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

Do I Rage or Go Gently?

Good morning! Friday morning in State College. Summer Academy Career Day was yesterday and this morning I bus home.

The ride down was delayed. We were in a traffic jam right outside of town for an hour.

The driver was nice. I really did not know what to do about when to load, etc., so I stood right next to him for a few minutes. I felt compelled to explain I am visually impaired and not at all used to buses. I knew not one thing about this stuff. It launched me into a mini, mental pity party for myself.

You know the routine. I was competent and independent and now…not as much. What the hey am I doing riding a bus?!!?

I met a totally blind woman at Summer Academy. When I said I got here by bus, she told me a story of how she cried the only time she ever rode a bus. She was afraid and the people were “nasty.”

We all have our stories. In the end, you pay your money and you take your choice. Participate with all the little indignities or stay home…. Hey, I’m here; aren’t I?

Kids were great as was the staff. Some were wonderfully intelligent and insightful. Somehow I got into a conversation about whether a boy blind from birth would ever choose to see and if I – visually impaired for a couple of years – would want what I have lost restored. My answer was a resounding “yes!” His answer was negative. He sees meaning in his blindness. Deeply religious, he believes he is showing people how one can thrive in adversity by having a relationship with Christ.

Another young man is a running back with a football team. I asked how he, with only light perception, could discern the holes in the other team’s defensive line. He said his teammates yell at him or he just runs into the other line and bounces off. That works too; I guess.

In short, where there is a will, there is a way. The adaptability of the human spirit is amazing.

The kids also did amazing things while they were here, too. They had totally blind kids – no light perception, no nothing – on a climbing wall. They had them on the high ropes and in kayaks. It appears to me they faced fears daily. I cannot imagine being that courageous.

I keep trying to get them to sponsor a camp for us visually impaired “big kids.” As of now, I have not been able to generate a great deal of interest. I would love to be able to go someplace and have all sorts of “adventures” lined up for me.

Last winter I managed to get skiing one time. This summer I have decided to try and add back whitewater rafting. The local college has an outdoor education program and I have signed up for their rafting trip.

I am going to be the only one over about 23 on the trip. I feel weird about it. Preconceived notions and prejudices against age and handicaps are everywhere. Including my own head.

My choices are, once again, simple. To borrow from Dylan Thomas, do I go gently into that good night or do I rage?

What is your choice?

Written August 2nd, 2018

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Suck It Up, Buttercup

I try not to throw pity parties for myself. I really do. Some of the time things might not be great but I get by without a lot of feeling sorry for myself.

However, sometimes other people send out the pity party invitations and I am very tempted to attend.

What am I talking about? I was finished with exercise class and waiting for transportation. Again. A friend asked if I needed a ride. “No. I’m good.” And I waited…and waited…and waited. The instructor finished whatever instructors do after class and started for her car. Why was I still there? Was I sure I had a ride? She looked at me with such concern I wanted to cry.

I finally got home – five miles – an hour after class had ended. I got to eat at 8:30. God, this is a pain!!!!!!!!!

Since it is generally good to work through these things before they grow legs and run away with you, I decided to write a page. Self help, ya know?

I know none of you fine people ever feel sorry for yourselves, but bear with me while I work through this; OK??

I found a Psychology Today article from 2013. Russell Grieger, the author, seems to blend a bit of DBT (alright, so I see DBT in just about everything) with a bit of “suck it up, Buttercup!”   Grieger quotes George Bernard Shaw as saying “People always blame their circumstances for what they are. I don’t believe in circumstances. The people who get on in the world are the people who get up and look for the circumstances they want and if they can’t find them, they make them”.  Grieger divide people into two groups. To shorten what he said, these groups are the whiners and the responsible ones.

I don’t believe there are two groups. I feel there are two approaches and most people flip back and forth. Sometimes you have to utter a few “Really!?!? Are you KIDDING me?!?!”s before you can get back in the game.

Geiger does make some suggestions for not getting stuck in the whiners’ camp. Some of them are rather familiar. Pain is the human condition. What makes you think you are so special?  No, life is not fair. Shit happens and it happens to the nicest people. The corollary to that is “the bad guy does not always die at the end of the movie. Sometimes he gets the girl and rides off into the sunset.”

Then the much nicer ones. You are stronger than you think. You can chose not to let this dictate your life.

