Taking Charge: Strategies for Meaningful Healthcare Visits

Crista Ellis 00:00:03
Hello everyone, and welcome to the Parkinson's Foundation's Wellness Wednesdays webinar. Thank you for joining us. Please know we are recording today's presentation, and you will receive a follow-up email from us with a link to the recording and additional resources in about one week. Our program today is not as traditional as our other Wellness Wednesdays, and we will be together today for 75 minutes, so I hope you can stick around for our extended webinar. We'll begin shortly, and thank you for being here.

Hi everyone, and again, welcome to the Parkinson's Foundation's PD Health at Home Wellness Wednesdays. I'm so grateful you are here.

Today's PD Health at Home Wellness Wednesday webinar offers us tools to optimize our appointments with our healthcare providers before, during and after. Please have a pen and paper with you on hand. If you don't, don't worry about it, but it will be helpful to take some notes, outline some of the resources that we'll be sharing and even some of the examples that we'll be offering in today's presentation.

Before we get into it, I want to remind you about our other PD Health at Home virtual programs. Each week we offer sessions tailored to support people with Parkinson's and their care partners, including Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays, expert briefings with our Chief Scientific Officer and our Spanish language series, Y Salud en Casa. Be sure to visit our website by scanning the QR code to see what's coming up and explore our archive videos on YouTube.

PD Health at Home is presented by the Light of Day Foundation, whose generosity has made this programming possible.

I'm pleased to welcome our first speaker, Dr. Muhammad Nashatizadeh, a board-certified neurologist and director of inpatient movement disorders at the University of Kansas School of Medicine. Dr. Muhammad brings deep expertise in treating complex movement disorders in hospitalized patients. He also trains neurology residents and fellows, earning repeated recognition for excellence in medical education. He completed his medical degree and neurology residency at the University of Kansas, followed by fellowship training at Baylor College of Medicine. His research focuses on atypical parkinsonism, parkinsonism and the overlap of movement, cognitive and sensory disorders. Please join me in welcoming Dr. Muhammad Nashatizadeh.

Dr. Muhammad Nashatizadeh 00:02:35
Thank you so much, Crista. That was very wonderful. I'm very pleased to be here, and I'm very excited to see such a great turnout for this Wellness Wednesday webinar.

One of the things that I'm really excited to talk about today before some of our other panelists join is how you can get more out of your interactions with healthcare professionals. Many people who have Parkinson's disease are not suffering alone. They often have family members and caregivers to help and support them, but many times people over the years, having been a movement disorder specialist now for 17 years, will confide in me that they often feel like they are not getting as much out of medical visits. I'm here to talk more about why an active approach to care matters.

I remember when I started medical school 26 years ago. I like to say that I went to medical school back at the turn of the century. There was a lot of discussion about access to care, and what usually that meant was whether or not people had medical insurance to be able to afford going to the doctor. But over time, it's not so much that that's the only barrier. There are many people who have the financial ability to afford going to healthcare professionals. They have medical insurance. They may have medication coverage, but the shortage of neurologists and movement disorder specialists continues to be a growing problem throughout the United States.

Some of you may already be familiar with the Parkinson's disease numbers based on research from the Parkinson's Foundation. There was a study back in 2023 that looked at where people with Parkinson's disease are receiving their care. It turns out that only 9% of people with Parkinson's disease are actively seeing a movement disorder specialist. This is usually a neurologist who's had additional training in the area of Parkinson's disease and other movement disorders. As you can see from the orange slice on the pie graph, there are a number of people with Parkinson's disease who actually have no healthcare professional. That is more, at 11%, than the number of people who have a movement disorder specialist.

Half of people are seeing a general neurologist. The rest are seeing their primary care provider, whether that's a physician, a nurse practitioner or a physician assistant, who may be supportive and helpful but may not have a lot of additional training in Parkinson's disease. At the same time that study was being conducted, it was determined that nationwide, for 340 million people and probably 180 million of them being adults, there are only 660 movement disorder specialists in the entire United States. Even though it seems like, well, that's several hundred, that shouldn't be a problem, recognize that for most people who are movement disorder specialists, a full load of patients may be somewhere between 2,500 patients to maybe 4,000 or 5,000 patients.

Dr. Muhammad Nashatizadeh 00:06:11
Each patient also has family members or other caregivers, and so the wider net of the number of people who are affected by Parkinson's disease is very high. Many times when neurologists or even other specialists are trying to establish a care practice, one of the things that often comes up is that we are taught to be thinking about our overall support system as physicians, nurse practitioners and physician assistants.

Being able to be in a place where there may be enough accessibility for patients, to have other colleagues so that if you need somebody to cover for you, these are all important considerations. It's not surprising to me that when they looked into this, out of the 660 movement disorder specialists in the United States, it turns out only six are in rural areas. This often means that many people with Parkinson's disease are traveling anywhere from 30 to 45 minutes to upwards of even five to six hours just to be able to go and see someone who has this specific training in managing Parkinson's.

No matter how long the travel times are or no matter how many weeks or months it takes to get in, whether as a new patient or as an established patient with follow-up, when you show up to your healthcare provider, there's a lot of important material that's Parkinson's disease related to cover in a very short amount of time.

Many people will say that they only have a 15-minute appointment, and that may be once or twice per year. There are certainly some people who may have longer follow-up appointments, like 20 or 30 minutes. Some people will say maybe they can even see their specialists up to three or four times per year, especially if they have a lot of problems that are active and they're not under good control. But these numbers are sort of the average.

If a person only has minutes with their healthcare provider per year to talk about Parkinson's disease, I hope that some of the specific strategies that some of the other panelists will be covering today will be useful. I hope that you'll be able to pay attention because I think they give some very useful advice on how to make the most of the time that we have together.

The example that I've sometimes given, and I would hope that most of us who are movement disorder specialists, neurologists and people in healthcare who care, we certainly don't think of ourselves as self-important or that our time is super valuable. We're helpers. We want to be able to help people. But ultimately, if I knew that I had a very important discussion that I needed to have with the governor of my state, and this would be planned two or three months ahead of time, it would be usual that I would want to show up prepared. I would have some notes. I may have spent an hour of time or maybe longer to organize my thoughts so that when I could show up and speak to this person who's going to have hopefully a tremendous output or benefit for whatever it is I'm asking, I would be prepared and I would use their time carefully so that I would get the message across clearly.

