macular degeneration, macular, diagnosis yoga – My Macular Degeneration Journey/Journal

In the Moment

When it rains it pours. There really can be too much of a good thing.

Right now I am pretty much awash in interesting possibilities. My yogini and I are planning a six-week program applying yoga and mindfulness to mental health issues. At the office we are in the beginning stages of negotiating with a county agency to provide psychological evaluations. Lin and I are exploring options that have been presented to us to share our AMD knowledge and writing skills beyond what we do currently . My husband and I head to Ireland in April. Whoa.

In other words I think about the future a lot. I sort of live in the future.

So what are I doing now? I am lying on the bed with a dog stretched over my stomach. I am writing this page and thinking about taking a nap. I am cold and tired after a busy morning and it is time for a break. Time to be in the now and let the future take care of itself.

For many of us, being in the now – being in the moment in DBT speak – is extremely difficult. I know many of you live in the future in a rather negative fashion. We get a lot of “what if” comments. What if I go blind and can’t do x, y or z? What if they take my license? The world is full of what ifs that have not happened yet and may never happen. Yet we allow these thoughts to destroy perfectly acceptable nows because we worry and fret.

I have preached mindfulness here and at the office and have been told it is “impossible! I can’t do that!” dozens of times. I beg to differ.

In yoga – yes, again – there is a thing called a Drishti. A Drishti is a focus point you can use for balance. If I am doing a balance pose I have learned to find a stable spot in front of me and stare at it. With my vision I often use the little red light on the sound system speaker. THAT I can see!

Of course, balance challenged as I am, my Drishti often becomes a drifty, but that is neither here nor there. Having a point of focus helps maintain balance.

As it is on the mat, so it is off the mat. Having a point of focus in life helps to maintain balance as well. This can happen at many levels.
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At the simplest level is something like focusing on petting the dog. Or the cat if you must. If you get a little drifty and start worrying and fretting, bring your attention back and try again. Focus on the soft, warm fur and just keep petting with attention, not automatically.

At a deeper level, think about everything you do, and do it with both intention and attention. Perform old tasks with the same focus you used when you were still learning. And be cognizant of your goals. What are you trying to do? Rinse the sink? Don’t just slosh some water around! Think of whether or not you are getting it clean. Focus. What is your purpose in this action?

So that is that…and yes, I know there is a difference between what I am planning for in the future and what you are worrying about. Planning versus worrying? By George, I believe I just set up a segue to my next page!

Catch you later!

Written January 19th, 2019

Next: Worry vs Planning

A Minor Epiphany

Not exactly on assignment right now. I want to run something past you…

Every once in a while, the stars align. The penny drops. Whatever metaphor you wish to use, I have a minor epiphany. OK, wait for it…(sound of penny dropping)!

It is the beginning of a new year. Everyone is making resolutions that will be promptly broken.

Actually, make that nearly everyone. I gave them up years ago. Resolutions are rather superficial phenomena. They generally get us nowhere…except, perhaps, for giving us guilt for not being able to stick to them. [Lin/Linda: I’ve given them up for the same reason!]

Also, since I have been teaching dialectic behavior therapy (DBT), I have come to realize resolutions are very judgmental. They wag their fingers at us and point out – repeatedly – how we need to improve. Is it any wonder most people want to part company with resolutions as soon as possible?

Add to the concept resolutions are judgmental, and ergo ineffective, two other things. One came again from DBT and the other came from yoga class. Yep, two of my favorite sources of things to ponder once again.

DBT has added values clarification to what we are to teach. Many of my clients have a lack of direction in their lives. Being able to define their values can give people direction. I have been pondering how I want to squeeze values clarification into an already crowded agenda. Values have been on my mind.

Add to that the “lesson” we had in yoga this morning. We were taught a little about sankalpa.

According to Catriona Pollard writing for MBG, sankalpa is intention. It can be as simple as one word, the affirmation of a value you want to include in your life. Having this intention and keeping it in your mind every day will help to manifest it into reality. Instead of putting yourself on a path of denial and pain, you are putting yourself on the path to growth.

Sankalpa allows for acceptance of faults. It allows for compassion for the self. It allows for slow progress.

Identify your value. Manifest it in one, simple act a day and you are on your way. Hey, it worked for the Cowardly Lion. What other testimonial do we need?!?

