At the eye clinic

I have had Stargardts for many years and know what I have and how to live with it so, I feel, regular eye checks are not really necessary. However, I began to see “floaters” and a white halo in my right eye when it was dark so made an appointment to make sure all was as it should be.
I met a really pleasant eye doctor who had a look in my eyes after the drops had done their work. He said there was nothing to worry about and it was just yet one more wonderful stage in the ageing process :) He wanted to hear about who did the original diagnosis etc. and we had a lovely chat. I said that the back of my eye kind of looked mouldy to me (I had seen photos after various tests, e.g. flourescein angiography) and he laughed and said that sounded negative. He said I should say that the back of my eye looks like a Jackson Pollock painting … wow! that sounded much better! After looking at some of his paintings, I agree so the reference to mould in my eyes has gone forever :)

Using a white cane – 2

Here I go again, about the white cane! My brother also has Stargardts and visited in the summer. I asked him if he now used a white cane, he is nearly 64, I laughed at his answer, “I am in denial”! We have both had Stargardts since our early teens and have found ways to cope with it. However, when he gave me that answer, I asked myself whether I was in denial too … I am to a certain extent, as maybe we all are. Nobody wants to be different, unable to do certain tasks etc. and so we have our “tricks” to try and cover up that fact. I do use a white cane in places I do not know but, then again, I do not use a telescope device to look at notice boards for train times etc. I feel that there are so many people around who can see well so I can just ask to “borrow their eyes” :) I do not need to be super duper independent.
I visited my son in South Korea recently and did not sleep the night before the long journey home which I would do alone. My son could not understand my nervousness. He said “just ask” which is so true but is easier said than done. However, at the check in desk I did indeed ask for assistance and was accompanied by a sweet, trainee air stewardess who fast tracked me through security and took me right to the gate. She even came back to take me on board to help me find my sear even though I said I could manage! It was wonderful and I can highly recommend asking for assistance :) They even offered to organize assistance for me when I had to change in Helsinki … but I assured them that it was not a large airport/terminal and I would be fine.
Helsinki was a different experience. OK, I did not have to change terminals and the gate numbers are large but I still stood below them, with my white cane, peering up to see if it was indeed a 12, or was it a 13? … and not one person of the many that walked past, asked me if I needed help …. hmmmm ;(
How have you found the general willingness to help … either when asked for or not?

New WordPress theme

Stargardts Net is now using a new WordPress theme that should work on desktop as well as mobile devices. You will notice that it is not a drastic design change but a change nonetheless. I have received notes from Google telling me that the old format did not meet up to their very strict criteria … so changes were needed. The theme does not work exactly as I would like … but, on the whole, pretty good.
Many of us using Stargardts Net probably have the disease and so have very limited vision and thus we are not so keen on using mobile devices (or if we do, have to use all the accessibility/magnification tools available). I think Google does not take into account the subject and main user group of websites but that they should be adapted for mobile devices no matter what.
Anyway, I would be very grateful for comments/feedback on the new look and feel of Stargardts Net :)

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

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?

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?! :)

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?!