Parkinson’s and Me Episode 2.2: Picking Your Poison

Picking Your Poison

 00:00:00 Speaker 4 

Oh, oh L. 

00:00:04 Speaker 4 

2nd. 

00:00:10 Daniel 

Hi and welcome to Parkinson’s and me. 

00:00:14 Daniel 

This is Season 2 episode one, picking your poison. 

00:00:22 Daniel 

Hi, my name is Daniel. 

00:00:23 Daniel 

I’m the host of this podcast and I’m the one that has Parkinson’s disease. 

00:00:28 Daniel 

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 

00:00:48 Daniel 

To use the strength that you get from that actually redefining and improving your life. 

00:00:55 Daniel 

Normally I’m joined by my brother Brian. 

00:00:58 Daniel 

Our brother does not have Parkinson’s and he serves as the other voice of the podcast. 

00:01:04 Daniel 

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. 

00:01:25 Daniel 

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. 

00:01:34 Daniel 

Now for this inaugural episode, which I’m going to be doing solo, but it is certainly not by design, nor what I expect. 

00:01:43 Daniel 

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. 

00:01:57 Daniel 

What I can provide? 

00:01:58 Daniel 

And it’s a voice to be an advocate. 

00:02:00 Daniel 

I’ve got a couple of things will be covering going to be discussing. 

00:02:04 Daniel 

I feel like when I take my medication I am picking my poison and medication is supposed to make us feel better, right? 

00:02:11 Daniel 

It does, but there’s a big asterisk of also including what I may include in future episodes. 

00:02:19 Daniel 

And that’s. 

00:02:19 Daniel 

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. 

00:02:35 Daniel 

Today, but it also has left me a chance to express some of the conclusions and things that I’ve kind of noticed. 

00:02:43 Daniel 

But before we get started, I was on the phone the other day with a fellow persons with Parkinson’s. 

00:02:50 Daniel 

It was a recommendation, actually from our financial advisor. 

00:02:53 Daniel 

He said he had a friend with Parkinson’s. 

00:02:56 Daniel 

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. 

00:03:05 Daniel 

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? 

00:03:25 Daniel 

He’s a year younger than I am. 

00:03:27 Daniel 

He’s like no well I’m I’m tired at the end of practice. 

00:03:32 Daniel 

That’s a long pro. 

00:03:32 Daniel 

Practice, but I don’t have a problem with fatigue. 

00:03:36 Daniel 

I wanted to say are we talking about the same disease for him? 

00:03:41 Daniel 

His struggle is more with his tremor along the right side of his body. 

00:03:45 Daniel 

I’m going to be honest with you, that’s really not fair. 

00:03:50 Daniel 

And I told this to my Parkinson’s support group. 

00:03:53 Daniel 

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. 

00:04:08 Daniel 

Jack, how does he have the energy? 

00:04:11 Daniel 

So how do I put a positive spin on that? 

00:04:13 Daniel 

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. 

00:04:26 Daniel 

And there’s this guy that is sitting. 

00:04:28 Daniel 

Much better than I am, so instead. 

00:04:31 Daniel 

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. 

00:04:43 Daniel 

Maybe I just wanted to get that off my chest. 

00:04:45 Daniel 

Maybe I’m just wanting to share that, but maybe you’ve experienced that as well. 

00:04:50 Daniel 

For me it was a reminder to make sure that I didn’t close down on this guy. 

00:04:55 Daniel 

And say all right? 

00:04:56 Daniel 

Well, we don’t have anything else to talk about. 

00:04:58 Daniel 

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. 

00:05:14 Daniel 

Alright, now we’re moving on to picking your poison. 

00:05:17 Daniel 

What do I mean by this? 

00:05:19 Daniel 

For me to illustrate, we need to understand some terminology. 

00:05:23 Daniel 

OK, so there are two movement problems associated with Parkinson’s disease. 

00:05:28 Daniel 

At least two, but these are two big ones. 

00:05:31 Daniel 

There is bradken, Izia and Discon Izium bradykinesia. 

