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-132 Rebuilding Life After Loss: Moving Houses, Travel Adventures, and Medical Innovations
Fire took everything Travis owned in just 15 minutes. With his Parkinson's disease symptoms flaring from stress, he faced the seemingly impossible task of rebuilding a life from scratch while his body fought against him. This raw, powerful episode explores the unexpected challenges that emerged when Travis had to relocate to a new house in just four days—a home that, while larger, presents accessibility nightmares with its multiple levels and problematic doorways.
Travis takes us on his recent whirlwind journey, from navigating airport security with specialized photography equipment to attending a friend's wedding in upstate New York. The conversation reveals how even routine travel becomes a logistical puzzle when managing a progressive neurological condition, yet Travis refuses to let these obstacles limit his experiences.
Hope shines through as Travis shares exciting news about a potential game-changer in his treatment plan. He's been fast-tracked for the innovative Vyalev Pump system—a subcutaneous infusion device similar to an insulin pump that provides continuous medication. This development offers a glimpse into how medical innovation continues to improve quality of life for those with Parkinson's.
The most touching moments come when Travis articulates the unique grief of losing personal possessions in the fire. "It's not mourning the stuff," he explains, "it's mourning the experience you had with that stuff." His perspective offers profound insight into the emotional dimensions of loss that extend far beyond material value.
Travis's story is a masterclass in resilience—not because he never struggles, but because he continues forward despite overwhelming circumstances. His determination to rebuild his photography archive symbolizes his broader approach to life: acknowledging loss while refusing to be defined by it. Listen now and discover how extraordinary circumstances can reveal extraordinary strength.
- 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. And welcome to the I'm Not Dead Yet podcast. I'm your 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. I was his care partner.
Speaker 1:Today's episode will be catching up with me. I've had the whirlwind of activity this month and just now getting a moment to breathe and talk to Judy about it.
Speaker 2:Hi, travis, I feel like it's been forever since we've connected. It's been a while. You've been very busy, right.
Speaker 1:I have been.
Speaker 2:So let's talk a little bit. Tell me, I understand that you've moved right.
Speaker 1:I did. We had to move houses and we had to do it in four days?
Speaker 2:What that F? Are you kidding me? I mean, come on, I just want to for point of reference, for if you've never heard this podcast before and you don't know Travis, you don't know me. But Travis happened to be one of the fire victims from Altadena. Their house burnt down in the Altadena fire and he literally had 15 minutes to get out the door with his dogs, his cats and whatever personal belongings he could get. And so I guess, based on that Travis, four days is like you had forever to get out of the house.
Speaker 1:Right, yes, except we had to take everything and clean up.
Speaker 2:Yeah, bad, unfortunate, I'm so sorry. So that must have been highly stressful for you Again, coming already from a stressful living environment. That was a little bit too small for you and Sarah and the two dogs and two cats. Right, and ideally not perfect, but you were making it work. And now you did find another place, right, yeah, and does this place have any challenges for you, or is it perfect?
Speaker 1:It has a few challenges. Okay, it's much larger, which is good, but it's also multi-leveled, which is not as good for me. Yeah, that doesn't sound like an ideal situation it has some unergonomic corners and doorways you know that open the wrong way, ah, that have caused me a bit of trouble, especially when I'm rushing to the toilet or trying to get something. And yeah, I mean in many ways it's a great location and other fun things, but it is not laid out with the ADA or Parkinson's person in mind.
Speaker 2:Right, it sounds like this could be a challenging space for you, and since you haven't started building the new house, you could be here for at least a year, right? Yes, so you're going to have to up your mindfulness as you maneuver in this house. Yes, is there a toilet on the first floor or only on the second floor?
Speaker 1:Um, there are two toilets on the first floor. Oh good, okay, which is a super big improvement for us, having lived in single-bedroom domiciles for a few years now.
