Hi, welcome to Parkinson’s and Me.
This is episode 15, our last of the season.
Hi, my name is Daniel. I originally created this podcast as a creative outlet that I needed. Also, it’s to serve as an archive for my son of my struggles, my triumphs. But also I wanted to offer something unique to the Parkinson’s community. So each episode.
Builds on top of one another, so episode 8 builds on Episode 7 to give a perspective in a view of my journey forward having newly diagnosed young onset Parkinson’s disease and each episode is targeted at specific topics that I’ve found that are not often discussed.
I am blessed and grateful to have my brother Brian who does not have Parkinson’s join me on these episodes. Brian, thank you.
You’re welcome, Daniel. And I’m just the older brother who’s trying to atone for my sins. Of all the hardships I gave you while growing up so.
I keep flogging you, yes.
Getting you to do these episodes.
I’m striving to create better memories in the present.
You’re doing good.
And it’s hard to believe that it’s coming up on a year since you told me about your diagnosis with Parkinson’s disease, and I still remember just being shocked, stunned an not understanding.
The illness, so as we kind of reflect on season one here, I’m glad to have been a part of it, because by talking about it is certainly helped me to better understand this disease and to better accept that you have it.
Brian, that is certainly the goal of the podcast is for those who have the disease and for those who don’t.
And you ask questions that I would not know to ask we’ve.
Covered many topics and as we approach this last episode of the season, what are we going to be getting into for this episode, the.
Theme of the podcast has been to move forward. This episode is going to deal in some part with what are my goals moving forward?
While we take a look back at some previous episodes and here’s a clip of me when I first launched the podcast, I went to a neurologist who basically looked at me after several visits and said I can tell you what it’s not.
But I can’t tell you what’s wrong with you.
Freakishly enough, he’s a Parkinson’s specialist.
And he guaranteed that I did not have Parkinson’s.
We’ve come a long way since that initial first episode, which I wasn’t even featured on. I didn’t know what I was doing. I was trapped in the house with Kovid having Parkinson’s losing my job and needing an outlet. Initial reasons for doing the podcast was.
To record these thoughts for your son and Speaking of your son, he is celebrating quite the milestone here. Can you give us an update on what’s going on with your boy? Yeah, he is turning 12 years old, which is amazing. He is looking much more like a.
Teenager closer to a teenager, acting closer to a teenager, but it’s still my sensitive and wonderful little boy that I am so blessed to have.
I believe they call that the tween years.
Yes, I’ve experienced my first rejection when it comes to his peers.
Last night when I was dropping him off at Church for Youth Group, he was like Dad, can you kind of stay in the car and not come in an yeah I was like OK and I knew it was coming. That was my first and I don’t think that was due to my Parkinson’s or anything regarding that. I just think it was.
I don’t want Dad coming in.
Well, you’ve done a great job. Both you and your wife and raising him an no doubt despite the changes that are happening to you and your son, you guys will keep moving forward and how you raise ’em and I have no doubt that you will become the young man that we will be proud of.
I hope so.
Just getting ready for that next phase.
Well, one thing that helps in moving forward is to look back and see where you came from and kind of summarize those experiences. So let’s do that here on this episode. Looking back on season one and you started out in that very first episode stating that this was a personal journey that started out from a 43 year old man.
Diagnosed with Parkinson’s that is trying his best to face it and not become a victim. And you also stated Parkinson’s rips away the illusion I had when it came to my plans later in life. Where are you at now with that mindset?
Parkinson’s sucks is torn away. Goals that I had for my life.
And left me a physical emotional financial mess and has torn the hearts of those that I love. Ann is seriously limited. My future. I’m up trying to make the best out of it, so it’s a balance whether to live with Parkinson’s or call it an enemy. And through these episodes I feel like I’ve been running.
From it, those of you that are familiar with Indiana Jones and the law start similar to that intro where Indiana Jones is running from that huge Boulder. And if he slips trips or falls in any way, then Indy’s adventures are over. He is a dead man in this metaphor. I am.
Indiana Jones running from that huge Boulder and I feel like I have to stay ahead of Parkinson’s and I’m constantly moving grasping because I don’t want to get crushed by it.
And listening to me say that lets me know that I’m a place of desperation. So right now what’s keeping me moving forward. It’s fear. I want to look forward and see what is ahead out of curiosity and not out of fear in my brain. I know that the faster that I run.
The more I wear down my body which allows Parkinson’s to have a tighter control of me, so the skies have cleared a bit. The next step is more balance, less raging at the Sky, and more living with intent.
You also stated that part of that process and a friend had told you this was to make sure that you grieve it.
