[Episode 136] In today's Social Work Podcast, we speak with Allan Cole about his experiences with Young-Onset Parkinson's Disease.
Parkinson's Disease affects nearly 1 million people in the United States and more than 6 million people worldwide. It is a a progressive neurological disorder that primarily affects movement. I’m releasing this episode in April because April is Parkinson's Disease Awareness Month, chosen because it is the birth month of James Parkinson, who first identified the symptoms of Parkinson's disease more than 200 years ago.
Full disclosure – before this episode I knew that my childhood hero Muhammad Ali and the actor Michael J. Fox had Parkinson’s, but I didn’t know they had Young Onset Parkison’s Disease. I also assumed that it was a terminal illness that significantly decreased your lifespan like Multiple Sclerosis (MS) (https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269) and ALS (aka Lou Gehrig’s Disease). I was wrong.
And that’s why I spoke with Allan Cole, a person who lives with Young-Onset Parkinson's Disease. He also serves as the Dean of the Steve Hicks School of Social Work at the University of Texas at Austin. And, as you’ll hear in today’s episode, Allan's personal and professional journey is one of vulnerability and profound empathy, qualities that resonate deeply within the social work community.
In today’s episode, Allan shares his personal journey with Young-Onset Parkinson’s Disease, acknowledging diversity of experiences people have with Parkinson’s. We explore the emotional landscape of receiving a Parkinson's diagnosis, the misconceptions surrounding the disease, the difference between disease and illness, living well with Parkinson’s, the need for more research and awareness, what social workers should know about working with people with Parkinson’s Disease, and the importance of empathy and support in navigating its challenges. I appreciated how Allan spoke about his journey in the context of his many privileges, acknowledging that his ability to be vulnerable was a manifestation of his privilege.
In the years since his diagnosis, much of Allan’s scholarship and advocacy has centered around caring for people living with Parkinson’s disease. He has written or edited several texts on Parkinson’s disease, including the 2021 Oxford University Press book, Counseling Persons with Parkinson’s Disease, and two books on lessons learned from Parkison’s Disease: Discerning the Way (Cascade, 2021), and Jumping to the Skies (Cascade, 2023). He also has two books of poetry, Riding the Wave (Resource Publications, 2023) and In the Care of Plenty (Resource Publications, 2021). He moderates a website called PDWise.com, a hub he created for sharing personal stories, experiences, and wisdom gained from living with Parkinson’s, which encourages personal connections and opportunities for learning.
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Bio
Allan Cole lives with Young-Onset Parkinson's Disease and also serves as the Dean of the Steve Hicks School of Social Work at the University of Texas at Austin. He is also the Bert Kruger Smith Centennial Professor in Social Work and Courtesy Professor of Psychiatry and Behavioral Sciences at the Dell Medical School. Much of Dean Cole’s scholarship and advocacy centers around caring for people living with Parkinson’s disease. He moderates PD Wise, a hub he created for sharing personal stories, experiences, and wisdom gained from living with Parkinson’s, which encourages personal connections and opportunities for learning.
Transcript
Jonathan Singer: Hey there, podcast listeners. Jonathan here. In today's episode, we shine a light on a condition that affects nearly 1 million people in the United States and more than 6 billion people worldwide. Parkinson's disease. Parkinson's disease is a progressive neurological disorder that primarily affects movement, and I'm releasing this episode in April because April is Parkinson's disease Awareness Month, chosen because it is the birth month of James Parkinson, who first identified the symptoms of Parkinson's disease more than 200 years ago.
Now, full disclosure. Before this interview, I knew that my childhood hero Muhammad Ali and the actor Michael J. Fox had Parkinson's, but I didn't know they had young onset Parkinson's disease. And honestly, I didn't really know much about the disease at all. I assumed that it was a terminal illness that significantly decreased your lifespan, like multiple sclerosis and ALS, aka Lou Gehrig's disease, which my great grandfather died from.
But I was wrong, and that's why I spoke with Alan Cole, a person who lives with young onset Parkinson's disease. He also serves as the dean of the Steve Hicks School of Social Work at the University of Texas at Austin, my alma mater. And as you'll hear in today's episode, Alan's personal and professional journey is one of vulnerability and profound empathy, qualities that resonate deeply within the social work community.
In today's episode, Alan shares his personal journey with young onset Parkinson's disease, acknowledging diversity of experiences people have with Parkinson's, we explore the emotional landscape of receiving a Parkinson's diagnosis, the misconceptions surrounding the disease, the difference between disease and illness, living well with Parkinson's, the need for more research and awareness, what social workers should know about working with people with Parkinson's disease, and the importance of empathy and support in navigating its challenges. And I appreciated how Alan spoke about his journey in the context of his many privileges, acknowledging that his ability to be vulnerable was a manifestation of these privileges.
And now, without further ado, on to episode 136 of the social Work podcast, living with young onset Parkinson's disease, an interview with Alan Cole.
Interview
0:02:49 Jonathan Singer: Well, Allan, thank you so much for being here on the social work podcast and talking with us today about Parkinson's.
0:02:56 Allan Cole: Thank you for having me. I really appreciate the work that you're doing is very important and really an honor to be here with you.
0:03:02 Jonathan Singer: Oh, that's so nice. Thank you. I think it would be really helpful if you would be willing and able to, to start off by telling us what Parkinson's is.
0:03:15 Allan Cole: Sure. Let me preface this by saying there's no question that's, you know, unworthy of being asked or out of bounds. You know, you can ask me anything. I really think part of what I am after is, you know, trying to make these kinds of conversations more, you know, public and also more accessible. So I appreciate your, you know, sort of treating this as you would a friendly conversation in the audience, hearing it that way.
So Parkinson's is a movement disorder. And so what that means is that it affects one's ability to move, but it's much more than that because it affects one's mood as well as, you know, one's ability to sleep and, you know, all kinds of, you know, functioning that we could talk about. But Parkinson's is really a reflection of the symptoms are a reflection of the loss of neurotransmitters that result in dopamine being produced in the Brain. Right.
0:04:11 Allan Cole: And so if you have Parkinson's, you have a loss of dopamine. There's a part of your brain deep within your brain called the Substantia Nigra. And that's where, you know, the neurotransmitters that end up being dopamine, you know, are made. And over time, people with Parkinson's are losing dopamine because those neurotransmitters in the area in which they're being produced is dying. And so by the time one becomes symptomatic, studies or statistics vary, but you can count on half of your dopamine supply being gone, usually at least. And it only gets worse from there. Its a degenerative disease, so it, it doesn't get better, it gets worse over time.
The rates of progression vary, as do the symptoms with Parkinson's. I mean, the saying within the community is if you know one person with Parkinson's, you know one person, which means its really probably more accurately thought of as a spectrum disease, that, you know, you get sort of a cluster of symptoms. But lets say if they are ten or twelve sort of major symptoms, you know, most people get their own three or four or five, but you don't get all of them right. And so every case looks a little bit different, but it's slow progression.
There is a distinction between young onset Parkinson's, which is what I have, which means I was diagnosed before the age of 50, and then there's sort of more typical Parkinson's, which is most often diagnosed around 60 or early sixties, something like that. Parkinson is not fatal its not a death sentence. It does, for most people over time, cause some measure of disability, but that, too, can range greatly from one person or differ greatly from one person to another. I know people who've had it for decades who are still running long races, even marathons, and people who've had it for much shorter periods of time who, you know, have difficulty with mobility and other kinds of problems. So it's a pretty broad experience.
0:06:29 Jonathan Singer: I really appreciate you providing that kind of high level overview. And so to think about it is this disease that, that has a bunch of symptoms and everybody's experience is different. It sounds like it's very similar to how we conceptualize psychiatric disorders, in that you have psychiatric disorders where there's a whole bunch of symptoms and everybody has a different cluster. And so it looks different in everybody. They respond differently to treatments, to interventions. What they need is different. And so while there is this community of people that has this label, it's very heterogeneous. And so I'm just curious. You said you were diagnosed with young onset Parkinson's disease. So when were you diagnosed and how did you, like, how did you learn about this?
0:07:28 Allan Cole: Yeah, I mean, I was diagnosed seven years ago, about seven and a half years ago in October. October 26, to be exact, is my anniversary, if you will. It'll be eight years in October. So I've just sort of gotten to about the, you know, midway point in my 7th year. You know, Jonathan, looking back, many people will say once they understand more of the symptomology of Parkinson's, they will be aware of, hey, you know, I had some of that, you know, some cases years before I was diagnosed, and that's the case for me. But, so let me tell you something about the symptomology, how it presents, because it is very, it not, it's not homogeneous at all. Right? I mean, it's very, it differs among people, as I've said.
But, you know, the most common sort of, you know, experiences and what most people think of is tremor. Right? So you have hand tremors or you have stiffness, rigidity, we often call it. You have trouble walking, difficulty with balance, things like that. My major symptoms are rigidity, so I really don't have much tremor. I mean, if you look at my hands, you know, pretty hand trimmers are the most common. I get tremors if I'm cold or if my adrenaline really gets pumped up. So if Im nervous before, you know, giving a talk or, you know, doing something, ill get a slight, you know, maybe thumb trimmer or something like that. The pill rolling tremors is kind of that I'm manufacturing that. That's not real. But mostly mine is stiffness. Right. And rigidity. And the medicines that work for most people, Carbidopa And Levodopa is kind of the gold standard. There's a bunch of different medications that we could also talk about, but that's the gold standard.
They work for most people very well for a long period of time, but not forever. Right. Because the disease progresses and you can only take so much medicine, and then you start running into side effects, and then you can move on to different kinds of interventions. But for me, it started with a very slight tremor in my left index finger. And I don't if you can see it, but it's really not there is at all now because I'm on Carbidopa And Levodopa. But if I weren't, it would be tremoring a little bit.
And I mentioned it to my wife, who has always been the designated person in our family to worry about health matters. And she said, you know, you should probably get that checked out. It s probably nothing. And I, I kind of went to see our family physician, who, you know, my wife and I had been with for a long time, coming up on 20 years or 15 years. And, you know, I went in, I told her her name is Robin, and I said, robin, you I'm here to have you tell me I don't have Parkinson's or ALS, because, of course, I'd started Googling and I could tell my wife was a little bit concerned. And I thought, well, maybe I should be concerned, and I don't recommend that, by the way. But I did it.
And she kind of laughed off initially, but then got real serious when she started doing an exam on me. So I knew something was up. And after about five minutes or so, she said, alan, I'm sorry, I cant tell you that you don't have Parkinson's or ALS. I want you to see a neurologist. And that was sort of the beginning of the journey. And so looking back, besides that tremor, I noticed that my left foot would occasionally drag, you know, like I'd, you know, like sort of trip on a curb or, you know, or, you know, a crack in the sidewalk. And it was because I was dragging my left foot a little bit. Very subtle, right?
But there, and you can see on the treadwear of my shoes that, you know, my left tread was wearing it at a little bit faster rate than my right tread. And so I went to see a neurologist first. The first neurologist I saw was not a movement disorder specialist, which is a neurologist who specializes in movement disorders like Parkinson's, very gifted neurologist but didn't work on Parkinson's. And I was misdiagnosed. She said, you know, this is benign. Go live your life. Don't worry about it. And so I said, great, you're my favorite physician ever, you know, but in the meantime, I knew something wasn't right and you, so I made an appointment with a movement disorder specialist and, you know, he diagnosed me in the office and said, you know, we usually do this on just a clinical diagnosis, which is a, I mean, its very rudimentary. Its almost like a drunk driving test. They make, do things like touch your nose and snap your fingers and walk in a straight line and things. And they can tell a lot by that. And, you know, he said, I'm pretty, I'm almost sure, but you're young and your symptoms are so, you know, minimal that I want you to have an imaging test done. It's called a DAT scan, a DAT scan which measures sort of the level of dopamine in your brain. And that confirmed the clinical diagnosis about a week later. And he said, you do, in fact have Parkinson's. So that was seven and change years ago.
0:12:28 Jonathan Singer: Wow. So your pathway to getting a diagnosis was fairly straightforward. Right. And I know a lot of us work with folks whose pathways to figuring out what's going on isn't straightforward, in part because there is no DAT test, right? There's no, there's no sort of physical test to be able to identify what the issue is.
0:12:52 Allan Cole: That's right. Yeah. In a DAT scan alone, you know, my understanding can't diagnose Parkinson's, but it can confirm a clinical diagnosis. Right. So it's sort of a both/and, but, and again, I should say that even seasoned physicians, and I give my primary care doctor a lot of credit because she knew enough to know what to be worried about. But even seasoned physicians are not typically educated to know what to look for. And people miss it. They're good doctors and they just aren't equipped to know what they need in every case and so forgotten the exact data. But it's, you know, upwards of know, 25% of folks sometimes it'll be even a little higher, can be misdiagnosed. It's hard to diagnose.
0:13:43 Jonathan Singer: Yeah. Diagnosis is tough and it, you know, it's this detective work and, and I think it's a really good reminder that the, the challenge of getting accurate diagnosis when folks are working in agencies where they don't give you the time because the reimbursement structure is not set up for you to take weeks or months with some somebody where somebody's motivation to participate in services is not weeks and months. It's like one session or two sessions. And so, you know, for you, you found out that you had young onset Parkinson's disease, and so how did that change your life? And, and how immediate was that change?
0:14:28 Allan Cole: Yeah, before I answer that, let me just tag on to one thing you said at the very end of the last statement you made. You know, it was difficult for me to get a diagnosis, and I have great insurance. I am, you know, fairly knowledgeable about how to navigate the complex medical system. You I have a lot of resources that other people don't have, and it was still difficult. And so I imagine, you know, imagine what it is for some of our clients, maybe many of our clients who don't, you know, have those resources and how difficult it can be. And so that's important for your audience to know as well. So the first reaction I had was to go underground. And so I took about ten months before I told anybody about it, other than my wife, of course, who knew immediately. My doctors knew, and maybe three or four of my very closest friends, most of whom were either doctors or nurse practitioners. Nobody else knew. My kids didn't know. My parents didn't know. My colleagues didn't know, my boss didn't know. And I carried that by myself with my wife, who is an extraordinary human being. And I will tell you more about that, too. But for about ten months, and then it became for me, and let me emphasize here - everybody's experience is their own - and there's not one or ten or a thousand different ways that are sufficient to do it by going public. But for me, carrying the secret is what it felt like. And it became, for me, more burdensome than I imagined.
Telling people I had Parkinson's would be right, and it challenged my kind of fundamental sense of integrity. I was not doing what I was teaching my students was so important to do, namely to, you know, be authentic and to, you know, lean on people who, you know, you need to lean on and model that for other people. And what I was telling my children, Jonathan, was a core value for, for me and I hope for our family. I wasn't doing that. And it became just too much to bear. And, and, of course, I was scared to death to be public because, you know, I was 48 years old. I was kind of hitting my groove professionally. I didn't know much about Parkinson's. I mean, I knew that, you know, besides Michael J. Fox and Muhammad Ali. You know, everybody else in the world was old who had Parkinson's, which, of course, was not true, but I assume that was the case, you know, and so I feared, you know, people having pity for me. I feared people thinking, well, my best days are behind me and my career was going to be over. They weren't going to take me seriously, blah, blah, blah. And none of that has happened, of course. But these are all things I had in my mind, and I had to work through that.
It took me about ten months to do it. I wish I had been public sooner. And at the same time, I think those months, as painful as they were, were part of my process for sort of coming to terms with it myself before I could talk to my parents or my children or my colleagues about it, much less the rest of the world.
0:17:51 Jonathan Singer: I really appreciate you sharing that journey, because I think that that experience of coming to terms with it yourself before you can open the space for other people, you know, you don't know how they're going to respond or react. There are folks that social workers work with for whom coming out could lead to discrimination that could result in unemployment, being, you know, kicked out of your house, like all sorts of things. And so, you know, for somebody with the privilege that you have and the insight into the human condition, and then to be surrounded by people that I assume your coworkers generally like and support you like to have that and to even still be like, and it took me ten months to be out about this. I think that that just speaks to how challenging this journey can be.
0:18:42 Allan Cole: Yeah. For me, it was, you know, again, I know people who I was in a conversation yesterday about this very thing in an interview. And, you know, the person sitting beside me is another person, a friend who lives with Parkinson's. I mean, she immediately, you know, told people, and that was what she needed to do. And I took a better part of a year, and I know people for whom it's been a decade or more before they were able to or wanting to sort of tell the world about it. And again, everybody has to get there on their own. But for me, particularly, because I had, I mean, I was, I had tenure, was a full professor. I had all the sort of luxuries of job protection, if you will, and I was still scared. And so that's just being honest. And I'm not particularly proud of that. But it became kind of something that gnawed on me enough to say, hey, actually, you have an opportunity, if you take it, to try to do something that's good with something that's not good, and maybe use whatever resources I have and my, my ability to be an educator and to communicate with large groups of people and all that that comes by way of the work we do to raise awareness and to educate people and to dispel myths and all of that and maybe make meaning out of something that ultimately, for me, I had to make meaning out of before I could really learn to live with it in a way that was good for me and for the people who, who care about me.
0:20:25 Jonathan Singer: And so did this personal kind of meaning making journey, this sort of personal exploration, the sort of understanding of what Parkinson's was. Did this change your scholarship or kind of your administrative work? Like, did it affect your professional life in any way?
0:20:45 Allan Cole: It did tremendously, and I'll tell you about that. But let me tell you how it changed me personally first, if I can. That's great. Professional as an extension. You know, it turns out that many of the cliches, or at least for me, were true. Right. I mean, I see the world differently than I saw it before I had Parkinson's and, all the advantages I've had and still have notwithstanding, I believe deeply that it helps me see the human struggle, if you will, and hardships and colors and textures and gravity that I didn't see before, perhaps.
I think it's made me more empathic and compassionate. I hope it has. I like to believe I had a little bit of that, at least to begin with. I was, you know, I want to believe that I did. But in all seriousness, it's made me, again, cliched, but I think it's made me a better human, and I hope it has. And therefore a better father and a better partner and husband and better colleague and all of that, because that's what really fundamentally matters to me.
And I hope that my work is better and more layered and applicable and meaningful and all that by virtue of that experience, because that, too, gives it meaning for me that its not a good thing, but maybe something good can come from it. My process really involved a lot of writing and ultimately, you know, being in a part of a couple of documentary films around Parkinson's because, those experiences were, were what helped me process a lot of things that I was sort of trying to integrate into my new self, if you will. Right. I mean, it sort of, you know, the pre-diagnosed self and the post diagnosed self, if you will. At least that was the way I sort of experienced it. And of course, the core of who I am, I think, has remained intact. I believe that is true. And yet I'm also different in many ways with respect to the kinds of things that I have talked about. And I think that's a good thing. And so I put it that Parkinson's is a both and experience. It is both debilitating and something that takes and takes and takes. It can be unrelenting. It is unrelenting, and it presents opportunities to see the world and to experience love and to invest in friendships and to try to model the better parts of oneself, even as one is working on the parts that need more development in ways that matter. So I hope that's true. I believe it is.
0:23:39 Jonathan Singer: Um, and so how did, how did this experience then change your, your scholarship and your, your professional life?
0:23:47 Allan Cole: Yeah, so, you know, I worked a lot on bereavement before, you know, Parkinson's. And so, you know, I knew a lot of a lot about, you know, at least what the textbooks, you know, some of which I've participated in writing, you know, say about it. And I think, you know, they're mostly true. But an intellectual understanding of loss and Parkinson's is a disease of loss and gain. But loss, you know, the experience of that is not always fully captured, probably never fully captured in a, you know, any kind of book. I stayed sort of in the same zone, but I really got interested in chronic illness. Right. And so it, its important to say that I think Parkinson's is one of many chronic illnesses, meaning one can live and does live with Parkinson's like, many other chronic illnesses for a long time. Right. I mean, my life expectancy is about what it would be if I didn't have Parkinson's. Maybe. Most of the literature says about six months to a year or something like that. Right. So its not a marked difference.
But things get complicated for most people, to some measure. Again, it can vary widely, but sort of integrating that into ones new self and, you know, for me, ones new professional self, as it were, again, presents either an opportunity for growth and exploration or going in a different direction.
And for me, I was very sad. But I don't recall being angry about it or kind of asking the why questions as much, really at all, but really asking the kind of so what questions. "Okay, so this is what I'm dealing with.What can I do to make a good life, not despite Parkinson's, but because of it?"
And so it became an opportunity to sort of reframe for a social work type, sort of what the experience could be, not just for me, but for the people I love and for the students and colleagues that I love and want to help develop. And what could that mean? And so I. Deep sadness and all that, but really an opportunity professionally to pivot, not entirely, but to take on some new sort of experiences, you know, both as a scholar and as a teacher.
0:26:15 Jonathan Singer: And so what were some of the things that you came to learn about bereavement or grief and loss through your experience that maybe you hadn't quite tapped into in your previous scholarship or you. How have you engaged with that since your diagnosis?
0:26:36 Allan Cole: Yeah, and I'm going to speak as Allan, you know, not in a universal way, but one thing that I really internalized and sort of learned at a different level is that, you know, at any given point in time, you can bet that almost everybody, if not everybody you meet is dealing with something. Right. It may not be Parkinson's, it may not be physical, but it can be relational, it can be economic, it can be, you know, um, psychological. It can be, um, you know, systemic. I mean, it can be structural. I mean, most of us struggle at some point in our lives for, you know, significantly for reasons that many of us, most of the time, are not aware of. And so my wife, you know, has a shorthand way of saying it that "everybody has their stuff" in that way. It kind of normalizes in a way, you know, some of our stuff can be harder to manage than of other stuff that maybe other people are dealing with. But what's common is this opportunity for a deep empathy toward one another. Right. And compassion. The other thing, and probably, to be honest with you, Jonathan, the hardest one for me, we could talk about why, you know, if you want to, or what I speculate at least, was being vulnerable, right? I mean, I was not socialized to be vulnerable. Can I just say it that way? And much of the ten months, you know, being sort of underground was because of the vulnerability that, you know, I felt like it would require of me to speak publicly about my experience.
What I've discovered, however, is that, and I don't want to overstate this, there is a power in a measure of vulnerability, and especially when those of us who are maybe comparatively less vulnerable than others will. Will risk that. And I had no idea that, you know, far from being, you know, kind of the worst experience of my life, that actually, as I sort of opened myself up to that set of experiences, I feel like I became more human in ways that I wish I had learned earlier in my life.
0:28:57 Jonathan Singer: I think that that lesson about vulnerability is, I mean, it's so powerful. Obviously, lots of folks have talked about vulnerability, written about vulnerability. But, you know, as you said, like an intellectual understanding is very different than living an experience of being vulnerable and seeing that as. As powerful. I did a workshop many years ago where they had this phrase, warriors stand with shaky knees, and it juxtaposed the myth of the person that is strong and can go into battle as being unafraid or without doubts, without acknowledging their own vulnerabilities, with the idea that actually being vulnerable, acknowledging your limitations, and having a community that knows that about you actually makes you really powerful person in the face of adversity. I'm glad that's one of the things that you got out of this, because I suspect that it has allowed you to model that for others who knew you before and looked up to you, but now saw you in a different light and saw you being able to kind of maintain or maybe and even enhance your power through the vulnerability.
0:30:28 Allan Cole: Yeah, I appreciate that very much. And that's been more of my experience than I ever would have imagined possible. Which is to say that I count that as one of the gifts that has come with Parkinson's. And, again, its a both/and. I'm still not ready to say I would sign up for this, lets s be clear about that. But it has made my life immeasurably better in ways that I never would have anticipated. And I say that as one who has a lot of support and a lot, you know, I will never know the kind of vulnerability that many people live daily with from the time they breathe their first breath. I hope you hear my point, that wherever you are, my experience has been, at least for me, that taking the risk toward more vulnerability helped open me up to see the world to be in relationship, and to aspire to greater, you know, humanness in ways that I think have benefited me and those I love and the work that I try to do.
0:31:41 Jonathan Singer: Well, speaking of vulnerability, in telling your story, I know that there's a documentary, the only day we have, where you tell your story. So what prompted you to tell your narrative, right, to tell your story in that documentary?
0:31:54 Allan Cole: Vanessa Reiser, who is a filmmaker, who's a local filmmaker here in Austin, she and I met on another documentary project about four years earlier that was produced by Connecticut PBS, and it was title of that is empowered by Parkinson's. And I was one of the people whose story was told in that documentary. And I was, at the time I was training for the New York City marathon. My part in it was they followed me and sort of my family and what this meant to have Parkinson's and to try to run a marathon in New York marathon at that. So Vanessa and I became good colleagues and friends.
And then some years after that, a couple years ago, she approached me and said, look, I've been thinking a lot about a film on young onset Parkinson's because there's such a dearth of resources and information out there and because of such a different disease, really. And in the film, there's a physician at the Mayo Clinic. His name is Dr. Rudolfo Savika. You know, he says, and I think hes right, and others do, too, that young onset is a not unrelated, but a different disease in many ways than kind of typical Parkinson's that, you know, presents more in, you know, kind of ones sixties and beyond. But any rate, we met on the first film, and we wanted to do this second film about young onset. And this film is really exclusively narratively driven. It's not about, you know, educating people on kind of the science of, you know, Parkinson's. I mean, some of that gets in there, but it's not an educated film per se. Its a series of stories about people who are living with Parkinson's. There are different stages of that development as the disease goes, and their symptoms are different, and they're from different backgrounds and have different histories, and yet they all share. This diagnosis is about telling those stories of how they're living well, not without challenge and not without loss and all of that, but living well and making meaningful contributions to the people and the, you know, communities and the work that they care about.
0:34:12 Jonathan Singer: Sounds like a great documentary. So April 1, 2024, on PBS. And one of the great things about the podcast series is that people will be listening to this episode for years to come. So wherever they find it streaming, you know, you've talked about your experience, learning about the diagnosis, coming to terms with it, sharing it with people, sort of how it's changed your thinking about grief and loss and vulnerability. And then, you know, obviously, you're involved in some of this very public facing discussion about it. What advice do you have for social workers who work in the spaces of long term illnesses like Parkinson's disease?
0:34:57 Allan Cole: Well, the first thing I would say, you know, is we need more research in communities of color around Parkinson. Much of what we know, you know, comes from communities that are made up of folks more like me. You know, we need people of color and, you know, their experiences and their representations within the Parkinson's conversation desperately. So, number one is, I would say, recognize that Parkinson's is no different in that regard.What I would say is, you know, nothing, you know, sort of surprising here, I don't think, but become knowledgeable to the extent that you can and recognize, you know, the myths and the, you know, misperceptions that people have and the sort of opportunities to square the record, I think that's really important to realize...
0:35:45 Jonathan Singer: So let me just interrupt. What are some of the myths?
0:35:48 Allan Cole: Well, that it's an old person's disease, that, you know, you know, everybody has kind of the same presentation, that it's it fatal. You know, those are all just myth or erroneous information about it and, you know, just knowing kind of the basic science of what it is and what its symptomology is. And that this is really important for social workers that, you know, probably at least half, if not more than half of people who have Parkinson's at some point will meet the criteria for a clinical diagnosis of depression, and 40% to half or more of us will meet the criteria for anxiety. Right. So its a movement disorder, but because its dopamine that's involved, that affects your mood, and it affects lots of other things. But mood is important for social workers, particularly those who work in behavioral health.
0:36:46 Another thing is, you know, Parkinson's is a, its a family disease, you know, like many diseases are. And, you know, its a community experience as well. And so attention to care partners is really important, particularly over time. Chronic illness can be difficult not only for the person who is ill, but the people who love that person who is ill and are charged with, you know, providing for that persons care is really important. And this may, on one level, sound like a kind of academic or wonky distinction, but to me, its important to distinguish between disease and illness. And if I could have just 30 seconds to kind of say why disease is about the process, largely biological, physiological u that happens when a person has Parkinson's. I mean, we know, as I said earlier, it's a breakdown in dopamine caused by things that are happening in your brain, and therefore the symptoms look like the following illness is one's unique experience of living with that disease. Right. And so, you know, social workers work at both levels, but I think a lot of what we do is really more tailored toward thinking about illness, in helping the person think about illness in light of the disease. Right. And so I think its a distinction with a difference, a qualitative difference, in both how we approach the experience and also how we seek to be a participant in that experience with respect to support and encouragement and resources.
0:38:34 Jonathan Singer: I love that distinction between disease and illness. And it actually reminds me of an interview that I did many years ago with a clinical social worker who had a diagnosis of cystic fibrosis, which, until recently, when they came out with a medication, it was a terminal illness.
0:38:56 Allan Cole: Right.
0:38:56 Jonathan Singer: And one of the things that this social worker said was that if I can be sick, I can be healthy, right. If I can go into the hospital and get the treatments for a couple weeks, you know, every six months, if I can use the chest compression, if I can do these things, then I can be healthy. And when you said that, that thing about distinguishing between the disease and the illness, what it connected with me is that there is way in which the manifestation of the disease can, for some people, lead to this either perception that they're sick. Right. And that that can close doors and that there can become these structural barriers. They're like, well, sorry, we can't hire you, or, you know, we. I get worried. I'm not gonna. All of these things that sort of take on the, the sort of the sick, which is kind of around the illness, not the disease. And that as a social worker, acknowledging some of these social or structural ways in which people make someone sick or put them into that role is part of what we as social workers have control over. Right? We can address that in a way that we cannot address dopamine levels. We don't know the pharmacological issues. We don't know the neuro biological issues. But, so I really appreciate you making that distinction.
0:40:23 Allan Cole: Well, and let me be clear. You know, I got that distinction from a philosopher named Avi Carel, who's a British philosopher who herself lives with a chronic pulmonary condition. And so, you know, am I am indebted to her understanding as we, you know, as we all are indebted to others for what we know. You know, that's important for me to, to add as well.
0:40:47 Jonathan Singer: It's very academic of you to cite your sources. I think it's great. Let's give credit where credit is due. The idea that any of us own knowledge is, I think, troubling and problematic on lots of levels.
0:41:02 Allan Cole: So can I say one more thing? Just about kind of the professional personal tie?
0:41:07 Jonathan Singer: Yeah, please.
0:41:07 Allan Cole: The other new kind of vista that was open for me, you know, intellectually as well as experientially, was disability and disability studies. Right. And, you know, Ive learned so much before Parkinson's from, you know, people who live with disabilities and so much more since Parkinson's, because I've just had different angles of vision into that. You. I don't consider myself disabled at this point, but I believe at some point, I will have some measure of disability, because most people with Parkinson's do and so, you know, again, i'm trying to use my experience to contribute to, you know, the knowledge and wisdom in some small way that has been built, you know, through the experiences of many who've come before me.
0:41:55 Allan Cole: And you, those with disabilities have wisdom and insights and courage and strength that inspire me. And, you know, selfishly, I want more of right as I try to navigate my own path.
0:42:08 Jonathan Singer: And I think it speaks to this idea that I know folks in disability studies have kind of tried to highlight, which is that there is a sense of othering that happens, you know, in, in ableism, which is that I'm able bodied and you're disabled. You are different from me as opposed to this idea of a spectrum or a continuum or, or what does it mean to have a disability or to be disabled? How does that work? And, you know, and to be able to sit there and say, I'm not yet, but I most likely will be right. And who knows what that'll look like? I think that is an important frame of mind. And if all of us thought about the possibility that, you know, maybe we're able bodied now, but what about when we're not right?
0:42:59 Allan Cole: What we have to learn from people, you know, who maybe you call disabled but have strengths and understandings and bodies of wisdom that I, you know, don't and may never have right by virtue of their experiences. And I covet, you know, learning from them and, you know, being, you know, in solidarity with them in ways that I did not imagine before. The other thing I would add is humor is really important for me, too. I mean, we talked a little bit before we went on the air here about, you know, for me, humor is healing and, you know, Parkinson is the farthest thing from being funny. But, you know, it, its s a terrible disease, and its an illness that, you know, takes on very varying sort of forms and expressions. But, you know, for me, being light about it at the appropriate moments has been healing. And I, you know, I think that's important to name, too. Before we end, with your permission, I'd like to maybe read something very brief that that's part of a post that's actually, you know, you know, part of our promotion of the documentary. But it's really sort of what, what I hope the takeaway is for those who are listening is today at least this, if I, if I could, Jonathan.
0:44:22 Jonathan Singer: I'd loved it.
0:44:23 Allan Cole: Yeah. My fervent hope for this film is that it will become a beautiful and lasting reminder of our deep need for human connections, of unanticipated gifts that may come with a life characterized by honesty and authenticity as concerns our greatest challenges of hope that springs from experiences of solidarity with others who travel difficult in less certain roads, and most of all, of the truly transformative power of community, friendship, compassion, generosity, and love. That's what I'm learning from Parkinson's and more, but that's a lot of what I've tried to convey today.
0:45:15 Jonathan Singer: I think that's beautiful. Thank you so much for sharing that. I think its a great way to end this conversation for now. Thank you, Alan, for being on the social work podcast today and sharing your personal and your professional insights around young onset Parkinson's. I really appreciate it.
0:45:32 Allan Cole: It's been my honor, Jonathan. Thank you very much.
~~END~~
References and resources
Cole, A. H. (2021). Counseling Persons with Parkinson’s Disease. Oxford University Press.
Cousins, N. (1979/2005). Anatomy of an Illness: As Perceived by the Patient. W. W. Norton & Company
Singer, J. B. (Producer). (2014, September 2). #89 - Healthy Sick - OutRunning Cystic Fibrosis: Interview with Elizabeth Shuman, LCSW [Audio Podcast]. Social Work Podcast. Retrieved from http://www.socialworkpodcast.com/2014/09/cystic-fibrosis.html
APA (7th ed) citation for this podcast:
Singer, J. B. (Producer/Host). (2024, April 30). #136 - Living with Young-Onset Parkinson's Disease: Interview with Dean Allan Cole, PhD [Audio Podcast]. Social Work Podcast. Retrieved from http://www.socialworkpodcast.com/2024/03/Parkinsons.html
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