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

Tag: travel

Sue’s Great Adventure – D Day aka Departure Day

If you haven’t read Sue’s first page about packing, click here.

6:15 am Thursday

D Day! That is Departure Day for my Great Adventure to Colorado. Yowza. So far that is without an exclamation point. I am a little anxious and still in disbelief that I am actually going.

I am leaving all sorts of work undone. I worked right up until 4:00 pm yesterday seeing clients. I will have that paperwork and the results of my husband and the dogs living “the good life” without me to contend with when I get home. It is nice to have a purpose; I guess.

Hurricane Ida rolled over us all day yesterday. Monsoon season in Pennsylvania. The garage and the basement took on water. There are a couple of low spots on our usual route out of here, so the first leg of the journey – getting out of town – may require some creative navigation. Oh well, who would expect things to go totally without a hitch?

6:36 am? I guess it is time to get out of bed and wander down the hall. Following my mother’s advice: every great journey begins with a trip to the bathroom!

7:47 am. T minus four hours.

I signed up for text messages last evening. Glad I did because I just got a text from the airline. Leaving on time from gate 5. Okay. Guess I can find gate 5.

I have been wandering around the house trying to figure out what I need that I forgot. I have to keep reminding myself Denver is no longer the frontier. They have Walmarts!

I also just took photos of my paperwork. Never mind I have made about four copies of it already! Don’t know what I did before I had a home printer. Anyway, that photogenic paperwork included my “vaccination passport.” I already had a paper copy of that in my wallet, but what the hey.

9:55 am T minus 1 hour and 52 minutes

Here I am. Gate 5! So far things have gone pretty well. My only screw up was packing a new tube of toothpaste. I hope the cleaning people like Colgate.

Anyway, people have been very nice. Truth of the matter is, playing the legally blind card seems to work wonders. I have been depending upon HUMINT totally so far. Of course, it is early yet, but I haven’t had to break out any of my old, blind lady paraphernalia. [Linda here: I had to look up HUMINT. It’s Human Intelligence!]

I do need to get a drink so I can take my motion sickness pills in about an hour. Reconnaissance mission to the closest food court coming up!

10:30 am T minus 1 hour and 27 minutes

Successful mission! This is a small, local airport so basically all I did was wander down the corridor a little bit. I am back at Gate 5, diet soda in tow.

While I was wandering around, I got my notice about my meet and assist service in Charlotte. Cool. There should be someone waiting for me there. The notice suggests I also get meet and assist support in Denver and Charlotte on the way home. See how that works.

That is it for now. I will pick up on another page when I get on the plane. So far, so good!

nexT: LANDED!

Sue’s Great Adventure: Packing

It is less than 72 hours to launch. Today is Monday. Thursday I start on Sue’s Great Adventure. Oh, boy. Can you say ambiguous? Also, after a year and a half of COVID existence, it does not seem possible I will be getting out of town. Alone.

God helps fools and children. I meet one of those criteria.

God helps those who help themselves. Working on that one, which brings me to the topic of this page; how am I supposed to pack as a visually impaired person? Excellent question. My answer: I have no idea, really.

The problem with being visually impaired – or at least one of the problems – is stuff. I have a lot of stuff. So far I have thrown several vision aides into my bag. I have a handheld electronic magnifier and my Max TV glasses. I have a small monocular to wear around my neck.

I also have my iPhone, the Swiss Army knife of modern existence. On my phone, I have Google Maps. Google Maps can give me walking as well as driving directions. If I put where I started from in and program it for a return trip, Google Maps will return me to my starting place. Good for those of us with questionable senses of direction, not to mention an inability to read street signs or paper maps.

I also have Be My Eyes on there. If I call up Be My Eyes, a volunteer will answer to read things, identify things, just generally to be my eyes.

Not only is my iPhone camera a camera, it is also a QR code reader. We will be touring at least one national park. The United States Park Service is moving towards accessibility through labeling all sorts of interesting things with QR codes. With my phone and its QR code reader, I will be able to read all about it without having to put my nose on the sign.

Then there is my iPad, of course. I seem to have lost my second pair of AirPods, so I think I will take a pair of headphones to listen to books and TV in the airport and on the plane. Sometimes I wonder how I lived without my iPad.

A trick I always used is marking my luggage with something distinctive. I have used colored duct tape or a big, bright bow. I try to make it easier to find MY hunter green, canvas bag as opposed to the other 36, hunter green, canvas bags on the luggage carousel.

