Dr. Robert Hauser, Director at Parkinson’s Disease and Movement Disorders Center in Tampa, discusses the signs and symptoms of Parkinson’s disease and OFF periods (a time when symptoms recur while on baseline medication), and ON periods (when symptoms are controlled) as well as ways to help manage them with treatment options.
Bob Harmon, diagnosed 13 years ago shares his journey and talks about his participation in a clinical trial to treat OFF periods that was recently FDA approved. A 2014 survey of more than 3,000 people with Parkinson’s conducted by The Michael J. Fox Foundation found that nearly two-thirds of participants reported having more than two hours of OFF time per day.
Dr. Robert Hauser is a Professor of Neurology at the University of South Florida (USF) College of Medicine, located in Tampa, Florida. He serves as Director of the USF Parkinson’s Disease and Movement Disorders Center. Dr. Hauser earned a medical degree from Temple University School of Medicine, in Philadelphia, Pennsylvania, and completed neurology training at the Eastern Virginia Graduate School of Medicine, Norfolk General Hospital. Dr. Hauser completed a fellowship in Movement Disorders at USF and became Center Director in 1994. Dr. Hauser has authored or co-authored more than 300 peer-reviewed publications. He lectures frequently at scientific meetings around the world. He is a Past Chairman of the Interventional Neurology Section of the American Academy of Neurology, has served on the executive committee of the Parkinson Study Group and was a member of the steering committee for the NIH sponsored Neuroprotective Exploratory Trials in Parkinson’s Disease program. His primary research interest is in the development of new medical and surgical treatments for Parkinson’s disease and other movement disorders.
Bob Harmon, age 70, of Winter Haven, FL, was diagnosed with Parkinson’s in 2006 at the age of 57. For two years prior, Bob noticed changes in his motor and walking skills: a tremor in his right hand that eventually made eating troublesome and a gait he thought was associated with aging. As shocked as he was when his neurologist confirmed a Parkinson’s diagnosis, Bob, with the help of his wife and family, has taken action for the greater good. In 2010, Bob started an annual Golf for a Cure for Parkinson’s Disease tournament and founded Parkinson’s Cure Research Funding, Inc., a non-profit dedicated to raising money for Parkinson’s research and patient support. He also created a monthly Parkinson’s support group. Bob also, like many people with Parkinson’s, experiences what are known as OFF periods, times when Parkinson’s symptoms return between doses of baseline Parkinson’s medicine. Because of this, Bob volunteered to participate for a clinical trial for a medicine for OFF periods. Bob says that his Parkinson’s diagnosis has given him the outlet to do for others and that fundraising, starting a support group and participating in clinical trials has made him a better person.
Neal Howard: Hello and welcome to the program. I’m your host Neal Howard here on Health Professional Radio, glad that you could join us again. Parkinson’s affects approximately a million people here in the United States and rates are increasing, but it can be a challenging disease diagnosed because the symptoms differ from person to person. Now April is Parkinson’s Awareness Month so it’s a perfect time to learn more about this condition, including what I refer to as ‘off periods.’ Now joining us on the program to talk about this very important health topic and why we need to communicate how we’re feeling are Dr. Robert Hauser, Director at Parkinson’s Disease and Movement Disorders Center in Tampa, Florida and one of his patients Mr. Bob Harmon, he’s living with Parkinson’s today. Welcome to the program both Dr. Hauser and Mr. Harmon, thank you both for joining us today.
Bob Harmon: Great Neal.
Dr. Robert Hauser: Thank you.
Neal: Well Dr. Hauser, a bit of background about yourself briefly.
Dr Hauser: I’m professor of neurology at the University of South Florida here in Tampa and we do a lot of research in Parkinson’s Disease with patients, trying to assist developing new medications and treatments for Parkinson’s Disease.
Neal: And Bob, just a bit about yourself.
Bob: I’ve been retired. I retired actually the year I was diagnosed 13 years ago. I’m pretty active in the Parkinson’s community through our support group and fundraisers and events like that.
Neal: Dr. Hauser, what exactly is Parkinson’s Disease and who is most at risk?
Dr Hauser: Yeah, Parkinson’s Disease is a neurologic condition where individuals are losing dopamine neurons and this chemical messenger in the brain, dopamine, when it goes too low, individuals develop the signs of Parkinson’s Disease. Parkinson’s Disease is usually asymmetric, one side tends to be affected first and worst and we look for slow and small movement, stiffness, tremor, decreased stride length, decreased facial expression, soft voice – those are the signs of Parkinson’s Disease. Unfortunately, we’re all at risk for Parkinson’s Disease, the biggest risk factor is age. The older you are, the greater the risk is for Parkinson’s Disease. In general, if you look at a population aged 60, about one percent of individuals have Parkinson’s Disease. If you go up to a population aged 80, about 2% of individuals have Parkinson’s Disease.