Refresh your memory. What does that mean and where you at on the grieving process today? Yeah, you referring to my best friend who young in life had several autoimmune diseases and he really had a limit how he lived his life. Well, when I told him about the diagnosis of Parkinson’s, he kind of pulled me to the side and said.
Bro, I’m just going to let you know that you need to go through the grieving process. The grieving of what you lossed of what you’re losing now, but also what’s to come and you have to complete the process if you try to cheat or get out early, it’s constantly going to be chasing you back to the Boulder analogy. However, if you walk.
Through it there is peace on the other side, so I have really taken to that advice.
Early on we also talked about the importance of sharing your condition with others, briefly refresh our memory what that meant and where you’re at today.
Is going to be different for everybody and it’s your decision on when to choose.
Whom you’re going to tell about your diagnosis, whether it’s loved ones, family, friends, work. A lot of thought needs to go into that decision, because once you make that decision, there is no going back. There. Have only been a select few people that I have told that I come in contact with that see.
And talk with me on a consistent basis. However, for most people in my life, I haven’t told them and this decision is really tricky when it comes to your career. Whether you have a job that’s going to remain secure if you tell your coworkers and managers that you have the disease, or if that’s going to put you in jeopardy.
That’s very, very tough. An is draining. It just is.
This disease impact you, your family, your friends, but you also talked about it impacts your career, especially being in your 40s. Your work, something you take a lot of pride in. There’s no doubt that this disease has had an impact on it.
Yeah, since we were just previously talking about.
Career or when I was diagnosed I felt like I was at the top of my game. I was working for a multibillion dollar company an I was the lead on a project that was huge. I got the diagnosis and then you have to work through that while still focusing on work. Well then the pandemic hit and then my company started.
The layoff process. Well, I survive some rounds of layoffs, but I eventually was laid off as well. Now, if you’re trying to get a job with Parkinson’s, there just aren’t many positions that are seeking someone that has trouble using both his hands, poor coordination and doesn’t walk right and needs a nap, maybe.
But not at a known time that you can work around now. I’ve been blessed and have received some contract work that allows me to work from home, a topic that we addressed mid season was the limit of quality time compared to your peers made an approximation. And that is for 10 years to where I feel like.
Have my mobility before it really begins to deteriorate. There may be less time, but there may be more, and if it’s more that is great and what this does is create an incentive for me not to get stuck to actually do the things that I’ve always wanted to do. Travel to places that I would have normally waited to go.
Skydive I’ve I’ve jumped out of a plane before with a parachute, but I’d like to do that again. Want to be more spontaneous and and live with intent.
Probably one of my favorite episodes of the season is where you invited your wife Jana on the program. The two of you talked about how this disease.
Impacts your marriage. There are.
A few things that will test a marriage like a neurodegenerative disease. We’ve been working on all these hopes and dreams and we’ve worked hard together and are excited about the future ahead and all of a sudden Parkinson’s changes all that.
And how is she doing today?
Jenna has been stronger than I could have imagined. She is so kind and desperate to help. Honestly. She and my son are the big factors for me not giving up. Imagine that you’re in a house with everyone in it and you’re going about your normal duties. Then all of a sudden a huge explosion happens.
Shrapnel is sent everywhere and it’s loud, and it’s disorienting and that shrapnel. It cuts Jana and my son, they’re injured, are home destroyed, everything we’re looking at is in ruins, but the smoke is beginning to clear, so you have to rebuild.
On another episode we took a comment.
Phrase that we’ve heard from the pandemic, the new norm, and applied it to your own diagnosis. An new way of life. And you wanted to see it as an opportunity to reinvent yourself.
Well, the alternative is for me to keep living like I don’t have Parkinson’s. That’s not sustainable. When the pandemic occurred.
I know it’s been a horrible thing, but I wanted to take advantage of it where I could. It is caused so many people’s lives to change and how we do things and how we perform tasks and the expectation of how we get together and socialize. This allowed me to make some modifications.
Reinvent myself. The slogan is the new norm. My new norm included Parkinson’s, so while everyone is trying to understand and figure out what their new norm is going to be, this allows me to define the new norm with Parkinson’s and we have to adapt because our condition is constantly changing.
And in the spirit of moving forward, you had a special guest an on that episode. The two you talked about putting on your boxing gloves, so to speak, and taking the fight to Parkinson’s. But then we got really serious an episode that you and I discussed a lot about and that was Parkinson’s and Faith.
Yeah, we really delved into the feeling of, well, God, where did you go?
I’ve always had my faith to guide and point my direction. All of a sudden everything’s ripped up. An included with this is that redefinition of faith of Lord. Are you done with me yet? Is this the finish line for me? I know the answer is a no. It’s forcing me to take.
