Transcript
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Welcome to I'm Not Dead Yet with Judy and Travis, a podcast about living an extraordinary life with extraordinary circumstances.
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Welcome to the I'm Not Dead Yet podcast.
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I'm your co-host, Travis Robinson.
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I was diagnosed with Parkinson's disease at age 35 in 2014.
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And I'm your other co-host, judy Yarris.
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My husband Sandy had Parkinson's disease for 18 years and I was his care partner Today's episode we'll be talking about.
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Oh, I get pissed off from time to time from having this damn disease.
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Hi Judy, how the hell are you?
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I'm good, travis.
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I've had a good day so far.
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I've spent a lot of time on the LA freeways, but overall my car is air-conditioned and drives and I'm not blowing gas, I'm not in an electric car and so it's fine.
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I'm happy, all is well.
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You know, for me All is well in Judy land.
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Yes, yes, no big complaints.
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Complaints today, can't whine about anything today, but uh, but I, I hear what you're saying.
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Like, you know, there's, there just are some days when you just go.
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But I do not want to have parkinson disease.
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This is not the day for it.
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I don't need this and I don't want it.
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Right.
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Right Then.
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Yesterday was just such a day for me.
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I spell, and that wasn't a big deal and that wasn't a big deal, but I lost my balance in the most stupid way.
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I was leaning a little sideways to pick up something from the ground and lost my balance, went head over to kettle and crashed and fucking hurt.
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Yeah, I'm tired of hurting.
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I smacked Elmo and a jammed thumb and injuries on the front and back of my body.
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So I am just tired of that.
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I get it.
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Travis, I do.
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I mean, I went to make dinner for myself and dropped my fork five fucking times.
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The last time I almost fell out of my chair reaching for it again.
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So I was just really sick and tired of where PD had left me.
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I hear you, travis, I mean I do and I know that frustration.
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I've seen it firsthand and I hear it in support groups and I hear it from you, and it's a tough one because that first fall that you had kind of set the tone for the day right, like if you fuck something up first thing in the day, then it seems like the rest of the day you're catching up to more things happening.
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Yeah, it's a spiral, you know, a bad chain of events that keep happening and I I wish there was a solution, a great tool I could give you.
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The only thing I can think of is, once you've had that kind of a fall, that kind of startles your body jarls, your, you know, startles your body jarls, your, you know, startles the body, and that's the word I'm looking for.
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I can't think of it.
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That sort of shocks the brain.
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You know it's a surprise and it's painful and you're pissed about it.
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There has to be a moment afterwards where you could literally just stop and close your eyes and reset everything, reset the frigging day at that point, you know, just reset it, because otherwise what happens is it's sort of in the back of the mind and it's just festering there that you had that fall.
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And now anything that happens dropping your fork, making dinner, anything that isn't smooth is going to keep feeding into that folder in the brain of things to piss me off for the day, right, right.
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Things to piss me off for the day, right, right.
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So there has to be a way of taking the folder and acknowledging it and then sticking it in the shredder you know, so it's gone before you go into the next part of your day.
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Does that make sense?
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It does, because so many little things happened that normally would not be big deals.
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Already pissed about the fall, they, in my mind, escalated.
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You know.
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The doctor called and said me to get labs done before my next appointment and I was furious.
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Now, why did that make you laugh?
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What made you mad about it?
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They hadn't said anything when I got the appointment.
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And I got a telemed appointment so I would not have to go into the office, but the lab is in the same fucking building.
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So driving into the lab pretty much defeats the advantage of a telemed appointment.
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Advantage of a telemed appointment yes, right, that's true.
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So there you go, and it's understandable.
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I mean, I'm sure maybe in hindsight they thought that maybe it was a good time.
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They didn't really think about it at the time you made the appointment.
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But now here it is and they want to see the meds or see the blood work, which is a good thing, right, right, we like that.
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They're being conscientious, right?
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Yes, and it's not even that I was really upset about the request, but it came on the last straw of the day.
