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Tuesday, June 25, 2013

Did you know I was famous? :)

When I was 16 the Middlesex News ran an article about me and my participation in the Schepens Eye Research Institute's Swim for Sight.

Just thought I would share it.   I am attempting to use Dropbox... hopefully it will work!

Swimming toward a cure 1991

Saturday, June 22, 2013

A bit about Stargardts and how I see...

Apparently the song I posted last night would not play.  I will check it out and try to repost it sometime soon.

I thought I would post some information about the visual impairment that I have.
I obtained all of this via the Foundation Fighting Blindness website.
The site is a great source of information about many retinal degenerative diseases. 
Foundation Fighting Blindness


Stargardt disease is the most common form of inherited juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

The retina is the delicate light-sensing tissue lining the back inside wall of the eye. Photoreceptor cells in the retina provide vision by conveying information from the visual field to the brain. The macula is responsible for sharp central vision — for tasks like reading, watching television, and looking at faces.

Decreased central vision is a hallmark of Stargardt disease. Side vision is usually preserved. Stargardt disease typically develops during childhood and adolescence. Also involved in Stargardt disease is a region beneath the macula called the retinal pigment epithelium.

What are the symptoms?

The symptom that brings most people to an eye doctor is a change in central vision. A doctor looking at the retina of a person with Stargardt disease will see characteristic yellowish flecks in and under the macula. The flecks might extend outward in a ring-like fashion.

The flecks are deposits of lipofuscin, a fatty byproduct of normal cell activity. In Stargardt disease, lipofuscin accumulates abnormally. The Foundation Fighting Blindness supports research studying lipofuscin build up and ways to prevent it.

A decrease in color perception also occurs in Stargardt disease. This is because photoreceptor cells involved in color perception are concentrated in the macula.

How quickly does vision fade?

The progression of symptoms in Stargardt disease is variable. Visual acuity (the ability to distinguish details and shape) may decrease slowly at first, accelerate, and then level off.

A study of 95 people with Stargardt disease showed that once a visual acuity of 20/40 is reached, there is often rapid progression of additional vision loss until it reaches 20/200. (Normal vision is 20/20. A person with 20/40 vision sees at 20 feet what someone with normal vision sees at 40 feet.)

By age 50, approximately 50 percent of people in the study had visual acuities of 20/200 or worse.
Eventually, almost everyone with Stargardt disease has a visual acuity in the range of 20/200 to 20/400. The vision loss is not correctable with prescription eyeglasses, contact lenses, or refractive surgery.


That last line is the kicker isn't it?  With so many amazing break through technologies out there these days it is hard to believe.

When people ask me how I see, I do not really have a great way to describe it.  It is hard when you do not know what it is like to see well.  But basically when I look straight at something, it disappears, so I automatically look to the side or above whatever I am looking at.
Hence the "Are you looking at me?" issue.

When I look at people I can see them but do not ask me to tell what color eyes they have unless I can get very close...or they have those bright shiny blues like my little Ayla!
I will not necessarily notice an eyebrow piercing/nose piercing.  If you have food stick in your teeth, I will not be the one to point it out...sorry :)

I actually love to read.
I read books on my ipad and have the font set as large as possible.   Forget about paperbacks or even regular hard cover books.  Large print books...Yes but usually with reading glasses.  I used to listen to audio books on my ipod nano...and I loved doing that.  But that was when I was commuting on the T.  I guess I could do it now and try to get some cleaning and stuff done while listening... But I like the sitting on the couch part too much.

When I watch TV, I wear my Max TV glasses which magnify the screen  (about 2X I believe.)  We have a 60 inch TV and even with these glasses, I do not see detail.  I can read the guide if I walk up to the TV.

I can see color but sometimes I do have some difficulty.  I seem to be able to match my kids clothes pretty well...so that's good.  But especially if I am looking at a small item I might not be able to identify the color. 

I think if I was suddenly able to see perfectly, I would probably get very sick due to the drastic change.  Honestly its hard for me to imagine.

Friday, June 21, 2013

My Song!

OK So last weekend, Chip's cousin Mike and his wife Beth came to visit.  Mike showed us the Songify app.  So cool!  I decided to make a song to go with the blog!

It is a short song made up 3 lines which are things people have said to me.

If you are visually impaired, I am sure you can relate.

I hope everyone can find the humor in this! :)

And I hope it works!

Are you looking at me

Sunday, June 16, 2013

Dad's day

I hope all the dads out there had a wonderful Father's Day today.  I thought maybe I would take a moment to describe some of the reasons why my dad is so special to me. 

First of all he is so much fun.  He has a great sense of humor (much like my own!)  We often call each other when we hear a new joke or have a funny story to tell.  