I will be meeting my friends in baggage claim in Denver. If I cannot make it easy for me to see them, I guess I will have to make me easy to be seen. Maybe my tie-dyed hoodie or a bright orange sweater?

Those are some of my ideas about packing as a novice, solo traveler. Maybe I am on the money, maybe not. Dunno. I guess I will find out as I go.

written August 31st.

Next: D SUE’S GREAT ADVENTURE – D DAY AKA DEPARTURE DAY

Rocking and Rolling

Allow me to begin with a disclosure: I can get seasick in a bathtub.  Water is supposed to be my element (Cancer the crab) and I love it but when it moves me around too much, my entire system protests. Ergo, if I have to leave abruptly, you will know why.

Yes, I am cruising and yes, there is a Nor’easter raging out there. We sat in port in the Hudson River an extra 13 hours before venturing out into this mess. The captain decided discretion was called for and waited.

Sitting in the harbor, I really noticed my vision loss. I missed things. Big things. My husband had to point out the Statue of Liberty and the Staten Island Ferry.  How could I miss the Staten Island Ferry? It’s ORANGE, for crying out loud.

They just blended in. Sat in my blind spot. What can I say? It is what it is.

Using the camera helped. Either using an iPad or a camera with a screen allowed me to “see” what I was looking at.  I don’t always like to use technology to “see” my world. It reminds me of my mother-in-law who says she never needs to travel because she has seen everything in the movies or someone who says he has experienced something because he has seen it on TV.  I feel those are pale reflections of our world. However, if I want to experience it, I have to do what needs to be done. At least this way, I can experience the sights, sounds, smells and…uh, movements involved in actually being there.

Staff has been great.  When I have had a question about where something is, they have been very accommodating. If I say “No. I cannot see the sign. I am visually impaired,” they have walked me there.  I had three pool area staff bent over my phone helping me try to load the ship’s app.  We failed, but they were very sweet to devote a half an hour out of their days to my problem.

I have seen a woman with a white cane being guided to guest services by a staff member. I have seen another woman with a guide dog.  It appears Royal Caribbean does provide some things for the visually impaired.

Today, before the weather went really bad, I did the bumper cars.  It was the first time I have driven anything on my own for three-and-a-half years. It was rather nice to be behind the wheel again.  And the even  nicer thing was I was SUPPOSED to run into things!  Please note this was with “British” bumper cars.  The driver sat on the right. Go figure.

We booked this trip about a month ago. There were two rooms left.  One was the grand suite and the other one was one of the less desirable rooms. Sort of a luxury version of steerage.  You can guess which one we took.

While we are in about the most inaccessible part of the ship, I have had few problems finding my room.  My husband has had the same problems. There are a lot of twists and turns to get there.

The room is extremely small  but at least that means I can stand in front of the TV and pretty much reach every thing without even moving my feet.  Today that was great because everyone is still developing his sea legs. Stumbling is not a good way to determine if someone is drunk or sober today!

I was supposed to do the “indoor skydiving” and go to a musical production today but the bad weather has pretty much everything being cancelled. Even the harbor of Boston has been closed until noon tomorrow.  That means a reorganization of my shore excursions.  Oh, well.  If nothing else vision loss has taught me there is always another way to do things.

Planning and flexibility. Essential in the world of a VIP. Now I need to see if I can walk a relatively straight line to get back to the room.  It is rocking and rolling around here!

Written October 11, 2019

Next: GOOD PEOPLE DO HAVE VISION LOSS

Traveling Blind Again

As I write this I am waiting to board a plane in Shannon, Ireland airport. The adventure is almost over again.

Yes, you might say I have been “traveling blind” one more time. This time we circumnavigated the beautiful island of Ireland.

Some people may feel I am brave. Some people may feel I am insane. I just feel I have a lot of life left and I would like to enjoy it as long as I can.

My husband did all of the driving. I was not much help. There was no way I was able to read signs. We made do. I had printed directions from the Internet before we left. I had the GPS turned on. My husband prefers paper maps. I cannot read paper maps quickly or without magnification. He made do.

Could I see the attractions? Pretty much. The Cliffs of Moher and the Giant’s Causeway. were more or less hard to miss. They make use of the concept of size magnification. When something takes up your entire field of vision, it definitely extends beyond your scotoma. Same for the beautiful, green fields we would pass. I actually saw plenty of those, too.

The problems I had were with the smaller things. The Book of Kells was not as exciting as I expected. I could not see the detail. However, I did enjoy the gift shop so all was not lost.

And if you are a bibliophile such as I am, the Old Library at Trinity was amazing. It really did not matter I am no longer able to easily read what the books contain. It was a pilgrimage and that was a truly holy place.

