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The Latest on How to Cope with Parkinson’s Disease

Audio

Aired 7/27/09

Nearly one million people are suffering from Parkinson's Disease in the United States. The president of a local neurology group says there are many ways for those with Parkinson's to cope with the disease. He's speaking at a local event aimed at educating patients and their families about the disease and he joins us today to discuss the latest research and treatment.

This is a rush transcript created by a contractor for KPBS to improve accessibility for the deaf and hard-of-hearing. Please refer to the media file as the formal record of this interview. Opinions expressed by guests during interviews reflect the guest’s individual views and do not necessarily represent those of KPBS staff, members or its sponsors.

The Coastal Neurological Medical Group and Teva Neuroscience will be hosting a Parkinson's Disease Symposium on Tuesday, July 28th, 2009, from 6:00PM to 8:00PM. The event will take place at the Schaetzel Center at Scripps Memorial Hospital.

MAUREEEN CAVANAUGH (Host): I'm Maureen Cavanaugh. You're listening to These Days on KPBS. The face of Parkinson's disease for many of us is that of actor Michael J. Fox. After knowing the actor for years as a teenager and into early adulthood, it came as a shock to learn that this handsome, vibrant man was afflicted with a degenerative brain disease. But Fox is only one of nearly a million people who suffer from Parkinson's disease in the United States. They deal daily with symptoms that range from tremors and memory loss to constant fatigue and difficulty speaking. Doctors know what goes wrong in the brain to produce Parkinson's disease, but in most cases they still don't know why. And as a degenerative disease, symptoms are likely to increase and get worse over time. But there are many treatments available to Parkinson's patients today. Some are experimental, some are pharmaceutical and some require patients themselves to become active in maintaining their own physical and mental abilities. Joining me now to give us an update on Parkinson’s disease treatments are my guests Dr. Dee Silver. He’s a neurologist and president of the Coastal Neurological Medical Group in La Jolla, and Medical Director of the Parkinson’s Information Center in San Diego for the past 20 years. And, Dr. Silver, welcome to These Days.

DR. DEE SILVER (Neurologist): Well, thank you, and thanks for having me.

CAVANAUGH: And my guest is also Catherine Rodriguez. She is board president of the San Diego Chapter of the American Parkinson’s Disease Association and she is, herself, a patient with Parkinson’s disease. Catherine, welcome to These Days.

CATHERINE RODRIGUEZ (Board President, San Diego Chapter, American Parkinson’s Disease Association): Thank you.

CAVANAUGH: And I want to let everyone know that they can join the conversation. If you or a loved one is suffering from Parkinson’s disease and would like to discuss how it’s affecting your life, you’re invited to join the conversation. Do you have questions about new treatments available? You can give us a call at 1-888-895-5727, that’s 1-888-895-KPBS. Now, Doctor, I just mentioned that actor Michael J. Fox is associated in many people’s minds with Parkinson’s disease but give us more of an idea of the range of people who suffer from this illness. Young, old, how many people suffer from Parkinson’s in the U.S.?

DR. SILVER: There’s about a million people in the United States that have Parkinson’s disease, what we call idiopathic Parkinson’s disease and probably for every one that’s diagnosed, there’s probably another one that’s very early and – or is under diagnosed. It’s a very common disease. Age is the greatest risk factor. So as you get older, the incidence or the risk of having the disease significantly increases. And the average age is about 60 that they have the onset of the symptoms.

CAVANAUGH: And I looked it up. I know idiopathic means arising from an unknown cause. The majority of people with Parkinson’s disease, we still don’t know why it is that they have gotten this disease?

DR. SILVER: That’s correct. We don’t know the exact what we call etiology or the exact cause. So most people with Parkinson’s disease, you don’t know the cause. And that, of course, always is a problem for getting the exact treatment. But, as you mentioned in your introduction, we do know that it’s a lack of a neurotransmitter called dopamine. And that’s why we use most of the therapeutic drugs because it helps give more available dopamine.

CAVANAUGH: Now strangely enough, there are forms of the disease that we know do have a cause, right?

