Dec 10, 2013|
Angela discusses Parkinson's Disease with Dr. Brian Copeland of the LSU Health Sciences Center and Parkinson's patient Bonnie Huddleston.
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Automatically Generated Transcript (may not be 100% accurate)
You've got to hear some of the interview on -- interview Brian Collins who is the whistleblower from Burlington here. And tomorrow we're going to Hampshire. To join and that's for the 3 o'clock. And today at 3 o'clock I'm going to pay tribute to just one of the nicest people who -- walked and that's Frank Davis who we lost yesterday. But now. As many as one million Americans live with Parkinson's disease. That's more than all the people suffering from -- -- muscular dystrophy and Lou Gehrig's combined. Shall what is park and what how does one -- and most importantly what can be done to help those who do. Doctor Brian Copeland assistant professor of psychiatry neurology at the only issue healthcare network is with -- to explain at all. And it is Bonnie Huddleston. Who has had parkinson's for almost ten years and started a support. Questioner a few years later I admire your fight to. Let me start with -- -- share. So what were your symptoms first and you know. Well the tremor. And everyone present differently I as an -- history book it's it's ethnically disease and I love that. I hadn't heard that before because everyone is so different. And mine tremors were just little that in mind came in and my -- said. That. You know people. Ages -- you know. And that was the beginning and then it just progressed from there to the point where you just don't denies any wrong I think that that happens to a lot of people I've. Went to a couple of doctors and ones that use I think in my apartment and the influence. On things and actually okay. You're right -- -- I don't -- an anomaly. Actually. And were they testing knew what was going on things were saying well you yes they they actually is a test they ask you to walk. Down the hall usually you know why do little finger exercises. That and that thing. And just watch Q it is if you have tremors its use the rest. And when I was finally Agnes and couldn't deny any longer that was with packaging -- when he was practicing here. And I had my hands in my lap that he was getting heated talk about you know I think my kids families and so on. And them and he -- in five minutes and -- you are. -- -- reality. I said -- you know and the it was awful. And -- with that and movement and the syndicate that in doing this for forty years. And and then you just it's that it's devastating. At first to hear that my daughter with me and them. Something that one here just lost in the dissent there and you know is with me. And social what do you do with that it's okay I'm I've been diagnosed with -- can do cannot do anything to slow up. Yes that well at that point you first of can't deny it any longer but in your mind he still fighting that battle still thing now. And just and it goes -- and be that person who has the progressive. Debilitating. You know it's really edwards' disease. And as a matter of fact -- don't like those words and I use. Parkinson's. Hardly ever use disease I just kind of go around it you know. Yes -- -- then pounded for about a year I think and now is good for you. To get it out. You know you're really do. And and I did that well. The then I. That's a very nice people overnight there. I went to one support group meeting and it was not a good experience and as I'm reading this book I mean I was just the classic. I didn't wanna be around people who had it for twenty years he was not a good picture. But that was not going to be me but I couldn't tell myself that you know. So I. Talked to some doctor -- nurse and some of the people over there they were doing clinical trials. And they said please think about starting a support group. Here and and so I started about four and a half years ago. And. -- and -- -- the most wonderful experience that one of the most in my life. -- that. Oh that's beautiful thing something scary that happened she has beautiful experience exactly doctor Copeland you're listening and shaking your head and and sang. You understand everything from the psychological point of view of what hit somebody who was -- Absolutely and and I hear this story over and over. It is a typical story you know -- not alone in that -- done a great job she's a wonderful spokeswoman for Parkinson's disease. I've actually been to and and spoke to the super group out in Metairie and it really is fantastic group of individuals. On and allows people to come together and talk about. The struggles that they have -- -- it really is a grieving process for. The person you used to be just the same process that you have when a loved one passes away it's a very similar process when you're accepting a diagnosis like that. So it starts with the tremor in her case or it starts other ways. Correct yet there does there's sort of four cardinal groups of symptoms that we see in Parkinson's disease tremor being the most well known. And -- -- it tends to be a tremor rest so in other words when you're not using your hands when you're relaxed and rest that's when we see the trauma. We also see slowness of movement we seek changes in walking and balance and those can sometimes be early tip offs. Classic story that I hear is that. And we were watching watching dad walk and his his right arm just in swing quite as much as the laughed at his feet and -- quite the same on the right is the laugh and and that's often and early tip off. And then something that most. Folks don't notice but that we notice on our exam is rigidity