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Right, it was like one more thing to deal with.
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And I think, people that have PD, you're so focused on so much around your PD, it sort of envelops your day on how to walk, how to talk, how to eat, how to speak, how to poop, how to do all these things that you have to do.
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All these things that you have to do no-transcript.
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Yes, and it was in my mind at the time, a very insult to my abilities.
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Because here they are saying oh okay, mr Robinson, well, this is all the point for you, so you don't have to come in.
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And then they turn around and, oh, you've got to come in before the appointment and run labs, which is all well and good, but calling me at 5.30 on a Tuesday Telling me that I have to do something before an appointment on Thursday yeah, I didn't give you time.
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That's not enough time.
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Pretty much means I had to go this morning to take care of it, Otherwise the doctor wouldn't have the lab results before my appointment, right, which is important, right.
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So check it off to one more thing I have to do, one more thing that makes me leave the house and drive and find a parking spot, which, for those of you that live in LA, you know that this is no easy experience If you live outside of Los Angeles, I think a lot of people don't quite understand.
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Not just the traffic but the parking situation for any doctor's appointment always seems to be challenging, right?
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And regardless of the fact that I have a handicap, a lacquer, when you're going to a doctor's office, so does everybody else.
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Yes, it doesn't mean a lot in a medical building, that's for sure.
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There's a lot of people with it, so it doesn't buy you a lot to have it.
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Well, I'm sorry you had that day, travis.
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You know I was thinking to myself for a moment.
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Is mercury in retrograde?
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You know, for those folks that are astrology, but whenever I'd have a really terrible day, someone would always say, oh, mercury must be in retrograde.
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You know, but I don't really know what that means, other than you can have a really disastrous day and that's.
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You know, you're not supposed to sign important paperwork.
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Buy a house.
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You're not supposed to sign important paperwork.
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Buy a house, sign papers for things like that bank loans on that day.
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So but I think it.
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You know.
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To put it into perspective, it's not.
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It's not unfounded.
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It's like you have a good reason why you're annoyed.
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You have a good reason why it becomes so inconvenient for you, especially when you planned a telemed appointment where you weren't going to have to go in.
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Is there a lab that's close to your house?
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I know some people go to, like Quest or I forget what the other one is, and they run labs there.
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But it all depends on your insurance, right?
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And also the speed at which those labs can get the results from my doctor.
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Yeah, so I chose to go in this morning to the lab on the first floor of her medical building.
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Okay, good, so that they would have the fastest turnaround Right.
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They can do its stat and they'll get the info to Earth before your appointment tomorrow.
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Yes, well, I'm sorry that that happened, you know, and we can take a minute and just talk about falls.
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Falls are part of life with Parkinson's, and, although everyone we try to not make it like it's the most horrific, horrible thing that can happen to you, in some instances it can be very serious and it can be extremely debilitating.
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In some cases not so much, but falls are never good and it does set you off on a.
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I just feel like I tried to think back with Sandy Like if he had a fall.
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It just seemed like I tried to think back with Sandy like if he had a fall.
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It just seemed like after that one fall, then there'd either be two more falls and something else that would happen.
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That would just be so frustrating that he'd want to like throw either throw the computer across the room, throw his phone across the room, throw me across the room.
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You know his phone across the room, throw me across the room.
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You know it's just like that.
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Yeah, it's strange to do that, but I think it was just that feeling of frustration that overtakes so many people when you're dealing with medical issues.
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Right, right.
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And other things, like the dogs barking when Sarah came home and the alarm going off on her fish tank, okay, or things that were driving me mad, right, because, okay, now I've got to get into my pocket and grab my phone, pull up the app, turn off the alarm, all this when I'm trying to eat.
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Right, too many activities at one time, too much multitasking, right, right, probably it's a good idea.
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Okay, I'm going to give you another simplified tool.
