Category: Self care

One Year Anniversary: Part 2 My Myths

Just wrote the page on my ‘first birthday’ as a visually impaired person a few days ago in real time. Then this week I taught myths in DBT. My brain sort of put them together and I started to think about myths about the visually impaired.

There are all sorts of pages online about what fully sighted people think – sometimes totally incorrectly – about the visually impaired. But what did I think was going to happen to me? What are you thinking is going to happen to you?  Those are the important questions. Who cares what those pesky, fully-sighted people think about us??

When I first lost my second eye and had to take a leave of absence, I thought I would never work again. Did not happen.

I was out for about a month. Land speed record? Yeah. I told my blindness and visual services guy I was (and am!) a pain in the butt and he would be doing himself a favor to get me back in harness as soon as possible.

My first anniversary for being back to work will be something like late March. It might not last forever, but I have gotten at least a year’s reprieve. I am slowly transitioning into more ‘low vision friendly’ work and even when I cannot test anymore, I expect to work at least part-time.

I am not an anomaly! (OK, I will accept strange, different, quirky but not anomaly.) National Federation for the Blind reported that in 2014 approximately 40% of those with “significant vision loss” (don’t ask me exactly what that term means) were employed. The stats are not fantastic, but if you want to work, it is possible.

I also thought I was going to sit around the house bored to tears and depressed. I had my moments (several of them!) and expect to have more but in the big picture, I am just about as engaged as I was before my loss. This morning were my two, usual classes at the gym. Tomorrow is a hot yoga class. Last week I went to one job party and next week I am going to another. I have plans to go to a concert next month.

OK, so I am not getting out of town as much as I would hope but at least I am getting out of the house!

Those were my ‘biggies’ as myths. I also had a few other ones. Getting around would be impossible, for example.

Sometimes my transportation arrangements are worthy of Rube Goldberg, but somehow I get there.

Then there was I will be all alone. Nope. Crazy, but people volunteer and go out of their way to help. I have become part of at least one person’s master plan for getting into Heaven! Who would have thought that one?

So right now all those myths are not coming true. Grain of truth in every one? Of course, that is part of the definition of myth. But on the whole, not so bad and we continue to take things one day at a time.

So here are your discussion questions: what were your myths about being a visually impaired person? How much truth was in them? Continue reading “One Year Anniversary: Part 2 My Myths”

Highlight: Does wet AMD start as dry?

There are differing opinions and interpretations of what those in the field of macular degeneration have learned.  The links below certainly don’t represent all views, of course, but are an example of some of what you will find.

The important point is that it is CRITICAL to get your eyes examined as recommended by your doctor and to monitor your vision between exams. Click here to find out how to do that.

From: http://www.webrn-maculardegeneration.com/macular-degeneration-stages.html

“Advanced AMD is either a break-down of light sensitive cells and supporting tissue in the central retinal area (advanced dry form), or the development of abnormal and fragile blood vessels under the retina (wet form).”

From: https://www.macular.org/dry-vs-wet-macular-degeneration

“About ten percent of all cases of Age-related Macular Degeneration become “Wet” AMD (typically a person has dry AMD first and progresses toward wet).”

From: https://nei.nih.gov/health/maculardegen/armd_facts

“There are three stages of AMD defined in part by the size and number of drusen under the retina. It is possible to have AMD in one eye only, or to have one eye with a later stage of AMD than the other.

Early AMD. Early AMD is diagnosed by the presence of medium-sized drusen, which are about the width of an average human hair. People with early AMD typically do not have vision loss.

Intermediate AMD. People with intermediate AMD typically have large drusen, pigment changes in the retina, or both. Again, these changes can only be detected during an eye exam. Intermediate AMD may cause some vision loss, but most people will not experience any symptoms.

Late AMD. In addition to drusen, people with late AMD have vision loss from damage to the macula. There are two types of late AMD:

In geographic atrophy (also called dry AMD), there is a gradual breakdown of the light-sensitive cells in the macula that convey visual information to the brain, and of the supporting tissue beneath the macula. These changes cause vision loss.

In neovascular AMD (also called wet AMD), abnormal blood vessels grow underneath the retina. (“Neovascular” literally means “new vessels.”) These vessels can leak fluid and blood, which may lead to swelling and damage of the macula. The damage may be rapid and severe, unlike the more gradual course of geographic atrophy. It is possible to have both geographic atrophy and neovascular AMD in the same eye, and either condition can appear first.”

From: http://www.avruc.com/macular-degeneration.php

“The macula is the central part of the retina and allows us to read fine print clearly and see colors vividly. It is this area of the retina that deteriorates in ARMD. There are 2 forms of ARMD. Everyone who has macular degeneration starts out with the dry type and 20% progress to the wet type over the course of a lifetime. “

From: http://www.youreyes.org/eyehealth/macular-degeneration

“Can the dry form turn into the wet form?
Yes. All people who had wet form AMD had the dry form first. 

The dry form can advance and cause vision loss without turning into the wet form. The dry form also can suddenly turn into the wet form, even during early stage AMD. There is no way to tell if or when the dry form will turn into the wet form.

Can advanced AMD be either the dry form or the wet form?
Yes. Both the wet form and the advanced dry form are considered advanced AMD. Vision loss occurs with either form. In most cases, only advanced AMD can cause vision loss. 

People who have advanced AMD in one eye are at especially high risk of developing advanced AMD in the other eye.”

Please see your doctor for regular exams and between exams, check your vision at home.

Latin Lesson

Good evening. I just got up from a nap a bit ago. I normally don’t nap but this transportation business has me all screwed up. They picked me up over an hour earlier than ‘necessary’ (according to me) again this morning. Good grief. I have mentioned I am not a morning person so happy camper I am not. Now I will be up for a while.

You know the phrase “do as I say, not as I do”?  Getting my sleep messed up like this is a no-no. There is all sorts of evidence that regular, good quality sleep is one of the foundations of good health.

It is also a foundation piece of good mental health. In case you have not figured this out yet, I should tell you getting the diagnosis of AMD was a trauma. (No shit, Sherlock.) And one of the simplest ways to combat trauma? Sleep.

Let me start by saying I am not talking about sleeping to escape reality. That is a whole other ballgame. If you are depressed and sleeping excessively, go see your doctor for good drugs and a referral to a mental health therapist.

What I am talking about is the trauma processing ability of sleep. Processing. Not avoidance. Five or six years ago people at UC Berkeley started some really cool research into the relationship between depression and PTSD and sleep. The researchers recognized people with depression and PTSD have lousy sleep. The worse the sleep, the longer the mental illness persisted. Those who slept better, healed faster. How interesting, Watson. With that realization, the game was afoot!

It was hypothesized sleep somehow lets the brain process -sort of like digest- traumatic events and raw emotions. There is something about the brain chemistry of REM or dream sleep that allows memories to be reactivated and integrated into the whole of remembered experience.

There is also this interesting interaction among some of the parts of the paleocortex. Paleocortex means old brain. (Literally ‘old bark’ in Latin. Like a tree, not a dog. Translating it back does tend to make it all sound a lot less formidable; doesn’t it?)

Anyway, I digress again. Five years of high school Latin should have some use!

In the paleocortex are all these very basic, survival-oriented bits of brain ‘machinery’. The two we are concerned with in this discussion are the hippocampus (Latin for ‘seahorse’, by the way. Vague resemblance. The brain part naming guys took Latin in high school, too) and the amygdala (absolutely no idea, sorry).

The hippocampus is related to memory retention and the amygdala is related to emotion. Basic emotion. Survival stuff. As in fight, flight or freeze. Being in the same neighborhood, these brain bits talk to each other. They talk to one another a lot. Sometimes they get talking to each other so much they work each other into a frenzy. “I have this horrible memory! OMG!” “What a threatening thing! I need to get very worked up!” “Threatening?! Oh, yes, my horrible memory!”

