by Steven Goldberg, O.D.
January 30, 1998
There’s nothing to prevent anyone from simply calling themselves a “low vision specialist”, but there are a few things you can do to point yourself in the right direction.
There is a Low Vision Section of the American Optometric Association – you can contact them at 1-800-365-2219. I’m sure they will be glad to provide names and numbers of doctors in your area. Membership in this group does not ensure that the doctor is a full-time low vision practitioner, but it does indicate that he or she is particularly interested in this field and presumably is keeping up-to-date with current developments.
Another source might be your current eye doctor. He or she should know of some of the better people locally involved in low vision care. You might also have a local optometric or medical society that may be contacted for such referrals. Just be sure to note that you are looking specifically for low vision help, not just a general eye evaluation.
When you do locate one or more low vision doctors, don’t hesitate to ask them (call on the phone if you like) about their background in low vision and if they do indeed specialize in this area. Ask them what you can expect from a visit (don’t be shy about also inquiring about fees).
Each examination/evaluation will be a bit different, but in general, at the initial visit the doctor is likely to review your ocular and medical history (if he/she can obtain copies of recent eye examinations ahead of time this is helpful). The doctor will want to make sure that your current eyeglasses are up-to-date. He or she will also want to make sure that any complicating conditions such as diabetes or glaucoma are being adequately cared for. If there is some doubt about an accurate diagnosis, special tests may be run or you may be asked to return to your original doctor for some of these tests. Once it is clear just what the ocular status is, then decisions can be made about how best to proceed.
It is important to note that every single person can be assisted in some manner, if they wish to be. I never, ever tell a patient that “nothing can be done”. Any time you hear this, disregard it. This doesn’t mean that lost vision can be restored, but it does mean that some level of independence, however small, can still be obtained. Even if I have someone totally blind (no light perception at all), I can still offer the free books-on-tape program provided by the government and I can suggest various reading machines that scan in text and convert it to speech.
In many cases, what I have to offer is not of interest to the patient, but at least it is their choice to make. Always realize that there are options available, from various magnifiers to large-print objects to talking devices, and more. If the low vision specialist you see can not discuss these with you, it is time to find someone else.
Expect to spend some time, over multiple visits, with your low vision specialist. It can take time trying to decide what low vision aids, if any, will be suitable for your needs. It is equally important to learn how to properly use these aids. The best device in the world is useless if you can’t operate it properly. Low vision care in many ways is really considered part of rehabilitative medicine and the teaching/learning part is crucial to success. I have had many patients who have been disappointed in their aids because they either were not instructed properly in their use, or had unrealistic expectations.
I can’t stress enough that we cannot replace lost vision in most cases, but we can maximize what vision remains. I have many patients who are unable to read the large “E” at the top of the eye chart, yet with sufficient magnification are able to read large-print books and magazines. However, this kind of reading can be slow and difficult. It may mean only reading one or two words at a time. It may mean taking a break every few paragraphs. It is not easy, but with effort, many people are able to read their mail and read large-print books and magazines (and maybe regular books and magazines), thereby maintaining a fair degree of independence. This is not always possible, but a thorough low vision evaluation should fairly quickly identify what is realistic and what is not. The important thing to remember is that you CAN be helped, to some extent or another.
I’ll also point out in passing that of the five or six thousand patients our office sees each year (nearly all geriatric patients in nursing facilities), only a very small number (less than a dozen or so) are totally blind. In almost all cases we see there is some vision that remains. Macular degeneration by itself will not lead to total blindness. Other complicating conditions may possibly lead to this (i.e. severe stroke or trauma, untreated glaucoma, etc.), but my experience is that few people experience total visual loss.
Remember also that tremendous research is on-going. I am confident that coming years will bring major advances in the treatment or prevention of macular degeneration. Whether this comes from genetic work, medical or surgical treatment, or some type of advanced biotechnology, only time will tell. In the meantime, finding a qualified low vision specialist you are comfortable with is a step in the right direction.