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Patient-Centered Care for Parkinson's Disease (PD)

Melanie Cole (Host): Welcome to Back To Health, your source for the latest in health, wellness, and medical care. Keeping you informed, so you can make informed healthcare choices for yourself and your whole family. Back To Health features conversations about trending health topics and medical breakthroughs from our team of world-renowned physicians at Weill Cornell Medicine.

I'm Melanie Cole, and joining me to share a patient story and Parkinson's disease awareness is Dr. Matthew Fink. He's a Lewis and Gertrude Feil professor and chairman of the Department of Neurology at Weill Cornell Medical College and neurologist-in-chief at New York Presbyterian Hospital, Weill Cornell Medical Center; and Lawrence Sterne, who's a patient of Dr. Fink's and joining us is his wife, Susan Sterne.

I want to thank you all for joining us today. Lawrence, let's just get right into this and start with you. Can you please tell us your story and how you came to meet Dr. Fink?

Lawrence Sterne: Dr. Fink was not the beginning of my story. It started about a year earlier, I was diagnosed with Parkinson's disease and became a patient at Weill Cornell in the Parkinson's practice. And, my doctor wisely warned me that I needed to get my blood pressure down, but my general practitioner didn't think it was anything to worry about, so we didn't worry about it. And about, I guess, a year or so later, I had a stroke. And it was at that point that I met Dr. Fink. He was my stroke doctor and, eventually, my Parkinson's doctor moved on to a different hospital. And I stayed on with Dr. Fink, who knows a lot about Parkinson's as well.

I just want to frame this, Dr. Fink is not your typical Parkinson's doctor. It's a different disease than what you see a lot of. It's a progressive disease, has no cure, and people tend not to die of it. So it's great for a doctor particularly who likes research and most of the doctors in Parkinson's practice are researchers. And if you bother them on the weekends, they like it. And Dr. Fink, he doesn't treat his patients like his specimens to be researched. So that is a major difference, I think.

Melanie Cole (Host): Well, that's so important and thank you so much for telling us how this all began. Susan, how did the diagnosis of Parkinson's affect the quality of your family life? Speak about Lawrence a bit, and you as a caregiver.

Susan Sterne: I think the first thing was a great deal of uncertainty, because it's very difficult when you read about it and what your individual situation might be. And I think where Dr. Fink has actually been so helpful is in being able to differentiate each patient, because each patient is very, very different in Parkinson's in how they evolve, what they need. And he's been just fantastic at that. And particularly when it got to the point that the medications were just no longer working, which he quite truthfully had warned us about for many years. And he brought up the suggestion of the DBS surgery, because we also added that on to what we did afterwards, is that Lawrence had deep brain stimulation surgery. And Dr. Fink was able to cut his medications in half and he continues to work with what is -- you know, again, each patient is so unique, I think, in Parkinson's and I think that's perhaps somewhat different than in other diseases. So he has been wonderful in being able to help us along these different paths.

Melanie Cole (Host): Which is even a more complex situation given the stroke. So, Dr. Fink, please tell us about the treatments Susan just mentioned deep brain stimulation. What is exciting in this field right now? Tell us a little bit about how you work with your patients.

Dr Michael Fink: Sure. Well, thank you. First of all, Susan and Lawrence, thank you so much for joining us and for your gracious comments. I first Lawrence now it was 15 years ago. And I learned a long time ago and he mentioned that this is a chronic illness. It's not cured by anything that we know right now and it also doesn't kill you. So, I mean, Lawrence and I are in this for life really. So it's a long-term relationship that you have with a patient who has Parkinson's disease, because it goes on for a long time. And so he followed the course, which is quite common that, for about 10 years, he did very well taking medications and we adjusted medications and we used different forms of them. And he did well and then, he stopped responding very well to medications.

And so we talked about treating him with a technique, which was developed over many years. And we were one of the most active groups developing this deep brain stimulation, which is a treatment where the neurosurgeon places very, very fine, thin electrodes deep down into the brain, into the part of the brain that controls movements. And we've discovered from years of doing research in this area that applying a very mild electrical stimulation to this part of the brain has an extremely beneficial effect on patients with Parkinson's disease. It diminishes the tremor. It makes their muscles more flexible, improves their movements and activity and allows us to then reduce the medications. And it is truly an amazing treatment and it lasts for years and years. We have not found any patients where the effects of the brain stimulation in fact wear off. It continues to work for a long time to come.