Geiger did not add these but I am going to. The reason I ride the #¢≠π~£! van is it is a means to a positive end for me. Without it I could not be out in the community doing my thing. I can suffer a bit if it gets me what I want. The second thought I had was “no mud, no lotus”. I like to think the adversity will make the a better person. Good things can come from adversity if it is faced with the proper attitude.

So there that is. Pep talk done. I guess I can “suck it up, Buttercup!” one more time. Shaw would be pleased.

written December 21, 2017 Continue reading “Suck It Up, Buttercup”

AMD 101 Lecture

I got to go to Walmart today. Not a big thing but not happening as much as it used to. My husband cannot see to drive in the dark and since it is dark by 4:30 now, he cannot take me after I get home from work. Usually it is a lot easier just to give him a list and he can go during the day. Acceptance and adaptation do tend to be watchwords for the visually impaired life. Having my proverbial wings clipped also cuts down on the frivolous purchases!

Speaking of transportation – one of the eternal thorns in my side – I wanted to once again push self-advocacy. With my ride home from school facing a lot of possible medical nonsense, I asked once more about the transportation people actually getting me home from school. Their previous hours were such I would have had to miss an hour of work daily to ride home with them. It now appears things have been amended and they can actually take me home two hours past the old time. Yahoo! Remember nobody ever tells you when these things change.

You have to ask and keep asking. You also have to make sure they know there is a need. Demand can affect supply. Basic fundamentals of economic thanks to Smith and Marshall.

And economics gets me back to Walmart where they are playing the devil out of Christmas music and hawking everything you never really needed. It is the holidays!

We got together with some extended family for Thanksgiving. I usually arrange things so I can talk to my nephews on these occasions. However, this time I got ambushed. Okay, I actually think the ‘kids’ were the real target but I got caught in the crossfire.

This person inquired about my ‘condition’ and then launched right into the “you don’t look/act blind” routine. I know other people get this because there are a couple of dozen posts about it online. Annoying people with their annoying questions.

Not sure exactly how to handle this situation. I don’t have prosthetic eyeballs and even if I did, throwing my eye on the table in a chain restaurant would probably get me thrown out (although in some incidences that ploy has worked for people). Also, as much as this person and I have a ‘history’ and I could have blasted her, my husband would not have approved. That leaves out the caustic zinger. He has to deal with his family more than I do.

Another thing that aggravated me was she was asking the most basic of questions. Everyone else at the table knew the answers. If she had been interested before, she would have known the answers. Although she thinks it has been a year since I started to lose my sight, it has been nearly two and a half years since my first eye ‘went’. I think that is plenty of time.

But barring the bad relationship, how much do I want to subject my nephews to the AMD 101 lecture? They have heard it. They ask sparse but pertinent questions and the conversation moves on. I have tried to integrate AMD into my life. Not the other way around. I have lots of dimensions.  I have other things to talk about.

Just asking. Anyone?

written November 27th, 2017 Continue reading “AMD 101 Lecture”

Make the Safe Call

Hey. I had a real chock full day planned today and what do I do? Nothing. Pretty much nothing. Bummer.

A friend and I went for a Japanese hibachi meal last evening. About three hours later, my system revolted. I will spare you the details, but it really was a waste of what had seemed like a nice meal. After I was finished ridding myself of dinner, I slept poorly. (Wasn’t food poisoning. I KNOW how that acts. Just got a hold of something my system refused to digest).

Now, my plans for the day had me in town, navigating from one activity to another from morning to mid-afternoon. I would have been on my own. My husband was motorcycle riding with a friend.

Had it been two years ago, I would have tried it. I could have taken myself home when I needed to. Cut the day short. Now I don’t have a car. Now contingency plans like that don’t exist for me.

I thought about it. What would happen if I got sick again? Huddled in a corner somewhere until someone had pity on me? Spend 20 minutes praying I did not vomit in their car? Nothing like that seemed like a good option. They were not good options at all.

So I allowed discretion to be the better part of valor. I turned off the he alarm and went back to bed. Spent the day hanging out at home.

I like to think something like this won’t happen again but I know it will. Without the ‘escape hatch’ having your own transportation can afford, many of the marginal calls that I would have said “go for it!” before will now have to be “no”. That really is limiting. It is depressing. I do not like it at all.

