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

Category: Depression

I’m stressed, anxious, depressed. How do I deal with this?

First, what you’re feeling is ‘normal’ for those who get a diagnosis of any vision-threatening disease. Some of you have been told by your eye specialist, “There’s nothing I can do for you.” That certainly can contribute to the stress of getting the diagnosis!

Research shows that stress may be a contributing factor to the progression of AMD. Even though more research is necessary, we need to be able to manage our emotional health to make better decisions and to be open to learning new and better ways to cope with the disease.

Who is Sue and Why Should I Read What She Writes?

She’s my friend of 40+ years who became legally blind (20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other) from advanced dry AMD/geographic in 2016. After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life. At age 69 and with advanced dry AMD/geographic atrophy, she works as a psychologist, attends regular exercise classes, rides her bike safely, travels locally and abroad, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and new friends she’s been making along the way!

My Recommendations

‘Advice to the Newly Diagnosed’

Since she’s written over 600 pages, I’ve collected some of them:

Sue’s other pages for the newly diagnosed and highly-rated pages

Dealing with the Emotional Reaction to Vision Loss

Stress and AMD

The article ‘Assessing the Impact of Stress on Age-Related Eye Disease’ says, “Article says, “Dougherty and colleagues also note that stress may be associated with increased inflammation and that AMD is an inflammatory disease — raising the possibility that stress may contribute to disease progression. Future research using repeated assessments with the PSS and measurement of inflammatory markers might help determine how perceived stress levels affect the risk of AMD progression and deteriorating vision”

Sue’s Best Pages – Part 4

continued from part 3

Part 4 Using the Tools from DBT (Dialectical Behavioral Therapy)

  • “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.”
  • “DBT has a technique called Opposite to Emotion. It is just what it sounds like. If you have an unhealthy emotion, act in the way you would act if you were having the opposite emotion. Behavior follows emotion but emotion also follows behavior.”
  • “One of the DBT Distress Tolerance Skills is ACCEPTS (another acronym I’ll explain). The A is for activities.  A lot of time to sit around and think about everything that is going wrong is not good for anyone. Getting out and about and – for even just an hour – forgetting that all hell is breaking loose in your life is great therapy.”
  • “Enough said on that. Besides activities and comparisons, there are five more ACCEPTS skills: contribute, (opposite-to) emotion, pushing away, thoughts and sensations (the CEPTS). This website is my idea of contribute. Contribute means doing for others. Get out of yourself and make things better for someone else.”
  • “DBT has some skills for improving the moment. These skills are good for getting through the rough patches when you are down or frustrated and there is not a great deal you can do about fixing things at that time. Conveniently, they are called – acronym alert here – IMPROVE skills.”
  • “Dialectic Behavioral Therapy (DBT) has Self-Soothing Skills that are taught as part of the distress tolerance module. You remember self-soothing? When you were one it was the thumb in the mouth and the favorite blankie. Maybe it was sitting in your crib and rocking. Right now those ways of self-soothing might not appear very appealing, but they worked when you were one. What can we old, mature folks do that will work as well without the stigma…or the buck teeth?”
  • “Back on track, DBT concepts here. I think that this situation may highlight the ACCEPTS skills. I see contributing (the first ‘c’ in ACCEPTS). 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.”

Next: Coming soon – Technology

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Life is Not Fair

I am capable of throwing one, fine pity party. Nothing is going my way. Everyone hates me, and I will never be able to cope with this! [Lin/Linda: We’ll have a little sing along about this at the end of the page. ::grin::]

There are some days I would be just as happy to retire to my bed with a half a gallon of chocolate ice cream and a spoon -don’t forget the spoon! – as well as a full box of tissue – you don’t want to get your ice cream soggy! I just want to eat myself into oblivion and cry myself to sleep. To face this all the next day…

Dry AMD is a long campaign involving loss after loss. I have been living with – surviving, tolerating, whatever – this condition for over two-and-a-half years now and it can be damn discouraging. What do you do when you are out of ice cream and have to face reality? How do we get back to an even keel?

