Dan Keller 0:02
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Managing Parkinson's disease is a team effort involving healthcare providers, the person with PD, and their supporters. These team members often come together at a doctor's visit, and to make the most of a visit, a plan can help. In this episode, health psychologist Dr. Taylor Rush of the Center for Neurologic Restoration at the Cleveland Clinic offers some suggestions in planning for the visit, talking with your doctor, and what to do between visits. She also has some advice for overcoming obstacles if they arise in discussions with your doctor. When we spoke, I first was curious about how a psychologist comes to work in the Parkinson's area. Dr. Rush, let me first ask you a little bit about yourself and what led you to work with people living with Parkinson's.
Dr. Taylor Rush 1:39
I'm a health psychologist by training, meaning that my school work in grad school and training was done in hospital or outpatient health settings, and I was asked to start a behavioral health service within our movement disorders center at Cleveland Clinic, as they had not had that service available up until that point. So I was very happy to oblige, as I knew that psychological support for the Parkinson's journey is such an integral part to successful management. So, from there, that was 10 years ago now, I was able to build a service line that now includes two other health psychologists, two social workers, two psychiatrists, as well as a psychiatry physician assistant. Our goal is to address the psychological and neurobehavioral needs of our patients who have Parkinson's.
Dan Keller 2:33
That's great. It sounds like you have a much more highly staffed and better facility than a lot of places would.
Dr. Taylor Rush 2:41
We're incredibly lucky. Absolutely.
Dan Keller 2:45
Let's talk about how people can make the most of their Parkinson's doctor visits. Why do you think this is such an important topic?
Dr. Taylor Rush 2:55
I would say that this is a topic that comes up often when I'm working with patients as they recognize that these visits are often incredibly short and often there's a lot that they want to discuss during a very limited amount of time. So they feel a sense of pressure to be as efficient as possible, but aren't always entirely sure how, and often they may leave appointments feeling like questions were not addressed, or perhaps they forgot to ask them. I think historically there has been this belief that the doctor knows best, so a lot of people come into visits expecting the provider to structure the time and make the best use of it, but really it ought to be a more collaborative exchange with what's concerning to you as a patient, as well as what maybe the provider notices in terms of their exam. So it's not just one perspective, it's both of you bringing your ideas and your observations to the table. And when an appointment ends without covering what matters most to you, it means that you might have difficulty for the next—sometimes upwards of six months—before your next appointment to really initiate a plan that's going to work most effectively. So, it's incredibly important to make sure that you feel empowered and prepared for these visits.
Dan Keller 4:23
What's a good way to start for someone to take this more active role in their own care and dealing with that doctor's appointment that often has limited time?
Dr. Taylor Rush 4:36
I would say that first off, preparation is absolutely key to a successful visit, so I will often encourage people to really take time to reflect before the visit on understanding where you are, you know, what's going on with your symptoms. What are any particular concerns or challenges that you might be experiencing? And those can be physical challenges, sometimes they're emotional challenges, and how are they affecting your quality of life, and really trying to hone in on what you feel like needs to be addressed in order to enhance any personal goals that you have.
So I have patients that will say, "I'm really having trouble with stiffness, and it's affecting my ability to play golf," or, "My balance has been more of an issue lately, and so my ability to garden has been really affected by this," or, "I'm having an incredible amount of fatigue, and so time with my grandkids has become much more limited," or, "My tremor has gotten to a point where I'm really self-conscious, and I'm not going out socially as much as I used to." So, how can you link the concerns that you have with the things that matter most to you in your life? And coming into the appointment with those concerns outlined can really help to make use of that time as best as possible.
Dan Keller 6:07
I know doctors sometimes get frustrated by what they call the "door handle symptom"—you know, the person says at the end of the interview, just as they're just going out the door, "Oh, and by the way, I have this other troubling symptom," which is fairly major. So I guess it's a good idea to get that out up front and not hold back.
Dr. Taylor Rush 6:28
At the end of the visit, or when they're walking out the door, how can the patient make sure that they understood everything that was discussed? You know, it's a stressful situation, and they may be thinking of their next question. How do they make sure that something didn't get by them that's important?
