Interpreting disappointments

Stargardt's has defined my choices in life. It has also defined other people's choices about me.  Every day I face a  prejudiced world, a world that only understands "normal", that often tries to weigh me down with its distorted perspectives and its coloured opinions.


Most of the days I can easily shrug them off, but sometimes they settle deep. Some I manage to remove over time, but some just linger like so many other things in life.


I could have finished my Ph.D in French literature some years back, had the doctors not told me to stop to read.


I would have not lost a relstionship, had they not disabled me in their imagination. We were not left any choice. I've still not been able to deal with that empty space.


...


There are other things that lie beneath. Things that we think we are comfortable with. But we forget the dimension of time. We forget that everything evolves, even the past.


Some people say they have become comfortable with Stargardt's. Am I comfortable with Stargardt's? I don't know. I'm not even sure what is the right answer. Acceptannce and being comfortable are two different things.


Discomfort can be positive. Like an exercise in reverse. It can thrust you forward to force you find a way. If people act as mirrors and if we are constantly trying to adjust our reflections to their mirrors, perhaps I constantly adjust my life to not be that reflection. Because their reflections are all "normal". And I'm a different person.

All about Pens

I used to like sending postcards to my friends. Now it is almost impossible to decipher what I write. There was a time when writing was the only way to self-discovery.

These days I try to avoid writing. I take my laptop for meetings instead of a paper and a pen. I take notes on my phone or PC. Yet there are situations when the use of a pen really cannot be avoided. Then, I find I must avoid cursive writing if I want to read it. 

Recently, a fourth grade student designed a pen  for visually impaired children to better recognize shapes and letters. And just out of a small spool of yarn, paper clip and a paper cup attached to a hollowed out pen! 

I thought I'll do a post on two pen systems for low vision which might be useful for different people depending on their needs.

PenFriend - RNIB's voice labeling system, PenFriend,  has been there since some time now and still very useful for both low vision and the blind. You can record your voice onto dime sized self-adhesive labels that you can stick on any household objects. And then touch it again with the pen and listen to the label/note. Unlike the demo video, I can still distinguish between a can of tomatoes and a can of beans. I really liked the idea about voice labels on medicines. Especially I find it difficult to read the expiry dates and sometimes I don't know what I'm popping has long expired. It can be useful for prescriptions and labeling important documents and posts which are unreadable.  These stickers can also be used as tiny reminders or notes that I can stick on pretty much everything and anywhere.It comes with a 70 hour of recording time and you can also download mp3 and audiobooks on it from your PC. PenFriend is available over Amazon for $125 and comes with 125 labels. Extra labels would need to be purchased. A pack of 381 labels is for $30.

Livescribe Echo SmartPen - This is more of a recorder pen that lets you record everything you hear,say or write. Add voice notes to handwritten notes and convert these handwritten notes to digital by using an app. Just like the SmartPen labels, Livescribe also requires a Livescribe paper which has a pattern of dots that enables to recognize and record pen writing movements. A very useful device for those who do not use or carry around their iPad or iPhone, in a classroom or in a meeting or for maintaining an agenda or a diary. It is priced at $134 for a 4GB Echo SmartPen. Livescribe claims that the special compatible paper can be printed but most reviewers seem to contradict this point. Lot of people have also complained that the handwriting recognition app MyScript doesn't recognize correctly even the clearest of handwriting. And if you need to record or write a lot, the cost of paper will soon add up to be more than the cost of a smartphone or an accessible all purpose tablet. 

Intelligent screen readers ?

It is getting difficult for me to translate these days. For some reasons, full view magnification is no more working on my Windows 7 PC at work. I tried testing several third party accessibility software but I'm yet to find a screen reader which automatically recognizes and switches between two languages on the same page. 

I have to work on a translation tool whose interface is similar to this image. Source text is on the right side and I type on the left side in target segments. I need a reader which can recognize both French and English and swap between the two when I move my cursor from one segment to another. 


Does anyone know any intelligent screen reader tool which can solve this issue? 


I currently work with 200% magnification but I would like to use more and more of screen reader technology if I can to avoid strain. 


Update - Tried ZoomText 10. Nice upgrade from v9. Reader still supports only the language selected during installation. It is still not bilingual, Looks like either I need to adapt to how a tool reads French in English accent or just drop the idea of a Reader completely! :(

Mistrust

It is always difficult to convince people that we are visually impaired. They look at me and see a healthy young woman who can look at them in the eye at an arm's length. And they think I'm just fabricating stories about SD to get a seat in the front row.