What value/virtue do you want to manifest in 2019? Do you need compassion for yourself when you fumble with something? Practice loving kindness with your mistakes. Do you want to be brave in the face of vision loss or frightening treatments? Tell yourself you are brave and then walk the walk as well as talk the talk. Manifest your values through a simple act everyday and you will find you possess that virtue. Not bad. Not bad at all.

So there is my epiphany for today. What do you think? Hopefully it will be one more way for you to find your way through the travails associated with vision loss. Personally, I like it a lot better than resolutions for giving up chocolate chip cookies and ice cream, but that’s me.

Catch you later!

Written December 31st, 2018

Next: I’M BORED – AGAIN

An Exercise a Day

Hey. It is Sunday. I have changed bedding, mopped the bathroom floor, done dishes, done laundry and written most of a psych report (why don’t people look on the backs of checklists?). I have HAD IT. No mas. Break time. The sun is shining. It is around 75 degrees outside (screwy weather) and I am heading for the deck.

Sunday has become my work around the house day. Monday it is back to the real world and if I want to get anything done at home, it has to be done Sunday.

Heaven help me when I am no longer working and don’t have the press of deadlines. Nothing will ever get done!

Feeling good about getting a pup. We picked the lively and inquisitive one. I know she may be more of a handful than any of her sisters but I need a walking buddy. I have been “going to walk the dog” for more than 60 years and going to walk by myself feels wrong.

Bringing me to the promised topic, as well as the promised nagging ?. Exercising is great for avoiding depression!

We have talked about the crazy percent of older people who are depressed and the even crazier percent of older VIPs who are depressed.

Right now many of us are not going to improve our visual standing anytime in the near future. Gotta live with that. That leaves us with fighting the second dragon, depression.

Our friends whom we have not met yet in Nord-Trondelag county Norway have been participating in a huge, as in HUGE, longitudinal health study that started in 1984. One of the things they were measuring was the relationship between exercise and depression. To begin with they found an exercise a day keeps the psychiatrist away. Those who did not exercise at the start of the study were 44% more likely to develop depression than exercisers. Total amount of exercise and depression were negatively correlated (more exercise went with less depression). However, they also found as little as one hour of exercise a WEEK reduced chances of depression by 12%!

Similar studies in Sweden and the United Kingdom found similar results. The benefits of exercise were seen in everyone, including older folks, and the intensity of the exercise did not matter. Easy was OK. Small doses were OK. The idea was to move.

Of course – pushing my luck with some of you; I know – aerobic exercise and focused attention meditation twice a week has been found to improve depression in two months or less. That research comes out of Rutgers. The Rutgers study sequenced the two, one after the other, but it is possible to get both exercise and focused attention in one activity. I am talking about the Eastern practices such as yoga and tai chi.

OK. End of lecture. Just hoping to find one convert out there somewhere. It really does work. Any brave soul out there who wants to try it? All you have to lose is your depression.

October 22nd, 2017 Continue reading “An Exercise a Day”

Don’t Believe Everything You Read

Friday evening. I have things I should do. Constructive things like cleaning the bathroom or writIng a report. Or studying the book for the home colon screening test.

Yep. Back to poop. I really need to ‘study’ for that ‘test’. Of course, my husband told me he took it and aced it. All the answers are number two!?

So much for the potty jokes, but I really could not resist sharing that one!

So, yeah. Things I should do but I am not doing them. When I got home I flopped down and watched Hawaii Five O on my iPad. It is great because of the relative distance thing. I can actually see the screen!

Then I checked my email and Lin had sent me an article about how yoga inversions are bad for us with AMD. Alrightee then. Let me move off from there.

After I scanned the article, I went to Google Scholar. I searched about six pages of references for yoga and macular degeneration. I did not find a single description of an article that sounded like it found yoga inversions bad for AMD. Not one. In fact, most of the articles I scanned sounded as if they were touting yoga as a great thing for the visually impaired.

The reason I went to Google Scholar? Because it helps you find the research. Everyone has an opinion but unless he can back it up with facts, don’t believe him! An opinion is no more than that: an opinion. That and $1.25 will get you a diet Pepsi. (I don’t drink coffee and have no clue how much a cup of joe really costs.)