Dr. Muhammad Nashatizadeh 00:09:33
Sometimes people with Parkinson's disease, and this is usual, it's hard to quickly identify what the priorities are. Parkinson's disease isn't just about movement. There are often non-motor problems. There are often mood, sleep and cognitive problems that are ongoing. Part of being able to focus the time is to prioritize. I might have four or five or six things that are going on that I really want to talk about, but what are the two that are the most important? What's the third one in case there's more time? Having that organization allows you to prioritize so that the next time you meet, or even between visits, you may be able to continue to work on some of those things that were further down the list.

Appointment times run on schedule. As you see even with this webinar, things will run very carefully and clearly, and there's been a whole team of people that have been organizing this. Time is important, and sometimes appointments can end without covering the material or the topics, the priorities that are the most important to you. If you tend to speak very openly but not in an organized manner, the time can run out, and then you miss out on that opportunity. Many patients have said that they have struggled with this. That's why I'm really glad that the Parkinson's Foundation is addressing this issue today.

You want to make sure that your questions and concerns are answered. There's some sort of process that's ongoing. You want to be clear about what the next steps will be, and you want to be able to have connections to other resources, whether they're local or online, to be able to continue to work on the problems even outside the visit.

A lot of people who have Parkinson's disease are not brand new at being an adult. They've often lived as adults for many years, and so that also means that a lot of us are sort of set in our ways of doing things. We know what our strengths are. We know the things that we struggle with the most. Sometimes when you're trying to get the most out of a situation, there can be a little bit of anxiety or a little bit of discomfort about trying to do things in a different way. Sometimes we latch onto the things that we're used to and the methods that we're used to. But having a shift in thinking can often be helpful.

It doesn't have to be that you completely overhaul how you approach your visits with a healthcare professional. There are actually some simple steps that a person can take to have more meaningful appointments. Remember, you're the one who's going through the process. You're the expert on what your experience is. Your healthcare team relies on you to share what those concerns may be and what the priorities will be. This is true for patients, family members and caregivers. Be an active partner with your healthcare team. Work with them. Present the concerns.

If the last appointment didn't go well, maybe it's time to mention something and say, 'I really want to make sure that I talk about the things that are very important to me because I really value this time that I have with you.' It is usual that that might feel uncomfortable at first. Sometimes people struggle to have their voice be heard if they don't feel that they're heard, but it will get easier with practice. Sometimes even talking in front of a mirror or talking with another family member or caregiver and saying, 'These are the things I want to bring up. I would like to have a practice round to go through this.'

Dr. Muhammad Nashatizadeh 00:13:07
Together, you and your healthcare team can help make the most of your Parkinson's care.

One strategy that I want to highlight is to think of this as a cycle. Just like going through any other cycle, whether you are washing dishes or doing laundry, there's sort of a process to remember. My wife will attest to this. Both of us, I feel like we just have never-ending laundry at our house. The minute the laundry's done, we sort of get back into the process again. But the appointments that you have with a Parkinson's disease healthcare professional also fit a cycle.

There's the time before your appointment, there's the time when you're actively during your appointment and then there's the time afterward, which is between those two appointments. When you start off beforehand and you have a plan, and you say, I want to make a list of the top three questions or concerns, if they're delivered efficiently, it is possible that they may be even able to help you with more than those. But having at least that organized ahead of time means that you're not running out of time. During the appointment, it's very important to go in with the mindset that you need to speak up about what matters the most to you.

This way, if you start to feel nervous or you feel like, I'm just going to go back to my old habits, and even the best-laid plans, then you're in the appointment time and you're not sticking to the thoughts that you had, this can be a struggle for people. That's why you have to go in during the appointment and say, I'm going to be ready to do it this way to try to engage my healthcare professional.

Then taking action to live well. It's not just that many people are trying to get from appointment to appointment, but the time between your appointments, that's your life. Being able to take those actions and work with those other local, community or online resources or the suggestions that your healthcare professionals offered to you, that's the time to take action. If that action isn't working, there may need to be some feedback even between visits. But otherwise, then the cycle can repeat.

I want to thank you again for attending this webinar today. I think that you will find that the panelists who are here have a lot of excellent anecdotes. They have experience going through this themselves and/or helping others with Parkinson's disease. With that, I'd like to hand this back to Crista. Thank you so much.

Crista Ellis 00:15:47
Thanks so much, Dr. Muhammad. I really appreciate how you are outlining why advocating for ourselves in our healthcare appointments is so important. Now we're going to hear from Dr. Kathleen Blake, a retired cardiologist, health policy leader and a person passionate about advocating for Parkinson's. She served as vice president for healthcare quality at the American Medical Association, where she focused on health equity, value-based care, AI and patient safety. She has also co-chaired the Federal Health IT Policy Committee and helped lead the National Evaluation System for Health Technology.

Since her Parkinson's diagnosis in 2017, Dr. Blake has been a powerful voice for the community and now serves as Vice Chair of the People with Parkinson's Advisory Council with the Parkinson's Foundation. She trained at Stanford and Johns Hopkins, practiced cardiology in New Mexico for over 20 years and continues to teach part-time at Johns Hopkins. Please join me in welcoming Dr. Kathleen Blake.

Dr. Kathleen Blake 00:16:50
Crista, thank you so much for that kind introduction and really for the opportunity as a person with Parkinson's to be able to share my perspective on what we've just heard and also really sitting on both sides of the table. My years of clinical practice have paid off in spades for my experience as someone with Parkinson's.

What is self-advocacy? It's not just politics. Advocacy means that you are actively participating in your care and that it is important not just to you, but your care partners, the people who care about you. Self-advocacy means that you understand, and it may be that you come to understand over time, what it is that you need. Especially with Parkinson's, because it is a chronic condition, a progressive neurologic disease, what you need at one point in time may be different than what you need in five years.

I always think of focus on the present, think about the future, but take care of yourself now. Self-advocacy also means you know how to speak up for yourself. For me, that's no problem. For some people, it is a learned skill, and our goal with this webinar is for you to learn how to do just that.