DR. SILVER: Yes, there are. There’s forms that we do know, for example, called secondary Parkinson’s disease, or Parkinsonism is actually a better term, and those can be related to drugs, infection, head trauma. Mainly what we see oftentimes is drugs. But those are called Parkinsonism and that usually – those can be helped by withdrawing the drugs and the patients get better.

CAVANAUGH: I see, so it’s not the classic form of Parkinson’s disease.

DR. SILVER: Correct. There is some evidence now with a genetic abnormality that occurs that can give you Parkinson’s disease but oftentimes these people are younger and they have a significant amount of difficulty with other symptoms like dystonia or posturing or early gait difficulty.

CAVANAUGH: Well, I was about to ask you, Doctor, how are people usually diagnosed with Parkinson’s disease? If they see certain signs and symptoms, what would those be?

DR. SILVER: The classical what we call the triad of the symptoms that help make the diagnosis is tremor, resting tremor, rigidity or stiffness and akinesia or bradykinesia or slowness. And those three classical features tremor, rigidity, akinesia usually in a patient will have an asymmetrical appearance so one side is involved more than the other. And that will give you a very good idea from the examination standpoint when a doctor examines the patient and from the historical standpoint.

CAVANAUGH: And you said in – earlier, when you were talking about how many people in the country have this disease, you said that a lot of people actually do have it but they’re not diagnosed. Are a lot of people in denial about having these symptoms?

DR. SILVER: Well, some people are definitely in denial but I think the area that oftentimes is under diagnosed is when it’s very early, where they’ll have just a little bit of tremor. They’re misdiagnosed as having essential tremor, which is a benign tremor. They’re also misdiagnosed as having just a little slowness or when they get older, they just think that they have some general stooped posture and slowness and they’re not really diagnosed as it’s Parkinson’s disease. And those people oftentimes are denied by the lack of diagnosis of early therapy.

CAVANAUGH: I understand. I’m speaking with Dr. Dee Silver. He is Medical Director of the Parkinson’s Information Center in San Diego and has been Medical Director for that center for the past 20 years. And there is going to be a symposium held tomorrow night from 6:00 to 8:00 at Scripps Memorial Hospital about treatments for Parkinson’s disease. I’d like to bring my other guest into our conversation right now. Catherine Rodriguez, board president of the San Diego Chapter of the American Parkinson’s Disease Association. Welcome, Catherine. Thank you for being here.

RODRIGUEZ: Thank you.

CAVANAUGH: What led you seek a medical opinion about your symptoms that you were experiencing?

RODRIGUEZ: Similar to what Dr. Silver said. I had a tremor on my right side and basically I just attributed it to stress. I was a school principal and I figured I was just stressed. But my husband actually told me I had to go see the doctor, so I did.

CAVANAUGH: So how did you react to the diagnosis?

RODRIGUEZ: Overwhelmed, I guess. I was 43, so I don’t meet the first criteria that most – usually people are older. And the neurologist, you know, told me I had Parkinson’s and then said a lot of other stuff which, at the time, I was kind of in shock and didn’t really comprehend. So the first thing I did was actually call the Parkinson’s Disease Association of San Diego and they provided me with a lot of information that was very helpful.

CAVANAUGH: And now you are board president of the San Diego Chapter of the American Parkinson’s Disease – so you’ve gotten involved and taken an aggressive sort of posture to understand and to live with Parkinson’s.

RODRIGUEZ: Exactly. I think knowledge is a key for all of us and the more you’re able to learn, the more you can help with others. So I do do a lot of patient advocacy work and work with support groups and others in the – with the Parkinson’s Disease Association.

CAVANAUGH: I just want to remind our listeners, we are taking your calls if you do have a family member with Parkinson’s or you, yourself, have the disease. You can tell us how your family’s coped or what treatments you’re taking right now. 1-888-895-5727 is the number to call, 1-888-895-5727. I wonder, what type of support does the Parkinson’s Disease Association offer to patients and their families?

