Tribulation Road

Daniel
Greetings and welcome to Parkinson’s and me. Hi, my name is Daniel. Welcome to the first inaugural episode of this podcast.
Daniel
This podcast is what I’m laying down on the table and saying that I don’t know exactly what I’m going to do with it. As with most things in my life, I’m very organized and plan and have an idea of something. The project and putting together. But with this podcast I know I needed to get it out. It’s a step forward.
Daniel
And I’m laying it down whatever it comes out to be. Hopefully, you’ll be a big part of that.
Daniel
Parkinson’s and Me is geared towards more of the individual. I’m just a normal person. Someone that you would bump into on the side of the street, maybe someone you’re working with side by side and you don’t know that they have Parkinson’s. Maybe, someone, you’re watching, maybe someone who’s presenting something and they are hiding their symptoms,
Daniel
Well, I’m kind that person and I want to share my story and have this podcast serve as a diary of sorts for my son.
Daniel
So the name of this episode is Tribulation Trail or Tribulation Road? Not sure of quite the title that I want yet.
Daniel
To give you my stories summed up.
Daniel
Eight months ago I was diagnosed with Parkinson’s. I’m 43 years old and I have an amazing wife and a very active then 10-year-old son. Now he’s 11.
Daniel
And much like many of you that may be listening. It was quite the process to get to the diagnosis. My work requires heavy use of my right hand and my right arm. I do a lot of typing an I noticed that.
Daniel
My fingers, specifically my pinky, finger, and ring finger were numb, were not responding like they normally would, and I’m a fast typer to keep this short. I went to several neurologists had also went to orthopedic surgeons, two of them.
Daniel
Who did carpal tunnel surgery and cubital tunnel surgery? No effect. I went to a neurologist who basically looked at me after several visits and said I can tell you what it’s not.
Daniel
But I can’t tell you what’s wrong with you?
Daniel
Freakishly enough, he’s a Parkinson’s specialist.
Daniel
And he guaranteed that I did not have Parkinson’s after that useless visit. Having to wait several months. I finally got in with a neurologist that gave me the diagnosis SUV believe you have corticobasal degeneration.
Daniel
I didn’t know what that was. I was like, Oh, OK, anything I need to know about and she just had this sad look on her face and was like, well, let’s get a DAT scan main to make sure that it’s not a central trimmer.
Daniel
Well, the scans can back, and indeed I did have parkinsonian symptoms.
Daniel
And for those of you who aren’t aware of what a DAT scan is, I certainly was not someone who knew.
Daniel
It is very complicated and expensive brain imagery that is looking for your dopamine receptors. How much dopamine is left in your brain or is being produced?
Daniel
If you have all your dopamine and this is very simplified that’s a clear sign that you have essential tremor.
Daniel
If you had a reduced amount of dopamine in your brain, that means being produced, then you have Parkinsonian. There’s a whole category of not fun diseases, uh, that are attached to Parkinsonian.
Daniel
But Parkinson’s disease is one of those that can’t be diagnosed.
Daniel
So to sum up, my limited knowledge of a DAT scan and that is DAT.
Daniel
That allows the neurologist to be able to distinguish whether the diagnosis is parkinsonian or if it’s essential tremor.
Daniel
I was re-diagnosed away from Corticobasal degeneration to Parkinson’s disease.
Daniel
So it’s tough to say this without deep resentment. The original diagnosis of Corticobasal degeneration, which would result in a horrible death that was waiting for me after four to six years that left my wife and I absolutely destroyed thinking we had only a small amount of time.
Daniel
And wow what a horrible way to go. That was no longer the case. It was Parkinson’s disease. That was the relief, obviously.
Daniel
Similar to many of you that led me on a journey to discover.
Daniel
This terrible disease and at 43 years old I was obviously in denial for a while because I’m too young for this disease.
Daniel
Well, the last eight months have been difficult, to say the least, not to mention hopefully this is long past by the time other listeners may listen to this first show, but we’ve had the Covin 19 and the pandemic we’ve been locked inside in the US, for several months.
Daniel
This made it all the more difficult to work through this. However, I was faced with it because I couldn’t get away from it.
Daniel
Now on to my goals for this podcast. This show as stated is a chronicle to my son. He’s 11. We’ve told him and he’s been having difficulties with it. My wife has been destroyed by it. She is still amazing. She never stopped being amazing.
Daniel
And I had a good friend, my best friend tell me, he has several autoimmune diseases he gave me some really valuable information, told me on the phone and off to the side as well. On a guys trip that we go on annually. He just looked at me and he was like bro. I just really encourage you to grieve through this.
Daniel
Grief through it, feel it, let it slam into you. Because only by grieving can you come out on the other side stronger if you kind of cheat the system and try to get around it?
Daniel
Then you’re going to be dealing with this with the reality that this is not going away.
Daniel
So I want you to grieve it, since he has been the source of many phone calls, resulting in me grieving, complaining, freaking out with him. What an amazing friend at the exact time that I needed that advice. Also coming from one who has several autoimmune diseases that he has learned to deal with to not live as others do when he was much younger.
Daniel
But I think those words are so valuable for those of us that not only are diagnosed with Parkinson’s and maybe haven’t really come to the end result of We’re not getting away from this, but also with anything in life.
Daniel
And so I am still grieving. I am still struggling with the next steps. What are the next steps when I find the next steps when I believe I do?
Daniel
I get overwhelmed easily.
Daniel
And that’s not to mention being overwhelmed by the actual progression of the disease.
Daniel
So back to the goals for the podcast. Sorry about that.
Daniel
I want it to be for my son for myself so he can go back and listen, but I really hope that this gives voice to those in the community that maybe feel that they don’t have a voice.
Daniel
I believe openly sharing.
Daniel
Exchanging information even down to medications to doctors that aren’t giving you the correct information. I really want to keep this podcast upbeat.
Daniel
Upbeat because I know that when I look at things in a positive manner that I really still have a life. ahead.
Daniel
And is up to me to choose which way I’m going to live that life now. Don’t get me wrong, I have terrible days terrible days.
Daniel
To where it seems that all hope is lost.
Daniel
But I hope that this eventually winds up with you listening and you providing information back.
Daniel
The podcast is so raw that I haven’t set up an email address for you to contact me. Again. This is kind of the first step stepping out into this unknown reality of Parkinson’s and podcasting.
Daniel
I’m going to share many things along my journey.
Daniel
And I hope by doing that and sharing that that it helps you maybe not have the questions that you’re you’re searching for. Maybe I can help cross off that on your list. But also I would love your help as well.
Daniel
So this is my first step show, Parkinson’s and Me to where this is how Daniel is going to deal with Parkinson’s, but I know I’m not alone so I will be recording again soon. I wanted to share with you and share with myself and later self this journey of Parkinson’s. Thank you so much.

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