Macular Degeneration and Me

Low Vision and High Hope

MORE ABOUT LIVING WITH MACULAR DEGENERATION

There have been a lot of changes in the last three years since my diagnosis of WET macular degeneration in my left eye.  The first thing that happened was the blurred and wavy vision and the problem caused by glare or inclement weather prevented me from driving at night.  This was a major change in my life because I had to rely on others to go anywhere.  Now everything had to be planned.

I was also dealing with monthly eye injections that left me washed out for an entire day.  (another story another time) On top of that the injections weren’t working.  For almost two years I received a monthly injection.  Sometimes I had better vision for a week or two but then it was back to square one.  Very frustrating.

I revved up my research into the disease, finding out as much about it as I could.  I heard about a Low Vision Fair held by NABA (Northeast Association for the Blind)  in the Albany, NY area.  That was my lucky day.  There were many approved vendors of low vision products in attendance, seminars, staff to answer questions and a very upbeat attitude from all.  I discovered lighted magnifying aids and purchased one that I still use today.  I saw computer aids, readers, specialty glasses and realized there were many ways to extend my vision for many years to come.

During the winter of 2009 I realized that although my right eye was doing well it was uncomfortable for me to drive during inclement weather – a squall, rain, icy conditions necessitated pulling off the road.  So daytime driving in the winter ended and I had more time on my hands to think about my life and what I would do with it.

It was then I noted that I was having lots of trouble reading things on the computer, couldn’t find on and off switches, couldn’t see the thermostat, put on make-up and the worst thing of all was that I could only identify my birds by shape recognition.  There was no getting around it – my vision was on the decline.

Fast-forward to April 2010.  I was sitting in the ophthalmologist’s office waiting for them to freeze my eye for yet another injection when I realized I was just one of a long line of older people lining up for this type of care.  Not only that, but my ophthalmologist wasn’t communicating anymore, just dealing out injections.  No hello, no how are you…..nothing.

That was the day I took my life back.  I made a lot of changes:  new ophthalmologist, more research and study, replaced worry with activity, talked to my family for support and reassurance and decided to have a low vision exam by a specialist as suggested by NABA.

Now it gets a little more interesting.  My new eye guy (ophthalmologist AND researcher) disagrees with the diagnosis of WET macular degeneration in my left eye. After an Ocular Scan in December 2010 he diagnoses a Macular Pucker – I bet you didn’t see that coming.  Neither did I.  Simply put a macular pucker is scar tissue that has formed over the macula distorting and bluffing vision – similar symptoms as mac degen.  Although both happen in the macula they are different.  There is an operation to peel the scar tissue from the macula.  Now I have to decide whether to have this operation.  Interesting to note that I may still have WET mac degen but there’s no way to tell unless I have the operation.  I start more research and study.  Laughing helps too.

I move forward with my plan for a low vision exam at the NABA office.  There I met an optometrist who has added certification in low vision.  She changes my prescription for glasses, teaches me about the benefit of good lighting and suggests I look into Eccentric Viewing Technique.  Again I feel a shift in my perceptions, my attitude, my self-esteem.  Life starts to feel good again.

I requested a referral to Sunnyview Rehabilitation Hospital to be evaluated for Eccentric Viewing.  Another life changing day.  My Occupational Therapist walks me through a lengthy list of questions about what I can see and what I have trouble with.  This is the first time I’ve ever had to consider these things and it was very therapeutic.  I now had a list of what I can’t see very well.  I qualified for the training on using my peripheral vision to read and began a five-week course.  I have homework and practice every day.  The therapist also taught me safety in the home as well as when I’m out and about

Although I retired from a lovely career in training and customer service consulting and loved my volunteer life I felt the need for more.  I decided I could write about some of the organizations and people I know who are making the world a better place.  With the love and help from my youngest sister I made my way through the technical maze and launched my A Noble Purpose blog on my birthday in March.

Several people suggested I write about my experiences with mac degen so now I’ve launched this second website in hopes of helping others navigate this difficult time.  BE PRO-ACTIVE:  DO SOMETHING!  DON’T JUST THINK ABOUT IT.

Up Next?  Light Up Your Life

Special Note:  definitions can be found in the Definition Page on the left sidebar.

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2 thoughts on “MORE ABOUT LIVING WITH MACULAR DEGENERATION

  1. Shelly on said:

    I would like to thank you for all your information, I have been diagnosed with dry Mac degen im 43 yrs old. i still see good but knowing i will eventually not see has got me tied in knots the unknown is the worst feeling I really appreciate reading your story and it has helped me understand more of what choices are out there and to have more tests done to make sure

    Thank you

    Shelly

  2. shelly – thank you for your kind words. Remember you are not alone. Check my posts ever week or so and stay in touch. There’s high hope out there.

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