Category: Highlight

Bird Listening

I just ordered a $20 monocular.  That is sort of half a pair of binoculars. You put it in a pocket or hang it around your neck. I will let you know if I like it. If I like it, there are a variety of better ones for sale. I might want to upgrade.

I probably should not whine. My AMD is not horribly advanced. However, I am tired of not knowing what I am looking at. We were on the river again this morning and half the time I had no clue what I was looking at. Was that a duck or a stick jutting out of the water? Is that a dead fish or a floating leaf?

Now granted, I probably don’t need to know if it is a dead fish or not, but I would like to know. The Charles Bonnet syndrome was temporary. I am no longer seeing ‘weird shit’ or thinking “Wow! It’s a unicorn!” Instead, I think something like “OK, girl,exactly what ARE you looking at?” The problem with that, though, is that dark spot the Charles Bonnet might have interpreted as a bear could really be, well, a bear! It would probably be in my best interest to know that. You know that  It really is a bear and not a misinterpretation due to faulty input. (Like every other computer: garbage in, garbage out.)

I am hoping a monocular might help with all that. I would like to see the birds, for example. We have herons, kingfishers and even bald eagles. I cannot get close enough to actually see them any more. A monocular might help.

Today on the river I was practicing my ‘bird listening’.  I know a few of their calls from long exposure. The ‘clatter’ of the kingfisher and the ‘rusty gate’ of the green heron. (My descriptors. What are the ‘real’ ones?). I heard the cat-call of the cat bird and something nicely melodious. No clue what it could have been.

Listening is good but listening and seeing is better. My O&M guy is coming next week. He told me he would teach me some basic techniques for using a monocular. Not sure they are going to be techniques for bird watching or seeing if something is a dead fish (or seeing the vixen and kits who are supposed to have a den up the hill from the house!). However, I expect they can be adapted to serve.

Change. Adapt. Modify. Will let you know about the monocular. Continue reading “Bird Listening”

O & M

The orientation and mobility (O&M) guy was here last evening. VisionAware, American Foundation for the Blind, says orientation is the ability to know where you are and where you want to go. Mobility is the ability to move safely, effectively, and efficiently from one place to another. In my case that means not falling over dishwasher doors and NOT becoming roadkill.

I had been impatiently waiting for the O&M specialist for close to three months. Having him show up was sort of like hitting the lottery. The regional Blindness and Visual Services (BVS) office is supposed to have three orientation and mobility specialists. It has none. The man who came out to see me is a freelancer and BVS contracts with him. This truly is a rare breed.

Anybody know anybody who needs a good job?  The O&M guy said he thought the average pay is around $40,000. The website I found said $52,000. Not bad.

I was told Pennsylvania has two colleges that offer degrees in orientation and mobility. Salus University is just outside of Philadelphia. It looks as if Salus offers both a certificate program and a master’s degree program. Much of the coursework is on-line although weekend and summer trips to complete the practicum part of the course are required. Also, the Salus website indicated there are a number of states that will fund scholarships if you are interested in becoming an O&M specialist.

The University of Pittsburgh, aka Pitt, also offers master’s degrees and certificate programs in orientation and mobility. Much of their classwork is done on-line as well. There are, of course, on-campus requirements.

Pitt lists a whole bunch of cool things future O&M specialists get to learn. They not only learn how to use mobility devices but they also learn how to make use of residual vision and increase visual efficiency. They learn how to teach the use of auditory, visual and tactile maps and also to teach the ability to use mass transit.

I will get into some more of the history and skills of orientation and mobility on the next page I write. Right now suffice it to say O&M specialists are needed all over the country and possibly even around the world. Jobs to do worthy work are going begging. If you know anyone who is looking for a rewarding, fairly well-paying job, suggest he look into becoming an O&M specialist.

Writter 8/4/2016

Continue reading “O & M”

SSDD

SSDD = “same shit, different day”. I don’t have a lot to do today and what I could do I don’t want to do. Still in the “summer of my discontent” (from Mark Roeder, about the coming of age of a gay teen. Sounds familiar because of The Winter of My Discontent, a novel by John Steinbeck with the title taken from Shakespeare’s Richard III. We writers tend to borrow liberally from one another….please note I just put myself in a category with Steinbeck! ::grin::)

Never thought of boredom as being a modern phenomenon but Wikipedia says it is. It also quotes some modern philosophers and scientists on how boredom is an existential disease (“Guess what, Ma! I have an existential disease!”). Boredom has to do with lack of investment and lack of meaning. Here we go around in circles again. Back to mindfulness and Frankl.