So, the game plan? Keep myself as healthy as possible. Be grateful for everything I am able to get to, everything I am able to do. Beyond that I guess it just comes down to acceptance. I cannot cut it as close as I used to. I cannot make the marginal call any more. Sometimes I need to use a little discretion. Make the safe call. Damn.

written October 15th, 2017 Continue reading “Make the Safe Call”

Practice What I Preach

At present I am waiting for the van….again. These pages seem to turn into one big tirade about the truly crap public transportation we have in this rural region.

I got up to get a 6:54 am van to work (having told them I need to be there at 8:30) and I just got the call it would be another 45 minutes until they arrive. Really?!?!? This is on top of being told they could not bring me home Saturday because my seminar is in another zip code, 5 miles away.

I am angry. I am frustrated and I am resentful. Resentment is defined as bitter indignation. It implies unfair treatment.

From the complaints I have heard from the other people who ride the vans, I suspect I am not being discriminated against. Everyone is getting the same lousy treatment. Just the same, it is not fair!!!!!

Yes, I know fairness is an illusion. I know resentment is, as published in Psychology Today way back in 1995, futile and destructive. I am aware my resentment is most likely disproportionate to the damage that has been done.  I am still pissed!

Psychology Today goes on to talk about how resentment is based on internal need rather than external circumstances. If I did not believe I DESERVED better treatment, would I be as resentful? I would say not. I am arrogant enough to believe good things should come to me almost all of the time. Having those ‘shoulds’ in my head sets me up to see things as unfair.

Resentment gives us a target for our frustrations. “This damn transportation company is to blame for my life not being easy! I could do so much more if I only had decent support!” Resentment allows us to forget that while things are caused, sometimes we are not staring at the cause face to face. Things could have been set in motion a long time ago. Your ‘injustice’ may be just another domino ,’victim’ not the agent that set things in motion. Easier to assign blame to what you can see.

So, recognizing that venting my spleen (who said THAT, anyway? Shakespeare?) at the van people may not be productive, I went online and found a couple of articles. PsychCentral.com pushed the empathy angle. Remember “walk a mile in his shoes”? It helps to look at the other party’s viewpoint, their situation. Are they doing the best they can under the circumstances? Psychology Today suggested something’s that sound, well, rather DBT-ish. They suggest you observe your resentment and sit with it for a while. They also suggest relaxation and self-care.

DBT as one-step shopping?

If I actually try to practice what I teach, I would have to admit rehashing all of the nonsense with my transportation situation is not being mindful in the present. The only thing I can deal with is the now. I should also practice some gratitude. Do I have a lot of freedom because the system exists? Yep. May not be exactly the way I want it to work, but it works…sort of.

So, in consideration, perhaps I should be a bit more tolerant. Deep breath…I feel better now. Thanks for listening!

written 9/22/2017

Continue reading “Practice What I Preach”

Take the Bus

Back home from Lion Country! Nittany Lions, that is. We are Penn State! and all that. I rate the overall trip as a success. I made a few contacts and got some ideas.

The more I heard about what the kids were doing the more I thought we need a similar program for adults. How to use an ATM, do laundry, cook, use a long cane, technology…!

Just found an article on ATM use. Will write that up soon.

This morning I got the courtesy shuttle to the bus station. The bus trip was uneventful. Do I like riding the bus? No, but one of these days it may be necessary and I should have the experience.

The woman I was speaking with at the Summer Academy  (Virgil’s Mom! Did I mention I fell in love with Virgil?) said she has had mixed experiences with bus riding. The driver was nice but she was treated shabbily in the station at her destination. She may not even have light perception so her challenges are greater than the average person with AMD, whoever that might be.

Just the same, sometimes people can be royal pains. Make sure you have a few numbers to call in a crisis.

I did not ride with Greyhound but VisionAware did a piece on traveling on Greyhound (and other providers) a bit ago. They provided a number: 1-800-752-4841. This is the hotline for Greyhound. They like you to call 48 hours in advance of your trip.  If you have special needs, they prefer to know in advance. Reasonable, I think. I don’t like last minute complications either.

Remember you also need to be reasonable in your requests. Things like help finding a seat or the bathroom are within the realm of acceptable. If you are not getting even that modicum of consideration, I would expect that number also takes complaints.

Would I take a bus again? Yes, if it were my only option.  I would have to chose carefully to avoid the ‘milk run’ and hitting every village and crossroads along the way. I am just not that patient. This combination of public transportation and ‘Hubby Trailways’ transportation system worked out well.

