EP-139 Ways To Break A Parkinson’s Freeze

SPEAKER_00 0:01

Welcome to I'm Not Dead Yet with Judy and Travis, a podcast about living an extraordinary life with extraordinary circumstances.

SPEAKER_02 0:16

Welcome to the I'm Not Dead Yet Podcast. I'm your co-host, Travis Robinson. I was diagnosed with Parkinson's disease at age 35 in 2014.

SPEAKER_01 0:39

And I'm your other co-host, Judy Yaris. My husband Sandy had Parkinson's disease for 18 years. I was his care partner.

Freezing While Twisting And Bending

SPEAKER_02 0:48

Today's episode will be unpacking a little bit of my personal symptoms and what they look like from my side of things. Hello, Judy, how are ya?

SPEAKER_01 1:11

Hi, Travis. I'm good. I'm finally not feeling jet-lagged. I had been away for almost three weeks traveling through Europe and Sweden, and it was a wonderful trip. But I came back and I didn't realize how tired I was when I got back. I thought I was not experiencing jet lagged, but I found myself going to sleep very early, waking up very early, and uh not quite feeling as top of the game as I do now. I'm finally back, I think.

SPEAKER_02 1:43

All right.

SPEAKER_01 1:46

So what's going on?

SPEAKER_02 1:49

So I occasionally freeze, which for some people it's a shuffling they get their feet stuck to the floor kind of thing at least that's how it's always described. For me it's very seldom when I'm walking or moving, but rather when I'm changing gears having to turn or bend over pick something up and then walk and move I will get stuck in the act of twisting or bending and that something that has caused me a great deal of first of all discomfort but also concerned Sure That makes sense Right And so I've been giving it a bit of thought and trying to cipher out like when it happens when in my med cycle it occurs and what can be done about it Okay So what have you discovered here? That it doesn't seem to matter one shit where I am in my mid cycle Okay Nor does it matter one tiny bit of shit how tired I am, how hungry I am, or how much I've had to drink.

Micro Moves That Break Freezing

SPEAKER_01 4:16

Okay. So it's just PD playing games with you, right? Yes. Oh nice. So what do you do? Like if you're by yourself and you're stuck in this awkward position of maybe halfway bending over or twisting to pick up something off the floor, and now you're stuck, how do you how do you get out of it?

SPEAKER_02 4:42

So that's something I've learned in part by working with some exceptional physical therapists, but also knowing myself and how my body mechanics work because I can always move at least one part of my body. And then from there it's a matter of focusing my attention on the part that can still move.

SPEAKER_01 5:40

Okay, so it's using your mind to get really directional and focused on what you need to do, like a step stone, correct?

SPEAKER_02 5:52

Right. Where I get hung up is when I get focused on whatever big movement I'm trying to do like if the task is bend over and pick up something off the floor, I might get stuck in the bend over position. But then I have to remember my hands are free and so I might push off the floor with my hand which will give me a momentum shift that is usually enough to unstick myself, or if it's not I can always sit down.

SPEAKER_01 7:07

Yeah, I mean this is an interesting thought. It's it's changing the focus on the part that's frustrating you and taking it, breaking it down into a smaller step to do something that's much less that seems much less important, but actually that's the thing that opens up the mind a little bit. It breaks that neuro, it breaks the it gives you a neuropathway that takes you to another place.

SPEAKER_02 7:38

Right. Exactly. And it's a little thing, but I found it to be very, very helpful in not getting myself royally stuck.

Cues, Breathing, And Using Gravity

SPEAKER_01 8:00

That's really great. I hope that this helps some of our listeners who suffer with this because freezing is a big thing for a lot of people. I remember one of our panels, one of, I think it was the male caregiver panel, when one of the care partners said they were crossing the street, and his wife got stuck in the middle of the intersection. And no matter what they did, she couldn't move. So he literally just picked her up and carried her to the corner. So, I mean, that was a great solution, but that doesn't always happen, or that's not always available to most people to have someone just pick you up and move you like a crane. So because when you're stiff like that, it's really difficult. So yes. So this is good. I know that some people have talked about humming a tune that that has helped in freezing, in breaking a freeze moment.

SPEAKER_02 9:06

Yes, you can hum a tune or look at an external cue on the ground, you can shine a laser pointer or whatnot. But I found all of those things imply that you've got the device handy or did you know the tune or whatever? Right. That always is something that for me I don't have to handy when I'm in this situation.

