Parkinson’s and Me Episode 14 Transcript

Episode 14: Friendships That Change Audio

Daniel: Welcome to Parkinson’s and Me. This is episode 14, changing relationships. Hello everyone. Thank you so much for listening. Parkinson’s and Me is a podcast and is dedicated to telling the story of one man. Was diagnosed with young onset Parkinson’s disease, not too long ago. That man is me,  Daniel. And I’m your host.

[00:00:38] This is a deeply personal journey. That includes my victories and tragedies along the way, my older brother and I, we try to balance the despair and the hardships along with some strategies that we’ve discovered, provide hope and speaking to my older brother. Brian welcome to the podcast. The episode, the show 

[00:01:03] Bryan: Feels good to be here, Daniel, you and I, we haven’t recorded in a while and always a pleasure to connect with you.

[00:01:08] And you’ve even if we’re talking about Parkinson’s disease, so anxious to see what’s going on with you, 

[00:01:14] Daniel: Brian, it’s always wonderful connecting with you. You don’t have Parkinson’s. 

[00:01:19] Bryan: That’s kind of what the show is all about the outsiders looking in, and we’re going to be talking about how Parkinson’s changes friendships as we typically do on this segment  of the podcasts.

[00:01:30] We’re going to get an  update about what’s going on in my brother’s world. And Daniel I’ll ask the question, what is going on in your world? 

[00:01:39] Daniel: Something that I discovered by pure coincidence that pertains to the constant pain in my hands, the neuropathy. Well, I take the new pro patch for those of you that aren’t familiar with new pro it’s a dopamine agonist.

[00:01:57] So there’s Carbidopa/levodopa and there’s dopamine agonist, which is a compound that actually activates the dopamine receptors. So a dopamine agonist can work together with carbidopa levodopa. So you will apply this patch once a day. You can think of it as applying a nicotine patch, pumping you full on the dopamine agonist.

[00:02:22] My normal routine was interrupted and I forgot to apply the patch for the entire day.  Something that was so interesting was for the first time, in a very long time. My hands were not throbbing and hurting. So taking this further, I had a two milligram patch, so I was like, well, let me go ahead and try a two milligram patch and see what happens.

[00:02:49] I did this for two more days and the pain in my hands is greatly diminished. Now, the other portion of this is the decrease in the dopamine agonists caused the right side of my body, not to coordinate properly. In fact, it was like carrying around half of your body. So it’s very strange. You’re lugging this sign of your body around.

[00:03:13] So after those days I applied the four milligram patch again, and after a couple of days, days of my normal amount. A Neupro patch, the pain returned to my hands. Fortunately, the coordination and the flopping around on my right side stopped. So I’m not sure what to make of this. I have my appointment for the movement disorder specialist.

[00:03:39] So hopefully he can bring some enlightenment and hopefully a balance to this discovery. This is a future with Parkinson’s continually tweaking medication, because the progression is instantly change in your body. So what used to work? It doesn’t work anymore. You have to increase some doses. While limiting others.

[00:04:02] So that was a huge discovery for me. And hopefully is an insight to anyone else who has been having the same issue. 

[00:04:11] Bryan: Well, it’s good to be updated on what is going on with that part of your world. I understand that you also did a little getaway with some friends. 

[00:04:20] Daniel: Yeah, it’s an annual guy’s trip. I’ve believe I’ve spoken about it in previous episodes.

[00:04:26] There’s a core group of guys that I’ve known four of them since high school and middle school. And one that I met in college, what we do is establish a place that we’re going to go either the beach, camping on a cruise. So we leave our families or kids, our wives, and make sure that these four days are all about celebrating our friendship this year.

[00:04:53] It was to go camping and I say camping very loosely. We were in a very comfortable camper. 

