Hi, this is Daniel Welcome to Parkinson’s in me a man with Parkinson’s.
Well hello everyone. Thank you so much for taking the time to listen. My name is Daniel. I have been diagnosed with young onset Parkinson’s disease and I needed a creative way to process what this means and have this podcast serve as a Chronicle of my experiences.
And also a way for me to share with the Parkinson’s community. These are episodes that build one on top of the other, with the earliest episodes dealing with when I was first diagnosed and moving through the year of what has taken place. How have I grown? What are the steps that I’ve taken for this episode?
Brian and I are going to discuss what it’s like for Parkinson’s to take what it is to be a strong man. I’m afraid it’s going to come across as very chauvinistic, very male, dominant way of singing things. You could say old-fashioned I grew up in the US in the South and this is clearly influenced the way I perceive.
When a man is supposed to be like, my goal is not to disparage or or look down on females at all. My goal for this episode is to relate and speak to what it is to be a man to the males out there and for our female audience to give you an idea of what’s going on inside.
That man that you know I do wanna welcome Brian to the podcast. He’s my Big Brother Brian. Welcome to the show.
Thank you, Daniel and just a reminder to our audience. I represent those of you who don’t have Parkinson’s disease, but you know someone who does and you just are wanting to listen to this podcast to better understand what your loved one is going through.
And offer a little broadly support along the way. And Speaking of hanging out with my brother and I actually got to be with you and your family live this last weekend and that’s something we don’t normally get to do. So I gotta say man, you were looking pretty good. I can tell you been working on those cardio exercises.
I appreciate it, thank you.
Still doing the everyday walk as much as I can. Just movement is such a big factor in dealing with Parkinson’s an I believe it’s going to be bigger. Deal down the road so I’m trying to establish the good patterns now.
Before we get into talking about being a man with Parkinson’s, let’s get into some updates that are going on in your world, Daniel, and to start us off.
This month marks 10 years that we lost our mom.
Have you been a good little boy? OK, say yes, ma’am and thank you for everything. It’s now Santa Claus is watching you then.
What would you what?
Do you want for Christmas then yeah.
So things what?
00:03:12 Kid Daniel
I knew lifesaver.
And some stylish people, all the stars people.
A 10 years gone yeah, and that’s really hard to believe and just kind of want your. What are your thoughts about that as we mark the 10 year anniversary of her passing?
She’s dearly missed. She was such a powerful influence in our lives. Obviously a very positive one.
Absolutely. And she is one who had her own pains and hardships and her own battles in life. Like you said, just miss her. Sorry she hasn’t been here to take in the joys of your son and how he’s turned out and how we’ve turned out. I think she would be pretty pleased despite all the hardships we’ve done alright for ourselves.
Alright, and that’s a great way to get into our main topic.
Alright, before we talk about Parkinson’s attacking your identity as a man, let’s define.
What is your definition?
Well, I think it’s pieces that we stick on ourselves along the way. As we’re growing up from what was instilled in us as we were kids from our mom was to be a country gentleman. Yes, to make sure to always say yes, Sir. No Sir. Yes ma’am. No ma’am to opening the door.
Or a female? A bit of chivalry. We would say. I believe that the importance of being a financial provider for your family and for yourself. Your ability to defend and protect those that you love and those that are in need. I remember Brian when we were younger. I loved watching the Christopher Reeve Superman movies when I was a kid because I wanted to.
Be Superman, because Superman had the ability to save everyone. He never grew tired and he could fly, which is a really cool thing, but he was able to save so many people.
Would you care to step outside?
00:05:31 Lex Luthor
Superman thank God. I mean get him!
Come to me, son of Gerell. Kneel before Zod!
So now that we define what manhood means to you, how is Parkinson’s attacking your identity as a man?
Let me just give you a few examples. Recently I was able to get a truck bed lid.
on my truck. So this is a man’s thing to do to be able to assemble, to put together. And I couldn’t install it. My hands don’t have the coordination. It’s very painful. And when I opened the box with all the instructions and components, I just got completely overwhelmed.
