Moving Forward: Self-Efficacy: Taking Your Life Back After Parkinson's

>> A lot of us here have been diagnosed with Parkinson’s and that’s a big word Parkinson’s and it includes a lot of different symptoms at a lot of different stages doesn’t it? A lot of different things happen and most of you like me before you were diagnosed had some sort of an identity or a life that was different than being a Parkinson’s patient I had a psychotherapy practice in Denver for 30 years I lived alone in a large house where I was a landlord to young people I had a very active life and then something happened and December 19, 2011 And this was after a period of time in which I had been under a lot of stress My sister was dying of cancer, and I was her, the person designed to take care of her, and I didn’t want to, and I had to do it and keep my practice going as well So I started shaking a little bit, and I went to my primary care physician, and he’d known me for many, many years and he said, you know, Janice, it’s probably just stress Don’t worry about it Wait until things calm down So she died May 1, 2011 It didn’t calm down, and I noticed when I sat with my patients that my right knee started shaking, my right foot started shaking, and I had a hunch so I went back to my doctor He said, oh, it’s probably okay I had a lot of pain in my hips, and I had for years when I would stand up after sitting down lot of pain and stiffness So I went to an osteopath who worked on me a long time and he said, Jan, I think you need to go to a neurologist So I did. And when I went to this neurologist he was young He spent about 10 minutes with me and you probably have all had experiences similar to this, and he sat down and he said you have Parkinson’s I said what? You know, I can’t I can’t do this I can’t have Parkinson’s I said so what is there to do about it? He said, well, there’s medication, but it will eventually wear off Oh, great Thank you for your help And so I left there in shock and fortunately I had already a good support network both with my primary care physician, who was wonderful, and other people in my life So the most important person then that I met at that point was a woman named Diane Cook She was a professional business consultant, and she had been diagnosed 7 years before I was She was older than I was I was 65 when I was diagnosed, she was 70 when she was diagnosed Amazing woman Diane Cook was the kind of woman who took charge So she decided to do this is there a way to organize my brain, attitude and actions to better manage my disease and maximize my quality of life? So instead of getting distressed she got curious What is it that I can do? And so she decided to start something after some research of researching what are the challenges? What are the responses and changes that we all face? So she did a lot of research about it and then she discovered a fellow named Bandura, Albert Bandura and Bandura is one of four eminent psychologists of the 20th Century, and he had something a program called self-efficacy How do you process difficult situations? And so she, oh, this is one of those fun things Okay. She, based on the research she did and also on the comments of 200 patients that she interviewed and her own experiences, she came up with the first set of challenges and decided to try and use Bandura’s work on self-efficacy for handling them, and I’ll talk more about that later By the way if you have questions during this, please raise your hand and I will try and answer that during your my talk rather than wait If it’s a question I’d rather have you wait, I’m going to ask you to write it down

and I’ll say please let’s answer it later Yes? >> What does it say in the purple ball? >> Okay, it says, very good, it says psychological challenges and in the dark balls I’ll help you with that So feel free to ask, and if you can’t see, have me move So what I felt, of course, was shock, it can’t be Who here felt shock or did you pretty much know? You felt shock Remember we practiced, okay, yeah, shock, shock, fear, now what? Yeah, fear We had, I’ll tell you a lot of my learning comes from the self-efficacy learning forum which Diane started quite a few years ago, and I was one of the first research groups through it and one of the women in our group her biggest fear was, and she was about 50 when she was diagnosed pretty, pretty woman, worked, had grandchildren, said her biggest fear was that her husband would have to wipe her butt And I could relate to that except I didn’t have a husband wipe my butt so I was even more worried So then there was anger Why me, right? I had been a good person, I haven’t killed anybody, why me? And its why not isn’t it? And then the future certainly uncertain what about my work? What about my children? What about my spouse? Lots of uncertainty in a future with Parkinson’s especially since it’s a designer disease isn’t it? It affects each and every one of us a little differently And then there was challenging my self-image I was raised in a family that the biggest virtue that you had was to be strong, be tough This was the biggest challenge I faced in my self-image I could no longer be strong and tough, and I’m sure a lot of you experienced that too I know one gentleman who’s in this room who I will not name, but I love something he said He said I used to be able to pick up a cow and now I can’t Now I don’t know how many of you here have that same experience, but it’s that weakness or whatever identity you had for yourself is suddenly challenged, isn’t it? Yeah. And then there’s your family, oh my God what why do I do? If I’m the breadwinner earner of a family, how do I keep providing for them? Dependency I don’t wanted to be dependent on someone to wipe my butt and that’s a hard one especially for men and more men get Parkinson’s than women We have a little easier time of being, you know, a little dependent and vulnerable, but not a lot, not in my family Finances. Oh my gosh, and we had people working who were afraid to say anything because they wouldn’t be bringing an income anymore Anxiety. I don’t know what’s coming and anxiety happens as a psychotherapist I learned a lot about anxiety before this ever happened anxiety is often two things at odds with one another There’s the outside image that you’re supposed to keep up and there’s the inside fear working against it and you’ll get anxiety And then there’s depression and, of course, all of this goes through the grief cycle doesn’t it? And how we handle this death of our self-image So she started looking at all of this and the next thing she noticed and inside the ball it says physical challenges we face a gate disturbance I remember before I was diagnosed the, I was diagnosed in December, and I was at a Thanksgiving party with friends of mine and a friend that I had known for a very long time and who wasn’t always the most diplomatic that she could be said to me why the hell are you walking that way? Ever had that happen? And there’s falling or at least the fear of falling Now for me, fortunately, that’s not been an issue,