Sleep gets in there and calms all this down. It allows the neocortex (‘new bark’) to get a few words in and be the voice of reason. It helps to establish a dialogue between the rational brain (the part that knows you can get help and can think clearly about your situation) and the old brain bits that are flipping out.

Sounds all rather elementary. But it is not a perfect fix. As Holmes would say, “Begin at the beginning” with sleep. If it is not enough, seek additional help.

Right now, I am going back to bed.? Continue reading “Latin Lesson”

Zigzags

Hi. I have done as much as I can do on that report. The scoring manual for one of the tests is in the office. Plan ahead, Sue! I am still not used to not having everything in the hatch of the car.

Before grabbing an evening snack, I will get started on my GuideMe, well, guide. The second paragraph of the welcome already begs comment. To quote: “the intent is to simulate as accurately as possible a post-diagnostic consultation with a doctor or therapist.”

Now my local ophthalmologist is very competent and a sweetheart and Regillo is scary smart and accomplished but there was never, ever mention of actually teaching me a damn thing! Not really. What I know Lin and I dug up on our own.

Lin has found that to be true with most of our subscribers and group members. We are the closest things we have to AMD educators. We are doing it for each other. Where did these people find medical professionals to do ‘post-diagnostic consultations’?!?! I want to know.

End of rant. However, for future reference, AMD educators are a great idea. Somebody should actually do it.

Moving on to the visual symptoms link of GuideMe, I am thrilled to say I don’t have the waves. I have gotten seasick in a kayak on a sheltered cove. I do not need waves in my vision!

I also don’t have a totally blank space in the center of my vision. Maybe it is closure and being done by my brain and not my eyes, but some things ‘bleed’ through. What my hope is is there will be enough live photoreceptors left to let me fill in that hole should I ever get the RPE stem cells. Do I know the divot that is my geographic atrophy is getting a bit large? Yep, but a girl can hope. Things aren’t totally gone there….yet.

Photopsia was a term I had never heard of. My mother had them with migraines and just called them the zigzags. According to Wikipedia – you know I always go for the most erudite source?- photopsia is the presence of perceived flashes of light. They are not only associated with migraines but also with posterior vitreous detachment (PVDs), retinal break or detachment, occipital lobe infarction, and sensory deprivation. Migraines, by the by, can be with or without pain.

Speaking to the migraines first, I had a couple of incidents of  what I thought were migraines  with no pain but photopsia the other week when I was stressed. Since my mother had zigzags I just assumed migraine.  I did mention them to my general practitioner but now I am thinking I should also give a holler to my ophthalmologist. I would suggest you do the same should you ever see flashes or zigzags.

Why? Well, GuideMe says a retinal detachment is a ‘shower of sparks’ but I personally would not want to be standing around trying to figure out if it satisfied criteria while MY retina detached. Also, looking at that list above, I see posterior vitreous detachment which can have some symptoms similar to retinal detachment (don’t make the call of what it is yourself). Also with a really good tug, posterior retinal detachment could potentially lead to a macular hole. And with all that good news, I imagine you really don’t want to be reminded an occipital lobe infarction is a brain bleed in your sight center; do you? Didn’t think so. Not thinking many of us spend time in sensory deprivation tanks so I won’t address that one.

That is it for that section. I am going to email the good doctor and then go to bed.

Remember, I am probably not typical (have never been?) and your eyes are not required to be like mine. I tell you what is happening with me only as one example of what might be expected.  I have been told it can be normalizing….or not!?

Night!

Continue reading “Zigzags”

Taking Care of You

Morning. I have nothing until noon and I just slept until 8:30. Whoa. Must have needed it.

Which brings me to the topic for this page: a quick review on self-care. I forget and I even teach the stuff! I suspect you forget, too.

We were gone for nearly two weeks. Iceland meant new climate, new food, new routine, new time zone. These are all stressors. The human body was meant to cover the distance between here and there in five months, not five hours. Then I came home and was not at the top of my game for something important. More stress.

I am sure you know about you. Me, I show stress by not sleeping and sometimes I get a migraine. I had two last week. While migraines are not fun, they tell me something. I need to stop the nonsense and take care of myself! That means a big dose of PLEASE.

Off schedule, my husband and I both missed our meds a couple of times. I needed to take care of my physical illnesses by getting back on my meds on a regular basis. That meant being sure I took my meds right after brushing my teeth like always. Routine.

Eating properly had to happen which meant I had to – gasp! – cook. My big deficit is vegetables. For me, carbs and salt are basic food groups. I had to avoid that and provide myself with meat, potatoes and a vegetable or two or three.

Balanced nutrition was a must. We are what we eat….in that case, I’m popcorn!

Avoiding intoxicants has never been a problem for me but if you are the type to have a couple of beers or a few puffs to destress on a regular basis, you should stop. Not good for you.

I say that and then I turn around and say I took an OTC nighttime pain reliever to sleep. This is not an every night thing, however. I also used aromatherapy with a little Vicks Vaporub and did my square breathing.

Remember to sleep in a cool, dark room. Limit your screen time before bed. That is what the experts say.

Exercise has been royally screwed up this week because two of my rides had other obligations. Back into the groove tomorrow. In the meantime I had my husband take the Beastie Baby and me to the beach for our walk.

A good dose of nature is good for what ails you. Gently running water is great for providing a little dose of tranquility.

I admit, attention hog that my husband says I am (and I am. I love positive regard), I did have a few other mood boosters. My third job boss is coming half way to pick me up and take me up there. They have work for me. I may be pitiful but knowing I am wanted means a lot.

Then it turns out I did not do as abysmally in the photo contest as I thought I had. Out of three entries I had a second and an honorable mention! Yippee!!!!

To make matters better, my life-long friend the artist had three paintings in the associated art contest. She earned two firsts and a second! Taking photos of her paintings with their ribbons and hearing her reaction was the most fun of all! I “made (her) day!” , which was awesome.

Doing for others really does help you get over yourself.

Time to get ready for work. I will get to reading that article about increasing visual span this evening. Who knows? Might help. Continue reading “Taking Care of You”

I Have Macular Degeneration…Now What?

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers:

Click here to go to Guide Me.

Click here to watch a 4-minute video that explains what AMD is, what causes it, and what can be done about it.

Click here for a good list of Frequently Asked Questions.

Click here to go to a great site maculardegeneration.net where you will find articles written by people with macular degeneration and caregivers. They also have a Facebook page.

What other websites are helpful?

Here are some of our favorites:

Click here to find out should I take the AREDS or AREDS2 supplements?

Click here for a video that covers important information about AMD

Click here for a description of dry vs. wet AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here for an explanation of the stages of AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to read about what happens if you have AMD in only one eye

Click here for some answers to common questions about depression after diagnosis

Click here for an article about how vision rehabilitation helps prevent long-term depression

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

Click here to find a support group (I’ve been told that this site may not be up-to-date. Ask your eye specialist for a referral.)

Click here for eye-healthy foods including a Healthy Vision Grocery List (2/14/2022 site wasn’t formatting properly.) Click here to read the answer to the question ‘What should I be eating or not eating to hopefully slow the progression of my AMD?’

Click here to find out what vision changes/symptoms to look for (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)

Click here for tips on how to make the most of the vision you have (section toward the bottom of the page; lots of other good information on the whole page)

Click here for a FAQ (Frequently Asked Questions) from the Macular Disease Foundation Australia.

Click here for a FAQ (Frequently Asked Questions) from our Facebook group.

Where can I do more research?

You can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

Click here to go to How to Navigate and Search Our Website.