[00:05:00] Bryan: Awesome. Well, this is interesting because I recall these guys growing up with you and. I find it amazing that you guys still interact and are still friends decades later. Most of us, we lose touch with friends. That way I grew up with you guys didn’t have social media or cell phones back in the beginning. And yet. Gotten married. You’ve had kids, you’ve had careers. How is it possible that you guys have kept so close for so many years? When the majority of us don’t even keep in touch with people, 

[00:05:34] Daniel: We’re very unique. It’s a priority for us that we all share is so wonderful.

[00:05:41] We give and receive whether it be emotional, physical, spiritual needs. We’ve been doing this for over 20 years. That’s what’s astounding. So it was kind of a tradition. Now 

[00:05:53] Bryan: I know last year it was eventful. When you shared with these friends at your Parkinson’s diagnosis, for those who haven’t heard the earlier episodes, can you give a brief recap of what happened last year on this guy’s trip?

[00:06:05] Daniel: It was a disaster. I didn’t know anything about the disease and it was just a horrible mess. I vomited all of my fears out. It was only a couple of weeks after I received the diagnosis from my neurologist. 

[00:06:21] Bryan: We fast forward a year. COVID-19 political, racial tensions economy, taking downturn, a lot of stress and strains happening within the last year.

[00:06:33] And here you are combating Parkinson’s disease and finding out more about it and learning to live with it. How have you seen the relationships change a year later? 

[00:06:43] Daniel: In many ways. I feel like they have continued on the road of their life, accomplishing task, experiencing new things, good things. And I’ve broken down on the side of the road.

[00:06:56] My car is just sitting there. I feel like I have lost quite a bit of what makes me. Me and I feel left behind questions before I go on this trip. How do I communicate my new norm? Because they’re going to feel uncomfortable. They’re not going to know the questions to ask in some senses, I’m going to need to educate them on how to communicate with me.

[00:07:21] If I were in their shoes, I wouldn’t know the questions to ask are just need not to isolate myself, fall into my norm. Recently of getting into my cocoon and shutting everyone out. So the question is, are the deep levels of friendships that I’ve enjoyed for 25 years to 30 years. For some something I have to prepare to lose as well? 

[00:07:45] Bryan: Some valid questions.

[00:07:47] And I believe you took your record to uncover some of the answers.

[00:07:51]Daniel:  I’m wanting to bring the listeners kind of inside my world, inside my environment to find out these discoveries. And then you say answers to the question. 

[00:08:02] Bryan: All right. Well, let’s listen in to your guys weekend trip and see how things went for you.

[00:08:15] Daniel: It was great seeing everyone, especially since I’ve been so isolated, given big hugs, being wrapped up in some burly arms to use jokes that I only bring out once a year. The talk about guys, stop, not deep level gut wrenching Parkinson’s disease that you buy from the refreshment stand. It looks like a thermal detonator.

[00:08:40] That’s so immersive. And then you got, you got chewy walked around, high, low walking around that’s like Harry Potter for him. It’s like you taking a Viagara, like me wonderful change of pace. And we did guys stuff. We did fishing also at night, we watched violent movies. John wick and open range was the specialties of choice.

[00:09:07] He’s the one that killed our friend. That’s your eye. I shot the boy too, and I enjoyed it.

[00:09:20] It was wonderful. Just sitting around talking. I’m like, I’m like the guy calling food when he played basketball. Oh yes. Even the face. That’s an awesome movie, man. 

[00:09:35] One of the greatest 

[00:09:36] man. Just turn it back on. That’d be a good one. It was clear to me every one of these men had something that they are very invested in that provides them an, an incredible sense of purpose and identity.

[00:09:51] They were leading and being a part of something that they believed in. Now, this included missions, outreach programs, moving up the corporate ladder or being fully invested with the activities of their kids. These are wonderful things. And I celebrated with them and I was so proud of their accomplishments and they were going back and forth, sharing their successes and their set backs.

[00:10:16] Then it dawned on me, what did I have to share? It was a continual reinforcement of. My metaphor, my car being broken down, stranded on the side of the road and being left behind. So I could add this to the conversation. Hey guys, would you like to hear about the life of a man and his family being blown up and shattered apart by Parkinson’s?

