eSight eyewear

I received a note recently from Shane in Ottawa, Canada about the much talked about eSight eyewear:
“My wife and sister in law both have Stargardt’s (they’re now in their 50’s).

I wonder if you’re aware of this new breakthrough high tech device for people with low vision just launched in both Canada and the U.S (in the U.S through Chicago Lighthouse)? Stargardt’s patients, in particular, benefit tremendously from the technology (including those in my family).

Here is the website.www.esighteyewear.com/

In particular, please watch the videos and read the news stories which are inspiring and have received national attention over the past few weeks and months.”

Has anyone else tried eSight eyewear?

Visual aid for cooks?

I tend not to use my recipe books now due to my inability to see the text but one can find all sorts of recipes on the web. This is a real bonus for us who are visually impaired as we can see the recipe with ease using Zoom Text or other magnification programs. I usually copy the recipe text and paste it into a Word document enlarging the text size to REALLY big :) I saw this little nifty idea on Facebook: By using an everyday skirt/pants hanger to clip the recipe into and hang on a cupboard handle, one avoids back ache if recipe is on the counter and the splatters from ingredients or messy fingers!

Anyone else care to share other tips and tricks to use when one is a visually impaired cook?

Paying problems

I have just read an article in the national Swedish newspaper that there is going to be fewer and fewer bank machines/ATMs here where one can get cash from one’s bank account. This is due to the fact that Sweden lies ahead of many other countries when it comes to paying by card. As a visually impaired person, this fills me with alarm! I tend to use cash a lot as I find the bank/credit card readers in stores, restaurants etc. too intimidating and hard to use! First, there are so many card reader models and just to find the slot to insert one’s card can be hard! I then try to focus on the number pad to insert my PIN number but, again, models differ in the number of rows of buttons so I am never quite sure if I am hitting the right combination. Text and/or figures obviously then appear in the tiny, little card reader window and then one is expected to press the OK button … but what am I saying OK to?! I cannot see a thing in that little window! So, I dare to press the OK button (once I have found it) and, sometimes, given a small receipt to sign under … again, for me, hard to read so not sure what amount I am signing for let alone find the line where I am supposed to sign! I do not wear glasses and, most people tell me, do not look like I am visually impaired so, on the few occasions when I have asked for assistance or explained about my visual impairment, I notice a sigh of annoyance, a look of disbelief and rarely, service with a smile.

On the other hand, bank machines/ATMs in Sweden (and in other countries although I, once again, tend to take cash with me when going abroad!) are larger in every sense of the word …. larger keypad, larger text on screen, lights to indicate where to insert card, where receipt will appear and where money will emerge! There is also a place where you can insert a set of headphones (if you can find it and just happen to have them with you!) if you want help via verbal prompts. Not all of us who are visually impaired can read braille but I am sure it is welcome by those you can! I often wonder what kind of test group they had for advice when designing new bank machines?

I will now recall a sad little story (for me!): A new model of bank machine was introduced in Sweden in the past year. I had never used it before and not been given a “guided tour” by my kids but decided to be brave and entered my PIN code as usual after choosing that I wanted to withdraw cash. However, the card was ejected from the machine … but no cash. Silly me, I thought, I had somehow accidentally pressed the cancel button. I still had some cash in my wallet so walked away, no other people stodd in the queue. What I did not realise was that the new machines were MUCH slower than the old ones and, in fact, my money had come out after I had left! A nice “bonus” for the person using the bank machine after me :(

That ends my grouch for today!

