I'm Not Dead Yet!
A close look at an extraordinary life with Parkinson's Disease. Quirky and irreverent hosts Judy & Travis take a look at this most tragic of events: life with an incurable disease and why it’s important to declare that I'm Not Dead Yet!
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I'm Not Dead Yet!
EP-122 Uses of Botox for Parkinson’s & gravity issues
Learn how Botox isn't just for wrinkles but can be a game-changer for Parkinson's symptoms like dystonia, toe curling, and drooling. Discover Sandy's transformative experience with Botox for long-term relief and hear the inspiring story of Mike Wyman, who used Botox to regain his speech and reduce drooling after a stroke. Mike's proactive approach, combining speech pathology and boxing, offers a hopeful blueprint for anyone navigating the complexities of living with Parkinson's.
Falls are no joke, especially when dealing with Parkinson's. We'll walk you through practical steps for fall prevention and injury management. From leveraging modern technology like the Apple Watch and Google Pixel Watch for fall detection to real-life experiences involving slips and trips, we emphasize the importance of safety measures. Listen as we share anecdotes and essential tips, particularly about the hazards of bathrooms, and hear about the importance of using good judgment to ensure your well-being. Plus, we invite you to share your own stories and stay engaged with your health journey.
- Co-hosts: Judy Yaras & Travis Robinson
- Editor & Audio Engineer: (EP1-100) Spencer Yaras
- Audio Engineering Intern: Ana MacAller
- Social Media Intern: Ana MacAller
www.INDYpodcast.net
Welcome to I'm Not Dead Yet with Judy and Travis, a podcast about living an extraordinary life with extraordinary circumstances. 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 2:And I'm your other co-host, Judy Yarris. My husband, Sandy, had Parkinson's disease for 18 years.
Speaker 1:I was his care partner.
Speaker 2:Today's episode will be talking about Botox injections and gravity oh, two of my favorite topics.
Speaker 1:Yes, whereas Botox is touted by so many Southern California Housewives as the anti-gravity agent.
Speaker 2:Yes, well, I really don't want to talk about it as an item that you use for wrinkles, although I do know a lot of people that have used Botox over the years for wrinkles. Yes, we both do.
Speaker 1:Yeah.
Speaker 2:And you can walk around in LA in certain parts of LA and see lots of Botox and even on celebrities. You know I have some theories on this, but I think you know it can be useful for people with PD and I think this is something a lot of people with Parkinson's may not know. The Botox is used frequently for a symptom of Parkinson's which is called dystonia and it can be very painful. It's a tightening of the muscles. It's an involuntary tightening. It can be really excruciatingly painful and there's not a lot that can right.
Speaker 1:I know you've had this it can be a real motherfucker, to put it mildly.
Speaker 2:Yes, yes, it is really debilitating, and so I know Sandy had it in his arm. It was hard to diagnose. He spent three days in a hospital and no one could figure out what it was. His movement disorder specialist had been out of town and none of the docs seemed to figure it out, figure it out. And when he got back about a week and a half later we were discussing it and he was pretty sure that it was dystonia that had occurred and recommended doing Botox shots in his arm.
Speaker 2:And he did them and for Sandy it was uber successful because it lasted for over a year, probably three years, I don't know. It was the craziest thing. They really were surprised that it would last that long, but it just went away. But most of the people that I know that have been doing Botox have done it for like once every three or four months and they usually do it in there around the neck and shoulder area. That gets extremely tight and a lot of spasming in that area. The other people that I know that have done it have used it in their foot with the toes curling, and that's been a really effective tool for many people.
Speaker 1:Yes, and you can hear the sighs of sympathy in a support group when you tell them that your toes are curling, and not in the ecstasy kind of way.
Speaker 2:Yes, that's right, it is painful, it can blow you out of your bed very quickly, screaming, and it just it affects your balance. Yes, 100%, and you know it can just be an awful, awful experience for people. And the reason that I want to bring it up is because I had a great conversation with a good friend of mine, mike Wyman, and he's a friend of the show he was on here, I think, in the early days we interviewed Mike. Mike is a YOPD, a young onset Parkinson's disease person who was diagnosed at age 36 with PD not dissimilar from you, travis, and he has had it for 24 years and he is doing amazingly well. And I'm going to just share a couple things because for a while he's had DBS and he's gone through periods of having some pretty gnarly things happen over the years, not from the DBS, but just from incidents with his Parkinson's and falls, all kinds of things.
