Testing…1…2…3

Back again after vacuuming the living room and filling both the washer and the dishwasher. Starting to wonder which is worse. I have always been a little crazy but tackling some of this research stuff is, well, nuts!

“How do you know I’m mad?” said Alice.

“You must be” said the Cat “ or you wouldn’t have come here.”

Now that THAT is settled….the article, Clinical Endpoints, etc. talks about how using spectral domain OCT can even predict where GA will spread in your macula. With no way to stop it, I might want to be ignorant of where the condition will hit next, but the authors opine being able to discover new biomarkers may indicate new directions for therapies, something we want to hear.

The article then moved over to the wet side of the street. I only had testing for wet AMD one time. They shot me up with ‘carrot juice’ aka beta carotene, and then used what was probably either fluorescein angiography or indocyanine green angiography to look for leaks.

Back to a more general discussion, did anyone ever put electrodes on your corneas and shine a light in your eyes? Multifocal electroretinography measures the strength of the signal coming off your photoreceptors when exposed to light. And I am just full of bad news today, but there appears to be a diminution of the signal strength even in early AMD.

We have talked at some length about dark adaptation and contrast sensitivity. We even mentioned the contrast test they talk about, Pelli-Robson. Allow me a moment of satisfaction for that one🙆.

On to one I never heard of: microperimetry. This test put stimuli on very specific parts of your macula and you hit the old button if your see them. Your fixation point is monitored so if you “cheat your sweet patootie off” like I do – in other words use eccentric viewing instead of putting my poor, ravished fovea on the target – they will know.

Other than suggesting where on your retina you can actually put your eccentric viewing, the ‘maps’ from microperimetry also give an idea of where the atrophy is going to spread. Not that I want to know perhaps. And even more bad news is the study quoted found even functional macular tissue was compromised.

I think I need to stop reading this cursed study. It is depressing!

Okay, the last section of the article talked about quality of life. Finally, back to my neck of the woods. Remember: social scientist here.

And some last thoughts:

It is just fine to put problems you cannot solve away until you actually have the resources to deal with them. In DBT (and no, I have not forgotten about that) it is called pushing away. I share good news and bad. It is up to you to pick out the things that are helpful and put away the information that is not helpful or depressing. Even the depressing findings add to our knowledge base and lead us towards treatments and maybe even a cure. Let the researchers deal with the depressing stuff.

“I don’t focus on what I’m up against. I focus on my goals and ignore the rest.” – Venus Williams

October 8th, 2017 Continue reading “Testing…1…2…3”

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Practice What I Preach

At present I am waiting for the van….again. These pages seem to turn into one big tirade about the truly crap public transportation we have in this rural region.

I got up to get a 6:54 am van to work (having told them I need to be there at 8:30) and I just got the call it would be another 45 minutes until they arrive. Really?!?!? This is on top of being told they could not bring me home Saturday because my seminar is in another zip code, 5 miles away.

I am angry. I am frustrated and I am resentful. Resentment is defined as bitter indignation. It implies unfair treatment.

From the complaints I have heard from the other people who ride the vans, I suspect I am not being discriminated against. Everyone is getting the same lousy treatment. Just the same, it is not fair!!!!!

Yes, I know fairness is an illusion. I know resentment is, as published in Psychology Today way back in 1995, futile and destructive. I am aware my resentment is most likely disproportionate to the damage that has been done.  I am still pissed!

Psychology Today goes on to talk about how resentment is based on internal need rather than external circumstances. If I did not believe I DESERVED better treatment, would I be as resentful? I would say not. I am arrogant enough to believe good things should come to me almost all of the time. Having those ‘shoulds’ in my head sets me up to see things as unfair.

Resentment gives us a target for our frustrations. “This damn transportation company is to blame for my life not being easy! I could do so much more if I only had decent support!” Resentment allows us to forget that while things are caused, sometimes we are not staring at the cause face to face. Things could have been set in motion a long time ago. Your ‘injustice’ may be just another domino ,’victim’ not the agent that set things in motion. Easier to assign blame to what you can see.

So, recognizing that venting my spleen (who said THAT, anyway? Shakespeare?) at the van people may not be productive, I went online and found a couple of articles. PsychCentral.com pushed the empathy angle. Remember “walk a mile in his shoes”? It helps to look at the other party’s viewpoint, their situation. Are they doing the best they can under the circumstances? Psychology Today suggested something’s that sound, well, rather DBT-ish. They suggest you observe your resentment and sit with it for a while. They also suggest relaxation and self-care.

DBT as one-step shopping?

