. One of the major reasons – or at least a contributing factor – for my becoming a professional and not a domestic goddess is I hate to clean.”
  • “There will be times you want to be ruled by your emotional mind even though you know it is not a long-term or rational solution. There will be times you will be urged to do the “logical” thing and ignore your feelings. Remember there is a peaceful alternative where both your emotional and your reasonable mind can get some of what they each want. That place is in your wise mind. Try to go there often.”
  • “My VRT (Vocational Rehabilitation Therapist) also suggested I put a white sheet of paper on my dark table at work. I am supposed to put anything dark – like my pens or my stopwatch – on the white sheet of paper. That way I will be able to find things I have put on the table a lot easier.”
  • “Although I am not terminally naive – I pretty much know that money makes the world go ‘round – I find this all discouraging. Good people doing good work are being held up while someone else plays Monopoly.  Maybe not totally fair but that is how it looks from my perspective.”

compiled Jan. 21st, 2018

COMING SOON: Sue’s Musings Then and Now – Part 4 Revisited in 2018

 

The Heat is On!

Technically I have a TON of work to do. I brought all sorts of stuff home from the office with good intentions. However, we took the pups to the vet, I satisfied a once-a-month contract I have, we got lunch out, I got a haircut, I took the puppygirls out to run, I went out to cross-country ski in the church field (okay, around in circles but you do what you can when you can’t drive), then I came in and vacuumed, swept and dusted. If it is alright with you, I am done!

Tomorrow is another day. With the things I did today done, I can better concentrate on my other stuff. Right? Hope so, because it really is a crapload of work! I did say no rest for the wicked before; right?

In the meantime, I just wanted to point out how well some other people have been working! Medscape reported that in November a team from Jerusalem and a team from Miami jointly reported great things about the stem cell research they have been doing for dry AMD and Stargardt’s. Their product had passed phases 1 and 2 of the clinical trial with flying colors and is now ready to roll into phase 3. What was really exciting was the report of visual improvement in 18 out of 26 patients.

Now mind you, there was no real control group and the results could be a fluke. However, their star lab rat showed an incredible 38 letter improvement in her treated eye with a loss of two letters in her untreated eye. Not too shabby.

Since Medscape named only the team leaders and not the product, I did a little backwards sleuthing and discovered the head Israeli researcher, Elat Banin, has been working with a product called OpRegen and that is what she presented at the American Academy of Ophthalmology meeting in November. The parent company is BioTime.

According to a press release from BioTime the stem cells are delivered through the subretinal space by “simple intraocular injection”. The cells are “xeno free” meaning there were no animal products used in their production. Immunosuppressants are required for three to four months.

More good news is OpRegen has been granted fast track status by the FDA.  Expedited reviews, etc., should lead to faster release.

Now for the good/bad news. The clinical trials.gov number is nct02286089 and they are recruiting! That is, they are recruiting in Israel and California, specifically Jerusalem, Petah Tikva, Rehovot and Tel Aviv as well as Los Angeles and San Francisco. Not sure what happened to the Bascom-Palmer, Miami, site but you could call and check it out. If you are not in any of those locations you are probably s.o.l. That is the bad news. [Lin/Linda here: ‘s.o.l.’ is short for ‘surely out of luck’! ::grin::]

If you know anyone with advanced, dry AMD who lives in Israel or California, give them a head’s up. They might want to try to become a lab rat.

And we in other areas? Remember this is not just a race between research and our failing eyesight. It is also a race among the drug companies. The one who brings in a viable product first, gets the BIG money. I suspect this news put a fire under more than a few. We can only profit from their singed bums!

The heat is on and great things are happening! This is a the best time in history to be going blind.

Written January 20th, 2018

Continue reading “The Heat is On!”