The articles I saw that said don’t do inversions were on the general web and by the same person. He offered no substantiating data. His evidence, if any, appeared to be anecdotal. Anecdotal evidence is great for helping us generate some working hypotheses but to declare it as true, we need experimental proof.

I guess the lesson I am trying to impart is don’t believe everything you read in the papers. There are all sorts of opinions and theories out there. Some of them have a lot of face validity and seem as if they are true. That doesn’t mean they succeed when they are tested.

Once again, we try very hard to back up what we say here with research. If I go off the reservation in my speculations, I will tell you. “I don’t have a clue what I am talking about. Unsubstantiated opinion here!” One should never pass off her opinions as gospel.

Speaking for myself and myself alone, I am not quitting yoga even with inversions. There is no substantive evidence offered for the claims. I love yoga. I have improved strength, flexibility, endurance and even balance (eternally balance challenged; that’s me!) I love the challenges. I love the socialization. And that is that.

And now, I have found another use for my magnifier reader: DIY home surgery! There is a splinter in my foot. Can’t see it naked eye but on 9x it is a tree trunk. Nurse! Tweezers!

Written October 21, 2017 Continue reading “Don’t Believe Everything You Read”

No Mud, No Lotus

 

No mud, no lotus
Yesterday the theme for our yoga practice (and remember it is yoga practice not yoga perfect. There is nothing in life we ever truly perfect. We are all seekers and strivers) was “no mud; no lotus”. Cool. A page topic.

 

 

Traveling in the yoga and therapy circles I am in, I have heard that saying a thousand times. It makes a great poster. Lovely, white lotus flower growing out of a bog. Beautiful. What does it mean?

Literally it means exactly what it says. The lotus, sacred plant of India, is aquatic. It roots in the mud and makes its way to bloom on the surface. Without having its roots in the mud, the plant would perish. (Or perhaps not. Fun facts: Wikipedia reported the oldest living lotus known is over 1,000 years old and Kew Gardens reported the oldest, germinating lotus seeds were 1,288 +/- 250 years old!)

Metaphorically, no mud, no lotus is about rebirth and emerging from darkness and a ‘bad’ place (BuddhaNet). It symbolizes rising above the defilement and suffering in life. It is a way to represent hope and victory over bad circumstances.

Please note the ‘bad’ circumstances are still there. No one drained the swamp. There would be no lotus if the swamp were drained. The ‘bad circumstances’ of the swamp are necessary for the lotus just like the conflict is necessary for the victory. No conflict, no victory. Got it? We need adversity in order to prevail.

And THAT is one of the moral of the story. We don’t grow because of the ease in our lives but because of the challenges.

I looked up no mud, no lotus and found some intriguing references to a book by a Buddhist monk named Thich Nhat Hanh. BARD does not list it or I would have downloaded it. According to other sources Thich – or should I say Hanh? – sees acceptance of suffering as the first step to happiness. It is not possible to fully experience one thing without knowing it’s opposite. Ying and yang. You can only appreciate the light if you have known the darkness. And that is the Zen take on the saying. Pretty profound in its simplicity.

I leave it to you to decide how no mud, no lotus might apply to your life. Has your AMD made you grow in any way? Are you more appreciative of your vision or of things you are still able to do because you have glimpsed a future without good vision? Has anything good come of your having AMD?

And if the answers to every one of those questions is no, I am going to ask why not. Perhaps now is the time to embrace your condition and make it work for you. No mud, no lotus. Continue reading “No Mud, No Lotus”

Third Chakra

It seems to be motivation week. The BARD book I was able to find by the second author my nephew suggested is entitled “Drive: The Surprising Truth About What Motivates Us” (No clue. I have not downloaded it yet; it’s also available on amazon.com) Then in yoga my yogini had us concentrating on the third chakra. The third chakra is said to be concerned with a sense of purpose and self-motivation. OK. THEN I was accused of lacking motivation in seeking treatment for my AMD! Really?

I sort of get it. How many diseases can you think of that not only have no cure but no real treatment? (Wear your sunglasses and take your vitamins???? What kind of treatments are they? Where are the pills? The funny machines?)

If people cannot fathom there really is no treatment, how can they understand we are not getting treatment? Not going for treatment? Just obviously unmotivated, we are.