Don’t worry. I am not going to start quoting Kierkegaard to you. What I do want to talk about is Bejeweled.

Now, I know many of you are not computer savvy and you are definitely not gamers. When I looked for computer games for the blind and low vision crowd, I found a couple of dozen of them. I did not even bother to check them out because I do not know my rear end from a hole in the ground when it comes to gaming. I gave that job to nephew #1. Hopefully he will take at least a cursory look and report.

What I do know is there are a number of free games in the Apple App Store and they can help to pass the time. I downloaded an old favorite on my iPad, Bejeweled.

220px-Bejeweled_deluxe_sc1
Game Bejeweled play board

I used to spend hours playing Bejeweled. It is basic and addictive. All you do is move different colored ‘jewels’ so they line up at least three in a row. When you line them up, they ‘explode’ and disappear and you look for more jewels to line up. The game is over when there are no more moves.

Did I mention it is free? Like everything else in the world that is ‘free’, someone somewhere is paying. In this case, the game asks for your age and – low and behold! – a whole series of ‘age appropriate’ ads run at the top of the page.

I was a little perturbed when I had a poor game and the ad for Alzheimer’s came up! I assume the ads are random; aren’t they?

Anyway, Bejeweled is free and only insults you sometimes. The visual discrimination required is a combination of color and shape. I have no problem with it. You can hook your iPad up to the TV if you need it to be bigger.

Got it? OK. Now who can beat 159,000 points?!?!?!

written 7/27/2016

Continue reading “SSDD”

Highlight: Once my wet AMD is stabilized, does my eye continue to worsen?

There’s been some confusion in what eye doctors have told patients about the disease process in AMD and there are 2 questions that have come up in the Facebook group: 1) does wet AMD start as dry? 2) once the bleeding is stopped in the wet form, does the deterioration of the macula continue, ie, does the dry process continue?

About question 1, through my research I’ve found that a lot of articles don’t specify this, they just say there is the wet kind and the dry kind. However, most descriptions from reliable sources say YES, wet AMD starts as dry but sometimes the dramatic symptoms from the bleeding gets a person to the eye doctor & they never got the diagnosis of dry where the early stage has few symptoms.

About number 2, here’s the clearest answer to that question I can find:

Click here for the full article.  There is at least one error in the transcript.  In the second paragraph of Dr. Gorin’s response that starts with “We understand a great deal more in recent years because of the genetics studies that have been done.”, there is the word ‘bruising’ which should be ‘drusen’.

In this article, here is a quote is from the transcript of a telephone discussion with Michael B. Gorin, MD, PhD, an ophthalmologist from UCLA who is devoted to research and clinical care of hereditary retinal disorders, especially age-related macular degeneration, retinal dystrophies and other medical retinal conditions.

Dr. Gorin:

“But for a group of patients, it can diverge into two different paths of progression. One is where the cells that care for the retina begin to die and you start getting areas of atrophy—that is, cell loss—and on those areas of cell loss, you lose areas of vision. And that’s called atrophic, or advanced dry macular degeneration. That’s usually slower, but it can be very problematic for people, because it can create little holes in their vision and ultimately, if those holes get larger and coalesce, one can lose central vision from that. The second pathway—and by the way, they are not mutually exclusive, some people can have both of these things going on—is because of the damage to the cells underneath the retina, it triggers the formation of a blood vessel, either a blood vessel underneath the retina or sometimes even in the retina. That blood vessel is an abnormal growth; it’s not a tumor or a cancer, but it’s a blood vessel that’s stimulated to grow, and it unfortunately leaks and can bleed, and because of that leakage and bleeding, you get the term ‘wet’, because the fluid is leaking into the retina. Over time, that accumulation of blood and fluid disrupts not only the architecture of the cells, but can lead to fairly rapid vision loss. So, wet macular degeneration treatments at this stage are really focused on trying to prevent the ongoing growth and leakage of these abnormal blood vessels. The treatments do not stop the underlining degenerative process or the causes of macular degeneration in the first place. A person who is having successful treatment of the wet form of macular degeneration is really not having their macular degeneration stopped. The treatment is blocking and limiting the amount of damage that occurs.”

XYZ Transit

I went to the doctors today, two of them. I have been trying to group my appointments. Since I have had eye problems and have to get rides, my doctors’ appointments have become events. Better to group them on one day.

Not sure where everyone came from at the ophthalmologist’s office. There was not a seat to be had! The aging of the population and the prevalence of vision problems in the elderly was apparent in that room.