Neal: Wow. Bob, based on what Dr. Hauser has described, would you consider yourself classically symptomatic as far as your diagnosis is concerned? Were you experiencing some, most or all of those symptoms that Dr. Hauser was talking about?
Bob: Most of them. I do not have a very significant tremor which a lot of people look at Parkinson’s and that’s what they look at but all of the other factors, I did have.
Neal: What was it that led to your diagnosis? Was it something that took over immediately or was there a time period where things were getting progressively worse?
Bob: There was a time period where it got progressively worse. I kept going to my family doctor, talking about his condition that I had and I just wasn’t feeling right and I just didn’t explain it to him very well apparently. But he missed it and I finally asked to go see a neurologist, I went to the neurologist and he came out of his office, watched me walk towards him and down the hall and as I walked in the door, he said “You’re here because you have Parkinson’s.
Neal: Dr. Hauser, what is it about Parkinson’s that makes it so hard to diagnose?
Dr Hauser: Well as we get older we tend to slow down. So when a person doesn’t have tremor, it’s a little harder to diagnose. I would say about 70% of Parkinson patients do have tremor and that makes it easier to diagnose because tremor is abnormal but if a person is in that 30% it doesn’t have tremor, if it’s just slowness it’s a little harder to diagnose.
Neal: So how is it generally treated?
Dr Hauser: We have the medications, we have the baseline treatments are really designed to boost dopamine in the brain and initially that works pretty well. Medications last from dose to dose and patients get benefits but over time patients find that they fluctuate with regard to their response. They have periods where the symptoms are well controlled and we call those ‘on periods’ but they also have times when the symptoms re-emerge or come back and we call that ‘off period’ so these are times when the tremor, the slow and small movement, the stiffness comes back so we’ve been looking for better treatments to treat those off periods.
Neal: Are these off periods more frequent for you Bob or do you experience them?
Bob: I do experience them. They have gotten more frequent or longer in duration over time. I now have four distinct periods of time during the day that I’m generally going to be off because of the timing of my medication so I have expectation that it’s going to come and it does.
Neal: Well Dr. Hauser, as far as the medication Bob’s talking about, his timing – shouldn’t it be a matter of just adjusting when the medications are taken? Or is it much more complex than that as far as keeping a patient on?
Dr Hauser: Yeah, it’s more complicated than that. Two things are happening in the brain, the brain’s ability to convert oral medication of dopamine and have it last for a longer time is diminishing but the other thing that’s happening is that the gut is working less well so to take pills, the pills have to get past the stomach to get absorbed so it takes longer for them to go through the gut and get up to the brain so that’s why there’s been emphasis on non-GI medications and in fact what we’re here to talk about today, a medication called Inbrija™ by Acorda and in fact I’m excited to be here on behalf of Acorda Therapeutics to talk about this medication.
Neal: So why is the approval of this medication such an important factor when we’re talking about Parkinson’s?
Dr Hauser: Yeah, so this is an inhaled levodopa medication and in the clinical trial, what was seen was that patients when they entered one of these off periods, took the medication and 30 minutes later, there was a significant improvement in symptoms and in fact onset of action was at ten minutes so that led to the approval of this medication. Now like all medications, there are potential side effects and the most common side effect for this medication was cough. In addition, it’s not for everyone, it’s contraindicated in patients who are non-selective monoamine oxidase inhibitors, medications that are uncommonly used today but some patients are still on them. And it’s not recommended for patients with chronic lung disorders like asthma or COPD.
Neal: Now Bob, are you using this treatment now? Are you a candidate for it, a good candidate?
Bob: I actually was in the trial that led to the approval and came out of that trial about a year ago and I’m here to tell you that yesterday, was delivered to my house, my prescription for Inbrija™.
Neal: Great. So what is your motivation? I know you that you’re in a successful trial and you’re managing your Parkinson’s now, what’s your motivation for doing what it is that you do for the Parkinson’s community there in the Tampa Area?
Bob: Well I’ve made the choice to look at everything as positive, to be proactive. I try to put Parkinson’s in the back seat of the car, it’s got to go where I’m going, I’m not going to go where it’s going to take me and that’s led me into trying to help people with Parkinson’s. We have a support group, we teach Tai Chi, we have boxing, exercise, doing all the things to keep the beast in the back seat.
Neal: So what would you tell someone to think about, to do the questions, to ask maybe as soon as they’re diagnosed with Parkinson’s?
Bob: Well I think they need to be proactive and go get information. You can get information, it’s on the inbrija.com location. There are other locations that have it, get yourself educated and talk to your doctor about what’s going on.
Neal: Dr. Hauser, where can we get some more information in addition to what Bob’s given our listeners?
Dr Hauser: Yeah, there are a number of foundations out there that will provide information and also have websites, so those are also good sources of information.
Neal: Dr. Hauser, Bob it’s been a pleasure. Thank you both for joining us here on the program here on Health Professional Radio. I’m hoping that we’ll speak again sometime in the future.
Bob: Our pleasure, thank you.
Dr Hauser: Thank you.
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