The times I have been in England we were either driving (God bless us!), in a tour bus or on the trains. However, Britain does have a bus system. In British city transportation systems, stops are announced over the public address system, after which my first reaction was always to turn to a native and say “Excuse me. What did he say?”  Inelegant, but it got the job done.

Britain is not only supposed to be in the process of introducing free bus passes to those over 60 and those with disabilities (most of us on both points I would suspect) but they are also introducing a talking sign system. This is among several, other changes meant to make public transportation more accessible in Britain. See Jonathan Webb’s Bus Travel and the Blind or Visually Impaired for more info.

And FYI for you dog lovers, the Beastie Baby is now two days post when the vet expected her to live. Knock wood, cross fingers, cross toes, cross eyes. She still has not gotten the memo about her impending demise and we are not telling her!

Enjoy your evening!

written July 29th, 2017

Continue reading “Take the Bus”

Some Learning to Do

Good morning. Mildly frustrated….again. Suspecting this is the usual state for people with vision loss in the ‘mature’ years (and whom, exactly do we think we are kidding with that ‘mature’ business??)

The online dictionary gives the definition of frustration as “the state of being upset or annoyed especially because of the inability to change or achievement something”. Yep, that’s me. Upset and annoyed.

I miss my freedom and flexibility of movement. I want to be able to go where I want to go and do what I want to do when I want to do it. And I don’t want everything I do to be such a damn project!

I got back to hip hop this week after three weeks of missed classes. Variety of reasons. But then Tuesday I ended up staying home because I had gotten the feeling I had overstayed my welcome with that ride. (Take the hint, girl!) Wednesday I was going to ride my bike to yoga in the park but I got out of work too late. Tonight I tried a different class, one the Y is offering in place of yoga, and really did not like it. Honestly! Niggling little frustration after niggling little frustration!

Then, of course, I feel guilty. I had arranged for transportation, but two people inquired how I was getting home. Either of them would have volunteered to bring me home. That is not a requirement. They are kind. How can I be so frustrated when I am surrounded by kind people? What is wrong that I cannot appreciate what I have?

Summer plans are starting to formulate. I am one of the most fortunate people I know because I have people willing to take me to yoga events, blues festivals and even into ‘The City’. [New York City, that is.] Am I thinking of that? Of course not! I am thinking about how I am going to finagle transportation! How can I get to the kind souls so they are not driving so much? How can I be less of a burden?

When I start thinking this way I start to get very willful. I dig my heels in and say things to my husband like “Fine! I don’t care! I will walk!” Yeah. 20 miles in the snow uphill…both ways. Problem is: I would actually try!

In DBT the question to ask someone who is being willful is “What is the threat?” What is it you are defending against when you dig your heels in and insist things be your way? Pretty good question because dollars to donuts I am defending against something!

In my case, I think I am defending against the loss of my lifestyle. The loss of my identity. Realistic fear? Certainly not for a couple of confused weeks. Best to let the dust settle. See how things shake out to use one more of my colloquialisms.

Of course, my style tends more towards blunt force than patience. I don’t totally embrace everything I teach. Apparently I also have some learning to do.

Written June 10th, 2017

Continue reading “Some Learning to Do”

How Many Favors?

One of the problems with being a cockeyed optimist and a Pollyanna is I always expect good things and relatively easy sailing. When that doesn’t happen, frankly, I become perturbed. I HATE to be thwarted.

Last evening I started downloading Golden Prey (book by John Sandford) from BARD. It has stopped several times since then.

I think it has to do with too much in my iPad memory. My ability to clutter up my environment extends to technology and cyberspace!

Another case of “do as I say, not as I do”. Deleting books you have already listened to is fine. You can always get them again. FYI for you non-technical savvy folks, your devices will run faster if you do.

My schedule is changing for the summer and I have to figure that out. Transportation will only pick up until 7 pm. After that my coach turns into a pumpkin! (Of course, for some of the ‘lemons’ I have ridden in, that would be an improvement!)

I have been picking up signs a woman who has dutifully transported me up for the last 15 months has gotten tired of it and needs a break. Changing my schedule so that I can ride my bike at least some of the time and take up some of the rest of the slack with transportation should work. I also have a co-worker who has started to take some of the same classes and who has offered to haul me. Also another gym friend.

People truly are wonderful and generous but they are not saints. Problem becomes they hate to let you down and will keep on helping even when it is no longer convenient.

