Look at race and the obama presidency. He will talk with author and journalist april orion from the studios. That is a look at some of the author programs a book tv tv will be offering this week. Look for them to air in the new future on book tv on cspan2. [inaudible] [inaudible] [inaudible] [inaudible] hello everyone. Hows everyone doing tonight . Good. Wonderful. I want to welcome you to peninsula arts and letters where the nonprofit and we are so thrilled tonight to be hosting in conversation about offermans new book brainstorm, the race to unlock the mystery of parkinsons disease. His books are for sale at the register. A big thank you to the park and stint institute parkinson institute. Cspan is filming tonight. I will ask you to please raise your hand if you have a question and will bring the microphone over. Doctor john is a Professor Emeritus at the university of oregon. He is an emmy dupont and peabody old awardwinning journalist. A name and fellow. In addition to producing more than 40 primetime documentaries for the bbc and pbs, he is coauthor of case of the frozen addicts along with the dream machine. Doctor langston is a scientific director and chief executive officer and founder of the Parkinsons Institute in sunnyvale, california. He crow wrote the case of the frozen addicts and is author or co author of 360 publications in the field of neurology. He has received awards. Please, give a warm welcome to the doctors. [applause]. I am john, it is so nice to be here. Four years ago ago i learned that i had parkinsons disease and of all the diseases i might get it was ironic that i would get parkinsons. 25 years ago at the start of my career i worked on the film the cases of the frozen he was a young neurologist who discovered these turning up inside words and prison cells unable to move or talk. They had contracted this is dumbs of parkinsons disease overnight. My colleague tracked the case and realized there is a neurotoxin and this led to a revolution in parkinsons at the time. If you confess were 25 years i ended up getting it myself. So bill. Ill say a few things. The story that many of you may know started in northern california. A synthetic heroin hit the streets and somebody made a bad batch of it. Some of these young addicts all got parkinsons overnight. What was a tragedy for them turned out to be a huge boom in research. In not only gave us first models of the disease which changed, it also started a whole renaissance and looking at environmental toxins for the disease. Roger lewin who is talked about wrote for the Science Magazine and he wrote a article called the trail of irony leads to parkinsons disease. Let us hold toxin and heroin story. He said my god, this would make a great novel. So it was awardwinning Novel Program which i now learn from my kids. The kids are going to say what i saw you on tv. So that thing has a long life. As john said it started with the trail of irony, john being now firsthand with the disease its amazing irony with the book is written. He will say more about it in a few minutes, its really amazing. Initially when i got the diagnosis you think i would behaved in a sophisticated manner. Like everyone i got angry, i was in denial, in denial, i try to keep it secret for a long time. On the basis of the idea that if you can blend in with the land of the well it cannot be that serious. After about a year i went to visit with bill at his house and we spent two or three hours talking about the developments that have been made in Parkinsons Research in the last 25 years. I came away with a sense of destiny that i felt this is my duty as a parkinson patient to find out as much as possible about the malady that is now my future. To use my training to figure this out. That is what led to this book. Brainstorm. It has been been a wonderful experience not only because i got to meet many neuroscientists because of my association with bill i already knew a lot of them. I met many parkinson patients, people, people who share a disease, are members of a try. We call ourselves parties. You have instantly and, you share a lot with these other people. I met many courageous inspiring individuals like pamela quinn who is a new york belly dancer with parkinsons. She tricks patients how to move their body properly. And tom isaacs who walked to the coastline to raise money for parkinsons. He walked 4500 miles which is the equivalent of the Michael J Fox foundation over there. I will talk more in a minute the basically the explanation of parkinsons as you know is a tremendous amount is being learned and a lot of things that we thought would have worked out 25 years ago which have not. But the great thing about science is that even though there are setbacks, the journalist ruby always has to take care of the truth. I want to know what really works, but the patient in me needs hope. Theres always something coming around the horizon, which your group that. Oh yes. I think johns work and my personal view of committed my career to following this disease, almost 30 years really. We have had a lot of false leads and we can talk more about this later, i think we are on the threshold we have not been on before. We can talk about some of these issues in a bit. For the first time when you do a crossword puzzle the first thing you do is get the corners, i think we have the corners. I would never have said that a few years ago. Well get into this a little more, i want to talk about johns book. First of all it is wonderful to have a spokesperson with his journalistic talent on our side. Im talking about anybody who has parkinsons or Family Member with the disease. There is a lot of books that have been written on parkinsons disease. Some of them are about patients and patients who talk about what it is like to have this disease. They are really good books but the also try to cover science. Those books almost always fall short on the science side. There are books by other scientists and doctors on parkinsons disease and usually the science and the drug trials they do pretty good but when they try to tell a story with someone with parkinsons, even though they have seen thousands of patients they still fall a bit short. In johns book it is the first one ive ever seen that has both. I dont want