RODRIGUEZ: A variety. We have educational services, we have seminars. Dr. Silver’s spoken at several of them. We have newsletters, we have support groups, and there’s over 20 of them here in San Diego. So there’s some for people who are older, some for more advanced stages, for young, I mean, English speaking, Spanish speaking, so we have a variety of support groups. We also have family services such as respite care, which provides time for the caregiver to get away and have time on their – for themselves. We have transportation programs for Parkinson’s patients. We have what’s called the Tremble Clefs, which are a singing group. One of the classic symptoms with Parkinson’s is a loss of your ability to speak clearly and a speech therapist works with the Tremble Clefs and they sing but the singing is also speech therapy.

CAVANAUGH: And, Dr. Silver, I wanted to ask you, what – you’re going to be at a symposium tomorrow night…

DR. SILVER: Yes.

CAVANAUGH: …talking about the latest treatments in Parkinson’s disease and I wonder if you would share some of that information with us here. What is the latest news on the disease?

DR. SILVER: Well, there’s very important, interesting information that can fit into two categories. One, nonpharmacological therapy and, two, pharmacological therapy. The first, nonpharmacological therapy is exercise is very important. Exercise, which we’ve been stressing to the Parkinson Association is very, very important to maintaining the body health, the mind health. It helps you focus on activities and there’s good evidence that it really has some ability to delay the progression of the disease. So exercise is important. It helps avoid deconditioning. That occurs when people get older with a degenerative disease, they get into deconditioning. So that’s very important. The other important aspect about exercise is doing things that focus on your mind-to-motor activity. And then, of course, doing things that improve your cognition or your memory or your mind’s agility. The second part is the pharmacological therapy. We’re going to talk about some of the newest aspects. We’re going to review the fact that dopamine agonists are very beneficial, that’s Requip and Mirapex. We’re going to also go over kind of how we go through the algorithm or the format of treating Parkinson’s disease from beginning to the disease as it progresses. We’re going to talk about the MAO type inhibitor Azilect or rasagiline because that’s been shown now to probably delay the progression of the disease, and the last large study shows that’s very important. We’re going to briefly talk about a number of the clinical trials we have in our office that are very helpful to allowing people to have a better chance of improvement and also help the scientific advancement. We have a great new drug that’s a different formulation of L-dopa that actually is looking very promising.

CAVANAUGH: So everything from new pharmaceuticals to actually working to take charge of your own disease.

DR. SILVER: Right, and that’s tomorrow night at 6:00 to 8:00 at Scripps Memorial Hospital Schaetzel Center off Genesee.

CAVANAUGH: Let’s take a call. Dr. Silver and Catherine, we have a caller on the line. Lee is in San Diego. Good morning, Lee, and welcome to These Days.

LEE (Caller, San Diego): Hi. Good morning. My question is, I have a friend who’s quite young. He was diagnosed with dystonia, you know, writer’s cramp, pretty much musician’s dystonia. And where’s the line between dystonia and Parkinson’s and what should we be looking for in regards to – How fast his, you know, could it degenerate, is what I’m saying, is where’s the line between that?

CAVANAUGH: Thank you, Lee. And could you tell us, Doctor, what is dystonia?

DR. SILVER: Sure. Dystonia is another movement disorder. And you diagnose it by the history and the physical exam. You can see dystonias in Parkinson’s disease but it’s usually when the patient is off medication or sometimes when they’re at the peak of the medicine but usually it’s off. Now, younger people have dystonia, it falls into a number of clinical diagnoses and the prognosis may be very, very good. Being an old musician, I can tell you I saw a lot of musicians in the old days when they didn’t realize that they had a focal hand dystonia, or writer’s cramp is another focal dystonia or, for example, cervical dystonia. Those diseases, you need to see an expert, a movement disorders specialist like myself or there’s a number of other ones that you can get in the county and they will help make the differential diagnosis. The diagnosis of Parkinson’s, as I mentioned, is really based upon tremor of a resting type, rigidity, akinesia, and asymmetry.

CAVANAUGH: Let me ask you, Catherine, you have taken charge of your disease in a number of different ways and you came in here with a beautiful dog. Her name is Honeybear. How does your dog help you?