Believe it or not, I was not following my husband and hanging on for dear life much at all. He is not much for exploring on foot – bad back – but I am. I went on “walk about” most of the places we visited. I was on my own in the Killarney National Park, the part that looks like a city park, that is. I walked along the wall, turned left and walked two bridges along the creek. I took off in Galway, trusty tourist map in hand. Hug the shore. Follow the canal. Stop and ask for directions often. This may not have been the off the beaten track sort of exploring I would have liked to have done but it was not too shabby.

I can honestly say I did not meet a nasty or unhelpful Irishman during our entire trip. I had one woman volunteer to zip my new jacket. Thanks again, Mom! People would identify my coins for me and take what they needed for payment. Although I could be wrong, I would lay odds none of those people took a penny more than he should have. And if I asked for help once, I asked for help half a dozen times a day. People would point out the toilets or read a menu to me “no bother”.  All I had to do was ask.

So Ireland was a success. Will I be as successful next vacation? No way to know that. But for me, for now, traveling blind worked out quite well.

Written April 11th, 2019

Next: Like Sorting at Hogwarts

Can I travel by air with macular degeneration?

QUESTION: Can I travel by air with macular degeneration?

ANSWER: There ARE some eye conditions where air flight isn’t recommended. Here’s a great article with a lot of them: ‘Can I Fly With This Eye?’ 

Macular degeneration is not included, but if you have ANY questions, don’t hesitate to ask your eye doctor. If you are being treated for wet AMD/CNV, ask your retinal specialist if you should wait a few days after a treatment before a flight.

GO BACK TO FREQUENTLY ASKED QUESTIONS

 

Cruisin’

Saturday. I think I am packed except for toiletries. I guess I’m good. Find out once we get on the ship.

I have not done as much research for this trip as I have done for other trips. We planned it fairly quickly. Wanted to get it in before we got a puppy.

I will let you know how it all goes. I just looked up Best Ships for Cruisers with Disabilities. They reviewed the big ones: Royal Caribbean, Celebrity, Disney, Holland America and Princess.

While most cruise lines are pretty good with physical impairments, visual impairment only got about one line of text in each case. Each of them offers Braille on some signs and audio books in the library. Most offer large print menus in the restaurant. In other words, in my not-so-humble opinion, they don’t put themselves out too much. (After all, do they even make elevators without Braille anymore?)

If you have a guide dog, he can also cruise. However, be careful which cruise line you choose. According to Do Cruise Ships Cater to Blindness?, Royal Caribbean will not let your dog off the ship! He has to stay aboard at all ports of call. Holland America has the same rule. Several others allow service animal to disembark as long as they have all their proper papers. Of course, finding out what exactly the proper documentation is your responsibility.

Princess has computers set up with JAWS and Holland America has a similar set-up called Window Eyes. That means you can search the web in their internet cafes and the computers will read it all to you.

Royal Caribbean provided sign language interpretation for the deaf. They also provide orientation tours for the visually impaired. However it appears none of them will provide anything in the way of orientation and mobility for the visually Impaired much beyond that initial guided walk around the ship.

In fact, the “Cater” article outright says some cruise lines strongly suggest, depending upon your level of impairment, you not cruise without a caregiver or, at minimum, a sighted companion. Although I would not want to cruise solo, that can put a definite crimp in some people’s style!

That said, there are ways to travel with disabilities, including visual impairment and blindness, and even if you don’t have a ready travel companion. Organizations like Access-Able and Mind’s Eye Travel come up in searches. While I have never used services from either agency, the owner of Mind’s Eye and at least one of her sighted guides were a year behind me in high school. I can vouch for the women so I am pretty sure I can also vouch for their program and services.

So, no, it may not be as easy as picking up your wallet and passport and going out the door, headed for parts unknown. (Although when I looked up ‘blind travel’ I discovered there are companies that will plan everything right down to choosing your destination. They don’t tell you where you are going until you get there!) However it is possible to travel when you are visually impaired. First leg of my trip is in about six hours.

Written October 29th, 2017

Continue reading “Cruisin’”

Eating Our Way Around the Globe

Hi. I have walked the dog, dusted the house, done the laundry and watered the plants. Plus a few other things like washing dishes. Twice. I even had a good lunch. OK, it was fish sticks but I had a piece of sweet potato and peas, too. Better than yesterday. That was popcorn. I think I deserve a break.