Join our very active Facebook group Our Macular Degeneration Journey. There’s lots more information there as well as support whenever you need it.

How do I move around on the website?

Click here to go to How to Navigate and Search Our Website.

To find about more about me, about Sue, about our project, go to the menu at the top of the page.

Reviewed 02/14/2022

 

 

 

 

Ticking Clock

As of today there are 133 days left in the year. I am still trying to figure out why there are several websites dedicated to calculating this. Is there a cult of New Year’s Eve-ophiles that I am not aware of?

I started looking about three weeks back. I was told the research was to start at the end of the year. Figured I would see how long I – theoretically – had to wait.

I am not one to wish my life away but getting to this particular milestone would be nice. I want to get the proverbial show on the road.

I feel like the clock is ticking and neither snow nor rain nor sleet nor gloom of night is going to keep me from going when I am called. I just have to be called.

The last three weeks have gone fast. I may have mentioned this before, but I like using things in my life to pull me along. Yoga festival, getting my photos framed for the contest, the start of school. Check. Check. Check. Keeping busy and having goals and a routine helps.

I am not even sure I will qualify for the clinical trial. Pretty sure but not 100%. There are all sorts of cancer screenings to go through. I guess if they screen me and discover cancer that might be a bit more important than having my eyes done. Some days it is a toss-up on that. Some days I know I would say to give me the immunosuppressant and I will take my chances. I need this deterioration stopped.

A friend of a friend is having a vitrectomy to correct a macular pucker. I asked if he would write a page about the experience. Maybe he will.

This guy is a runner. He is distressed because he won’t be able to run for about a month. Cannot bounce or be inverted. While I appreciate the addiction to exercise, I personally see this as a no-brainer. I can keep from going to hip hop and doing forward folds if it means I might see better. My activities will be there when I am able to resume them.

So I wait. The passage of time is apparent. It is dark earlier and evenings are cooler.  There is a flock of starlings roosting in our trees. It is soon fall and it will be winter quickly after.

Supposedly good things come to those who wait.  Also found a poster that says “good things come to those who work their asses off and never give up.”  And another one attributed to Joyce Meyer: “patience is not the ability to wait but the ability to keep a good attitude while waiting.”

Sigh.

written 8/23/2016

Continue reading “Ticking Clock”

Have Cane Will Travel

‘Chapter 13’ of something I found online suggested orientation and mobility tricks and techniques have been around for a very long time. After all, it is not like vision loss is a new thing and, if nothing else, we are an adaptable species. Images from as far back as the 13th century showed people using canes and guide dogs. They also probably used sighted guides, a strategy still taught today.

Perkins School for the Blind in England was said to have informally taught orientation and mobility in the 1880s. The Germans advanced the use of guide dogs after World War I and the Americans appear to have gotten into the game during World War II.

According to the PowerPoint, after the Battle of the Bulge in January, 1945 Valley Forge Army Hospital received 17 blinded servicemen in one day. 17 sightless GIs all delivered in one day apparently served as an impetus for somebody to do something! What they did was to establish the War Blind Program. This appears to have been the formal beginning of orientation and mobility training in America.

800px-ID_cane
folding white cane

So far I have had one O&M lesson. The O&M guy brought me a white cane! I want to get across the street on my bike and he brings me a white cane????

While we were not apparently on the same page for my current needs and capacities, there remained some basic truths. 1) AMD is a progressive disease. 2) Someday I may be that impaired. 3) He is here now and when I actually need to use a white cane, it may take six months to get him back! I took the cane.

Cane fitting is something like fitting for ski poles or canoe paddles. My O&M guy said it should reach to the middle of your chest. My cane comes up to about my breastbone.

He also gave me a choice of two tips for my cane. It appears the way you travel determines which tip you should use. People who move more slowly might do better with the constant contact technique. For the constant contact technique the red, roller ball tip I was given might work better. If you move a little faster, you might want to use the standard cane tip and use the two point touch technique.

What I was given is a folding cane. It has an elastic cord inside of it. You pull on the sections and the cord allows you to straighten the cane or fold it up. My cane already ‘bit’ me so I would suggest you keep your fingers out from between the sections when you are opening or folding one of these.

There are also collapsible or telescoping canes and rigid canes.  The National Federation for the Blind (NFB) has a program through which they supply what I was told are rigid white canes free of charge. Let me repeat that.  NFB supplies white canes free of charge.

Now, I would not suggest you get a cane and go charging out the door with no training. However, I am also realistic enough to understand there are not a lot of O&M people out there and someone has to pay the ones there are. You might not be able to find anyone or get him funded.

That said, the “University of YouTube” has instructional videos on basic cane travel techniques. Get someone to watch them with you and be your ‘coach’.  Just be VERY careful. While United States laws give the right of way to persons traveling with a white cane, you can still get run down. Remember: no roadkill allowed!

written 8/5/2016

Continue reading “Have Cane Will Travel”

Waiting for the Go

I got that question again: when are you going for the clinical trial? When I said maybe January, I got the same response. You know the one: “But you must be losing vision all of the time!” Probably. Not very fast, but probably. Not sure I needed to be reminded, but thanks for caring.

Time is moving along rapidly actually. I am now 63 years and 5 days old!? Fast week this. I have noticed the birds are moving in flocks and it is getting dark earlier. My summer is starting to fade. I MUST be getting closer to when this accursed study is going to launch.

But then the next thought is right back to how many RPEs do I lose everyday? What is the other countdown here? Do I want that countdown to go so fast?

I am doing my distraction activities. I worked seven hours today. Pretty much the same number of hours every other day this week. I went to exercise classes three evenings and swam tonight. I am busy!

Kate Sweeney, featured in a Times magazine article on waiting said that distractions did not work in her study but it sounded like her subjects were actively pushing away worry with their distractions. You cannot not think about something by telling yourself to not think about it!

Sort of like: “don’t think about a blue elephant!” Yep, all sorts of thoughts about lovely hued pachyderms out there right about now.?

My distracting involves doing things to do those things. It probably works better. I try not to say things like “I’ll swim so I don’t think about my eyes.” I just go swimming.

Sweeney did not find high self-esteem to be a bit helpful. (I could have told her that!) However, optimism was a help as was being comfortable with uncertainty. She also found that anticipating failure did not help with waiting but helped with dealing with the final outcome.

I guess if you are screaming “failure is not an option!” It is a little hard to get yourself together after you do fail.

A lot of worry and anxiety was also found to make dealing with results easier. The worrywarts started back on task faster if they lost and were more relieved if they won. It is nice to know anxiety about this sort of thing has some benefits.

Sawyer’s article came back around to endorsing what appears to be the panacea these days: mindfulness meditation! Nice to know we are on the right track but it would have been nice to discover some sort of new revelation here!!!

So I wait. My vision loss and medical science are in a foot race. The outcome is uncertain but I remain optimistic. Now I guess I walk the dog.

[If you’re wondering about the title, it’s a ‘play’ on the title of a play by Samuel Beckett “Waiting for Godot”.]

written 7/22/2016

Continue reading “Waiting for the Go”

Monday, Monday

Monday, Monday…  starting another work week. [We haven’t had a song reference for awhile so here’s Monday, Monday by The Mamas & The Papas.]

I say I was ‘bad’ over the weekend but that may not be completely true. Just mostly true. I did finish mowing the lawn Friday night. I went to Zumba Saturday and walked the dog every day. Even got her to the dog park twice. My husband is moving around better and doing some short distance driving so we took the opportunity to take her. I cleaned the bathroom and sorted laundry.

I also did a little cooking. I don’t like to cook and often depend upon something ‘quick and dirty’, meaning ‘already prepared’ for meals. This is not at all good, especially when I am feeling stressed. Good nutrition is important.