I was late for a theatre performance today and they sent me to the show organisers to check for a front row seat. I had to explain to the director for 15 minutes before he was partially convinced. He kept staring at my eyes. I felt very uncomfortable and I didn't want to speak anymore. I went inside and requested some people in the front row to give me a seat (this time I didn't tell them I'm visually impaired). And I got a seat! 


What do you do in such situations when people refuse to help you because they don't trust you that you are visually impaired? 

Second Patient with AMD treated safely in Stem Cell Clinical Trials

Good News! Advanced Cell Technology Inc. announced treatment of a second patient with  dry age-related macular degeneration (AMD). In a press release, Gary Rabin, chairman and CEO of the company said that the patient is recovering well:  “So far, there have not been any complications or side effects due to the stem cell-derived RPE cells, and we will continue monitoring the patients for safety, tolerability and efficacy of this therapy,” 

The clinical trials are designed to determine the safety and effects of sub-retinal implantation of retinal pigment epithelial (RPE)  cells derived from human embroynic stem cells. ACT trials are one of the four ongoing clinical trials for the treatment of age-related macular dystrophy and Stargardt's macular dystrophy.

Earlier in January, ACT announced safe stem cell transplantation treatment of first patients. Currently, the company is conducting three trials in United States and Europe. Each trial will have 12 people, who will be monitored for safety and tolerability of hESC-derived RPE cells at 12 months.

Google's New Context-based Spell check

Google will soon roll out their new context-based spell check integrated in their browser Chrome. It might be a big relief for people with dyslexia or low vision as it analyzes the context to recommend correct spellings

So if you wrote "Icland is an icland". It will suggest "Iceland is an island". So totally cool!  Here is a link for more details : Smart Spell Check



Update: For Chrome users, a grammar and spell check Ginger extension can be downloaded from here

Saffron supplementation

I've been hearing about the good properties of Saffron and its use in arresting macular degeneration since quite some time now (2008). There is a clinical trial being currently conducted in Italy on people with Stargardt's and the results will be out by July 2012. It seems that saffron does help to reverse or stop degeneration at an early staage of AMD. There is no evidence yet for its application on SD. Minimum dosage recommended is 20 mg per day.

Saffron is seemingly a very good anti-oxidant for eyes. It also has some side-effects and you should check your doctor before taking saffron supplements. Saffron is commonly used as a spice in India and I know that if you consume even two three tiny threads, you end up having hot flushes.

Here is the link to SD related clinical trial for this: Saffron supplementation in Stargardt's Disease


Stem-cell and gene therapy trials are also in Phase 1. But it will take some more years to really understand if they are safe or not.

Self-defense techniques

Last weekend I enrolled myself for jiu jitsu training at a combat sports academy nearby. With more vision loss, I feel I've very less preparation time if I'm attacked in the street. And I may or may not be able to run. Some people suggested using a folded white cane or pepper spray as self-defense measure but where is the time?


After a lot of research on which type of martial arts to choose, most of my SD friends recommended Jiu-Jitsu as it is more about using technique than muscle power. I like the idea. And I'm already very excited thinking about all the moves that I read about and watched online. 


I've told my instructors that I'm visually impaired and they might need to adapt the classes according to my needs. I start in 2 weeks! 


What kind of self-defense training works best for you?

Another Interesting Portable Electronic Magnifier

Enhanced vision has launched Transformer, a portable USB magnifier that can be easily connected to a laptop, monitor or LCD. It has a 330 degree rotating camera which captures the image and reproduces the text on your device in your selected font/ background colour. It provides upto 30x magnification and 28 custom preselect colour modes.

Here is more information: 

http://www.prweb.com/releases/2012/3/prweb9241477.htm 

Price is not listed on their website but I feel it will be expensive. All products by Enhanced Vision are unfortunately very expensive. 

Using a white cane

I fell from stairs today. I wish I could use a cane. But in India, this is not an option. I would get mugged and I don't know what else if others know I'm vulnerable.

Mostly I don't have problems, but at night, I find it difficult to guage surface changes on road. I've not yet stopped running in the evening though. But I am thinking of moving my running schedule to early morning.

Another thing which has been bothering me off late is self-defense. If I can't see what is coming, difficult to defend myself. I'm going to check this weekend for any self-defense training course if available nearby. Worse case I will order a pepper spray. 

For those of you who can use a cane, here is a "how to" video on Cane Travel