It went from being a man’s thing to put in this truck bed. Cover on to where my wife had to put it together and assemble it. She’s very kind in doing that, but it doesn’t really help out the man’s man mentality.
Especially where you live in here in the South, where a man in his truck they go hand in hand.
With each other for sure.
Yeah, they do. I believe I mentioned in earlier episodes about my difficulty opening small things such as an envelope. I’m not able to open the mail.
Guess even more frustrating is when you think about that ability to defend and protect your own house if you’re so limited. Just doing that, defending your own house would be even more of a challenge.
Yeah, we had this.
Conversation not too long ago and I was telling you that my coordination and ability to defend our house, an intruder can come in and I would try to take him on. I would get my butt kicked and then you pointed out you’re like well. It’s a good thing you have a gun. I had to come back with my trimmer is getting so predominant.
Stress brings on these trimmers to where when I would go to grab a gun and take a shot and I couldn’t get a good shot off because my hand would be wigging out all over the place. When you can’t defend your own family, that’s not a man’s man.
Yeah, we certainly don’t look up to those guys in the movies and TV shows for sure.
You were talking about Superman rescuing the damsel in distress. Does the damsel in distress need saving at this moment?
Yeah, the reversal in roles is discouraging disheartening, and to know that it’s going to continue and get worse. My wife is going to have to do more she doesn’t need saving.
The progression of Parkinson’s means that I’m the one who’s going to cost the distress. I won’t be able to save her from it. I’ll be the causation of it.
But to be honest, you think she would even see it that way?
No, I don’t think she sees it that way at all, but we’re talking about being a man here, and how we look at it.
I think many listeners can relate with our desire to want to be that man.
Are you able to still drive all that much, or is that something she’s going to have to pick up as well?
If I see a friend or another man ask a lady to drive. I’m just going to be honest. If think what’s going on with that? Why are you letting that happen?
I think the same thing.
Driving is a way to serve Jana, so way to honor, and it’s the man’s position to be able to offer this service for sure if there’s any distance that’s involved, then I have to ask her to please drive because I can’t do it. My hands and my arms, at least right now, don’t have.
The ability to hold on enough. It’s so painful that ice of pain just crawls down my arms. So short distances I got it I can drive it’s another thing that has been taken from me being able to offer to her an I feel so emasculated.
Course, she’s probably doesn’t think any less of me. However, I’m in the passenger seat going. My son is seeing that my wife’s driving I have failed to be a man.
Well, let’s talk about working in the outdoors, something that is often stereotyped with a lot of Manly Men. How are you doing this as far as just yard work in general?
A childhood memory for us is our dad never cut the grass. It was always up to our mom until we got older. They would just lay back and not do anything not help in any way. A man is the one that cuts the grass and it’s not that I don’t think that Jana can’t cut the grass. She’s the one who does most of the planting and the.
The weed killing all the pretty things that are in our yard is because of her. I just need to cut the grass gives a sense of accomplishment to a man when he’s done well and put in a little sweat for his home and to go back a bit with a humor story. When my wife was pregnant with my son I had had a back injury.
I had slipped some discs and I was not able to cut the grass. The grass was getting long and my wife wanted the yard cut. I asked her and I told her that this is for me to do and take care of. So I’m on the couch and all of a sudden I hear the lawnmower crank up and looked outside.
There’s my wife with a big old bump in her tummy cutting the grass and this was a difficult lawn to cut. I was like Oh no, I knew all of our neighbors around us or looking at this lady that is nearly do. She comes inside after a few minutes and says Daniel, I’ve got wonderful news.
All of our neighbors are pitching in and are cutting our grass and doing the edging. I knew what the neighbors were thinking. I knew those look bad. Yep, from that time forward. We’ve had an agreement. She is never to cut the grass. That is my job. Credit to her. She has stuck by that but I know it’s been tough for an. I refused to give that out.
But my body pays a huge price for continuing to perform these yard duties including edging and bending over and lifting. It’s something that I can’t let go of, and I’m going to suffer the consequences because that’s what it means to be a man.