Speaker 2:A lot of things we might even be talking about shortly with you about some of the incidents you've had, but the most recent was that as a young man of 60, mike developed. He ended up having a stroke some months ago and it was really impacting his Parkinson's and how his ability to communicate. It was really awful, not from a cognitive standpoint, but really from a physiological standpoint the mechanics of being able to speak, and he was having a lot of drooling, and so they finally decided to do some Botox for his drooling. And I want to preface it by saying I've known Mike for probably a good 20 years I think I would bet it's been that long. I met him shortly after he was diagnosed and his wife, nessa, is a good friend of mine and my inspiration for my care, partnering for all the years that I was there for Sandy. And this is really incredible that not only is he had this amazing stroke recovery, but now, after having Botox I think it's been three times he's had it for the drooling. Tonight we had a conversation and it was like no slurs, no drooling, his voice sounded clear. He's working with a speech pathologist for his voice. I know he's doing the Parkinson's voice project, so it's a lot of speaking with intention and I mean it's amazing. I was so excited. It made me just want to cry after talking with him because to see the transformation and to see him be able to do this.
Speaker 2:And what I want to tell you about Mike Wyman is that he works really hard, just as you do, travis. You guys put the time in to help yourselves and I think for me, that's the most inspirational thing that you both do is you don't just sit back and wait for something to happen or wait for something to get better. You are out there, you go to an OT, you go to a speech pathologist, you work out. He does boxing. I mean, I think there's so many elements to this of living a great life with Parkinson's, and no matter what takes him down, he always comes back up. It may take him a little longer sometimes from different things, but his attitude is so amazing and he just doesn't let it take him down. He picks himself up and he goes okay, what do I have to do? And I'm going to do it, and so I'm sharing this with our listeners today because I feel like it's a great point.
Speaker 2:It's not just you, travis, that does this.
Speaker 2:There are other people that make themselves get through the apathy, that make themselves get out of bed, get off the chair, turn off the TV and do something proactive that is going to make your life better, and it doesn't mean that it's going to last forever.
Speaker 2:It doesn't mean that it's going to be all day or for three weeks or a month. It just means that for right now, you're willing to give it your all so that you can have these moments that are really positive, and I think that's where Mike is today. He has so much gratitude for his life and for being able to be with his family and to be able to push through this, and it was so enlightening for me and exciting for me to be able to talk with him tonight. So I just wanted to share that and do a shout out to him and for those of you that are really struggling and you just can't imagine how you can take that next step. All it takes is one moment, one little step to try to get you to that next space of feeling better. And he does what his doctor says. He takes his meds. He just does it, you know, and it's the same thing that you do Travis. You do it because you know it's going to help certain camaraderie with Mike as a YOPN person is.
Speaker 2:We don't have the luxury of sitting on our laurels. We have to get up and make something of our lives if we want it to happen. I think that's true. I mean, I think maybe when you're older and you get PD, it's easier to say well, you know, I had my time, I did this, I was really productive, this is what I did. It was great, you know, and now I can just sort of sit back and see what happens. But for Mike and for you, there's no sitting back. It's like let's get out there and do it. I'm going to go play pickleball, I'm going to go box, I'm going to take a trip, I'm going to be the best that I can be while I can be.
Speaker 1:Yes, because the thing is Judy. The thing is Judy, we don't know what the next hour will bring. That's right. And so we've got to make the most of our lives while we're here, to live them Absolutely.
Speaker 2:This is it. You don't get a free pass. What do they call it a hall pass. It's been a long time since I've been in high school, so that's probably what it was. It was a hall pass. No one gets that anymore. I think we just have to push through it, but it's really inspiring, and so I know you wanted to talk a little bit about gravity.
Speaker 1:And my relationship therewith. Yes, let's hear a little bit about it therewith yes, let's of a shelf with my forehead, which provided a dramatic-looking injury, although I was not very hurt by it. But when Sarah came home, it was one of the first things that she asked about what happened to your face, and I just told her I fell and she laughed at that.
Speaker 2:So let's talk about that her leaving it at that. For you, travis, was that a good thing?
Speaker 1:Was it a bad thing? It was a very good thing because for me it represented a level of acceptance. I'm going to fall. That is something that comes along with PD, and the only thing I need to watch out for is making sure I don't get too hurt when it happens.
Speaker 2:So was there blood involved? Yes, no, bruise.
Speaker 1:Yes.
Speaker 2:Okay.
Speaker 1:There was a bit of blood because head injuries bleed a lot.
Speaker 2:Right, there's not a lot of other material there to protect you. So if Sarah had said to you she didn't ask any questions, she didn't say did you go to the doctor, Did you get it checked out, or did she just that was it.