I am starting to think I need some sort of rotation system. I already try to limit how many times I impose in one week. I try to keep it under three rides – counting someplace and back as two – a week for any one person. Except my husband, of course. He drew the short straw when he married me!?

Once again there needs to be some sort of etiquette book for this! Any ideas about the ride dilemma? How many favors for the old, visually impaired chick is too many?

Still haven’t got the new pool liner. Got that call at 7 am as the rain poured down.

And my frustration that you may actually care about….Aipoly, or at least the free version I downloaded, did not live up to its hype! My diet Pepsi bottle was “a wine bottle” (however, that is a thought!) and my glare glasses were “one string of headphones”. I got too close to my sandal when I took the photo so that was “a basket” although when I pulled back and tried again, Aipoly got it right.

Now, in all fairness, I am cheap. The word free can be music to my ears. There is an Aipoly version for slightly less than $5 per month. That one is supposed to be much ‘smarter’. Since I am cheap and not in need of such a service yet, and since I can never remember to cancel those damn ‘free’ trials, I’m not downloading it. If you are in need of such a service and can remember to cancel a free trial, try it and get back to us please.

Type at ya later! Continue reading “How Many Favors?”

The Stuff of Life

Good morning. Fair warning; I might just ramble on this page. A bunch of little things happening. Nothing major.

Of course, little irritations are the stuff of life. I am also thinking they are more the stuff of low vision life.

I am waiting for transportation but I have no idea when they are coming. I got a call but the recording never clicked on. That meant anywhere from one minute to a half an hour. Better than yesterday. Yesterday they never bothered to put me on the schedule!

Fortunately my husband was able to take me. I seem to have a large number of ‘saviors’. Did I tell you a total stranger gave me a ride home from yoga? I was sort of stuck. The stranger told me she has been taking class behind me for six months. Couldn’t prove it by me.

That is a bit embarrassing. The next class also gave me a problem. I really wanted to talk to her but I could not see if she were there or not. What was I supposed to do? Walk down the back row staring at people? That would have been a bit weird.

I finally decided she had been told (and had observed!) that I am visually impaired. If she wanted to talk to me, she needed to speak to me first.

Why doesn’t someone write an etiquette book for these things? Miss Manners for the Proper Low Vision Sufferer!?!? There have to be some sort of rules! I get frustrated having to reinvent the wheel all of the time.

I got my CCTV back from the repair shop. I held on to the loaner a few days just to be sure all was well with mine. Also because returning the loaner was a semi-major event. Pack it up with all sorts of cushioning. That, of course, made it all a little too much for the box so one of us had to hold it closed while the other one taped. Then I discovered they had neglected to include free shipping labels so I needed to call for them. No to mention getting the bulky box out the door and to UPS!

(UPS will pick up. You can schedule a pick up by calling 800-pick ups which is 800-742-5877. However, their website does mention a ‘residential surcharge’. How much, no clue. We are the strong back and weak mind type and just always take things to the store.)

It would be nice if there were local repair options but I don’t believe there are. FYI, though, when I was not sure the company was going to be able to supply me with a loaner, I called Blindness and Visual Services. As a former client I could have borrowed one from them, quality not guaranteed. Pack that one away in your memory for a rainy day with a ‘sick’ CCTV.

Last thing for this post, I have my first visually impaired counseling client! I won’t say much about that person because of confidentiality. Instead, just a quick comment about my (of course!?) thoughts on it. To wit: it is happening slowly but it is happening. Remember that stuff about God closing a door and opening a window? The stuff about not forcing your fate???? How about “build it and they will come”? There you go! We are building and they are coming. Cool. Continue reading “The Stuff of Life”

They Get My Goat

Every once in awhile things just GET me. They get my goat – wherever the devil THAT saying came from! They get my goat ‘real bad’. [Lin/Linda: the origin of “get my goat” is at the end of this page.]

It apparently wasn’t enough my left scotoma got denser. I have been handling that – sort of. When I am waiting for a ride to class or walking the dog I have been checking it out and it is pretty opaque now.

I think that action is the visual equivalent of poking at a sore tooth – another old chestnut – and probably not good.

However I think I have discovered something doing it. If I want to see if, for example, a flowering bush disappears, and I want to look at said bush, I focus on a point nearby. I have to consciously put my poor, beat-up fovea on the bush to make it disappear. To me that means eccentric viewing has become a habit. There is at least one positive!