First of all, let’s look at your physical state. Are you sleeping well? Eating well? Exercising? Taking care of illness? We all know things do not go as well when we are physically out of sorts. If you want to tolerate your vision loss better, take your allergy medication. Walk the stairs. Eat your vegetables! A fit and healthy you is a more tolerant you.

As much as we are hoping and praying and looking every day for a treatment, the name of the game right now is tolerance. How do I tolerate today? …and today? …and today? Sometimes it comes down to how do I tolerate this moment. Depends on the day.

We have talked about distress tolerance skills in other posts. They should be available through a simple search of the website. Quickly here, I want to mention avoiding a black and white attitude in your interpretation of situations. Is it really true that nothing ever goes your way and everyone hates you? Is it true you will never be able to cope? Absolutely are rare in life. If you have even once been successful in coping, that means there is a chance it can happen again. Don’t be so quick to dismiss yourself.

Interpretations are extremely important. The lens we look through upon the world is critical. Try to look at the bright side. Maybe today is one day closer to a substantive treatment, not one more day that must be endured on the way to the grave. It is all in the spin, doctor. Reinterpret and reframe again and again.

And last of all for this page, stop wasting energy fighting reality. No, it is not fair. Somewhere along the line, someone told you life is not fair. You should believe him. Bad things happen to good people and this time it was your turn. Why? Dunno. Back to Alfred Lord Tennyson, “Ours is not to reason why. Ours is but to do and die.” Make the best of a bad situation. Put your energy towards things that can be affected, not towards things that cannot.

Maybe the meaning in your suffering will be a classic poem. Could be worse.

[Lin/Linda: As promised: sing along with the video “Nobody Likes Me, Everybody Hates Me, Think I’ll Go Eat Worms!”]

Written August 20th, 2018

Next: No Train for Christmas

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Same Stuff Different Day

I have been home from State College for about 12 hours. Tedium has set in quickly.

The online dictionary defines tedium as the state of tediousness. Gee, how informative! (Sorry. Feeling snarky.) Tedious means monotonous, boring, SSDD (Same Stuff Different Day).

I have an inkling of what the problem is. State College was exciting when I hardly even got there. I was there last year. I was there in May. I will be there next month and hopefully again next year. Something I counted on to break up the monotony has become more monotonous.

In Never a dull moment by Kirsten Weir for the APA, John Eastwood described boredom as being “the unfulfilled desire for satisfying activity.” As I said before, it is not a lack of things to do, but a lack of things you want to do. Been there. Done that. Got the t-shirt. In other words, sorting laundry, and mopping floors today has not improved my spirits.

James Danckert has discovered those who bore easily may be more susceptible to mental health problems. One of these problems is depression. Although boredom and depression are highly correlated, they are separate states. Eastman suggested boredom can lead to inner focus, negative rumination being a factor in depression.

Out in the “real world” most tedium comes to an end. But what about some of us who are homebound? Being underwhelmed, as it were, leads to some behaviors we should not have. Think alcohol abuse and overeating.

There is even some evidence the phrase “bored to death” is not hyperbole at all! In a longitudinal study of British (hi, guys!) civil servants, the ones who reported being chronically bored were more likely to die young. Yikes!

So what to do about this tedium issue? Another researcher, Van Tilburg suggested bored, meaningless activities lead to people trying to generate meaning in their lives for themselves. Sometimes this can lead to negative outcomes.

The idea seems to be to find a positive purpose. What can you do to give meaning to your existence? To your vision loss? Maybe you want to sign up to call other homebound folks to check on them and chat. If you are going to engage them in conversation, maybe you should listen to some news features. Maybe you can call some people losing their sight. You might have a common interest!

Are you still living in your hometown, the town your great-grandparents lived in, too? Remember some stories you heard and record them for the historical society.

Did you miss out on instrumental lessons as a child? Always want to be able to sing without sounding like a toad with laryngitis? It is not too late. I would suspect a few phone calls could find instruction at a reasonable rate. Even a kid in a middle school band could give beginners lessons. And just imagine hearing about life through the eyes of a 13-year old.

What do I do to increase purpose in my life? Oh, I write a blog. I thought you knew! I also walk puppygirls. Bye!