[00:10:40] Let me share what has been like to piece my life back together. They’re one piece at a time. However, it doesn’t work because I have so many critical pieces missing. I was sure we were going to have some great conversations about Parkinson’s and to address their questions. Oh, and two friends, hesitantly inquire, and then.

[00:11:02] Never brought it up again. Now, granted it may have been due to my friends, making a conscious effort to not want me to think that Parkinson’s defined me. They were respecting my initial instruction. Then I gave a year ago to not treat me like an envelope, whatever the case, I felt very lonely during the trip.

[00:11:22] Also, it took a lot of work to ensure I wasn’t drinking, tagging the others down. And you hear from my report. It’s sleep was not in abundance at all. It’s morning, two of the guys trip so far, I am up very early this morning because I can’t sleep. We’re all jammed into a camper. That’s a very nice camper. I will admit that, but it is cramped and it doesn’t do good for someone who at the best of times, Finds a little comfort when he sleeps.

[00:12:02] So, um, during this time it is been very challenging and, uh, these symptoms of my Parkinson’s have definitely grown more noticeable with little sleep. This, um, this has been tough. This part’s been tough. So checking in and being real. Now being back from the weekend. I recognize now this was the time of me instructing myself of things that I could no longer do that I couldn’t clear the area quick enough because I was going slow.

[00:12:39] So there was some inpatients that I felt so, Hey, I can do it faster. Was what was implied. So why don’t you get out of the way? I can’t afford that lifestyle. I can no longer play that sport any longer. I can’t reach the goals I believe I once did. And we talked about, I felt I no longer had any good news to share the list of things that could not do were stacking up so high or becoming so heavy that I was simply overwhelmed.

[00:13:13] I realized that for the past year, these men, they move forward. What have I been doing? I’ve been surviving in many ways. I’ve been dying. So there was a spark that came to me one afternoon. It was in the camper when all the guys were gone and I had it for just a moment where. That mindset shifted from survival to living.

[00:13:39] And there’s a huge difference between the two and the things that I could actually still be doing that I’m not sentenced to merely surviving. That’s wonderful getting out of the house and got my mind off of my own issues for the first time. I not only saw a spark. In me or experienced the spark ending.

[00:14:04] How can I actually thrive? There’s still some business entrepreneurial ways, I guess, a continuation of art. How do I keep living and living? Not just surviving. It’s interesting and refreshing. My life’s not over yet. There’s a spark. I’m a big believer in changing my mindset and redefining what I do can do.

[00:14:28] Where do I begin? There’s this mountain of can’t dos. Well, what I can do, it’s create a list of things that I can actually do, and I can keep them on my phone. Phone. So I’ll always have it with me. I’m going to add a new thing every day. This will allow me to at least have my list up of things that I can do on a daily basis to remind me.

[00:15:01] The weekend was eye opening. There was finally a glimmer of blue that I could see in the sky after a year of nothing but stormy skies. I do have value and I’m still capable of performing tasks that others simply came to regarding my friendships with these men, I have to accept that I may not be able to keep up with them like I used to, and they’re just so busy with their own lives and busy with succeeding for their jobs.

[00:15:29] Families churches, et cetera. And it’s not a bad thing and I don’t blame them. So what I may be able to do is stay close to one or two. If they’re willing to continue to invest in my life where I’m at now, not where I used to be because I am eagerly wanting to invest in their lives. My life has been forever changed by Parkinson’s.

[00:15:54] And I do need those that can accept me as I am now. And for those of you that know someone with, Parkinson’s keep asking the questions, even if they’re not what you think is the right questions. And it’s much better to admit that you don’t know the question to ask and maybe you’re that person that has Parkinson’s.

[00:16:15] And you’re thinking to yourself, there’s no way I can articulate this. I’m not a communicator. And I feel that I’m losing modern relationships. Well, I believe that the takeaway is we have to keep trying as clumsy as in a being, but we have to be the ones that communicate. To make sure that the doors open for our friends and our loved ones to walk through

[00:16:43] Bryan: Some interesting insights and to your guys’ trip weekend. And it seems like you’ve had various takeaways, some positives and some struggles.