God, out of the boxes that help me understand him and allow him to be so much bigger than I ever believe, and does it make me angry? It sure does, but that’s OK, he’s got big arms and we can pound on his chest and yelan get frustrated and he’s not going anywhere. That is good news.
A recent episode that seemed to gather a lot of momentum amongst your audience is the episode where you describe the desperate struggle of still being a strong man in the midst of Parkinson’s.
Parkinson’s destroys that male image that strong physical image that people see.
And then you’re left with trimmers not being able to walk right, and your body is not being strong. It’s progressively getting worse, so I’m redefining what strength is for man, that it may not be visible for everyone to see. However, getting up in the morning and continuing through the day.
And saying that, I’m not going to become a victim to this. That’s strength being locked in with the pandemic and having Parkinson’s on top of that, it’s hard to realize that life does not revolve around me and my strength that other people’s lives are still being affected. Good.
Bad and you can make a difference in those people’s lives.
And of course, our most recent episode prior to this one, where you discuss getting together with friends that you’ve known for several decades and how Parkinson’s plays a part in that particular weekend.
Well, it’s an annual guys trip.
To get away for the weekend, well, I discovered the goals that these men are striving for, that I had many of the same goals, but that is changed. I have to go in a different direction and they’re moving on with their lives doesn’t mean that the friendships have to be thrown away. Can’t keep up with them like I used to.
So that’s a look back into some of the topics we’ve discussed on this podcast season. Is there anything that you want to bring out that’s currently going on in your present?
I like to hear from others that have Parkinson’s.
What medications that they’re taken and I like to share what I’m taking as well, because what may work for someone may really benefit me once I learn what they’re taking, then I can research it and find out more about it. So when I go to see the neurologist I can make educated decisions. I’d like to share this with our listeners.
I take carbidopa levodopa three times a day. A tight neupro Patch this a Patch that you put on your body once a day and you can think of it as a nicotine Patch. However, with this Patch is a continual release of dopamine agonists that work.
Alongside of the carbidopa levodopa, I was taken Propranolol to help with the tremor in my right hand. However, I started eating Activia yogurt and have come to realize that that actually takes care of what the Propranolol was doing so I can mark Propranolol off my list great.
And finally, I’d take a combination of Klonopin and Trazodone at night that’s really worked out for me. Medication is always changing, but this is as of this time one I’m taking.
On now you want to bring value to the Parkinson’s community, and there’s a program that you’re really excited about. Can you tell us more?
Of really notice the information that is not known about Parkinson’s that we’re taking medication that was discovered in the 60s, and there’s really been nothing new. Well, the goal of PD Avengers is to raise awareness of the need to take action. Our voices need to be heard and let me read.
Something on their site, despite the unprecedented advances made in the areas of technology and medison Parkinson’s disease, remains a source of disability and poor quality of life. For the millions of people with PD around the world with each passing day, we and those that we love face a future of uncertainty.
An increased burden of disease. We know that there are many stakeholders working hard to make Parkinson’s disability a thing of the past, but we are increasingly impatient for progress to be made, so you can go to pdavengers.com and there you can sign a pledge.
And choose to help reach more of the Parkinson’s community by spreading the word by talking with those around you, social media, and by endorsing the efforts and joining in on the action plan for the campaigns. Of course, I have signed up.
You got a suit.
Thanks Cap, a question that might be on some listeners mind is when can we expect Season 2?
You know, I really don’t have a start date yet. My goal and continuing to do this podcast is to offer something that is unique in the Parkinson’s community. Well, I think the direction I’m going for Season 2.
To focus more on the emotional experience, the difficulty that is not visible or seen with Parkinson’s. There are so many stories to tell and so many things that need to be discussed ’cause I don’t know what this looks like and some of that Brian is going to depend on your availability Brian’s contract.
Is demanding yes and rigorous. We’re still in negotiations and trying to do a increase my speaking lines.
More lines in the show.
Unless there’s there’s a few things you can do to help support our show, we invite you to leave a rating on Apple Podcast to share this show with someone who could find some value and to get in touch with us and let us know your feedback and your comments.
After 15 episodes, we are officially concluding season one right now. Thank you so much for inviting me to be part of your journey. As we discussed a variety of topics and during the offseason we invite our listeners to check out on some of those episodes that they may have missed.
Brian, thank you so much for joining me as well. An willing to be a part of Parkinson’s and.
Me as I said I’m just re atoning for older brother sins.
Will renegotiate abstract later.
Look forward to seeing you on Season 2. Take care of y’all.
We would love to hear from you if you would like to leave a voice message then call is 7068731656 or you can email us at firstname.lastname@example.org until next time. Keep moving forward.