Lin is going to shoot me. Pretty much all I have done this weekend is write?. More for her to edit! [Lin/Linda here: it’s a good thing I love you, dear.  ::smile::]

But housework bores me! I got thinking about Summer. Thinking about vacation. We will probably put off our ‘big’ vacation until Fall, but we could still do a few small things this Summer. Where do the in-the-know low vision people go?

‘Big Jim’, whomever that might be, put together a nice list of options. First one on the list in 20 Best Summer Vacations for Blind People was skiing! That was a bit of a surprise. Especially since he was supposed to be talking about SUMMER vacation. He also suggested mountain biking on tandem bikes and zip lines. Big Jim sounds like an action adventure guy.

For those who are seeking a more sedate pastime he suggested things like music and food festivals. Also wine tasting and day spas. I could probably handle those, too.

Big Jim also suggested theme parks. If you ‘own’ a child or have the capability of ‘renting’ one, Legoland was a recommendation. [Lin/Linda: I thought it interesting that it says “However, to keep out the nerds the park requires all adults to be accompanying a child.” Sue, you being a child at heart won’t work here! ::smile::] When I looked it up I discovered there are 17 Legolands including ones in Tokyo and Istanbul. The websites have accessibility information for the physically handicapped but not for visual impairment. Looks like a lot of cool rides and activities, though!

Disney World was on the list. Leave it to Disney to have actually done some special things for guests with low vision. If you go to their guest services page, you will see Disney offers at least three accommodations. These are audio description devices, Braille guidebooks and stationary, Braille maps.

Service dogs in harness or on a leash are welcome. Hey, Fido, where are you going after guide dog school? I’m going to Disney!

There are 12, specialized guest services locations scattered around the park. These are especially for us low vision people! I have no clue what other specialized services they may offer but it is nice to be considered.

Check out the list Big Jim compiled. Our big trip in the fall will probably be a cruise. Cruises are on the list. However a friend has already promised to take me to another local, blues festival and I keep eyeing the New York International Food Festival. I could get there by bus. Who wants to meet me? We can eat our way around the globe! Continue reading “Eating Our Way Around the Globe”

Travelogue: Iceland!

Greetings! We are back from our vacation to Iceland. Glad we did it. Glad to be home. My husband wanted to drive the ring road around the island and we did approximately 1200 miles in our ten days there. More than enough traveling for me.

I have an acquaintance who went to Iceland over the summer. She stayed in Reykjavik and did day trips to things in the Golden Circle. My acquaintance described Iceland as an Utopia. Hmmmmm, no and yes.

On the no side, I did not get the memo telling me winter starts in September in Iceland. It poured, I repeat, POURED, down rain sometime of every day we were there. That time was usually the same time I was getting out of the car to view an attraction. Since it was between 40 and 50 degrees Fahrenheit the whole time we were there, I spent most of my time wet and cold.

The second memo I missed had to do with the cost of things. I bought a piece of cake that turned out to cost $7. Gas was something like 191 krona a liter. There are 115 krona to a dollar and 3.8 liters to a gallon. Therefore gas was something like $6.30 a gallon. Ouch. A meal for two at a family style restaurant cost us $50 or $60. We ended up buying things at the market or grabbing something at a convenience store. Not cheap, but cheaper.

On the positive side, Iceland is ruggedly beautiful. If you like your landscapes served up raw, Iceland is for you. Lava field after lava field. Powerful waterfalls. Treacherous glaciers. Iceland has them all.

Iceland also has fiercely independent citizens, nearly all of whom speak fluent English. They are also friendly and helpful nearly to a man. Good people the Icelandic.

The things we did on our vacation were not for everyone. Although I never felt the least bit threatened, our activities were on the adventurous side. We went into a tunnel carved into the glacier and into a lava tube. We went whale watching and took a boat ride among a collection of small icebergs. In short, we did what I intended for us to do. No concessions to my vision.

The things my vision interfered with were much more mundane. Stairs made of horizontally laid boards blended one into the next. I held on to the railing to keep from falling ass-over-teacups into the falls. I was useless in navigation because I could not read road signs. I also had to depend on my husband to read overhead menu boards and flight information in the airports.

I took lots of photos but some of them are badly out of focus. Note to self: always check to see if the autofocus is really on.

So that is pretty much it. We saw a lot and did a lot. AMD did not interfere with my ability to go adventuring….as long as I had someone to read the signs and get me there in the first place! All told, our time in Iceland appears to have been a success. Continue reading “Travelogue: Iceland!”

SightSEEing

I think I have always known this about myself. However, planning this trip and doing the ‘blind travel’ research has really brought it into clear perspective. Specifically, I am a vision snob.