[00:16:53]Daniel:  It really saddened me about the possibility of losing the friendships. Emphasize that what I discussed in that piece are certainly not the facts. 

[00:17:05] I understand these are observations that I made. I knew that going in that this was my side of the story and I have no doubt. The depression, anxiety, the loneliness, and my medications were wrapped in to that perspective that I shared. So maybe it’s not as sad as I’m initially thinking, but we’ll find out. 

[00:17:29] Bryan: A question that I came away with after hearing your thoughts about the weekend is for outsiders like your friends, what is the more valued gift giving you a weekend to not focus on your illness and make it kind of feel like old times, or just bringing it up in conversations and offering support?

[00:17:49] Daniel: Hmm. That’s a really good question. I think it was a huge gift not to think about Parkinson’s to go and have fun. However, I would have liked to have brought it out more. And I feel like I didn’t get the chance to do that.

[00:18:06] I just think it’s best and much. Like the guys were exchanging what was going on in their lives that I could include Parkinson’s and what’s going on with me and the subject not to be taboo. And I feel like I didn’t communicate this well, chalk it up to a learning experience. So the guy’s trip next year is going to have to look different.

[00:18:29] There’s just going to have to be some limitations. That’s what a life with someone with Parkinson’s has got to understand. And it’s up to me to communicate that properly. 

[00:18:40] Bryan: It seems like for outsiders like myself and your friends, and maybe people out in our audience finding a balance of. Talking about it, but not focusing on it is something that you recommend?

[00:18:55] Daniel: Balance looks like where the person that has Parkinson’s feels free to discuss what’s going on with film and what’s happening in their life in regards to Parkinson’s.

[00:19:07] However, for not to dominate the conversation as it has a tendency to do, or at least I have a tendency to do that. And for those that don’t have Parkinson’s and that person with PD is probably going to try to push you away. That’s when it’s so important to keep pressing in with a respectful distance at first, allow them to grieve and go through the process and then take some risks and move in closer.

[00:19:35] It just can’t be a one way street on either side. 

[00:19:39] Bryan: Well, I know it’s difficult for outsiders like myself to figure out. How to handle situations like that. So we definitely appreciate you sharing your insights into someone who has this disease and some of the things that you need and social encounters, whether it’s with family or with friends.

[00:20:04] Brian this is something that we’ve been teasing along the way is when is the season going to end? And I think we’ve got some answers. The next step is sewed. That’s going to serve as the last episode for the season. 

[00:20:18] We’ve journeyed through a lot of topics and it all ends. At least the season ends. Next time.

[00:20:24] What can we expect from this final episode of season one? 

[00:20:28] Daniel: The theme of the podcast is turned into keep moving forward. What are we moving forward to? We need to have a goal in mind, some things that we want to achieve. We’ll be talking about that. Also, we’re going to discuss what season two will look like and just final wrap up as some things that I haven’t shared throughout the episodes that I’m wanting to save to the last episode of the season.

[00:20:56] Bryan: Right. And of course, as always, we appreciate your comments and feedback. It’s coming up. Daniel’s going to share that information here with you, Daniel. Thanks for inviting me on the program. I have enjoyed hearing your insights and thoughts and what’s going on in your world. 

[00:21:11] Daniel: Thank you, Bryan. I know it’s not just me thanking you, but thank you for my son later on down the road.

[00:21:20] And for those that are hopefully getting something out of listening to this podcast. 

[00:21:25] Bryan: Yes. We hope that it makes a difference and other lives as well as our own. 

[00:21:30] Daniel: Thank you for listening, we would love to hear from you. If you would like to leave a voice message, then call is (706) 873-1656. Or you can email us at Parkinson’s and me podcast@gmail.com.

[00:21:48] Finally, we would appreciate it. If you would give us a five star rating and on Apple podcasts, Google podcasts, Spotify, or ever, you listen to the show. Until next time, keep moving forward.

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