He drives my 4 year old daughter to school every day and seriously loves doing so.  He says it is the highlight of his day and I believe him.  They love their drives together looking for animals, spotting signs, taking new roads with funny names.  and chewing gum (lucky kid!)

Now this brings me to a point more relevant to this blog.  Both of my parents have had to help me out quite a bit with transportation throughout my life.  Neither of them ever make me feel bad or like a burden for this.  They go out of their way to help me (and others) in so many ways.
I remember in high school when I used to work till midnight and my dad would pick me up.  I was always hungry (which meant cranky was soon to follow)  and we would stop at the Burger King drive- thru for an "emergency burger." It didn't matter if he was exhausted...he would never let on that he was.

Parents of children with disabilities or special needs, definitely have to adjust in different ways than other parents do.  I know people who complain about having to drive a woile town away to pick up a family member; and it surprises me to hear these complaints because I never heard them from my family.

My brother was also always willing to drive me when he got his driver's license and had his cool old AMC Concord or Eagle or something.  He was 2 years ahead of me and would drive me to school even if it was just to drop me off on days that he was skipping! :)

Anyway, as a kid, my eye doctor appointments were obviously not fun and lasted the whole day.  I would see several doctors and there would be all sorts of tests.  One in particular would entail sitting in a dark room for a while with things that reminded me of suction cups in my eyes.  My mom and dad would stay in the room with me and talk to me and my dad would act silly and tell jokes to keep us all in "good" spirits.  They would sit in the room while I struggles to read the chart.  this was no doubt heart breaking for them...

My dad is the perfect combination of goofiness and professionalism.  When around kids, he is like a magnet.  He has a wonderful imagination and children gravitate to him.  Much like a jungle gym!
But I would guess that people he works with have no idea of this side of him because he had his business-like demeanor that naturally invites respect and admiration from others.

He has always been extremely supportive of me and is a voice of reason when I need one. His motto "Don't sweat the small stuff" sticks with me all the time even though I am not as good as following it.

I could go on and on but you get the point.  I am a lucky girl!

Love you Dad!

Wednesday, June 12, 2013

And I call myself a Bostonian?

I am probably one of the only people not watching the Bruins right now.  I did watch it for a few minutes...and my husband has it on in the other room so I am paying a little bit of attention.
Sorry...Hockey is a cool sport but I have never gotten really into it.
I bet you have no idea why?? :)
But strangely enough, while its hard to see what's going on in baseball as well...I do enjoy watching the Red Sox.  Go figure.

I think in general, its hard for me to watch such fast moving action and keep track of what's going on...never mind seeing the puck.  Baseball is slower visually and in every other way.

Its similar with movies.  Those crazy action films are not for me.  .I  much prefer a comedy, drama, psychological thriller.
I pass on silent films.  And those with subtitles?  Not so much.

While on this subject, I would like to mention that my very best friend in high school read all of the subtitles to me in when we saw Dances with Wolves (in the theater!)
If she reads this blog, I want to say thank you for that.  And for being an understanding, encouraging, caring friend.  

My husband is a huge Star Wars fanatic (not a geek...really!) and  I actually do enjoy those movies. 

Any movie I watch, I am bound to miss quite a but of the detail.  But I have always loved movies and the popcorn that goes along with it!

Oh one last thing...if you are visually impaired and enjoy watching TV...or would enjoy it better if you could see it, I highly recommend a pair of Max TVS.  Not a fashion statement but I love them!
http://www.activeforever.com/eschenbach-maxtv-glasses

OK maybe I will go show some support for the B'S!  Take care everyone!

Monday, June 10, 2013

Just a quick blurb while the kids watch Dora!

My family rocks!  A bunch of my relatives have read this blog and have commented on how much they love it and that they are proud of me for doing it.  I really appreciate all of their support.

My husband is impressed at how his wife has "gone international!" :) because I have had page views from all over the world including Venezuela, New Zealand, Spain, South Africa, Martinique, Japan...
I think that's pretty cool as well.

I would love to get more comments from some viewers who are also affected by Stargardts or other visual impairments.    I am interested in their perspective, challenges, hobbies,  stories, etc...

I continue to correspond (off the blog)  with Alanna who reached out to me last week and I feel like I have made a new friend.  I am grateful that I am able to help her in some way.

The unknown is a scary thing.  I have dealt with low vision for thirty years so it is just a part of my life.  But for someone who is facing vision loss as an adult it has to be unbelievable scary and frustrating.  It takes a lot of strength and support.  But as I have said in the past, life can still be fulfilling and happy.

Sunday, June 2, 2013

Thank you!

Thank you to everyone who has taken the time to view this blog.  And after posting a link on Facebook I was completely overwhelmed by the positive responses and support I received from friends and family.  My brother who is a writer and not easily impressed( :)) had amazing things to say about it and that made me feel great.  My sister-in-law texted me first thing this morning to say she loved it.  My mom, aunts and cousin shared the blog with their FB friends.
So a huge thank you to all of you. 