Also, that you have the information you need to make good choices. Some of it you will find yourself, but we strongly urge you to use sites like the Parkinson's Foundation website, Parkinson.org, or to use our helpline, and that is 1-800-4PD-INFO. We'll have it for you up on the screen shortly. Self-advocacy matters because you're the only consistent member of your healthcare team. You are present throughout, not just during the clinical visits, but you are present between the visits that you have with the people helping take care of you.

You are the expert on you. You may not use the fancy medical terms that you might sometimes hear batted around, but you know how to describe what you are feeling. For those looking, the helpline number has just been put up on the chat. Because self-advocacy matters so much, how will you know it? It can have a real impact on the care that you receive.

I'm going to go back to this just terrific flow diagram that you've seen just a little while ago and really go a little bit deeper on some of the different steps, but particularly the making of a list of your top three questions or concerns and learning, and then being able to speak up about what matters to you most. It is very much, as you just heard, that you would not think about going into a visit with a lawmaker or perhaps even with an attorney or some other individual who can have a significant impact on your outcomes without some pre-planning.

Dr. Kathleen Blake 00:20:05
Don't be embarrassed about the need to pre-plan. We all pre-plan. Probably the people taking care of you have pre-planned the visit by reviewing your chart, your prior visits and any test results. It's fine to come in with a list of notes. Seeing it in writing really forces you to prioritize your top three questions.

They may not come up on the first sort of draft of what those will be. My experience tells me that people oftentimes don't get the order quite right. They ask the easy questions first. What about this? Can I get a prescription for an exercise program? But really what they want to talk about is, I'm having trouble sleeping and I've actually been kicking my partner in bed at night. What can I do? Things that we may be more reluctant to discuss. I've also found that people are reluctant to discuss issues that might result in a change in their level of independence.

Don't cheat yourself by just asking the easy questions. Ask the challenging ones first. In terms of being able to actually speak up about them during the visit itself, you have the list. You can take notes. There's nothing wrong with keeping your eye on the clock, because there is a clock. It's a mental clock, it might be on the wall as well, it might be in people's watches, but keep your eye on the clock. Because then you can say, I want to be sure we get to the third topic on the list. I don't want to miss the chance to get your input on that.

Then the benefits of pre-visit preparation. I would add to this list, which is here, figuring out are there ways that I can front-load information so that we get right to my top concerns. This particularly is important by reviewing your list of medications because different clinicians may be seeing you not just for Parkinson's but also for any other conditions you have. Looking at that list, I've gotten to the point where I go over my list with a fine-tooth comb. It's only recently that I walk in and the list is correct from the get-go.

Preparation shows you and the people taking care of you that you really do want to be an active member of the team, and that you want to be sure that your healthcare needs and concerns are guiding the appointment, and that you get the kinds of referrals and resources you need. Quite frankly, then the people taking care of you feel much better about the visit that they've just had because they don't want you to leave saying it was a bad visit.

Now, in terms of bringing a companion to appointments, I think that this is something where people vary over time. It may take some getting used to, the idea that someone is going to come with me. But some of the things that can help you are to have a conversation with the companion who will be joining you and say what your expectations are, what you would like their role to be during the visit.

Dr. Kathleen Blake 00:24:09
They may interrupt and say, Kathy, you forgot to mention such and such, or you're not getting to topics number two and three. Or they may say, I think she might be underestimating how much of a problem her sleep is, whatever it might be. They learn how to be that gentle nudge, the record keeper.

They're also able to, when you go home, and typically you'll arrive together and you may leave together, have a conversation about what did we both hear? They'll be able to support you between your visits with your clinician. As a reminder, it does not have to be the person, let's say, who is your spouse or your life partner. It can be the person who you feel will best serve in this particular role.

What are the benefits of open communication? I think it should be clear by now that without open communication, your important concerns may just not get addressed. This visit, we're trained to be pleasant people, but it's not about being pleasant and it's not about chit-chat. It is about you and your Parkinson's concerns. With open communication, it really does foster trust. Your healthcare team feels like they know you, and you feel like they know you also. They're able to recommend treatment options and resources that might better fit your needs and concerns.

I'll thank you for joining us on this webinar, and I will turn things back over to Crista.

Crista Ellis 00:26:17
Thank you so much, Kathy. I really appreciate all that you offer our community in self-advocacy and why it's important and what that might look like. I'm looking forward to bringing Dr. Muhammad and Kathy back during our Q&A session. Now I'm pleased to introduce Dr. Taylor Rush, a clinical health psychologist at the Cleveland Clinic Center for Neurological Restoration. She serves as director of behavioral health services, leading a team that supports patients with Parkinson's and other movement disorders.

Dr. Rush helps individuals adjust to diagnosis, manage depression and anxiety, improve communication, which is a common thread here in all the presentations that we're hearing, and prepare for surgery like deep brain stimulation, also incorporating mindfulness to support emotional and physical well-being. You might recognize her from the Foundation's PD Health at Home Mindfulness Mondays. Please join me in welcoming Dr. Taylor Rush.

Dr. Taylor Rush 00:27:13
Thank you so much, Crista, and thank you, everyone, for being here today. I'm truly honored to be part of this incredibly important conversation because as someone who works embedded in a neurological center for movement disorders, I talk to patients a lot about their medical appointments, ones that they have that are coming up, ones that they've just recently had, and how did they go? I definitely see some common threads in terms of the types of things that people are concerned about.

Things that have been touched on already in terms of the limited amount of time that you have to review your concerns with your provider. There's anticipatory anxiety about, am I going to remember everything that I wanted to for this visit, and will my provider understand where I'm coming from? Will they potentially judge me for some of the concerns that I have? Because sometimes people may have symptoms or issues that are new and maybe scary or uncharacteristic.

Because we can see, with Parkinson's, impulse-related issues or sometimes issues with hallucinations or other things that are incredibly important to bring up to your provider, but people don't always like to talk about openly. We've discussed a lot about how we can do that in a meaningful, effective and efficient way. I want to talk to you all a bit today about some of those skills and strategies that I often share with patients and ways that you can incorporate them at your next visit.

