Dan Keller 0:09
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. early symptoms of tremors at rest, stiffness, slow movement and unstable posture often indicate Parkinson's disease, but they are also characteristic of a group of conditions broadly known as Parkinsonism, also called atypical Parkinson's disease or Parkinson's plus. these conditions tend to progress more rapidly than Parkinson's disease, and they may or may not respond to levodopa and possibly show only modest benefit. I spoke with licensed clinical social worker Paula Wiener, a senior Parkinson's Information Specialist with the Parkinson's Foundation. she routinely fields calls from people to the foundation through the Parkinson's Foundation helpline, and one topic that comes up is the difference between Parkinson's disease and parkinsonism.
Paula Wiener 1:39
Parkinsonism is the term used to describe the symptoms that we classically associate with Parkinson's, the resting tremor, the slowness of movement, muscle stiffness or rigidity, and a change in gait or balance. When I say Parkinsonism, I'm talking about those symptoms, but I haven't really told you what's causing those symptoms.
Dan Keller 2:07
So in the early stages, what's a person to do? How do they either get a label of one thing or no label at all?
Paula Wiener 2:16
Well, this can be hard on people, because they are told they have Parkinson's, and they want to know, do I have Parkinson's disease? What are you really saying? Unfortunately, all of these diseases, the Parkinson's, they can be kind of tricky, kind of sneaky. They can look like one thing when they start up and they can progress to something else. So sometimes we just have to be patient and wait to see how the disease rolls out. In some cases, you will end up getting a diagnosis of Parkinson's disease. In others, you may get a diagnosis of one of the what we call atypical Parkinson's, which are things like progressive supranuclear palsy, dementia with Lewy body, corticobasal degeneration or multiple system atrophy. Unfortunately, for some people, they will never get a specific diagnosis of what's causing their symptoms, because they don't have the hallmarks of a specific disease. So the doctor will never really be able to say anything more than Parkinson's. To get the definite and definitive answer for those people, we would have to go to brain autopsy at death.
Dan Keller 3:42
What's the definitive point in making the Parkinson's disease diagnosis?
Paula Wiener 3:49
The line in the sand is your response to carbidopa levodopa, brand name Sinemet. If your symptoms have a strong response to that medication and they continue to have a strong response, then we can be pretty gosh darn sure that you have idiopathic, plain old garden variety Parkinson's disease. Some people's symptoms will respond early on, but as time goes by, maybe six months, maybe nine months, maybe a year, their symptoms aren't really responding, and even if we up the dosage, we're still not getting a symptom response. Now we switch them to Parkinsonism.
Dan Keller 4:32
Okay, even though they had responded to L-dopa,
Paula Wiener 4:37
yes, but they didn't have a sustained response.
Dan Keller 4:40
Okay, so what happens to those other people who don't really have Parkinson's disease, and they've called the Help Line at the Parkinson's Foundation, what do they do next? Or what do you do next?
Paula Wiener 4:55
Well, if they do get a definitive diagnosis, there are foundations for each one of those that I mentioned earlier, and we try to get them in touch with those folks, because each of those organizations have helplines that are more specific to their diagnosis. The folks that have Parkinson's that we can't quite pinpoint what's causing the symptoms, we continue to support them with answers to their questions, suggestions for talking to their neurologist or movement disorder specialist. We always try to get folks to a movement disorder specialist, because these Parkinson's are rare. They only account for about 10% of all folks with a parkinsonian disorder, and the movement disorder specialist neurologist is best qualified to give you the strongest diagnosis that you can get. But even those ladies and gentlemen may only be able to say Parkinsonism at some point.
Dan Keller 6:00
Do some of these Parkinsonism's reveal themselves later to be something specific?
Paula Wiener 6:07
They may, but by and large, no, they will go on being indefinite. My dad had one of these, and it was very, very frustrating. The movement disorder doctor that diagnosed him is also the one that taught me everything I know, and when he passed away, she still couldn't definitively say which one he had, because he never showed what we call the cardinal or diagnostic signs of a specific one of those diseases. And this is really hard to understand. Believe me, people call all the time, and we talk about it at length, and I try to help them understand that, as much as science and modern medicine knows, there's still a lot we don't know.
Dan Keller 6:57
If someone has a Parkinsonism, which is not diagnosed as Parkinson's disease, and you can't put your finger, or their neurologist can't put their finger on exactly what they have, where do these people turn for help? Do they stay with you, or are they just left adrift?
Paula Wiener 7:17
Most of them will continue to see their neurologist to some extent. You have to understand that we don't have any medications for these diseases. We try levodopa, because if the symptoms are going to respond at all, they will respond to levodopa, even if it's just a tiny bit. If there's dementia involved in the progression, we'll try some of the dementia drugs to see if they help, if they'll slow things down. Exercise, physical therapy, vital, vital for people with Parkinson's. You've got to keep your body as strong as possible to deal with these symptoms because we don't have medication, so you need the physical bodily strength that only exercise, good nutrition, and just living every day as it comes. And yes, we're there to talk with you and answer questions.
Dan Keller 8:17
So what's the advice to a patient who's showing early parkinsonian symptoms? What kind of steps should they take?
Paula Wiener 8:28
We always tell them to start with their primary care doctor. However, their primary care doctor is not qualified to diagnose Parkinson's disease or certainly any of the Parkinsonism. And I've got to tell you that if you're younger, if you're under 50 or maybe even under 55, your PCP may miss it entirely, because they're looking for Parkinson's in much older people. If you don't get an answer from your PCP, you need to see a neurologist, at least a general neurologist. We would prefer that you went to a movement disorder specialist, because these folks have additional training past their neurology residency, and it's all they see. They don't fool around with epilepsy or stroke or ADHD or migraines, just movement disorders, and Parkinson's and the other ones we've talked about so far are classified as movement disorders.
Dan Keller 9:32
Can they find a movement disorder specialist through the Parkinson's Foundation?
Paula Wiener 9:37
Yes, we do that all the time. We love to do that. You call us, we talk about where you are, and we try to get one that's as close and convenient as possible. But I do have to tell you that some people actually make a two-day trip to see their movement disorder specialist. They will drive one day, they'll stay in a motel, they'll have a first thing in the morning appointment, and then they'll drive back. That's how much they value the care of a movement disorder specialist.
Dan Keller 10:09
Now, since these are movement disorder specialists and not specifically Parkinson's disease specialists, they cover the spectrum of all these Parkinsonisms?
Paula Wiener 10:20
Yes, all of the diseases that are classified as movement disorders. And there's more than just what we've talked about. Essential tremor is a movement disorder. Huntington's disease is a movement disorder. Everything that is classified as a movement disorder falls with them. If you have epilepsy, they say, nice meeting you, there's the door. They will not look at you.
Dan Keller 10:48
Anything important to add or that we've missed?
Paula Wiener 10:51
Just that the helpline is here for you. We do a wide variety of things. We refer people. We can just sit and talk with you if you're having a bad day. And as I say to some of my long-term callers, you know you can call me when you're having a good day. I would just love to hear about a good day every once in a while.
Dan Keller 11:13
I hope they do. I hope they have more good days than bad. Thanks a lot. You. I on our website at parkinson.org you can find more information about Parkinson's disease and other conditions of parkinsonism. Just search parkinsonism. There is a short interview from the New York Times with Michael Okun, the National Medical Director of the Parkinson's Foundation. You can also find a more extensive fact sheet titled Parkinson's disease versus parkinsonism, describing the difference between Parkinson's disease and other parkinsonism conditions at parkinson.org/library and of course, our 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.