Thursday, March 7, 2013

March Update

Got over the Bump in the Road
If you follow this blog you might remember a previous post A Bump In The Road. At that time I had some difficulty with my health insurance and missed my 6-month follow-up visit with my ophthalmologist. well Tuesday I was able to finally go to my long awaited appointment. I can't give specific details on the exact change in my vision because I have to get the paperwork from my Doc. In April I'll do a side by side comparison between my first visit and this latest one.
What I have noticed is a slight decreased visual acuity in my eyes. I was able to read the first two rows of the eye chart. It was difficult to read the 3rd row though. I was surprised that my left eye is better than my right, I always thought it was the other way around. Also my doctor wrote me a referral to see in his words a "Super Specialist" so look out for future posts.

Another Way for the Stargardt's Community to Connect
Today I created two new communities on Google Plus. I have had the pleasure of meeting many fellow Stargardt's patients on Twitter and Facebook, but I know that everyone doesn't use those social networks. I noticed that Google+ didn't have a strong Stargardt's presence so I decided to create one. The community feature on the social network has its advantages over Twitter lists and Facebook groups. In communities you can better navigate through pasts discussions which eliminates redundant conversations. I made one group that is public so all posts can be searched on Google and I made a private companion support group for people who want to connect with other patients.
Since Stargardt's is a rare disease and patients are so widely spread around the world its vital for us to connect. The groups are open to everyone around the world and their families. 
They can be found here:
The public group - Stargardt's Disease Awareness 
The private group - Stargardt's Disease Support 

Before I go I have to give special thanks to Beth Omansky who is the admin of one of the two Stargardt's groups I'm in on Facebook Stargardt's Central. She created the group a year ago for people who were diagnosed who needed a private forum to get info and support with dealing with this disease. So that's what inspired me to make the Google Plus version so that more people out there can get support.

Monday, March 4, 2013

Nick News: Out of Sight: How Blind Kids See the World

Nick News: "Out of Sight" S1
Get More: Nick News Episodes,Nick News,Nick News Games

Back in January Nick News aired the documentary Out of Sight which gives a brief look into the lives of six kids who are visually impaired. Each child eloquently explains their experiences. The documentary is brief but gives a great overview of showing how technology has allowed them to be independent, what being visually impaired means to them, their dreams and how they handle having a sight impairment in a sighted world. I think this is great for parents of children who have been recently diagnosed with Stargardt's and even adults. Often when we are first diagnosed or have to face any perceived obstacle we focus to much on what we can't do instead of focusing on what we can do.
If you liked this post you may also be interested in reading the following:
Stargardt's Stories
Sami Stoner: Teen Cross-Country Runner w/ Stargardt's 
Inspiring Toddler
Some Misconceptions About Blind People

Friday, March 1, 2013

In the Pursuit of Chocolate, I found...

Godiva Clam Shell shaped piece of milk chocolate with hazelnet flavored chocolate filling.... yummy.
In the pursuit of chocolate last month, I found... no not sweets for my valentine but another overlooked use for my camera. In my post 2012 in Pictures I raved about how much I adore my Canon Powershot ELPH 310HS camera. So what new thing did I find? Well its use as a low vision aid. 
During the holidays back in December we got a box of assorted Godiva chocolates. The box came with a description of all the different chocolate flavors but the print was so small. Stargardt's disease and other forms of Macular degeneration mostly affect central vision which makes reading especially small print difficult. So what I did was I took the picture on the macro setting. Doing so allowed me to zoom in on the picture to clearly read the print. Oh if you were wondering if it tasted any good.... it was delicious.
So have you ever found an alternative use for a product or device you've used. Or what low-vision devices do you use throughout the day, would love to know.

Thursday, February 28, 2013

February is...

February is the shortest month of the year yet so much goes on during the month. In contemporary culture where it seems we are inundated with so much information its often difficult for many organizations to get their messages out to the masses. So what organizations do is they have awareness campaigns that involve designating a particular month, week or day to bring attention to their causes. I've done it myself with a previous post about Eye Disease and Premature Babies. Guess what... this post isn't going to be any different well maybe a little different *smile*.