Even if cooking a good meal has become difficult for you – or you just plain don’t enjoy it – you should be aware of nutrition.

I cleaned up the kitchen. Put all the dishes in the dishwasher….oh,  I also changed and washed the bedding. Maybe my saying I was being ‘bad’ was not mostly true but pretty much true.

The reason l say I was ‘bad’ is because I sat and listened to an audio book all Sunday afternoon. I generally don’t let myself ‘waste’ time like that. There was plenty of work to do and I tend to be hard on myself when it is not getting done. When I was being raised hearing, “How can you just sit there and look at things that need to be done?” was not a question, it was an accusation of laziness. Sunday I sat there and looked at work!

I put chemicals in the pool. Tried to figure out what is wrong with the pool vacuum. Finished typing a report for work. Wrote two pages for the website. Looked over my notes for DBT class, arranged for a neighborhood child to weed the garden….so maybe I was ‘bad’ a little bit?

Or maybe I wasn’t anywhere nearly as bad as I thought I was.  Maybe taking a little time off to enjoy some entertainment is a good thing?

A lot of us were raised with a strong work ethic. I know I was raised that way. But stopping to replenish yourself is important. Sometimes this visually impaired business can be challenging and tiring. Things suddenly take on a whole new level of difficulty.

And sometimes it is alright to stare at work and be ‘bad’. It is not like it is going to go anywhere!

Continue reading “Monday, Monday”

Highlight: Why are you taking that?

June 24, 2016

I have published information about the AREDS/AREDS2 supplements in the past.  In the Facebook group, we’ve discussed the studies and the pros and cons of taking the supplements. Here’s the text of an article that I hope will clarify some of the concerns that have been expressed by eye professional.  The link to the article is at the end of this post.

A long-time patient presented for an exam the other day. This is a patient that I look forward to seeing, as we have some common interests that we chat about during his exam. He remarked that he really enjoyed coming for his exam, because he felt secure in the advice I give him. However, he also stated he has recently experienced an unsettled feeling in having to find a new primary care provider due to insurance changes.

Here’s a bit of history on this patient: He is in his mid-50s, myopic, but otherwise enjoys normal ocular health. He has a family history of age-related macular degeneration, with both his mother and maternal aunt having undergone anti-VEGF injections for wet AMD. Several years ago I measured his macular pigment optical density and found it to be very low. I prescribed a triple carotenoid supplement (lutein, zeaxanthin and mesozeaxanthin), his pigment level is now well within normal range, and he reports taking this supplement without fail. In reviewing his medications, I noticed an addition, an Age-Related Eye Disease Study 2 formula. Knowing I had not prescribed this, I asked him why he was taking it.

“Well, I was at the drugstore and saw the box. It said that it was the No. 1 doctor-recommended brand, and the only clinically proven formula, so I thought I would take this along with what you prescribed. It is only a vitamin right?”

Only a vitamin… So this patient who has stated he trusts what I recommend for his eyes has fallen prey to misleading advertising on a product label at his local pharmacy.

I asked him a few questions.

GM: Did the label state that there is no clinically proven benefit to taking the AREDS2 formula for patients without AMD or even those with mild disease, only a moderate benefit for those with intermediate to severe disease?

Patient: Well, no, it did not say that.

GM: Did the label tell you that taking large doses of zinc have been linked to the development of Alzheimer’s disease and prostate cancer?

Patient: No, the label did not say that either.

GM: Did the label state that other studies have found that vitamins C and E have no effect on the development of AMD?

Patient: No.

GM: Did the label state that high doses of vitamin E have been associated with increased risk of heart failure?

Patient: No.

GM: Did the label state that if you have the wrong genetics, the high dosage of zinc might accelerate progression of AMD?

Patient: No.

GM: Do you think I would prescribe this for you?

Patient: No, definitely not. I am throwing away the bottle when I get home!

Interestingly, 2 days after this encounter I read an announcement regarding the release of an AREDS2 formula plus a multivitamin. It was stated that the reason for the combination formula was due to the fact that 90% of participants in the AREDS2 trial that took an AREDS supplement also took a multivitamin (which in itself may have skewed the results of the trial). The piece also stated that consumer feedback and data showed that more than 50% of people older than 50 use a multivitamin.

Unfortunately, supplements do not face the same FDA scrutiny as drugs do. Consider what is seen in TV ads for drugs. The announcer lists a litany of possible side effects that the drug being advertised may have, all the while showing images of the supposed patient taking the drug playing with their grandkids or walking along a beach. Now imagine if a commercial for an AREDS formula vitamin had to do the same. Patients would likely think twice while in the drug store vitamin aisle about self-prescribing. And perhaps maybe they would ask for advice from their eye care provider.

References:

The Age-Related Eye Disease Study 2 Research Group. JAMA.2013;309(19):2005-2015. doi:10.1001/jama.2013.4997.

Awh CC, et al. Ophthalmology. 2015;122(1):162-169; doi: 10.1016/j.ophtha.2014.07.049.

Christen WG, et al. Ophthalmology. 2012;119(8):1642-1649; doi: 10.1016/j.ophtha.2012.01.053.

Leitzmann MF, et al. J Natl Cancer Inst. 2003; 95:1004-1007.\

The article above is from: http://www.healio.com/optometry/nutrition/news/blogs/%7Bcc9498b0-051f-44c9-948d-dac572140054%7D/gary-l-morgan-od/blog-why-are-you-taking-that

Increase Sleep, Reduce Glare

Morning. Hope you are all well. I am well rested this morning. Finally. After all of the insanity of the last few weeks I needed to take a nighttime pain reliever and go to bed early. Eight hours later.

Voila! A new woman. Well, actually an old woman in better shape than yesterday but you get the drift.

A couple of points there. OTC (over the counter) medication is good in the short-term. If I had persistent sleep problems I would need to see a doctor.  The issue could be something more than situational stress.

The second point is this: caregivers need self-care. I still had plenty to do last evening but sleep was the most important thing I needed to do. WebMD lists 10 effects of sleep deprivation. Among other things, sleep deprived people have more accidents and do not think as clearly as well rested people. Lack of sleep can cause heart problems and age your skin. I don’t know about you, but I ‘sag and bag’ more than enough now! I need those zzzzzs.

These fit over my eyeglasses and reduce glare.

All of which has nothing to do with the photo. The photo is of my new glare glasses. One of my late presents arrived!

The glare glasses are from a company called Noir, as in French for night.  I glanced at their website. I admit I did not look in-depth. I have sort of developed this effort versus benefit ratio thing. Since reading is so much harder, things of casual interest are skimmed at best.

Anyway, I have my glare glasses and that is where they are from. That is a statement of fact. It is not a recommendation. We get no kickbacks for mentioning these things but if the price is right, we might be bought…..er, we would consider running advertisements for true quality products ?.

The glare glasses fit nicely over my regular glasses. I don’t think they look too bad. They have some style. I have only had them for a couple of days but they seem comfortable to wear and seem to do the job.

Price? No clue. Check the website. Remember I have a Daddy Warbucks in the guise of Blindness and Visual Services. They paid for the glare glasses as well as my other toys. [Lin/Linda here: it’s hard to tell how much they cost since I don’t know the exact configuration of frame and lenses. There are other companies who make similar glasses. You can search for the keywords ‘fitover glasses reduce glare’.]

Once again, I have been very happy with the support I have received from BVS. I would encourage you to look into state support for your vision needs.  Maybe your organization will purchase you glare glasses too.

Continue reading “Increase Sleep, Reduce Glare”

Highlight: Is there any way I can learn to better use what vision I have?