Sue’s Musings: Then and Now – Part 2 Revisited in 2018

From Feb. 29th, 2016 to  March 20, 2016
  • “I am waiting for my referrals for services to come through so I can get started on returning to a life that looks like the one I just lost and is “a life worth living” (a DBT/cognitive therapy Goal Definition depending upon whose life it is). Did I mention I have no, zero, nada, none patience?”
  • “Joy of joys, the Bureau of Blindness and Visual Services tech guy loaned me a CCTV. That is closed-circuit TV. You put a paper or whatever you want to read under the camera and it shows up HUGE on the screen. ”
  • “There is something called  ‘positive manipulation’. Your mother used it on your when she told you “here comes the train! Open the tunnel!” so that you would eat your smashed peas. You have used it yourself. We just don’t like to admit it because manipulative has been paired with words like evil and conniving in our culture. Everyone of us is manipulative. ”
  • “So those are the ACCEPTS skills. They are primarily distraction skills for dealing with a situation that cannot be changed….such as this pesky vision loss thing. I hope they are helpful for you. Use them in good health.”
  • “Amazon’s amazing collection of stuff includes all sorts of nifty things for people with visual impairment. Sort of one-stop shopping for those of us who don’t see so well anymore and may depend upon others to get around.”
  • “Like I said, people are great, but they don’t get this Macular Degeneration business. Enter the handy-dandy Apple AMD Simulator.  On your iPhone or iPad go to the App Store and search for ‘macular degeneration rnib’. RNIB stands for Royal National Institute of Blind People. ”
  • “The American with Disabilities Act (ADA) has laws governing the rights of the disabled employee and the employer in companies with 15 or more people.”
  • “I rode my bike! To get to the trails I use, I have to cross two fairly major roads. I “turned my mind” towards acceptance of my limitations and walked my bike across the roads. Did not want to but I wanted to be roadkill even less. ”
  • “There are days that this vision loss gets to you big time. There are days you run into seemingly every idiot in the world. Mark Twain said: “Never argue with a fool. Onlookers may not be able to tell the difference.”
  • “This post is a collection of mind weeds and stray thoughts. If you know me, you know the mind goes a lot of different places. Get ready and try to keep up.”

written Jan. 18th, 2018

Next: Sue’s Musings Then and Now – Part 3 Revisited in 2018

Let Us Try

Happy Monday! Martin Luther King Day in the US so there is no school. I forgot and had my ride scheduled so I had to cancel. Oh well….

Home and doing odds and ends. Lin reminded me it was the end of January two years ago I started on this ‘adventure’ in earnest. I should have given it more thought myself. It is now ski weather here and I have been trying to find ways to the slopes. People don’t like to give me the time of day when I contact organizations.

They imagine being in charge of some decrepit, old, blind woman flailing her white cane as she flies down the slope! Not exactly the case. Many of us are actually very competent and independent given our vision losses.

Vision loss bring up thoughts of skiing? Yeah, sorry. It was right after a glorious day on the slopes that I ‘lost’ my second eye just about two years ago. I was in a tizzy. But keep in mind, I was skiing three times last year (thanks to my husband and the daughter of a friend) and I am going to try to get there three times this year. And if I get there and discover I am no longer capable? I tried.

That is probably one of the things I like to preach about vision loss, or at least my level of vision loss. (You can never tell how you may react if given a greater challenge so be kind to yourself). You never know until you try. There are all sorts of ways to skin the proverbial cat (although I am not sure why you would want to!) and you just may have to try a few of them before you hit upon one that works.

The flip side of that coin is this: if you are a caregiver, friend, spouse, child, whatever to a visually impaired person, give us a chance and let us try. As long as we are not going to cause mayhem or mass destruction, what is the harm? Sure, be there to bail us out if you insist, but let us try.

Now remember, I am not talking about operating heavy machinery – yes, such as a car – but walking, skiing, riding a bike, even things like using the microwave or the washer; I am pretty sure many of us can have those things covered if given the chance.

Our vision loss has taken away some of our independence. Please don’t take away the rest.

When we started this project, I was asked what I thought others could do to help the newly visually impaired. I said it would be to support that person in continuing to be herself. Looking back, I agree with myself.

So I guess my message for our second anniversary would be this: Find ways to be you. AMD has taken part of your sight, not part of your soul. Find people who will help you to remain yourself, foster your talents and promote your interests. If they are not in your life now. Find them.