and I’ll share with you one thing why I think that might be, but that’s not an issue, but I know for a lot of people it is especially given different ages, things that are going on Slowness took me 5 minutes to get this top button and it’s irritating, but it happens Again in our group in Denver, I’m from Denver by the way, and I moved to Wisconsin 2 years ago And slowness here isn’t so much of a problem at tellers et cetera, but in Denver, everybody is like this, get on with it, get on with it, get on with it and getting your money out in time Had that experience? Yeah, wait a minute, wait a minute, it’s going to take me a while And of course freezing How many here have freezing issues, you freeze? Okay, okay All right I’ve not experienced that So I don’t know exactly what that’s like, but I have an idea and, you know, share it with me if you have something different It’s just you, you think you’re going to move somewhere but you don’t, yeah Now I’ve experienced that and the slowness that I’m going to get over there but it’s slow and then, of course, there’s the obvious tremor, you know, we all, not all of us have it One of my models, my positive models in life never had a tremor So he wasn’t so obvious about it, but most of us are especially under stress Micrography And who here knows what that word means? Okay, let me explain it And this is one of the things I’ve always kept a journal Micrography is when your writing gets really small It’s so small you can hardly see it, yeah, and it’s frustrating You’re trying to write checks or write a note to somebody and you can’t, it’s really tiny And then unpredictability You never know when the symptoms are to be there and when they’re not, do you? Sometimes you feel great, you’re going along and everything is fine and then wham you’re suddenly shaking or something awful is happening Or you plan to be off, have an off day and you feel great and you wish you would have planned something darn it And stress accelerates all of the above doesn’t it? Rushing, having too much on your plate, any of that causes the tremors and the stiffness and something that’s not up there and it’s a big, there two things that are up there and they’re a big deal is pain Who here has pain? Right. Not a lot That’s the uniqueness of it, and I do That’s my, one of my big deals is pain and my guess is and Dr. Mangin can address this later; she’ll be talking with us By the way she’s, I’ll introduce her, she’s wonderful She’s my angel, my movement disorder specialist, and I think it’s from the muscles just doing this and it also causes fatigue And I’ll have fatigue hit me just wham and it’s like a wall Who here has fatigue? Yeah, more of you than pain, yeah So all of those really challenge us and then there’s the societal responses They see our uneven gate or our shuffle, our slow movements and our tremor, our dyskinesia Anybody confused about, it took me a while to notice the difference between dyskinesia and dystonia Dyskinesia is sort of this, Michael J Fox you know this, this thing Dystonia is the more freezing or not being, jerky movements, and that’s obvious I have a good friend and we hang out together a lot and he calls it my dancing He said you’re dancing and it’s the medication usually but and then the masked face and that’s also a sign and sometimes people will misinterpret it won’t they? Yeah. It’s hard Now that’s why it’s called the public disease and we fear stigma and ridicule, misattribution

That again the face thinking that you’re uninterested or you’re dull and boring or you’re drunk That’s a big fear Isolation I know people who have Parkinson’s and have isolated themselves so they don’t feel that societal fear and they’re afraid of judgment by others What did you do to get this? You know, Ali got hit in the head a lot of times, what did you do? You know. So inside there is the internalized responses and this is what we start to feel Embarrassment Lowered esteem Some shame That’s why it’s so great to be up here with you guys You know were all in the same boat so I don’t have to feel this with you, and I hope you don’t have to feel it with anybody else in here Humiliation, loss of dignity, negative feelings about yourself Who am I now? And withdrawal and isolation Our psychosocial changes We may hide our disease How many of you here have not, have delayed telling people or have not yet told people in your life? Several. Yeah, it’s a toughie, it’s a toughie We withdraw from social activity because, again, we don’t want to embarrass ourselves or the people that we’re with and that creates a loss of confidence in who we are Our personality changes I’ve known people who get Parkinson’s who are more angry, and I know people who have Parkinson’s who have gotten less angry So, loss of personal identity Most of us here had rewarding or interesting careers, roles in life, mothers, brothers, fathers, sisters, lovers We did things passionately and suddenly we’re a Parkinson’s patient That’s kind of tough, and we’ll talk about how do we hang onto the things that are passionate for us and important for us? Yes? [ Inaudible ] The distinction between the disease and the medications you take as to the effect of them you mean? [ Inaudible ] They can be There’s still an impact [ Inaudible ] That