It’s Linda and today I have AMD.  Let me explain.  I want to share what I know about Eccentric Viewing which is a way to maximize the peripheral vision that you do have in order to read text and see faces and objects when robbed of one’s central vision.  I do not have AMD, that’s Sue. Because my Dad had it, I know that I have a 50/50 chance of developing it plus I have a few other risk factors. Having gone through the experience of Sue developing AMD & and doing research for the website, it is a much more real possibility that I will develop also AMD.

I’m simulating AMD by putting dots on my eyeglasses where my central vision would be

I decided to do a mostly unscientific experiment. I cut out dots from the top of a sticky note and pasted them on my eyeglasses.  I had to look in the mirror to find the right positions because my blind spots would not in the exact center of my glasses.  My spots are not perfectly round nor are they exactly in the middle because that would be how it is naturally.  The actual blind spot on the macula of the eye would be tiny but I had to represent it as it would appear in my visual field.  At first I thought that this would not be an accurate simulation because my glasses correct my vision but I know Sue and others wear corrective lenses to maximize the remaining vision (more about that below).  I’m sure this is not exactly accurate but I think it’s the best I can do.

Two observations right away: 1) I’ve developed a queasiness that I can’t explain but I’m guessing it is partly a physical reaction to the vision changes but also an emotional reaction to experiencing AMD.  As for the physical issues, I have serious astigmatism so my eye doctor adjusted my glasses and I’m guessing that some of the most extreme corrections are in the peripheral vision areas and that is not where I’m used to looking; 2) I found it hard to take a selfie because to do this, I had to look straight ahead.  I did much better navigating in the house probably because it is familiar.

On to Eccentric Viewing.  AMD robs us of our central vision but the peripheral vision is spared.  You may lose the ability to see text or a person’s face if you look directly at it or them but you should be able to look to the side or above or below the center and make out some of what’s in your peripheral vision.   You can learn ways to maximize the vision that remains.

Eccentric vision is one technique to do this.  It takes some practice but you can teach yourself.  The diagram below defines the Preferred Retinal Locus (PRL) which is the place where your peripheral vision is the best.  For example, as I simulate AMD wearing the dots, at first I moved my head around (not the best way) & I found that with my left eye (right eye closed) my vision is best on the right side of my visual field. With my right eye (left eye closed), my PRL is to the left of my visual field.  That doesn’t help me with both eyes open and looking straight ahead.  If I had AMD in both eyes, I might choose to read with the eye that has the best PRL. Has that been the case for any of you?

ecc_view_dia_txt
Click on the image for an article with more details.

Click here for instructions on how to teach yourself Eccentric Viewing.  As I followed the instructions, I found that it was hard to keep my head still as they instruct.  My first reaction was to move my head left, right, up and down not my eyes.  I’m sure that would change with practice.

Click here for another article about Eccentric Viewing.  It explains some of the science behind the technique.  It also says that the biological task of this way of viewing takes some time. They say it becomes second nature with 6 sessions with a certified low vision specialist and practice at home.

Here are some more articles:

Click here for an article that explains more about PRL (Preferred Retinal Locus).

Click here for an article on Steady Eye Technique (also called Steady Eye Strategy) which basically talks about maximizing the vision you have.

Click here for a great article that talks about both Eccentric Viewing and Steady Eye Technique as they are used together.

Click here for the definition of Eccentric Viewing through the details of a study done on reading with peripheral vision.

My thoughts after several hours of ‘having’ AMD:
  1. I never doubted that Sue was right in that dealing with low vision is tiring.  Everything that I tried to do took much longer.
  2. I was reminded that our ability to see things is not only a function of the eyes but a function of the brain.  When we change input to the eyes, the brain will try to adapt. I had an experience of this when I tried contact lenses where one eye had a prescription for near vision and the other eye for far vision. It didn’t work, my brain did NOT cooperate. They can do that with Lasik surgery but I wouldn’t recommend it unless you have tried it with contact lenses first.
  3. I can see that Eccentric Viewing/Steady Eye Strategy is very useful but I can also see that much practice is needed.
  4. I’m going to try to talk to my eye doctor about this but I suspect that making a prescription for eyeglasses AFTER central vision loss is different from when a person can use the whole visual field.  That might mean that wearing eyeglasses that you had before the vision loss is not a good idea.  If you’ve had this experience, please leave a comment or contact me directly.
  5. I can see how important things are like proper lighting and good enlargement of text.  I had to move a lamp closer to my computer and had to move it several times to avoid glare on the computer screen.
  6. I can take the dots off of my eyeglasses for which I am TRULY grateful.  My heart goes out to each and every one of you who cannot.

If you have learned or tried to learn any of these techniques, we’d love to hear about your experiences.  You can post a comment here or contact me directly at light2sight5153@gmail.com

Highlight: Where can I get podcasts?

Do you know what a podcast is?  Click here for a great article that explains what they are and how you can find and access them.  It also has a great list of podcasts for those with low vision including ones from RNIB (UK) and several about technology for people with low vision.

For the purpose of this page, I’m not including sources for audiobooks.  That’s a topic for another page!

  • For topic-specific podcasts such as the ones related to blindness or low vision in the article above or the list below, go to their website for information about availability across devices.
  • For podcasts on a variety of subjects, use one of the software websites or apps that have gathered podcasts from a variety of sources such as TuneIn, iTunes or Stitcher Radio which are listed below.
  • For topics specific to a service such as NPR, CNN, Time Magazine, etc, go to their webpage or tablet/smartphone app.   Many of their programs can also be accessed through TuneIn, iTunes or Stitcher Radio which are listed below
  • To customize your own playlist, use what is called a podcatcher where you can search for and follow specific podcasts. You might use this if you find podcasts that you like that are not found on the same services such as TuneIn, iTunes or Stitcher Radio.  This is a little more complicated in that there are various programs to do this (I won’t be talking about that now but here’s a link to a list of podcatchers).   Some are also capable of catching video, news feeds, text, and picture.  Here’s a link to some of the best of them as defined by Tom.
Sources for podcasts related to blindness or low vision

This is NOT a list of all of them.  If you don’t find what you are looking for, I suggest you do a search using your favorite search engine with keywords such as ‘blind, low vision, podcast, audio’.

RNIB Connect Radio From the UK, they not only have podcasts but they have news and other programs/programmes, but though RNIB Connect Extra you can listen to various programs through the day. They also have a Facebook page.

Blind Living Radio is hosted by Harley Thomas with the help of special guest hosts.  They say: “We will cover topics ranging from life with a guide dog to advances in assistive technology. Nothing is off limits on Blind Living Radio.” From iTunes (see below) for Windows and Mac.

BrightFocus Foundation has a list of audio files. It is listed as Macular Degeneration: News You Can Use.  This app allows you to access the podcasts from the BrightFocus Foundation. Currently, there are 40 of them. You can play them on their website or though iTunes or through the App Store on your iPad, iPhone and iPod.

This website called Newsreel Magazine files that you can download.   The 3 hour monthly magazines consist of contributions from subscribers, often in their own voice. Formats available: instant download (mp3 file), NLS (National Library Service digital cartridge, audio CD (mp3 files), and 4-track cassette. They also have a Facebook page.

Talking Computers is a free monthly audio magazine about using computers with low vision.  Available as a download to use with iTunes through the App Store on your iPad, iPhone and iPod.

Mystic Access is packed with podcasts regarding the use of computers. Available to play from webpage or download.

Audio Internet Reading Service of Los Angeles (AIRSLA), an Internet-based radio station that broadcasts to those who have limited or no vision.  The range of topics they have is amazing, everything from periodicals to using technology to cooking.  Click here for list of categories of podcasts. You can click and listen for free to them on your computer, iPad, iPhone or iPod.  They also have a Facebook page.