Remember, you need you and we need you, too.

And now I guess I need to try somebody who will give me a ride to the slopes!

Written 1/15/2018 Continue reading “Let Us Try”

Sight Loss as a Challenge

Greetings. I have a dozen things to do and very little done. Maybe writing a page will help to get me motivated.

I read the pages from our two, most recent guest authors. Great pages from what sounds like two, good people. They both sound like people who took their vision loss as a challenge rather than a death sentence.

People who may have had to let their disability slow them down but never let it stop them.

Right now i’m pretty sure there are some of you who are bristling about that last paragraph. How can sight loss be a challenge? Challenges have a chance of being overcome. How am I going to overcome THIS ? I cannot accept this. I can never resign myself to going blind!

I touched on this a little before but I want to go into this concern in a bit more depth. Acceptance is not resignation and resignation is not acceptance. Acceptance is acknowledging a set of less than ideal conditions exist. For example: I am losing my sight. Acceptance also means acknowledging there are some things you have to give up or some new strategies you have to adopt in order to get by. Acceptance allows you to test the environment and make the allowances needed to move forward.

Resignation is not acceptance at all. Resignation means giving up. It is ripping your clothes and throwing yourself on your proverbial sword. Done. Over. Finis.

I know people who have given up. After all, “I is a psychologist; I is.” They moan. They complain. They lament the truly raw deal they have gotten from life.

What is left for these people? Not much. Not if they don’t learn to accept their situation. Resignation is a dark pit with no ways out. Acceptance allows you to see the branching tunnels with the glimmers of light at their ends. Acceptance makes room for hope.

There is a saying, “happiness is wanting what you have”. It is sort of a pop culture rendition of the Second Noble Truth. Yeah, Buddha again, and I’m a non-practicing Methodist, for crying out loud. What can I say? Siddhartha was one enlightened guy. I like him!

To refresh your memory, the Second Noble Truth says that desire, craving, wanting is the root of all suffering. In other words, pining after what you don’t have and you cannot get makes you miserable. Accepting the situation and being grateful for what you have left lightens the load.

This is not exactly easy. Looking on the dark side has survival value. Therefore we are pretty much pre-programmed to keying into and lock-on to the negatives in life. After all, your ancestors needed to see the wolves in the bushes, not the pretty flowers that were on those same bushes! Seeing the positive takes constant effort and a whole lot of – another DBT alert – turning the mind towards what you need to do to accept and feel better.

So kudos to Vickie and Bob. They seem to be actively working to accept, make the best of bad situations, and move forward. And encouragement to the rest of you. 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.

Remember accepting is not resignation and we who accept are NOT giving up. There will be an answer. We will find it.

January 13th, 2018

Next: Underwhelmed

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Underwhelmed

It appears the only time I get to write anymore is when I am waiting for my ride. I may have to leave this and dash out the door at any second. Or dash upstairs and grab a new pair of pantyhose. Whatever possessed me to put on stockings with two ankle biters (literally! ) in the house is beyond me.

Speaking of my puppygirls, I cannot believe they are zeroing in on four months of age and 30 pounds each! They are totally, TOTALLY! a formidable demolition crew. They are now tall enough to reach the tops of tables and nothing is safe.

Finding a matching pair of gloves or slippers is also a challenge. Yesterday I had on one slipper sock and a slipper! Who cares if they matched? We are all friends here!

I have been aware I need to write the final page on Seeing AI. I have been using the scene option on and off with mixed results. Etta Puppygirl was NOT pleased to be called a cat! Basic scenes such as a Christmas tree at the Y are dealt with a little more efficiently. The Christmas tree was identified correctly. However, a rack of little girls’ gymnastic leotards was identified as papers on a shelf.

It appears they have backed off from attempts at being exact in their descriptions. When I tried taking a photo of a coffee maker I was told it was something indoors. I also got some responses that suggested the machine was not sure what it was. I find it refreshing when a machine admits its shortcomings!