Dare I say I was the young chick of the group? Of course I dare!?

My ophthalmologist said he could not see any growth in my geographic atrophy – aka the divots – in either of my eyes. There probably is some but would require a more precise instrument than his own eye to observe. No noticeable change is good.

My vision was a tad better in one eye and a smidgen worse in the other. I think it was just random variation. Sometimes I am better at ‘cheating’ and using my peripheral vision and other times worse. Sometimes I hit what must be an intact spot on my retina and everything flashes into focus for a fraction of an instant. When it ‘catches my eye’ I try to look at it and it is gone. Real pain in the posterior. It was there and then it was gone.

My ophthalmologist asked about the clinical trial. Damn if I know. I have been enough of a pain in the posterior to the head researcher I have been promised I will be first called when things get moving…. whenever that is. Squeak.

I showed my ophthalmologist my new toy, the Justand. He was interested. Asked if I were going to the support group but then said I could probably lead the support group. Yeah.

A lot of research and adjustment over the last four months. I have learned a few things I could share.

My primary care physician is worried about my blood pressure. Might have something to do with the things that have been happening recently. He wanted me to stay a few hours and have my pressure taken over time. That would be a guaranteed way to get me to blow my top!

Going for the van to leave was actually scary. I was to be picked up at the main entrance to the hospital…..along with 11 million other people! So, I exaggerate but you get my point. It was busy. And 80% of the transportation coming up to the front of the building was white. The color of the van I was waiting for? White, of course.

I was flummoxed as to how to discern my van. I don’t see all that well, ya know. I put on my telescope glasses but with my eyes dilated I could not see even then. Too bright. I was on the horns of a dilemma.

I called the transportation people and – while concerned – they were not a lot of help. I was waiting for XYZ Transit and the van was white. Really??? No shit. She acted as if she had never had a visually impaired patron before. Don’t they have a protocol for finding patrons who can’t find them? Apparently not.

I finally just wandered up and down the line of vans. Practically putting my nose on the side of each one. My van was there. When I told my driver my concerns, he said he would have found me. Not sure how. I am new to transit. I have had a half a dozen drivers so far. They don’t know me. I don’t know them. Problem situation.

Still not sure how to work this out. My husband suggested a sign on a pole. XYZ Transit! Maybe I can be the lady in red or something. Look for the lady in red! Mysterious.

Just not sure. Any thoughts?

Continue reading “XYZ Transit”

Each One, Teach One

Ever heard of “each one, teach one”? According to Wikipedia this phrase started out as a ‘policy’ among slaves in America. If you as a black could read it was your obligation to teach others. Frank Laubach (a local boy by the way) used it in his campaign to increase literacy worldwide.

“Each one teach one” is a way to spread knowledge from the grass-roots.

From my interactions here and from a Facebook post Lin shared, I think we need to do the same thing for knowledge of age-related macular degeneration.

My yogini’s mother gave me a ride last week. She is a very nice person about my age. She sincerely commented it was sad I had gotten such a “rare” eye condition.

“Rare”?!? She was shocked when I told her our number is legion (makes us sound a little demonic; doesn’t it??) and that AMD is the leading cause of blindness in the developed world. She had never heard of AMD until I was stricken.

One of the Facebook people expressed concern about people posting signs, etc., without any consideration for the low vision folks. She really thought these people needed education!

Which brings me to another quote. “If not you, who? If not now, when?” That one has been hijacked by several American politicians but an original version is credited to Hillel the Elder (and who said my pages are not educational?!?). [The original quote from Hillel the Elder was “If I am not for myself who is for me? And being for my own self, what am ‘I’? And if not now, when?”]

As I am sure you understand, it means people need to take personal responsibility and make a difference in the world. And we need to do it now.

I would ask each and every one of you to teach one, or two or three about our shared condition. Talk to your neighbors, your colleagues, the people at your place of worship. Especially talk to your children and grandchildren.  AMD has a hereditary connection and while I suspect they will have either a cure or strong preventative measures within my life time, susceptible people  still need to know the symptoms and be alert.

Get the word out. Focus attention on AMD every chance you get. Don’t be ashamed you are visually impaired. Use your condition to help others learn. Each one teach one today.

Continue reading “Each One, Teach One”

Are You Organized?

I have said this before but I have not gotten any better: when God was giving out organization skill I must have been in the wrong line! No clue what I thought the organization line was but I was not in it. Probably lost my schedule for Heavenly Gift Disbursement.

Today I have been trying to fill out the paperwork to collect on the trip insurance. They want all these dates and amounts and stuff.