And then you tell them you have been waiting for over a year to get into a clinical trial and they really think you are crazy. Why have you waited that long? You just march right in there and tell them you are going to be included in this! Why aren’t you motivated to get this taken care of?

So, perhaps I have not been forceful enough.  Perhaps they just have not noticed me and they are gathering up more motivated candidates. Perhaps I have my approach all wrong.

I have been asking around and doing my research. I have a fellow yogini who works at a research hospital. Totally unrelated body part, but the ways research progresses should have parallels; right?  She is going to ask about the flow of these things. Are their trial subjects more aggressive? Does it take those researchers forever to get their stuff together and get it on the road? Inquiring minds and all that.

I also went onto that purveyor of all things known, the web and particularly Wikipedia, and looked up recruiting for clinical trials. According to dear, old wiki, the recruiting business is a billion dollar venture. Recruiting is the most time-consuming aspect of research and is responsible for the failure to meet many, many clinical trial deadlines.

All of which begs the question: why are they not calling me? I am certainly not playing hard to get!

All the other materials I turned up on clinical trial recruiting were of the same variety. Those articles talked about the problems finding people who are willing, able and appropriate for participation. While I feel their pain, my problem is the opposite. I want to understand why no one is calling me. Is there a handbook for this somewhere? What is proper etiquette for seeking a position as a lab rat? I have NEVER had this much trouble landing a job!

So, no, I am not unmotivated.  My third chakra is working just fine; thank you. I am playing a game to which I do not know the rules and I am afraid of pushing too hard. People don’t pick shrinking violets but they don’t pick prickly people either. Anybody own an old rule book for this stuff? I could use a little guidance.

Continue reading “Third Chakra”

Technical Difficulties

Hi! Taught my first class today. First DBT class since my vision loss. Took a lot more preparation and set up, but then preparation seems to be the name of the game for the visually impaired.

I had gone over my notes and had what I was going to teach in mind. Made sure I had all my tools and materials and everything was in order. It is sort of hard to wing it or to keep talking and rifle through your notes when you have to bring things to your nose to see them! Rather hard to be casual about that.

Of course there were technical difficulties. True to my word,  I fumbled with putting the CCTV camera on my students and then back to my notebook. I got some help with that.

There really are many kind people in the world.

Of course, just to make things really interesting, when we got the camera back to the page, the image was upside down! What was with that???? It was first suggested I turn my book upside down which worked except that sliding it up it went down and sliding it left it went right. I am spatially challenged as it is so that was a treat. Someone finally suggested turning it off and back on again. Reset, of course. I should have thought of that!

I could not see the faces of my students. I had expected that. It is going to be harder to learn names. I expect they will sit in the same places anyway but I made a point of asking them to do so.

Old joke: how do you punish Helen Keller? Answer: Rearrange the furniture.  New joke: How do you confuse your DBT instructor ? Switch seats!

The lesson went reasonably well. There was a lot of participation. When I was futzin’ about with the CCTV, I had some people read the slides to me. Asking for help can be hard at times but we are all in this together. Better to ask for help and keep the class moving than fumble around. Fumbling is just frustrating. Enough frustration in this world.

All told, good class. One more hurdle behind me. I know I can teach for a while longer. Continue reading “Technical Difficulties”

Yoga for You

I start back to yoga tomorrow!!! Yippee!! Except for scattered classes here and there I have not been in yoga in months. My yogini had a baby and some legal nastiness which I will not comment on. Thumper’s mother had it right: “if you can’t say something nice, don’t say anything at all.” I am often not that kind but this is a public forum.

But yoga! First of all, yoga is not a religion and is technically not associated with any religion. Does it come from the same geographic area as Buddhism? Yep. Does it use meditative practices similar to Buddhism? Yep. But yoga is not religion.

Technically, Buddhism is not a religion. There is no deity in Buddhism. No deity? Not a religion. Learn something new everyday.

I make this point because I have known people who have shied away and denied themselves the benefits of yoga because they thought it was anti – fill in the blank with your religion. That is too bad because yoga has great benefits. Cardiovascular fitness? Check. Strength? Check. Flexibility. Check. And the one I want to talk about: balance. Check. Check. Check.