And in the future, we have some really exciting new treatments on the horizon. The one that I am most excited about is the use of stem cells that are inserted into the brain of the patient who has Parkinson's disease. These stem cells have been induced to become brain cells, neurons that produce the missing chemical called dopamine, and they're put into the person's brain and it replaces those brain cells that have been lost. And I really feel that this is going to turn out to be a revolutionary treatment for this condition. We're just starting to treat a small group of patients with the treatment. We will know within, I think, another year or two whether it works well. And if it in fact, does, I think there are going to be many, many patients that are going to benefit from that treatment.

Melanie Cole (Host): That's so cool, Dr. Fink. Very exciting developments. Lawrence, how do you feel now after DBS and working with this very kind and compassionate doctor? How do you feel?

Lawrence Sterne: It's been four years since I had surgery here. And I feel like I was given a gift. I was rapidly becoming dysfunctional prior to the surgery. And now I'm pretty good, so I'm happy.

Melanie Cole (Host): Susan, I'd love it if you told us what the staff were like for you at Weill Cornell Medicine. What in particular stood out about the care that Lawrence received and even the communication that you received? Please share in your own words why you appreciate this care team so much.

Susan Sterne: I think they've all been wonderful from day one, certainly in the warning we didn't take about the potential stroke. But then afterwards, we went in to Weill Cornell and went to Dr. Fink. It was called unexplained stroke. And we had several doctors that went through what had caused the stroke and they were able to completely comfort us that this was not going to happen again, which of course was very important to have that belief before you did the DBS surgery. So I think that they were instrumental in getting us past those initial fears with the stroke and certainly with the Parkinson's. You know, every time we have an appointment with Dr. Fink, we sit down and, you know, ask each other, "Okay, what do we want to ask? What do we want to talk about?" And what I always find, which is most frustrating, is that there'll always be one thing that Lawrence will bring up that we never discussed, a further question or a comment about something that comes out of the blue that I didn't know about. And this is a great time to bring it all out for things that might be bothering him and to have Dr. Fink look at how the meds are working, et cetera.

Dr Michael Fink: It makes my life interesting, Susan, that patients come in on any given day and I never know exactly what's going to happen, because the patients always have a surprise for me. So that's perfectly okay.

Lawrence Sterne: I'm glad I can still surprise both of you. I just wanted to comment that the staff is really wonderful at Weill Cornell. I'll start with Dr. Fink, but I'll end with somebody else. I woke up one morning and my face was paralyzed on one side. And I thought, "Oh no, I may have had another stroke." I waited as long as I could, which is about 6:45 in the morning. And I decided to call Dr. Fink on his cell phone. And I got an answering machine and left a message and he called me back about 10 minutes later, apologizing that he was in the shower when I called so couldn't take my call. And he basically diagnosed me over the phone. I went to the emergency room and all was fine. But, if you can imagine that the doctor giving you his cell phone and apologizing for not answering it instantly, it's pretty remarkable. And I think that speaks to the entire staff. They're all pretty remarkable.

But DBS surgery is not a whole lot of fun and I was very anxious about having to stay still and awake for period of the surgery. I will never forget the nurse who prepped me. She helped me through my anxiety. She said, "This is life-altering and nobody backs out." And she was right, it is life-altering.

Melanie Cole (Host): I'm so glad she was able to tell you that. This is so encouraging to hear from all of you. Dr. Fink, what would you like to tell people who are worried about this condition, who have maybe just recently been diagnosed with Parkinson's about the things that they can do to help navigate this complex world that you are so deftly helping Susan and Lawrence navigate.

Dr Michael Fink: Well, thank you for asking. First, there are millions of people in north America, let alone the rest of the world, that are going to develop Parkinson's disease. It's the most rapidly increasing of the neurodegenerative conditions, increasing more rapidly than Alzheimer's disease. And the reason for that is we think that many of the cases are caused by environmental toxins. And we are obviously polluting our world and that's causing more and more cases of Parkinson's disease. And there are a lot of symptoms that occur before the disease has fully manifest.

