by Dan Roberts
Updated September 2018
One of the most common problems encountered by people who are first diagnosed with macular degeneration is what to ask the doctor. The news usually takes us by surprise, and we may have never even heard of the disease before.
To compound our confusion, many doctors do not have the time to educate us about all of the aspects of our condition. It is, therefore, our responsibility to learn as much as possible so that we can ask specific questions.
Good doctors are busy. They cannot afford to spend an inordinate amount of time with us, but they will take the time to answer our questions if we are well-prepared and concise. That is the purpose of this page. It will first explain the basics to you (be sure to bookmark this page before following the links), and then you can print it out and take it to your next appointment.
Do not expect your doctor to provide a great deal of emotional support. Instead, expect a courteous professional who knows how to take care of your physical needs and who is familiar enough with the resources to direct you to other information which you may require.
Above all, no matter what answers you hear, remain positive. Most things will never be as good as you hope, but neither will most things be as bad you think.
Here are some excellent questions for your doctor suggested by the National Eye Institute:
About My Disease or Disorder…
- What is my diagnosis?
- What caused my condition?
- Can my condition be treated?
- How will this condition affect my vision now and in the future?
- Should I watch for any particular symptoms and notify you if they occur?
- Should I make any lifestyle changes?
About My Treatment…
- What is the treatment for my condition?
- When will the treatment start, and how long will it last?
- What are the benefits of this treatment, and how successful is it?
- What are the risks and side effects associated with this treatment?
- Are there foods, drugs, or activities I should avoid while I’m on this treatment?
- If my treatment includes taking a medication, what should I do if I miss a dose?
- Are other treatments available?
About My Tests…
- What kinds of tests will I have?
- What do you expect to find out from these tests?
- When will I know the results?
- Do I have to do anything special to prepare for any of the tests?
- Do these tests have any side effects or risks?
- Will I need more tests later?
Understanding your doctor’s responses is essential to good communication.
Here are a few more tips:
- If you don’t understand your doctor’s responses, ask questions until you do understand.
- Take notes, or get a friend or family member to take notes for you. Or, bring a tape-recorder to assist in your recollection of the discussion.
- Ask your doctor to write down his or her instructions to you.
- Ask your doctor for printed material about your condition.
- If you still have trouble understanding your doctor’s answers, ask where you can go for more information.
- Other members of your health care team, such as nurses and pharmacists, can be good sources of information. Talk to them, too.
Questions Your Doctor Cannot Answer
Will I lose all of my central vision?
Each person is different as to how long it takes for the cells to degenerate. Macular degeneration is a progressive disease, but stabilization for months or years can drastically slow down its progression. Therefore, complete loss of central vision could take anywhere from months (in some wet macular degeneration cases with no treatment) to years, or degeneration may never reach its full potential if your life span is shorter than the course of the disease.
When are they going to find a cure?
There is a great deal of research going on in many areas, and there is reason to hope for a cure within the next decade. Any more accurate prediction than that is purely guesswork. The best you can do right now is to practice good nutritional habits, avoid pollution and smoking, protect your eyes from ultraviolet rays, and stay informed about possible treatments. Then, when the cure does come, you will have done the best you can to take advantage of it.