“Who I Am Becoming”
Hi, welcome to Parkinson’s and Me. In this episode “Who I Am Becoming.”
Hi, my name is Daniel, and I was diagnosed with young onset Parkinson’s disease about two years ago. Essentially what that means is I have Parkinson’s disease and I’m younger than 50 now. This podcast is a way that I can share with others what life with Parkinson’s is like.
To help answer questions for those newly diagnosed and for those who don’t have Parkinson’s but want to learn more.
Welcome to 2021. Yes, it is the start of a new year and I know many of us are very glad to see 2020 head off into the sunset.
It’s been awhile since I’ve been behind this microphone. This is not going to be the beginning of Season 2. This is more of a bonus episode of Swords.
Brian is not with me, so I cannot continue as the start of a new season. However, I did want to get an episode out to kind of relate what’s been going on with me to keep those who listen informed. So in this episode I’m going to talk about who I’m becoming with Parkinson’s.
But before that. Hope you had a wonderful holiday this season in my life, I watched a lot of TV with my son. He’s been on a Smallville binge.
For those of you who are not familiar with Smallville says his showed that really goes deep into discovering who Clark Kent is before he turned into Superman, and by watching this, it certainly is a reminder of my tendency to want to be that Superman persona.
But I’m not in penetrable a more like a Superman that’s next to Kryptonite, and there are two things I’d really like to share with you. One of them is Michael J. Fox, his newest book has come out. There’s no time like the future. I’d like to tell you my takeaways from it and what I thought about it. And it’s interesting because.
When I was initially diagnosed with Parkinson’s, the first person I thought of was Michael J. Fox. Secondly is I have found some tweaks in medication that have really helped me that I’ve seen an improvement from and so those two things I’d love to share with you.
Later on, in the episode.
So, turning to the main segment of this episode, I really have been digging into the idea of who I am becoming.
A lot of times I don’t like the person that I’m becoming. I’m not like in these parts of me that include Parkinson’s. Now there are things that obviously I can change, and I have control over, but Parkinson’s does control me in some ways or control at least what I can do.
And I feel like I’m losing some major battles. Let me give me an example. Had a very disturbing experience some Christmas Eve.
I had one on Christmas Day as well, but with Christmas Eve I was working that morning to get some work done and I was trying to rush through that and then I needed to get ready to drive up to my wife’s family for Christmas and it was during that transition from when I stopped working cause I work from home and began to get.
Ready and felt that urgency that we really needed to go. Anxiety enveloped me. It was unlike anything that I’ve ever happened before because I’ve had panic attacks.
But this wasn’t a panic attack. This was a full out assault on all my senses, and I was so overwhelmed and shaking uncontrollably. I was trying to switch gears, had my foot on the pedal working the clutch, but the gears just were not switching and so I had no choice but to lay down and try to get some control of myself.
I had to tell myself to breathe and try to relax.
And it took me 30 minutes to even find some semblance of control. And by that time, we were already going to be late, which was very, very frustrating and scary. It is a very scary experience, and I didn’t recover for the day. I put on a good smile and a face, and I really try my best to enjoy that time with family.
But I really couldn’t get into it as much as I had wanted to.
And now for Christmas Day I don’t know, but she but I am somebody who loves watching movies. I love the experience. I love to focus on it. I love new content and this year with Kovid’s meant that there’s not been new content, or I have not had the theater experience. So, for me, I was excited about the new Wonder Woman movie that came out.
That I could watch it in our living room, so I had the big TV set up. The sound setup I was ready to go on, my son being 12 and someone different than me does not watch the movies in the same manner than I do, so he was moving around, talking, throwing the ball. He’s a very active.
And as the movie went on and the distractions started racking up, I was getting more and more angry because I wanted to focus on the movie and eventually, I snapped at him. If you know me, you know I don’t do that. I make sure that I take great care that I I don’t snap at my son.
It’s not his fault, it’s something going on with me. Did he help the situation? Of course not, but he didn’t deserve that anger. I have to think these two days were influenced, whether by Parkinson’s itself or the medication that I’m taking, or probably both.
As time is passing and I’m finding that Parkinson’s is defining more of who I am that I like it too. I’m not liking these parts of me, and as someone who likes control over his life, this intrusion is I don’t welcome it, but it’s there all the same. So I’m back asking myself.
