Dan Keller – 00:00
Welcome to the debut 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.
Dan Keller – 00:50
Today, we're talking about early warning signs of Parkinson's with Dr Michael Okun, Chairman of the Department of Neurology at the University of Florida College of Medicine in Gainesville and Medical Director of the National Parkinson Foundation, a division of the Parkinson's Foundation. We reached him by phone, and in that conversation, he offered practical advice on how to proceed after a diagnosis, as well as hope for all people affected by Parkinson's. Welcome.
Dan Keller – 01:21
Dr Okin, what would you say are some of the early warning signs of Parkinson's disease that people should be looking out for?
Dr. Michael Okun – 01:30
The early warning signs of Parkinson's disease, we've begun to understand more than we did in the past, and so people used to focus exclusively on tremor, and tremor actually does occur in four out of five patients with Parkinson's, but that means one out of five don't have tremor. So you can miss it if you look at that motor feature, and people have had a tendency to focus on stiffness or rigidity and slowness or in shuffling of their steps. But what I can tell you is that we now understand that the early symptoms may be things like acting out your dreams, and we call that REM sleep behavioral disorder. So that's very common, constipation, a loss of a sense of smell, and in some patients, even depression and some behavioral features may be the emergent early symptoms. And so we have really broadened our definition, and we think much more widely about the early warning signs.
Dan Keller – 02:30
How concerned should someone be about these? These don't seem to be specific.
Dr. Michael Okun – 02:35
Well, I mean, I think that's one of the things that we need to do a better job of educating the public, and that is, though, these are early warning signs of Parkinson's. They're not specific to Parkinson's, so it's possible, for example, that you may lose a little bit of your sense of smell or have constipation with other diseases, although this acting out of your dreams is very common in Parkinson particularly in older age groups, and so we shouldn't ask patients to make those decisions as to whether or not these are the early warning signs of Parkinson's disease. What we should do is educate them that these are possible signs and make sure that they're checking in with a neurologist or someone with some expertise in Parkinson's or movement disorders to help them to sort that out. And so we certainly don't want them to be alarmed if they see a singular symptom.
Dan Keller – 03:29
Are the symptoms generally singular in the beginning, or do they come as a constellation or combination?
Dr. Michael Okun – 03:35
Well, what happens is, is that beginning with any type of neurological problem, each person is going to focus on one aspect, and that may be the aspect that brings them to the attention of an expert clinician. And usually, what the expert clinician is going to find is a series of things, both in the history and on the examination, that may not have been appreciated by an individual patient or family member, but may be important to the syndrome.
Dan Keller – 04:07
So usually, where there's smoke, there's fire, is there any definitive test once someone sees a Specialist?
Dr. Michael Okun – 04:11
Today, the gold standard of diagnosis is really a good clinical examination by an expert clinician or somebody who's very experienced in treating patients with Parkinson's disease and a trial of a dopaminergic therapy to look for response over time. So over the course of a year or two, this is still the gold standard of how we diagnose Parkinson now there are some new tests, so there's an FDA approved test that can help to differentiate Parkinson's from a commonly misdiagnosed entity called Essential tremor, and that's called a dat scan, or a dopamine transporter scan, and so that can be used, but again, that's not diagnostic for Parkinson's. It's only approved to separate it from essential tremor. There are advanced PET scans, and the PET scans may measure something called fluoridopa or glucose metabolism. And these types of scans are complex, and they need to be interpreted and run by true experts in the field to have any meaning for diagnosis, because again, the specificity may not be appropriate for an individual patient, but they're certainly very good in terms of diagnosis and research. And then there are several new MRI based approaches and blood tests and other things that are in various aspects of clinical trials and in various stages of development that we hope will help us to get what we call a biomarker, not only for diagnosis, so telling if you're going to have the disease, but a biomarker for tracking the progression of the disease, because at some point we may want to give you a therapy, or we may want to try to give you something that we think is going to delay the disease, and we're going to need to be able to measure it. And so there's a lot of work going on in both trying to develop something beyond the clinical examination and response to dopamine types of drugs for the diagnosis, but nothing definitive at this moment.
Dan Keller – 06:15
So it sounds like the most practical thing today would just be a drug trial, having a person try out one of the anti Parkinson's drugs?
