Episode 6: Parkinson’s and Marriage Transcript

Parkinsons and Me Episode 6 Parkinsons and Marriage

Daniel: Welcome to Parkinson’s and Me. I’m Daniel. And in this episode, we’re going to be discussing Parkinson’s and marriage. However, I am not alone. And. Those of you that have listened to prior episodes know that my brother, Brian, who does not have Parkinson’s has been kind and generous enough to record these podcasts with me, Brian, how are you doing?

[00:00:35] Bryan: Doing okay, brother. And it’s a pleasure to be here on the show with you as always want to check in with you. How has your week been? 

[00:00:45] Daniel: It feels like one of those days to where you have. Things in front of you to look forward to him. It’s not blue and dreary. It’s it’s. I have a life in front of me and it’s a good day that my symptoms aren’t too predominant. Yeah. I’m actually feeling pretty good. 

[00:01:04] Bryan: Fantastic. And listeners may recall in our last program, we got into the popular phrase from the Shawshank redemption film, get busy living. Or get busy dying. And on this particular episode, we want to dive into the whole, get busy living topic with something that concerns many of you who are diagnosed with Parkinson’s disease.

[00:01:24] And that is the topic of marriage. Daniel. Congratulations on being married for 17 years. I cannot believe it’s been that long. Uh, let’s share with the audience, how you met your wife and married this girl of your dreams. 

[00:01:39] Daniel: Well, in order to do that, I have to include you Bryan because you were such an instrumental part. Let’s go back and, and fill us in on how things started with you because the ball was in your court. 

[00:01:53] Bryan: Yes, the, uh, as my girlfriend and I, or saying goodbye to 1998 and hello to 1999, one of the things I was really wanting to see from that year was someone coming into your life and making it better. From my memory serves, it was kind of a challenging season for you during that particular time.

[00:02:14] So I inquired to my girlfriend. Is there anyone that you could see would be a good fit with my brother? That’s single has faith, someone he could get along with. So. She had a girl and mind, we were getting everything set up. I contacted you. We’re going to go out as things would have it. It did not work out due to some bad choices on her part.

[00:02:38] Kim was really irritated by that. And you were just kinda not surprised, I think. And it’s just like, whatever. And then we went to plan B, Kim suggested another friend that she had, and this might be a good match. And so I contacted you. You were open to just going out, but the interest didn’t seem to be so much about meeting this new friend as it was just enjoying the time and hanging out with Kim and I. 

[00:03:09] Daniel: Yeah, just from my point of view, I was going, uh, not expecting anything at all. No, I had met your girlfriend. She was super cool. And I was like, wow, this’ll be great time. Just to spend time with Brian and his girlfriend drove up to Applebee’s. There was this girl waiting outside. She was really cute in my mind.

[00:03:30] I was like, that’d be great. If this cute girl was girl, we were supposed to meet happily enough. It was. And in fact, Brian I’ve remember clearly stating to you before we went to the meal to Applebee’s that if this worked out to be anything or enjoyable on my part, I’d pay for the meal for all of us. 

[00:03:53] Bryan: I remember that.

[00:03:54] Daniel: Well, yeah. So, um, we were, we’re having a great time and a great meal and I looked over at. You Brian. And I remember your face still clearly to this day when I said I got the check, you’re very surprised. 

[00:04:09] Bryan: Very surprised because you weren’t given any many hints of flirtation or interest or anything 

[00:04:15] Daniel: I was playing the game 

[00:04:16] Bryan: man.

[00:04:17] So I was looking for things and you definitely were not being obvious then your interest for sure. 

[00:04:23] Daniel: Yeah. I had to ensure that she didn’t know that I was on the inside going sweet. She was intelligent. She was beautiful. We have a lot of similarities together. It was a first date. That was one for the books that as you mentioned, it was a rough season in my life.

[00:04:43] And meeting that, that right type of girl seemed a far away illusion of fantasy, something from the movies that would certainly not happen to me. Uh, my wife and I, we got married. And Brian, I’m still so grateful for that because she brought literally the girl of my dreams. I was able to marry her and it was one of my favorite days.

[00:05:12] Our wedding day, 

[00:05:14] Sam: I will share. 

[00:05:15] Daniel: I will share.

[00:05:16]Sam:  All that life has to offer. 

[00:05:18] Daniel: All that life has to offer.

[00:05:20]Sam:  Our hopes and dreams.

[00:05:21] Daniel: Our hopes and dreams.

[00:05:22]Sam:  Our achievements and disappointments. 

[00:05:24] Daniel: Our achievements and disappointments.

[00:05:26]Sam:  Until death do us part. 

[00:05:28] Daniel: Until death do us part. 

[00:05:30] Sam: Will you repeat after me. With all my heart.

[00:05:34] Jana: With all my heart. 

[00:05:35] Sam: I’ll take you Daniel. 

[00:05:36] Jana: I take you Daniel. 

[00:05:37] Sam: To be my wedded husband. 

[00:05:38] Jana: To be my wedded husband. 