Blind Planet has a variety of types of podcasts including tutorials and reviews of technology topics. Available to play from webpage or download.

Most popular sources for a variety of podcasts

TuneIn Site says that it “enables people to discover, follow and listen to what’s most important to them — from sports, to news, to music, to talk. TuneIn provides listeners access to over 100,000 real radio stations and more than four million podcasts streaming from every continent.” There are local stations as well. They have a Facebook page.

  • You can play the show directly on your desktop/laptop or download them.
  • Apps available for iPad and iPad (App Store) and Android (Google Play)
  • free and premium (subscription) options available.

Stitcher Radio for Podcasts  Here’s the description: “Listen to your favorite news, comedy, sports and talk radio shows and podcasts ON DEMAND from your iPhone or iPad. Discover the best of NPR, CNN, Fox, BBC, WSJ, Adam Carolla, Joe Rogan, Rachel Maddow, Rush Limbaugh, Fresh Air, Freakonomics, Radiolab and over 25,000 shows, podcasts and live stations. Change the way you listen to radio – on your schedule, not the schedule of traditional stations.” They have a Facebook page.

  • You can play the show directly on your desktop/laptop or download them.
  • Apps available for iPad and iPad (App Store) and Android (Google Play).

iTunes They say they have hundreds of thousands of free podcasts and that you can create your own. This link will get you to the ‘How to’ about podcasts.

  • You can play them through the iTunes software that you download onto a Windows or Mac computer.  On your iPad, iPhone or iPod, if you are keeping your version of IOS up-to-date, there is an app called Podcasts. If it’s not there, you can download it from the App Store.  To be honest, I do not know if you will be accessing the same podcasts or not.  I do know that you can sync them between your Apple devices: click here for the instructions.
Other podcasts and audio file sources

NPR This is a link to the podcasts on their website.  There are also iPad & iPhone apps to download from the App Store.  Their podcasts are also available through iTunes, TuneIn and Stitcher.

NY Times This is the link to the podcasts on their website where there are podcasts for music and book reviews.  There are iPad and iPhone apps by subscription.

CNN This is a link to the podcasts on their website.  There are also iPad & iPhone apps to download from the App Store.  Their podcasts are also available through iTunes, Tunein and Stitcher.

Time magazine This is a link to the podcasts on their website. The subjects include entertainment, politics and more!

Coming eventually: How can I keep up with my reading with e-books and audio files?

Do you have a favorite podcast or source for podcasts?  We’d love it if you’d share it.

Cats and Dogs

Cleaned a bathroom, vacuumed, wrote a few checks, worked on cleaning the pool, even reviewed my lesson plan for Wednesday. How much work do you want from an old lady? Especially on a weekend. Besides, weekends are when I really get my page ideas. I inundate Lin. Drives her crazy. [Lin here: sometimes she does but that’s OK.]

Anyway, I have misplaced the cord to my reader. This page, therefore, starts out on a cautionary note. Do not do that!!!! I miss the dang thing terribly. I think the cord is at the office. A friend is coming to take me to ‘killer’ yoga and she promised to run me around to look for it. Keeping my fingers crossed.

The lesson learned? If you cannot be organized, buy spares. I am going to have to see if I can get a replacement cord. Maybe two.

Be a Boy Scout and be prepared.

Moving on, I saw a Reader’s Digest article on forgiveness. The lead paragraph said apes forgive. Cats don’t. I found that not to be surprising given that apes are highly social and cooperative. Not so much cats.

You know the old saying: “dogs have masters. Cats have servants.”

Anyway, way off the reservation again. When I saw the title of their article I started to think about self forgiveness. I would suspect if you are anything like me, you get disgusted with yourself. The reader is missing its cord. I paid the gas company the wrong amount. Zeros look like sixes; right? Jeez, Sue. Get it together.

I ask for ‘negative’ feedback. Crazy maybe but true. I feel I need to know where the problems have been cropping up. Cannot fix it if you don’t know it is broken. I don’t let people help me carry my stuff.

I am the one who developed this crap. My stuff. My burden.

I have fielded my share of funny looks. People want to help. Why do I want to struggle and be a martyr? I am supposed to stop being so hard on myself.

Easier said than done but they do have a point. According to Timothy A. Pychyl writing for Psychology Today, “the steps to self forgiveness are to acknowledge you did something wrong, experience guilt and overcome these feelings.”

OK. First off, I am probably the only person I know who actually believes I did something ‘wrong’ by developing macular degeneration. I would not criticize someone for developing cancer and having subsequent problems. What makes me so damn special I can never have a problem?  Time to get out of the Supergirl cape.

Feel the guilt? Been there. Did that. Got the T-shirt. But baseless guilt? Probably. See above.

Last point is to “overcome the feeling.” Well, ya know what I said about easier said than done?

Pychyl had nothing to say about it. Prevention magazine suggests not wallowing. Penance not required. Move on. Don’t draw other people into your stuff. It is your nonsense.  Don’t burden them with your Superman/Martyr routine.

Michaud, the woman writing the Prevention article, also said you might try 12 different things: categorize the offense, articulate the offense and how you feel, understand what you want, recognize your unrealistic expectations, identify the hurt, “hit the stop button”,  apologize, practice positive emotion refocusing, make amends, stop telling the story in which you are the villain, put things in perspective and give yourself a break.

Lin is super with putting in links and I am imaging there is blue lettering in the paragraphs above. Follow the links.

Cut yourself a break. AMD – not your fault. Not mine either.

Continue reading “Cats and Dogs”

Highlight: Why should I be concerned about ‘blue light’?

There’s been a lot of talk lately about ‘blue light’.   You’ve probably heard that it is bad for those who do not have AMD and also for those who do.  The question is what is it and what evidence is there that it is bad for us?

Click here for a very extensive article that:

  • explains the visible light spectrum and tells how it affects our eyes.
  • provides references to blue light research.
  • points out that our cornea & lens (refer to the illustration) filter some of the blue light and that the yellowing of the lens in the development of cataracts helps to filter out blue light.  For that reason, when the natural lens is replaced with an intraocular lens (IOL) in cataract surgery, we lose that protection.  Some doctors insert an IOL that is tinted to block blue light.   Some say that if this is done, it cuts down on our ability to adapt to dark conditions which causes some to have poor night vision.
  • explains the terms used to refer to visible light.
  • discusses the difference types of lamps with pros and cons and gives specific descriptions of what’s available.

Click here for another great article about how the violet and blue light of the UV spectrum can worsen AMD.  The article says that the sources of violet/blue light are “sun (main source), computer screen, phone & other mobile device screens, full-spectrum lighting (ie, used to treat Seasonal Affective Disorder (SAD), fluorescent lighting, LED lights, high intensity mercury vapor lamps (for night sports and high-crime areas), and xenon arc lamps.”

Click here for a more technical article that addresses the effects of blue light on sleep and eyestrain.  It also answers the questions:

  • How does blue light affect eye strain and sleep?
  • Should I block all blue light?
  • Are my eyes just sensitive to blue light?
  • What are software solutions and physical blue light filters?

What can we do to block blue light?  Here are some suggestions:

Do you spend a lot of time on the computer and other electronic devices?  

Click here for an article that describes some ways we can be protected from the blue light emitted from them. It also describes the new feature called Night Shift for the iPhone and iPad that filters some of it.  For Windows devices, there is an app Windows f.lux.  Click here to find out how to download and install it.

You can also get screen protectors and ‘computer glasses’.  I talk about them below.

Do you spend a lot of time outside?

You need to wear sunglasses that filter out the blue light from the sun. Click here to go to a post about how to choose sunglasses.

Do you need eyeglasses or contacts?