accentuates, it can accentuate things like crazy, yeah, and we’ll talk about that and being self-efficacious about that So the vicious cycle of this whole thing is we get the diagnosis, we have the psychological effects of it, how we think about ourselves, we have the physical challenges that moves into how we work with the people around us Then we internalize it, then we have the psychosocial changes where we withdraw or really limit what we do, and it goes round and round and round doesn’t it? It can get worse It seems like we’re on a precipice between a rock and a hard place, yeah So then what? Well I, like I said I had the pleasure early on after my diagnosis of meeting a woman named Diane Cook in Denver, and she found in her research Bandura as I mentioned, and he, this is a statement that has guided Diane to do everything she’s done with the support groups she has created Self-efficacy is the belief that one can achieve influence over the conditions that affect one’s life Now that doesn’t mean we control it It means we control a lot of the conditions over our life, and if we believe we can, we’ll do it won’t we? We’ll take the initiative to do it So how do we develop it and what does it address? Socially we get to accept the presence of the disease in our life Acceptance is a big deal because if we don’t accept it then we don’t do anything about it We create partnerships with others if we have self-efficacy

Hugely important There so many resources around us, people who want to help us, our families, our, friends, our doctors, but if we isolate, we can’t do it, but if we feel self-efficacious like we can have an impact, we’ll reach out to those people We develop that support team We replace unhealthy with healthy options This is the hardest thing for me How many here, oh, something else they haven’t mentioned on there as a physical effects loss of smell Who here has lost their smell? A lot. Does it affect your taste? What do you crave that you can taste? Sweets. Guess what’s not really good for you It’s not fair So as far as the internalized, you find the strength from within I have a friend who has another chronic illness and it’s really tough for her, but she keeps looking outside for the solution, you know, this magic pill, this magic person, doctor of God, whatever she looks outside but a person who is self-efficacious says I’m a partner in this I’m not going to look to an external force I’m going to partner with an external force and try some things out Increased self-confidence Over the years, I keep a journal by the way, and I highly recommend and it’s certainly in our support groups, our self-efficacious support groups that we really encourage people to keep journals because when I was first diagnosed as you may have been too my self-confidence went in the toilet And now I’m gaining more and more, and I wouldn’t have known it except I journaled, and I could go back several years and go I had days where I didn’t want to get out of bed because I didn’t want, I didn’t think I could do anything and now it’s better Here I am only shaking a little bit More positive attitude If you feel that you can manage whatever condition you have, you’re going to have some self, a more positive attitude By the way advocate for yourself Don’t wait for someone to come and help you and don’t assume they won’t want to Ask. Most people if they’re healthy really want to help you So you can advocate for yourself Let me see So psychologically self-efficacy helps us gain a sense of control and less fear So if I can manage this a little bit, if I can have an effect on this, I’m going to have less fear aren’t I? I reduced anxiety and depression only once in a while Is there anybody here who never gets down about this? Oh, we’ve got to model you We’ve got to figure out what you’re doing It’s hard, but I snap out of it quickly, and I’ve got some tricks that I do And that reduces the depression realistically optimistic I’m pretty sure nobody is going to have to wipe my butt until I die I’ll probably die first, but I’m not sure what else they’ll have to do for me So realistic optimism means we don’t feel totally in control of something, but neither do we feel it’s totally in control of us In psychological terms, it’s a locus of control, it’s balanced That control slides back and forth Some days, some of the sentiments symptoms seem to control me Some days I can control them So it’s realistic Physical. If I’m pro, I can be proactive about my health care I love my doctors and all the people that help me and I’m proactive about it I keep a journal I make sure they know all the supplements I’m taking, all the weird things I do to help this so they can say don’t ever do that or they can say, okay, keep doing it I understand my symptoms and how to manage them Again what works I love sugar as probably many of you do and it’s the worst thing I can do If I eat it, I feel it right away

It’s no fun So sometimes I eat it anyway I do adhere to my medical regimens I’m very careful about that and stick with an exercise program Did you have a question? >> Yeah, how do you feel it from the sugar? >> Stiff, he’s getting the look It’s stiff I get stiff and I feel swollen My joints feel a little swollen, yeah, but again it could be different for everyone [ Inaudible ] Now we don’t get to beat each other up with this Okay. So how do we develop it? So Diane in talking about this, again, approached Dr. Bandura himself and started to dialogue with him because she was proactive She already was a person who had a lot of self-efficacy before she was ever diagnosed and realized that he had developed a 4-pronged approach, which we use in our support groups Number 1 of the 4 was mastery experience and that is basically set goals and achieve them And at the first set small ones, little ones, but you have to get them in mind and you have to set up a program to accomplish them When you do, every time you do you accomplish a goal you set a little higher one and pretty soon you go I’m mastering my life a little bit here, I’m more in control In our support groups, what we do is we all set a goal at the beginning of our 9-segment program, and we encourage