I guess my final word on all that is something along the lines of “Great progress but still a ways to go.” I am a ridiculously hard critic, I am aware, but I would not depend on the app at the level of accuracy I have gotten from it. Maybe if I were blind and getting 50% accuracy I would be thrilled. With the vision I have, I am sort of underwhelmed.

On to the person recognition feature. I admit, I tried it one time. I recently cannot get my act together. Work, pups, researching retirement, etc, and it is bedtime. The one time I did try it, the thing thrilled my 54-year old gym buddy. It estimated she was 33! It also said she was happy. My buddy has a great smile.

Not much of a review, I admit. Anyone else want to take on the assignment? I am a very harsh critic and some of you may be more pleased than I have been.

I still see scenes and I use other clues to recognize people. Remember to use setting, body type, posture and walk not to mention voice to identify people. In two years I have succeeded in training one – that was 1 – person to tell me his name when he starts to speak to me. In other words, don’t hold out hope most people are trainable! Another option is to buy a monocular and check out faces that way.

That is it for now. Gotta roll!

Written January 12, 2018

Next: Let Us Try

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Tough Decisions

Just want to start a quick note before I go out again. I have had all sorts of thoughts recently, things I could write pages about, but it has been very busy. You can only shove so many things into a day. After that, they start to fall out around the edges.

My big worry this past week has been my competence. I hate being incompetent. I hate it! I hate it! Ever since my boss at school said she has been correcting mistakes I have been ruminating.

I imagine everyone of you has known someone who stayed on a job after she had lost her usefulness. Sometimes it is just naïveté. Sometimes it is out of personal need and sometimes it is just plain maliciousness. “Let’s get the organization before we go.” I have known people in all three categories and I don’t want to be seen as being like any of them.

My boss and I had a little discussion this morning. We were both in tears. I don’t want to quit, but I don’t want to give up my self respect either (not to mention the $6,000 or $7,000 I think I am losing every year by not taking my pension!). She assured me I am nowhere near being in the same category as any of those people.

That is a relief but how do you know when it is time to go? My boss tells me she is a ‘nice person’. This is true but in this case that translates as she will bail me out until I have ruined my reputation and any positive legacy I may want to leave. Then I leave in disgrace. Going out under a cloud is not my cup of tea.

So, I have this decision to make. Stay or go. There are many people who would leave a job in an instant for a guaranteed, steady income and endless leisure. The thought of endless leisure terrifies me. Remember busy people are happier and live longer? I want to be one of those folks. That means plan b and plan c and as many alternative game plans as needed.

I guess I need to focus on what I can do as opposed to what I cannot do. I am doing more counseling and I am a decent teacher. I am still quite physically fit for my age. There are options in all those areas. And none of them requires the attention to visual detail my school job requires.

Other things? I love dogs and dogs love me. I love kids and kids love me, too. I could become a professional dog walker or a tutor or even just a ‘foster grandma’.

Very often we see our glass as half empty but actually it is quite full. It is just a matter of perspective.

So back to discussion questions: how do we know when it is time to give something up? A job, a car, whatever. Are the people we are depending on to help tough enough to tell you the truth or will they let you crash and burn?

And most importantly, what next for you? A social security web page I saw gave the life expectancy of a woman 65 today to be 86. Twenty one years is a long time to do nothing.

Cultivate the talents and interest you do have. Develop new ones. Good eyesight is a precious thing to have but it is not the only thing you have. Get going.

Written Jan. 9th, 2018

Next: Sight Loss as a Challenge

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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”

Bake It Out

Greetings from Chaos. The last few nights the puppygirls have had me awake two and three times each night. Lack of sleep is a stressor. Stressors increase cortisol and cortisol damped immunity. Bottom line: I’m sick.

I went to exercise anyway. Creating an artificial fever is a good way to fight infection. (See Vasey’s article in InnerSelf if you don’t believe me.) Athletes – and athlete wannabes like me! – do it through sustained exercise.

I also came home and took a hot bath then curled up for a nap, covered in blankets. My mother used to suggest I ‘bake’ it out of me and she was right.