How much can I control? What can I control? And there’s simply I’ve got to acknowledge that there is limited understanding about Parkinson’s and how it affects moods. So what can I do about it?
Dealing with all these decisions reminds me of a friend of mine and how he handles staff meetings. He was my coworker, and he was in a managerial role and in team meetings there were times to where people complained constantly, and they would get on their merry go round of complaining about this or this group or this team.
Not doing their part and asking unending questions. He doesn’t address the complaining. He doesn’t jump on who’s right and who’s wrong? Did they always come back with this question? How can the issue be resolved?
Taking away all the arguments, all the dissent that was occurring, all the complaining. His goal was to find a solution. So how my friend handles staff meetings, I’m going to apply to my mindset, try to filter everything out, remove the merry, go round, thought processes and focus on.
What can I do to solve the problem? I can’t ultimately solve it, but one step at a time of the things that I can do something about.
As we’re moving on to what I guess we’ll call the sharing segment of this episode a red. Michael J. Fox is book and I really enjoyed it and learned a lot. I would go in more detail about it, but this is going to be a short episode, but he wrote something near the end of the book that spoken challenged me. The truth is, I don’t want to live like this.
But I have found a way to accept the fact that I do for every perilous trip across the room, when my meds are off, and my steps are halting an erratic. There are also times when it all slips away.
In those moments like this night out with my family, I feel joy and contentment. In these moments I have everything I need. If you’re thinking about breeding Michael J Fox, his latest book, I would not necessarily recommend it. For those of you who have been diagnosed recently with Parkinson’s.
He just gets very real about his situation and what’s happening with him, and he is in the later stages of Parkinson’s and I lament it. It’s scary, but I think it’s a fantastic book that once again he opens up and it’s very.
Open and honest with himself and with his readers while at the same time always coming back to that question. Who am I becoming? I don’t like that loss of control and I hate that I cannot prepare for it. Well, I’m going to do the very best that I can to define who I’m becoming as.
Someone that is doing his best with Parkinson’s and just doesn’t become a victim.
Alright, before I head out on this episode, I found a couple of things that were pretty cool. My wife got me a weighted blanket for Christmas. Throughout my life, I’ve noticed that I love heavy blankets, especially around my feet, so having this pressure on my body.
My life, and just attributing it to, well, I guess I’m like something heavy on my feet, but for some reason that puts me to sleep faster. It didn’t occur to me to even investigate.
A a weighted blanket, the one that she gave me is a 13-pound blanket. There are different weights that you can get, but for me just being covered with it allows me to get so much better sleep. Also, talking with others in the Parkinson’s Support Group, they discussed how.
A weighted blanket helps them not to toss and turn as much.
They felt much more comfortable in and now there were those that said, look, I have a tough enough time getting out of bed with this disease that I don’t want. This added weight to it, so obviously if that is the current state that you’re in, it’s not going to work for you. But it was a neat find now.
I talked about this tweak in my medication at the beginning of the episode.
Soon after I was diagnosed and began taking covered up 11 DOPA, the extended release and my neurologist thought behind that was to make sure that that lasted without me having to take so many pills and an keep out with things. The movement disorder specialist told me to go ahead and stop taking the extended for lease.
His thought was that the power behind the hit that you get may not be significant enough in the extended release. So, he raised the amount that I’m taking.
An as the regular release. Well, it took about five to six weeks. I noticed a significant difference. My hand was moving better. My slowness was improved. I was able to move my arm better, even to the point where it allowed me to begin typing.
Again, this was huge in such an encouragement because I had heard so much about those that took covered up a leva DOPA once they found out that they had Parkinson’s. Well, they notice such a significant increase in improvement. Well, I didn’t experience any of that.
This left me wondering, is it really adding a lot of benefit? Well, I can say now. Yes it does.
So Brian and I will be back again, but I did want to take this time out to wish you a very happy New Year and to let you know that we’re still here. And I know it’s a typical time for everyone. We feel isolated that we feel alone overwhelmed.
I firmly believe that the sun will shine again. I want to make sure that I’m in the best physically, emotionally to enjoy that sun when it rises and shows itself again until next time when I’ll be joined with my brother Brian. Take care.
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