A good friend of mine mentioned that she has never heard me speak this intimately about the challenges I face,.  That is true.  It is not a subject I talk about very often because it is not the main focus of my life. It is something I have learned to deal with and as they say "It is what it is."
Lately, though, I have been feeling like there is more I can do to help others.  I used to be very active in fundraising for eye research..  As a child, I took part in the Schepend Eye Research Institute's Swim for Sight for several years and raised a good amount of money.  A few years ago I participated in the Foundation Fighting Blindness Vision Walk (in NYC one year and Boston another.)  I am planning on walking in the Boston Walk this fall as well.  I feel good when I do these fundraisers but I want to help people on a more personal level. 

I do not feel like you hear all that much about  retinal degenerative diseases unless you or a loved one are affected by one.  I have occasionally heard of someone who is legally blind and accomplished some amazing feat like climbing a mountain or completing a triathlon.  I can't say I have done any of those things.  Although I did go sky diving many years ago (tandem of course!) and I loved it! I am just a normal person (debatable) living my life, raising my kids, trying to keep my house organized, etc.   I have not done anything heroic but I do face challenges every day that many others face and can be scary....especially to those who have recently been diagnosed with a visual impairment.  

It seems like the general population sees it in black and white...either you are blind, you can see well or you wear glasses so that you can see well.  It seems hard for people to grasp that a visual impairment might not be curable.
Hopefully sometime in the future there will be a cure for retinal degenerative diseases.  I know that researches are working hard on it and there has been some encouraging advances lately.
Maybe when I am 75 years old my daughters will be teaching me how to drive a car!  hahaha

Anyway, thank you again for your support and please share this with friends who might be interested.
Take care,
Heather


p.s.  I can't seem to fix the text background color...sorry!

Saturday, June 1, 2013

Introduction

I have been thinking about doing this for a while and finally decided to try it out.  I want to share my experiences as an individual with Stargardts Disease (a retinal degenerative disease which causes blindness.)  I want to reach out to others who are affetced by visual or other types of disabilities. 

My name is Heather.  I am 39 years old.  I am married to a wonderful man and have two beautiful daughters.  I live in a suburb of Boston, Massachusetts.

I was 9 years old when I was diagnosed with Stargardts Disease.  It took a long time for my parents to obtain this diagnosis.  They went to eight doctors before finally meeting the incredible one who recognized the issue.
Now that I have kids, I think about what they must have been going through during this search for an answer and my heart aches for them.  When one of my kids has an ear infection or a rash, I feel awful and want to help them feel better as soon as possible.  I can;t even imaging how helpless my mother and father must have felt.

Throughout my life, they have been my biggest supporters and advocates.  To this day they help me all the time but never make me feel dependant...which I appreciate greatly.

I could go n and on but will save it for another time.  Right now I just want to introduce myself and my new blog. 
Oh and the title..."Are you looking at me?" - this is a silly choice but it is the most frequent question I have been asked and it drives me crazy.  So why not add some humor? 

I want to send the message out to folks who are affected by visual disabilities that you can do nearly anything you want to..except fly planes, etc.  Losing your vision is tough but it is not the end of the world (which I admit to have forgotten at times.)
I am so blessed to have the most unbelievable family in the world.  I am healthy.  I have the 2 cutest kids EVER and a lot to be thankful for. Life is good.




An invisible disability

One aspect of being legally blind that causes me to have internal debates with myself is this...to look at me you would not necessarily know that I have a visual impairment.  I call it an invisible disability.
 Sometimes I feel like it would be easier if I walked with a cane or a seeing eye dog even though I am not at that level of blindness to warrant such aids.(I wouldn't mind the dog though!)

I know that it surprises people when they see me struggling to see things.  Socially it is a  hindrance.  I often wonder if the people who are unaware of my low vision just think I am rude.  It is not uncommon for my husband to point out someone who is waving at me or smiling at me, so that I can wave back.  But how many of these friendly greetings do I miss? 
In high school and college how many chances to establish a friendship or relationship did I miss?  I certainly did not have any of those "eyes locking from across the room" romantic encounters!

I do not want to come across as feeling sorry for myself because I do not.  I am merely taking a moment to describe one of the challenges I face.  Do I tell people right away about my vision?  That way they do not think I am blowing them off if I do not say hello?  But on the other hand..my disability does not define me and I do not want to bring it up every time I meet someone new.

I just got home from dinner with two of my best friends who I have known for over 20 years.  Both of them tell me they forget about my  visual impairment and that in all the time they have known me they have not noticed that I do not make eye contact well.  I was glad to hear this.    It shows I have been living my life and not letting my vision pull me down.