Even if you have IOLs (the lenses implanted when cataracts are removed) that block blue light, my eye doctor told me that the amount of blue light filtered isn’t that significant so additional blocking is advised.

You can get the lenses coated to filter out blue light.  Kodak Bluelight Reflect is one. Crizal Prevencia is another.  Click here for other products. Talk to your eye doctor or optician about what they offer.

As far as coating for contacts, that’s available also.  This article talks about tinting for cosmetic reasons but there is also a section that talks about adding a UV coating to them. At the time this article was published, they said none of them should replace sunglasses with good UV filtering. To be honest, I don’t yet know if you can have blue light coating on contact lenses.

Do I need special ‘computer glasses’?

If you do not wear eyeglasses or wear them but don’t have a good protective coating on them, you might consider a pair of glasses with protective coatings but no prescription to reduce glare and blue light transmission.  Even if you have IOLs (the lenses implanted when cataracts are removed) that block blue light, my eye doctor told me that the amount of blue light filtered isn’t that significant so additional blocking is advised.

Click here for a good article about what computer glasses are and how they work.

Can I filter blue light from my electronic devices without specially coated eyeglasses, contacts or ‘computer glasses’?

Yes, you can buy screen protectors for your devices.  Click here for a very extensive discussion of them.

Do you need cataract surgery?

Talk to your doctor about the tinted IOLs that can be inserted (refer to first article above or click here).

What kind of indoor lighting do you have?

Again, the first article above gives a great overview of the terms used to refer to visible light & discusses the different types of lamps with examples.

  • Neither Sue nor I get any commissions from any of the products included here.

Highlight: When should I get my eyes checked?

Did you recently get a diagnosis of AMD?  Was it such a shock that you don’t remember much about what the doctor told you about when to get your eyes checked?  Or did you not discuss it at all? The latter situation is all too common.  Of course, a lot of that depends on the type of AMD (dry or wet) and the severity.  It is VERY IMPORTANT that you treat any vision loss as an emergency.  Call your eye doctor as soon as possible.

Here’s a great video showing how an eye doctor should examine your eyes and how he/she would be able to detect AMD.

In the video, the narrator states that everyone who is 60 and older should have a comprehensive dilated eye exam once a year. Of course, if you are having problems you should NOT wait a year, call for an appointment as soon as possible.  However, if you are at higher risk due to race, age or family history of AMD, that may mean you will see your eye doctor more often.

Between eye exams, you should be monitoring your own vision using an Amsler grid on paper or on a computer, tablet or smartphone.  Here is a great article explaining the importance of home monitoring and showing an Amsler grid, where to get one, and how to use it. It also describes the ForeseeHome Monitoring Device which is connected to the doctor’s office.  Click here for that article.

 

 

 

Highlight: Books

Here are some books about various aspects of AMD.  Are there others that you can recommend?

Books

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”

Doctor, Doctor, It Hurts When I Do This

Hi, it’s Linda (Sue calls me Lin).  I’m hijacking Sue’s journal. I need to vent. Did the title grab you?  It’s the first line to a joke that ends with the doctor saying “Then don’t do that!”

First, I do not have AMD.  My dad had it so my risk is higher than ‘normal’ so I’m concerned about developing it in the future.  I’m here because of and for Sue. And now for you.

I went for my annual eye exam with the doctor who has been doing mine for 25 years.  He’s a great guy, a great doctor.  He helped me through a tough time last year when I had cataract surgery & developed PVDs (Posterior Vitreous Detachment) in both eyes which is common.  I also have some crazy thing on my corneas called map dot fingerprint dystrophy.

I’d gone to my appointment armed with a printed page from our website to give to him with the hope he’d eventually take a look at it, maybe even post it on their website.  Granted, he was busy but in the past, even when he was busy, he took the time to talk to me.   After the exam was over, after he told me that my macula was healthy, he asked how I was doing.  I started “My friend of 40 years who is my age has AMD and a few months ago her vision became so bad that she had to quit working and driving.”  He stopped me with “I don’t want to hear about that [AMD]..it scares me!  My mother went blind from glaucoma from the shots!” I didn’t know what else to say but “I’m sorry about your mother’s vision.”

OK, I was not there to be checked or treated for AMD.  He had other patients after me.  I decided not to leave the website paper with him.  Maybe if I didn’t know now what I do about the disease his reaction wouldn’t have bothered me but it did.  I’d looked at his rack of brochures & the only one on macular degeneration was from the company that makes the AREDS/AREDS2 supplements that many doctors recommend (I have LOTS more about supplements in another post; I’m working on expanding it, actually).  What’s up with that? Are there no other handouts? Since the supplement company is making money from what the doctor recommends, I’m sure they sent him the brochures for free.

As I drove home, I kept thinking about why his reaction bothered me so much. I figured it out. When I started to do research for Sue and for this website, I kept hearing about the visits people had with their eye doctors when they first got an AMD diagnosis.  Here are just a few statements with a brief comment from me in brackets:

  • “He told me that it would progress slowly, maybe take 10 years to get worse so don’t worry about it.” [every person’s case is different & there is no definite time frame.]
  • “There are vitamins that you can get that are expensive but buy the cheaper ones.” [The subject of vitamins is more complicated than just going by price.]
  • “Take these ‘eye vitamins’ and also take a senior formula multivitamin.” [TOO much of some vitamins/nutrients CAN be harmful!]
  • “She didn’t tell me much, she just said that it’s an age thing.” [Even though AMD is more common as we age, many people get it when they are much younger; some people never get it.]

My eye doctor actually said to me today “you don’t have macular degeneration…yet.” Is he saying that I will eventually get it?  I know better, thank goodness.

Basically, patients are getting little to no information and downright inaccurate information from their eye doctors.   By navigating our website, you will find that we explain why each of statements are just not correct!

Which brings up the ‘head in the sand’ issue.  My eye doctor voiced his fear of the disease & I believe that he was doing that to me as Linda, not to me as his patient.  I hope that for his patients who DO have AMD, he is supportive & will refer them to someone who can educate them if he chooses not to do so.   But to know that HE is afraid of AMD wasn’t very comforting.

At least in the US, people are coming out of their eye doctor’s office thinking:

  • “I have nothing to worry about because my doctor said not to worry”
  • “This is too scary, I’m not going to think about it”
  • “I am so confused, where do I go to get more information?”

I’m guessing that many of you had that last one and that’s why you are here!

So tell us what YOU were told when you first got your diagnosis? Just leave a comment below. Continue reading “Doctor, Doctor, It Hurts When I Do This”

Busy, Busy, Busy

Saturday and Sunday were nasty, rainy and cold. While I got up and went to Zumba Saturday morning, that was about the only structure I had all weekend. I pretty much goofed off the rest of the time. I did little substantive work on Saturday and even a little less on Sunday.

This was not me. This girl can rock a to do list. I thrive in crazy busy. My days fly when one task or obligation flows into another.

It got me thinking about lack of things to do. Lack of outside structure. Some people crave days they have no obligations and need to do nothing. That sort of scenario scares me to death. It really scares me if I think of 30 years worth of that. Yikes.

So, one of the ways I cope is to stay busy. Activities are a distraction skill in DBT speak. They come under distress tolerance. I talked about that.  But what am I going to do someday when work is done and my hip won’t hop? What will I do when I have too much free time?

Understanding Newton’s laws of motion is actually helpful here. They aren’t just for physics any more! An object in motion tends to stay in motion. An object at rest stays at rest….unless an external force is applied to it.

If I don’t want lethargy to set in, l need to keep going. If things falter,  I need to apply an external force.

A way to apply an external force is by establishing habits and routines. In speaking of recovery from addictions, the National Institute of Health declared habit and routine to be good ways of avoiding excessive free time. The addict does not need free time because he may fill it with abusing substances. If I am upset and have spare time, I fill it with negative thoughts and worry. Not a plan.