If I actually try to practice what I teach, I would have to admit rehashing all of the nonsense with my transportation situation is not being mindful in the present. The only thing I can deal with is the now. I should also practice some gratitude. Do I have a lot of freedom because the system exists? Yep. May not be exactly the way I want it to work, but it works…sort of.

So, in consideration, perhaps I should be a bit more tolerant. Deep breath…I feel better now. Thanks for listening!

written 9/22/2017

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No Brainer

I have not been able to get my act together all weekend. I have had low motivation and not a lot interests me. Depressed? Not exactly.

To ‘fess up’, I must admit what I have been doing all weekend is listening to an audiobook. I have been sort of ‘into’ Kellerman’s The Golem of Paris which I discovered is actually the second in a series. Now I have to listen to the first one!

My head has been full of the legend of the Golem of Prague and the Book of Enoch (weird, I know, but I kid you not. They are integral parts of the story line.) But what if my head were full of worries and hopelessness and dread?

I would not, by a long shot, be alone. PsychiatryAdvisor reports 57.2% of older people with vision impairment have depression. That is up from 43.5% of older people without vision loss. If those numbers are accurate, half of you folks are depressed. Crap. This is not good!

Some of this will be a recap, but I like to think it bears repeating. For example, I want to repeat gradual vision loss or loss in one eye but not the other is very anxiety producing! Where do you think the saying “waiting for the other shoe to drop” came from? Waiting for something bad to happen ain’t good.

Then there is the interaction between loss of everyday competence from vision loss combined with the loss of everyday competence from age-related cognitive decline. There is a one, two punch! Facing loss of independence from that combo is depressing.

This combo leads me right back to what I have preached and preached and preached some more. Exercise helps to keep you sharp. Learning and using low vision strategies and technology helps to keep you competent. Sharp, competent people keep their independence. Independent people are less likely to become depressed. End of lecture once again.

The second installment of the article starts with what I consider to be a ‘no brainer’. To wit, if you can save your vision, you can help save your mental health. Like I said, no brainer. Go for your shots. Investigate changes in your vision immediately. Hard to get more basic than this.

Next the article talked about using your low vision skills and technology and a little thing called behavioral activation. What behavioral activation basically is is getting back into life. Too bad transportation is a pain in your sweet, little tushie. If it gets you to your activities – even an hour and a half early – use it. Swallow your pride and ask for a ride. Remember Cabaret? “What good is sitting alone in your room?” Good for depression! Instead,”go taste the wine! Go hear the band!” I bet Liza Minnelli never realized she was a behavioral activation therapist😋.

There are several paragraphs on what psychotropic medications NOT to use when you are depressed. I think those deserve more research and their own page. For here, just remember, question your doctor about the vision side effects of EVERY medication you are prescribed. You are your own best advocate.

OK, I have nagged you enough for one page. What did mother say? “I only do it for your own good.” Me, I’m going back to my book. Did you ever hear of the Golem of Prague?

written August 27th, 2017 Continue reading “No Brainer”

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Overcoming Uncertainty

Medical treatment is a very uncertain proposition. Writing for the Journal of Graduate Medical Education Wray and Loo quoted Sir William Osler as saying “Medicine is a science of uncertainty and an art of probabilities”. The authors report that rarely is evidence of benefit totally clear-cut when a treatment has been administered. Also, it is rare for practitioners to agree totally on a treatment.

Sometimes opinions are expressed in such a robust manner by both that the patient is left in a quandary. How are we supposed to know who is correct? What are we supposed to do now?!?!

Wray and Loo suggest doctors (and others) look at the evidence. Is there evidence suggesting one treatment is superior to another? What does the research say?

Lin and I are big on research. The truth will be seen in the research. Notice I used the word will, future tense.

Work being done on AMD causes, treatments and maybe even cures is in its infancy. Like all infants, things are subject to change. The infant with blonde hair and a little button nose who you think looks just like your father may grow up to have brown hair and a ‘beak’ just like his uncle on the other side of the family! Final results subject to change without notice. Wait and see.

So many doctors don’t like to say they don’t know. Wray and Loo say it is a mark of professionalism to be able to discuss the pros and cons AND the uncertainties of a treatment, but how often does that happen? Maybe there is not enough time. Maybe they are uncomfortable being fallible. Maybe they think we can’t take it.

Wray and Loo talk about the emotional burden of uncertainty. Uncertainty is nerve-wracking. Many of us feel better believing any plausible nonsense than being told there is, as of yet, no answer.