or stiffness in the muscles themselves so when we actually. Move the arms and legs around we feel resistance that shouldn't be there. And those are the the four cardinal signs of parkinson's. It's -- they -- shake your meaning. That -- they shake your your wrist alliger arming to shake your wrist and see if it. Well floppies -- who are not and that seems to be you know pretty definitive nonsense. My beloved grandmother Alice never. Was a secretary and she started with a tremor in her finger him and it started progressing and she was in denial as well and this is a very long time ago and perhaps even the diagnostic ability wasn't what it is today. But she could no longer type and how was it and that's the choose living at north and she moved in with us and so we watched that progression and it was exactly what you're saying. And I became her whole arm essentially are very very violent but very rough. Tremor and than in balance and which as you know so -- settled. Never lost her personality her ever lost respond Q&A and. -- -- know what yeah I'm just so I applaud you well and the other for everything to diet that we believe. And our support group of course we share a lot with each other because we know what's going on. You know. Tactic Copeland. Really you treat says he doesn't know you know what we're feeling. But we believe in living well with Parkinson. And that's just our mantra and everybody is positive and we have. Walks and fundraisers and you know just all kinds of good to good things to do and that's what we say you know every day every day. Stay with this that -- were going to continue talking about parkinson's and find out specifically what is its right after this I'm Angela on that isn't. We are talking Parkinson's disease. With doctor Ronald Copeland who is with the LSU Health Science Center school of medicine -- an assistant professor of neurology. Also a psychiatrist. And -- today we're gonna really pick his brain and also the delightful Bonnie Huddleston who is. Has been. I'm seeing a patient of could you don't look at yourself as a victim at all I don't know and I don't know -- -- -- organ disease so we're learning a lot and I like to go to doctor Copeland saying. What is it. What is this disease. And that's and that's a great question there's no straightforward answer to. In a broad sense we consider Parkinson's disease a progressive neurological disorder. Similar to. Alzheimer's and other other progressive disorder but parkinson's really is very different than alzheimer's -- -- to compare them now. On what happens on a brain level is that there is a chemical in the brain called to open mean to neuro transmitter one of hundreds of chemicals. And for whatever reason in Parkinson's disease the cells that make to open -- start to dial off. By the time folks start to develop tremor walking changes that things that we -- talked about somewhere between sixty and 80% of those cells have already died off. So this process starts long before we ever see folks in the clinic are based noticed that something is wrong. The big question as wide as that happens is it's hereditary. So it can be that is by far the minority of cases so there it there are inherited forms of Parkinson's disease. Makes up of maybe 5% of cases total and these are the folks who tends to develop symptoms. Certainly before the age of fifty but sometimes even in their teens twenty -- Birdies. The vast majority of cases. Develop. Late fifties or older. And we don't know exactly why -- they're probably some combination of genetic risk. And also something in the environment that sparks the process. And what's the process starts it really takes off on its own and and continues from there if you're having a that you're thinking your very healthy and you're just going in for a full physical. And there were no tremors. There would be no way to diagnose. That is correct so so in the year 2013. -- diagnosis of Parkinson's disease -- -- clinical diagnosis miso and other words it's based on our history so. You know what folks have experienced the sequence of events and it's based on our clinical neurological exams. And and really that's all we have to go on so when you do a standard MRI imaging neuro imaging it's normal. So there's nothing on imaging suggested a Parkinson's disease. So as of right now are we still have a clinical diagnosis. There's lots of work. A lot of the spearheaded actually -- and the Michael. Looking at what we call bio markers are trying to find some sort of marker and blind or spinal fluid. War on skin biopsies -- and there are some research is looking to find something that gives us some more accurate diagnosis in an earlier diagnosis. You mentioned Michael. And see the difficulty he has but in reality. It they're saying he's still living and he's still being productive and enjoying his life he still. Funding and absolutely. We go watch that show and it was -- you know actually we had a little party you know for the first show. -- and a couple of the comments were well I didn't really you know the first show -- the second show wasn't really what I thought it was going to be but it's gotten better. And it's gotten deeper and I think that that's what we were you know most of the -- I thought it was wonderful because -- I think he's terrific from the beginning. But I think that we were looking for now the depth seeing him with his family and you know the things it does happen. And he takes in stride which you have to and a wonderful. Funny how did you get over I mean you should you pounded for a year was there a moment when you send. Enough of that. Well yes I. You know I started. Thinking about. The