Macular Degeneration and Me

Low Vision and High Hope

Twists and Turns

Sometimes I think all of life is really about twists and turns – never a path that goes from Point A to Point B – but a circuitous route that can challenge the most adventurous spirit.  And I’m not referring to a Robert Frost philosophical ‘road less traveled.’  I’m talking about those everyday things that happen – flat tire, no heat, bad weather, whatever, that you have to fix before you can do the thing you woke up to do in the first place.  Well that’s been my year.

As many of you know I decided to go forward with the vitrectomy to peel a macular pucker from my left eye.  A sensitive operation, sure, but not life-changing.  Even with known allergies to medications, I put myself in the hands of competent doctors and nurses on November 12, 2012 for the operation.  It went without a hitch or so it seemed.  I woke up with no pain and learned that three layers of membrane (scar tissue) had been removed from the macula.  I left the hospital and went home to recover for a few days.  My eye was a bit blurry but that was to be expected……and then came one of those twists and turns.

The blurriness in the left eye continued, and continued.  Seems there was unexplained swelling at the back of the eye.  First, we assumed it was from the peeling of all those layers of tissue but after three months there was no change.  I was on a prednisone-type drop four times a day and then eventually an injection of Avastin – still no change.

Twist and turn number two occurred when I found out that now a cataract was developing in the left eye – an always possible side effect from the operation.  Reading became quite difficult as did driving.  Since I didn’t drive much anyway, I gave up everything but local travel.

Throughout all of this time, I was experiencing severe stiffness and ongoing pain from my osteoarthritis.  Difficulty walking and doing simple chores around the house became a nightmare.

I could continue this story, twist by twist and turn by turn but you would soon tire of reading about this.  So, how am I now?

My arthritis is somewhat under control, aquatic therapy helped ease the pain, cataract surgery on the left eye went better than hoped for and I now read with that eye 20/70 without glasses.  I’ve learned that I don’t have to do everything TODAY, I can let others help me and I’ve learned the happiness that a small white dog can bring.

There have been some other things trying to divert me from the path, but I’m determined to just go with the flow and try to learn and enjoy what comes my way.

Next time I will explore the Ups and Downs that came along for the ride with Twist and Turns.

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All the Beauty of the World With or Without Vision

A few days I got a heartfelt comment from a woman who told her story of coming to terms with mac degen and her plans to make sure her life goes on and goes on in a very positive fashion.

She does go on to say that she will miss ‘seeing’ the beauty of the earth and photographing what she sees.  This reminded me of several people who have taken this challenge and turned it into some of the most beautiful and expressive photography I’ve ever seen.  Read on about two of my favorites:

The images from Lucent Imagery capture the life lived by someone who is legally blind – I love the notes that go with the pictures – makes it seem like I’m there with her.

And then there is this article about Peter Eckert, The Blind Photographer, who took up photography after he lost his vision to Retinitis Pigmentosa at age 28.  Explore his world and his award-winning photography.

There are many other photographers, both amateur and professional, who make sense of a no or low vision world through the lens of a camera.

Perhaps they see the beauty of the world though their mind’s eye. and we can all learn from that.

Note:  my iPad has given me the ability to capture things that happen around my life.  It’s easy to enlarge what I’m trying to photograph and there’s even a small telescopic lens and tripod, although I haven’t used those yet.

 

With Trepidation

Isn’t trepidation a pretty great word?  It covers so many emotions or fears.  For me, today, it means unease.  Unease with what the ophthalmologist will find at this check up.  Why am I uneasy?  Well for the past two or three weeks the vision in my left eye appears cloudy, not central blurriness as after the operation, but cloudy.  Hard to describe what I mean but I am concerned that perhaps I’ve developed a cataract (which is the only major side effect of my operation).

So it is with trepidation I head out for my appointment this afternoon.  Lots of questions run through my mind:  will I have to undergo more eye surgery so soon after the vitrectomy and what are the next set of side effects?  Luckily my husband had cataracts removed from both eyes with little or no problem.  But then he didn’t have other eye issues to deal with.

I do know I am quite uncomfortable driving even in what most people would think perfect weather.  I do know my vision has declined in the left eye.  I do know I’m spending a lot of time checking to be sure I don’t miss something.

And I also know you have to face unafraid what life brings you so for the rest of today, anyway, I will set aside my trepidations and just go find out what’s going on.  I’ll post results later today.