I am balance challenged. I have always been balance challenged. When the other kids walked the fallen tree across the creek, I scooted across on my butt. I sometimes wonder what my balance would be like if I did not dance and do yoga. I keep up on my practice because I do not want to find out! It is a scary thought.

According to the Center for Disease Control and Prevention falls by older adults cost over $30 billion in 2010 alone. Falls steal your independence and can lead to early death.

Why am I talking about yoga and balance and falls on an AMD website? Because falls and vision loss go together. Poor balance and vision loss go together as well. It is a nasty little triad.

Yoga is a great way to improve balance. And it doesn’t even need to be challenging poses on the floor. There are many yoga asanas (poses or position) that can be modified to be done in a chair.

You can find websites and YouTube posts of short, chair yoga classes. Unless you have a background in yoga and know how yoga and your body get along, I would not recommend them.

What I would recommend is a class with an experienced instructor. For example my yogini is a ‘500 hour’ instructor. That means she has 500 hours of training from an accredited program under her belt. That is experienced. Someone like my yogini can help you learn to do asanas correctly and help you modify them according to your needs.

Classes have other benefits. Unless you are independently wealthy and can afford private lessons, yoga classes have other people in them. Get you out and socializing. Get you laughing.

A requirement in our classes by the way. You fall out of a pose, you laugh. All of these are good things I covered in other pages.

I am impatiently waiting to get back on my mat. I will have the funniest looking balance poses of the whole class but, that is alright. This is yoga practice not yoga perfect. Having better balance is important.

Continue reading “Yoga for You”

Teacher, Teach Thyself

Do I need to even say that I was distraught? I had been struggling at work for days.   I had been lately having panic attacks. Now I knew why but knowing why had not really helped.

One thing I knew was that I had to take a leave of absence from my employment. Tearfully, I sat in the hallway at the ophthalmologist’s office and called my employers. It was not fair to my clients to do a poor job. It was not me to do a poor job. The only option was to hang it up for a while.

It was not me to do a poor job. I had to hang it up for a while.

That weekend I continued with the panic attacks in earnest. I was waking up hyperventilating with my pulse racing. I felt as if I had a rock in the pit of my stomach. This is what dread feels like.

For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.

I will go into some of the tenets and strategies more in-depth later on in my postings. Suffice it to say now, I needed to use the first of the PLEASE strategies (PLEASE is an acronym that I’ll explain below) for dealing with Emotional Regulation—the strategy is taking care of physical illness (that’s the P).

The P in PLEASE stands for taking care of physical illness.

I was in my general practitioner’s office that Monday morning. I was totally worked up. I have been up with panic attacks at least three times the night before and I was using over-the-counter sleep medication to get any rest at all. Even worse, my blood pressure was up to 182/ 81. I think this was my personal best!

After listening to my tale of woe – about going blind, taking a leave from work, not being able to drive, and, on top of everything, having my mother-in-law in intensive care – my general practitioner prescribed psychotropic medication to help me deal with my anxiety.

DBT stresses that you have to take care of physical illness in order to deal with emotional distress. I am not a big believer in medication but having a stroke was not going to help the situation.

I accepted that I needed the prescribed medication to help control my panic.

The S in PLEASE is sleep. I wasn’t doing a lot of that but I needed to. I had never given it a lot of thought but, take it from me, losing your vision is exhausting. The emotional stress of losing your vision is exhausting.  That is one thing but just trying to SEE is another. It has been taking me three and four times as long to do basic tasks like reading my mail. I have a reputation for being a high-energy-and-always-on the-go woman. It amazes me that in the last few weeks I have started taking naps.

The S in PLEASE stands for sleep.

The first E in PLEASE is proper eating. One does not eat well when she is in crisis. In fight or flight mode, the digestive process is shut down so the blood can go to the limbs. Before I started on my medication, I had no appetite and when I did eat, it sat undigested.

The problems with being in fight or flight mode were two: first this was not some short-term problem. This crisis was going to last for a while. And two, what was I going to fight? Where was I going to flee? Better to interrupt the process so I could get proper nutrition. After all, every army marches on its stomach and this was going to be a protracted campaign.

The E in PLEASE stands for proper eating.