You've heard this message already, but I'm going to really take it home that you are the world's leading expert on you. There is no one else who knows you better than you do. I think it's really important when you come into these conversations with your medical providers that you remember that at your core. Because I think a lot of times people may have this core belief that, well, the doctor knows best. They will let me know if something's important or not. No, you're the one who goes home each day and has to live your life in your body with your symptoms.

Therefore, what you have to say is truly the most valuable part of this visit in order to get what you need out of it. A few pearls of wisdom, per se, that I'll often share with patients is, one, sometimes healthcare professionals forget what they know. We live in these medical environments where we use jargony phrases that most people have no idea what it means, and a lot of abbreviations for things, and sometimes we forget that other people don't know these things.

Ask questions, even if they may feel, you know, we always say there is no such thing as a stupid question, right? Because you don't necessarily know everything coming in the same as your provider. Recognizing that sometimes you have to call that out and be able to ask for additional explanation on things. Your perspective and questions are not going to cause offense. I think sometimes people think that they may interject too much or they may talk too much or they may have strong opinions about things and they don't want to be seen as difficult. But truly, it is important to share your perspective and your questions and things that you're confused about. It doesn't make you look incompetent, and it doesn't mean that you're being difficult. It just means that you require further clarification, as most people do during these visits.

Dr. Taylor Rush 00:31:02
Of course, sharing your personal goals so that your provider understands what matters most to you. I have patients where their ability to play golf is incredibly important to them. Their ability to run after their grandkids and be able to care for them. Their ability to cook a home-cooked meal for their family. There are things that matter to them that they really want to be able to maintain for as long as possible. How do we do that? By making sure that we communicate those needs to your providers.

I'll also have this conversation sometimes that, while movement disorder providers, as Dr. Muhammad had mentioned, are not always easy to come by depending on where you're geographically located, it is important to find the right provider for you. Sometimes you may find someone who on paper looks fantastic, but interpersonally, it's just not working for whatever reason. It just may not be a great fit with your personality and theirs. It may be that how they prioritize things is different, their treatment approach may not fit well for your needs, whatever it may be. Recognizing that, again, you are in the driver's seat on this, and it's important for you to be able to find the right provider that works well with you.

I have some thoughts on how, you know, we've talked about what does self-advocating mean? How does it mean that you get your needs met? How does it mean that you're able to communicate your concerns effectively? How do we do that before an appointment? One thing I have found in working with physicians and other medical providers is that they tend to think in bullet points. I have written emails now much more succinctly and in bullet point form because that is what they respond to.

Sometimes being able to practice saying your appointment priorities out loud can help you to bullet point your speech a little bit so that you can say what you need to say in more efficient wording. There's the old saying, I would have written a shorter letter, but I didn't have time. When we aren't quite sure how we want to say things, we tend to talk more. Practice things beforehand so that you can say things as directly as possible.

Maybe sharing some of your appointment priorities with families or friends because they may be in agreement with you, or they may have their own perspectives that could be taken into consideration in terms of what they've observed.

Dr. Taylor Rush 00:33:54
Always know what your resources are. Again, the Parkinson's Foundation Helpline is available to all for questions about anything related to your Parkinson's journey. Sometimes it can help to be equipped with some of that information before your appointments. If there are articles that you've read or new research that you've seen, or there are certain education materials that you really want to review, look them over while you're waiting to speak with your healthcare team, either at home or in the car or in the waiting room. It can be a nice way to pass some of that time because, as we know, those trips can sometimes be a little bit longer than any of us want.

A few things to consider during the appointment. Again, it's important to make sure that you are able to direct your provider to the things that are most important to you today. If you do have your priorities written out, it can be helpful to then just share that with your provider. So, it's nice to see you again today, Dr. Smith. I have a list of some of my thoughts for today's visit. Can I share it with you? I actually work with med students quite a bit too, and we discuss how to elicit those concerns and thoughts from patients. We always tell them, if they have a written list, take it from them. Actually read it, and then that can also help to make the time more efficient.

Sometimes providers, there are some that are very direct and to the point, and there are some that are a bit more chatty, and they may go off topic. It's great to get to know them a little bit more as a person or have more conversation, but again, we're dealing with a short period of time for which you have your visit. We want to make sure that we get to all of those priorities, right? Saying, I know, Dr. Smith, that your time is limited, and I want to make sure that we have time to discuss not just my tremor, but I'm also noticing some increased freezing of gait, and that's really been bothersome. I want to make sure that we have time to discuss it.

Of course, if you feel that perhaps your provider is making a recommendation, but there might be some gaps in understanding why they're making that recommendation, so if they are recommending a medication change or they're recommending physical therapy, saying, okay, I understand that you are recommending this change in treatment, but I want to understand better why or how this is going to address my tremor. Help them to connect the dots a little bit so that they can provide some of that information because, again, sometimes physicians forget what they know.

Dr. Taylor Rush 00:36:45
If at times you may feel that your provider doesn't maybe fully grasp the concern or question that you have, maybe they misheard you, maybe they focused mainly on one piece and not another. Perhaps they can give great education about sleep and how that's affected in Parkinson's, but asking, but I do want to know more about what I can do to manage it, and especially if we could do it without maybe more medication. Giving them some direction on the topic that is of concern can then help them really dial into the most important parts for you.

This sheet is actually available now through the Parkinson's Foundation website, and there is a QR code here in the corner that allows you to use the camera app and take a picture, and it can put a link to the actual worksheet that we have here. This is the Parkinson's Foundation's steps to prepare for a Parkinson's appointment. It really breaks down all of the things that we've been discussing today in terms of understanding how to best utilize your time during your medical appointment and really making sure that you are looking at all facets of your life and the ways in which your functioning is affected by Parkinson's. To show you in a little bit more depth here, oh, and we do have a link in the chat now for downloading the worksheet if that is easier for you. Thinking about how Parkinson's affects your life in every area.

Yeah, so we know physically, yes, there are ways in which it affects you. But oftentimes when I'm working with patients, I ask, but what does that translate to? Someone can have tremor, but what does that mean? What does that mean for them and their life? Are they someone who does a lot of toy modeling and so fine motor skills have been incredibly important to them? Are they someone who really enjoys working with their hands and tools? What are the things that are affecting them in their everyday life, not just from a physical perspective, but how is it affecting how they see themselves and their mental health?