Can I See What You See?

For many years I’ve felt it incumbent to help people with better vision understand the vision limits those of us with mac degen experience.  Lately, however, I’m running into a phenomena where it is suggested that I try harder to see what someone else can see.  This is a bit disconcerting since if you don’t ‘try’ it looks like you don’t want to cooperate and if you do ‘try’ you just frustrate yourself.

First a simple fact:  we all see things differently: simple things such as weather, lighting, other obstructions or more difficult things as vision issues, medical problems, and , of course, our varying perspectives on life all impact what and how we each see.  Now having stated this, why don’t people remember this when I don’t see what they are pointing out ?

I think some of this can be directed to the popular electronic media – cell phones, tablets, computers, and so on.  The new graphics are incredible and the ability to upsize print documents is great.  But, for me, this just doesn’t work.  I have to study the page from varying directions if possible, move into better lighting or perhaps have someone point out a feature or an app – and this takes time.  Directing me to try harder takes my attention away from what I’m trying to ‘see’ and refocusing takes even more time.  If there’s glare or low light forget it!

And to top it off, the discovery that I really am not seeing some of the things I used to see makes me sad and a little bit angry.  As someone who is proud of her reading ability and attention to detail this is also embarrassing.  Of course, that’s my problem to deal with.

So what to do in these situations?  Do you have some thoughts about what you do?  I’d love to hear.

Meanwhile, I’m giving up the thought that I’d be the state’s major witness in the crime of the century and, from the witness chair, point dramatically to the perpetrator announcing “It was YOU.” Unfortunately pointing directly at someone is a vision skill I lost a long time ago!!

Some In’sights’ Into Low Vision Resources

What is a low vision specialist and what qualifications should that person have?  Where do I find one?  What do they do anyway?  Can that person teach me Eccentric Viewing Techniques?  These are just a few of the questions I’ve been asked about some of the resources I use.  Luckily one of my readers, Kaityln Cremer Smith, OTD, OTR/L, a low vision occupational therapist from southwest Florida gave me some great answers.

First let’s talk about Occupational Therapists who aid patients with low vision learn various adaptive skills to compensate their vision impairment.  This is part of their education requiring a masters degree and includes home adaptation and compensatory strategy training.  Things like walking down stairs safely, crossing the street, finding and identifying objects, home safety issues and a myriad of other great training.  OT’s work through the medical system and, generally speaking, most sessions are covered by insurance.

Since Eccentric Viewing is not part of the OT’s curriculum they must have further education to train others since it is quite complex, requiring the eyes and the brain to learn a new method of seeing, which means developing new habits and skills.  It is difficult to self-teach eccentric viewing, because it can be frustrating, and an experienced professional can help by offering new approaches when others may not be working.

Kaitlyn recommends (an I heartily agree) 1.be sure your Occupation Therapist graduated from an accredited school and 2. they have additional training in EVT.  I received my EVT training at Sunnyview Rehabilitation Hospital in Schenectady NY.  You can find these specialists by checking the yellow pages under ‘Rehabilitation Services’ – be sure to check out any you choose to be sure they are accredited.  For more information about EVT click HERE to read an earlier story.

Now let’s talk about Certified Low Vision Therapists (CVLT), generally an ophthalmologist or optometrist specializing in low vision.  These therapists generally work through not-for-profit organizations such as the Lighthouses or, in my case, through Northeast Association for the Blind at Albany (www.naba.org) and may not be covered by insurance but are usually made available free of charge for anyone who needs their help.

Through a low vision examination, these specialists can help decide if you need special low vision optical devices, better lighting, or other training to better use your functional vision.  NOTE:  Functional Vision is defined as a degree of vision sufficient to be of use in performing a given task, such as reading or sewing. 

To learn more about the Low Vision Examination click HERE

I have used both an OT with advanced training in Eccentric Viewing and had a Low Vision Exam.  These were two of the best things I did for support and assistance during my journey with mac degen.

Special Note:  from time-to-time I see ads for low vision aids such as binoculars, magnifying glasses, etc.  Just because a company carries these types of things, does NOT mean they have a CVLT or Low Vision Therapist on staff.  Make a call or send an email and check that you are speaking with a professional.

My special thanks to Kaitlyn and for the work she does with those of us with low vision.  Kaitlyn’s company, Low Vision Works, teaches a proprietary version of EVT.

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