SPEAKER_01 9:56

And I would suspect that taking a couple deep breaths to kind of center yourself, because you're already going to be a bit worked up, right? That that might help you rethink like what's my next step? What can I do? Or what's the first step I can do to get me out of this pickle?

SPEAKER_02 10:17

Yes. And like I said, it's important to realize that you're never fully stuck. Even if you feel that way, there's always gravity which you can use to your advantage. We spend so much of our day resisting gravity that we don't pay attention to it, but you can always flop down, relax your posture or your steps, and then that will give you a movement. And from there you can move the part that is key.

Breakthrough Tremor After DBS Adjustments

SPEAKER_01 11:26

That sounds really good. That's great advice. I like that. So maybe for some people it would be helpful if they practice getting up off the floor, up and down from the floor, and usually you do that almost from an all-fours position, right? Using one knee. That's a good way to do it to strengthen yourself to do that. And this is where sit-to-stands come in, right? Because that helps strengthen you for getting up and down like that. So that could be helpful. Yeah, I think great advice. What other symptoms are you having? What other things have you noticed that are complex or maybe not so complex, but seem to give you a big challenge in your daily life now?

SPEAKER_02 12:17

In my daily, I've had a lot of breakthrough tremor, which is frustrating because generally tremor is something I don't suffer a lot from, but I've been playing with DBS settings and medication levels ever since the battery replacement in January, and so I've had more breakthrough tremor than before.

SPEAKER_01 13:07

Okay, so this brings up to me two good points. One, people think that when you have DBS, they set the DBS and that's it, you're just set and everything's great. And also that you have to really monitor yourself and keep logs to see what's going on once you've got your new DBS in place. And they've said it, right? Those are two things that come up with that.

SPEAKER_02 13:40

Yes. And same is true for any medication. Yeah. So in the process of doing all of that adjustment and fixing the tremor, sometimes the only thing for me to do when it gets real bad is to shake it off.

SPEAKER_01 14:17

Right. Do you put on Taylor Swift? Yes. Good. I'm glad to hear that.

Deliberate Movement To Stop Tremor

SPEAKER_02 14:27

But you can do it by forcing a deliberate movement that will override the signal for the resting tremor.

SPEAKER_01 14:45

Okay, break that down. Let's let's what do you mean by that?

SPEAKER_02 14:49

I mean if my hand is tremoring and it's getting to the point where it's really big in amplitude, then I flick it. I do this kind of water off the fingers motion very deliberately, four or five times in a row, and that will stop the tremor.

SPEAKER_01 15:26

Wow, that's cool. I just saw that happen. Very interesting, super cool. All right, that's great advice. I like that.

SPEAKER_02 15:37

Yeah.

SPEAKER_01 15:38

Now you've had DBS for a long time, and so now this is something new that's just been coming on, right?

SPEAKER_02 15:47

Well, it's new, but I've also been adjusting the settings since January. Okay, so for a few months. It's been quite an up and down process for me.

SPEAKER_01 16:11

Right, okay. Makes sense.

SPEAKER_02 16:15

Yes.

SPEAKER_01 16:17

Interesting new things and new developments for you.

Logging Symptoms And DBS Reality

SPEAKER_02 16:22

Yes, but I think it all comes down to my ability to self-observe and notate all of that.

SPEAKER_01 16:41

So once you do that, if you let's say you've got your notations in place, is this something that you're going to take to your MDS who does the programming and say, this is what's been going on, this is the time of day, this is what I've done to try to get rid of it. What do you think? Do you have that conversation, or is it just stuff that you're doing yourself?

SPEAKER_02 17:03

For the most part, my MDS listens to what I have to say, and it's not really a kind of relationship where I go in and ask him, well, what should I do? What do you think I need? Okay. It's more I go in with, hey, can we try this or this? And he makes those adjustments.

SPEAKER_01 17:44

Okay. That's a great approach, Travis. You're you're very proactive. So I think it's good for people to hear that because I think a lot of people expect their doctor to fix it. Like if they're having additional tremors or they're having more freezing, when they go to the doctor and they tell them, they expect them to say, Well, this is what you have to do to make that stop. But that's really not how it works with Parkinson's, right?

Self Advocacy With Your Neurologist

SPEAKER_02 18:16

No. And my doctor is great because he's open to my ideas. Good. And if I want to try something really wacky, he will just say, okay, but we can try this.

SPEAKER_01 18:43

Yeah, I mean, I I like this idea of that collaboration. But I do want to assure people that are out there that are not into collaboration. They just may not feel that they can manage it or they don't want to do that with their doctor, and they'd like to be more have the doctor have more control. And that's okay. It's just that you do have to be your own self-advocate in many instances when you have Parkinson's, right?