Concentrating on what I CAN do

As I have a disability, it is all too easy for me to wallow in self pity and dwell on what I CANNOT do due to the disability with regards to sporting activities … or, that I think I cannot do. I can get so much more out of life by just trying but also concentrating on what I CAN do instead. We are all aware of our limitations due to Stargardts but, as my dear Mum used to say to me “Your eyes do not work that well but everything else does and you have a voice”! In other words, ask if you need help. It is wrong to totally rule out things that we think we CANNOT do. With a little bit of help from our friends, maybe we can! It does not mean that we cannot TRY things that maybe are out of our comfort zone or beyond our physical limitations … give it a go! Some years ago I was asked if I wanted to be in a darts match … ha!ha! I thought but went for it anyway. I could just about see the actual dart board but could not see the numbers or line up and aim at the desired number etc but I threw the dart and just hoped it landed on the board .. and I had fun! The others told me my score and gave me instructions as to the right or left if I wanted a particular score but the main thing was that I gave it a try. There is no way we can get the same challenge and have the same ambition level as the normally sighted, but we can have fun nevertheless :)

The same applied to when I played boule. A friend stood with his toe near the little jack when I should throw my boule …. again, I had fun just trying.

I love to run. Jogging is something that you do not need great vision for. OK, so I choose where to run and avoid the paths in woods with many small roots that can bite feet or trip up. I invested in good running shoes as I tend to run on roads that obviously have a flatter, but harder, surface. It is also important to wear a reflex vest so one can be seen, I never run alone when it is getting dark. When a friend suggested runnning in a 10 km “fun run” I thought it would be too hard … I may get lost! … but, never fear, always MASSES that run in fun runs and I just play “follow the leader” :) But, if one does not feel comfortable running alone, find a running buddy.

I have never tried golf myself but found Lefty’s account truly inspiring (he has Stargardt’s) … read it yourself.

So, what sporting activities have YOU tried that you thought would be hard because of your Stargardt’s? Share with us :)

Eye contact and facial expression

“Across the crowded room, his dark, sultry eyes gazed into her smiling, blue eyes and showed that he was indeed interested in her. She in turn, fluttered her lashes to show that the feeling was mutual …” – I just wonder how that would be in Real Life?! :) With the inability to have eye contact with others (unless they are standing/sitting very close) due to Stargardt’s from about the age of 14, one can feel cut off and a bit of a social outcast when totally missing out on this type of contact. OK, so not only the girl/boy meeting scenario but the subtle signs/messages that can be shown via eye contact and facial expression are lost on me. When, across the room, they raise their eyebrows in shock or frown in disbelief, when they wink in agreement to something I have said, when they indicate a direction by the shifting of their eyes to the right or left, when they have a poker face but smile with their eyes … all of these are lost on me.

Across the street, someone you have met a couple of times but have not told that you have a visual impairment, smiles broadly and they are met by your blank expression …. what do they think? Will they smile next time they see you? … I do not think so! :( Friends who can wear glasses but hate wearing them for one reason or another, laughingly say they have that problem too … but they CAN put their glasses on …. if only I could!

How have you coped with the inability to have eye contact? Any smart tricks/tips?

Using a white cane

I am just wondering how many of us who have Stargardt’s actually use a white cane? I have talked about using one in my post about airports but thought I would post on the subject once again.

Hospitals are another place where I use my white cane a lot. However, in one of the comments to a post, it was mentioned that the medical profession is most unsympathetic when it comes to disabilities … and I concur! Hospitals tend to be real rabbit warrens with a maze of corridors, small room numbers, name plates etc. placed high up and out of visual reach of (probably) many visually impaired. I have had a number of medical appointments in the past couple of months which have involved visiting various departments in local hospitals. There is usually an information desk placed near the main entrance when one can get directions … if one can just remember them all! Once you get to the relevant department and find the reception desk to check in and pay, a number needs to be taken but a) the number on the slip is usually very small and b) the number on the digital monitor high up is neigh-on impossible to read/decipher! Some very kind nurses do shout out the next number which is of great help … IF you have been able to see that little number on the ticket! If you are first called up by a nurse, they can often offer great assistance and even offer to guide you by your elbow or politely ask how much you can see. However doctors on the whole simply expect you to folow their (usually fast) pace back to their office. They invariably point out results/graphs etc. on their computer screen or on a printed paper … so one quickly has to point out that one is unable to see such items. When it is time to leave and you ask politely for them to show you the way out (they know their maze of corridors very well, first time for me), they invariably wave a hand in the general direction of the door and corridor!