How is it affecting relationships? How might it affect any work that they may engage in? All the daily activities of living that they may do on any given day, as well as the fun stuff. The things that make life enjoyable, the things that make us happy, the things that help to increase the quality of life. Really understanding what the Parkinson's symptoms affect in all these different areas, reflecting on what's new in terms of those developments, what matters most to you in your life right now, and what you want to address and what your biggest concerns or worries or questions are in relation to these new pieces to your symptom management.

Dr. Taylor Rush 00:40:00
In part two, and sometimes this can be hard, and sometimes it's easy, choose your top three topics for the appointment. If we can get to more, I might label more, but often in anywhere from a 10- to 30-minute visit, these are not long appointments where we can sometimes address more than three things. So if I can only discuss three things with my healthcare team during this visit, what are the top three? Making sure to list them in that order and making sure to talk about them in that order, because sometimes, if the most important thing, as Kathy said, is left to last, then you end up with very little time to talk about the thing that matters the most to you. Making sure that those topics go in order of importance.

Remembering that what you do between appointments really does matter. How do you follow through on the recommendations that are given to you from your provider? How are you able to make sure that you are advocating through your own education about Parkinson's? How are you accessing resources, like coming here today to learn more about how to utilize your medical visits? How do you engage in exercise and support groups and monitor your own progress? For some people, they will jot things down as they go if they notice new patterns to their symptoms, or how quickly their medication is wearing off, or if they're noticing new symptoms. They write it down because so often we may think about something and then it flies out of our mind, and then we don't think about it again until it happens again. Being able to have these things written down sometimes can help to show a pattern that may be developing with new symptoms or progression of symptoms.

I often will tell people that thinking about the things that you do in between visits to maintain your physical, emotional and cognitive health is like putting tiny marbles in a very large pickle jar. It may not seem like any one day that you exercise or any one appointment that you go to may make a big difference, but the more you do these things over time, those tiny marbles will accumulate much more quickly into that jar.

We wanted to share with you all a brief case study on the power of self-advocacy. I'm going to introduce the story of Maria. Maria, for me, is an amalgamation of a lot of patients that I see, and so I kind of drew on a few different pieces that I think would be relevant for our topic today. Maria is a 69-year-old retired teacher who's been diagnosed with Parkinson's for roughly three years. She does have medication to help her manage her Parkinson's, and then she does engage in a little bit of physical therapy to help with balance and strength.

It's really important for Maria to be able to stay independent and be able to work in her garden. It's her joy every spring to be able to start doing that again and again, and she wants to be able to maintain that. Right now, Maria is concerned with noticing a bit of increased stiffness, and her sleep is becoming less restful and more interrupted, and she's having trouble both falling asleep and staying asleep for long chunks.

Dr. Taylor Rush 00:43:43
Maria comes in to see her neurologist in October, and she comes in feeling a bit nervous. It's been a while since she's seen her provider, and so she knows that she is going to have to go through the whole physical exam, and she's got to come downtown, and it's a whole process and takes half a day. She doesn't bring her current medication list because she assumes her doctor has it. She forgot that she's taking an over-the-counter herbal supplement for sleep because, again, she didn't bring a list of the things that she's taking, and it slipped her mind.

She kind of downplayed her sleep problems and some recent falls because she knows that this doctor doesn't have much time, and he seems very busy, and she doesn't want to seem like a difficult patient. Her neurologist decided that they wanted to adjust her medications yet again and suggested that she return to physical therapy. She said, okay, that sounds good. I appreciate your help, but doesn't necessarily fully understand why her neurologist is making those changes.

She leaves the appointment feeling a little confused, a little whirlwind, and isn't quite sure how to proceed with these next steps because she's not sure, actually, how she's supposed to. Is the PT supposed to contact her? Is she supposed to contact them? Why is she going again? Over the next few weeks, she notices that her symptoms are worsening, her sleep is worsening, and she's feeling rather frustrated and isolated because it's not going to be for another six months before she sees her neurologist.

I want to stop here for a moment and invite Kathy back to our conversation here. I want to have a little bit of time where we can reflect on, what do you feel like happened here in Maria's appointment? What do you feel like were some of the pitfalls?

Dr. Kathleen Blake 00:45:58
I think that this was a real missed opportunity for Maria, but also for the people taking care of her. It started very much with the fact that she was anxious. I think some of the strategies that we've already mentioned can be good ones to address and then mitigate, and really eliminate or significantly reduce the anxiety before she even gets to the clinic.

The second is that I think there was a missed opportunity to probably deal with, to me, the scariest issue, which is the falls. Many of us know that falls are a serious challenge for people with Parkinson's. So I wonder, was she anxious also, not so much the doctor's busy, but really she's anxious about having to admit that she's had a fall? She may want to downplay it because she doesn't want to be told, oh, it might be that your Parkinson's is progressing, or it might be that you need to stop doing some of the things, like gardening, that you love. Which is unlikely. She's just maybe going to be told how to do it differently.

Lastly, the issue of medication. I alluded to, come in with your list or pre-check it so it's already there because you can save a ton of time in terms of your visit. I wondered also if she was a little reluctant to discuss the herbals that she was taking. Maybe she's on melatonin, fine, but depending on the state that you live in, is she using CBD? Does she not want to disclose that to her provider? So, chock-full of opportunities that are missed and that you would hope can be recovered the next time.

Dr. Taylor Rush 00:48:07
Yeah, absolutely. I often see that too, where patients may sometimes minimize some of the symptoms that have progressed because they're concerned about what their provider may say or how they may be asked to limit certain areas of functioning that they feel like could impede on independence. So I certainly see that. I also see sometimes where people are on supplements that they're like, oh, but it's not a medication, so they kind of think, oh, that's not pertinent, even though it very well could be.

There are all kinds of interesting reasons why sometimes people don't disclose some of those additional things that they may be supplementing. I appreciate your thoughts on that, Kathy, and I can imagine that there may be some folks in our audience where some of these things definitely resonate.

Dr. Kathleen Blake 00:49:03
True.

Dr. Taylor Rush 00:49:04
Then let's see what happens to Maria in April. We call this her take-charge visit. Maria decides that she reflects on some of these things that didn't go quite well the first time. She comes to her appointment feeling more prepared because she now has a list of all of her current medications and supplements, including the sleep herbal remedy.