However, it is not just the heat fighting the germs. There is scientific evidence that certain types of immune cells do better in a warm environment. In a December 13, 2011 article in ScienceDaily it was reported CD8+ cytotoxic T cells ‘like it hot’.

T cells are macrophages, ‘big eaters’. There are a number of different types of T cells and I don’t believe CD8+ cytotoxic T cells have a thing to do with AMD as other T cells have been suspected to.  Of course, I could be dead wrong. However, it is a good way to get me back on the topic.

Oh! Another detour: I am taking turmeric for the inflammation in my rotator cuff tendon (killing me now because I ramped it up in yoga. Someday I might learn.) Searching the combination turmeric + age-related macular degeneration I discovered turmeric is an antioxidant. It is recommended by all sorts of websites with natural, earth, sun, alternative, etc. in their titles. The take home message on this is: it is a supplement and has not been proven to do anything for AMD. It is helping my tendonitis. Sample of one. Take it for what it is worth. Do your own research. Pay your money and take your chance.

Since I am still feeling a little rough, I will probably just introduce the topic Lin wants me to cover and come back to it later. The topic is Seeing AI from Microsoft. I had the 1.0 (or whatever) version on my iPad and got very very strange results. This was with identifying people and scenes. I did not use any of the other programs contained in the app because I already have programs to do much of that stuff on my iPad. Basically, I did not need the redundancy.

I am proposing I look at all of the new things 2.0 does and compared their performances to the performances of the apps I already have. Sound good? Can we make this a class participation project? I would like to hear what you think?

The first positive thing I noticed was the app upgraded automatically. That was a plus! Let us look at short text and see what we think.

Written December 23rd, 2017 Continue reading “Bake It Out”

Suck It Up, Buttercup

I try not to throw pity parties for myself. I really do. Some of the time things might not be great but I get by without a lot of feeling sorry for myself.

However, sometimes other people send out the pity party invitations and I am very tempted to attend.

What am I talking about? I was finished with exercise class and waiting for transportation. Again. A friend asked if I needed a ride. “No. I’m good.” And I waited…and waited…and waited. The instructor finished whatever instructors do after class and started for her car. Why was I still there? Was I sure I had a ride? She looked at me with such concern I wanted to cry.

I finally got home – five miles – an hour after class had ended. I got to eat at 8:30. God, this is a pain!!!!!!!!!

Since it is generally good to work through these things before they grow legs and run away with you, I decided to write a page. Self help, ya know?

I know none of you fine people ever feel sorry for yourselves, but bear with me while I work through this; OK??

I found a Psychology Today article from 2013. Russell Grieger, the author, seems to blend a bit of DBT (alright, so I see DBT in just about everything) with a bit of “suck it up, Buttercup!”   Grieger quotes George Bernard Shaw as saying “People always blame their circumstances for what they are. I don’t believe in circumstances. The people who get on in the world are the people who get up and look for the circumstances they want and if they can’t find them, they make them”.  Grieger divide people into two groups. To shorten what he said, these groups are the whiners and the responsible ones.

I don’t believe there are two groups. I feel there are two approaches and most people flip back and forth. Sometimes you have to utter a few “Really!?!? Are you KIDDING me?!?!”s before you can get back in the game.

Geiger does make some suggestions for not getting stuck in the whiners’ camp. Some of them are rather familiar. Pain is the human condition. What makes you think you are so special?  No, life is not fair. Shit happens and it happens to the nicest people. The corollary to that is “the bad guy does not always die at the end of the movie. Sometimes he gets the girl and rides off into the sunset.”

Then the much nicer ones. You are stronger than you think. You can chose not to let this dictate your life.

Geiger did not add these but I am going to. The reason I ride the #¢≠π~£! van is it is a means to a positive end for me. Without it I could not be out in the community doing my thing. I can suffer a bit if it gets me what I want. The second thought I had was “no mud, no lotus”. I like to think the adversity will make the a better person. Good things can come from adversity if it is faced with the proper attitude.

So there that is. Pep talk done. I guess I can “suck it up, Buttercup!” one more time. Shaw would be pleased.

written December 21, 2017 Continue reading “Suck It Up, Buttercup”

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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