00:05:36 Daniel 

Is the main symptom that goes along with the diagnosis of Parkinson’s disease. 

00:05:41 Daniel 

So a person must have Brad Kinesia and includes some type of tremor or rigidity and bradykinesia is slower. 

00:05:51 Daniel 

Movement is a reduction of automatic movements. 

00:05:54 Daniel 

An example for me is I move slower. 

00:05:57 Daniel 

Then I used to even three years ago, two years ago. 

00:06:01 Daniel 

When I’m walking my right arm really doesn’t swing like it normally would. 

00:06:06 Daniel 

Start the up and down, back and forth movement. 

00:06:10 Daniel 

It’s pretty stiff. 

00:06:11 Daniel 

Slowness in walking, falling. 

00:06:14 Daniel 

These are things that are associated with Bradken Izium now. 

00:06:17 Daniel 

Disk inizia involves people having uncontrolled erratic riding movements. 

00:06:23 Daniel 

That’s what people think of often when they think about Parkinson’s disease. 

00:06:27 Daniel 

Well, really complicates things is that dyskinesia is a complication of some Parkinson’s medic. 

00:06:34 Daniel 

Asian and none. 

00:06:35 Daniel 

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. 

00:06:50 Daniel 

Some recent studies suggest that dyskinesia is actuated. 

00:06:53 Speaker 4 

I. 

00:06:54 Daniel 

But the fluctuation level. 

00:06:56 Daniel 

Of dopamine is the rising and falling throughout the day, so I think of a diabetic when their insulin gets low. 

00:07:04 Daniel 

Need to make sure to get the correct amount of insulin in. 

00:07:08 Daniel 

Is that fluctuation throughout the day? 

00:07:10 Daniel 

That’s the same thing with those with Parkinson’s and the dopamine levels. 

00:07:15 Daniel 

So let me have so many. 

00:07:17 Daniel 

Explain that much. 

00:07:18 Daniel 

Better than I can. 

00:07:19 Daniel 

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. 

00:09:12 Daniel 

So when I. 

00:09:12 Daniel 

So when I’m taking carbidopa levodopa. 

00:09:14 Daniel 

I can move much more normally, like I used to. 

00:09:19 Daniel 

I need to have it, but at the same time every time I take it. 

00:09:23 Daniel 

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. 

00:09:35 Daniel 

Caused by Parkinson’s, however. 

00:09:39 Daniel 

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. 

00:09:57 Daniel 

However, not to have too much to wear, it will cause me to have dyskinesia. 

00:10:02 Daniel 

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. 

00:10:30 Daniel 

Well, hello and good morning to you. It’s about 5:15 in the morning. 

00:10:36 Daniel 

And I’m out for a very cold walk. 

00:10:40 Daniel 

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. 

00:10:51 Daniel 

Is. 

00:10:52 Daniel 

That’s cold. 

00:10:55 Daniel 

But I did want to get on. 

00:10:57 Daniel 

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. 

00:11:08 Daniel 

It’s kind of nice, but I was working the other day and. 

00:11:12 Daniel 

I’ve been noticing over the past several months. 

00:11:15 Daniel 

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. 

00:11:32 Daniel 

And there was this little gravel to my voice. 

00:11:36 Daniel 

Not quite a growl, but certainly gravelly, and it really made me sound very tired. 

00:11:44 Daniel 

Weird because I am, but I really need to be aware of reaching that. 

00:11:49 Daniel 

That tone not only at work but also with those around me. 

00:11:54 Daniel 

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. 

00:12:04 Daniel 

Sound like I’m about to fall over, however decrease in vocal tone is something that I can expect with Parkinson’s. 

00:12:13 Daniel 

Secondly, at this new job for several months now I’m a contractor, so this big company contracts to this come. 

00:12:21 Daniel 

Bernie, which gets me to come in do this work, hopefully for a long amount of time only. 

00:12:29 Daniel 

I think that that’s very common place because it means that we are more expendable. 