to preempt what youre going to say but as a journalist and people did not know he had parkinsons, he basically interviewed the top 30 or 40 in the world on tv and they first gave him a straight shot because when doctors know you parkinson theyre going to soften a little bit. They dont want to get you depressed or whatever. They did not know he had it. So he really got straight information. He put it together in a book just beautifully so we know what its like to have this disease, how it changes your thinking, the pathways of how to deal with it. Its absolutely brilliant. And it alternates from chapter to chapter so you cant really read one without reading the other. In my opinion its the best book ever written from both perspectives. Its a great work. Thank you. I would would like to read a bit about some point about how i try to keep it secret from scientists. Why had told my friends and family that i had parkinsons, i had not told everybody. When i interviewed Parkinsons Researchers on the phone i present myself as a journalist and did not mention that i was also a patient. My rationale for doing this is that i wanted the honest truth, i didnt want anyone holding back Vital Information first fear of disappointing or demoralizing me. I wasnt entirely convinced of my recent. Maybe i didnt because i could get away with it. When i met clinicians in the flesh i told them up front that i had are considered because i knew they would recognize it. On the other hand with lavish lurch not trained i usually avoid imagining it. I guess the truth is like many recently diagnosed people parkinsons, i am driven by a wish to blend into the world at least part of the time. If nothing else it is a confidence builder. It is easy to believe that i can do the things i have always done to giving lectures and producing documentaries if i believe my condition is mild. Part of doing that is moving around strangers without thinking i look odd. Eventually i know that i will wear my disease like a scarlet letter. I think that is what many partial consents patients would go through that process. On the science, parkinsons is being characterized by long time is a Movement Disorder. It is what they notice when they wandered around the streets of england, they notice notice the tremor, the slowness, and stiffness. Recently it has undergone something about rebranding. I tend to look now as a play in three acts. Ten to 15 years before a person gets diagnosed the diseases going in in their bodies already contributing to things like loss of smell, constipation, sleep disorders. Then the second phase is the normal diagnosis with the Movement Disorder phase where the pathology moves to a different part of the brain. Then after that it goes on to other regions of the brain like the cortex and people get other conditions like hallucinations and dementia. So it has become a complicated disease where people list the non motors to symptoms golfer page after page. It is taking something that was well focused and turned into something more complicated. It is difficult to talk about from a Patient Point of view. The good news is that we have an idea of the bad actor in this. We think the bad actor is a protein that goes rogue and formed the sticky clumps which go from cell to cell destroying the cells as they go. So we have pathology. It is a bit like a Zombie Movement movies where a zombie touches someone and they become a zombie. Its like these clumps they spread through out brain in that way. That has given hope for disease modifying treatments. There is excitement now, things move very slowly in biomedical research. The basic idea was discovered in 1997 and it is now 2015. Let me talk a bit about the new concepts of this disease. As one of the people who first figure this out. In 1996 i realized this disease was more complex and more expensive. I wrote an article kind of a pivotal piece entitled parkinsons disease, so much more its just the tip of the iceberg. I i thought when i wrote that this disease could affect multiple areas of the body, the spinal cord, the nervous system, i really thought really thought i was going to get a huge amount of letters from the editor that were going to be throwing tomatoes. But it got accepted without any revision and i have never gotten one negative letter on that. Now we know that this disease does affect many other areas. While that is in some ways may be doesnt sound so good let me tell you the Positive Side. Number one is, before this neurologist, patients would come in and we would change their medication but they would have all these other complaints. Was kind of like the waitress, not not my table. Constipation, urinary bladder problems, and others. We just do not think it was part of what were dealing with. Now we know that almost all of those are parkinsons. We are trying to develop with el camino hospital, a circle of care. Were getting experts and with urinary and bladder problems, experts problems, experts and g. I. Problems, sleep disorders, and their doctors who are not just in their own specialty like a regular neurologist. Its its doctors who really know the neurological that parkinsons is doing this. And it is very different all of these things. So now we are starting to grapple with them. I deal with i would say 80 of my practice im dealing with all of these others but there is sometimes more bothersome to the patient, they cant sleep in their up all all night because they have to urinate frequently. The constipation is a horrible problem, were dealing with that now. Thats the good news. In fact one of my colleagues at ucla recently said, were becoming the gps for parkinsons. We now know that we have to deal with all of these things. The second thing is on the Positive Side is that many of these disorders start before the parkinsons. That we now know a huge number, anywhere ranging from what john mentioned the loss of sense of smell, the the rem sleep disorder, patient excited, depression, that will precede parkinsons by five or ten years. Thats a clue. If we can get an early before the disease has left its devastation maybe before its in the peripheral nervous system we might be able to do with prevention and stop it. So the good news is that is giving us a handle to identify these