She has a diary of her symptoms and how they have manifested over the past six months, and she listed out her priorities: wanting to be able to improve her sleep, reducing some of that stiffness that may contribute to falls, and also being able to maintain that ability to tend to her garden. She shares that list, symptom diary and priorities with her provider.

She has a much more open conversation about her symptoms and how they are affecting her daily life, and really emphasizes that her goal is to be able to continue to garden. It's something that she greatly enjoys. We're heading into spring, and she wants to be able to do this as much as possible through the summer months. She asks for more clarification about her doctor's recommendations, and she asks for written instructions. I always tell people relying on your own brain for anything is always risky. So write it down. Write everything down. Have your providers provide written pieces to the visit as well.

Maria then leaves the appointment feeling much more empowered and much more clear about next steps for her care. As a result, it makes her feel more in control of her own health, as well as like she has a much better understanding of where she's at with her healthcare team and that they get what's going on for her and what's important for her. That way, if she does need to check in sooner than the next six months, they already have some context as to what is important to her and why, and what it is that she's struggling with.

Based on that, I would love to hear, Kathy, some of your reflections on what went differently this time for Maria.

Dr. Kathleen Blake 00:51:28
Let me get myself unmuted and back on video. First of all, I love the graphics, the fall and then the spring. I think that you now have really, side by side, two examples: opportunities lost or missed, opportunities fully taken advantage of.

Quite honestly, what that will do is that sets the stage for not just the next six months, but this is hopefully going to be a long-term relationship with the person who is taking care of you, if you are like me, a person with Parkinson's. You get more and more comfortable over time. I can absolutely guarantee it, with raising the tough questions. Maybe it's a mood disorder, but maybe you're also thinking about, am I still able to stay in my own home? Or am I able to continue to drive? This learning early gets you ready for whatever later looks like.

I think that I used to talk about it, it was almost as if we had like a direct brain connection, being able to have that kind of communication. Taylor, you're absolutely right. If any individual thinks they are the first person who has raised an embarrassing question or one that embarrasses them, no. Everybody in practice for more than, I'd say, a few weeks has heard it all. You will not be the first, you will not be the last, and you're the one who's holding back, not the clinician.

Dr. Taylor Rush 00:53:29
I agree wholeheartedly on that. So many patients will disclose things that they think are so unique to them and they feel incredibly embarrassed, and then, once they share it, I'm like, no, actually, you're probably the fifth person who's told me that this week.

Dr. Kathleen Blake 00:53:46
Yes.

Dr. Taylor Rush 00:53:47
I think just recognizing, yes, this is the time to be open and honest. It's being honest with your provider, but it's also being honest with yourself, and sometimes that's the harder part.

Dr. Kathleen Blake 00:54:00
I think it is. I would just say to people who are watching this too, and I alluded to it before, you don't have to consume every last morsel of information that's out there about Parkinson's, even on really wonderful websites, all at once.

The advantage is you have time. You're able to absorb at a rate that works for you. So don't feel like you have to know exactly what will happen 10 years from now. No, you don't. You need to be thinking nearer term.

Dr. Taylor Rush 00:54:41
Absolutely. Like you said, I think, live for today and take care of yourself. I think that resonates so strongly for so many people. Thank you for sharing that.

Crista Ellis 00:55:00
Thank you, Taylor, and thank you, Kathy, for walking us through an example of what might be a common experience for those of us who step into an appointment with a provider. Then you offered us an example of what Maria did to really advocate, using the language that we're learning here, for herself in the time of her medical appointment with her provider. That supports herself, yes, but it also gives direction and guidance for her provider to support her needs in the way that she's seeking support. I really appreciate the way that you both outlined that for our community here.

Dr. Muhammad, would you join us back for our Q&A? My friends, we have time. We have extended this webinar so that we can answer questions, and we have three experts here who are donating their time to answer these questions. Feel free to type into the Q&A tool. Chat works fine too. We're monitoring both. The first question that seemed to really bubble up in registration for all of you who signed up for our program today was: what questions should I be prepared to ask at an appointment, if any?

I'm just throwing that one into the court to see who catches the ball.

Dr. Kathleen Blake 00:56:23
I think we should have Muhammad answer that first.

Dr. Muhammad Nashatizadeh 00:56:27
All right, thank you. I think depending on the type of provider that you're seeing, sometimes you'll see that if you're seeing a movement disorder specialist, many of us have a very organized checklist. I've had patients over the years say, I don't really want to fill out these three pages of information of all these questions that the movement disorder specialist wants to ask, but that's a very comprehensive way to try to figure out very quickly and be able to spend the time on what is going on or what really needs to be addressed.

But if you are seeing a general neurologist, if you're seeing a primary care provider, I think the most important thing is going to be to address and ask the questions that are related to the problems you are having. It could be something that's not movement related. It could be something that you may not think is even related to Parkinson's disease.

Somebody may think, well, my knee pain is because I'm getting older and I've just hurt my knee, but it's possible that that could be dystonia from Parkinson's disease. It could be that you have osteoarthritis and that's getting worsened. Sometimes people are sort of in silos. They're like, I don't know which things I should ask about. Depending on what your biggest concerns are, even when people are in training, we all learn about what's called the chief complaint.

My mentor, who was a Parkinson's movement disorder specialist, used to ask everybody, even after decades of doing this, "What seems to be the thing that bothers you the most?" Rather than waiting for them to ask you that, say, "I want to tell you about the thing that bothers me the most." Then use that as a segue to ask whatever question you need. But this goes back to the theme of this whole talk, which is being prepared, coming with the idea of what are the three topics I want to ask.

Sometimes, rather than spreading all of the story about what's been going on with you, if you can say, these are the two or three things that I want you to know about it. Now, here are my questions. Is this something that needs further workup or testing to try to get to the bottom of what's going on?

Care providers are often diagnosticians. It's not just I'm having a symptom, here's a medication or a treatment. This is how people often end up on way too many medications. But I think if you focus on those things, that will be the priority.

Crista Ellis 00:59:00
Thank you.