years ahead and and whether they were going to be really good productive. Happy. Was kind of up to me. And them and I think that's when you to say okay dust yourself off and get going. And starting a support group was just the best thing I ever could've done. I put up little signs in grocery stores Saturday January let me put it on the bulletin board and we about I don't know eight. And then we I have progressed now to we have value over maybe a 160 something on on the roster. And and Cynthia and about seven to come -- and it's wonderful I mean is just like we've just become family we really have. And someone said the other day -- -- these people I just so. Fun and in compatible and it's fun to be here and and and that's you know that's striving for and and I am happy about that. Well for both the view when we knew doctor Copeland C patients and certainly when you see groups when someone starts to progress our day. Doesn't throw them back I mean you're going forward all the time with your life but -- something gets worse. Well yeah we talk about that because there are. Well from beyond that I think actor -- -- nine I think you -- Angry you know to cover that every five years he -- at three to five depending on the person of course it all depends on the person. You have a little. You know bump up -- level changed. And we talk about that with each other and you know is it is going to be a change in -- is it going to be a better do more exercise. You know I need to do something. And we're all doing those kinds of things to to help that to prevent that. And it actually exercise we're hearing all over now it because it's is the one thing that all the docs will agree. That. It is the only. Now maybe you know as they stopped the progression but slowing. And that's the main that the magic -- for us yes slow the progression good. Yes and I agree completely Bonnie if you look at -- research that's out it's really the only thing that has consistently. Time and again. Shown evidence -- and animal models and in humans of slowing the progression of parkinson's and literally what kind of exercise specific the interesting thing is it probably doesn't matter everything -- boxing is probably any kind of exercise in general we try to recommend. A relic exercise so that you get the cardiovascular. Benefits as well but in the end it probably doesn't matter. The things it. I hear a lot of patients that they like or things like swimming. Stretching. You know that because they incorporate this idea of stretching in which the cardiovascular exercise soon which helps to really balance the it challenges -- -- it really helps to fight that rigidity that stiffness we -- talking about. And July oh yeah her -- boxer well I think all of us fear the fear that and and really had that in our minds when we do just about everything. There is a group that is just for parkinson's and east Jefferson wellness center. Every Tuesday and Thursday. And they step up on little foam. And take up one leg or the other leg and so on and that's just really really good for -- that's a very good group and that has grown tremendously as well. But G at -- and just went to the am world parkinson's conference in Montreal. Last month and they were doing boxing. Does for parkinson's and it's just incredible it just seems like anything and you -- them the on this very date. If they -- really -- -- LG yeah things tied to your fabulous. Isn't it. Mohammed Ali. Had parkinson's yes correct it's parkinson's was that thought that he had been hit so many times. That could have been a factor probably so. So that's one of the sports that has been directly related to. Degenerative changes in the brain and to Parkinson ism Parkinson's disease RP wanna say it in the idea of boxing is to. To injure your opponent's brain and that really is what you're trying to do. And so repeated injuries like that damaged area of the brain that. Is largely responsible for these to open mean cells are talking about. And that repeated injury probably leads to their degeneration and dying all. And so so what she -- clinically -- EC parkinson's to. And would there be any effect at all and we're hearing so much about concussions -- in football. Any any studies there. So that's. That's a very. Exciting area of research and still very controversial topic to. About how repeated concussions relate to. Various airlines disease is not just Parkinson's disease it's being looked into I don't know that we can say definitively one way or another. But they -- there certainly is this idea of chronic traumatic encephalopathy. Where -- -- See it's sports stars who've had multiple concussions developing cognitive changes his personality changes dementia. And that that pathological when you look at the brains has has been shown. To be associated with -- repeated concussions I'm just -- weakened state definitively one way or the other right now. Stay with us we're gonna continue our discussion parkinson's. After we go to the newsroom with Don -- Doctor Brian Copeland from the college of Health Science Center and Bonnie Thompson our guest today talking about parkinson's. Bonnie and note that I love hearing which is starting to support group and now that you have a 150 people half -- so says volumes love them to a lot of that I would it's about leadership it's about you know they're very comfortable. In with you but if both the view would sort of discuss how this. Disease impacts people. Yes very differently as we've said before. Each one is like a snowflake very very different. Some of the young onset patients. And these are people that. Probably in their thirties and early forties maybe with young