Written August 4, 2018

Lin/Linda here: I am here to share a resource I found for myself when I was looking for courses in my new field.  It’s udemy.com— a school that has reasonably-priced online courses in all kinds of topics from personal development (eg. happiness, religion & spirituality, stress management, memory), lifestyle (eg. beauty & makeup, travel, arts & crafts), Music, Photography, Language and many MANY more! Many of the courses are $10.99 or $11.99, some are more expensive. They are always running sales. They’ll give you your money back if you don’t like a course which happened to me. They are very happy to work with their customers. Check them out, and let us know which courses you are taking.

Next: Where’s Your Hope?

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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”

Sue’s Best Pages – Part 2

continued from page 1

Part 2 Dealing with the Emotional Reaction to Vision Loss

  • “AMD can lead you to question whether or not you have any value. It may lead you to feel unworthy and guilty about being dependent upon others for so much. These are symptoms of depression, too.”
  • “No sense getting peeved and denying it. It is what it is and I feel the way I feel. That is the way it is. Acceptance of what is important.”
  • “If you don’t feel very accomplished or brave? Fake it! There are people watching. Be the person they will emulate during tough times in their lives. Show them what grace under fire really looks like.”
  • “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.”
  • “Many of us are facing limitations. These are limitations we don’t like and don’t want. Limitations that hit right at our independence and threaten who we are and how we interact with our worlds.”

Next: The Highest Rated Pages

 

Come Dance with Me – Again

End of a busy Saturday. The big news of the day is we met our puppy! She is all picked out and will be ready to come home to her new mommy and daddy on November 18th.

I also got back to my exercise classes. My routine will only be in place for about a week before I go running off on vacation but that is alright. Things will settle down soon after. I hope. No more ride snafus, food poisoning or adventures for a bit.

While I like a little adventure (but not ride snafus or illness!), sameness and predictable are really good. I like the familiar, too.

Such as the Eastern screech owl ‘whinnying’ outside the window. He has been there most nights for several weeks now. According to web sources, that is a territorial defense cry. Wonder what he is defending against? Apparently there is a hidden drama unfolding in the backyard!

One of the other things I got done today was going through some Healio and Medscape posts for articles. They are still publishing that Manchester, U.K. research saying eye shots cause anxiety and depression and my reaction is still “Duh! Ya think so?”

But the next things I came upon were actually related to that article – about depression and mental functioning – and gave me more reason to harp on exercise again.

I absolutely love it when things I enjoy doing are found to be good for not only physical health but cognitive and emotional health, too! It makes me feel so righteous to say I am doing it because it is recommended even though inside I know I would do it anyway. Like being told eating an entire chocolate cake with a half gallon of vanilla ice cream is a nutritious meal! Recommended at least three times a week!

Oh well, that might be a little extreme (a girl can dream; can’t she?). However, the Medscape article ‘Dancing Keeps Older Brains on the Ball’ gave me a rationale for being the ‘grand old lady’ at hip hop class as well as one of the ‘dowagers’ at Zumba.  The article talked about how the integration of info from multiple sensory sources such as hearing the music, watching the instructor and feeling how your own body is moving in space is good exercise for your brain. The researchers discovered the demands of learning new dances every week or so in addition to the balance demands of dancing literally beef up your hippocampus. The hippocampus (seahorse in Latin as I mentioned before) is your memory center and tends to shrink in old age. The researchers ended by saying “our study results suggest that social enrichment and a combination of physical and cognitive activities influences neuroprotection best”. So there!

And of course I got so excited about having a SCIENTIFIC rationale for putting on my boogie shoes a couple of times a week, I did not leave myself space to write about the other two articles I found. But good news: one of the articles on exercise and depression talks about the levels of exercise effective for battling depression and guess what? It was practically nuthin’. See? You can read the next page even if I am being a noodge!

October 22nd, 2017

Continue reading “Come Dance with Me – Again”

Looking for Answers

Lin gave me a preview of the page Nancy submitted as a guest writer. I am so glad Nancy took our invitation! Hoping that more of you do the same. [click here for Nancy’s page.]

Now, we all know I am a little ‘different’. Might as well embrace it. My immediate supervisor at school loves to tell me “You are such a psychologist!” She’s telling me I’m weird; right?