Pretty sure I have it all. Somewhere. I never throw things out. That probably contributes to the problem.

Anyway, for you for whom there is still hope, I thought I would look up some ideas for organizing our lives. Let’s see what the experts say.

The experts go right to the heart of the matter: eliminate clutter. Really? What would I have if I did not have clutter??? Queen of the Pilers here [In terms of organization, pilers are those who create piles instead of files!]. Anyway, the experts suggest we buy organizers and label them so we know where things are. Bills and important papers can be put in color coded trays. (Was red for bank statements? No, I think that was blue.)

Food in the fridge should be organized in a way that makes sense to you. Everyone in the family needs to put things back in their places. It was suggested things in the refrigerator only be stored one item deep. Not sure how that would work.

Might need to clean the fridge…or buy a second one…and a third.

To organize your closet and avoid fashion faux pas the experts suggest putting outfits together on the same hanger ahead of time and always wearing those pieces together. Matching socks can be put in the same Ziploc bag. If you don’t want your red underwear showing through your white top, the experts suggest you store the wilder unmentionables in a different drawer or put them in an odd shaped container.

Putting labels on possessions was also suggested. The last time I had labels on my possessions I was in kindergarten and the labels all said Susie. What I think the experts mean is taking a black marker and labeling what the garment is. They also suggested using other coding systems, like pins or a string with knots. For example, a string with two knots would mean it was a yellow blouse. One knot might be for a white blouse.

All of which is great but it doesn’t help me remember the date I bought the trip insurance.  For that I have a little thing called a travel agent. When I cannot get my act together I lean on someone who can. And that is my ‘expert’ advice on organization.?

Click here for some organization ideas for both pilers and filers.

[Lin/Linda here: I’m a 3rd type of organizer, I’m a hider as in “out of sight, out of mind”.  Makes my husband nervous when I’ve been away from him for more than a day!]

Continue reading “Are You Organized?”

Calendar Girl

Hi. Hope you are well. Lin says we are up to 85 subscribers (and 111 Facebook group members). Wow. Humbling and more than a little scary. Feel free to make comments and suggestions. Just be kind. Constructive. My Teflon mind is not 100% effective.

My BVS case manager and his new boss were out. She is new to visual rehabilitation and was impressed with all of my toys. She said something about ‘success story’ and ‘calendar’. Apparently my body never rated my becoming a calendar girl but my willingness to use assistive technology may just do it!  Ridiculous.

There are hundreds of thousands of us living the life and getting by every day. Maybe we can all be calendar girls (and guys)!

My habilitation person comes out on Monday. She is supposed to load the apps onto my new iPad. That may be the last I see her for a while. I am supposed to be moved to a maintenance status fairly soon.

Still have not heard a thing from the mobility guy. I know my case worker has rattled his chain several times but it has been to no avail. Wondering if that will happen before summer is over.

I am trying to think of something profound to write about but frankly I am tired. As I said before I have been getting up early to get rides and I have been having full days. I took classes – hip hop and the yoga class that challenges every cell in this old body – yesterday and the day before and tonight I mowed the lawn for awhile. Since my husband was hurt a few new things have fallen on my plate.

I get done what can be done. There is no sense in getting all upset about the little things. As long as I manage to accomplish something everyday it is alright.

It is what it is and it is important to keep things in perspective.

Fortunately I have never been the world’s best housekeeper or the world’s best cook. I don’t have those standards to maintain, but I would bet some of you think you do. I like to be a good Mommy to the Beastie Baby and maintain an active work-out schedule. Sorry to say the walkies are down to a half an hour a night and I bowed out of a Zumba class this week. Need to know my limits. Figure out what is important and prioritize. Listen to my body.

After all, we may get our pictures on a calendar, but that does not make us superheroes! I will keep on keeping on….wisely. Continue reading “Calendar Girl”

My Place in the World

Well, I got to my third job and I got home. It was a miracle of timing and cooperation. I was handed off like a baton in a relay race but I got there.

School was the exchange point this morning. A garage in that town was the exchange point on the way home. My boss from my third job was worried about just dropping me off. I was not worried. I was among friends and guaranteed any assistance I would have needed. If my second ride had not shown up they would have gotten me home.

Note to self…and everyone else: make sure you have a safe haven if you try this anywhere else. It was good to be sure the exchange points were somewhere I was known and would be safe.

It was good to see the guys at my old garage. It was also good to see the people at Chinese take-out over the weekend. I miss people it never dawned upon me I would miss. Makes me realize how many of my ‘casual contacts’ were actually very important to me and how AMD has in some ways impoverished me.