[00:05:40] Sam: For wherever you go, I will go 

[00:05:44] For wherever you lodge. 

[00:05:46] For wherever you lodge, 

[00:05:47] Jana: I will lodge until death do us part. 

[00:05:52] Sam: Having pledged your faith, look at each other.

[00:05:58] I pronounce you, husband and wife. You may kiss your bride.

[00:06:08] Daniel: Since that wedding day. What strengths do you two have as a married couple? I think it’s important to recognize what motivates us now. I am a thinker. It is a strength, but it also is a, an incredible weakness. I think myself to death is exhausting. However, we’re talking about strengths here. I like to plan longterm goals.

[00:06:33] I spend so much time thinking anyways, that is strategic to me in the relationship. I am the longterm thinker and goal setter. My wife is so good about living in the moment and she finds satisfaction in conquering daily tasks. She’s like I said more in the moment at the end of the day, if she can cross off that task on her list.

[00:06:58] Then she’s ready to face tomorrow. I tend to prefer running into an unknown place and where she is much more cautious. I like to jump out of airplanes with the parachute for skydiving. She wouldn’t certainly never want to do that. 

[00:07:14] Bryan: Well, opposites attract. And in this case, it seems like your differences make you guys a strong couple.

[00:07:22] Daniel: I just really think it’s important. To know and understand as a couple, what your strengths are that way you’re not doing the heavy lifting regarding something that you don’t have any skill or your spouse is much more gift than you are and can help you lift that. It’s very comforting. 

[00:07:41] Bryan: So I can imagine those strengths and those wedding vows were really put to the test after your world was shattered in the neurologist office with your Parkinson’s diagnosis.

[00:07:51] Daniel: And we had to find our different ways. As well as together to pick the pieces back out. So for me, after the initial shot began to wear off, I really began noticing that our conversations were dominated by my fear and confusion and understandably so that I was outlined in great detail how my life was over and outlining to her, the terrible things that were going to happen.

[00:08:22] In our lives to come. How does she react to that? I don’t think it was a very good for her at all. 

[00:08:29] Bryan: How so? 

[00:08:30] Daniel: Well, she was my only outlet, which I believe to be very dangerous at that time. I didn’t have any other options. And it was as if I was vomiting poison, we would be discussing something else. Not related to Parkinson’s.

[00:08:45] And I would find myself hijacking the conversation. That’s great that we’re talking about this honey, but guess what? I’ve got Parkinson’s and let’s talk about how terrible it is. I tried to stop, but I couldn’t almost a victim mindset. Correct. And you were just pouring that into your wife very much so after mine denial at first.

[00:09:08] You internalize. I wrapped myself up in despair. I escalated myself because I didn’t know what else to do. I was, I was that’s. The keyword was going to have to deal with this disease for the rest of my life. And I knew I wasn’t going to escape the effects of Parkinson’s. So some time goes by and then you have this epiphany, share it with us.

[00:09:34] Bryan: What happened? 

[00:09:35] Daniel: The epiphany for me relates back to I attack things. I don’t like to be in the dark about something. I would rather attack it, know what’s going on and be prepared for it. I wanted to keep focusing on it. However she did not. I mean, she was retreating into her own denial. I could see her feet just peddling backwards in my mind, trying to back away, but, but be there for me at the same time, but I kept jumping the gap between us.

[00:10:13] She was needing distance and there I was not allowing her to get away because I needed her. To hear me, I needed to sort things out. I knew that things needed to change. So what happened? Something that is very difficult to remember when you’re working through all of this, those of us who have diseases such as Parkinson’s.

[00:10:38] It’s not only us that are affected by this. What I’m saying is it’s not all about me there, our loved ones that want to help and want to be there, but they don’t know how. And when we wrap ourselves in the cocoon of is all about us, we cut off everyone else in our life. And over a period of time, they’re going to stray.

[00:11:04] So rules needed to be established better protect my loved one. I believe our words are very powerful words can tear down walls or they can build walls up to where no one can ever get in. So there needed to be agreed upon times for my wife and I, when it was safer to talk about Parkinson’s I didn’t need to just vomit on her.

[00:11:29] I was careful when I brought up Parkinson’s and as a result, holding back, speaking about Parkinson’s so much that it had an effect on me to where I was not as consumed by it. Now we need to be flexible in how rigid we adhere to how often we talk about it, or when we do, because there’s times to where it clearly needs to be discussed.

[00:11:54] It’s important to me. And not forget about my wife, that she can go anywhere. She wants to, that she can leave and say, this isn’t what I signed up for. And just decided courted her when we were dating and to marriage, I need to continue to court her. Not only because I don’t want her to leave believe, but also because I love her.

[00:12:19] And that’s that means letting other people in as well. 

[00:12:22] Bryan: And how are things going now? 

[00:12:25] Daniel: This is difficult for me to put into words and I really have to hand it to my wife for not getting so defensive. Last week we were talking about this and I just came out and said, I feel like I am getting ahead of you in regards to dealing with Parkinson’s.