Anyway, even though I am not normal, I see parallels between Nancy’s experiences, my experiences and maybe even your experiences, too.

We are all “of a certain age”. At 64, I think of myself as a youngster with AMD but Lin tells me new Facebook members keep getting younger. What the hey is happening there?!?!? Anyway, this is not a disease of the young.

Most of us had parents or relatives with AMD. Nancy worried about developing it herself. I never did but Daddy was into his 80s when he lost his sight and his condition was never named for me. Since relatives were pretty few and far between on my father’s side, he was a sample of one for me. I never gave a thought to it being hereditary. Oops. Maybe you were not so obtuse and worried like Nancy.

Both Nancy and I have had the anxiety of waiting for things to go to hell in a proverbial handbag. One of the problems with a slowly developing condition is it lulls you into complacency and the next thing you know WHAM! No longer so complacent.

Many of us are facing limitations. These are limitations we don’t like and don’t want. Limitations that hit right at our independence and threaten who we are and how we interact with our worlds.

Then there are the attempts to combat this stuff. I went research and science. Fits me. Nancy went nutrition. Me? Not so much. Even though my ‘little’ nephew – 6’5” and possibly still growing – assures me food is the most important drug you can put in your body, I am not going there.

And in keeping with the season I just had a really excellent piece of pumpkin spice cake. What? Don’t give me grief; it was orange! Antioxidant color; right?

Back on track – but it was yummy cake! – we are all looking for answers. We are all hoping for the miracle cure. Is it coming? I truly believe so. Just don’t expect it by next Tuesday. In the age of great medical breakthroughs, you would think our little problem would be easy but it’s not. It is a frustration we all feel.

Then…the elephant in the room: depression. We have talked about it before and will talk about it again. We have all felt it. Some of us have the resources to help us bounce back. Some of us need help finding those resources. Lin said something about citing pages, etc. about depression so I am sure several of these words will be blue soon. [click here for an article about depression in people with AMD.]

What I learned from Nancy’s page? We are all having similar experiences. Nancy, probably you, me, too. So maybe I’m not so weird after all? Maybe?

written October 2nd, 2017 Continue reading “Looking for Answers”

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”

One Foot in Front of the Other

We recently had a reader ask how it is possible to maintain hope, faith and optimism, etc. when “everything” is slipping away. She stated she does not want this disease because she had watched it “destroy” others. Her friends do not want to associate with her because of the “doom” she is facing.

Oh, my…where to start. First of all, I guess I need to say “I’m with you! I don’t want the damn thing either.” But wanting it or not wanting it really does not make a bit of difference. We do not get to make decisions like that in our lives. We only get to accept (or reject, but if you fight reality, I can practically guarantee you will waste a whole lot of energy and in the end, still lose. To paraphrase “I fight reality, reality always wins!”). We also can find ways of coping.

That appears to be a magic word: cope. This is not a fatal disease. If you are still breathing and conscious, you are capable of dealing with things and trying to make them better. Your hope is in every breath you take. Breath.

Remember one of my favorite people whom I never met, Viktor Frankl, said “the last freedom left to any man is determining how he will react to his circumstances.” This disease will not destroy us. It may take things from us, but not destroy us. We destroy ourselves through our reactions to it.

Our reader may not realize it, but she IS coping. She reached out to this website. She has sought professional help and she is involved with the state services for the visually handicapped. She is doing what she can do.

We don’t have to like having AMD and losing sight. We don’t have to be happy about it. We just have to keep moving. I mentioned this before but another one of my favorite, never met people, Winston Churchill, said something like “when you are going through Hell, keep going!” It is in pouting and denying reality – in stopping in the middle of Hell – that we are destroyed.

To address the part about being hopeful, optimistic, etc, a bit more, there are times all of those pretty thoughts are going to desert us. Times there seems – as in appearances and impressions – there is no hope. Those are the times we simply put one foot in front of the other. Determine what is next and do it.

I have been told I am “in love” with DBT. I am, for the simple reason it works. Mindfulness and staying in the moment work.