Dr. Kathleen Blake 00:59:01
I might add one thing because the Foundation has done tremendous work looking at patient safety and hospital safety, and it's because we realize we're not as safe as we would like to be yet. We will get there, I hope, sometime.

For example, I had a total hip replacement about a year ago and wondered whether the pain in my hip was from Parkinson's. No, it wasn't. I also asked my movement disorder specialist, what do I need to expect in terms of when I'm under an anesthetic? It wasn't a general anesthetic. What do I need to expect in terms of I'm not going to be able to exercise the way that I have in the past?

You might not think that a hip replacement affects Parkinson's, but they can relate to each other. Don't pre-assume that the movement disorder specialist doesn't want to hear about your hip. They absolutely do.

Crista Ellis 01:00:10
Yeah. What I'm hearing is focus on what matters most to you. It's like the exercise regimen, right? Everyone wants to know what's the best exercise for Parkinson's, and what's the answer?

The one that you will do. The one that you will do. When we're framing up what questions do I ask my movement disorder specialist, what I'm hearing is focusing on what matters the most to you and developing your own priorities, your own list of questions, versus using a standardized set of questions for each kind of expert that you might be seeing in your healthcare journey. Did I reflect that accurately, Dr. Muhammad?

Dr. Muhammad Nashatizadeh 01:00:51
Yeah, I think that was wonderful.

Crista Ellis 01:00:54
Great. Taylor, anything to add about these questions to ask our providers?

Dr. Taylor Rush 01:01:00
I love what Kathy said about linking your health issues because I think you have to recognize you are a whole person, and oftentimes you don't just have Parkinson's. Those things can interact and affect one another, and that's important information for your provider to know. Recognize that, yeah, it's not just the Parkinson's sometimes that you end up discussing in terms of how things are affected.

Crista Ellis 01:01:25
We got another question from one of our members asking, which of my doctors do I ask which question? Let's talk about anxiety, let's talk about constipation. What about urinary issues? What about movement issues? Kathy, you really hit home on this: ask the questions, right? We don't necessarily have to distill or filter the questions based on the provider of a certain specialty. What I'm hearing is that it's important to communicate all of it to our providers. Is that an accurate statement to make?

Dr. Kathleen Blake 01:01:59
I think it's accurate, but don't be offended if someone says that's really outside of my area of expertise. What you want them to say is, and I will talk to Dr. so-and-so if you've already seen somebody for that condition. Or they will say, I will refer you to someone who can address that condition. The worst thing in the world is to leave somebody hanging.

Do not say, oh, I don't deal with that stuff. We all want to be treated as whole people, just as Taylor said. We're not just the sum of our parts.

Dr. Muhammad Nashatizadeh 01:02:48
I very much agree with that. I think that a lot of times when people are going through medical training, we're taught to stay in our lane, and this is your area and what is your scope of practice. But some of the most effective healthcare providers are people who actually incorporate the related areas with your care.

I think most people who have that additional training in movement disorders, who are movement disorder specialists, it's pretty routine for them to try to not only ask about and look into non-motor things, mood issues, sleep issues, cognitive issues, but also to know how to manage and treat those things. Even things like orthostatic hypotension, which I would say most neurologists would defer to cardiology to manage, is an area that a lot of movement disorder specialists are familiar with. Don't be afraid to ask those questions.

But I also know there are many movement disorder specialists who will refer people to those other specialists. It's not uncommon for somebody with Parkinson's disease to have a psychiatrist or a GI specialist or somebody who can really help when things are more challenging. That's just expanding your list of people who are able to help you as part of your personal healthcare team.

Crista Ellis 01:04:06
Taylor, I saw you go on mute and was just curious if that thought is lingering.

Dr. Taylor Rush 01:04:10
I was just in case I forgot and then started speaking, so more preemptive than anything.

Crista Ellis 01:04:20
We just started touching on the non-movement symptoms, and one of our members here is asking us to speak to the more psychological and emotional side of Parkinson's. Ilana, I'm sorry if I'm not saying your name correctly, but they write in: it seems like most of the care for PD patients focuses on the physical symptoms, tremors, stiffness, and balance. What or where is the best place to seek support for a person whose symptoms are more strongly psychological and emotional?

I'll ask this question in two parts. What is the impact of the non-movement symptoms in Parkinson's disease, and how do we get the right support for those non-movement symptoms?

Dr. Taylor Rush 01:05:05
I'll start. I would say that the impact is significant because if you are struggling with anxiety or depression, it does affect how you're then able to engage your treatment plan. You may forget to take medications, you may not then adhere to recommendations for physical therapy or exercise or other things. It's pervasive. Mood should certainly not be discounted or minimized because it's not a motor symptom, because it affects motor symptoms. It affects quality of life and relationships and functioning.

I would say that, to start, I would bring it up with your neurologist because, yes, they may not be specifically trained in treating mood and anxiety disorders, but I can guarantee you they know about them and they do encounter this on a regular basis. From there, it allows a platform for people to get referrals to the right resources, whether it's a psychologist, a social worker, a psychiatrist, so that they can then get the specific help that they need on those ends of their care.

Your neurologist may be much more motor-centric in terms of their exam, but it doesn't mean that those other pieces aren't relevant. It just may be something you have to drive a little bit more assertively.

Crista Ellis 01:06:38
Thank you, Dr. Rush.

I want to ensure that we address this question from Jean, or more of a statement, and perhaps we can have a dialogue around it. They share that my movement disorder specialist gets frustrated if I ask questions. He prefers to give a monologue on his own concerns, which seems to be what he thinks I may need to know. Sometimes he's correct, but often he misses the mark. After appointments, I'm usually frustrated and upset. I'd like to change this, but I don't know how.

Dr. Muhammad Nashatizadeh 01:07:15
Your concerns are not alone. You're not alone. This is why one of the things I'm very honored to be a part of is trying to recruit young bright minds and find people who are caring, people who are good listeners, to try to recruit them not only into neurology but into movement disorders.

You can have people who have knowledge, but I would say very generically, anytime you have any type of a relationship where there is a lot of emotional frustration, and especially when you think about working with a healthcare provider, people don't love to have to go see somebody and ask for help in many situations when they're struggling with something.

