Working with Your Care Team
Once you have chosen members of your care team how can you best interact with them? You and your team want the same thing: They want to give you the best possible care they can and you want to receive the best care available. Why then do so many persons with PD not get the best possible care available? One reason is that communication between patient and care team breaks down. Here is how to keep those communication lines open and working?
For every visit to a health professional try to have the following information written down so that you can hand it over to the secretary instead of having to repeat it ad infinitum:
- Your name
- Address and phone number
- Insurance information and member number
- Date of birth; social security number
- Current medications, prescribed or over the counter, dose, and purpose
- Known allergies or adverse reactions to medications or common medical equipment (example: latex gloves)
- Current health problems and dates of onset
Once you are in the doctor’s office be prepared with any questions you might have. Don’t just say your fine when the doctor asks you how you are? Give some details about symptoms. What they feel like, when do they occur, when are they relieved etc Take someone with you to your appointments with the neurologist so that he or she can remember what you miss. Never leave an appointment without a clear idea of what comes next. Do you need to take a medication? If so how much of it and when? What are possible side effects of that medicine? Will you be able to drive normally? Do you need to see another specialist or have more tests? What are the tests and what is involved with each test? How quickly will results be available?
When you go to see an allied health professional like a physical therapist or speech therapist you should ask for clear explanations of the treatment you will undergo. What is it? What is it designed to do? How will I know that it is working? What is the cost and will this be covered by my insurance? When will I see results of the treatment if it works? What are the alternatives to this treatment plan?
General Strategies for Getting the Most out of Your Care Team
In general you want to be an active partner in your care. Try to resist adopting the role of passive patient who just follows orders of the doctors. Ask questions. But ask them in a cordial way in order to learn. Ask questions so that you can maximize the benefits of any treatment you undergo. Try also to avoid the opposite danger of asking too many questions and of taking over the role of doctor yourself. You will have to learn to accept the care of others. Let them do their job. Learn from them. Partner with them. If you can establish this kind of partnership with your care team you and your family will find it easier to cope with the all the challenges that PD will throw at you over the years.