That realization makes me all the more determined to keep working and stay in life. I like my job and I am good at it. I can actually be a sensitive soul….albeit somewhat manipulative; I admit. I worked a client around yesterday. From reluctant and oppositional subject to active participant in her own assessment. I knew what I was doing and – if I say do myself – I did it with skill.

Although DBT does not like the word, I do believe there is something to be said for positive manipulation. That is actually what interpersonal effectiveness is even if they don’t like to say so.

I guess the point of that patting myself on the back routine is I still have skills. I can still use them and I still have a place in the world. I can still contribute. Hell, people even miss me when I am gone. There has to be something said for that.

So here be me. 6:45 in the morning and I am waiting for a ride to work. If you knew how much I dislike rolling out in the morning you would understand how out of character this is. But I am doing it. I am doing it because this is my way of maintaining a place in the world. I belong out there. Just ask the guys at the garage. Continue reading “My Place in the World”

Always Learning

The insurance company has decided my husband has been in the rehabilitation center long enough. 8 days, 9? This page could turn into a rant about ‘bean counters’ making medical decisions but that would be a waste of….well, 20 years ago I would have said ink. I believe in fighting the battles I can win. Not too bad at it if I can see an opening. This battle may have to wait. See how things play out.

Glad to have him coming home. A little anxious about the practical ramifications of having a visually impaired lady and a chronic pain gent muddling through together, but I know it has been done before.

My days alone have taught me a few things. In some ways I am more confident. I am able to have food and other items delivered to the door. There is no real concern now about going without. A little planning – both my nemesis and my savior – and I can get by.

I have been effectively using subsidized transit. I know how it works and I can get a fair number of places.

I was again going to try the regional bus system this weekend to go to my third job. Instead we worked out another relay system. Hitch a ride to a location midway, hitch another ride, etc. Sometimes the planning makes me dizzy, but this way I won’t have to stay over at a motel and I save $$$$.

And when I say hitch, I do not mean hitch hike! That is dangerous. Someone tried to pick me up yesterday. I was walking home from the convenience market. Good Samaritan? Maybe. I still declined.

There have been a few things I realized I have to learn. While I have been able to run a power mower since my young teens – preferred yard work to housework even then – I have no idea how to run a riding mower. Need to learn that. I don’t mind walking behind the mower but the gnats have been brutal this summer. I could not even breathe without having a cloud of them go up my nose! Maybe I can outrun them on the riding mower.

The other thing I should find out is if there is such a thing as a pet ambulance. Beastie Baby will soon be 13. That is ancient for a giant breed. While she is doing well, I sometimes wondered how I would ever get her to the vet if needed. Might be wise to inquire of the animal rescue people.

All told, a learning experience but I will be glad to have it over soon.

Continue reading “Always Learning”

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

Today, I Wear Heels

This morning I am taking what has become, in my eyes, a huge risk. I put on summer sandals with a  – gasp – high heel.

I am going to take transit into the office. Early, of course. While they have been very good – fingers crossed, toes crossed – I am always sure to schedule an early ride. While at the office I will put on my dog and pony show for my BVS case manager and his boss. I have a ride home. Short day. We were supposed to be on vacation this week.

I had given up wearing high heels. Scheduling my days I have been aware of the possibility I may have to hoof it. Often I plan a walking section on the great transportation relays that have become my life. Walking a mile or so requires sensible shoes.

I am not really a sensible shoes person. I have piles of boxes of shoes I purchased for one reason and one reason alone. They are cute! Unfortunately cute is not necessarily a synonym for practical or comfortable.

I have thought about wearing sensible shoes and packing fashion footwear in my crate. That would just succeed in adding more stuff to Sue’s Traveling Circus. I really do not want to do that. The amount of stuff I carry now is a bit much. No sense adding to the load.

There might be other options. I might be able to leave shoes at school and/or in the office. Of course that would mean being sure to only wear outfits that match said footwear. More planning. I just cannot seem to get away from it!

More keeping track of stuff, too. I already lost my glare glasses once. What was that? Five days from delivery to crazed hunt through the house. Found them at the office right where I left them.

Not very mindful of me. I should put things down with awareness and intent. Maybe then I would remember where things are. Not doing so well on that. Probably should not add to the memory/ attention overload.

So today I get to wear not-so-sensible shoes. No scheduled hikes so I am taking advantage. Might not happen again for awhile but that is OK. I have already said we should be unmindful of good things coming to an end or not being the norm. Dwelling on how often I don’t get to wear stylish shoes will only rob me of pleasure right now.