Dr. Michael Okun – 06:25
Well, I wouldn't say that the most practical is just to have a drug trial. I think that it's most important to have an examination using something like one of the tools that's been developed and refined by the movement disorder society, the unified Parkinson's disease rating scale, and now there's a new one through that society, using that kind of tool to both look for features of parkinson on history and on examination, and follow those over time. And then, when you give a dopaminergic therapy, see how the person responds over time and be sure that you have the diagnosis correct, jumping to a definitive conclusion too soon has been an area where some expert clinicians and non expert clinicians have gotten into trouble. And so you know, one of the good old fashioned tenants of Parkinson's disease in the clinic is just making sure that you continue to follow those patients and those family members over time and make sure that you've got the diagnosis correct and you've got the response to treatment Correct. We've learned a really important lesson recently in that a number of patients, 15% or more that are enrolled in Parkinson's disease early clinical trials. That means, when you have your first feature or two, that you get enrolled quickly into a trial of maybe a drug or a therapy they think might slow disease progression. And as part of those trials, several of them use the dopamine transporter imaging to look at the abnormality of dopamine in the brain, in an area of the brain called the putamen, and what they found was 15% or more of patients may not have had a dopaminergic deficit, suggesting that several of the patients who present with a symptom or two of Parkinson's disease may not actually have Parkinson's and so they call those cases sweats or scans without evidence of dopaminergic deficiency. I don't like that name of the syndrome. I don't think you want to call somebody a sweat. It's just a scan. But this suggestion, what it's telling us is that just because you have an early symptom that may look like Parkinson's doesn't necessarily mean that you'll progress like Parkinson's and end up with a dopaminergic deficit. And so I think the lesson there is to make sure we're following patients carefully and longitudinally in the clinic, and that we get it right, and that we admit and we be humble as a profession, that we might get it wrong, and the best way to get it right is to continue good old fashioned medicine, seeing people in the clinic on regular intervals and making sure that we've got the best treatment and that the diagnosis is accurate.
Dan Keller – 09:12
It sounds or the inference I make here is that anti Parkinson's drugs might be started very early if someone is presenting with symptoms that are not really motor symptoms, would these drugs affect those things like constipation or the sleep disorders or anything like that, or are they worth starting just because they would stave off or delay the disease?
Dr. Michael Okun – 09:37
Conventional wisdom and dogma in the field has been that when you start dopaminergic therapies or medication therapies for Parkinson's disease, that they're only focused on improving the motor symptoms, tremor, stiffness, slowness and these types of features, maybe walking early on. What we found out over time. Is that this may not be true. We even have some patients who don't think well when they're off of their dopaminergic medications, some patients who get depressed, or who get what are called non motor offs, or even non motor fluctuations when the dopamine or dopaminergic therapy is wearing off before the next dose, they may get anxiety, they may get depressive symptoms, and then a lot of the patients will have apathy as well. And so non motor symptoms and fluctuations in non motor symptoms as well as motor symptoms, may be affected by dopamine medications, and it may be most prominent in between dosages, and we often miss this and don't think of it as clinicians. And so it's really important to remember that some of these symptoms in individual patients may be quite responsive, and that as people are having fluctuations, shortness of breath is one of the ones that is my favorite to teach the students about, because people jump and think, oh, there must be something wrong with the lungs, and it may be anxiety or wearing off before the next dose. And so when we see depression or thinking problems or other things that we haven't conventionally learned from textbooks and from medical school and from residency training that suggests to us that, oh, this may not be Parkinson or Parkinson related medication issue, we need to take a step back, pause and be sure that we have adequately addressed the patient and made sure that that particular symptom is responsive or unresponsive to the dopaminergic medication
Dan Keller – 11:43
before I let you go. Can you give sort of a capsule summary or capsule message to someone who may be experiencing what might be an early symptom of Parkinson's?
Dr. Michael Okun – 11:54
The Message that I would give to anybody who thinks they have an early symptom of Parkinson's is don't panic. Seek out a medical professional that either has a lot of experience with Parkinson's disease. Might be at a center of excellence, or might have just seen a lot of patients, or in their practice, they have a large percentage of patients with Parkinson's seek people out that are willing to spend time with you. These things take time to sort out, both in the first visit and in follow up visits. And don't panic, Parkinson's disease as a diagnosis is not a death sentence, and we have patients that live 1020, 3040, years or more and do well with Parkinson it is not one disease. It is multiple diseases with similar manifestations, and those similar manifestations cause people to clump them all into one, and it's not a one size fits all. And so it's really important to realize that the outlook for most of our patients is going to be good. It's going to be long term, and you're going to need a strategy, both in the short term and in the long term that's going to lead to success and lead to a hopeful and happy life.
Dan Keller
Very helpful information. Thank you.
Dr. Michael Okun
My pleasure, Dan.
Dan Keller – 13:16
I hope you enjoyed my conversation with Dr Michael Okun, and that you will talk with your care team about what short and long term strategies you can put in place to fight the disease. The National Parkinson foundation is studying best treatments and care to help you on your journey through our Parkinson's outcomes project, the largest ever clinical study of Parkinson's almost 10,000 patients are enrolled, including many who've had Parkinson's for more than 10 and 20 years. We're studying their outcomes and the care they are receiving to see how they have been so successful in managing the disease. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's to live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series twice a month. Coming up in our next episode will be a conversation with our own Dr, Peter Schmidt, giving an overview of the work and vision of the national Parkinson Foundation, a division of the Parkinson's foundation. Till then, for more information and resources, visit parkinson.org or call our toll free helpline. One 804 PD, info, that's 1-800-473-4636 a resource you may find particularly useful after today's chat with Dr Okun, is our free book Parkinson's disease. What you and your family should know available in the shop on our website. Thank you for listening.