The problem with believing strongly in something uncertain just so we HAVE an answer? When you find out your life-preserver is actually a cement block, you are too invested in it to let go!

How to handle uncertainty. I actually had to smile because when I went online what I found was totally in line with DBT.😉 If you want to go back to the DBT pages, have at it.

Travis Bradberry, a positive psychology proponent, shares 11 Ways Emotionally Intelligent People Overcome Uncertainty. Bradberry tells us our brains are hardwired to react to uncertainty with fear. He quotes a study in which people without information made increasingly erratic and irrational decisions.The diagram Bradberry showed was a brain and his caption said “uncertainty makes your brain yield control to the limbic system. You must engage your rational brain to stay on track”. Sounds three states of mind-ish to me.

Beyond that, Bradberry suggests calming your limbic system by focusing on the rational and real, being mindful of positives, taking stock of what you really know and don’t know, embracing what you cannot control (also known as accepting reality), focusing on reality, not trying to be perfect, not dwelling on problems, knowing when to listen to your gut, having a contingency plan (what I have always called plan B), not asking what if questions and – guess what! – breathing and being in the moment.

Hope this helped some. Remember this journey is not a sprint, it is a marathon. In fact it is a marathon that we don’t even know the course. Keep an open mind and don’t latch onto anything out of fear. Eventually we will find the way.
Continue reading “Overcoming Uncertainty”

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Everyone Into the Pool

Once more a misadventure got me to thinking about ‘things’. I got out kayaking a little bit today. Coming in, a gentleman was trying to help me and I hurried a little too much. I hurried myself right into the drink!

Not a serious problem. I was only a few feet off shore and there were people there. I am still a decent swimmer. Made me wonder, though. Do blind people swim in open water?

VisionAware, a part of the American Foundation for the Blind, strongly recommends the buddy system. In fact their article calls swimming with a partner a ‘must’. If you get separated in the surf, swim in the direction of the waves. Listening for sounds can help a visually impaired swimmer get to shore. If there is any vision left, buildings, flapping flags, and lights can help with orientation.

The people at AFB much prefer we swim in a pool or body of water that is confined and not awfully large. In the end that, again, generally means a swimming pool.

If my pool ever gets its new liner (tomorrow? It was 92 degrees Fahrenheit without a cloud in the sky today!) I could string a lane divider to keep me from going all caddywhompus. I could also put a bright-colored beach towel or other marker at the end so I don’t swim right into the wall.

If you are a competitive swimmer as I am not, you can use a person called a ‘tapper’ to touch you right before you hit and to signal the flip turn. Counting the average number of strokes you make in a lap is good for non-competitive swimmers but will slow down those who are competing.

If you haven’t considered water exercise as a visually impaired person, maybe you should. Swimming is great, aerobic exercise for young and old. Classes in water aerobics and even just swimming can provide great opportunities for socialization. Also, remember mastery as a wonderful emotional regulation skill a la DBT?

Learning to swim or even just getting up the guts to get into the water after a vision loss, is a serious accomplishment.

Once again our friends across the pond are putting some cool stuff out there. Britain has an organization called British Blind Sports, at britishblindsports.org.uk, of course. Their visually impaired friendly swim program sounds exciting. They offer a whole training program for coaches. This program also includes information for qualifying for the Paralympics.

Once more I looked for program serving us ‘mature’ folks and found mostly stuff for kids. If you are near a YMCA or a JCC (Jewish Community Center) with a pool, call and ask. That brochure with training ideas from British Blind Sport could be a resource for a swimming instructor with no experience with the visually impaired.

Remember the more fit you are, the healthier you will be. The healthier you are, the longer you keep your independence. Water exercise can help you to achieve these goals.

Now, everyone into the pool! Continue reading “Everyone Into the Pool”

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Some Learning to Do

Good morning. Mildly frustrated….again. Suspecting this is the usual state for people with vision loss in the ‘mature’ years (and whom, exactly do we think we are kidding with that ‘mature’ business?😎)

The online dictionary gives the definition of frustration as “the state of being upset or annoyed especially because of the inability to change or achievement something”. Yep, that’s me. Upset and annoyed.

I miss my freedom and flexibility of movement. I want to be able to go where I want to go and do what I want to do when I want to do it. And I don’t want everything I do to be such a damn project!

I got back to hip hop this week after three weeks of missed classes. Variety of reasons. But then Tuesday I ended up staying home because I had gotten the feeling I had overstayed my welcome with that ride. (Take the hint, girl!) Wednesday I was going to ride my bike to yoga in the park but I got out of work too late. Tonight I tried a different class, one the Y is offering in place of yoga, and really did not like it. Honestly! Niggling little frustration after niggling little frustration!