For example, the Beastie Baby has been diagnosed with lung cancer, but right now she is sleeping peacefully on the floor next to me. Right now, life is good. We will take one day at a time, one hour, one moment if need be. We will not grieve (much) and ruin life when things are good. Lesson: stay in the moment. Deal with the now. By dealing with each moment as it comes, we can handle a scary future. Buying future grief and hardship is a bad investment.

I could address the absolutes – always, never, everything – but I won’t. Not much, at any rate. We just need to remember few things in life are truly that black and white, that cut and dry. Every dark cloud has a silver lining and every silver cloud has some dark inside.

This has been a little jumbled, but that, after all, is my mind. I guess in summary, what I want to say is:

Accept this is happening, Recognize you are not powerless, we all have choices we can make.

Understand if we take care of each moment as it comes, the future will take care of itself. Don’t get ahead of yourself.

We don’t need to be hopeful or optimistic all of the time (even though there is reason for hope). If you cannot muster any faith in your future, just put one foot in front of the other and move. You will be surprised where you end up.

Continue reading “One Foot in Front of the Other”

Mi Depression, Su Depression

We all know adjusting to sight loss is stressful. We are well aware of the times it has freaked us out but how aware are we of the impact our loss has on those around us? How often does anyone notice the stress on family members ?

Back in 2009 – that is 8 years ago, guys. Long enough this report could be in the third grade! – there was published an article entitled Family Function and Low Vision: A Systematic Review. The authors lamented they had not had many appropriate articles to review and – guess what – I found pretty much next to nothing since then. Families of the visually impaired are being ignored!

But yet families are a huge support to those who are losing their sight. Adequate support – both practical and emotional – protects against distress and other negative health concerns. The way we stay functional and sane is by having people there for us.

The problem is sometimes family members go through all of the stages of adjustment we do. Shock, denial and mourning are not just for us. But since we are the identified clients, we (hopefully) get the services and the attention. They don’t.

Visual impairment is related to separation and divorce. (Or at least it was in 1993. THAT study is old enough to vote.) There have also been more recent studies on emotion contagion.

Yep, mi depression, su depression*. And if that is not bad enough, the spouses of the visually impaired even have worse physical well-being than controls. Jeez.

The suggestions from the authors were pretty basic: education and mental health counseling. Family members need to know about visual impairment so they know how and how much to help. Overprotection can be nearly as damaging as neglect. Mental health support is pretty self-explanatory. Find and investigate the negative belief systems and see what you can do to refute them. Provide emotional support.

In short, the fight can be as hard on the guy who holds your coat as it is on you. Family members need to know about your vision loss and be told the level of support you need. They need to have time to do things for themselves and they need someone to support them as well. None of this is easy on anybody but it is easier when we do it together.

*translation of title is “My Depression, Your Depression” as in the phrase “Mi Casa, Su Casa” which literally translated means “My House, Your House”.

Continue reading “Mi Depression, Su Depression”

Improving Communication: Part 1

TGIF! Greetings from the land of organized chaos, aka my life!

I have not been writing as regularly as I would like. For one thing, as I keep pointing out, there are lulls in the action with AMD. You adapt to a certain level of loss and things are calm until the next loss of vision occurs.

Crank up the magnification and soldier on until the yet next disaster. Lulls are not all that page worthy…and I don’t need a disaster right now.

The other reason is my days have been flying! I am taking more counseling clients and my days are jam packed. Nothing like being busy to make the time fly!

All of this by way of saying, I am sliding into a holiday weekend (Happy Memorial Day!) and I am going to try to pound out a few pages over the next few days.

We stopped for deep dish pizza on the way home. (The new comfort food!) I walked the Beastie Baby in the neighborhood and the field. She drank from every rain puddle (mud flavor! Yum!) and we investigated what looked to me like bear scat (poop, no bear. Life is good). Well fortified and with the ‘adventure’ out of the way, I guess I am ready to go.

The topic was suggested by one of our readers. She is located in Massachusetts and has just helped to launch a new, vision loss support group. (Kudos!) The topic had come up in her support group: vision loss and social isolation.