If they're already in that situation where they are now having a healthcare provider who's actually, in no uncertain terms, adding to the emotional frustration and problem, and then the provider also seems emotionally frustrated by what's going on, now you have two people in a relationship that is essentially dysfunctional. Because there's a shortage, many people tolerate this and they say, well, I would much rather be in a bad relationship than no relationship at all.

But in the end, people often have to make difficult decisions. Sometimes, rather than just saying abandon ship, sometimes having a very direct discussion about that. You know, I've been coming to see you for a while now and I just want you to know, I could really tell that you seemed frustrated by some of the questions that I asked.

Just like how, Crista, the way you were like, did I reflect this accurately? Continue to build those bridges of communication. It may be that that provider does care and is a helpful and kind person, but maybe is having a bad situation, and maybe it's just with you or maybe it was just with you that day. Maybe they can reflect, because you're reflecting back to them, that they need to come across more effectively. Rather than to just say, all is hopeless, you need to get a different person to care for you, build that bridge and be the bridge. Hopefully that person will recognize that and tone it down, walk it back a few steps, maybe even apologize for how it came across and reassure you that yes, I do want to help you, yes, I think I can help you.

But sometimes when I hear that people want to just have a monologue and do 90% of the talking, then that may be a personality type. Not every healthcare provider is every patient's cup of tea. When I first started and I was new in my community, people often said, you know, I've already been to one or two other neurologists and I didn't like how it went. My first question is, what is it that you need from me that I can try to be that person? Maybe I'm not able to be that person, but being able to have that communication and to manage those expectations, being very clear with them to say, this is what I need. I don't like how this went. Rather than tiptoeing around the issue, be direct. And that's hard.

Dr. Kathleen Blake 01:10:24
I would also say that there are perhaps better ways to have this conversation than if you come out like guns blazing with lots of anger and frustration. That is going to cause that person to withdraw, probably even further. Being able to come forward with statements like, "My relationship with you is really important. I really value it. I want it to work."

Then the we statements, you know, how can we make this work? What do you need from me to be able to get it working better? This is partly, though, where having that companion with you. If you yourself just don't have the wherewithal to say things like that, perhaps the companion who's come to visit after visit can say it for you.

Dr. Taylor Rush 01:11:34
I would just say logistically in terms of how you start the appointment, I tell patients sometimes, go on the offense. Give them that list. Give them the things that are important to you at the outset of the appointment so it's not them coming in and saying, okay, we're going to talk about XYZ today, and then before you know it, they're out the door in a blur. You give them that list up front so that they are very explicitly aware of what it is that you want to talk about that day. Sometimes that can help shift the dynamic a little bit. It's worth trying in order to maybe help advocate for your own needs up front.

Crista Ellis 01:12:16
It could be such a useful tool, Dr. Rush, to have it written, right? It removes the emotional or even the anxious side of things of having to say, this is what I need in our relationship for it to work.

Here's a piece of paper that says all these things, so that charge of emotional reactivity or defensiveness is really lowered. I really appreciate that suggestion. Being respectful of our time, Taylor, Kathy, Dr. Muhammad, thank you so much for sharing your expertise with us, for helping build this content and bringing awareness to the importance of being an advocate before, during, and after our appointments with our providers. Any final words to share before I close this out?

Dr. Kathleen Blake 01:13:05
I want everybody to share this recorded webinar with everybody they know who has Parkinson's and with their care partners. That's our goal, that it touches as many people as possible.

Crista Ellis 01:13:21
Thanks, Kathy.

Dr. Muhammad Nashatizadeh 01:13:24
Continue to be organized. Organization is a process itself. You can become more and more organized and do things in a different way. I think the strategies that we heard today can be very useful for people. Thank you very much for organizing this and for having all of us today.

Dr. Taylor Rush 01:13:42
Make sure that you value your own needs and recognize how important they are because this is your life and this is your ability to care for yourself in the best ways possible.

Dr. Kathleen Blake 01:13:55
We're here.

Crista Ellis 01:13:57
Share the resources, continue to advocate for yourself. This is your life, it's your time with your doctor, and make it worth the time. I really appreciate you all for showing up today, and thank you all for continuing to show up in a way that's allowing the Foundation to support you in a meaningful way. We're truly grateful to our experts, Dr. Taylor Rush, Dr. Muhammad Nashatizadeh and Dr. Kathleen Blake, and for each of you for being part of this important conversation. We hope today's program inspires you to take an active role in your Parkinson's care and to feel more confident heading into your next healthcare visit.

As you reflect on what we've covered, we encourage you to think about how you can take charge in your own care journey. Talk with your care partner, family members, friends, colleagues, peers, or even your support or exercise group about ways to become more engaged. And let me remind you, these are skills, right? It takes time to develop. Communication, strategizing and preparing do take time, and they do take effort. Be gentle with yourself as you build, like the muscles, as you build these skills in your own rhythms of your life. Sometimes it's the smallest step, like writing down a question in advance, that makes a really big impact.

Remember, self-advocacy is something you can build over time and you don't have to do it alone.

We also want to make sure you have the tools to take action. You can visit Parkinson.org/HealthCareVisits to download the preparation worksheet Dr. Rush shared with us, along with other helpful resources. These tools are designed to help you organize your thoughts, prioritize your concerns, and walk into each appointment feeling more prepared and more empowered.

We'd love to keep the conversation going. We're considering starting a thread on PDConversations.org focused on self-advocacy and healthcare visits. It's a space where you can share your experiences and also learn from others. If this sounds helpful to you, we'd love for you to join us on PD Conversations and be a part of the discussion.

Before we wrap up, just one last favor to ask of you to continue to fuel the programs at the Parkinson's Foundation. Your feedback is essential in shaping these programs. As the webinar concludes, a survey will pop up on your screen. Just take a moment, a minute, maybe three minutes, to share your thoughts and let us know what topics you'd like to see in future sessions.

We had beautiful questions shared in our dialogue today and some weren't answered. Please know that our Foundation is here for you. Call the Helpline to get those questions answered. The number's on the screen for you. Or if you're looking for guidance on preparing for your next appointment or just want someone to talk to, our Helpline specialists are a phone call or an email away. Together we can navigate this path and continue building a brighter future. Thank you again for being with us. Take care, take charge, and be well.