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When you sit down to eat, take your phone out of your pocket and put it on the table next to you, because the truth of the matter is it is so hard to get a phone out of a pocket For a normal person, for someone that I shouldn't say normal, but for a person that doesn't have PD, it's hard to get a phone out of a pocket.
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It just gets worse and worse.
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You know it's a struggle to do that, so maybe from now on, a good lesson is put the phone on the table next to you so at least if you have to answer it, if you have to turn off an alarm, you have it right there and you don't have the frustration of getting the phone out and worried about not hitting it at the right time.
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Yes, and today I'm wearing armor to protect myself in case of another fall.
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Well, that's a good idea.
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It's not if, but when.
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Yes, it seems like for some people there are weeks there might be one week where there's multiple falls.
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You could go months or a month without it, weeks without it, days without it, and then all of a sudden there is a series of falls and you're kind of preparing yourself.
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Now.
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Yes, Well, for our listeners I can say that he doesn't look like a knight in shining armor.
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I can't see the protective gear, but I know that Travis sometimes uses that.
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I know people that walk around with knee pads and elbow pads all the time because they've had so many falls.
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So it's just part of life.
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And it means that today at least I can relax.
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Yes, not be so apprehensive, mm-hmm.
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You can kind of do your day without worrying about it.
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Yes, which takes one thing off my mental plate, which is a good thing.
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It is a good thing.
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I mean it's a good thing to start your day maybe with a little meditation, three minutes to just clear a reset.
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Three-minute reset, clear the mind, get yourself focused and kind of do an affirmation Today's going to be a better day.
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I'm okay today.
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I feel good, I feel strong, I'm going to get through today whatever comes my way.
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I mean that's a good one, even if you don't feel good or you don't feel strong.
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But just knowing that you can get through the day, whether it's good or bad, you'll survive it.
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I think sometimes reminding ourselves of that can be very helpful.
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Yes.
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So you know you have the tools, Travis, it's just implementing them and making them happen.
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Yes, so what does this do with you?
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Are you managing to stay cool in this 100 plus degree?
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weather don't keep my house set at 68.
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My house is set at like 76 or 77 and I have this thing that I do with dwp.
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So it's part of a um, a program to save energy, so they actually can manage my, my nest um, which is the little unit that has the temperature gauge.
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They can manage it during peak hours and it's actually pretty good.
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It's just that the way my house is set up and the way the original vents were done, the back of my house gets very cool and the front of my house gets like an oven by the afternoon.
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But that's because it's facing westward so I have that sun coming in and it's really it's hard to cool the front of the house.
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So I just stay to the back of the house, I stay in my little TV den room and that's where I kind of hang out and I keep my.
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I have my office here and it seems to be a good room because it doesn't get too hot in the afternoon.
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But then when I go out I do have to say that I've had to remind myself several occasions this summer to make sure that I have a water bottle with water in my car, like one of those metal water bottles I don't even know what it's called.
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There's a billion of them around.
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Water bottles I don't even know what it's called.
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There's a billion of them around.
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But I make sure that I have something in my car so, even if I'm running out for a short time, that I can hydrate myself when I get back in the car, because it's really hot.
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And I just want to say, at old age, I don't know if it's a hormonal thing, but I am a sweater now, like I really perspire.
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I don't remember being like this as a young person, except when I really worked out hard, but now if I'm in that really hot weather, I find myself perspiring a lot, which I think is good.
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It's good for your body to do that, but it can make me so tired so fast.
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So I just am making sure that I have water with electrolytes and I'm drinking throughout the day.
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You know, that's the key for me.
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Yes, and if you are like me and you steer clear of flat water, it's important to keep a stash of Leucoiganza Dobochico or some other sparkling mineral water.
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I know.
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I mean I think for a lot of people they don't.
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Sandy hated the taste of water and I used flavor enhancers for him in all of his water.
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Some of those have a lot of.
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Them used to have a lot of sugar.
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I mean I'm not a big Gatorade person, it's just too sweet, too much.
