I had another post almost ready for this month's entry but some really cool stuff happened just recently that I think will upstage that...
On Facebook I discovered a group about awareness for Stargardt's Disease (S.D.). This is the condition that caused my visual deficit. Cool. I thought I'd join up and see what folks were talking about.
One of the posts was a list of bloggers who have S.D. This caught my interest so I opened up one of them. I started reading the blog and comments and was quite moved by reading a dialogue between the blogger and a lady in her 30s who'd been recently diagnosed with S.D., and was sounding quite upset. The blogger gave her some reassuring information with a personal touch and the whole thing reminded me how wonderful peer support can be. I've been living with this condition since I was a kid and can likely ease the worries of some people who are fretting about what's to come. It will be great for me also to have people to chat with who can relate directly to some of my experiences and offer their perspectives. I've got to work on my technical skills though because I wasn't able to figure out how to post the comment I composed!
Another recent discovery was the movie "Going Blind". It's a documentary about a man's experience of losing his sight and learning about what help is available for people like himself. I haven't seen the documentary but my impression is that it outlines some services, products and strategies people use to manage with visual impairment and the fact that hardly anyone is aware of many of them. Of course I thought immediately about the checkered eye and how it would have been perfect to have some info about it included in this movie. Well that ship has sailed, but I've had some contact with the people responsible for the movie, and I'm optimistic about doing some sort of cooperative thing. They also have a Facebook page and the host posted a link to the checkered eye website. It got 23 "shares"! As a result, I've been getting some really widespread queries and orders.
And of course my own personal recent goings on: I got officially approved as a candidate for research into treatments for S.D. All I had to do was give a blood sample which was then tested to determine if I have the genetic mutation associated with S.D., then wait a year and a half for an appointment with a doctor who could verify by examining me, that I in fact have S.D. The final step felt a bit like an awful fuss to gather the same information we've had for many years, but now they have current photos of my retinas and I got to take a wee trip to Toronto with my hubby.
So on my trip I was delighted with accessible literature in a couple instances. First, at the Delta Chelsea Hotel, where I requested accessible literature when I made my reservation, I was very happy to find a large print version of their room service menu and emergency procedures, and a phone with an oversized keypad. I've been asking for these accommodations for years and this is the second time they've ever been succesfully provided.
Naturally when my hubby and I went for a bite and a beer at Jack Astor's, I asked if they have a large print version of their menu. Expecting the usual response, I was surprised, as was our waitress, to learn that they did in fact have an accessible version which had both large print and Braille. Super!
My reading software must be from the US because when I was using the initials as an abbreviation for Stargardt's Disease without periods, it was saying "South Dakota"! I figured I should add the periods for any readers who use screen reading software.
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