The second thing that has been happening is the weather. It has been raining for days. I am not only tired of the rain, I am just plain tired. There are biological reasons for it. Darkness leads to the production of melatonin and melatonin makes you sleepy. The problem really comes, though, when I am trying to drag myself through that melatonin fog and actually function.

School was Sleepwalker Central yesterday. Yawn.

Wondering if reduced light hitting the retina – or more precisely less retina to detect that light – would lead to being more sleepy. Can I expect to have less energy in the future? No one ever seems to have answers for my questions!

The other issue is people are driving me crazy! While there are people I am dealing with to whom I want to scream “Think! Can you do that? Think!” I am particular peeved with – one more time – the transportation company! Last week I was picked up at 4:55 for a 6:15 class.

This morning I was picked up at 7:05 to be to work at 8:30. Really!?!?!?! What do they think I am going to do when I am 1.5 hours early? Twiddle my thumbs?

I guess what insults me more than anything is the implication (I perceive) my time is not important. “Oh, she is just a visually impaired old lady. She doesn’t have anything better to do.” ‘They’ would say not.’They’ would say it has to work that way because it is a shared ride. I would not believe ‘they’.

Of course, my mind spins out to decades wasted riding the van or getting places obscenely early. I do the math. It would only take 16 days of 1.5 hours wasted to have squandered a day of my life! How dare they?

Problem is, this is my new reality. I bum rides from just about everyone I know but sometimes I get stuck riding transportation. It is what it is.

Tonight I got to the Y slightly more than a half an hour early. I walked to the cash machine and got some much needed cash. One job done. Maybe it is up to me to make sure my time is not being wasted.


About the phrase “get my goat”, dictionary.com says “This expression comes from a tradition in horse racing. Thought to have a calming effect on high-strung thoroughbreds, a goat was placed in the horse’s stall on the night before the race. Unscrupulous opponents would then steal the goat in an effort to upset the horse and cause it to lose the race.”

written May 10th, 2017

Continue reading “They Get My Goat”

Special Favors

This evening I am staying home. It is normally a Zumba night. Did I want to go? Absolutely! Still I turned down a ride. Why? Because she would have had to make a special trip to get me.

I am really struggling with this. Every fiber of my being wanted to go to class. My ride volunteered, but she was already at the gym and would have had to leave, pick me up and go back there. So I turned her down.

Some people don’t have a problem with asking for and taking special favors. My ride home from school is a club advisor. Tonight we took a student home. Five miles in the wrong direction. Wasn’t the first time. My friend felt used. I don’t want people to feel used.

So where is the line between a doable favor and a burden? Where is the line over which people feel used? I looked online and found page after page of sites telling you how not to be used. How about a site that tells you what is an acceptable request and what is going over the line? How about a site that tells you how not to be a user?

With rides I try very hard to make sure they are going my way to begin with. My usual rides home from school both live within a mile of our house. To me that is not excessive. Is it?

I try not to lean on any, one person too much. My maximum burden for anyone is three trips a week. Most of those three times include a there and back combination. Is that too much?

Where is the etiquette book on this????? Etiquette says to do as much as you can to ease the burden. I try. I am always ready on time. I wait at the bottom of the driveway. It says to consider your task and the person you are asking. How is that match? Usually good because they are going to the same place.

I am thinking I need something a whole lot firmer than what I have. People are fantastic and I want them to keep being fantastic. Yes, there is self-interest here, but I also want them to not be inconvenienced either. Neither of those things will happen if I over use people or take advantage of their generosity.

‘Tis a dilemma, so I am throwing it out for discussion. What is too big of a favor? When should you not ask? When should you refuse an offer? What are the rules on this???????? Continue reading “Special Favors”

How Am I Supposed to Get Home?

Vulnerability. I guess this is a feeling many of the elderly and disabled have, but I do not like it!

What brought this up? Yesterday. Yesterday stunk! There was a series of unfortunate events that once again drove home the point I am not the queen of my world. Maybe not even a princess.

School had a two-hour delay. Bad roads. I had been told the transportation company would make accommodations for bad conditions. Apparently not the case. They wanted me to go in early as usual. No clue what I was supposed to do if I got there and they decided to close for the day. How was I supposed to get home?

My husband took me but he has been sick. It has been aggregating another medical condition he has. He says I worry about him because he is my back-up ride. Well, there is a grain of truth in that. Also not sure how I am going to manage my life and his needs if he is down and I am blind. Best not to worry about now. Put it away if you are not able to deal with it in the here and now. DBT distress tolerance skill.

