Self Advocacy: How to Create a Parkinson’s Care Team from Providers Who Are Not Parkinson’s Experts

care team How to Communicate OFF times - Davis Phinney Foundation

Having a strong care team that understands the nuances of Parkinson’s is a critical part of living well with Parkinson’s. Sometimes, however, you may have an appointment with a healthcare professional who is not a Parkinson’s expert. This is common during unplanned hospital visits, but you may have other health needs for which you’ll receive care from someone who isn’t knowledgeable about Parkinson’s.

When you will be meeting with a care provider who is not a Parkinson’s specialist, there are some things you’ll want to keep in mind before, during, and after your visit, which can help you get the most out of the visit.

5 Ways to Prepare for Your Appointments

Much of what you can do to make the most of your appointments happens before you even get to the provider’s office. Here are five important considerations about scheduling appointments with care providers who may be less knowledgeable about Parkinson’s:

#1 – Ask for Provider Recommendations to Minimize Complications

If you need or want to see a new provider, sometimes a care team member will offer you a referral; however, don’t assume that the person you are referred to is knowledgeable about Parkinson’s. Be sure to ask the person making the referral if they are making the recommendation for a reason particular to your situation.

When you ask about the reason for a specific referral, remember that some care providers know each other well and have established strong working relationships. Seeing a new provider with a strong relationship with another member of your care team may be more valuable than seeing a provider who is more knowledgeable about Parkinson’s.

If you are making an appointment for yourself and are not receiving a formal referral, you should call your neurologist and ask if there is a provider they recommend for the care you need. You can also check with a local chapter of a Parkinson’s support organization or other people with Parkinson’s in the area.

#2 – Inform the Scheduler That You Are Living with Parkinson’s

When you contact a provider’s office to make an appointment, ensure the office staff knows you are living with Parkinson’s. This communication is essential when scheduling with a provider you have never seen before because sharing this information may help the office staff confirm that you are being scheduled with the most appropriate provider in the office. Keep in mind, however, that if a member of your care team referred you to a specific provider, ideally, you’ll make the appointment with the individual who was recommended to you.

Another reason to inform the scheduler that you are living with Parkinson’s is that it might prompt the scheduler to ask you additional questions that can help your initial visit go more smoothly. For example, they might offer special assistance with new patient forms or accessing the facility, and they may have extended appointment windows available for people with more complex medical histories.

Additionally, it is a good idea to ask the scheduler if they can note your medications in your chart or appointment notes ahead of your visit so that the provider can prepare for your visit appropriately. For example, it is important to inform new dental providers of your medications if you take an MAO-B inhibitor because these medications are contraindicated for common dental anesthetics. While there are suitable anesthetic alternatives, the office may not always keep them on hand.

Finally, ask if you should come to your visit when you’re ON or OFF. This may be relevant for visits with physical therapists, ophthalmologists, optometrists, and dentists, where your medications can influence how assessable your symptoms are and what treatments can be provided. If you’re asked to attend your appointment when you’re OFF, which would be particularly troublesome for you, be sure to say so, and talk with your neurologist if you have concerns about this request.

#3 – Schedule Your Appointment at a Manageable Time

Another reason to inform staff that you have Parkinson’s is that it will allow you to explain the scheduling and transit limitations you might have. Sometimes, when a scheduler understands your circumstances, they can more easily find an optimal time for you, the care providers, and other office staff. Consider the following:

  • What date and time of day are best for you relative to your transportation needs?
  • What time would be best for you relative to your Parkinson’s symptoms?
  • What date and time would be best for your care partner?
  • Should you schedule for one of the first appointments of the day to have the highest chance that your appointment will be on time or schedule for the last appointment to ensure your visit isn’t cut short?

Of course, sometimes, the ideal scheduling situation isn’t possible. In that case, determine your highest priority need (bringing a care partner, being ON, etc.) and go from there.

#4 – Bring Someone with You

Whenever possible, go to appointments with a family member or friend. Having someone with you is especially important when interacting with providers who are less familiar with Parkinson’s because you may have to pay extra attention to make sure nothing relevant to Parkinson’s is overlooked.

#5 – Make Lists to Prioritize the Most Important Things

Consider what you want from your visit before your appointment. Consider what information you can share with your provider that could help reach this outcome and what questions you have. Record this information and bring it with you to the appointment. When you record this information, rank the items in order of importance. Appointments can be short and go by quickly, and you want to address your top concerns. Using our worksheets can help you organize your thoughts.

Additionally, while many care providers have access to the same electronic medical records systems, it is a good idea to bring a copy of your written history to ensure you won’t forget to include anything important. The central components you want to communicate to any provider you see are:

  • All significant diagnoses, including Parkinson’s
  • All medications and supplements you take
  • Any side effects you experience from the medications you take—although you and your neurologist may be very familiar with the common side effects of Parkinson’s medications, providers who are not familiar with Parkinson’s may not be
  • Any concerns you have about treatments, including interactions between medications
  • A list of care providers from whom you are receiving care
  • Any major surgeries or procedures you have had, whether they are directly related to Parkinson’s or not

5 Things to do At Your Appointment

There are many ways you can help your appointments go smoothly providers who are less familiar with Parkinson’s.

#1 – Be Kind and Take a Team-Building Approach

Kindness can go a long way. Even if your appointment started two hours late, you had to park very far away, and the stress has made your Parkinson’s symptoms worse, you are likely to find that being kind and personable with the provider and the office staff can help you have a better visit.

It may be true that “the squeaky wheel gets the grease,” but don’t forget that you and your care providers are a team. As a leader of that team, you should bear in mind that honesty, candor, and self-advocacy are best when paired with kindness and consideration of other people’s circumstances.