Today, I wear heels.

Continue reading “Today, I Wear Heels”

From One Point to Another

I am living it every day. However, I still stand in disbelief of the amount of planning it now takes to live my life.

I almost said a simple, little life. Intellectually I know that many nearly-63-year-old ladies would find my life complicated. Many of them have not pieced together a career from multiple employment sites or taken four different exercise classes a week (not bragging; just fact).

Still, my life seemed simple to me; that is until my eyes went bad.

Today I am getting transit to school. This is my fourth ride. I stand in danger of jinxing myself, their reputation is not good, but so far they have about a “B”, maybe even a “B+”. Let’s see if the universe now sees fit to make a liar out of me.

From school I have a ride to the rehab center. That is with a coworker, a friend of several of my friends. Continuing to spread the burden; you understand. Whether he was to take me home or to the rehab center was totally dependent upon whether or not I could get a ride home from yoga. If I had a ride, I could visit my husband and walk to class. No ride home? No visit. No class.

No spontaneity. No uncertainty. No room for error.

Spontaneity occurs as the result of a sudden impulse. It happens without premeditation. At least that is what the dictionary says. It gives synonyms as easy and open and genuine.

Leon Seltzer, apparently a spontaneity guru, says spontaneity leads to flexibility. The little bit I read suggested Seltzer is a big proponent of “plan B” and being able to “roll with it” when plans are changed.

I am a proponent of those things too, but I never saw them as spontaneity. I always just thought I was adaptable. In my mind spontaneity is an action but adaptation is a reaction, if you follow me. I may be good at making it up as I go along but it is in reaction to my changing circumstances not something I whimsically just decide to do it.

Seltzer also said spontaneity leads to creativity. I can see how that might be. The serendipitous pairing of two things leading to something new may never occur without spontaneity.

But I think I have become creative without having spontaneity. Some of the plans I cobble together to get from point A to point B to point C and back again are damn creative! Necessity truly is the mother of invention.

The one point I really agree with Seltzer on? Spontaneity can lead to happiness. Sometimes it’s nice to stop for a hot fudge sundae just because. Or stop and listen to a street musician because he caught your ear.

I miss my freedom of movement. I miss seeing there is a good sale and just jumping in the car to go check it out. I miss the opportunity to have spontaneity in my life.

But if I did not plan, where would I be? Doing less than I am doing now I suspect. Some concessions must be made. Like it or not. Planning has become a very necessary part of my life. Continue reading “From One Point to Another”

Dancing Angels

My husband remains in the rehabilitation center. I continue to try to adjust to living alone as a visually impaired woman. It is, shall we say,’interesting’.

As you know, I have been trying to find ways of increasing my independence and making things easier on my friends, and on me. With that goal in mind, I am happy to say my Amazon Prime Pantry box came. The box was 20 x 14 x 17 inches. I had loaded it up with a fair amount of stuff. Enough it was marked ‘heavy’. It was a bit of a chore to get it into the house.

I was pleased with how rapidly the order had arrived. It only took two days to get here.

Having the box come was sort of reassuring. I may be stuck but I am not going to starve. I am also not going to stink and I can do my dishes. These are all positives in my book.

This morning I got a ride to a yoga event. The event was right across from a Farmers Market so I bought some fresh, local produce.

I have become more healthy-eating conscious in recent weeks. It is roughly akin to being trapped in an elevator and immediately needing to pee. Feeling I am not able to get to good food made me crave it. Too bad I did not have this epiphany when I could drive and so many meals came from the drive through!

Anyway, still trying to solve the good food versus processed food dilemma. I can work on that later. Now that I know I am not going to starve; that is.

The other problem I solved this morning was making bank deposits. I have had two checks sitting for a week. Getting deposit slips was a major event – I had to prove I was me about a dozen different ways. For generic deposit slips; really??? – but they are finally mailing me the deposit slips. If I write ‘for deposit only’ and sign the checks, I can mail the checks in and get them deposited into my checking account.

The customer service guy wanted me to go high-tech. He wanted me to use an app that would allow me to take photos of the checks with my phone and deposit them that way. If you like that idea, go for it. I declined. Every brain cell I have is busy trying to figure out a transportation schedule. I will take on unfamiliar technology when I have a lull in the action. Whenever that might be.

Oh, I also got to the bank machine this morning. I had money but I was starting to get nervous about running out of cash. I took out $50 more than I normally do. Reassuring to know I have a little extra.