For you curious sorts who wonder what the A and the second E are (the L is part of the word Physical; I did not forget it), I will inform you. The A is to avoid mood- and mind-altering drugs. That has never been one of my problems, but it might be a problem for some of you. Remember that drugs and alcohol work in the short run but in the long run, your problems are still there and often worse. Escaping with drugs and alcohol is not going to allow you to learn skills to deal with your problems and they certainly will do nothing for your Macular Degeneration. End of lecture.

The A in PLEASE is for avoiding mood- and mind-altering drugs. Not one of my problems but I’m informing you of it.

The E is one of my favorite things in the whole, wide world…exercise! A little autobiographical note here. I have, in at least one aspect, lived my life backward. I was an intellectual in high school and college. Never did any physical exercise that I was not absolutely obliged to do. That changed when I was in my mid-20s and discovered STRESS. The one thing that helped to relax me and let me sleep was exercise and I was born again. It is true there is no greater zealot than a convert. I will witness to you any time you like. I may also witness to you when you don’t like.

The E in PLEASE is for exercise which is one of my favorite things in the whole, wide world.

So, be that as it may, this time of the year, I generally take Zumba, hip hop, yoga and walk. Exercise is an amazing stress reliever and great for calming crazy emotions when you are in crisis. Even though my vision had gone to serious crap, I continued my classes. I have had to. Friends and my exercise have been my lifelines.

When some people hear that I am legally blind in one eye and nearly legally blind in the other, they assume I cannot dance anymore. Not the case at all. Macular Degeneration affects your central vision. If I concentrate on looking at something off-center of the instructor, I can see the moves with my peripheral vision just fine.

Even though my vision had gone to crap, I continued my exercise classes.

People also think I am not able to navigate on a walk. That’s not true either. Keeping my head up and focusing on a spot a bit beyond where I am walking, I can see what is at my feet. The peripheral vision is still there.

When I walk, I can use peripheral vision.

Then there is yoga. Sorry all of you exercise haters, but totally blind people do yoga. ‘My’ yogini is hands-on and will physically correct your alignment, etc. I have worked with another yogini who is about 100 pounds and will literally climb on you! Yoga is great for flexibility, balance, strength and even endurance and can be done by people of all ages. Yeah for yoga!

Totally blind people do yoga. Yeah for yoga!

So, trying to keep myself from being a screaming, crying basket case, I practiced what I was preaching and used the PLEASE skills from Marsha Linehan’s Dialectic Behavioral Therapy.

I also used ABC and Master from DBT. A is accumulate positives; I got out there and had fun. I walked to the park with my yoga instructor and her two daughters. I contacted a friend and went to a blues concert. These may have been just pleasant interludes that don’t do anything to help my eyes but they helped my soul.

The A in ABC means accumulate positives. I got out there and had fun.

B is for building mastery. My job is very visually demanding. I never realized how often I needed to use my eyes. My vision was there and taken for granted. Yesterday I tried to do something I have done thousands of times over the last 38 years. It was a debacle. I cried whatever is left of my eyes out. Tried again today and it was better.

Also today, I started to use Siri on my iPad for my searches. She found something I was wondering about. Minor triumphs matter and I am trying to celebrate them.

The B in ABC means build mastery.  I started to use Siri for my searches.

The C is for cope ahead. Basically, this is a positive imagery technique. What do I imagine? I see me lecturing on Macular Degeneration to Lion’s Clubs and other civic organizations. This is, of course, after I have become the most successful lab rat in the history of Wills Eye Hospital and have written a website that is turned into a best seller for people who are suffering from AMD. There IS life after your macula does a mass extinction worthy of the Jurassic period or whenever the dinosaurs ceased to be.

The C in ABC is for cope ahead which is a positive imagery technique. I imagine myself the most successful lab rat in the history of Wills Eye Hospital.

Do these strategies always work? Hell no. I want to be back at work. I want to drive. I want to read a paperback mystery cover-to-cover in a weekend like I used to. Screaming and crying, frustration and disgust have been part of my life recently and I suspect they will continue to visit. The skills may not be 100% effective but I will take all of the help I can get at this point.

Do these always work? Hell no, but I will take all the help I can get at this point.

Written February 2016. Reviewed September 2018.

Continue reading “Teacher, Teach Thyself”