[00:12:43] By the time you get over being in denial. I’m afraid that I’ll be so far the road, or at least farther up the road that we won’t be together on this. A theme from episode one is the clock is ticking and I’m running out of time and we’ve always met things head on together. When the effects of Parkinson’s really becomes predominant.

[00:13:12] I want to make sure that we are together. That we’re not mismatched with her being in denial still and waiting for it to somehow affect her and reactively take action. When the effects of Parkinson’s really becomes very apparent that I really needed her to be more proactive and it really is amazing.

[00:13:36] The result. Can I just, I have an amazing wife are really trying to choose my words wisely. It was not an eloquent speech that is for sure. But to her credit, she has been learning much more about Parkinson’s listening to podcast and getting into groups. And she said a few days ago that I’m beginning to understand what you’re talking about, that it’s okay to talk about this and our plans together and not separate, and even the importance of joking around about it.

[00:14:12] Her statement was. If you were the kid about or someone else were the kids, you about one of your effects of Parkinson’s. I would have been extremely mad instead of going along with the joke. So however you can communicate with your spouse, it’s important to do it. It’s understandable to stay in your cocoon.

[00:14:33] It’s understandable to wrap yourself in the cloak of solace and isolation. Oh, we got to get busy living and not dying. We need to continue to move forward, feeling like a preacher. Now, when I talk about this is because it’s that important. 

[00:14:51] Bryan: Well, my compliments to  you, both for taking such a difficult thing as Parkinson’s disease. What advice do you have to those in our audience who are married and one of their spouses has Parkinson’s?

[00:15:04] Daniel: That’s a really tough question. And I wonder. Nine months in. I’m just not capable of answering this question, but I’ll give it a shot. I recommend learning about the disease as much as possible. And that is so broad because it is so vast and it’s so different for each person. However, like you Brian, my wife, and my great friends, having an understanding about what Parkinson’s is.

[00:15:36] Really is helpful for me to convey what I’m feeling and thinking and scared about without having to explain the particular symptoms or the sickness or the outlook that I’m afraid of. And I think a 

[00:15:50] lot of people are very similar to me in this way. I think it’s just very human and to think about if the roles were reversed, if my wife had Parkinson’s and I didn’t, I know it would be very uncomfortable.

[00:16:06] But I hope I would, I would think that I would get past it enough to get into a support group, to learn about how this affects those with Parkinson’s focus, your support group to that age bracket that your spouse is in. And finally counseling. There is such a way that is going to crash over you and your life.

[00:16:33] As a spouse loved one with someone who has Parkinson’s, you have to take care of yourself because if you don’t take care of yourself and you don’t proceed through the process of grieving that you need to, there’s no way you’re going to be able to take care of that other person. Now, when I say counseling, I think a formal counselor specialize in this area is the best.

[00:17:01] However, it can be connected back to the support group, be able to lean on someone else. It can be a very lonely disease for the person, obviously. But also that loved one that spouse that may not be exposed to this information. 

[00:17:20] Bryan: Well, you guys, are to be commended to, because I’m sure 17 years ago when he took those vowels, you had no idea that Parkinson’s disease would be something you would have to experience, especially at this early stage in your forties.

[00:17:33] So you’re to be commended. And I know it’s a one day at a time journey and some days are better than others. But it seems like you guys are hanging in there and doing the best that you can so well done. And as someone who was there at the very beginning, I’m very proud. Of the direction you were trying to go with this diagnosis.

[00:17:53] Daniel: Well. Thank you. And it is a day at a time.

[00:18:05] Bryan: What’s worked well for you out there on the audience, those of you who are married or maybe your spouse has Parkinson’s. We would love to hear your story, Daniel, how can they contact you? 

[00:18:18] Daniel: Our email addresses Parkinson’s and me. Podcast@gmail.com toll free number to call for our voicemail. If you’re in the U S is (706) 873-1656. I’ve left this information in the description of the podcast. So if you’re listening to this. In the podcast player look down in the description and there is a direct link to where you can click to call or to take you directly to our podcasts feed address. 

[00:18:55] Bryan: So many different ways to communicate with us and we hope that you do.

[00:19:00] Daniel: Bryan like a great bow, that is tied for a present, I say we wrap it up and say, let’s conclude episode five. Parkinson’s and Marriage.

[00:19:11] We hope you found some value from the program and encourage you to listen to future episodes. That will be coming to you very soon. 

[00:19:19] Thanks for listening.

[00:19:22] Our email addresses Parkinson’s and MI podcasts@gmail.com. Toll free number to call or our voicemail. If you’re in the U S is (706) 873-1656. You’re listening to this in a pod cast player, look down in the description and there is a direct link to where you can click to call or to take you directly to our podcast feed address.

[00:19:50] Yes. Also, if you have the anchor out, it’s a pretty cool app that you can find on Apple and Google’s. App stores you can search for Parkinson’s and me on the app, tap on the podcast along the top. Right? You’ll see voice message tap on that and you can record a message and it will send it directly to them.

[00:20:18]

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