each other to accomplish it We might challenge it and say you know that’s an awfully big goal, and I’ll talk about that a little bit This couple here the woman with the hat was in my Denver group, our first group, and she was a doctor and she had to retire because of the Parkinson’s She and her husband did a lot of things together So now that, they were both retired they made some goals One of the goals was with some other Parkinson’s people in our group to climb at least 1 [inaudible] in Colorado This is them at the top And she was, I think she’s 70 now and this was probably 2 years ago They set a goal and they worked at it They little by little walked first in malls If it was winter, they walked in malls then they walked outside then they started some, you know, we have the foothills and mountains, the foothills walking and pretty soon they were here And so you get a cycle You have that belief I can do this then you have that positive attitude I can, not only do I intend to I can I’m going to put the effort out, I’m going to act on it and when you get the results and you see the improvement you go, okay, I can do the next thing, I can do the next goal and stay on top of it That doesn’t mean we don’t fall down I set a goal because this woman, go back here a little bit, doctor, she did a lot of research She was into research anyway so she did a lot of research and found out how powerful exercise is Every meeting she would nag, nag, nag, nag, exercise, exercise, exercise, and just to get her off our backs we would So, whoops, I’m pointing at the wrong thing So one of the biggest goals that I hope I can get across is very important for you is to set up a support network, and in Denver, this was my support network and some little things will drop off, some things will be added So what I started the reason I found Diane was through a couple named Carolyn and Paul and he had been diagnosed quite a bit before I was and was older, but I didn’t know he had Parkinson’s, but a friend told me and I thought, oh my, I need to connect with him Well he and his wife work with Parkinson’s people one-on-one in Denver to teach them how

to move better because he’s a yoga instructor They put me in touch with Diane Cook, who had the self-efficacy learning forum From there, I can’t even see that thing and I’m sure you can’t so I will have to read it to you I got my support group who became my Parkinson’s friends, and I’ll tell you one of the things I’ve learned is there’s not a braver group of people in the world except maybe Stephen Hawkins And so we went to the 9-month program with Diane and we said we’re not letting this go We had become friends, we’re support groups for each other We continued it and it’s still going in Denver Through that I got connected to the University of Colorado Movement Disorder Specialist, who by the way was my third neurologist I didn’t give up My first one you’ve heard about, and he, I never went to him again The second one was a good neurologist and he partnered with me, but he wasn’t a specialist He was limited, but what was wonderful about him was that he indeed admitted to being limited and if I brought some information to him, he would look it up on his computer right in front of me and we’d partner well let’s try this or try that I also through her we had speakers come to our support groups and there was a young fellow named Matt Zeppelin, who taught yoga, meditation, and Feldenkrais Anybody here use Feldenkrais to try and help themselves? A couple. Feldenkrais is a micro movement study of how you’re moving It’s sort of like micro yoga and really helps train your body So the way it helped me, for instance, is when I get tired I call, I do something I call loping Do this. Anybody here do that? Yeah. And what I’m aware of because of Feldenkrais is what, how am I throwing my body off? And then little bit by little bit I adjust it So he gave classes in that and our whole group went to it It was just wonderful I had a chiropractor help me a lot I still do I’ve got one here Acupuncture Journaling became a huge thing My primary care physician suggested it and here was one of the most wonderful things that happened to me and I hope it happened to some of you When I finally went to my primary care physician and I said I indeed have Parkinson’s, he said there’s somebody I want you to call and it was a good friend of his who had had Parkinson’s for 20 years So I called him and told him what happened and he said two bits of advice Number one, take your medication And number two don’t give it any respect He was still working 20 years later and he was my model He was the first of many So I had all acupuncture, I had a urologist Some of us, unfortunately, have a little problem with that, and I went to see a neurologist I had personal support from friends in addition to Carolyn and Paul who sent me a rebounder, which by the way I attribute to, I’m not sure that’s true, to not falling It’s a trampoline and I get on it and jump up and down every single day So this was my Denver support group, and then I decided to move to Wisconsin Now a lot of people say why would you do that? Well, a lot of reasons and I won’t go into it, but I did And so I started again So I have of primary care physician who is wonderful who sent me to a podiatrist and there you go again a whole system and that’s how I met Dr. Mangin And there will be things, I tried things here that I thought might help I tried tai chi It’s supposed to be really good for you I don’t like it People in Denver, some of the people in Denver, Judith, the one who climbed the mountains tried yoga, didn’t like it, but she didn’t give up She kept trying until she found something she did like which was hiking [inaudible] and by the way the year after that they did the RAGBRAI, do you know what the RAGBRAI is? The bike right across Iowa Yeah. So there are things that you’ll try that you don’t like or won’t work, just keep trying

