Picking Your Poison
00:00:00 Speaker 4
Oh, oh L.
00:00:04 Speaker 4
Hi and welcome to Parkinson’s and me.
This is Season 2 episode one, picking your poison.
Hi, my name is Daniel.
I’m the host of this podcast and I’m the one that has Parkinson’s disease.
October 2019 I was diagnosed with young onset Parkinson’s and this podcast is dedicated to the journey that I’m taking. Hopefully this is an inspiration to others not to become a victim of this disease. To look at square in the face and not run from it.
00:00:45 Speaker 2
To use the strength that you get from that actually redefining and improving your life.
Normally I’m joined by my brother Brian.
Our brother does not have Parkinson’s and he serves as the other voice of the podcast.
He has the insight and the questions that someone that doesn’t have the disease can ask and can come from that point of view. Unfortunately, Brian has covid and it is knocked him off his feet. My brother’s been struggling as of late. He lost his dog as much like his child.
And now he’s experiencing kovid. So my brother’s been having a really tough time, so my prayers, my thoughts are going out to you. Brian, hoping that you feel better.
Now for this inaugural episode, which I’m going to be doing solo, but it is certainly not by design, nor what I expect.
Going further and for the podcast at this time in my journey, I don’t have access to specialists and scientists who can speak about the cutting edge of research or therapies of how to improve your movement, your speech.
What I can provide?
And it’s a voice to be an advocate.
I’ve got a couple of things will be covering going to be discussing.
I feel like when I take my medication I am picking my poison and medication is supposed to make us feel better, right?
It does, but there’s a big asterisk of also including what I may include in future episodes.
I’ll call it Daniel’s wanderings. I wake up 4:45 in the morning just about every day except for Sunday and I go walking. Try to get about 5 miles in. That leaves me a lot of time to think and ponder and to get ready for.
Today, but it also has left me a chance to express some of the conclusions and things that I’ve kind of noticed.
But before we get started, I was on the phone the other day with a fellow persons with Parkinson’s.
It was a recommendation, actually from our financial advisor.
He said he had a friend with Parkinson’s.
And if I would be willing to receive a call from him, so we did, and we had a really good conversation, you always tend to compare.
Stories and in your life that day for him he told me that he was at the baseball fields, coaching his son’s team an he was out from 8:00 AM in the morning till 4:00 o’clock in the afternoon. And this floored me. I was like how do you have that much energy?
He’s a year younger than I am.
He’s like no well I’m I’m tired at the end of practice.
That’s a long pro.
Practice, but I don’t have a problem with fatigue.
I wanted to say are we talking about the same disease for him?
His struggle is more with his tremor along the right side of his body.
I’m going to be honest with you, that’s really not fair.
And I told this to my Parkinson’s support group.
An when I told them about him being able to go all day, their mouths sat wide open and said how it is a struggle to get through just a few hours of focused work or prod.
Jack, how does he have the energy?
So how do I put a positive spin on that?
The best I came up with is there are those that are currently at my stage of Parkinson’s that are worse off than I am much worse off.
And there’s this guy that is sitting.
Much better than I am, so instead.
Trying to compare and moaning and complaining that I don’t have this and I don’t have that you gotta decide, alright, this is what I’ve been given and move forward with it.
Maybe I just wanted to get that off my chest.
Maybe I’m just wanting to share that, but maybe you’ve experienced that as well.
For me it was a reminder to make sure that I didn’t close down on this guy.
And say all right?
Well, we don’t have anything else to talk about.
He’s a fellow persons with Parkinson’s and you never know where he’s going to be at months from now or years from now.
Alright, now we’re moving on to picking your poison.
What do I mean by this?
For me to illustrate, we need to understand some terminology.
OK, so there are two movement problems associated with Parkinson’s disease.
At least two, but these are two big ones.
There is bradken, Izia and Discon Izium bradykinesia.
Is the main symptom that goes along with the diagnosis of Parkinson’s disease.
So a person must have Brad Kinesia and includes some type of tremor or rigidity and bradykinesia is slower.
Movement is a reduction of automatic movements.
An example for me is I move slower.
Then I used to even three years ago, two years ago.
When I’m walking my right arm really doesn’t swing like it normally would.
