Macular Degeneration; How Do We Cope?

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Macular Degeneration; How Do We Cope?

How do patients cope with severe vision loss from macular degeneration?

I see patients that have lost vision from macular degeneration; wet macular degeneration and dry macular degeneration.

Wet Macular Degeneration. The most severe form of macular degeneration is the wet form.  Abnormal blood vessels, aka choroidal neovascularization, develop within in the layers of the retina/macula.  These vessels destroy normal macular tissue and proceed rapidly to destroy central vision.

Geographic Atrophy. The most severe lesion or form of the dry form of macular degeneration.  There is no neovascularization.  In this case, the middle layer of the retina, called the RPE degenerates.  The result is the same.  Severe loss of central vision.  Geographic atrophy does not develop suddenly.  It can take years or even decades to progress.

In either case, many of patients today will be “suffering” severe vision loss due to macular degeneration.  How do we cope?

I am a psychologist.  Though a “retina specialist,” I function often as a therapist, helping patients and their families, cope with loss of vision.  It often is not easy.  Remember, this is a disease that affects older individuals and I have to inject “hope” into situations that seem hopeless.

What is Lost? Loss of vision means loss of independence.  Most people like to read, watch TV and drive.  Frequently all 3 are wiped out.  I believe the hardest issue to deal with psychologically is losing the ability to drive.  Now, patients must depend upon others.  It is tough for many accept.

“Glass is half full.” For many, only one eye may be involved.  The other eye may continue to function normally.  It is usually reassuring to patients to hear that driving a car in most states requires one eye (not true if you have a CDL license). In no case does macular degeneration cause complete blindness.

Peripheral vision is almost always normal in macular degeneration; dry or wet.  Macular degeneration may lead to “legal blindness,” but not complete blindness.  Most are able to function without a problem.  Activities of daily living; cooking, brushing teeth, writing checks may need to be relearned or can be completed with certain visual aids/tools.

On Low Vision. Visual aids or tools are also known as low vision aids.  In my experience, low vision aids are NOT a thicker pair of glasses.  These are aids, or tools, and one must learn how to use them.  I have found, that unless a patient is motivated to relearn a task, say writing a check or reading with use of a computer, there is no reason for low vision therapy.  It is too likely that the patient is simply going to fail…………….yet another obstacle.  No reason to beat a man when he is down.

Patient’s Perspective. Low vision therapy is usually introduced at a time when the shock losing functional vision has been better accepted.  If accepted, the patient may approach relearning with a more optimistic attitude.  Their perspective is important.

Many times, too, I’ll stage the “message” over several visits, giving my patient time to absorb and understand.

“Randy”

Randall V. Wong, M.D.
www.TotalRetina.com
Ophthalmologist, Retina Specialist

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Comments
  • Ed Mixon November 11, 2009 at 4:04 pm

    Dr. Wong:
    I just read the above message re: coping with Macular Degeneration. In the last sentence you mention that often you will stage the message giving the patient time to understand and absorb the situation. When I last saw you (in Dr. Dressler’s office) I was told I had significant scaring on my retina and told to come back in six months. Dare I ask; Do I have MD and are you giving me time to understand and absorb?
    Ed Mixon

    • Randall V. Wong, M.D. November 12, 2009 at 5:42 am

      EM,

      You are right, sometimes I do “stage” messages. Usually, I find this wise when there is little understanding of the whole picture.

      How about emailing me or calling me at the office?

      r

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