Then, of course, I feel guilty. I had arranged for transportation, but two people inquired how I was getting home. Either of them would have volunteered to bring me home. That is not a requirement. They are kind. How can I be so frustrated when I am surrounded by kind people? What is wrong that I cannot appreciate what I have?

Summer plans are starting to formulate. I am one of the most fortunate people I know because I have people willing to take me to yoga events, blues festivals and even into ‘The City’. [New York City, that is.] Am I thinking of that? Of course not! I am thinking about how I am going to finagle transportation! How can I get to the kind souls so they are not driving so much? How can I be less of a burden?

When I start thinking this way I start to get very willful. I dig my heels in and say things to my husband like “Fine! I don’t care! I will walk!” Yeah. 20 miles in the snow uphill…both ways. Problem is: I would actually try!

In DBT the question to ask someone who is being willful is “What is the threat?” What is it you are defending against when you dig your heels in and insist things be your way? Pretty good question because dollars to donuts I am defending against something!

In my case, I think I am defending against the loss of my lifestyle. The loss of my identity. Realistic fear? Certainly not for a couple of confused weeks. Best to let the dust settle. See how things shake out to use one more of my colloquialisms.

Of course, my style tends more towards blunt force than patience. I don’t totally embrace everything I teach. Apparently I also have some learning to do.

Written June 10th, 2017

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The Art of Asking

Today was a sad day at school. The teacher who had been battling cancer for the last two plus years passed away.

I have been teaching DBT long enough now, the DBT-ish thoughts come unbidden. First though is about meaning in pain. Some people wonder how you can have meaning in a life full of pain.

The answer according to Viktor Frankl and others is this: the meaning in a life full of pain can be in the way you endure. Fortitude? Grace? Style? Call it what you will. This woman did it with class.

The other thing I thought about was the comparison skill. The mother of young children diagnosed with terminal cancer? She could have handled this low vision thing with one hand tied behind her back! What am I complaining about? I’m lucky!

And another reason I am lucky? Back to I have people and my people are great. Since my ride home and this woman were friends, she went home early. Before I even knew I was down one ride home, the secretary had called my backup ride for me and I was back in business. Love you guys!

Taking me to what Lin wants me to address: asking for help. She informs me a lot of you folks are not loud, forward pains like I am. I am supposed to talk about how it is done…and not like a loud, forward pain, either.

Remember do as I say, not as I do? We are going to go over asking nicely.😇

Lin sent an article by a woman who asks for things for a living. She collects money for charity. I am going to use her Art of Asking as a loose guide.

Know what you want and why you are asking

The author suggests you know what you want and why you are asking. Essentially it should be important to you and other people should be able to see that. Frivolous doesn’t cut it. If it doesn’t matter to you, why bother people?

Ask for things from people who share your interests

I ask for things from people who share my interests. Not only do they ‘get’ I will go nutz if I don’t get to yoga, they are often “going my way”. (Bing Crosby, 1944, and available for free on YouTube!)

Ask directly for what you want and be specific about the expected cost & effort to the person

The author also suggested asking directly for what you want and being specific about the expected cost and effort to the other person. Don’t drag people out of their way and be understanding and flexible about their needs if they take you out of your way. With my ride home from school I have gone to pick out a train set, to the garage and to the chiropractor. Since she needed to go, I went along. She was doing me a favor, not the other way around.

As I said before, my school ride home lives ¾ of a mile away. My backup ride is about 1-¼ miles away. If I know someone lives on the other side of town, I refrain from asking except in an emergency.

Social media can help by asking a small group of people

I am not on social media, but social media has helped in getting my needs met. It has already happened that a usual ride had to back out but ‘advertised’ successfully for a sub. Asking in a small group can get people talking and generating solutions. Sometimes a total stranger will step in to help (just make sure SOMEBODY can vouch for him or her).

Give alternatives

The author suggests giving alternatives. There is more than one way to solve any problem and personally I have found people are more receptive to helping if they see you making the effort too. When I go to my third job, transportation will take me half way. Rather than run someone all the way to pick me up, I make arrangements to get to the halfway point on my own.

Don’t be afraid to get told no

And the most important thing of all? Don’t be afraid to get told no. The author points out not asking guarantees a no. I want to point out graciously accepting a no does not burn bridges or make people feel uncomfortable about being a ‘bad’ person. Most excuses are not excuses at all; they are reasons. Recognizing other people have obligations and needs can only be a positive in the long term.

End of tutorial.

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