It seems like you get a lot of.
Value when others look at you.
To be strong or have the ability to be independent and take care of things.
Yeah, I remember this was goodness back when I was 16 years old that I felt needed feeling like a man. Every Halloween there was. This place was a field that was called Tribulation Trail and it was dedicated to the apocalypse. We would go there with our church.
Yet people jumping out with chainsaws and all this extravagant horror and death and all of a sudden feeling these girls grabbing my arms and my shoulder, and huddling close because they’re scared and they want to protect her and I was the brave defender I was hooked. I felt the power.
That comes from feeling needed. I think many listeners can relate. We were Specht physical strength. We respect independence. However, being diagnosed with Parkinson’s means that strength that independence is going to diminish with me. So being fairly young.
Makes it really tough Brian because I love being that source of strength for people. I’m hooked on it. I think we all are to a point and we all want to feel needed strength fades as we age. It stinks just 2 to 3 years ago, I had the ability to function to protect and be that source of strength.
The physical strength as it stands now that has been removed and suddenly very quickly, I’m left with. I don’t have this physical strength to offer. I find my identity in the strength that I can provide.
Obviously, Parkinson’s is not going to just go away and things are going to get worse, so there’s not a whole lot you can do to change that, so I feel like you almost need to, and I’m sure you recognize this. You need to redefine what being a man means to you with Parkinson’s disease.
I’m having to redefine that strength. What is true strength?
To get up in the morning and to say I’m not going to let it beat me today. That is strength.
To suffer the progression that is Parkinson’s an not complain about it to everyone that is strength, but it’s the type of strength Brian that’s not going to be obvious for everyone is going to have to be different, and I’m going to have to really have more strength than I’ve ever imagined having.
This role is needing to be redefined. I don’t think I’m alone and having a difficult time transitioning to this definition of strength, but you’re exactly right, it’s gotta happen.
And with you saying that, I feel like you’re still way ahead and what you have to offer to both your son and to your wife and to others.
Alright, let’s get into our final segments and let’s discuss what has become the theme of this podcast and that is keep moving forward. And Daniel, I know we’ve talked about. There are some things that you want to share with our audience that are helping you.
With that mentality, and one of those is a book that you’re reading. Tell us more about it. It really rocked me when I read this. The author is writing about worry. He said it so well and it’s from the book. What is the Bible? I’ll read exactly what he wrote, said that worry is lethal to thriving because his failure to be.
Fully present worrying about something means you’re there, not here, stuck, ruminating on the future, not enjoying the present. Jesus teaches us to be fully present at this moment, not missing nothing right here right now. And it goes on to say when your interior life is a mess.
When you’re wracked with worry and guilt and anxiety, you’re desperate for distraction, something to take your thoughts off of the pain and chaos within you, which often expresses itself in judging and shaming and condemning others. People with a high need to control others are generally doing it.
As a way of dealing with the lack of control they are experiencing with themselves, that was a powerful message directed at me because something that I’ve noticed is my bitterness is become more pronounced. I look at someone in their life, even a friend or someone that I love that I begin to judge them.
And condemn them and go. They don’t understand or they don’t get it, or they haven’t really had any trouble in their lives. I’ve got real trouble that bitterness creeps into everything that I’m doing. I don’t want to be a failure to be fully present. I have a tendency to worry about things that are to come.
Or looking too far in the future and not enjoying the present. A reminder for me and maybe just some others to be fully present at this moment because that’s all we have.
That’s a good word. Whether you have Parkinson’s disease or not. Good stuff, man.
Brian, do you feel comfortable wrapping this up?
We definitely discussed a lot of information, a lot of things to reflect on and think about, and we welcome your opinion, your thoughts, and just a few moments. Daniel is going to give you our contact information.
Brian, thank you for taking the time. No, I say it each episode, but it doesn’t take away from my appreciation of.
Acknowledging that it’s a gift that you give me.
Glad to do it, brother and thank you to all the listeners who have listened to these episodes. We hope you have found some value in our discussions as well.
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Thanks for listening.