How did I figure it out? To begin with, 10 days in Iceland is expensive! Afford it? Yes, but it would have been easier with more time to save.  Why this year? The original plan was a Canadian maritime cruise that was half of the expense.

The reason we decided to do the Iceland trip this year is because I want to SEE Iceland. Next year I may not be able to.

I admit I have been a bit perplexed by all of the blogs and other asundry offerings on blind travel. What is the purpose of going sight-seeing when you cannot see the sights? Like I said: vision snob.

Since there are accursed many of these ‘blind travel’ offerings there has to be something about traveling without vision. I mean, some of these people are not just a little fuzzy; they are big B blind! What do they get out of it?

I found a post by a woman with very low vision. She was talking about traveling in California. The post was entitled Traveling Blind: A Sensory Experience and that title pretty much says it all. The author, as well as some other blog writers on the subject, talked not about seeing the sights but about soaking up the experience. She spoke of slowing down and being truly mindful (there is that word again!) of everything around you. She spoke of the quality of the air and the differing songs of the birds. She talked about the proprioception experience of riding a San Francisco trolley car. In short, she spoke of the whole person experience of being in a new environment.

The author also talked about being overwhelmed and frustrated on other trips. It sort of sounded like these were ‘sightseeing’ trips. You know, the bus drives past and gives you a ‘photo opportunity’ of something beautiful or historic or awe-inspiring.

If this is Tuesday, this must be Belgium. Too fast paced and definitely utilizing the wrong sense for someone visually impaired.

So, apparently the message is you can enjoy new experiences through your other, five senses (including proprioception) but you have to slow down and experience it first. Sort of a new concept for a vision snob but unless the clinical trials do great things, it might be the way of my future.

I gave it some thought this afternoon. My friend and her husband had me kayaking. Maybe the last time for the summer. After fighting my way up river for about an hour, I turned around and floated back down. The sun was warm, but not too warm. The breeze played over my skin. My hands trailed in the water and I could feel the water passing through my fingers. I heard ducks and geese and a kingfisher calling. Not too bad.

Now I admit I am far from ready to give up my vision – my monocular allowed me to see that white speck on the shore was an egret. Score! – but experiencing my time on the river through my other senses did have some positives.

Maybe these ‘blind travel’ people have something after all.

The author ended her piece with a quote that I am going to steal:

“Certainly travel is more than the seeing of sights; it is a change that goes on, deep and permanent, in the ideas of living.”
Mary Ritter Beard

Continue reading “SightSEEing”

Leaving on a Jet Plane

In less than 48 hours I will be boarding an international flight to Reykjavik. Getting through security is a pain when you are whole and healthy. This will be my first experience as someone with a (mild) visual impairment and a LOT of STUFF.

Planning and preparation, as usual, appear to be necessary. I have been thinking about the monocular, glare glasses and prescription glasses hanging around my neck, not to mention the reader, telescopic TV glasses and iPad mini I will have stuck in my pockets and I am thinking I should probably shove them all in a plastic bag before I get there. Grabbing one bag will be easier than recovering half a dozen things from the tub.

AFB AccessWorld published a 2012 article on air travel. While some things are probably now different, much of the information is still relevant. For example, there are TSA regulations about the screening of the visually impaired. However, no matter what it may say in the regulations, reality can be very different.  NFB suggests not getting in an argument with the TSA agents. At the time they have the power and can make you miss your flight. File a complaint later from home, safe and sound.

If you are significantly handicapped and cannot find your way to and/or through the metal detector, you have the right to request assistance. If you are fearful the x-ray machine will harm your electronic, access equipment, you may request a hand search. It is also your right to ask the agent to collect all of your stuff and/ or to double-check for you.

If you use a cane, your cane will set off the metal detector. Be prepared to have it inspected separately.

If you use a dog, your dog will also have to be inspected. Be sure to have documentation attesting to the facts that he is a service animal. AFB stresses you should not be separated from your animal. AFB also stressed your dog’s harness will not be removed in the process of further ‘wanding’  and a pat down. The officer should ask your permission before he touches your dog.

If your dog requires a potty stop before boarding the plane, you may have to be screened again. However, I have been in many airports with doors opening onto the tarmac.  Finding a kind airport employee with a pooper scooper may save you from all of that. It is worth a try. Most people are kind and many are dog lovers.

AFB put two resources at the end of the article. TSA Cares is 855-787-2227. My TSA App is also available. Continue reading “Leaving on a Jet Plane”

Accessibility by WAH