early. The article i mentioned in 2006 starts out with a vignette. It says a patient comes in, 72yearold man and said he lost his sense of smell for 12 years. About five years ago he started having severe problems with constipation. Now he comes in because hes having violent behavior be in the night, as part of parkinsons. And if you doctors would think parkinsons is the first diagnosis. But right now we all know it is early. That gives us a chance to get in into something early. The other thing is if we can deal with the whole disease for the first time. We have to deal with the whole thing. The issues now and the ones who know it are really onto it. So the risk factors and you really need a biomarker to make diagnoses early. Then that would be fantastic because if you had a biomarker for ten years before i got parkinsons if we have been able to tell ago put in one of these agents i never would have gotten it. We had the agent now it would still be good because maybe they cannot be too much about the motor problems but it would stop the progression further which would also be good. So as i did seize modifying therapy there are several agents going into trial in the next year too. This is the good news at the moment. The most exciting news. As a Skeptical Science journalist i dont expect them to work straight off the bat but there is good grounds for hope. I think the other side of it, thats what what we call disease modifying therapies. The other thing which is also important is things that matter with the symptoms, symptom modifying. Now were extremely fortunate to have the drug, although i have to say it is been known for over 50 years and in that 50 years we have been to the moon, secants the human genome, invented the internet and we still dont have a good way to deliver it in a more sophisticated way. As a patient patient i see this i say more should be done and that, do do you agree . Yes. Fifty years of where the cures . But i think there has to be a better way of delivering the medication. Weathers good news and bad. And i really want to come back to this story in a minute. Number one, one of the big problems with levodopa is it is still the best drug, when you take a pill it peaks in an hour and half and then it drops off. So some patients have all of these problems and they wear off. Now we think the upanddown lead to a lot of the side effects. It actually works almost forever, it is just the side effects that give you the ups and downs. Then when you try to fix it you have to cut the dose and you really want more. Theres some new developments one is already out there its called by karen. The came out on the market a few months ago. Its a company in fremont its a capsule with many little capsules inside. Each one dissolves that a different rate. So when you you take up the ghost to the gut it keeps releasing levodopa so instead of bouncing all over the place you get a nice smooth response. Theres no evidence that if you can get that for a number of years the side effects go away. That is out there right now. We usually give patients a month supply free so we can work on insurance. You can get that right now. Second one thats interesting is inhaled levodopa. Were just starting a trial on that. There is a form of levodopa now that is like an inhaler and within minutes you turn on. Our patients have where they are stuck and so this could be a wonderful rescue therapy even under the best circumstance. We just started rolling patients for that trial about two weeks ago. So thats another one that is right now. The third third one that i think is going to be a big winner and this is going to sound wild but accompanying israel has a form of levodopa thats about to deliver. You have a little box about this big that you put on a belt, it has tons of little needles that go into the epidermis. You you dont even feel it because its so small. When you put it on you measure the blood levels and it is constant. Straight into the blood system. Straight in so theres no up and no down. Theres a lot of those even with patients have side effects of their pay. If you can get that continuous stimulation to go away with time. Theres a trial in israel and i said look we want to be the first place in the country to do a trial here. And they said absolutely. We will call you. So i think thats about a year away. That is going to be huge. So were on the trail with it, so its a big deal. So that is one area, the second area where there is progress is with deep brain stimulation which seems to me so far bit hit and miss. You have spectacular results with some patients but not very good with others. But theres a move to what is called closedloop systems. Instead of putting it in as electrode and then leaving it because the battery runs out you have a system which waits until my brain tells me im about to tremor and then it kicks on and interviews with the circuit. Those kind of Adaptive Systems are coming out and i think theyre pretty interesting. Then the third area which seems to me absolutely a nobrainer is the importance of exercise. Actually the exercise is so compelling that if youre parkinson patient, no matter how advanced you are you really need to do as much exercise as you can. Theres a constant call force exercise, i walk about for 5 miles every day. She has a shes my pace maker and the pace that you walk is a predictor morbidity. So if you can push yourself its an advantage. I will tell you an interesting story, i believe that for 25 years. I always tell my patients, exercises every bit as important. I tell them 1 mile a day keeps the dr. Away. A couple of years ago the grand cayman from the university of maryland which i really champion tenet was the first really Scientific Study on exercise and parkinsons where they had control subjects and patients on treadmills. Others did video games. It cost 3 million. The result of that were that exercise, particularly walking is the only thing though scientifically proven to help gauge and balance which is a huge issue with parkinsons. If if you take a walk and get into the hospital you have big time trouble if you fall. So i said to the person ive been telling my patients this for 25 years, and so glad you got the results. Are there through this approach. If you lay i