Then my ride home, who has been totally reliable for the past ten months, forgets and leaves me! She came back for me, basically wasting an hour of her day, but I had limited options and she felt awful. Just the same, there was a certain sinking feeling associated with the whole thing. I really felt lost. The world can quickly go to Hades and there is not much you can do about it. Vulnerability.

So what exactly can be done? I found all sorts of stuff about dealing with emotional vulnerability a la DBT but very little about reducing actual vulnerability. I am talking about the real deal here. I want to be less vulnerable!

What I found was actually on a disaster website…and yes, there are times I think AMD qualifies. 7 Ways to Reduce Vulnerability and Prepare for Disaster suggested knowledge. Know your risks and know your options. Once again, have plans B,C and all those other letters.

That leads to their second suggestion which is having a social network. There is strength – and flexibility – in numbers. Have a number of people you can depend upon. Whom can you call for rescue?

Remember when you have run through your personal resources, there are always community resources. Whom can you trust to save you? Under what circumstances? Police and fire departments have responded to plenty of calls from people with lesser needs than, for instance, being stuck ten miles from home and having no way to get there. Know the non-emergency number of your local community services and, when all else fails, call. You might not get a ride in a police car, but they should know which church or social agency would be willing to come to your aid.

That taps into another suggestion: be adaptable, and creative. If the usual solutions don’t work, try the unusual.

I cannot really see how I can bend two of their suggestions – impact avoidance and mobility (mobility problems being a huge part of this mess!) – into being useful to my dilemma, but I might be able to use the last one, subsistence. The article suggests having go bags for natural disasters. Might be an idea for my situation, too. I try to make sure I am not stuck without my phone. I carry cash and at least one credit card. Packing a lunch and a change of underwear might be a little extreme but not unheard of. The basic idea is to have resources.

Not saying doing these things will eliminate vulnerability but they might limit it some. At least I feel a little better about it. How about you?

Continue reading “How Am I Supposed to Get Home?”

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”

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”

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”

Best Laid Plans

I was supposed to be going on my first ‘big’ adventure today. I was supposed to take the bus to a resort town and meet my friends. Not happening. My husband has had some health complications. Probably should stay close to home. Also, no ride to the bus station at the crack of dawn.

Oh, I finally should be able to add another option to my transportation choices. I called the public transportation people AGAIN. This time I was told I would have my approval by Tuesday. Let us see what happens.

I think I told you before it is a wise idea to get these things in place before you need them. I tried. I filled out my application in early March. It is now June and still no subsidized transportation. Scary to think how it could have been if I really needed it three months ago.

Cautionary note: put things in place even if they are not needed now. You never know when they will be. Plan ahead seems to be a must when you are visually impaired.

Anyway, no trip today. I am disappointed. How to handle that? I called my Saturday morning Zumba class ride to un-cancel so I will go to class. A friend who knows my dilemma said she and her husband might be able to get me in a kayak on the river tomorrow. My favorite distress tolerance skill at work, distraction through activity. If you keep moving, the illegitimi can’t get you.

Black and white thinking says things like always and never. “I am handicapped now, so people should always satisfy my needs.” “I will never get to have any fun now that I have macular degeneration.”

Those black and white thoughts come up when there is disappointment. Best to recognize them and lose them.

When you are disappointed and thinking in absolutes, shoulds and musts, it is easy to lose perspective about other people’s situations. This is not a perfect world. Things happen. Getting angry and accusatory won’t help. No one in the world can satisfy all the needs and desires of someone else. Disappointment is inevitable.

Have I been disappointed before? I suspect I have been. Remembering I have been disappointed and lived to tell the tale can be helpful.

There was life after that disappointment and there will be life after this one. I am pretty strong and I suspect you can be too.

So here I am home when I had hoped to be on an adventure. Cannot be helped. Might as well accept it. Disappointment is part of life and I suspect the frequency rate picks up when you have a visual handicap. I have lived through disappointments before. I believe I can handle a few more.

Continue reading “Best Laid Plans”

Plans B through G

When my nephews were young we would go on adventures. There were times our adventures did not go as planned. I would give them a bit of life philosophy: the art of life is often in plan B.

I am starting to understand this visually impaired nonsense is an ‘adventure’ and I need a plan B. I probably need several plan B’s ……probably a few plan C’s. Maybe even a D or two. And these plans should be for each and every situation in which I am depending on others for support.