You’re an individual, you’re unique, you’re not just a Parkinson’s patient What is of value to you? But don’t give up So let’s do an exercise about goals Turn to the person next to you, your partner if that’s them or someone else, it may be a stranger, and talk about for care partners for yourself as well What’s one small step you can take with regard to your Parkinson’s? What’s your intention? Something you could change or want to add or get better at Talk to them about that and if it’s a care partner, what’s a small step to support your partner or yourself? And then what actions do you need to take start that, achieving that goal? When will you do it, how will you do it? Just talk a little bit about that and then switch, and I’ll give you, oh, just about 3 or 4 minutes to do that and then what I’ll do is jump up and down, scream and yell and have you switch So stay with that one person, help that person state if they say I can’t think of anything maybe you can think of something for them and say what would you do if you could do it? And then notice what happens and then when I jump up and down and yell and scream you’ll switch, okay? Okay go. Okay, wrap it up if you can nicely [ Background conversations ] So now you have someone who is going to kind of keep an eye on you with your goal No nagging, just how is it going, how is it going? We’ll talk a little bit about something that makes it even easier Again, the belief, the self-belief that we can influence our thought processes, our emotional state, our motivation and patterns of behavior is a very powerful part of self-efficacy So we’ll talk a little bit more about thought and how to manage that and that’s a huge topic for several talks that we won’t go into but noticing things like what you say to yourself is really important Number 2, that’s number 2 up there, vicarious learning Observe successful models One of the, I never wanted to go to a support group when I was diagnosed I thought I’m tough, I don’t need them, but one of the biggest things they did for me was give me examples of people who had done really well in managing their disease And, again, if we look at Stephen Hawkings, things what he has accomplished since he was diagnosed and even a friend was telling me that toward the end it got so it took him one full minute to with his eye muscle make one letter on his computer to communicate, and he went to the end and he contributed so much He certainly is high on my level of examples But one of the wonderful things about the support group was they brought people in who had started things like climbing Kilimanjaro who had Parkinson’s It’s how Judith and her husband got into RAGBRAI People came in and talked about it, they signed up People who were still dancing, singing, living their lives well and ask them how do you do it and keep them in mind as your vision, your future self what can I do instead of seeing yourself down the tubes That’s a big part In fact, yes? [ Inaudible ] Feldenkrais F-E-L-D, F-E-L-D, yeah she wanted to know the movement program that helped me with my gait, and it was Feldenkrais F-E-L-D-E-N-K-R-A-I-S And I think this program is going to be available online and it will be

in the slide so you can look at too So having models that do well and ask them what you do, how do you do it? Have them as a model for something out there Sometimes for me if I, I need an image of myself in the future that’s positive I call it my future wise old woman, and she’s the model I go for And I see her happy she is. She has Parkinson’s but she’s doing really well and she is doing what as my first primary care physician said it’s a disease you’re going to die with not of So I see her vibrant to the end Important, important thing Positive reinforcement, encouragement to yourself and others In our support group, we are really, we ask about a person’s goal that they set what can we do to help, we notice that you’re doing better We have one man in our group and he didn’t believe his wife when she said he was walking better, but he believed us because we just noticed it So that helped him set higher and higher goals That’s really important positive reinforcement Here’s another really big one, encouragement from yourself There are mornings that I get up or try and it’s really hard, and I find myself saying I’m so tired Well, that’s a command isn’t it to your unconscious mind and it’s going to go, okay, you’re so tired Now I don’t want to give it false information I woke up tired, but I can say to myself in this moment I’m fatigued If I get up and jump on my trampoline a little bit or maybe have a little bit of coffee or tea, I’m sure I’ll be better How many of us talk negatively to ourselves all the time? So, notice what you say to yourself, notice what your partner says to themselves about them and bring it to their attention It’s really important how we encourage ourselves and pat ourselves on the back Psychological feedback, what our body tells us As I was talking earlier about the sugar, my body immediately responds I hate it, I want to ignore it because I like cinnamon rolls, but if I can for 6 days a week skip the cinnamon roll In our little town of Mineral Point, we have a cafe that serves cinnamon roll pancakes It doesn’t get better than that So but I noticed my body doesn’t like it I notice it doesn’t like it on the days I don’t exercise I notice it doesn’t like it if I overcommit, if I’m stressful, if I’m angry, I notice that and I correct for it So that’s important So these fit together like a puzzle So we have when we start setting goals and we accomplish them and we do better and better and better we start to feel a sense of mastery When we add in vicarious learning and add people to our support network who are good examples, good models of doing well and add positive reinforcement and physiological feedback, it all is a network it’s self-efficacy It really works It’s about the power of belief So it’s like how many of you read the book when you were a kid or had it read to you The Little Train That Could? I think I can, I think I can, I think I can and pretty soon you can and, again, it’s how you talk to yourself to get that positive belief and you’re not going to change it overnight, but you do it a little bit at a time So individuals with high self efficacy they keep a positive attitude, they have confidence