The short answer is “yep”. Problem is, I rather doubt I can make a page out of that. In trying to flesh things out a bit, I came upon a publication by the Thomas Pocklington Trust. Published in 2013, this literature review contained 44 pages on the topic. Good resource. [Lin/Linda: it’s 44 pages if you download the Word version; 8 pages for the PDF version which is what I’ve linked to.]

The review starts by pointing out loneliness is not part of natural aging. Loneliness and social isolation are also not inevitable for the elderly, visually impaired population. (So maybe “yep” is not the short answer?)

That said, however, it is easy to see how vision loss, loss of function and depression can lead to social isolation and how social isolation can loop back around and cause more depression, etc. People with vision loss can really end up in a nasty downward spiral.

The review acknowledges the problems that can come from not recognizing faces and facial expressions. Without nonverbal cues to go by, communications can easily breakdown.

Lack of good social communication can break down social relations and lead to a drop in feelings of self-efficacy. Feeling you are not able to adapt and cope with your loss once again leads to all sorts of issues and perpetuates the downhill slide.

I think I mentioned before that feelings of self-efficacy are exceptionally important to mental health. The “I can do it myself” attitude can be reinforced by success in using assistive devices. In another page I believe I quoted something that said one of the best predictors of life satisfaction is access and use of assistive technology, both high and low tech.

OK. To be continued. Since some of us have trouble reading long text, I will stop here for now.

Continue reading “Improving Communication: Part 1”

Attitude Adjustment

Alrightee then. End of feeling sorry for myself…for now. When the horse throws you off, you get back on and all that. It is attitude adjustment time.

Counting my ‘positive pennies’ the first half of today has been good. I tried my gown on this morning and it fit. That is a positive. I picked it up for $25 two years ago at the thrift store. It is actually a pretty gown for $25. This evening my gown and I go to the Mom Prom.

My husband dropped me off on the other side of those two, scary main roads and I rode my bike the rest of the way in to Zumba at the Y. Then I rode into town, chained my bike at the library and went to the street fair.

Since my class was putting on a demonstration, I participated. Participation is often a good thing. Afterwards I wandered around, ate fresh-cut fries and a chocolate brownie (we have discussed my dietary shortcomings; haven’t we?) Also ran into several people I know.

Back on the bike for the ride home. Coming home I passed a whole hedge of lilac bushes. I could have stood there all day and taken in the fragrance.

All told not at all bad start to my day. I may have age-related macular degeneration and central vision loss but I can still savor chocolate brownies and smell the lilacs. Oh, and they had this great group that does Chicago and Al Jarreau and all sort of music from our youth (assuming you are also on the upward side of 60!) The lead singer is excellent. I enjoyed their performance.

Attitude adjustment. Just like the three most important things in real estate are location, location, location, it appears the three most important things in keeping yourself mentally healthy with AMD are attitude, attitude, attitude.

I found a 2005 study by Jennifer Tolman et al. The study was on psychosocial adaptation to vision loss. Also on adaptation’s relationship to depression. Tolman and her people discovered it really is basically a matter of acceptance and compensation for vision loss. It is the internal experience that really counts. You know: if you believe you can’t, you can’t. If you believe you won’t, you won’t. Ya gotta believe in the possibilities in your life.

Tolman published the Adaptation to Vision Loss Scale (AVL) in her article. It consists of about 24 yes/no questions. Many of them have to do with self and personal power. It is interesting to look through. If you take it and find yourself answering as if you are powerless and/or have lost yourself, you might want to consider getting some help. Depression is a possibility.

Another thing she found related to depression was making use of services and adaptive technology, etc. I see that as a chicken and the egg sort of thing. Services make you less depressed but you have to have the motivation to go look first.

So that is pretty much it. We all have our setbacks. We just cannot wallow too long. Sometimes it is time for an attitude adjustment.

written April 29th, 2017

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Keep On Keeping On

I gave a client “there is nothing else you can do” speech today. I told him if his relative is not a danger to himself or others, he could not force him into treatment. Doesn’t matter if he is in communication with the fairy people or if he sees the devil in the fireplace, there is nothing my client can do to force him into treatment.

People hate that speech. My client told me he hated when people said that to him. We like to believe in our efficacy, our power. “There has to be a way! Maybe I can try harder, find a better argument, something.”