I am starting to think this not being able to drive business is going to turn me into a hoarder. How many cans of tuna is enough? How about rolls of toilet paper? Perhaps we have a philosophical question here.

How many angels can dance on the head of a pin? More importantly in my book: what kind of dancing do angels do?

So that is pretty much it for now. It has been a long day and I am slap happy. To review: I have found a way to get food and other grocery items delivered to the house. I can get money to pay for them into my account….without fighting with new technology. Maybe I can pull this off yet.

Continue reading “Dancing Angels”

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.

Comfort Zone

I realized I have been traveling well within my comfort zone. I go to my jobs, downtown, familiar dog walking trails, places I know well. I do pretty well those places. I can anticipate and I don’t need to use signs or discern among unfamiliar landmarks. I know my surroundings. I can get pretty smug.

Yesterday I needed a ride to see my husband at the hospital (better; thank you) and a friend from a fair distance away offered to take me. Since she and her daughter had made the trip, we decided we would also go to an entertainment event several miles away.

Since they had gone to lunch while I was seeing my husband, we split up so I could eat and they could do an activity. I ate and started to wander in this basically unfamiliar environment.

It was not bad but it was not good either. Although I had grabbed an area map, I was having trouble reading it. My reader had run out of electricity. (Note to self: charge things before you leave the house!) Even if I could have read it all more easily, I was having trouble reading the signs on buildings.

You cannot find your place on a map if you are not sure where you are.

I was not afraid. This is a family friendly place and they are used to dealing with lost children and confused oldsters. I could have easily asked someone for help. I also had my cell phone. I could have called and my friend would have come after me. It was just a little vexing.

Now, you have to understand: being disoriented was not a totally new experience for me. I have never had a great sense of direction. I have been known to pull into a rest stop, pull back out and head in the wrong direction. I am not as bad as a hiker my friend told me about, though. She “stepped off” the Appalachian Trail to pee. They found her body two years later – two miles from the trail!

(I guess that is DBT comparison skill again. I could be worse.)

I have basic ‘woods craft’ skills. If lost, go downhill. Follow water. Figure out where the sun is relative to the time of day and use it to travel in a consistent direction. Great if lost in the Great Smoky Mountains, not so great in the city.

Everything came out fine. I am writing this from my own comfy bed. The experience made me realize, though, what Daddy taught me about basic orienteering is not going to be enough. I need some travel skills.

Continue reading “Comfort Zone”

There Must Be a Pony Here Somewhere

There is a first time for everything. Today was the first time I was let sit.

My usual ride home from work was absent. I asked someone else who lives close if I could bum a ride home. I confirmed it later in the day.

End of the day I closed up shop, packed my crate and sat outside. Beautiful day.

People were leaving school. Are you OK? Do you need a ride? How long do you turn down other offers? What is the grace period to wait for someone who is basically doing you a favor? How late can they be before you catch as catch can and get another ride? Would she have been justified in being angry I had not waited?

Is there an etiquette book for the visually impaired? What are the rules on this sort of thing?

Right before it was time for the administrative offices to close, I called there and they contacted my ride. (Note to self: double-check and make sure you have the cell number of anyone you ride with.) The secretary got back to me. My ride would be right there.

Turns out my ride had forgotten. She had gone 20 minutes home and – to her credit – had turned around and come 20 minutes back to get me. She had been distracted and forgotten.

Part of me wanted to cry. I was frustrated and yes, I was hurt. I felt pretty damn vulnerable and I did not like it!

My ride was apologetic. She was contrite. She basically offered to run me around at whim because she felt so bad. (Might take her up on that! ?)

Sitting here, I am thinking I have two ways of looking at this. I can be hurt and angry and nurse a grudge. Where would that get me? Do I want to burn bridges? Probably not.  I am in no position to alienate people.

The alternative is to re-frame (there is that word again) all of it into a positive experience. Half a dozen people stopped and inquired. They were concerned. Every one of them would have given me a lift and for most of them it would have been way out of their way. That is concern for me and that is positive.

So, feeling vulnerable, but not without resources. I can think of at least three or four others who would have dropped everything and come to rescue me. That is pretty good. There are people who have my back.

I guess I have decided. It was not nice but I survived. People care and will help.

Dealing with horse shit? Sometimes, but with all this horse shit, there must be a pony somewhere! ?

Continue reading “There Must Be a Pony Here Somewhere”

That Voice Inside Your Head

Is it just me or are you low vision folks talking to yourself more? I mean a LOT more! I mean, I have always had the best conversations with myself, but I seem to have turned into a talking-to-myself chatterbox.