SPEAKER_02 19:17

Yes. I think that even if you want the doctor to have more control over what therapies you're taking or using, you've got to be even more admint about your symptomology. Yes. If you're not going to take a stand and do your own research to figure out like what your possible DBS setting should be, then you've got to communicate all of your symptoms to your doctor, and you can't expect them to be a mind reader or to know what you're like when you go home. They're only seeing you for fifteen minutes middle of the day on a given Tuesday. Yeah, that's true. And they have no idea what it's like to live in your skin. So if you want to help your doctor to help you, you've got to be able to communicate what your needs are.

SPEAKER_01 20:55

That's a really good point, Travis. I I think most people don't think of it that way. But your doctor is seeing you at a moment in time. And we already know that most people, when they go to the doctor and the doctor says, How are you doing? Most people say, Oh, I'm great, you know, or are fine. Because at that very moment they might be. But you have to be able to express to the doctor all the other things that are going on when you're not in the office, right? That's exactly. That's the most important part of self-advocacy that we can teach you.

SPEAKER_02 21:37

Yes. And that's where having the actual data really makes a big difference. Because let's say I want to go to the doctor and I haven't seen him for three months, which is not uncommon.

SPEAKER_01 22:00

No, sometimes it's six months or nine months for some people.

SPEAKER_02 22:04

Yeah. So I'm trying to tell him all the symptoms I've had in the last three months, but I also need to wait them in order of frequency impact and recentness. Right. Because if I tell him, Oh yeah, Doc, I was having trouble sleeping and da da da da he's gonna hear oh okay trouble sleeping. Let's adjust his sleep meds. Whereas the truth might be it bothered me for three nights four weeks ago and hasn't bothered me since. So that's not really the most pressing thing.

SPEAKER_01 23:07

No, not at all.

SPEAKER_02 23:09

But it's like I could tell him I'm having more breakthrough tremors, but if I don't qualify that and explain when I'm having the tremor and what steps I'm doing to mitigate it, he's gonna focus on that because that is what I've said. Right. Yeah, good point. So it's important if you're going to bring up symptoms and you don't have a symptom journal, at least take a few minutes and wrang them in order. Like yeah, you know, the sleep thing was a pain, but it's gone now. Or you know, the real problem is my constipation or my nervous laughing all the time or my emotional dysfunction. All of that is tossed up and juggled by the neurologist.

Tools For Tracking Symptoms

SPEAKER_01 24:41

Yes, for sure. So there are some tools that people can use to track symptoms. I know that what what was the there's an app. There's strive. Strive has one, right?

SPEAKER_02 24:56

Yeah.

SPEAKER_01 24:57

And that one is still, is that one still only compatible with the Apple Watch, right? I think it's the Apple Phone. Apple phone, right, not the watch necessarily, with the Apple phone. Okay.

SPEAKER_02 25:11

Right.

SPEAKER_01 25:12

And there are a couple more. I think Parkinson's foundation maybe has one. I think that they had something.

SPEAKER_02 25:20

There are a lot of ways to get around just writing it down.

SPEAKER_01 25:28

Right. Yeah. And you can talk it into your phone. You can do voice recording. Whether you're Android or Apple, it doesn't matter because they all have voice record. And you can just track it on a daily basis, do a little voice recording each day or when it's happening, make a notation and just say the day and time. This is what's going on. And it'll transcribe it, right? Am I right about that? That eventually you can get transcriptions of whatever you put in there. So you don't have you're not expected to write everything down, which I think is hard for people with PD.

SPEAKER_02 26:06

It can be that's for sure. Or at least reading it after you've written it down.

SPEAKER_01 26:16

Yeah, yeah. Trying to figure out what you've written is a big one. Most people say they can't read their own handwriting.

Fundraiser Plug And Goodbye

SPEAKER_02 26:23

So that's it for today's episode. I just wanted to bounce on that trick.

SPEAKER_01 26:38

I think that's fantastic. And I want to do a plug for the PCLA Laughing Matters, our comedy fundraiser at the improv on April 26th. Hopefully, this will get released before that. But we're really excited. There's still some tickets available. And if you're a VIP ticket, we have a really cool swag, and we'll be selling some PCLA swag and laughing matters swag. But it's going to be a really fun event, and it's a Sunday afternoon from 3 30 to 6. So just wanted to kind of throw that out there, Travis.

SPEAKER_02 27:15

Okay. Thank you. And that's a wrap. Bye.