children there a couple of those people in our group. And and watching them interact with their children. And house some of them -- little little so they never knew we you know mom without parkinson's than in the older ones news in the you know the difference. And then there's one talented. You know still working. -- every day and has had the deep brain. Stimulation. And that is in the effort there just to maintain yourself. As you were her but are not. And every day you know just it's going to that to add to that workforce and then. I'm looking. And I first I think tremor but come on to amendments. -- -- -- -- I know I didn't know you before but like what were you before. That you're not. Well. I'm I'm against just the same person and that's you know actually better. When I think about it via. So that's that's a good thing and and I think that most people. Except you know those that have different different symptoms. Some people. Present. With symptoms that get. Worse quickly. And that's and that's a heartbreak it's -- -- for them you know and for their family and and they they've progress in the family has to be. Aware and -- in who makes a home safe and those kinds of things some of the men begin to be bent over. And begin to have ended their neck goes down on their back will be bent over and that affects everything that they do and look at and end. I'm also some of them are wheelchair bound or walkers now they'll be -- using a walker. Which is fine and they'd get around and do and and go with and that's the thing don't stop. Don't start your own staff had an article when -- I'm obviously in a variety. Of people with this condition that your. Absolutely and and just echo -- point and every one. Truly is different everyone's on their own pace everyone responds differently to medicines every once symptoms are different. And so. As a clinician. Treating Parkinson's disease we have to take that into account and we have to treat everyone different there really is no magic. Umbrella formula that you can use for every single person you have to individualized. Two to each person who walks in my office. One of the things that I think is is beginning to be recognized more. But historically was under recognize -- than non motor symptoms of parkinson's and so we've talked a lot about the shaking in the walking changes. But we now know that there are our treatments are pretty good for the movements so now what is the bigger issue for people are the -- -- thanks to these are things like constipation. Light handedness. Depression. Depression. Anxiety. And then hey you know later in the disease you you run into. Troubles with memory and thinking. Sometimes you run into hallucinations. And these are things that they have to be dealt on an individual basis. But I would say and -- correct me if I'm wrong I would say for most people that I see. The non motor stuff is probably more disabling the and the motor stuff. Because -- treatments are pretty pretty good overall for the motor. I grew angry with that and I think that. I've read many articles that they are now. There are going in time than on monitor it is really are starting an all of these different. Foundations and because they see. That that the depression. And of course the memory. And into my cameras some sleep I oh wait a second my -- -- -- -- was a big category effort to that we -- -- -- about sleep issues -- days they just can't you know some people just can't sleep at night in their you know on -- -- -- and that's. And it's kind allow only lets you email together as severe parkinson's friends there is still up -- But those those things need to be addressed and I am glad that they are really am. And just listening to you because if somebody is listening to this and they don't have tremors but they may have. Manifestations that you just mentioned Terry -- -- that they may think gee now trying to doctor I should ask. Could -- in other words should they go to a doctor and say here's what's going wrong could it be parkinson's. Right I guess I guess the important thing to to point out is most people who are on medications will have some degree of motor sent it to -- upset that timing I need diagnosis we really based largely -- motor symptoms. But that's what -- are medicines are pretty good and so we treat the motor symptoms -- -- what we're left with are all these other things that. That are still quite disabling but don't necessarily responds well to -- medication. Well stay with discuss well when we come back we're gonna talk about exactly what medications. By activists to. Again we're talking parkinson's. With doctor Brian Copeland a village to and Bonnie Hunt and we have a collar Caroline from applause Caroline. Hot. Not gotten elsewhere park actions in 2000 or. At this point. See Iran has progressed a lot -- you really. The movement problem. And and the confusion -- them greater completely shouldn't it. Our home and we need to go all in other little things like that. But really while calling want to -- them out. I'll win the support group if handled it would benefit from. She is asking. When the support group is held and her husband's. With that her house call. And -- and -- -- confusion issues. As well as as movement. Cocaine. Karen can you me. One. And it can -- or. Perfect would he benefit from support the talent to be dying -- can't. For. 2004 okay. Humor and an easy. Mobile means is he. Mean you is that walker. And the perfect -- -- and use. Them. That's many of -- you know many of our members exactly what I would love for you -- to count. And and the other issue I as the caregivers. Many most of our patients come with their -- their spouse there family member. The person that is there for them. And and they kind of you share things with each other. -- aren't you know which is -- very important as well we meet on than last Monday. Each month. -- except and we don't. Which it's not. Like I have December. So our next me -- next meeting will be. The end of January. 