in their own abilities although they’re not totally self-sufficient they’re interdependent with their doctors, their partners, their community They become highly engaged, they approach difficult tasks as a challenge not something that stops them, they set challenging goals because of that, they maintain strong commitment to follow through, resilience If they fall down, they get back up again And what does this mean for the quality of your life? Greater tolerance of symptoms They don’t get you down so much anymore Better adherence to treatment regimens Now this lovely lady up here asked me about journaling tell me a little more What do I mean by journaling? In our group, there were several things that we put down to journal when you take your medications, how much you take and as a result what do you notice in your body? What are the physiological, emotional feedback systems? Journaling is important Again, like I said and I went back several years in my journal I found out I actually was doing worse than I am now, which is an encouragement I also can then tell my doctor what medications are working and what’s not, what stresses help me and what stresses don’t because if we don’t have any stress at all, we’re just sitting in a chair So we need a certain amount of stress, but what kind Journaling all of those things what you do, what you feel, what are the results Is that helpful? And that helps with greater self-care because again you have a journal, you have a way of keeping track Healthier lifestyles, exercise and nutrition I’m learning more and more about nutrition and noticing how it affects me Now there’s a lot on the Internet that is bogus and you have to be careful One of the things that we usually do in our support group is have one section where a doctor comes in and they’ve had it here at Moving Forward How do you analyze research and is there research? Your increased ability to cope, less anxiety and depression, and I will say more humor I find the more efficacious I feel the more I can just laugh It’s just funny So these are some of the studies that support this In 2007, Dr. Lisa Schulman at the University of Maryland did a longitudinal study on self-efficacy and found it was the people who were self-efficacious had less disease symptoms and more quality of life And then Diane Cook, who worked with the Colorado Neurological Institute and Dr. Kumar there, did a study, significant improvement in 10 health measurements Stable emotional functioning despite declining physical functioning if it happened Now I won’t go over curriculum right now I’m going to turn this over to Dr. Terri Mangin, who is a movement disorder specialist and a fine neurologist, and have her talk to you a little bit and then I’ll wrap up >> Can you, there that’s better Can you folks hear me, okay? Well, it’s just first of all such a privilege to hear Jan’s perspective and to work with all of you I think I speak for Nancy and Steve and our whole group that we’re just so impressed by all of you, and I think being here you’re already taking the steps to be more self-efficacious and learning how to manage your disease and what you can do So congratulation for here, but I’ll just echo some of the points that have been made so eloquently that we look upon our role as the Movement Disorders Team to really just provide the tools for you to manage this

So we don’t want to impose on you just what we think you should do we want to know what your goals and priorities are and how we can educate youth to achieve those So hopefully that’s what you feel that you’re getting when you come in more knowledge and more tools and if you don’t feel that way, we want to know that because we learn, I think, you know, I certainly learn as much if not more from you than you learn from me and sometimes that’s a way of helping other patients that I see is that I learned from your own experiences So thank you for that So I think we just want to acknowledge that this is really about the perspective that you have If you are traumatized by a Parkinson’s diagnosis, that’s natural I think it’s normal to go through the grieving process that Jan described, but is this purely a traumatic experience or is there an opportunity here for learning and growth and ways that you can get something positive and carry on with the things that you love after learning that you have Parkinson’s disease? And it really does matter how you conceptualize this and how you talk to yourself about it that impacts how you experience things And in Parkinson’s disease, we always acknowledge in clinical trials that the placebo effect is extremely strong and if you think about why that might be if you think that something is positive or something is helping you whether that is your partaking in a clinical trial and you’re in a study drug or you’re exercising or you’re meeting with friends that you enjoy seeing what’s happening in your brain is you’re releasing more dopamine So we want to foster these positive experiences and that will really translate into you feeling better So what our goals are is to make you as resilient as you can be, and I think when I think about the patients or people who have Parkinson’s that I know that are doing wonderfully what they share in common is this resilience, this ability to carry on and how somebody is doing with Parkinson’s has less to do with the severity of the disease, the way that we would score it based on motor symptoms, it has much more to do with your attitude and what you’re taking on and doing about it So I think you have control over that and even if it’s not within your temperament to be a really positive optimistic person, you can start small and build these smaller goals and you can really build the skill set So it’s part temperament and that is, you know, enduring traits that you’ve had your whole life, but it’s also part experience in learning and we can help you with that part And so we just want to really emphasize the aspects of this that you do have control over and when you exercise the control over those things you are going to do better and we mean that sincerely So our role to help you build self-efficacy involves connecting you to appropriate resources whether that’s