I am a 40 year old woman who has had Stargardts Disease for 30 years. This is a rare retinal degenerative condition that is not treatable with glasses, lenses or surgery. I started this blog to share some of my experiences with others who are affected by blindness or low vision.
I was excited to get this email today! She had trouble posting on the blog (as many other people have. unfortunately.)
I'm S, D's daughter. As Heather wrote, my mother had an eye exam with Chip, Heather's husband. When my mother and sister, who had accompanied my mother to the exam, asked Chip a bunch of questions about assistive technology, Chip told them what his wife used, and casually mentioned that his wife should really open a business consulting on these matters.
So, we followed up on that suggestion. We tracked Heather down and asked if she would meet with us. Not only did she meet with us, but she did some investigating and preparation ahead of time! Heather showed us how to use the iPad in the specific ways that would be of help to my mother, and including ways to make it more accessible.
At first my mother was quite dubious that she would be able to navigate around the iPad (she is in her 80s and not totally comfortable with all this new technology). She told Heather that this was not for her. Really what my mother wants is to be able to hold a newspaper in her hands and be able to read it again! Alas, that is not to be. But Heather was not to be deterred! She was patient and persistent and encouraging. My mother started to get the hang of it. It's not perfect --after all it's not a hold-in-your-hands newspaper. But by the time we ended with Heather, my mother had decided to get an iPad. So we did. And she's getting better with it and she's able to read her favorite columnists.
So, thank you Heather! I wholeheartedly recommend Heather as someone who is eminently knowledgeable about assistive technology for the visually impaired and wonderfully personable -- and who could resist those beautiful daughters!
As you may know, my husband is an ophthalmic technician so he meets people every day who are dealing with visual issues. A few weeks ago he met with an 88 year old woman and her daughter.
She (I will call her D) had just been diagnosed with Macular Degeneration. My husband being the friendly, caring and supportive guy that he is told them about me and how I should go into business consulting for people with low vision (an idea he and my mom have been kicking around for years!) He told them about my blog and shortly after that I was contacted by D's other daughter (let's call her S.) She explained that her mother was interested in reading the New York Times and Boston Globe on a tablet. We set up a time to meet and that day was today.
What a great visit it was! A few days ago in preparation, I had downloaded the NY Times and Boston Globe apps onto my iPad. I was able to show them how it looks and how to zoom in and navigate through to different sections. She was mainly interested in a particular column in the opinion section, and the comics pages. :) I also showed them how to have the iPad speak your selected text. This woman is hard of hearing as well as losing her sight but she liked the idea of having it read aloud as she followed along reading.
I explained that it might take a while to get used to the touch screen commands but it was evident from how she responded while testing it out, that she will get the hang of it. I know people 25 years her junior who are scared of technology. She is not. She reminds me of my late Gramma Connie who, at 91 years old would send emails with animation, e-cards, and would IM with her daughters across the country. One time, Chip and I were visiting her and she was very upset because her computer had crashed and she was without it for about 2 days. Thanks to my Dad, uncle and aunts a replacement was soon attained and she was happy again!
During today's visit, D decided she wanted to go to the Apple Store and buy an iPad...Today!
I have to say that it feels pretty awesome to help someone out like this. She obviously really enjoys reading her newspapers and has been struggling with it due to her vision. If that is something you do each and every day, you should not have to give it up if it can be rectified through technology. I loved her attitude and her eagerness to get started with her own iPad.
She and her daughter were very appreciative of me and we talked about being in touch and possibly meeting up again.
I am appreciative of them as well. First of all, I respect S for coming out from California and taking the time to understand her mother's needs and help her as best she can. And as for D...what a great lady! As I said, she reminded me of my grandmother and that was cool because it is always heart warming to think about Gramma Connie. Even some of the things she said could have come right out of Connie's mouth. For instance, when I explained the reason for the title of my blog "Are you looking at me?" she told me that when people ask me that question I should respond by saying "No...You are too ugly to look at!" I LOVED THAT!
Oh, and when they first arrived at my house and Chip was taking the kids out for a while, Ayla (who is 2 1/2 years old) insisted on giving each woman a high five!
It helped me to see that I can really make a difference. And that my demonstration of the iPad was good enough to get her to want one for herself! It is nice to sit down with people who are seeking advice and know I can help them just by showing them how I do things. I am not trying to conjure up information I learned from school or books. I am simply being me.
Maybe this consulting business isn't such a far fetched idea!
Its 1:30am...What am I doing awake? This is not the best way to go about writing a blog...Go for weeks without writing. Then stay up late one night because you can't stop thinking and then decide to write! Oh well. I m used to being tired!
Anyway, many of you know that I walked in the Boston Vision Walk for the Foundation Fighting Blindness last Saturday. It was a great event! And with the help of friends and family I was able to raise about $1900! A huge thank you to everyone who supported me and my team. I have been seriously overwhelmed by the generosity. And it feels good to be able to contribute to the fight for a cure.
Our team, G Force, consisted of me and Chip, our two daughters, my sister, and mom and dad. The kids rode in their double stroller and for the most part were well behaved. Not counting some major whining from our 2 year old. The weather was perfect and the scenery along the Charles River was beautiful.
When I do events like this, I see just how lucky I am to have the sight that I do have. Many of the other walkers walked with canes, guide dogs, or a person on their arm. I also realize how awesome and supportive my family is. My parents were happy to be part of this and made the day extra special. The kids got to play on a cool playground and then we all went out for a nice lunch. It was a fun day. A positive experience all around.
Oh, and the Boston Red Sox won the World Series a few days ago. That was pretty awesome!
As I hope I have shown, I try to stay positive about life. But lately things that have happened to people I know have been making my heart ache. I think that is one of the reasons I have not written in a while. That and my addiction to Candy Crush.
But seriously, what is going on lately? I am not going to mention names but I have friends, former co-workers, and family members who have lost loved ones (parents, spouses siblings, even young children) tragically, suddenly, or from illness. I have a friend whose child is fighting Leukemia. It is not fair that people should have to go through such tragic events.
When awful things happen to people around you, it really makes you think about what would happen if it were you going through this? You certainly can't look at it like its something that happens to other people. But inevitably it makes you cherish what you have a bit more. To make sure we make the most of every single day because we never know what will happen tomorrow. To say I love you to your family over and over again.
My mom told me that the nuns at Catholic School would say something to the effect of "You better kiss your mom goodbye every morning because you might not see her again" A bit guilt trip-ish but actually quite true.
If my family stays healthy and is spared from tragedy, I really do not care if my vision sucks. Its nothing in the scheme of things.
For my friends who are going through hard times, please know that you are in my thoughts.
I will post again soon but now its time for bed! Good Night all.