RODRIGUEZ: She works with my gait. Parkinson’s people tend to shuffle when we walk and then that causes us to lose our balance. I think if you remember Mohammed Ali at the Olympics, that shuffle really comes to our – to most people’s mind. She sets my gait and I use her as a visual cue so that I walk better. And, you know, as Dr. Silver says, exercise is very important. She has me out there walking every day over a mile now.

CAVANAUGH: Exactly. So, Dr. Silver, with the exercise and with – there’s also, Catherine mentioned, musical therapies.

DR. SILVER: Correct. Musical therapy is becoming more prominent in all aspects of any chronic disease or stroke and it’s very beneficial in Parkinson’s because oftentimes patients with Parkinson’s get very soft voices or what we call hypophonia and they need to learn how to breathe. It’s just like if you were a musician with a reed instrument or a brass instrument, you have to learn how to breathe to get maximum volume and tone. Same thing with Parkinson patients. And, oftentimes, a little help with that is very beneficial. San Diego Parkinson Information Center and their Association, we’re really gotten that going along with the exercises. I remember when we started it 25 years ago, that was one of the things that Mary Mallory and I really emphasized was the exercise and now it’s many places in the county and it’s very beneficial.

CAVANAUGH: I wonder, Dr. Silver, what’s the future that you see of Parkinson’s treatment? We’ve heard an awful lot, of course, about stem cell research and the promise that may hold. Is there any kind of a really great treatment or a cure on the horizon?

DR. SILVER: Well, I don’t see a cure right on the horizon. There are several things that have happened that may be of benefit. One, in younger Parkinson patients a lot of people are getting genetic testing and that may give us some idea and that may be of benefit because if you have the gene abnormality, it’s oftentimes related to a protein and then you get a better idea of the protein abnormalities that occur. Number two is that there have been clinical trials with embryonic stem cells and other types of stem cells, two of them, and they haven’t been very rewarding. So right now, it’s not really of clinical benefit. There’s a lot of things going on out of the country and that that probably don’t have a lot of validity and I think you got to be careful of that. I think one of the things that’s really exciting and if you watch any of these UC TV series, as I do, for University of California, in there we’ve talked about the ability to take a skin cell from either an animal or a human and put it in media in little petri dishes and formulate the environment and allow the development of a cell that can produce dopamine. And I think that’s really probably where the area’s going to go but it’s really basic science now and, unfortunately, we have to see. There’s the other concept about gene therapy which is kind of complex and it’s had its setbacks so we’ll have to see how that goes.

CAVANAUGH: And, Catherine, I wonder what do families need to know as they’re caring for someone who’s come down with Parkinson’s disease? What are the important things that they need to know so that they can help a person with their own treatment?

RODRIGUEZ: Well, first of all, you know, contact the Parkinson’s Disease Association or look online. There’s a lot of information out there. Learn about what the disease is and what, you know, your options are. And be supportive, be there for the person, someone to talk to. And I think just realize that, yes, it is, you know, a neurological disease and there is no cure but it’s not the end of the world. I mean, you get up in the morning and I think, you know, attitude, just having a positive attitude and saying, you know, we’re going to make it today, we’re going to do well, and – and helping that person to do it because it is – you can live a, you know, basically a normal life for many, many years. So I think that’s real important.

CAVANAUGH: I want to thank you so much for sharing your story and your knowledge with us, Catherine. Catherine Rodriguez. She is board president of the San Diego Chapter of the American Parkinson’s Disease Association. Thanks for coming in.

RODRIGUEZ: You’re welcome.

CAVANAUGH: And Dr. Dee Silver, neurologist and Medical Director of the Parkinson’s Information Center in San Diego. Dr. Dee Silver, thank you.

DR. SILVER: You’re welcome. Thank you, Maureen.

CAVANAUGH: And you can hear more from Dr. Silver at a Parkinson’s Disease Symposium being held tomorrow night from 6:00 to 8:00 at the Schaetzel Center at Scripps Memorial Hospital. Stay with us. We will continue in the second hour of These Days in just a few minutes here on KPBS.

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