When you have Parkinson's, you might realize that you have many members apart of your care team - from primary care physicians and neurological specialists, to dental, dermatological, eye professionals, and more. Keeping up with appointments alone can be hard, but keeping all of those helping to manage your care informed, is challenging too! Use these tips when working with the various members of your healthcare team. it will be important that you connect everyone and keep them abreast of all changes and updates, so keeping a journal dedicated to PD can be the most helpful tip. Consider these tips as well!
Plan ahead and take notes in between appointments: Include questions, concerns and new symptoms that arise, and new goals that you set, so that you are sure to not forget anything you want to discuss in the often-limited time you have with the provider.
Take a list of your current medications: Keep your updated list with you and take them to all of your doctor's appointments, including how and when you take them. You may even be encouraged to bring the original prescription bottles with you.
Try to request late morning appointments: For Parkinson's patients, this allows you to get your medications in your system so that you are functioning at your best. Morning appointments also mean reducing your chance of waiting in the waiting room for a long time compared to late afternoon appointments.
Be patient when asking questions between appointments: It could take a few days to hear back. Sometimes people don't allow enough time after they leave a message with a provider's office, calling back a few hours later saying, "I haven't heard back from my doctor yet" while he or she may have been in clinic all day. If you have not received a response within three days, try contacting the office again. Ask yourself whether your question you are asking is urgent or not. Can it wait until your next appointment? Would it be better suited to an in-person conversation? There is usually a contact number or online system for more urgent or timely questions, or depending on how urgent the situation is, you may be encouraged to go to your primary care doctor, an urgent care clinic, or even the emergency room.
Take your PD medications on time, as prescribed by your doctor on the day of your appointment: This optimizes your functioning and quality of life. To reduce your risk of running out of pills, do not wait until you are low on your medication supply before asking your doctor's office to send in a new prescription.
Call the clinic as soon as possible if you feel you need an appointment: Sometimes there is no availability for a few months, especially with neurologists or rehabilitation therapists. It is often helpful to schedule follow-up appointments when you check out.
If possible, take a support person with you to your appointments: You will be asked a number of questions and given a lot of information, so it can be helpful to have a second person there to assist if needed. The clinician will also likely appreciate hearing another perspective on how you have been doing.
Be candid about how you have been doing: Too often people respond with, "Oh, I'm fine" when asked how they are, but then the support person speaks up in disagreement or they call the office a few days later saying, "I forgot to mention all of these concerns I have been having." Similarly, be honest with your provider about whether you have been taking your medications on time, as prescribed, and keeping up with the rest of your plan of care and recommendations. Healthcare professionals can best assist you when they are aware of your actual functioning and concerns.
Advocate for yourself: Only you know how you have been feeling and what your priorities are. If you are bothered by your soft, low voice right now but the neurologist has not mentioned speech therapy, you can bring it up and ask for a referral.
Encourage the clinicians who address your PD to share their notes with one another: If you are seeing multiple clinicians within the same healthcare system, they may be able to read one another's notes, but this is not always the case. If you feel it would be beneficial to your multidisciplinary care to have your primary care doctor read your physical therapy notes, or for your psychiatrist to run a question regarding a medication by your neurologist, you should advocate for that. You may need to complete a medical release form before they can do so.
Find the right care: Choose providers with whom you feel you have good chemistry, and you trust to manage your symptoms over time. Try to find a healthcare team you feel understands and respects your concerns and goals. Know that you have the right to switch providers if you need another perspective or if your needs are not being met.
Source: Every Victory Counts, Davis Phinney Foundation for Parkinson's. Your Go-To Resource for Essential Information and Inspiration for Living Well with Parkinson's.