Improving Communication: Part 3

Hello! Rode my bike to the Y. Took a couple of classes and rode home. Then it was dog walk time. Right now I could stand a nap! Hopefully I can stay awake enough to write a sensible page. A little wonky? You know why!

I have continued to look for more information on loneliness and poor, social relationships for the visually impaired. You remember, miscommunication because of lack of nonverbal cues.

[If you have not read Sue’s previous 2 pages, I suggest you do that before continuing.  First, there’s Improving Communication: Part 1, then Improving Communication: Part 2]

The Pocklington review ended up saying there are no current answers. They called for more research. Hopefully the increasing numbers of us visually impaired will encourage someone to get on the proverbial stick.

Once again, there should be some sort of manual for this but I cannot find one. (Back to if you want something done right, do it yourself! Anyone want to make topic suggestions?)

An abstract from work done by Wang and Boerner indicated responses in their study fell into two categories. Sometimes the visually impaired adjusted their behavior while other times they just let the relationship go bad.

The group who tried to maintain relationships depended upon a few different strategies. These strategies included explaining themselves more and being more assertive. They also included relying on other senses for information, faking it and being more selective about whom they interacted with.

Remember several articles I read for both vision and hearing impairment stressed the need to share you have a disability. That can be hard for some people although not admitting to a disability can end up being harder in the long run. Sometimes we just gotta accept.

The people who let relationships go of course did things differently. They would withdraw and make fewer efforts to socialize. They would also become angry and tell people off.

As I research this, I keep coming back to the need for work with a good speech and language therapist to improve communication skills. Or at least that is my conclusion. Once again I could be dead wrong.

Quite a while back an Italian study, Extracting Emotions and Communication Styles from Prosody, included some neat charts that are basically a guide to identifying speaker emotion from prosody. Prosody is the pattern of stresses and intonations in speech. For example, joy is characterized by factors like quick meter, quick attacks and slight or missing vibrato.

If these characteristics have been identified and listed, it means people can be taught to recognize them. And if we can be taught to recognize them, we can harness them in efforts to improve communication which just might lead to fewer feelings of isolation and loneliness. Maybe?

….for what it is worth. That’s what I got. If there is a definitive answer out there, I don’t got it. I can’t find it. Anyone have any other ideas, let us know and we will pass them on.

These three pages were in response to an inquiry from a reader. If she knows one person with these concerns, we suspect there are dozens more lurking in the shadows. By addressing her concerns – or yours- we may help others.

Keep those cards and letters coming!😎 Continue reading “Improving Communication: Part 3”

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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”

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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.

Continue reading “Attitude Adjustment”

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There IS Help

I got lots of help from Blindness and Visual Services of Pennsylvania. Lots. Part of the reason for this was I was in the vocational rehabilitation program. They wanted to get me back to work so I could continue to be a tax paying citizen. I shared that goal with them. At least the back to work part. Paying taxes maybe not so much!

People who are not planning on going back to work get a lot less help. According to my low vision special, Pennsylvania has now reduced funding for those clients down to $600 per individual. That does not buy much. My handheld magnifier was $600.

Since the government is, once again, not bending over backwards to help us, where can you go for some basic assistance? It turns out there are several private agencies that stand ready to help.

Again, the disclaimer: these are leads I got off the web. I have not used any of their services and I have not a clue how valid their advertising is. At least two of the three I am mentioning here are run by nationally known organizations. Hopefully that makes them good. Maybe not. If you have familiarity with these programs or others, please let us know.

If you live in Dallas or near to that city you might find some services at the American Foundation for the Blind.  The website advertises all sorts of seminars and community outreach programs. They also advertise an ‘apartment’ called Esther’s Place. Esther’s Place has all of the rooms outfitted with products and appliances either designed or adapted for several, different levels of vision loss. Hands on demonstrations of these things can be arranged.  AFB Dallas also offers help by voice at 214-352-7222 or email at dallas@afb.net.

If you live in Duluth Minnesota try the Lighthouse Center for Vision Loss. The Lighthouse also has an impressive list of services. They have such things as training programs for adjusting to vision loss, independent living and workplace adaptations. They also over free radios for listening to audiobooks and local newspapers. Their onsite low vision store has customer service people to help you with your purchase.  Contact number for the Lighthouse Duluth is 218-624-4828. Email: info@lcfyl.com.

In eastern Pennsylvania there is Center for Vision Loss with offices in the Lehigh Valley as well as Monroe County, my old stompin’ grounds! They advertise a speakers’ bureau as well as escorted transportation. This is in addition to the ‘usual’ services. Their contact numbers are 610-433-6018 and 570-992-7787.

That should give you a start. If you’re located elsewhere in the USA, I would suspect AFB could give you a few leads. Find anything – worthwhile or not – let us know and we will publish your impressions. There is help out there.


Continue reading “There IS Help”

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Quack, Quack

Caveat emptor! That is Latin for “hold on to your wallet!” (Actually it means “let the buyer beware!” but close enough.)

