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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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.
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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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A Stuffed Black Dog

I am practicing my DBT skills on myself today. Today was the day I was supposed to get a new pool liner. Supposed to being the operative words.

I have spent several years trying to extend the life of the old liner with gorilla tape! That one was always a bit of a debacle. I picked an installer at random – and did not find out he had been driven out of business three times before that until I was having problems. (Note to self: research tradesmen!) When hurricane Ivan came along and pushed up the bottom of my pool, I was not able to get a lick of help from that guy. My pool bottom had lumps with wrinkles radiating in all directions. I was dreaming about GIANT spiders living in the pool!😱

But that is not why I am practicing my DBT. Today was supposed to be sunny and 80 °F. It is 56 and raining. My pool is drained and there will be no new liner for a week. Frustrated, but it is what it is. No controlling the weather.

Also, why ruin right now thinking about the swamp smells that might (face it, probably will) be coming off the pool until we get the new liner in? My fussing won’t make it smell like roses!

One of our readers/member of our Facebook group recently sent some comments about her first injection for wet AMD. When I read what she had written, I realized in some ways she had practiced DBT! Other ways she needed a little reminder to do so.

The reminder first: the days before her first injection our reader spent a lot of time worrying and fussing. After she had her shot she was sort of upset with herself because it had not been as bad as she had envisioned. She had wasted a lot of time being in a tizzy about it all!

Yep. My pool may not stink as much as I believe it will. The only way to find out is wait and see…and don’t waste time and energy worrying about it.

Reality dictated our reader had to have her shot. Otherwise there would be bigger problems. Reality says I am going to have a swamp in my backyard. No avoiding it. Might as well accept it will happen.

Both our reader and I know what caused our respective messes. She has ‘bad’ genes and my pool guy got a bum weather report. But even knowing what happened, the causes are not under our control. No sense fussing or saying it should not be happening. Better to practice ACCEPTS and get through it. [Lin/Linda: Click here for one of Sue’s pages on ACCEPTS.]

And you know what I loved? Our reader practiced a self-soothing skill through touch! She took a stuffed animal (a stuffed black dog) with her to help her through.

Another DBT skill she used (whether she knew it or not!) was effectiveness. That stuffed animal may not have been a ‘proper’ thing for a grown woman to have, but who cares? It did its job and helped our reader through. Remember effectiveness is all about doing what the situation calls for even if custom (or snobbery!) says it should not be done that way. [Lin/Linda: Click here for one of Sue’s pages on effectiveness.]

So, thanks to our reader for letting me use her comments in a teachable moment. As for me, no sense sitting around waiting for the pool to stink. I am off to Walmart. Continue reading “A Stuffed Black Dog”

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Turn Your Mind

Hello, there! Good day today.

I taught class this morning. What started out as a four man, teaching team – two on for 12 weeks, two off – is now down to two people. Looks like my colleague and I are teaching until further notice. There is a DBT teacher training in the Fall and we are strongly ‘encouraging’ some of the younger folks in the office to take it. Really cannot have no depth in our teacher pool. My colleague has already informed me – should I have a huge drop in vision – she will lead me into our classroom white cane in my hand☺. I would say it is nice to think I would be missed but I believe it has more to do with not wanting to abandon the DBT program😘!

Taught radical acceptance today. Made the point it is radical because it involves a huge shift in a lot of core feelings and beliefs.

You don’t accept being someone who is visually impaired over lunch, for example.

That will bring us to radical acceptance being an ongoing process. You remember: “every day in every way we are getting better and better.” Every day we accept a little more of our new identity and the ways we now have to live our lives. It is an incremental thing.

And THAT brings us to turning the mind. [Click here for one of Sue’s past pages about turning the mind.]

I remember graduate school…many, many years ago, but I remember it! There was a diabetic kid living on the ground floor. Every week he would smoke marijuana and get a massive case of the munchies. After eating a couple of bags of snacks, this kid would go into a diabetic crisis and someone would call the ambulance. Rinse. Repeat.

This kid needed a good dose of radical acceptance. (He also probably needed a kick in the ass, but that is another page.) He was not like the other college kids. He could not drink and smoke and eat like them. Not and live to tell the tale, at any rate. That was a fact that was not going to change but he did not want to accept.

Part of the problem was he was in an environment surrounded by other kids all doing what he could not do. He was faced with the choice of going along (and just about dying) or abstaining several times a week.

Turning the mind is deciding to make the appropriate choice….again and again and again ad nauseum. Every time you have a chance to either accept your situation or reject it, you have to force yourself towards acceptance. There is no “just this once” or “I will do it next time”. The situation this kid was in may not have given him a next time.

Life is going to give you lots of opportunities to reject your ‘new reality’ and doing so is very tempting. But in the long run will not accepting reality change it one little bit? I suspect the truth will remain what it is whether people believe it or not. It will still be there to deal with, so you might as well get started. Turn your mind towards acceptance. Continue reading “Turn Your Mind”

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