I have been really fortunate to get a wide amount of coverage for my needs. I have one person to take me home from work, one for Monday evening exercise class, one for my Thursday activity, etc. The problem – and it is not really a problem, it is reality – is that every one of these people has a life.

They have offered to help me, not be my slaves. When you are dependent upon others, their sick kids become your problems.

So now that I have width, I am going for depth. Monday night ride’s kid has a sporting event so I called my backup ride. My ride home from work has a dentist appointment? I need to go to my backup person. People volunteer – foolish people – and I take their names and numbers with the explanation I have a regular ride but I would like to keep them in reserve. May I call you when I am stuck? People are generally fine with that.

People giving me rides are generally not going too far out of their ways. It might be a mile or two at most for them to swing around and pick me up. I try to not ask people who live too far and go for another option if I realize they live all the way across town.

I hate to ask people because I always feel as if I am putting someone out. Being an inconvenience is not a good thing. However, multiple people have assured me most of that thought is in my head, not their heads. They would not volunteer if it were a problem.

Would I do the same if the shoe were on the other foot? Maybe not, but I like to think so.

Basic courtesy is a must. I try to never have people need to wait for me. If that means stopping what needs to be done and twiddling my thumbs for five minutes, so be it. I don’t make messes in their cars or ask for extra stops. I gave out $3 chocolate bunnies at Easter. Thank you.

I also have been trying to be more – gasp – flexible. If my ride home from work has a late meeting, I plan to stay, too. If what she needs to do and I need to do conflict, I either try a backup ride or I change my plans. She is already accommodating me. She does not need to do it any more.

I am anticipating the day that none of my rides can take me. I would like to think I will be able to put on my big girl panties and cope. Probably will pout. I know me. I pout. Whine a bit. But then I need to do something more positive and productive. That might be plan G.

Continue reading “Plans B through G”

Resources

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.

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated.  I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey.  Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.


AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.


Navigating

There are a lot of links here.  I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.


Topics-click below to move to a topic

Links We Like

  • Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
  • Click here for a great glossary
  • Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
  • Videos
    • Click here for several videos
    • Click here for the UK Macular Society’s Say Hello to Mac
    • Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
  • Click here for a short introduction to stems cells, what they are and how they can be used.

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.


Glossary

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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Support

I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one  you’d like to add.

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

  • Association for Macular Diseases
    210 E. 64th Street
    New York, NY 10021
    (212) 605-3719
    – Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
  • Macular Degeneration International
    is now a part of Foundation Fighting Blindness
    Toll Free Helpline 1-800-683-5555
    EMail: MDInfo@blindness.org
    – Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
  • Vision Support Group-download video presentations  This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases.  You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport

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Where to find services

  • In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
  • In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
  • In the US: click here to search for a wide variety of services (more than the link above)
  • In Australia: click here to find an ophthalmologist and optometrist
  • Worldwide: click here for resources worldwide

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

Formats: Braille, large print, e-book and audiobooks

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Videos

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Personal stories of living with AMD

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Online newsletters

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What is AMD?

Wet Form
Dry Form
How fast does AMD progress?
  • A good article about how difficult this is to answer
  • Great video that explains why early detection is important especially when detecting the change from dry AMD to wet

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What is Stargardt’s Disease?

Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

  • problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
  • eye problems that have similar symptoms as AMD:

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Risk factors

Age

  • Age is a large factor but can start earlier
  • Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others.  See Stargard’s Disease section above.

Diet/nutrition (working on this section)

  • diet low in various nutrients & high in others have been linked to AMD.
  • See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.

Race

Gender

  • AMD more common in women perhaps because women live longer than men

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

  • Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.

Connection between AMD and Alzheimer’s Disease

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Treatments

  • FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)

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Research/Clinical trials

 

How can I become a part of a clinical trial?

  • A list of sources of information about clinical trials and how to find out for you to participate in.
  • You can search for clinical trials from the links above
  • There are registries where you sign up and enter information about the status of your eyes.  Researchers will use this information to find people that match their research and contact you.  Click here for more information about these registries in the US and elsewhere

Gene Therapy

Bionic Eye/Retinal Implants

  • What is a bionic eye?  It’s also called retinal implant or retinal prosthesis.   Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
  • Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
  • March 21, 2016 UK Bionic eye being tested
  • Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

  • A website for the US where you enter your zip code and transportation options for your area will be shown.

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 


More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 


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