As of late we have been hearing about ‘medical professionals’ offering services that sound pretty much like quackery.

You know the old saying: if it walks like a duck and quacks like a duck, and looks like a duck, it is probably a duck. The problem is some of us don’t know what one of those old ‘quackers’ looks like.

Ergo, I am offering a short tutorial on identifying the ‘ducks’ among us (Great. Another ‘ornithology’ lesson 😵).

You can find dozens – literally dozens; makes me kind of sad about the ethics level in America – of posts talking about how to spot a quack. Skeptical OB gives a shortlist of six red flags that can be applied across the disciplines. They report quacks make claims of secret knowledge and giant conspiracies. They baffle with bullshit and claim they are so revolutionary they threaten the medical establishment. Claiming toxins in everything is a biggie. Also flattery. You have heard it. How you are doing such a great thing and blazing the path for others? Yeah, that one.

There are also posts talking about how to spot quacks in more specific areas. Quackwatch.com has a list of 26 ways to spot vitamin pushers.

Some financial ways of identifying quacks are listed by USA Today. Reputable doctors do not ask for deposits or cash up front. Potential quacks offer the most amazing – and expensive! – treatment first and don’t even bother attempting other treatments. Not covered by insurance? Be suspicious and ask lots of questions.

To support some of the points in the Skeptical OB post, USA Today points out science is pretty much a team sport and very few people make discoveries all by themselves in their garages anymore. Things are just too complicated and too expensive these days.

The idea of the dashing, undaunted, brilliant rogue doing his research alone at night (I just flashed on Dr. Frankenstein here; sorry.) is romantic but obsolete.

Testimonials are great at funerals and ‘roasts’ but anyone who has had to write a recommendation knows such things are easily slanted and misinterpreted. I am stopping short of accusing anyone of outright lies or psychotic delusions, but if all the treatment has to back it is testimonials? Put away the credit card and leave.

The problem – or one of the problems, I should say – with quacks is they go after the vulnerable. Sleazy sons of sea crooks. Are some of us desperate? Absolutely. We don’t want to believe medicine is not yet in a position to help us.

USA Today suggested one of the things I have been harping about now for months: sign up for a clinical trial. Even though ‘mine’ have been stalled for months and driving me insane, mainstream research is where the action – and the hope – is.

Minimally go for a second opinion before you commit to any treatment, but especially if it looks a little murky based on some of the red flags we have talked about. If your treatment provider tries to discourage you, he might be hiding something (like he’s a quack, for example!)

Thus endeth the lesson on “foul” identification😘

Be safe out there. Continue reading “Quack, Quack”

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Preventative Maintenance

Last night I got up to go to the bathroom and I was dizzy, really dizzy. My husband suggested it was my blood pressure so when I got to school I had the nurse check it.

I may not be the gold standard of 120/80 but I was not bad. I hate taking medication but I take it for my blood pressure. As I get older there is not only the possibility of blowing a gasket but there is some (inconclusive) evidence of an association between hypertension and AMD. In any case, I don’t want to make things worse in the eye department.

After being harangued and harassed for years about my blood pressure (part of the reason I have white coat syndrome!) and now taking medication, I was a little dismayed by a medicalxpress.com article reporting there are preliminary findings suggesting some blood pressure meds are associated with much greater risk of developing AMD! What is up with that?

As part of the Beaver Dam studies, they have been collecting data on eyes since 1987. Their data indicated there is a correlation between the use of vasodilators such as some people take for blood pressure and the development of AMD.

Please remember correlation does not mean causality. In other words they could be running together but one is not causing the other. For example, Florida has the largest number of elderly of any state but living in Florida does not make you old.

There are other factors at work. Just the same, something is related between them and we should figure out what it is.

The researchers also found that beta blocker use was associated with increased risk of developing AMD. In particular it was associated with the development of wet AMD. Beta blockers are used for treating heart disease.

Now the article did not say whether the control group also had some form of circulatory system disorder for which they were receiving different treatments. Therefore it is hard to say if it is the medication doing the damage, the underlying, circulatory disease doing the damage or a third factor underlying both the circulatory disease AND the AMD doing the damage. Inquiring minds want to know but we don’t seem to have an answer to that yet.

Because we don’t know, if you are concerned, talk to your doctor and see what he or she has to say before doing anything. Don’t make any drastic changes based on one study. Your doctor is your expert and you should make informed decisions in concert with him.

Me? My high blood pressure meds are diuretics so I don’t need to worry about the meds. However, if I had to guess – and this is a guess from a layperson – my money would be on an underlying genetic snafu wreaking havoc with both our circulatory systems and our eyes.

And until they can lift the genetic hood and make the necessary repairs on that level? Preventive maintenance, my dears, preventive maintenance. Watch what you eat, get your exercise and, yes, take your medication as prescribed. Continue reading “Preventative Maintenance”

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