Macular Degeneration and Me

Low Vision and High Hope


Who’s on your low vision care team?  Do you have a team?  Or do you just pick a doctor out of the phone book or ask a friend?  Over time I’ve developed a team to cover all aspects of my low vision problems that I would like to share with you now.  I’ve added team members and I’ve changed members based on a better or updated understanding of their services, experiences and customer service practices.

Here are some of my tips and ideas for creating a Super Care Team.  Before any selection I put together what I call My ‘DO’ List:  Do treat me with respect; Do treat me intelligently; Do listen to me and my point of view; Do talk to me and communicate what you are doing and why; Do wash your hands and clean your equipment; Do remember that I have low vision when you show me pictures or charts; Do keep my chart private; Do know about research and advances in my disease; Do understand and encourage questions; Do care about me as an individual.   BE PRO-ACTIVE: Create your own DO List.  It will give you direction and confidence.

Now it’s time to meet my team. First up, my husband.  Bob and I consider a family member or very close friend who goes to all your appointments as the most important member of the team.  We agree that the same person go with you each time; not just someone who drives you to the appointment and waits outside.  This person needs to go with you into the examining room, watch the tests, ask questions and take notes if possible.  Once your eyes dilate it’s hard to see and notice your surroundings.  For the past 10 years Bob has accompanied me to my vision appointments.  About a year ago during the eye test he noticed that the vision in my right eye had changed for the better. I had not realized that I could see the entire line without impediment.  This was a change for the better and a great confidence-builder.  Bob also listens to what goes on outside the examining room too.  While I’m busy with my ocular scan, he listens and watches what else might be happening.  When I think about Bob’s commitment to support me in this way, I realize it’s done wonders for lowering my stress level.  Thanks Bob.

Choosing the right ophthalmologist is essential to your care.  An ophthalmologist is a medical doctor (MD or DO) specializing in eye and vision care and trained to provide the full spectrum of eye care including treating eye diseases and surgery of the eye.  I believe it is important for my ophthalmologist to specialize in retina diseases so I looked for Board Certified Ophthalmologists with Fellowships in Retina and Vitreous specialties.  Additionally, I also wanted someone who was up-to-speed on research and advances in the retina field so I also looked for a doctor who had completed a research fellowship and involved in current research.

My current doctor meets all my criteria and fulfills my DO List as well. Remember you can also tell the doctor by  the technicians and other staff who work with you.  The technicians that work with me are knowledgeable, well-trained and friendly.

Doctors of Optometry (ODs or Optometrists) are health care professionals who examine, treat and manage diseases of the visual system.  They also identify related systemic conditions of the eye. Eighteen years ago an optometrist noted a major change in my eyes and sent me to an ophthalmologist who diagnosed macular degeneration.  I’ve worked with my current OD for seven or eight years.  He is knowledgeable, skilled in his assessments and has the rare ability to explain things clearly to a layperson.  I’ve learned much from him including trusting my ‘gut feelings.’

Low Vision Rehabilitation Specialists are ophthalmologists or optometrists who specialize in the evaluation and management of low vision rehabilitation. They help people like me  enhance remaining vision with special low vision  eyeglasses and other low vision aids, like magnifiers and telescopic devices.  They work in conjunction with your ophthalmologist.  My visit to the low vision specialist at NABA was life-changing. She taught me how to use lighting to my benefit, fit me with new low vision lenses and gave me a real sense of hope.  She also recommended that I ask for a referral to an occupational therapist to learn a technique called Eccentric Viewing Technique.  Again, a life-changing day.

Occupational Therapists work as part of the team and offer low vision evaluations, evaluate daily living activity and the ability to cope and access community resources.  My therapist also teaches EVT (Eccentric Viewing Technique).  I highly recommend adding an occupational therapist to your care team.  The evaluation on daily living activity was incredibly helpful – now I know what I can’t see – plus she came to my house and evaluated areas for safety improvement and ease of living.  It is hard to describe how much this therapy did for my self-worth, my stress level and my overall  enjoyment.  We had fun, I learned so much and believe that her encouragement gave me the boost to go ahead with this blog site.

Who else should be on your care team?  I would add family and friends, those closest to you, who love you.  I put together a short letter that I send periodically to family and friends updating them on my vision status.  I also speak honestly and openly about what I can and can’t see.  It helps people realize not just my limitations, but my opportunities.

To my Super Care Team – you are my champions.  Thanks you.



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