Another instance when I find the white cane does help is anywhere a queue number ticket is necessary – and boy! there are a lot of those places today – banks, drug stores, train ticket offices, liquor stores and many other shops. In the “olden days” we just formed an orderly queue and waited patiently in line! Nowadays, after having determined which of the buttons I should press for the ticket for the relevent service/queue, I usually ask a nearby person what is the number on my ticket and what number are we on now. I then carefully count the “buzzes” as a new queue number appears on the digital monitor. Of course, it is also impossible to see the number of the desk/counter one should go to in order to get service! Thankfully I usually get great help from fellow queuers who tell me as my number approaches and, finally, show me which desk/counter to go to.

I cannot say that I need to use my white cane too much in order to avoid obstacles along the way .. my field of vision is pretty good so I am able to see such. However, a white cane helps me a great deal when going DOWN stairs/steps … people then accept that I will go slower as stairs can be a nightmare if edges are badly marked. Even though I know each step is of a uniform size, I still falter a lot.

I found an interesting article on VisionAware that raises some good points, What Will People Think About Me if I Use a White Cane?. I think it is probably true what is said here about thinking that everyone stares at you just because you are using a white cane. I do feel very self-conscious when I use a white cane but, hey, anything to make Life a little easier (and safer), right?! :)

iPad for us?

I have now used a wi-fi iPad for a few months but, I hasten to add, I have not investigated its full potential as yet. My son helped to set up my e-mail, install the weather app, showed me how to take photos and look at them using the zoom function and, most importantly of all(!?), how I could play Rumble or Ruzzle as it is now called. Ruzzle has taken up MANY hours of fun, time-wasting entertainment time for me but now I plan to make full use of my new buddy, Paddan.

For those of you not familiar with Ruzzle, it is a 16 letter matrix word game similar to Scrabble where the aim is to challenge/invite friends to find as many words as you can in the allotted two minutes. Three 2-minute rounds make up one game. When I began playing, I was useless … the time aspect added to the stress and my fingers did not do what my brain wanted them to do and I did not “see” the possible words! On my “bad eye” days I often mistake O for D or C for O etc. Playing many practise games before challenging “real” players helped a lot and now I win more of the games. I find I usually have a lot more shorter words as it is harder for me to get an overview of the full 16 letter matrix holding the iPad quite close to my eyes. I usually concentrate on a 4 letter corner at a time and find as many words as I can before moving on to the next corner … so I tend to win by the amount of shorter words rather than on the number of letters in longer words. I also found that Ruzzle uses a very strange dictionary with many “made up” words as well as not accepting “real” words! OK, that is enough of Ruzzle for now!

So, my quest to learn about more features hidden in Paddan …. Apple describes the accessibility Vision adaptations that are available and useful to those of us with Stargardt’s (or any visual impairment) very clearly.

I have not yet tested/used the voice over function, tending to hold up Paddan closer to my eyes instead. However, this tends to give me “Pad arm ache” as my bubby Paddan is no feather-weight! I also find my nose unknowingly “presses” on some link/icon and takes me somewhere I do not wish to be! I will test the Voice Over and tell you in a later post how I have found it. In the meantime, I will also surf, read and gather links relating to the iPad and the visually impaired and include them on future posts under the Technology category.

It would be good to hear from any other visitors to stargardts.net who also like their iPad and who would like to share iPad tips and tricks.