I, shall we say, ‘verbally mediate’ many activities these days. “OK, Sue. Do this. Good. Now do this. That looks right.”  And, of course I do it out loud.

I did not talk myself through as near as much when I was fully sighted, or at least I don’t think I did.

Rather than think myself crazy, I decided maybe this is an adaptation. You know, when the environment changes the successful organisms make changes that will allow them to better survive.

Maybe a sign of genius.  Einstein talked to himself. Of course I have also heard he would just wander around Princeton and would have to be led back home. Maybe an urban legend, but, just the same, I don’t think I would like to be that out of it.

Maybe I am just a new learner again. After all, kids verbally mediate – a nice term for talking yourself through a task – all of the time. It helps them to figure out their world.

Going to the Internet for validation of my theories, I discovered I was right!  First of all, I am probably not crazy. Statistically speaking, a large percentage of people talk to themselves. I cannot be crazy if the behavior is ‘normal’; right?

Next point: smart people talk to themselves. Talking to themselves apparently helps to make them smart. According to the literature talking to yourself increases attention span and improves memory. It also allows for better decision-making, apparently through a very personal form of ‘peer review’.

Self-talk is helpful for emotional regulation. I read somewhere that just talking about something can reduce its emotional intensity. Talking takes it through different paths in your brain.

Instructional talk is actually supposed to be the most beneficial of all. It has been found to improve performance. The best way to instruct yourself? Use your own name and refer to yourself in the second person.

So, yes. I am talking to myself more. I am not crazy. I am improving my attention and decision-making. I am verbally mediating old skills that seem to have developed a ‘snag’. Self-talk is helping me to adapt.

That is my story and I am going to keep telling me that. Out loud, of course!

Continue reading “That Voice Inside Your Head”

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: How do I use Zoom for Apple products?

Many of you use Apple products such as an iPad and an iPhone.  They both have some very good accessibility features built-in.  Zoom is one of them. It allows you to magnify what’s on the screen.

Click here for detailed instructions to get you started.

Here’s a video that may help as well.

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

My First 100 Days: Part 4 Now

Here we go, Forward to the Past, number last. 100 days give or take since everything went to hell with my vision. Am I where I want to be? Not by a long shot. Rolling back the clock to a time I had decent sight would be great. But then I would have to go through all the crap again so I think I will pass.

Where am I? Doing OK. Not great. Not awful but OK. I am healthy. I am taking care of myself physically. Important because as grandmother used to say, “if you don’t have your health…” I take my medication. After all, for its size, your eye has a very large number of blood vessels.

Even if they are not really sure if high blood pressure has an effect on AMD, I should take my blood pressure medication just in case.

I also have to stay healthy for the clinical trials. For example, I got bit by a tick the other week. For those of you not living in the Great Northeast, I need to say our ticks carry a nasty little thing called Lyme Disease. It is a chronic, debilitating infection. Chronic, debilitating infection equals no immunosuppressant equals no clinical trial. I was up to the walk-in clinic for prophylactic antibiotics so fast it would have made your head spin. Keep the option of trying for a cure open.

I exercise. Great thing exercise. It is the closest thing I know to a panacea. Good for what ails you mind and body.

Mind? No matter how many of you think I have lost my mind, things aren’t too bad in that department either. Not depressed and no – thank God! – panic attacks. I practice what I preach and try to keep the demons at bay. The future? If I have to go there, I go channeling Pollyanna, humming “My future’s so bright I gotta wear shades.” Better to be mindful of the present though.

Worrying about what might happen can screw up a perfectly good day.

I am working. Not always easy but I am trying to make it work. No one has yet had to “have a talk” with me so I think things are OK. I made people promise we would discuss my professional future honestly if things were not good.

Keeping busy doing something I like and making money. Score!

Friends? Yeah. Good friends being good supports. Husband driving Miss Susie and being a rock about it. Making better friends with people I only knew casually before. It is sort of strange but I think you might associated with a ‘better class’ of people when you have a handicap. The selfish, surly type run the other way. The ‘classy’ ones come to help.

I offer this synopsis not as a measuring stick but as a reason for hope. We all have our own journeys and we take them at our own paces. I am blessed to have been given many gifts and I may have made my journey thus far at a pace that some of you find a little daunting. That is not the point. This is not a race, it is a journey.

The point is: there is light at the end of the tunnel. You can get there. Things can get better.

Continue reading “My First 100 Days: Part 4 Now”

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