29 sentiments here. The last Monday of January and east Jefferson. On the first floor. In the hospital itself -- if you park in the Hudson garage and take the elevator down. You get out of the elevator and turn right there we are. Website or something that people well we don't yet we're looking for someone to do that forest that we haven't found anyone yet. But it found. Out at 1 o'clock. From one to three. And of course we live in -- -- so we managed to eat them pretty well. During that well and I think it would be a very good one for you to be doctor -- row. Is all kind of renowned. Neurologist in in this city in actually internationally and he's going to be speaking to -- into -- it now so my broker at. There. Yes I -- -- I was fortunate enough to have seen him for a couple of years before he Maryland I'm -- to. Really how you're -- -- -- care. Well -- now. Somebody. -- realize that. You know. It's -- because. You know. And Bonnie and she's out and yeah. Well 00. Appreciate it okay. -- let him calling I appreciate that. We have left talking about the medications that are available so. What is available. So there there are a number of different medicines out there. Different classes of -- sessions and in some way shape or form they all work on the -- opening system that we were talking about earlier. So there's a couple of medicine's on the market that. Affect the enzymes. That break down to opening. And these are medicines like as a lacked Schwartzel -- has an older. A cousin of as elect as like to the brand name -- saddling -- the generic. And then there's not a medicine called into Capone or calm hand as a brand name. And he's allowed to open mean to stick around longer and number in essence and what about this deep brain stimulation this is an actual operation. It it is it is and so. It can be a great therapeutic option for people. -- the essence of the surgery is there's actually an implanted electrode into the brain this is a permanent. Picture in the brain -- it's anchored. And in so many words it creates an electrical. Signaled it jams the abnormal signals in the brain. So these signals that are causing the slowness this stiffness tremor the walking difficulties. It jams the signals and helps to restore some function that was lost. -- a very different way -- the medicines that we have. And we often used in the combination effect there's been a number of studies that show the combination of therapies. -- are probably better than either one by itself. Are is everybody candidate everybody has now -- absolutely -- with any surgical intervention there's risks and there are some people from. A medical standpoint in general medical standpoint -- not going to be good surgical candidates. Even. Otherwise good candidates with Parkinson's disease sometimes are not good candidates because of social reasons you know -- living situation. Those who already have significant cognitive impairment to the point dementia are are not good candidates for this. And sometimes we ran into the issue of people actually having an alternative diagnosis you wanna be quite confident. In the diagnosis of Parkinson's disease. Rather than something. Atypical before you go ahead with this to surgery and. And it's quite dramatic. I know that you have heard me talk about them landing counts. In our group and that when we went to Washington. We do that every couple of years to educate. I'm with the pay an organization. Parkinson's Action Network which works force in Washington and it does marvelous job getting. Monies in funding for research. But down Michelle actually took. She has the implant them both sides like now. Defibrillator looks like. And she turned off. Her remote. Now while we're in the office of of one of media centers and it was incredible I mean the difference was incredible they just they were just done. And then she turned it back on says its use -- and they and her term just came back I mean. She had kicked a hole in the law I think that was was centered to have to get -- tedious in the first place but it was just incredible that it it works it really does it. Changed her life and given her. Activity back. So you're encouraged that the search is continuing that this is -- day. Disease that. People are not getting -- oh absolutely not absolutely not there's there's lots of actor researching and some of it is is on the diagnostic front with a bio markers we were talking about. A lot of it is in the treatment front as well. There's hopefully going to be a new formulation of -- and no book coming out within the next year which will. -- which should help to smooth out there be throughout the day. I'm and then the surgical interventions are always being fine to and so it says one make a point that deep brain stimulation surgery is not. -- investigative anymore it's been around for 25 years it was originally. FDA approved and I think 1997 to this this is not a new therapy it's quite well established. Okay will be right. I can't tell you how much I've learned about parkinson's -- to -- -- one thing doctor Brian Copeland and on Huddleston. Anybody out there listening here's the email parking Vaughn RK IEE -- At gmail.com. Parking bonnet gmail.com. Ever want to talk to someone who knows and has lived it I thank you so very very much know -- -- joined Don names in the newsroom.