Accepting there are some things you are not able to influence is a bitter pill.

In at least that way, you folks who have wet AMD are ‘better off’ than those of us who have dry. At least you folks get to actively participate in your own treatment. Granted, getting a shot in the eye is not my idea of a good time, but it is something. We folks with dry AMD get to do…..nothing.

How do you sit there and do nothing when everything is falling apart around you? The thought that you may have to endure for years and years and have no recourse is terrifying for people.

I have talked about the distress tolerance skills but, since this came up and we are actually teaching distress tolerance, I want to revisit it. Distress tolerance skills are not ways of ‘fixing’ anything. They won’t make my client’s relative to not be psychotic and they won’t give me 20/20 vision. What they are are strategies for enduring.

With distress tolerance skills, we get to hunker down and survive the storm, not make the storm go away.

Also said this before but I will say it again: one of the tenets of DBT is “I am doing as well as I can, but I can do better”. No one wants to be a screw-up. We can pretty much guarantee that under their present state of circumstances, most people will be doing the best they can. Given new circumstances and a new skill set, they can do better.

How that figures in here is that I don’t want you to think that using distress tolerance skills to endure means you stop trying. Offered a viable treatment, I, for one, would take it in a heartbeat. Treatment would be the new skill set and how I could ‘do better’. However, until that day comes, I am stuck enduring.

There are several pages on which I talk about the DBT skills IMPROVE and ACCEPTS. IMPROVE skills are used when we are in the midst of a crisis. The letters stand for imagery, meaning, prayer, relaxation, one thing in the moment, vacation and encouragement. [Click here for one of Sue’s past pages on IMPROVE.] ACCEPTS skills are used when we are trying to endure in the long term. The letters stand for activities, comparison, contribute, opposite to emotion, pushing away, thoughts and sensations. [Click here for one of Sue’s past pages on ACCEPTS.]

Lin will probably put the links in, but if not, just search the keywords. There really is something you can do when there is nothing to be done.

Keep on keeping on. Continue reading “Keep On Keeping On”

A Tutu and A Tiara

I would like to go back a day or so in time but continue on the topic of DBT Emotional Regulation Skills. Needless to say, finding out my AMD had progressed that quickly and I would have to redefine myself as a visually impaired person was not fun. It was downright depressing and we have already addressed the lovely panic attacks that have been – and actually continue to be – enveloping me at odd moments. Saying that I was in a state would be an understatement. My husband said that I cried more than I had cried in all the previous 25 years of our marriage. So, in that state, why in the name of heaven am I wearing a blue tulle tutu and a paper tiara? The answer is: it was Marcy’s birthday. We had been planning a party in Zumba class.

I had cried more than I had cried in all the previous 25 years of our marriage.

Could I have stayed home and cried? Of course.  Part of me wanted to and no one would have faulted me. I had drawn the bad card and it was understandable if I had crawled into my shell for a while, even a long while.  The problem was that it was Marcy’s birthday and I had a tutu and tiara waiting for me. I was supposed to be in my usual place dancing.  The problem also was that I had to do something to challenge my mood or I would have been a long time crawling out of my hole.

It was Marcy’s birthday and I had a tutu and tiara waiting for me.

DBT has a technique called Opposite to Emotion. It is just what it sounds like. If you have an unhealthy emotion, act in the way you would act if you were having the opposite emotion. Behavior follows emotion but emotion also follows behavior. Not a new concept, Ignatius Loyola said something about performing the acts of faith and faith will follow. In other words: fake it until you make it.

Opposite to Emotion boils down to fake it until you make it.

So, for one hour, I acted as if all was right in my world. I dressed up. I danced. I laughed. And for that hour I felt better.

Please note I said for that one hour. It is all right that it did not last forever. It is all right if I went back to being distressed. For that one hour, I was improving my mood and fighting the downward spiral that could have led to more problems, such as a serious depression. Maybe I could do it another hour another time.  Behavior follows emotions but emotions also follow behavior. Fake it until you make it. Put on your tutu and your tiara and dance.

Put on your tutu and your tiara and dance.

Written February 2016. Reviewed September 2018.

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