The paper from NIH goes on to say establishing routine helps you feel more in control and build confidence. They suggest a regular routine that includes self-care (eating, sleeping, hygiene), a daily practice like exercise, meditation or prayer, meals, chores, etc.

One of the things I like about routine and schedule is I always know what is coming next. You avoid the fumbling and sinking feeling of being at loose ends. Like I said before, when I am at lose ends I think too much.

The NIH paper also talks about balance. They talk about deciding how much time you will dedicate to each of the items on your activities list.

I think that is a fantastic idea. I started a variation of that idea in my own life years ago. I based mine on values: learning, nature, exercise, friends, etc. I try to do something related to each value each day. If I realize I have missed addressing a value, I purposely include it the next day. Sort of keeps things from going too far in one direction.

Activities, routine, balance. Good stuff for coping.

Continue reading “Busy, Busy, Busy”

Pet Therapy

Lin has been asking people what topics they would like me to address when there is a lull in the action and I have no idea what to say. The big winner seems to be coping strategies. People want to know how to cope with the stress of AMD.

Remember, this is not an advice column. It is not therapy. I can give you some idea of what I am doing to cope because, after all, this is my journey and journal. Maybe something I am doing will be helpful for you, too.

Right now the beastie baby is waiting to go for her walk. She does not know it but she is a great benefit to me. The American Heart Association and other groups have proven being with animals is a great way to deal with isolation and depression. People who have animals have less of the bad neurotransmitters in their bodies and more of the feel good ones than the people who do not have animals. Pet owners live longer and go to the doctor less than non-pet owners.

I am a dog freak, totally and completely, so I am happy to tell you my side won! Yippee! What? Oh, the dogs versus cats debate. Dogs do more for our well-being than cats. But then what would you expect from an animal that threw its lot in with man 30,000 years ago? Cats are late comers with domestication occurring about 9,000 years ago.

But enough of the fun facts. Dogs get you into some good life habits. The puppy girl gets walked every day short of a typhoon or three feet of snow. And guess who walks her. Her Mommy!

We walk out in fields and wooded areas. Outside! Fantastic for me because – other than my being raised a country girl and simply liking it out there – being in nature is good for me. In addition to the vitamin D I get from sunlight and the clean air I get to breath, nature has some other fantastic benefits. Nature can improve attention and cognitive functioning. Green spaces promote healing. People in hospitals with gardens get better faster. Added to that are the stress and depression relief benefits that being in nature provides for us.

Mom Nature does take care of us kids. I like to visit Mom frequently.

So, those are a few things I do regularly to maintain my health, both physical and mental. They help me cope. Perfect remedies for everything that ails me? Lord, no. To borrow from DBT wisdom again, a little improvement is better than no improvement at all. It is black and white thinking to feel something has to work 100℅ to have value.

I use the strategies I can even if they help just a bit. Hopefully putting them all together will get me nearer to the goal.

Continue reading “Pet Therapy”

Beast of Burden

Some of you may recognize the title as the title of a Rolling Stones song Beast of Burden. Can’t help it, I love music!

This is going to be odds and ends. Hopefully a theme will develop. Then again, maybe not!

I just ordered a rolling cart. I took my CCTV and some work materials and a full-size iPad and my purse with several low vision toys in it across the parking lot to the other school building today. I carried them all and nearly broke my back.

I don’t know if anyone else out there has this problem, but I have acquired a lot of stuff and it is heavy!

Apparently, that is something they don’t tell you in visually impaired school: having all of these toys can turn you into a pack mule!

Another thing they don’t tell you is what to do with all the cords. In addition to all of the usual things that need to be plugged in I now have a CCTV and a reader and a Books for the Blind player and an extra tablet and the list goes on.

Not only do you have all of these electronic toys that need cords, but they need the correct cord. The smart phone wants nothing to do with the iPad charger and the iPad wants nothing to do with the reader charger, etc. You get my point? All the more fun for a disorganized, visually impaired lady.

Of course, life would be a lot nastier without my toys. I just used my iPad to look up a Talking Book to play in my cute little player. I found the new Jeffery Deaver novel available to borrow for free. That is the same novel I just saw available in hardcover only for something like $16. Not sure how many Lincoln Rhymes fans get Talking Books so I might have to wait a bit. However, it will probably be less time than I would have to wait for it to come out in paperback. I am cheap that way.

I am wondering how long you can keep these tapes. I am also wondering how much listening to audiobooks some visually impaired folks do. The order form was old-school, paper to complete with a – gasp – pen. The thing of it is, it was three columns wide and maybe 20 lines deep, front and back! If your average audio book is something like 12 hours, that is a whole lot of listening.

I just ordered one. I love to ‘read’ but I am not good at sitting that long. I am also trying to stay involved and get back to work full-time. AND I want to check out the BARD offerings. I got the acceptance very quickly but have not gotten around to setting up my account. I seem to be very busy these days – doing visually impaired stuff; ya know?

Just never realized this visually impaired business could be so demanding! Aha! A theme!?

Continue reading “Beast of Burden”

Highlight: What do I do if I get a diagnosis of AMD?

Getting a diagnosis of AMD can be a shock.  We’ve found that many eye professionals don’t really do a good job of answering a patient’s questions. Also, you may not be able to ask questions right away.  Many people in this situation turn to the Internet to do their own research like we did.

The Prevent Blindness organization has a system where you get a customized guide with resources, tips and steps that you can take to you be proactive about protecting your vision.  All you have to do is to answer questions that you are given.  You can print the guide and you can view it on a computer, table, smartphone.  You can also go back and update your answers to get an updated guide.

Click here to go to Guide Me.

Be a Volunteer

Back on my handicapable rant again, so hold on!

Today is a sort of uneventful day. My big responsibility today is waiting for the dishwasher repair guy to come. I get to clean up the mouse poop when he pulls the machine away from under the counter. Wow.

So I got up late. Still running around in jammies until about 9:30. Then I said to myself “get dressed, girl! You are not making a habit of this!” I got dressed and started to think.

Now me thinking is always a dangerous proposition. Weirdly fertile mind here. But what I thought about was this: if and when I retire what am I going to do with myself?

And what am I going to do with myself since ‘myself’ is now visually impaired?

Looking online I made a discovery. Everyone wants to help us and nobody wants us to help them! Now I might be wrong – and considering my eyesight I very well could have read it wrong – but there did not appear to be one single site devoted to things visually impaired, low vision, whatever folks were capable of volunteering for.

Now granted, we are all different and we all have different capabilities and interests. Also, we are not all THAT different from the fully sighted. We just can’t see! Maybe people just think we will go to our club or our church and find some way to contribute. But do you know what I think? I think a lot of people don’t.

So what would I do? Maybe take my CCTV to a day care and be a volunteer ‘grandma’. I was working in a preschool the other day and every child had to examine a stuffed animal or a book on the CCTV before I could get to work.

Kids are wonderfully accepting and accommodating. I was just the nice lady who could not see too well.

Maybe I would volunteer with the local animal rescue group. I imagine I will still be able to walk dogs and clean cages. Cleaning up dog poop may trump vacuuming up mouse poop!

So maybe I have half a plan. You – or at least I – can only watch so much daytime TV before I curl up in the fetal position on the floor. I can only “do lunch” so many times. Might as well do something productive. But as for ideas? I think we are all on our own.

Linda here: Since Sue wrote this, I’ve been able to find one webpage that talks about volunteering for folks with low vision.  Click here for Finding Volunteer Positions As an Individual Who Is Blind or Visually Impaired.

Continue reading “Be a Volunteer”

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