Dr. Taylor Rush 18:45
It can be helpful to take notes during your visits, being able to write things down as you go, making sure that it seems to make sense. And sometimes it's okay to take a pause and say, "Okay, so let me make sure that I understood you correctly with what you just said." And that way you can then reflect back what you heard them say, and then they have an opportunity to say, "Oh, yes, you've got it, that's exactly what I said," or they can say, "Oh, well, not quite. You know, actually I meant this." So it provides an opportunity for clarification, and you can also perhaps ask the provider to summarize the visit and send it to you through the patient portal. We have providers who will do that routinely, where the visit summary is sent to them automatically, or they can print it so that the patient has a hard copy of it as well. So, I think that sometimes clarifying exactly what you discussed can then help to prompt any other pieces that may need to be clarified or better understood in order for you to leave that appointment feeling as if you're on the same page as your provider with your care plan.
Dan Keller 19:54
Does it help to bring your care partner or some other extra set of ears with you?
Dr. Taylor Rush 20:01
Absolutely, I think if you have someone that can come—so whether that is a care partner or sometimes a trusted friend or other individual who'd be willing to sit in on the appointment with you—two sets of ears can be more helpful than one, so that is definitely one option to consider. Another—and this kind of depends on the rules of the practice, as some places have policies in place against this—but I know in our center, some of my patients will audio record visits on their phone because they're like, "I just want to make sure that I can go back and listen to this again and make sure I really understood and absorbed everything." And so if you're allowed to do that, that can also provide an opportunity for you to have a reference point for your visit, as long as it's something that is acceptable for their practice policies. So those are a few options, even if you don't necessarily have a care partner that could come to the appointment.
Dan Keller 21:07
And I suppose if you didn't have a care partner with you and you did record it, somebody else could listen to it with you later, to make sure that you're getting it right.
Dr. Taylor Rush 21:17
Yes, and I've had people who've actually called in people that are in their life—so they may have had an adult child who lived several states over, who can't come to the visit, but they will call them so that they can be a part of the visit over the phone. So that can also be an option as well.
Dan Keller 21:35
Great. As we wrap this up, is there anything we've missed or interesting to add, and can you give a nutshell message to people who are going to be at a doctor visit?
Dr. Taylor Rush 21:48
Absolutely, I would just say that again, remember that your medical visits are your time to speak up and make your needs known. The time is yours to be able to offer your thoughts, your perspective, share your values with your provider on what's important to you. And again, the more you can prepare ahead of time by writing things down using the preparation worksheet offered by the Parkinson's Foundation, the more efficient and productive your time will be with your provider, which means better care as well as a better treatment plan that you can enact between appointments. So use your time wisely and make sure that you get your needs met.
Dan Keller 22:34
And I suppose that time between appointments when something occurs to you, it's probably a good time to write it down. Then, I know all of us are so busy, we get a thought, and then it's like, "Oh, damn, what was I going to write down?"
Dr. Taylor Rush 22:48
I know, exactly. And so I tell people, if it's something that takes less than 30 seconds, do it in that moment, do it right then, because otherwise you're right, it's in one ear and out the other. So, as things come up, have a pad of note paper handy, or I have a lot of people who use the notes app on their phone, because most people have their phone with them all the time. So, whatever helps you to prompt that observation or question, use it in that moment, so that you have it to reference later.
Dan Keller 23:20
Very good. Thanks a lot for all the helpful suggestions. I'm sure people will have more productive visits because of this, and they should get the worksheet too. So, thanks. Take care.
Dr. Taylor Rush 23:32
Thank you so much. Bye.
Dan Keller 23:43
To help you make the most of your care, including doctor visits, we have lots of information on our website at parkinson.org/optimizingcare. An important part of getting the best care is being able to advocate for yourself, including letting your healthcare team know what's important to you, your symptoms, concerns, goals, and what matters most to you. There's a link on the webpage to the worksheet that we mentioned to help you organize your thoughts to make the most of your time with your doctor. We also had a recent webinar on this topic; visit parkinson.org/pdlibrary and search for "taking charge."
If you'd like to leave feedback on this episode or let us know what other topics you'd like us to cover, visit parkinson.org/feedback. Be sure to subscribe and rate us on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.
