Category Archives: The Experience of Vision Loss

Why You Should Seek a Low Vision Evaluation

Here is another excerpt from my book from the chapter titled: Acceptance-Adjustment-Adaption

The low vision evaluation is different from the medical eye examination that you receive from your optometrist or ophthalmologist.  The medical examination is focused primarily on evaluating the health of the visual system, concluding with a diagnosis and subsequent treatment, if needed.  The refraction, which determines the eyeglass prescription, is generally a part of that medical examination.  Your eye doctor wants you to leave the office with the best vision possible.

If your vision is not optimal, in other words, not “20/20’ with a new eyeglass prescription, additional testing will be done and a diagnosis determined.  The doctor next considers the appropriate treatment, either medication or surgery.  Sometimes there is no treatment, or the maximum treatment has been given, and there is no improvement in vision.  The doctor may say ‘nothing more can be done, see you in three months.”

Nothing more can be done!  This clinician may be brilliant within his/her scope of practice, but may not be aware of what the low vision specialist does, is too busy to concern himself, or may not be familiar with a referral network.  They may think the patient is too old or the vision loss is too severe.  I have heard of doctors, at the top of their profession, who send the patient out shopping for magnifiers.

This is where you need to be your own advocate.  Low vision services can be found in private practices (optometrists or ophthalmologists who also practice low vision), low vision multidisciplinary centers, and state or federal agencies.  Multidisciplinary low vision referral centers will have low vision specialists who work with occupational therapists, rehabilitation therapists, and counselors.

Low vision specialists are licensed optometrists or ophthalmologists, who understand the disease process and will have insight into the prognosis because of their medical training.  They are knowledgeable about functional vision loss and understand their limitations.  They have seen people with similar problems before, and will not think you are too old or too debilitated.  Their goal is to help maximize your visual potential, and help you through the adjustment and adaption process.

The low vision specialist evaluates the type of vision loss, whether it is a loss of visual acuity, visual field, or contrast sensitivity, and then evaluates what visual function remains. Their goal is not to treat the disease process in a medical sense, as with medications or surgery.  Medical treatment is still the domain of your regular eye doctor, with whom you should continue to see on a regular basis.

Here are the reasons to get a low vision evaluation;

  1. To Advocate for Yourself;
  2. Introduction to Visual Aids and Techniques;
  3. Education and Counseling, and
  4. Appropriate Referrals.

Thought for the Day: The beautiful thing about learning is that no one can take it away from you.   B.B.King

Adjusting to Vision Loss

The following is another exerpt from my book.


Adjustment is the psychological and social resetting of your life.  There are many factors that will affect how you adjust:  things like age of onset, rate and severity of disease progression, living situation, and financial concerns.

Coping is how we deal with the changes.  It is how we adjust and adapt  to the nuances of our psychological, social, and personal functional needs.  An individual’s coping mechanisms at the beginning of the disease are different from those at the various stages of the disease process.  Someone who loses vision suddenly will need to overcome the shock of sudden disability, while someone with a slow, progressive onset of vision loss may have years to adjust and develop compensatory techniques.  An individual with profound vision loss will need to work harder to compensate versus having to adapt to a milder vision impairment.  One’s living situation, whether living alone or in a family unit, can impact the capability to cope, depending on the situation, either positively or even negatively.  Sadly, financial resources can impact the capability to cope.  While state and federal agencies provide some valuable services, those extras like electronic technology, transportation, and home assistance may be financially out of reach.

There are several emotional issues that can affect one’s capability to cope with a disability;



Negative Self-Perception

Loss of Independence


It has been a busy season.  I have neglected to keep up with posting.  Whenever I have time to write, I have been working on a second book on Low Vision. For the next couple of weeks I will be posting topics from my book Insight into Low Vision.  This excerpt is from the chapter titled Interesting (Not Totally Understood) Phenomenon.


This phenomenon varies from a flash of light to moving patterns of light.  These lights appear randomly with no other visual associations.  It can occur in one eye or both eyes. They have been seen by those with retinitis pigmentosa , age-related macular degeneration, and Stargardt’s Disease.

Photopsia should be differentiated from light flashes associated with retinal detachment or traction on the retina.  These are both active processes that can be a sign of potential vision loss.  Photopic visual experiences, are thought to be residual neurological activity, as they occur in the area of retina which is already damaged.  This would be analogous to the phantom pain experienced by those who have lost a limb.

Vision Loss, Hallucinations, and Charles Bonnet Syndrome

The Charles Bonnet Syndrome is that visual hallucination event most commonly assumed to be the phenomenon experienced only by  those with low vision.

While the elderly are more likely to ex

Vladmir Kush art

perience CBS, there have been reported cases of children with CBS visual hallucinations. The problem with defining CBS is that individuals are not likely to report visual events for fear that they will be perceived as old and ‘losing it,’ or crazy and  in need of psychological help or medications.

Those who experience CBS hallucinations are those who:

  • have recent vision loss, not usually those with long term vision loss,
  • have lost the vision in both eyes, (20/100 or worse), and
  • are mentally alert, attentive, and understand the hallucinations are not real.

The elderly who experience eye diseases of old age most commonly experience CBS, especially those with age-related macular degeneration. CBS can occur for those with vision loss due to cataracts and diseases that affect the retina, such as  glaucoma, diabetic retinopathy, optic neuropathy, retinitis pigmentosa or any disease that causes vision loss due to damage along the visual pathway of the brain.

The hallucinations of Charles Bonnet Syndrome can be simple lines and patterns or complex with animals, people, scenery, and action. Sometimes they are cartoon like, small in size, or grotesque in appearance.  They are reported to be brilliant in imagery and blend into the surrounding  scenery. They may last a few fleeting seconds or may last for hours. These experiences are episodic and may continue for months to a year. They will eventually end. Those who have these visual experiences may find them disturbing, but do not usually describe them as horrifying or threatening. The images do not interact with them, they are merely observers. Studies indicate that those who live alone are more likely to experience the visual images of CBS.   The hallucinations may be triggered by sitting quietly or in bed when there is low light levels. It may also be related to fatigue or stress.

It is believed that visual hallucinations of the CBS are the result of the sudden vision loss due to  pathology somewhere along the visual system, which includes the eye, the neural connections, or the occipital cortex part of the brain at the back of the head. The visual hallucinations are analogous to the phantom pain experienced by an amputee. Phantom pain is pain felt in the area where the limb was before it was removed.  The brain is filling in the ‘blanks’ where there is no longer any stimulus. The eye doesn’t experience pain with vision loss, but experiences phantom vision. The nerves of the visual system are still firing, in the absence of stimulus, in the form of images. Hallucinations can be called phantom vision!

There are case reports of people, disturbed by the hallucinations, seeking medical help. There is no one direct treatment for these visual disturbances. Resolving the underlying condition of the vision loss will help, for example, cataract surgery for vision loss due to cataracts. Unfortunately, restoring vision is not usually possible.  Reports indicate people have used eye movement, eye closure, or lighting changes at the time to dispel the hallucination. Reducing isolation, vision rehabilitation, and the use of optical aids can help an individual redirect visual stimulation.