support groups in the area or exercise classes or working with a podiatrist or somebody who can teach you physical therapy skills We are sort of the triage to those resources that are appropriate for you And then we want to teach you to observe your own observations about, you know, to really what are the physiological clues and psychological clues that I’m getting just like we heard you really want to, don’t let, don’t wake up saying I feel tired this is going to be a horrible day, but you can say to yourself I do feel a little tired I’m noticing that What can I do about it to feel better? Or I’m not swinging my right arm as well I need to be more mindful of that and make more effort to do that So we want you to learn to observe the physiological clues that you’re getting and we want to educate how to interpret those clues and how they might, what the interplay is with medications that we’re providing you and exercise and so on So we’re really here to propose some solutions that might be appropriate, and it’s not a one-size-fits-all approach So the solutions that we offer you hopefully take into account your goals and priorities and what we’ve observed and learned from other patients that we’ve cared for So, again, the 4 ways that you build your self-efficacy is the direct experience So making those small goals and meeting them you we want our self-efficacy to be just beyond our skill set and then extend it, extend it, and that direct experience really builds up our confidence And then the vicarious experience that Jan talked about seeing other people doing well and what are they doing and how can we mimic that? And then the social persuasion piece, which is the encouragement, and that goes both ways

So when we discourage others that can be even more powerful So we really want to be encouraging and supportive of our care partners and the others in our community and that encouragement is so helpful and so necessary to build your self-efficacy And I don’t know if any of you, many of you are probably parents, I am, and this really is in parallel to what we do for our kids and trying to teach them a new skill set We want to encourage them and acknowledge what they’re doing well and name what they’re doing well We want to give them those goals that they can meet and build up their confidence So, thinking back to if you have that experience as parents or as a teacher or training somebody at a job that you work with, these are the very same kind of tenants that you’re going to use for your own work with Parkinson’s And then the physiological factors that Jan talked about So we’re here to try to help you recognize what’s dyskinesia, what’s tremor? Because we’re going to approach that differently and it might, you know, if you come into your visit with some journaling that you’ve done or a list of questions that you have or concerns that you have, we’re going to ask you whether the patterns you’ve observed Are you shaking more after you’ve taken your medications? That might be dyskinesia Are you shaking more as the meds wear off? So we’re going to work with you in your own observations about the clues your body is giving you to try to best treat your symptoms So I don’t know how well you can see this but I just wanted to give you some quick examples of how your neurology provider might help you with each of these 4 skills So if you come in and you say, you know, I’ve noticed my meds work better if I take it 30 minutes before eating protein, that’s your own experience telling you that and we’re here to tell you when we prescribe that medication that it will compete with protein getting into your system So please try to take it 30 minutes before you eat a burger with bacon on it So we’re here to provide education you’re going to build that experience because you’re going to live it And then we try to connect you to resources so that you have that option to learn through vicarious experience Jan mentioned having some mentors who were maybe further along into a diagnosis and doing really well and we try to connect people through these options that these opportunities we have in the area, support groups and otherwise And so you might say, you know, Joe from my group has really improved since he started the rock steady boxing Maybe I’ll give that a try I see that the exercise is helpful and then you go out and seek exercise that you enjoy doing whether it’s boxing or something else because you see how much that’s helped your friends The social persuasion Again that’s the encouragement so we want to encourage you to do the things that are helpful to you and really emphasize how important that is and how positive we view that when we look at our patients across the board And so you might say to yourself well my physical therapist really encourages me I don’t really feel like going today but I know when I go I’m going to get that positive boost that I need to carry on and do my move big exercises for the rest of the week And then the physiological clues You know you might notice tremor or stiffness as your meds wear off or you might feel wiggly or sort of agitated or restless later in the day That can be because of the medications So we’re here to help you translate those symptoms and how to manage them And so we, many of you are probably availed yourself of My Chart So I just thought I’d give some hypothetical examples of how self-efficacy might play out in that forum So we get messages from My Chart from patients all the time and just, I’ll read these to you and then we can vote on whether they show high or low self-efficacy So the first one says I took the prescription you gave me, but it’s just not working I stopped it Can I come in sooner? I need something different So who thinks that shows high self-efficacy? I would argue that that may show lower self-efficacy That you’re giving up a little too soon and that you’re looking for those external solutions where, you know, sure you need some guidance from us and we expect to provide that, but we can’t, you can’t wait for everybody to fix you You have to work towards that goal So the second option here I guess you’re going to know which one this is My meds usually work for 4 hours, on busier days, it wears off early, and I need to take an extra pill around 3 hours So I figured out that some days I need to take 5 instead of 4 Could you adjust my prescription and then we’ll come in, I’ll come in and we’ll talk about it in person