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But there's plenty of electrolyte replenishments that don't have a lot of sugar, that have a lot of sodium, have a lot of magnesium, a lot of calcium, and they seem to really put it back for me and I guess that's what I need after I've been out in the hot weather.
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I mean, you know, I left a garden.
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My garden looks like a desert right now because I haven't been spending much time out there.
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It's just way too hot to do anything and you can't plant anything in this kind of weather.
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It's not going to be successful.
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So Right, you almost need a chill house.
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Right, you almost need a chill house.
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Right, like folks that have the glass greenhouses, you need one with an air conditioner.
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Yeah, I mean, I think I'm very fortunate that I have a very huge tree.
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I call it my jack-in-the-bean stock tree.
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It's a tipi, tipu, tawanda and um.
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It's massive in my backyard and it was planted on the advice of a horticulture person that said, oh, this tree will grow fast and it'll give you lots of shade.
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I had no idea it was going to look like it's 100 years old in a matter of 12 years, and so it's grown very quickly and it's very big.
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But it does keep the back of the house more shaded, which is great.
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So I can't complain about it.
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I love it and I'm happy it's there.
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But I think those are the things that we have to look at as to how to keep ourselves cooler with this terrible weather.
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And I was talking with someone who was on the East Coast and he was saying that it was just nasty.
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He was in Florida and he said, if you want to talk about bad weather, the humidity there is so high.
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He said you just feel like you can't breathe.
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So I feel fortunate that we're in LA and although it's more humid than it's ever been you know, 40, 50% humidity here and there is not going to do me in when it's 80 and 90%.
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I just I can't imagine doing that on a daily basis by choice.
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Way too much, not not my thing.
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But you know I did want to say there's a lot of cool things that are happening in the pipeline of um, of Parkinson's awareness and Parkinson's drugs.
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We haven't really talked about the bill.
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I'm going to try to get someone on here to really talk about that bill that Biden signed for the Parkinson's Act and I think it's going to be fantastic to help stop Parkinson's.
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It's going to help bring more funding for organizations for PD.
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Hopefully PCOA will eventually someday be benefit as well.
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We probably would be low on the totem pole, but I think there's so much happening now with new developments, with guided ultrasound, with new forms of DBS, new ways of doing DBS.
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I think there's a lot that's out there that people can start looking at and saying, well, we have there's new ideas, there's new things happening.
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There's drugs that are very close to being approved by the FDA and I think that you know there's hope.
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You know that seems to be the word of the week this week is there is a lot of hope that they may not find a cure, but we can certainly hope, to help people find a better life for themselves, to live a better life with PD, and that's my goal is.
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You know?
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I know that I know when Sandy was diagnosed in the early 2000s, you know the talk was oh, we're five years out from a cure, and I'm, and now we're 20 years out from no cure and they still haven't figured out exactly what causes it beyond pesticides.
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And maybe it's the gut, maybe it's the olfactory bulb, maybe it's an insulin resistance.
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They're not sure about all of it or any of it.
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They're pretty close, but not there to really be able to make the statement, and it just means that we have to be very diligent in how we live our lives, if we're living as a person with Parkinson's or a care partner taking care of someone with Parkinson's Right, and so you know, I am hopeful.
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I think there's a lot going on now.
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Okay.
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Well, you folks out there, if you have had focused ultrasound ultrasound or know someone that has, write into the show and tell us about that.
00:29:35.221 --> 00:29:39.712
Yeah, it's Henry just said.
00:29:39.712 --> 00:29:49.079
Indie podcast Show at Gmail.
00:29:51.066 --> 00:29:54.471
That's Indie Podcast Show at Gmail.
00:29:54.471 --> 00:29:59.440
I-n-d-y-s-h-o-w at gmailcom.
00:29:59.440 --> 00:30:05.853
All right, Travis, See you next time Okay.
00:30:07.105 --> 00:30:09.845
That's a wrap, bing.
