Dan Keller 0:00
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. When someone receives a new diagnosis of Parkinson's disease, it can be hard to deal with, especially if the person has doubts about the diagnosis or experienced a less-than-fulfilling encounter with the physician delivering the news. If so, it can be well worth seeking a second opinion from a movement disorder specialist, which can lead to a confirmation of the diagnosis or can determine a different cause of symptoms. I spoke with Dr. Carlos Singer, Director of the Division of Parkinson's Disease and Movement Disorders at the University of Miami. He explained the value of a second opinion, and he laid out reasons for seeking one, how he approaches such a visit, how people process the news of a diagnosis, and a few options for follow-ups after the visit. What can you tell me about the value of second opinions and how you go about getting one?
Dr. Carlos Singer 1:41
The value of the second opinion is because questions may have been left unanswered or there may not have been the most ideal patient-physician interaction such that the patient will be comfortable with, let's say, closure to the issue of diagnosis.
Dan Keller 2:01
So the patient may walk away with as many questions as they came in with, or more?
Dr. Carlos Singer 2:04
Or more. They may have come in thinking that they have, hopefully, let's say, a tremor of minor significance, and leave the medical office distraught.
Dan Keller 2:17
So what are some of the kinds of things that they can either pursue or that they should be referred to?
Dr. Carlos Singer 2:25
So they have the option of a second opinion with a neurologist if they have already had a first diagnosis by a neurologist that has not been satisfying. That second opinion with a neurologist should be somebody who specializes in Parkinson's disease, as we say, Parkinson's disease and movement disorders. That's the general name of the field. So when I meet with patients who are coming for that second opinion, in my mind, there are three stages to that encounter. The first two steps of that stage is what I call the preliminary. The preliminary is to establish an understanding of the reasons for the request for a second opinion. I like to know what happened. Were they happy with the visit? It frequently comes out right away. Let's say that the diagnosis was rendered in an abrupt or hurried way, or that the reasoning for diagnosis was not clearly outlined. And secondly, I want to establish what questions already the patient brings into the encounter, and it may be questions regarding prognosis, what is the treatment plan, what are the genetics of Parkinson's. So I already have an idea, more or less, of what will have to be played out to the patient's satisfaction. The center stage is the history and physical examination, which we all have to do; I don't have to elaborate. We're all trained for that. After I am done with the history and physical examination comes stage three. Stage three means rendering the diagnosis. It follows certain principles. First of all, when you render a diagnosis, I at least explain to the patient what I have found on my history and examination. I give a summary. I may even say it even before I say, “You have Parkinson's disease.” I may say, “This is what you told me, and this is what I find on exam,” and I go over things that the patient has just lived through with me. Once I finish those steps, then I give the diagnosis. Let's assume that my diagnosis is Parkinson's. So I acknowledge the importance of that diagnostic moment. It's a particular moment. I acknowledge the diagnosis of Parkinson's is serious, but it doesn't have to be bleak. We're not talking about something fatal. I say there's a lot of life with Parkinson's and after Parkinson's. So it is important to acknowledge the diagnostic moment. Once the diagnostic moment is acknowledged, then one has to acknowledge that the patient, regardless of the fact that the patient is already seeing a specialist, needs to be given the chance to assimilate it. So even if the patient knew that the word Parkinson's existed already, that it had already been given to them, they still now that they're getting this final opinion need time. It's different. At a cognitive level, they understand what you're saying. At an emotional level, it's different. They need to internalize it. They need to be given time, and you acknowledge that need for time, which means that they are not obligated to leave my office with the diagnosis already fully assimilated and internalized. There is an acceptance that some time may be needed. In addition to that, I have to acknowledge that additional questions will be asked by the patient later on. As soon as they leave the office, they may have a number of questions that they forgot to ask me or would like to know. So I already tell them in advance, I know questions will arise, and therefore this is the phone number which you can call, and we can talk it over the phone, or we can see you at the follow-up visit. And the final step is to offer a follow-up visit if they need it, be it to go over the questions again. If they are leaving with some sort of treatment plan, they will need to be seen to see how they reacted to medication, or simply to discuss treatment at the subsequent visit. So that's basically the steps that I follow that I think are proper in the context of a second opinion for somebody who is just diagnosed with Parkinson's.
Dan Keller 7:04
Now, you said there's a time for them to assimilate the diagnosis emotionally, besides the cognitive understanding of it. I mean, they go away and do this. This is a process that sinks in. They don't just need five minutes in the office more, right?
Dr. Carlos Singer 7:18
Right. I tell them, you may need a few days, you may need a few weeks. I say you may need a couple months. I say it's fine. There is no urgency with Parkinson's for treatment. Part of the treatment is to assimilate the diagnosis, so let's go through that first. Sometimes the patient is ready. Once they've heard the diagnosis, they're ready to talk about treatment. If they're ready, we start talking about treatment. If it still needs time, that's fine. Time is given.
Dan Keller 7:55
Now, do they stay with you, or are they referred back to their original neurologist? If they have a movement disorder, you're probably the place to be. You don't want to steal somebody's patient.
Dr. Carlos Singer 8:06
So there are a variety of scenarios because some patients come from a distance and may not be as interested in such close follow-up. They may need an extra follow-up visit just to tidy things up, but then they can be let go for a number of months. They can go back to their community neurologist. They can call on an as-needed basis. A follow-up visit can be given. So I provide a variety of choices as to how they want to proceed. But when they're early Parkinson's, as a rule, you don't need very close follow-up.
Dan Keller 8:48
This is bread and butter for neurologists.
Dr. Carlos Singer 8:50
This is bread and butter for neurologists. I am perfectly comfortable with the notion of preparing a full letter with recommendations, what stages, what steps should be taken for treatment, what plan I've suggested to the patient, and let the community neurologist take it from there, and leaving it up to the patient if they want to call back, maybe be seen in a number of months, and so on.
Dan Keller 9:14
Now what if someone comes in and they have Parkinsonian symptoms, but it turns out not to be Parkinson's disease? Does that go back to the neurologist, or do you handle it?
Dr. Carlos Singer 9:24
It depends. It depends on how complicated things are. You get a sense. If the problem is complicated, you know that you will have to take care of it yourself and set up follow-up visits. But there is a whole different issue, because sometimes the diagnosis you have for the patient is more benign. Sometimes the diagnosis is more serious. A more benign case can be a medication causing tremors; you stop the drug. Whereas in some cases, you have to tell them, “Well, you don't have Parkinson's, but you have something we call Parkinsonism-plus.” And I say when you hear the word “plus,” that's not good. It's more complicated. I need more time to explain. So all of that plays itself out, but those usually end up needing a bit closer follow-up.
Dan Keller 10:18
Very good. I think you've encapsulated it well. Thanks. You can find more information about second opinions on our website by searching “second opinion” in the search bar, where you'll discover a variety of resources on finding and choosing a doctor, as well as stories from people who describe their reactions and approach to a PD diagnosis and what they found when they went for a second opinion visit at parkinson.org/newlydiagnosed. For the Parkinson's Foundation advice for the newly diagnosed page highlighting over a dozen useful pages, including “I've Got Parkinson's, Now What?” and “Getting the Support You Need,” and more. As always, PD information specialists are available on our toll-free helpline. They can answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. 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 other week. Till then, 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.