So for example, there are people that have abnormal sleep patterns and abnormal dreaming or REM sleep behavior disorder, where they act out their dreams. A lot of people have that. Many of those people will develop Parkinson's disease. So the message is if you have funny things that happen to you when you're sleeping, if you have peculiar movements that occur when you're doing work or you're sitting and watching TV, please don't hesitate. See your doctor about these things early on, because we're developing treatments now that we believe can either delay the progression of the disease and prevent it from getting worse or may even be able to stop it in its tracks.

And then aside from medications, we have learned over the years that one of the most effective treatments for Parkinson's disease is physical exercise. Physical exercise can slow and, in some cases, actually stop the progression of the condition for a long time. Like in many other conditions, as you get older, the more exercise you do, the better off your body and your nervous system will be. And that applies to people with Parkinson's as well.

Melanie Cole (Host): I'd love to give you each a chance for a final thought. And Lawrence, I'd like to start with you. If you had to pick a positive part of this entire experience, what would you say was that for you? And what would you like to tell Dr. Fink directly?

Lawrence Sterne: Well, I'll start with the last part first because that's the easiest. Thank you. My words cannot say it any better than that, any more than that. And in terms of what was the best thing that's come out of this, nothing good has come out of this at all. It's an unusual disease, but with Dr. Fink and Dr. Kaplitt's help, I was able to do this DBS surgery and it has really turned things around for me. So thank you again, Dr. Fink.

Dr Michael Fink: I just wanted to say thank you to you, Lawrence. You are one of my favorite patients. And the reason is that you and Susan are so open and honest with how you're feeling and your problems. And you're very clear about likes and dislikes, and that is just a wonderful thing for a patient to be able to openly express to their doctor, how they feel about everything. It makes my job easier and it helps me to take care of you.

Lawrence Sterne: do have something I'd like to add. If anyone who's listening to this is thinking about DBS, be sure -- it's very important to discuss your expectations with your neurologist and the surgeon and make sure that what you expect from the surgery and then the following is in line with what the surgeon and the neurologists think. I've run across people who've had a mismatch in expectations and that doesn't seem to work out too well. So that's an important thing, I think.

Susan Sterne: I might add there that one of the things with the DBS surgery, Dr. Kaplitt did warn us that there might be some short-term memory problems. And I don't think that we actually fully realized the short-term memory problems, because Lawrence could remember none of his passwords after the surgery. And I called Dr. Kaplitt and he called me right back, "Okay," he said, "No, you know, it's normal." And by the time we had changed all of his passwords, he remembered them all again.

Melanie Cole (Host): Well, who of us can remember our passwords? My goodness.

Susan Sterne: Exactly. But this was instantaneous, all of them gone. But they were wonderful. And Dr. Fink going through that whole process afterwards and getting him back on track was fantastic.

Melanie Cole (Host): And Susan, why don't you tell Dr. Fink what you would like him to know about the care that you've received? And speak to any member of the teams that have helped you navigate this.

Susan Sterne: Oh, I think it's been wonderful. I think it's also with Dr. Fink, we thank you. And that he's been coordinating everything for us, because it quite truthfully, the Parkinson's is, you know, very difficult. But I think one of the comfort factor is that you do not die of it. And I think we have realized that in general that you come back, thanks to the good medical care. When you start to slip a bit and you start to get discouraged, we've been very fortunate to have medical professionals who have been able to get Lawrence back on track again. So we remained, I think, extremely optimistic.

Melanie Cole (Host): It's a real multidisciplinary approach to dealing with all of this. And Dr. Fink, I would just like your final thoughts on this and your final words, because this has been so uplifting, such an encouraging story that Lawrence and Susan have told us today and, of course, your compassionate care. What would you like to leave the listeners with?

Dr Michael Fink: I would just like people to never lose hope regardless of what the problem is. We are always here to find something that is going to help. Whatever the problem is, we will find something to help you. And that's really my purpose in being a doctor, is to do that. And that's the way we look at things and that's the way we will always take care of our patients.

Melanie Cole (Host): That's lovely. And I just absolutely thank you all for joining us and sharing this story and sharing how you all work together. Thank you again. And Weill Cornell Medicine continues to see our patients in person, as well as through video visits. And you can be confident of the safety of your appointments at Weill Cornell Medicine.

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