Questions to ask your doctor when you are first diagnosed with Parkinson’s disease

Questions to Ask Your Doctor About Parkinson’s Disease

Your doctor just told you that you have Parkinson’s disease (PD). You might feel sad, nervous, or terrified. You might be shocked, or maybe you’re not that surprised because you had a feeling the diagnosis would be PD. No matter what emotions you’re experiencing: there is a very good chance you have no idea what to do next. There are so many questions swirling in your mind, and you know that there are many more questions that would be helpful to ask, but you have not yet considered them yet.

Slow down and take a deep breath. Educating yourself about your new diagnosis is your first step. APDA has compiled a list of 10 questions to help guide conversations with your doctor. We have also provided some of our own answers to get you started, as well as links to APDA resources to give you more information.

The first appointment with a neurologist can be overwhelming. It can help to print out this list of questions and bring it with you to the appointment to make sure you cover the topics that are important to you. Be sure to add any of your own personal questions that may not be listed here. Additionally, you may want to bring a family member or friend who can listen, take some notes, and talk through the information with you afterwards.

10 Questions to Ask Your Doctor After Being Diagnosed Wwith Parkinson’s

Q. How do you know that I have Parkinson’s disease? Do I need to get any more testing?

A. Many people who receive a diagnosis of PD are surprised that the doctor made the diagnosis with seemingly very little objective testing. Some of the motor features of PD are unique to PD and easily observed by a neurologist who are trained in these assessments. Neurologists are therefore able diagnose many people in a very straightforward manner and further testing is not necessary.

However, not everyone’s diagnosis is as simple as that, and for those people, there are more objective tests that are available. DaTSCAN, as well as a test of cerebrospinal fluid and a skin biopsy test can give doctors more information about diagnosis.

Q. What caused my Parkinson’s disease?

A. Like many chronic diseases, the risk of developing PD is composed of a combination of that person’s genetic risk factors and environmental exposures. For most people, there is not one specific cause that can be blamed. This can be frustrating, but your energy is better spent looking forward and learning how to best navigate your new diagnosis.

Q. What should I look for in a Parkinson’s care team?

A. Over time, you will likely build a health care team to help best manage your symptoms and medications, and help you complete your treatment plan with other resources. Besides the motor symptoms of PD, which cause difficulty with movement, there are also many non-motor symptoms that can be very problematic for people with PD. These can include constipation, urinary difficulties, low blood pressure, and more. Your neurologist may refer you to another specialist to help manage these non-motor symptoms.

In addition, you may be referred to a physical therapist, occupational therapist, or speech therapist, among others, to work with you on maximizing your level of functioning.

Q. Am I going to be prescribed PD medications?

A. There are many medications available to treat the motor and non-motor symptoms of PD. The extent of your current symptoms will determine whether or not you need a medication now. Your medication dosage and/or the types of medications you take will likely change over time and you’ll work together with your neurologist to adjust as needed.

Q. Do medications slow down PD?

A. Unfortunately, none of the current medications slow down the progression of PD. They are used only to treat symptoms. However, there are many clinical trials that are currently in progress to try to find a medication that is neuroprotective and will slow down the progression of the disease. APDA is funding research that aims to halt PD pathology at its inception. Alpha synuclein is the protein that abnormally aggregates in PD. APDA-funded researcher Dr. Sunil Kumar has identified the sections of alpha-synuclein that are necessary for the aggregation to take place. He is currently developing molecules that can bind to these sections, and which could potentially slow down the pathological processes that lead to PD.

Q. Is exercise important? If so, when should I start? What kind of exercise should I do?

A. Yes! Exercise is vital for people with PD. In consultation with your doctors, you should start an exercise program as soon as you are able. Here are the benefits and what types of exercise are best for people with PD.  There are exercise classes and programs for people of all abilities, so even if you have mobility issues or if you’ve never exercised before: there is some form of exercise that can work for you. APDA’s Virtual Events Calendar is a great place to find a wide variety of exercise and movement classes you can do from anywhere. Our APDA Chapters and Information & Referral Centers can connect you with in-person exercise classes as well.

Q. Is diet important? If so, what should I eat or avoid eating?

A. Yes! In addition to exercise, diet is a major influence on your health that is under your control. The MIND and Mediterranean diets have been shown to be brain-healthy and are great options for people with PD. Vegetables, whole grains, legumes, olive oil, and low-fat proteins like fish and poultry are among the recommended foods.

Q. Are my children or siblings at risk of developing PD?

A. Overall, your first-degree relatives, which include your siblings and children, have about a 4% chance of developing PD. Someone without a family history of PD has about a 1% chance. However, these risk calculations will change depending on any genetic risk factors that are specific to you. You can further discuss genetic testing with your neurologist to learn more about your genetic risk factors.

Q. How fast will my disease progress?

A. Typically, PD progresses slowly over decades. Beyond that, it is very difficult to predict the progression patterns of any individual. However, here are some generalizations about disease progression that you may find helpful. Taking good care of yourself with a nutritious diet, exercise, a good support network, and healthcare team are just a few of the things you can proactively do to help make your PD journey as smooth as possible.

Q. Do you know of other individuals with Parkinson’s whom I can talk to?

A. There are many PD support groups that meet in-person and/or virtually across the country. We highly recommend you get connected with a support group as soon as you can. The right support group will help educate and support you, and you can find tremendous benefit in the knowledge shared among others who are going through the same thing. (Note: you might have to test out one or two support groups before you find the one that feels right to you.)  Your doctor may be able to connect you to other people who have been newly diagnosed. APDA can help you find a support group in your area. There are additional ways to get connected. For example: through the online community Smart Patients. Check out this episode of Dr. Gilbert Hosts featuring people who have lived for decades with PD to give you an idea of how helpful the advice, tips and tricks from those who are living with PD can be.

Tips and Takeaways

  • When you are first diagnosed, you may not even know what questions to ask. The list above is a helpful guide that you can bring to your next medical appointment and talk through with your doctor.
  • Knowledge is power – take a look at APDA’s library of helpful publications that can help you better understand your disease.
  • You can use APDA’s Ask the Doctor portal to get additional questions answered.

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