Wednesday, February 13, 2013

Discussion: Genetic Testing

By Jerome Walker,Dennis Myts (Own work) [Public domain], via Wikimedia Commons | Image Wiki  | Image File

"You are not the father!" I know, I know interesting phrase to start off this post with, but trust me read further along and it'll make sense. For those of you in the US who are familiar with daytime TV you know the phrase is from The Maury Povich Show. One of the most popular topics on the show deals with paternity of children which are conducted via DNA analysis. DNA analysis isn't just performed with issues of paternity but also in the areas of crime forensics and anthropological studies to name a few.

Often times when it comes to issues of genetics or DNA we are concerned with paternity or in criminal cases but not when it comes to having children. When I was first diagnosed with Stargardt's I was concerned with how vision loss would affect my ability to be a mother. (There are several wonderful visually impaired moms out there) I wasn't so much concerned about the possibility of passing this disease to my potential children or even on how I inherited the disease myself.

Now Stargardt's isn't the only inherited disease in the world but diseases like it do bring up discussions in family planning and genetic counseling. Many Stargardt's patients are advised to get genetic tests done so they know what form they have and for research. I myself haven't had the test done, but hopefully will so in the future. If you or a loved one has Stargardt's you can check out Asper Biotech's DNA Testing Services.

I just wanted to talk about this topic as a discussion. Just wanted to know if other Stargardt's patients have had the DNA tests done. I also want to know from others how do you think genetic testing will affect people's choices in family planning. Leave your comments below and share this post.

Monday, February 11, 2013

Sh#t People Say to Blind People

"Why is there braille on drive-thru ATM machines blind people cant' drive?"

Response: Have you ever heard of a passenger's seat

"Why is their signs in restaurants saying 'Braille Menu Available', blind people can't see that?

Response: Blind people have sighted friends and family.

"Why would blind people have an iPhone?"

Response: There's an accessibility app for that.

"I'm going to speak slowly and loudly to you so you can better understand me."

Response: So by doing that you're saying being blind means that I'm also deaf and have impaired comprehension.... okay.

"See if I cover my eyes I can see what a blind person sees."

Response: Actually a very small percentage of the visually impaired see darkness. Most do have light perception. 

"You're not blind you're faking it."

Response: Just because I have ambulatory vision (the ability to see around a room) doesn't mean I can see everything. (This is how most people who have low vision see.)

Monday, February 4, 2013

February Update & 111 Things List

Its time for an update!
I don't know if regular followers of mine remember back in November my post A Bump in the Road. I was having a little difficulty with my health insurance, well its resolved now. So I can get a better update on the state of my vision with my doctor. Also I have a question for anyone out there who lives in the New York City Metro Area. Can anyone recommend any good low-vision specialists? Feedback would be so greatly appreciated.

111 Things List
On tumblr which serves as my personal blog I created the 111 Things List. It could be described as a bucket list or even similar to a New Year's resolutions list. Its really based off of the 101 Things in 1001 Days List from The difference is this list isn't terminating like the previously mentioned list. When you complete one item you create another one, this way you keep creating your life experiences. I came across the 101 Things in 1001 Days list from Amy Schmittauer, who is a YouTuber and social media expert. She also made the video I watched that finally convinced me to buy my digital camera that I absolutely love. So shout-out to her. If you're doing something similar I would love to hear about it. You can visit my list here.

Other Things

I want to thank VisionAware for featuring this blog on their blogroll of visually impaired bloggers. So thanks!

Also I made a collaborative blog on tumblr called These Perspectives. I noticed there is quite a large visually impaired community on the site so I wanted to create a blog for people to share their stories. If you are on tumblr and would like to be a collaborator of the blog you can send me a message through my contact page which is here.

Lastly, if you use Twitter and you or a loved one want to connect with others who are living with Stargardt's you can check out my twitter list here.

Don't be shy to leave a comment on any of my posts. I made responding to my posts easier and you can post anonymously if you would like.

Friday, February 1, 2013

Michael A. Williams, Award-winning artist w/ Stargardt's

Michael A. Williams has Stargardt's Disease and describes himself as an "Inspirational Blind Artist" He's been creating outstanding art pieces since he was a child and was diagnosed with Stargardt's in his teens.

In the above video Mr. Williams talks about living with Stargardt's, his art and his mission to encourage the visually impaired to get involved in the visual arts.

Following link will take you to Mr. Williams website where you can view and purchase some of his beautiful paintings.