Start the up and down, back and forth movement.
It’s pretty stiff.
Slowness in walking, falling.
These are things that are associated with Bradken Izium now.
Disk inizia involves people having uncontrolled erratic riding movements.
That’s what people think of often when they think about Parkinson’s disease.
Well, really complicates things is that dyskinesia is a complication of some Parkinson’s medic.
Asian and none.
An actual symptom of the disease itself is known to occur after someone takes carbidopa levodopa for an extended amount of time, and it really targets those who have been diagnosed early, such as myself.
Some recent studies suggest that dyskinesia is actuated.
00:06:53 Speaker 4
But the fluctuation level.
Of dopamine is the rising and falling throughout the day, so I think of a diabetic when their insulin gets low.
Need to make sure to get the correct amount of insulin in.
Is that fluctuation throughout the day?
That’s the same thing with those with Parkinson’s and the dopamine levels.
So let me have so many.
Explain that much.
Better than I can.
This is a clip from the Michael J Fox podcast.
00:07:22 Speaker 2
Doctor Christopher Bishop is a leading dyskinesia researcher based at the State University of New York in Bingham.
00:07:29 Speaker 2
He says, though it’s not the only factor, the likelihood of someone with Parkinson’s experiencing dyskinesia increases.
00:07:36 Speaker 2
The longer someone takes dopamine replacement drugs.
00:07:39 Speaker 3
Within about 5.
00:07:40 Speaker 3
Years, maybe 40 to 50% will experience dyskinesia and by year 10 that increases to 80 or 90%.
00:07:51 Speaker 3
But a lot of it still has to do with the progression of their disease, the age at which they were diagnosed, as well as to an extent the dose of L DOPA they’re taking.
00:08:01 Speaker 2
People with young onset Parkinson’s are particularly vulnerable to dyskinesia. That’s in part because they wind up taking L DOPA drugs for longer periods of time. But Bishop says it’s also because a younger person’s brain is more plastic.
00:08:15 Speaker 2
In general, neuroplasticity is a good thing, but
00:08:19 Speaker 3
There are two sides to neuroplasticity in the brain.
00:08:22 Speaker 3
I mean our brain has this amazing capacity to compensate for insult and injury.
00:08:28 Speaker 3
But there’s a tipping point, and with dyskinesia especially, we believe that some of that positive neuroplasticity shifts over too.
00:08:39 Speaker 3
Aberrant neural plasticity, so that when we begin to supply the brain with exogenous compounds, dopamine agonists and especially L DOPA, then the response.
00:08:51 Speaker 3
Shift from improving poor movements to producing hyperkinetic movements like dyskinesia.
00:08:58 Speaker 2
That hyperactivity happens because someone with Parkinson’s not only has fewer dopamine neurons overtime, the neurons they have don’t function as well, including how well those neurons process dopamine replacement drugs.
So when I.
So when I’m taking carbidopa levodopa.
I can move much more normally, like I used to.
I need to have it, but at the same time every time I take it.
I’m like how many more of these can I take before developing dyskinesia, so I’m taking this medication prescribed by my doctor in order to help me with my movement.
Caused by Parkinson’s, however.
It’s very likely that this very same medication that I’m taking is going to result in me having this other movement disorder, so if I could somehow perfect it, I’m not going to be able to, but if I could, to where I could get just enough of the dose and timing to control my symptoms.
However, not to have too much to wear, it will cause me to have dyskinesia.
Maybe earlier than if I would have taken more of it. However, I like the perspective of someone in our young onset Parkinson’s group who already has developed dyskinesias. He said I’d rather be as close to 100% every step along the way. Then if I’m 60 to 70% trying to hold on to a life that I’m not maximizing.
Well, hello and good morning to you. It’s about 5:15 in the morning.
And I’m out for a very cold walk.
Well, it’s cold for me ’cause I live in the South and I grew up in the South, said temperatures that are in the 20s.
But I did want to get on.
I just a couple of things I’ve noticed while I’m walking, specially while everyone in the neighborhood still sounds like they’re asleep, their roads aren’t busy.
It’s kind of nice, but I was working the other day and.
I’ve been noticing over the past several months.