Choice of job/career

When you have Stargardt’s Disease, choosing a career can be a challenge and, at the same time, a frustration. From day one I wanted to be a teacher but was not able to get into Teachers’ training college way back then as they said my poor vision would make the studying at college too difficult for me. This, I hasten to add, was pre-computers and the onset of the adaptive equipment era :) In later years, I often wonder how I would have coped with a career in teaching; not even being able to see the facial expressions of the kids in the front row of desks and having great difficulty in seeing the actual kids in the back row of the class, managing to read and mark books/tests, reading out of a book to the kids, taking more time than norm to prepare for lessons, coping with the group on school outings, the administrative paperwork that is also connected to teaching these days etc. There are those of us who can overcome all odds and pursue their dream career … but I was not one of them.

Part-time work for me as a teenager was limited … using a cash register in a shop/restaurant etc. was impossible with the vision I had, let alone being able to see price tags. Any service job involving eye contact was also out of the question! So, how did I earn money as a teenager …. delivering newspapers, babysitting as well as housework for the families where I babysat. The families understood that I could always see their kids … but maybe could not see Junior’s runny nose from across a large room!

So, I did not pursue my dream career but what did I do? First I took a job at a children’s home thinking that I still wanted to work with children …. but, after 6 months of very long hours and few weekends off tending to 14 kids of varying ages, I felt like I had been forced to become a Mum earlier than I had intended! I then went through some office/administration jobs (always making small adjustments, for example, changing small text labels to large print labels) but then the offer of going to the RNIB Commercial Training College in London came up. I could go to this residential college for 6 months and learn to become a certified audio typist/secretary. After that, I then worked in London as a secretary with all levels of management. I had a fulfilling job but enough energy left to enjoy London’s nightlife in my 20s!

Now I work as a consultant, a web developer (which I think as being artistic secretarial work!), with numerous pieces of adaptive equipment to help me with my daily work. I use a CCTV, a large monitor (Samsung SyncMaster 24″ LCD wide screen) using a resolution of 1920×1200 with Zoom Text 9.1 set to a magnification of x8. I also use the Zoom Text black/yellow keyboard.

That is my story … but how have others coped with the studying involved to get the qualifications for their dream career/job? Determination, a stubborn streak, patience and the ability to put in more than 100% effort into the studying in order to keep up with other “normal” course buddies must play a huge role. Today, adaptive equipment sure does help …. but it does not actually do the work for you nor give you better vision! The motto “where there is the will, there is a way” is a good one! Lastly, we know that our voices can be heard so if we need help, we can ask for it 😉

“Summertime and the livin’ is easy …”

The brighter, lighter days of summer certainly make living and getting around a lot easiaer for me with my Stargardts! Living in Sweden, the summer days are longer too and late evening walks are a joy. However, once we change the clocks at the end of October, I feel like I am forced into a deep, dark cave which I have to endure until, after December 21, the days slowly … and I mean oh so slowly … begin to get a little lighter. I can then begin to walk with more confidence with the aid of lovely, longer, lighter, brighter days, and hopefully with the added bonus of sunshine, in the summer months.

Daylight is my best buddy. OK, I can still stumble over roots, edges of sidewalks, uneven slabs etc. in the middle of the day in the summer but it is nothing compared to dark winter mornings and afternoons when ice and snow are added challenges underfoot when trying to walk from point A to point B with some dignity.

OK, so in the summer months it can still be hard to find friends on a crowded beach or at an outdoor restaurant but nothing compared to the challenge in the winter months of finding friends in a gloomy, poorly-lit interior of a restaurant that also throws in a few level differences for fun!

Jogging for me on a bright sunny day can be hazardous – jogging from bright, open sunny spots into shady, shadowy woody areas can make me act like a cat on a hot tin roof …. maybe the shadows hide roots ready to bite my toes or trip me up! My eyes take longer than the norm to adjust from light to shade thus hindering me from jogging with a nice, relaxed body position!

Finding the right sunglasses is a hard task I feel …. if they are too dark I just end up having to take them off all the time, if they are too light then I still squint because of the sun. However, with the use of sunglasses, the eye contact problem is less obvious.

As a Stagardts’ sufferer, please let others know of what you like most about summer … we all have our preferences and maybe sunshine is not your buddy?!