00:12:36 Daniel 

A couple of my close confidants, said McDaniel, hey, have. 

00:12:40 Daniel 

You have you told. 

00:12:42 Daniel 

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. 

00:12:54 Daniel 

No, I don’t. 

00:12:55 Daniel 

I don’t have the American Disabilities Act to protect me because that is primarily to protect. 

00:13:01 Daniel 

If you are already employed, not a contractor. 

00:13:05 Daniel 

So my fear is sure it would be great to tell those around me. 

00:13:12 Daniel 

Hey yeah, things may take me a little bit longer. 

00:13:16 Daniel 

Because have Parkinson’s. 

00:13:18 Daniel 

Hey, when I disappear from 15 to 20 minutes during the day, that’s me taking this required nap. 

00:13:25 Daniel 

And yeah, I think that they would understand. 

00:13:28 Daniel 

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. 

00:13:39 Daniel 

Maybe I’m overthinking it. 

00:13:41 Daniel 

Overanalyzing it. 

00:13:42 Daniel 

I do that. 

00:13:44 Daniel 

That is my ammo, but my answer was no. 

00:13:47 Speaker 4 

Honey. 

00:13:48 Daniel 

Now, why am I going to tell them? 

00:13:50 Daniel 

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. 

00:14:06 Daniel 

Also, if I can keep doing. 

00:14:08 Daniel 

A great job. 

00:14:09 Daniel 

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. 

00:14:25 Daniel 

I’d like to share with you an analogy that I heard that really helped me to rhylee how fatigue affects my daily life. 

00:14:34 Daniel 

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. 

00:14:44 Daniel 

He’s just tired all the time. 

00:14:46 Daniel 

So is the spoon analogy. 

00:14:49 Daniel 

You can try this as well. 

00:14:50 Daniel 

Hopefully this is going to be beneficial. 

00:14:53 Daniel 

How I use this in communicating with my wife was I put down five different spoons and the instructions were name 5. 

00:15:02 Daniel 

Things that you have to get done today and the first thing was driving to work took. 

00:15:07 Daniel 

Why is Spoon driving back from work in Atlanta traffic? 

00:15:10 Daniel 

Took away another spoon. 

00:15:11 Daniel 

She was like I can I put work into a spoon. 

00:15:15 Daniel 

I was like no it needs to be more specific than that. 

00:15:18 Daniel 

So she started listing out the things that she needed to do specifically for work. 

00:15:21 Speaker 2 

Deuce 

00:15:23 Daniel 

Now soon all this parents were gone. 

00:15:25 Daniel 

So I proposed to her that what if you only had these five spins for the day? 

00:15:31 Daniel 

Having the limitation of these five spoons is what is like waking up in Parkinson’s every day. 

00:15:37 Daniel 

In fact, the best case scenario is you have these five spoons. 

00:15:42 Daniel 

But what if I was to take away one and be left with? 

00:15:45 Daniel 

Four, that’s the limit of what I need to get done for the day. 

00:15:49 Daniel 

I said maybe I’m having a really tough day and an these symptoms are really dragging on me or causing me to drag. 

00:15:57 Daniel 

Took away another spoon. 

00:15:58 Daniel 

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. 

00:16:07 Daniel 

And how limiting it? 

00:16:08 Daniel 

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. 

00:16:30 Daniel 

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. 

00:16:48 Daniel 

The communication gap between those of us that have Parkinson’s and those that do not. 

00:17:02 Daniel 

Well, this wraps up Season 2 episode one. 

00:17:05 Daniel 

Thank you so much for joining me. 

00:17:07 Daniel 

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. 

00:17:19 Daniel 

Is going to have Brian back here I believe. 

00:17:22 Daniel 

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. 

00:17:43 Daniel 

5-6 or you can email us at parkinsonsandmainpodcast@gmail.com. Finally, we would appreciate it if you would give us a five star rating on Apple Podcasts, Google Podcasts, Spotify or wherever you listen to the show. 

00:18:01 Daniel 

Until next time, keep moving forward. 

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