That my voice is certainly I don’t know, getting lower much more of a fatigue voice to where I was covering a meeting and FM that I was speaking in a very tired voice.
And there was this little gravel to my voice.
Not quite a growl, but certainly gravelly, and it really made me sound very tired.
Weird because I am, but I really need to be aware of reaching that.
That tone not only at work but also with those around me.
I want to make sure that I keep an expression at voice as much as possible that will hopefully keep me from the gravelly tone and.
Sound like I’m about to fall over, however decrease in vocal tone is something that I can expect with Parkinson’s.
Secondly, at this new job for several months now I’m a contractor, so this big company contracts to this come.
Bernie, which gets me to come in do this work, hopefully for a long amount of time only.
I think that that’s very common place because it means that we are more expendable.
A couple of my close confidants, said McDaniel, hey, have.
You have you told.
The people at work you seem really tired, and I bet you that they will definitely understand you’ve got the American Disabilities Act to protect you and unform them.
No, I don’t.
I don’t have the American Disabilities Act to protect me because that is primarily to protect.
If you are already employed, not a contractor.
So my fear is sure it would be great to tell those around me.
Hey yeah, things may take me a little bit longer.
Because have Parkinson’s.
Hey, when I disappear from 15 to 20 minutes during the day, that’s me taking this required nap.
And yeah, I think that they would understand.
But when my contract comes up for renewal that they won’t understand when they can get someone else in the position that doesn’t have such a questionable future.
Maybe I’m overthinking it.
I do that.
That is my ammo, but my answer was no.
00:13:47 Speaker 4
Now, why am I going to tell them?
Because I’m still decently young an I have a lot more years to provide for my family, so I have no wish to have my contract not renewed because of this disease.
Also, if I can keep doing.
A great job.
I don’t want to be penalized for it, so those are my wanderings, so I’m going to throw it back to that crazy man in the studio behind the microphone.
I’d like to share with you an analogy that I heard that really helped me to rhylee how fatigue affects my daily life.
It’s very hard for those who don’t have Parkinson’s to understand the type of fatigue instead of gosh, you know, Daniels tired all the time and that’s what he says.
He’s just tired all the time.
So is the spoon analogy.
You can try this as well.
Hopefully this is going to be beneficial.
How I use this in communicating with my wife was I put down five different spoons and the instructions were name 5.
Things that you have to get done today and the first thing was driving to work took.
Why is Spoon driving back from work in Atlanta traffic?
Took away another spoon.
She was like I can I put work into a spoon.
I was like no it needs to be more specific than that.
So she started listing out the things that she needed to do specifically for work.
00:15:21 Speaker 2
Now soon all this parents were gone.
So I proposed to her that what if you only had these five spins for the day?
Having the limitation of these five spoons is what is like waking up in Parkinson’s every day.
In fact, the best case scenario is you have these five spoons.
But what if I was to take away one and be left with?
Four, that’s the limit of what I need to get done for the day.
I said maybe I’m having a really tough day and an these symptoms are really dragging on me or causing me to drag.
Took away another spoon.
I said I have three spoons left and this started a really good conversation of her beginning to understand how I plan out my day.
And how limiting it?
Can be without having limitless energy. In fact, choosing your spoons and then the spoons that you do. Choose you hope that one isn’t removed. So now when we communicate she’s like how many spoons do you have left for the day? And I can say, well, it’s a really good day and maybe 3/4 of the way through the day.
I’ve got 3/3 spoons left out of five, so I’m doing good. Or maybe I can say I’ve got zero spoons laugh. Maybe it’s midday an I have zero spoons left that really help communicate fatigue to my wife, so maybe that will help you as well since we’re trying to bridge.
The communication gap between those of us that have Parkinson’s and those that do not.
Well, this wraps up Season 2 episode one.
Thank you so much for joining me.
I love to hear from you and I’m going to put the contact information if you want to contact me, you can gonna leave a number to where you can leave me a message or email me Season 2 Episode 2.
Is going to have Brian back here I believe.
Keep that certainly in putting my hope in that that he’s going to be well as we discuss more about Parkinson’s and talk to you in the next episode. Thank you for listening. We would love to hear from you if you would like to leave a voice message, then call is 70687316.
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Until next time, keep moving forward.