Speaker 1:That was it.
Speaker 2:Kudos to Sarah for being able to do that. I think it's hard as a care partner to be able to do that, to be able to let go enough, to have enough trust in the person that has PD to, and I mean trust in the sense of knowing that if they felt they were hurt, they would go to a doctor and have it checked out, which you know, travis, I feel the same way. I think that I trust you enough because I know that you're. I think that I trust you enough because I know that you're as dangerous as a life that you live, which you do, you know, kind of on the edge doing things. I also know that you respect your life and you respect your body right, this is true, okay, so with that in mind, I know that if you felt that it was a problem for you, that you would want someone to check it out.
Speaker 2:The one thing I do want to say here, folks, is, sometimes a person can have a fall and their judgment may not be the best judgment to not go to the doctor, and I think that's something for some people. You have to look at that and some people wait several days and then they finally end up seeing a doctor because it just gets worse and worse and worse. So we're not saying if you fall, don't have it checked out. I'm especially strong in the if you hit your head, you go get that checked out.
Speaker 1:Make sure there isn't a brain bleed, because a lot of your body and how it's supposed to work can exercise a little more judgment in that arena, but when in doubt, check it out.
Speaker 2:Yes, yes, I think that's always the best way to go. At least let your doctor know that you had the fall. I think that's an important one. Even if you're not going to go in, let the PA know. Let you know. If they have a PA, let them know. Let someone in the office know that you've had this fall, and then it can be up to them to ask some questions to assess is this something that you need to have checked out?
Speaker 1:Right.
Speaker 2:And so I think that people have to use good judgment with it. A lot of times people don't want to go to the doctor because it's scary to them to think what could happen if they go to the doctor. But to me it's much scarier to think what could happen if you don't get it checked out, if you don't go to the doctor, if you don't get an x-ray or a CAT scan if you need be.
Speaker 1:Right.
Speaker 2:Certainly, if you feel dizzy, if you feel nauseous, any of the signs of concussion, if you're getting double vision, any of those things, clearly you need to go to the hospital.
Speaker 2:That's a 911 call Right, right, absolutely, and to let people know. I don't think we've ever discussed this before, at least here in the States. I know we have some international listeners, so I don't know how it works there, but at least in Los Angeles. Let's put it this way at least in Los Angeles, if you have a fall and you cannot get up, and maybe there's someone at your home but they cannot lift you up, you can make a non-emergent call to 911 and say that you need assistance with a fall and they will come without the sirens.
Speaker 1:It may take a little time, but they will get you off the floor and help you, which is very good news for folks who live in fear of that, yes, that they or their I'll take a tumble and they will be just stuck there Right and unable, as a care partner, to pick the person up.
Speaker 2:It's very, very difficult. One thing that can help you too if you work with an OT a lot of times they can show you ways of getting yourself up. If you've had a fall that isn't a major fall where you are able to pick yourself up, they can almost teach you how to fall. I think our friend, heather Kennedy, actually showed some did a demo once for a support group for us how to fall, how to roll when you have a fall. So I think it's really it's important to know that there's things you can do If your body is stronger, if you practice, sit to stands every day so that you can get yourself up and out of a chair without holding on that, you have the muscle in your legs, you can use your body, you'll get yourself off the floor. You can do it and that's an important thing if you have a fall.
Speaker 1:And it may take you a while, but that's okay, just take your time, move slowly and move, surely, and then you can write yourself.
Speaker 2:Yeah, and for those of you I know I'm a big Apple Watch proponent. Some people don't like to use the iWatch, but they do have a great feature on their watch that allows you. If you fall, they'll send you a message and say, judy, did you fall? And you have the option to say. And you have the option to say yes, I did, I need help, or no, I'm okay. I mean, I slipped. I walked out my back door and there was a little pool of water that I didn't realize was left from the night before. So it was a little bit slippery and I was wearing sort of like a rubbery shoe and slid on it and it was not a big thing, it was just like a little whoop, you know. And landed on on it and it was not a big thing, it was just like a little you know. And landed on my rear and my watch immediately notified me Judy, it looks like you fell. And I was able to say yes, but I'm totally fine, it's not a big deal.
Speaker 1:Right the Google Pixel watch.
Speaker 2:That's what I was wondering.
Speaker 1:Google Pixel Watch. That's what I was wondering who does that.
