Help Your Doctor Help You

Communication Tips

If someone you know is experiencing any of the signs and symptoms of Creutzfeldt-Jakob disease (CJD), you may want to talk to their doctor about your concerns and observations.

A good relationship and clear communication with your doctor will result in the best care for your loved one. Here are some tips to help make talking to your doctor more effective:

Be prepared. Several days before your appointment, use these worksheets to help you track medical history, health changes, your concerns and current medications. When your appointment time comes, arrive early to fill out forms, bring two copies of your completed worksheets so you can go over it together and bring a pen and paper to jot down notes.
Speak up. Doctors tend to prioritize diagnostic information and core concerns early in the office visit. Mention your most important concerns early in the visit to be sure you have time to cover them. It might be helpful to use the list in the appointment worksheets.
Listen. Sometimes it feels like a doctors appointment is over in a blink of an eye and all you walk out with is the blurred memory of a meeting and a prescription. Take notes or bring a tape recorder and ask the doctor if she wouldn't mind your recording the visit to help you better remember the information you discuss.
Ask questions. Don't hesitate to ask for clarification if your doctor uses unfamiliar words or gives confusing instructions. Any recommendations you get need to fit your personal, cultural and financial situation so that you can put them into practice. Don't leave the office without understanding everything the doctor tells you.

For more tips, you can read the articles in the Talking with Your Doctor on the NIH Senior Health website.

Starter Questions You Might Ask Your Doctor

Here are some questions you might want to ask your doctor or nurse. Feel free to add your own questions.

Do you know what is wrong? How do you know?
What if it’s CJD? Where can I go for information, advice and resources?
Should I see a specialist?
Do I need a follow-up visit?
What tests do I need and why?
What do the tests involve?
Are there changes I should watch for?
When should I call you?

Because CJD is a rare disease, unfortunately most doctors will never see a person with prion disease, let alone have experience diagnosing or managing CJD. It may be helpful to: