Daniel : Parkinson’s and Me, my name is Daniel, and this is the second episode of this podcast. The podcast is serving as a kind of a journey, a journal, um, for not only myself and my son, but also to anyone who would like to participate, hopefully to answer some of those questions that you have, or, or maybe mark these questions off of your list today, we’re joined by a very special person in my life.
[00:00:43] He’s very special, not only because he is family and he is my older brother, but also, uh, by the incredible, uh, advocate that he, he has been in my life since I was diagnosed with Parkinson’s. Nine months ago. Uh, Brian, would you like to introduce yourself?
[00:01:01] Bryan: Yes. Thanks for having me on the show, Daniel. And as your older brother.
[00:01:08] Yeah. I’m still amazed that we are even talking about this subject, but I’m glad that you are creating this podcast as an outlet for yourself. Uh, to document it for your son, as you said, but also you’ve got two different types of audiences who are attracted to this podcast. You’ve got those who are diagnosed and are seeking some sort of community, uh, with people who.
[00:01:32] Have this a terrible disease. And you also have people like myself, friends and family who are probably tuning in to better understand what it’s like to go through. Parkinson’s. So I’m kind of that outsider looking in and help maybe a guide our dialogue a little bit. So people who have. Parkinson’s and those who do not both benefit and find some value.
[00:02:00] And that’s very valuable to me. We’ll go into another episode where your viewpoint of when I told you of my diagnosis and what that meant to you as an older brother, as a family member, someone who’s been around my entire life,
[00:02:19] For sure. Because before you tell other people first you have to. Go through an acceptance and grieving process. And that’s going to be kind of the highlight of this particular episode.
[00:02:30] Daniel : Yeah. When, once you get the diagnosis and the neurologist tells you, this is the way it is, uh, sorry, uh, wish the best for you. And here’s some medication. See yourself out the door. Uh, you’re lost in an empty field of. A crater is just impacted your world and you’re left not knowing what to do.
[00:02:57] And that leaves I long journey of how do I accept this? You begin to research it for yourself and you find out that no Parkinson’s is the same for each person. So the acceptance. Is still ongoing. Uh, as I said, I’m nine months and my acceptances. I believe pretty much there that I know there’s no going back.
[00:03:32] I know there’s not any false diagnosis because I have all these symptoms that went along with it, along with the dat scan, which I know is, uh, to distinguish between Essential Tremor and a Parkinsonian disease. But it’s very hard to accept, but along with that comes the grief.
[00:03:59] Bryan: Before we get to the grief though, let’s go back to, it’s very hard to accept because we live in a culture where we’re like, what can I do?
[00:04:07] What can I do? There’s gotta be some. Method to defeat this, this can’t be a no win scenario. So yeah. How did you get to that acceptance point where it sounds like you’re not 100% accepting it, but for the most part, you’re at the stage to where you have accepted your diagnosis. Walk us through that process because there had to be some point to where you’re like, no, I’m only 43 years old.
[00:04:37] Daniel : Right. And that certainly was the case. It was, um, well, my wife was there with me when we received the initial diagnosis and we were thinking this clearly wrong. I don’t have this. I’m too young. And. I don’t look like Michael J. Fox at this point, because that’s the first thing that you allude to in your mind is you have Parkinson’s what a Michael J.
[00:05:03] Fox. But as, as you go along and you learn about honestly, There is a no win situation that there is no winning, no beating this illness. Not, not in my lifetime. Just the research isn’t there. The money honestly is not there. And the market there’s honestly, there’s just, there’s more. Profitable markets. I’m out there with diabetes and ms.
[00:05:35] Clearly getting the, uh, the majority of the funding, which understandably. So you denied for a few months. You’re like they got the diagnosis wrong, but then you begin to see the decline and you think back of the symptoms. Before the diagnosis, because you have it long before you diagnosed, uh, they say, uh, average of a year and a half.
[00:06:03] So noticing those symptoms in myself and listening to others, watching Ted talks, a lot of reading and communicating and forms. You just resigned to the fact fact that yeah, I have this terrible disease and everything. It’s changed. Now, the challenge of that, maybe you can think of it as an opportunity is now, what do I do with this?
[00:06:31] But before that happens, you have this grieving process before you can really move on. I believe. So
[00:06:40] acceptance versus grief. In the previous episode, you shared that your best friend encouraged you to really grieve this and has autoimmune diseases. And so he was able to give you some valuable insights.
[00:06:52] So what did you mean by. Grieving this because walk us through that process and the different stages that you went through. Uh, so others can maybe find some insight in to their own journey.
[00:07:06] Certainly want to say up front that the stages of grief I am. Early on. I’m still working through them. For me, it was important to differentiate the difference between the grieving of let’s say a loss of someone when our mom died, it was a, an incredible, a loss, but.
[00:07:30] As we were talking the pre show, something that you said jumps out and you’re like, yeah, but that’s grieving the present. Um, this is grieving the future and that’s very much the line, the direction. That my friend encouraged me to move in and it’s just instrumental because it’s not a topic that anyone really enjoys discussing or participating in.
[00:07:59] I relate with the following for the future than grief is the realization of the end of something, an unfortunate outcome as the dictionary says and disaster. Um, but for me, relating it to. With me being 43, that is the end of a future that I’ve have worked to, to worked hard to expect, or I expect it to occur.
[00:08:25] Bryan: What did you expect in your future that you are grieving?
[00:08:29] Daniel : I’m grieving getting growing old. With my wife, I have an amazing wife and an amazing energetic son and knowing that I will not be growing old, like sitting out on the porch steps when, uh, she likes to say like when we’re 80, that that’s not going to happen.
[00:08:49] That’s going to, it’s going to happen, but it’s on a very different timeline. Watching my son grow in to a full man and being able to be there for him as a strong father figure for me, I’m having to redefine what a strong father figure is. I have a future ahead. That’s going to lead to growing physically older.
[00:09:13] Much quicker. I’m relating more to an 80 year old physically peers of mine that are in their early to mid forties. And that’s tough
[00:09:26] Accepting that that future looks different, but what can it look like because of the choice to give up? And just waste away or I can go down fighting. So is that future that you expect, or you don’t think you expect, but you really do as you get older.
[00:09:47] Bryan: I imagine that can bring you down in some sort of depression as well.
[00:09:51] Daniel : Absolutely. Well, and just to outline the stages grieve, and these are elusive stages, but I w I wanted it to be a healthy process. And with, with the testimony of my friend, uh, going, it’s going to be so difficult to actually walk through the internet hire process. And the first step on the process is denial and isolation.
[00:10:18] The second is anger. Third is your bargaining number, fours, depression, and five is the ultimate acceptance when bringing up to pression that comes in the form of accepting the finality of the loss. Yeah, acknowledging an express, the full range of feelings that we’ll experience as a result of this new way of life.
[00:10:42] How do I adjust to a life with Parkinson’s and to say goodbye to the way I was before? And that’s where depression really hits hard. If I compare myself to who I was two years ago, physically. It’s a very depressing place. And it’s difficult to keep working through that because the instinct is to run away from the stages of grief who wants to experience this, um, what is the point?
[00:11:13] But I hope we’re a much different outcome instead of this image that I have when I’m depressed of this herky jerky guy that unable to. Complete a conversation without forgetting most of what he says and is handicapped and a chair and unable to move. That’s probably coming from me ultimately. However, I think I’ve still have some time,
[00:11:43] Bryan: But I imagine speaking of time, probably what even intensifies the anxiety or depression is you don’t know. What life is going to be like. Cause there’s more question marks than answers. I imagine.
[00:11:57] Daniel : Yeah. It’s everyone’s journey is different. There is no, no timeline. And that’s something going back to the initial acceptance of, well, what is it going to be like for me, doctor? What can I expect? And there’s no answers.
[00:12:14] There’s some general. Answers that are there, but everyone is, is unique. And especially with the majority of Parkinson’s patients, I’ll call them patients, but their individuals are older. Well, let’s talk about the, the, uh, difference of, um, my relationship with my son, the role that I want to play in my son’s life due to our dad’s lack of positive influence in our life.
[00:12:42] It’s very, very important to me. So I can’t wrestle anymore with my son. And that’s very important to him, but my confidence of control my balance and strength. That’s how to change the idea of, Hey, I can take up a new sport with him. I can join him in that. Well, I really can’t anymore because I can’t swing a club, a bat, catch a baseball, especially if.
[00:13:09] There are these off times with my medication not kicking in. And the, the reality of I’m going to embarrass him simply by being his father, but how much worse is it going to be a dad that’s shaped, shaking and rattling and rolling movements that strong father image I’m grieving that. And there’s anger and that there’s depression and there’s a denial of that going back to our stages of grief.
[00:13:40] Bryan: So it sounds like these sounds like these different stages are you’re wrestling with a lot of emotions, a lot of expectations, trying to wrestle with accepting. What is, what did you do that specifically helped where you’re journaling, where you punching a punching bag? What were some things that helped you through.
[00:14:00] This process of grieving it.
[00:14:03] Daniel : I believe myself to be a fighter. I get knocked down and I’ll stay down for a little bit. And this was a punch that really knocked me down. However, I’ve refused to be a victim. Uh, my entire life is based on the concept of captain Picard from first contact. He smashes glass and screams out the line must be drawn here.
[00:14:32] Well, the line must be drawn here. Regarding Parkinson’s. So I think an advantage of that I, I supremely have is as my friends, um, as my wife is, uh, it’s you, those that have rallied around me. And have guaranteed support that helps with the coloring of the future of what you think the future is going to be.
[00:15:03] Um, exercise because with the diagnosis of Parkinson’s you’re like, okay, how can I beat this? You can’t beat it. Well, I’ll exercise, I’ll lecture size more than anyone else has ever exercised before. And I’ll beat this thing. Well, he, you don’t, you can’t in fact, just coming from working out this morning that I don’t think get the euphoria is of working out the, the feelings of man that feels good working out because my dopamine levels are low and are winding down in my brain.
[00:15:43] That grants shoot that euphoric high. I think the medication and is a very primitive form has really helped, but I’m still working on, on ways to fight this. I don’t know if I just went off topic with your question as a person
[00:16:01] Bryan: Faith, has that helped you in this process of grieving?
[00:16:07] Daniel : Yeah, we’re definitely going to spend a separate episode on this. And I really haven’t, uh, experienced the why meat Lord, I watch has been surprised and maybe that’s on the horizon and something that I’m, I’m going to deal with, but it’s more along the line of. Are you through with me yet? God are you through with me?
[00:16:27] Is this your example of washing your hands, throw in the towel in the ring and saying he’s done because we have a desperate need. I speak for myself, a desperate need to have a purpose in life. And with Parkinson’s that purpose needs to be redefined. That’s not an easy process. And with any relationship, I’m mine on that, where we’re still struggling.
[00:16:57] Bryan: So it sounds like you’re talking about the boxing analogy, almost a Rocky formula to where Rocky gets knocked down. He’s getting back up and he’s still throwing the punches and he’s not doing it alone. He’s got his wife, he’s got his coaches, people in his corner. Um, cheering them on. And it seems like this fighter mindset that you have of getting knocked down and getting back up and having people in your corner has helped you in this battle of accepting Parkinson’s and grieving it very much.
[00:17:29] Daniel : So very. Apt analogy. In fact, um, there’s a clip from, I think it’s Rocky Balboa that I have on my YouTube list is phrases or, or speeches to live by. And one of those is Rocky talking to us.
[00:17:45] Rocky Clip: Let me tell you something, you already know. The world ain’t all sunshine and Raymond, it’s a very mean and nasty place. I said, I don’t care how tough you are. It will be beats you to your knees and keep you there permanently. If you let it, you, me or nobody, it’s going to hit as hard as life, but it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward. How much you can take and keep moving forward.
[00:18:12] That’s how we did it. It’s done. Now if you know what you’re worth to go out and get what you’re worth, but you gotta be willing to take their heads and not pointing fingers saying you ain’t where you want to be because of him or her, anybody cowards do that. And that ain’t too, you’re better than that.
[00:18:34] Daniel : You doubt yourself. You’re like, yeah, but am I going to be able to get back up? And I wonder about the listeners that are listening to this and they’re advanced in their years of having Parkinson’s and they’re going, what a newb is so naive he’ll learn, but with anything in life, You can’t listen to those.
[00:18:58] You can empathize with it and you can understand it and you can understand the desire to stay down because it’s scary and there’s so much to work out, but I’m going to go down swinging. If I go down.
[00:19:15] Bryan: And every day is going to be a little bit different. I imagine not every day you are knocked down and getting back up really quickly. It might take you a little bit longer on some days versus others, correct?
[00:19:27] Daniel : Absolutely. This time of the pandemic is wondering if this is the current eye of the storm. This is June, 2020 and having. Then locked in to our homes for months. I couldn’t get away from it. Do you have Parkinson’s Daniel and this is going to ruin your life.
[00:19:50] I keep going back to, I’m not done yet with my life, but there are days when I’m not moving. Right. I’m not speaking. Right. I’m not able to write or type. Okay. And you have to stop what you’re doing and I’m obey your body, the limitations of it, like, um, nearly every day. There’s a time to where I grow so exhausted where I need a thrity minute nap.
[00:20:15] Now that does not work well in the middle of a business meeting or, um, a project object strategy meeting, or when your son is going play with me are once you do this with me and you’re trying to invest in his life. And you’ve got to say I can’t, I’ve got to take a nap. I just take it day at a time. Can I get back up today? Can I keep on swinging?
[00:20:40] Bryan: During this whole process of acceptance and grieving, is there some positive that comes through, for example, do you embrace the present more because you have an idea of what the future looks like. Do you embrace the present more with. It’s your time with your wife and your family?
[00:20:58] Daniel : Yes. The illusion of you’ve got a lifetime left to live, normally that’s gone. Um, what do you see as a priority? Because time is ticking is a reality. Now, you know, I could have a heart attack or get into a car accident, be dead this afternoon, but we don’t think about that. We think about we’ve got this life head of us.
[00:21:23] Well, I don’t have the luxury. Yeah. Hiding behind that illusion, choosing to be much more deliberate about I’m here with my son. He is this age. I don’t know where I’ll be or how I can be with him. So. In this moment, I choose be fully engaged with him instead of thinking of, of work or what needs to be done.
[00:21:48] I same with my wife, just, just holding my wife. I don’t know exactly how that’s going to go. I hopefully I’ll be able to hold her for. Uh, many years to come. This podcast has very much a sense of urgency of while I have this diagnosis of young onset. Parkinson’s what can I do to contribute to the community?
[00:22:13] How can I offer an olive branch and say, it’s very, dark, it’s very lonely. And you feel very pushed aside by the medical system. But Hey, let’s have communion together. And that means, uh, grieving, um, learning ideas, learning ways to cope and just encouraging one another.
[00:22:36] Bryan: And you spoke about the Parkinson’s community. Not everyone is blessed with your friends and your family, and they may even struggle with accepting their diagnosis and maybe even delaying the grieving process. What do you have to say to those in your audience who are still struggling with that acceptance and grieving, and maybe they don’t have the blessings that you mentioned?
[00:23:01] Daniel : To that person that is going, I’m not going to accept this, or I’m not even going to admit it because then I’ll be a freak show to others. Uh, they haven’t even gotten to the let’s walk through the grieving process. It’s just the acceptance. And what I can offer is a future co uh, you know, we were talking about future being erased in many ways.
[00:23:28] Why do I see the importance of working through the entire grieving process, skipping it, which is so easy to do. Why go through it? And for me, it’s just going to allow me to free up energy. That’s bound up to the shock of the diagnosis and then figuring out what that means to me. The hope is my I’ll have the ability to reinvest that energy elsewhere.
[00:23:55] If I free it up and not have it stuck in the past of, well, I am exactly the way I was when I was diagnosed. That voice is strong. And in my mind, if you try to stay there in the past, that’s where all your investment is going to wind up.
[00:24:16] Bryan: Some great insight there for those of you struggling with Parkinson’s disease. And for those of us who know of someone who’s struggling with it, and this podcast can also hopefully serve as a benefit to both of those audiences as we move forward. Right, Daniel.
[00:24:32] Daniel : Right. And in fact, I have a, uh, an email address where you can actually contact me now, please share, um, As I did not have one of the last episode, but it’s, Parkinson’s exactly how it’s spelled and all one word, of course, no dashes or underscores, but as Parkinson’s and me email@example.com again, this Parkinson’s and me firstname.lastname@example.org.
[00:25:08] I would love to connect. I would love to exchange stories. And I would love to share these stories, successes, and failures on this podcast. And I’m with you, Brian. Uh, joining me, I think we’re going to jump into many things. Just in the U S we have over a million people diagnosed,
[00:25:32] Bryan: and I appreciate you, uh, offering me, uh, to be part of this journey. And I’m definitely looking forward to hearing more of your insights on Parkinson’s disease. There’s a lot more to talk about. Uh, but I think right now is a good time to wrap it up and let people digest what you just said.
[00:25:52] Daniel : Well, if I can end it with the disclaimer, I don’t have this figured out this isn’t a podcast to listen to for formula. That’s going to work for you. It, may, it’s going to be a personal journey for everyone diagnosed and I don’t have it together. And I appreciate you calling the insights for me. It’s just, um, knowledge and nuggets to keep me going until the next day. But thank you. For sure. All right. So this wraps up episode, two of Parkinson’s in me.
[00:26:28] I would love for you to join me for episode three and joined Brian and myself until next time that we.