Speaker 2:Yeah, I was thinking that Google has to have a watch that does the same thing, I'm sure. So if you don't use an iWatch, you can use the Google Watch, but I recommend that for lots of people to use a watch that gives you that option. In the old days, there was always a commercial I've fallen and I can't get up and it was a commercial for something you would wear around your neck and you'd push the button, life alert, life alert and Sandy had those in the early days.
Speaker 2:He had them, he had them and there were different kinds, some of them. You rely on an operator answering and then if you don't respond, then they immediately call 911. There's a lot of different services like this, but I think, depending on who you are and your abilities, I think it's very helpful to have devices like this. We're in a great technology age and it's the perfect time. I mean, let's take advantage of the fact that we have these things available to us. It's really good. So can.
Speaker 2:I ask Travis, am I allowed to ask? Since Sarah did not ask, I'm going to ask how did you fall? Since Sarah did not ask, I'm going to ask how did you fall? Do you know?
Speaker 1:what happened? Yes, okay, I was reaching for a carton of laundry soap to add to the wash and to the wash and I slipped forward. Okay, not very far, but enough that I tagged my forehead on the corner of that soap shelf Right, which had to hurt yes, right, that had to be so uncomfortable and it did. After I got done swearing, I added the soap to my laundry and proceeded to continue with what I was doing.
Speaker 2:Did you put some ice on it afterwards? I always ice when I've done any kind of fall.
Speaker 1:If I had realized the extent of the damage I might have, but as it was, I did not realize I was leaking until I was reading something and tipped my head down, oh, and then Drip, drip, drip.
Speaker 2:Okay, yeah, on your book. Okay, all right.
Speaker 1:Yeah. Okay sometimes that happens. More swearing in suit and I got a paper towel.
Speaker 2:Okay, so then you took action at that point.
Speaker 1:Yes.
Speaker 2:It's funny that when we have a fall or we have an accident like that, sometimes you go into sort of a shock mode. I remember the very first big cycling accident I had, where I went over handlebars and slid on my face and then I was riding with a group of people and they looked at me and said, did you always have a chipped tooth in front? And I said maybe. And I said, but, I'm fine, I feel okay. And they said, well, I think you really need to ride back home. And I said, really, I'm feeling okay. No, we really think you need to ride home. And in fact one of the men that I was riding with said I'll ride back with you. And I said, great, I said I'll ride with you.
Speaker 2:And I remember at every stoplight when I was on my bike and people were like on the standing on the corner looking at me kind of horrified, and I thought, oh, it's because my shorts are torn. You know, like when you see someone that has a bike accident, your shorts are torn and my skin is hanging out. I really didn't realize how bad it was until I stopped at the farmer's market where I was going to meet Sandy who was dropping off one of the kids from work and people were just staring at me so badly and he took one look at me and went. What happened? And said you're going straight to the ER?
Speaker 2:And it turns out I had this pocket of yellowy. I don't want to get gross here, but anyway, I had really had a lot of gross flesh off my skin, like the skin was off of my face, and, needless to say, when I saw myself in a mirror at the ER it was really frightening and scary and I couldn't believe that I actually rode my bike back after having that accident. So the moral of the story is I'm much more ahead of myself now and I know that when you have accidents you really have to pay attention. Don't just write it off folks. I'm much more careful as I've aged and become more wisdom-based. So that's all I have to say. I don't want to gross anyone out here. It was pretty awful Right.
Speaker 1:And if you see a zombie riding her bike down the street, you might want to ask her if she's seen a doctor.
Speaker 2:Yes, yeah, I'm sure it just grossed people out. It kind of grossed me out when I saw it, you know, so I can imagine what other people were thinking at the time. So it's just something that I think you know. We look at falls and we know it's part of PD and we talk about it and we sort of sometimes we laugh about it a little bit and say, oh, this is just part of having PD, but people have cracked their heads open. You know my theory that your bathroom is not your friend. I love the concept of having padded bathrooms, because there's no part of a bathroom that isn't sharp and hard and has edges that you can kill yourself on and is slippery and is slippery on top of it.
Speaker 2:Yes, so you know, just pay attention, folks, and know that they do happen. It doesn't mean we can laugh about it, but it is really serious and you do need to get medical attention when you have a problem with something. So don't think we're blowing that off, you know. I just want to be clear about that.
Speaker 1:Yes, want to be clear about that. Yes, and if you've had an accident and want to write into the show and tell us about it, we'd love to hear it. Send us your war stories Right At IndiePodcastShow at Gmail. That's I-N-D-Y Podcast Show at Gmail d y podcast show at gmail and we'd love to hear from you absolutely great idea, travis okay, that's a wrap bing.