#2 – Listen Carefully

Another way you can be a good member of your care team is to listen carefully to the provider and other office staff and ask them questions as necessary.

Listening carefully is especially important with providers who are less familiar with Parkinson’s because you might hear something that indicates a gap in the provider’s understanding of Parkinson’s. Perhaps, for example, a physical therapist might recommend at-home stretches or activities that require you sit or lie on the ground and transition to standing positions quickly. You may know that you’ll have difficulty rising from this position or that you might experience neurogenic orthostatic hypotension (nOH), and it is important that the therapist understands these limitations. Asking questions or expressing concern in moments like this can help you have better outcomes and provide important information to the provider.

#3 – Ask the Questions You Planned to Ask

Because the appointment with a provider who is not familiar with Parkinson’s may be busy and you may learn new information, it can be easy to overlook the questions you planned to ask.

Before the appointment ends, consider whether you have addressed the issues you had hoped to address during the appointment. You might realize that you no longer need to ask some or all the questions you had planned to ask, but it is best to review your list and think carefully about this before you leave.

#4 – Double Check

Before you end your appointment or any significant treatment is undertaken, you should double-check with the care provider regarding whether any part of the plan might affect or be affected by your Parkinson’s symptoms and medications. Even if you have communicated your medications and medical history, it is good to double-check.

#5 – Make Sure You Receive the Resources You Need

Another thing to do before you leave the office after a visit with a provider who is not a Parkinson’s expert is to make sure you have the resources you need in the format that is best for you. Some offices will default to digital delivery of things like your homecare expectations, the name or address of another office you have to visit, or a listing of follow-up appointments. If their default method of communication is not best for you, be sure to ask if they have printed options. Or vice versa. This can be especially important for home-based exercises from physical therapists. Some people find it easier to manipulate a piece of paper to see their exercise list, while others prefer to have this resource digitally so they can access it on a computer or a phone.

2 Things to do After Your Visit

#1 – Take a Moment to Regroup

After you’ve met with a new provider, you may have to pay attention in ways you don’t have to after visiting your neurologist or another person specializing in Parkinson’s. You may also experience other sources of stress, so taking a few minutes to regroup before moving on to the next part of your day is a good idea. The goal is to make sure you have noted and will remember everything you want to remember from the visit. If it is most convenient, do this in the office waiting room or lobby before you leave. You don’t have to rush out of the building just because your appointment is over.

#2 – Close the Loop with Your Care Team

The most important thing you can do following your visit is to ensure that the details of the visit with the new provider are communicated to other relevant care team members. Doing so helps minimize future complications.

Generally, you should confirm that your primary care provider and your neurologist are informed of the results of your visits with any new providers. This may happen automatically if the providers have access to the same Electronic Medical Record systems, but you should ask a representative from all offices involved to confirm whether this is true. Another way to inform your care team of results from visits with new providers is to communicate via your patient portal. Often, you can send messages directly to your provider this way. Finally, you can call the office and ask them to add a note to your record, including the results you received from your new provider, to ensure the information is communicated.

Special Considerations for Primary Care Providers

Along with your neurologist or movement disorder specialist, your primary care doctor is one of the most important members of your care team. You are likely to interact with them more frequently than other providers, and because of this, you may have a higher interest in ensuring that they are well-informed about Parkinson’s.

Here are a few considerations about how to work with a primary care provider who is not a Parkinson’s expert.

  • Talk with your neurologist or movement disorder specialist to ask if they can forward relevant educational materials or other information to your primary care provider.
  • Ask your primary care provider the same questions you ask your movement disorder specialist. This may prompt them to do research and learn more about Parkinson’s.
  • Ask your provider if they have any Parkinson’s materials. You might even bring a copy of our Every Victory Counts® manual to a visit and ask if they would be willing to keep one in the staff library or the office lobby.

Sometimes the best way forward, if your primary care doctor doesn’t seem interested in learning about Parkinson’s, is to change providers. If you choose to do this, talk with members of your care team and the local Parkinson’s community leaders for recommendations. If you find that the most recommended provider is not accepting new patients, explain to their office staff why you are interested in receiving care from that provider. They may make an exception.

Be A Comprehensive Advocate for Living Well Today

Your experience visiting with providers who are not Parkinson’s specialists will be unique, and you should be prepared to listen even more attentively than usual during these visits.

If you prepare well for every visit with a care provider by having a comprehensive history and list of your questions and concerns, you will improve the outcomes of your visits with all care providers, regardless of their level of familiarity with Parkinson’s. Moreover, by doing these things and by remaining clear and kind in your communications with care providers and their staff, you can help improve care for others by increasing care provider understanding of Parkinson’s and the issues those living with it face.

Additional Resources

Every Victory Counts® Worksheets for Medical Information

Hospital Stays and Parkinson’s

Aware in Care Hospital Kit

How to Plan for Your Next 15 Minutes with Your Doctor

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*While the generous support of our sponsors makes our educational programs available, their donations do not influence Davis Phinney Foundation content, perspective, or speaker selection.


You can learn much more about living well with Parkinson’s today through our Every Victory Counts® suite of resources. Each manual is packed with up-to-date information about everything Parkinson’s. Click the link below to order your manual(s).

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Thank you to our 2023 Peak Partners, Amneal, Kyowa Kirin, and Sunovion, and our Every Victory Counts Gold Sponsor, AbbVie Grants, for their ongoing support of these must-have manuals. Additionally, we’d like to thank Barbara and Dale Ankenman, Abby and Ken Dawkins, Bonnie Gibbons, Gail Gitin in loving memory of Gene Gitin, Irwin Narter, and Lorraine and J Wilson for their generous donations that allow us to make these resources available and free to all.

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