So what do you think? Does that show some troubleshooting and some observing your own physiologic clues? I think it does, you know, and that’s going to work well for you if you can partner with us and take some control and some liberty, and we want to give you that flexibility on a day where you’re busier or you’re awake longer, you might need an extra dose of medications You don’t have to be so rigid about things or wait for us to give you permission This is your body, you’re the one feeling these things, we want to give you the tools to do this well So these are just some ways that resilience and self-efficacy can manifest in Parkinson’s So, you know, maybe you decide you want to participate in a clinical trial or an observational study There are registries that you can sign up for even if there isn’t a local site and that helps the whole community because it advances our knowledge about Parkinson’s disease Or, you know, it might look like you’re working and you want to stay at your job because you really enjoy it and you would like to work for an extra 2 or 3 years is that, you talk with your physicians and your providers Is that realistic? How can we make that happen? That might inform our medication choices so that we don’t have you on something that makes you sleepy during the day So there are ways to achieve these goals and it’s a collaborative process Or you could be like Jan and you could start a self-efficacy group and you could share your wisdom and your experience and your skills with other people because who doesn’t feel better when they’re helping someone else? Have you ever helped someone felt and felt worse? It’s a way to boost your own happiness to do for others and it gets you out of your own head a little bit I think when we look externally and how we can help somebody else that’s really the best way to kind of combat depression and the negative thinking So you always have something to offer, and if you share that, it’s going to help you too And so I’ll turn it back to Jan because she’s doing a really excellent job helping you learn from her own experience and then we’ll take any questions that you have at the end >> How’s that? I’ll try and hold it right here This is an overview of the 9 topics we cover in our support group You can get the full information about this and how to start your own support group on something called PD Self, S-E-L-F, and it’s on the handout dot org But the first module is we talk about adapting to our disease What’s it like start sharing with each other, getting some of the nomenclature for all of the things that happen to us because often doctors will talk about dyskinesia or dystonia or micrography, and we don’t know what that is That’s a good thing to know Acquiring self-efficacy we talk about the validity of it and how to start setting goals and accomplishing them The third module creating your own personal healthcare network, and we share about who are some of the people that can help you and we’ll often have people come in and talk to you about what they can offer just like Moving Forward does by the way Module 4 understanding PD medications and treatments Your realistic expectations about what they can do You know so often the media will hype something the newest thing down the pipe and you’re all excited and guess what Maybe it worked on mice some of the time How to understand that Module 5 benefiting from exercises and neural plasticity We’re finding out the brain is very plastic that’s really exciting When we have a part of the brain that gets damaged, another part will take over with the right exercise, the right stimulation, and we have people come and talk to us about that Module 6 is understanding cognition and non-motor symptoms There are a lot of symptoms we haven’t put up here that you will experience,

and we share them as a group and then have experts come in and talk about how to handle those Strengthening relationships with your care partners, with your doctors et cetera, et cetera Communicating your needs and self-care without being demanding but not holding back Being a partner And then 8 complementary and alternative medicine How do we analyze that? How do we try it? I remember there was a doctor in Denver who I really liked called Benjamin Kluger, and you can see him on YouTube He does a lot of research on brain plasticity and how to handle Parkinson’s And he said to me one time somebody asked in our group, well, how do you know when to try something or not try something? He said if it won’t hurt you, try it I like that but keep a journal And then finally going forward Keeping the tenacity, keep going, the resilience, mentoring others, leading others and helping it is, Terri is so right that helping others I never thought I would be leading a group or talking to you about this when I was first diagnosed, but it has given me the most joy and a new identity instead of just a Parkinson’s patient And I’m going to wrap it up by saying self-efficacy may be one of our most important tools for improving the quality of life for us, for all of us, our care partners as well as those of us who have Parkinson’s And patients who acquire self-efficacy skills may be better able to manage the continual challenges of a chronic, progressive disease and maybe even so it’s not so progressive And Albert Bandura was talking with Diane the other day, and he had a message for you May the self-efficacy force continue to be with you And I will say keep moving Physically, emotionally, mentally and keep moving with the things that are passionate for you Being a father, a grandfather, a lover, whatever it is, a dancer, a painter, keep that part of yourself very close to you and talk to your doctor as Terri said about wanting to keep doing that because she can help you do that All your people can help you So I’m going to say keep moving forward and thank you very much and will take some questions