Speaker 2:Yeah, so that's positive. Yes, so we've got to look at the plus side here. It's just that bad corners and doors that don't open the way we think they're going to open can be a bit of a problem. Exactly so. Are you putting signs on the door, anything that could help you remember that this door opens out or this door opens in, or anything special like that?
Speaker 1:Just trying to be mindful of it.
Speaker 2:Okay, well, that's good. So you know what you have to do. Yeah, okay, well, that's good, so you know what you have to do. Yeah, okay, how did you maneuver getting out in four days, though that seems kind of a short time to move all your belongings and everything.
Speaker 1:Well, first of all, they are only the belongings that we had acquired in the last six months. It's true, okay. And second of all, since we left the country on the 5th of July and got the keys on the first, that was what we had to do.
Speaker 2:I see why it was only four days. Okay, yeah, okay. So you had a great trip. You went to New York, right? We?
Speaker 1:did? We went to upstate New York to a very good friend's wedding.
Speaker 2:Nice, where were you? What part of upstate New York?
Speaker 1:We were in the little village of Warwick.
Speaker 2:Warwick. Never heard of it but I have a good friend that has a house up in Franklin and she loves it up there. It's wonderful.
Speaker 1:Yes, it was very pretty to drive through and I expect in the fall there will be all the brilliant leaves.
Speaker 2:Yes, it's very, very pretty there.
Speaker 1:So that was a good trip. We got to see him and his wife and many of their friends and sit around telling stories and bullshit and good drinking it was wonderful.
Speaker 2:Well, that's great. So that was your reward for getting up and moving out in four days. Right how that was a good reward. It turned out to be very successful. I'm glad to hear that. Did you do any special planning for travel? I know that you are our consummate traveler and you're always prepared to do these things.
Speaker 1:Yes, but this particular trip had a lot of logistical hurdles. Number one was I was going to New York directly off of a 11-day trip to Iceland Wow where I took an extensive array of photography equipment three pieces of checked luggage worth Wow and because I had so much photo equipment and a lot of it was like special handling getting through security, it was a lot.
Speaker 2:Yeah, I could see where that would be a lot. I mean, it's hard enough flying just with you and a suitcase or two, but when you have special equipment and you have to do special TSA stuff it makes it much more difficult.
Speaker 1:Yes.
Speaker 2:Did they hassle you at all with any of it or no? It was pretty easy once you were there.
Speaker 1:I wouldn't say that it was easy. I will say that we were successful and I credit Sarah for making sure that my film did not get x-rayed. Oh good, okay, yeah, she took point on that aspect of getting through security and I had two large bags of film.
Speaker 2:Oh, okay, so you weren't shooting digitally then I was doing both Okay, all right. So you were a little, what do they call it? You were analog. I'm part. Both Okay, all right. So you were a little. What do they call it? You were analog on part of this trip. Yeah, okay, yeah, A little different kind of trip. So, and getting to upstate New York, it's not like you fly in to that area, you go to New York City, right, I flew in from JFK.
Speaker 1:Got around there and drove.
Speaker 2:Uh-huh. So that's a couple of hours extra, two, three hours in the mix.
Speaker 1:Yes.
Speaker 2:After a lengthy plane ride I could see where that could be difficult.
Speaker 1:Yes.
Speaker 2:How have your symptoms been lately? You know you went through a period where you were having a lot of dystonia, a lot of dyskinesias, a lot of difficulty, which we try. I think that we decided that so much of it was stress-related due to the fires and the changes in your environment and everything. How have you been feeling since then?
Speaker 1:No, no Knowledge is there. Probably because of my stress, They've been bad. It's been difficult to talk. It's been difficult to talk and I've had problems with urine incontinence and constipation and a host of other meaty bugaboos, Right. But I saw my MDS yesterday got a tiny DVS adjustment and I'm now on the list waiting for the violet pump. Oh good, Okay, so hopefully that will make a difference.
Speaker 2:I hope so, Travis. I hope that will help you. So people know that Travis has had DBS. He got an upgrade. Was it a year ago or a year and a half ago? I'm trying to remember.
Speaker 1:Upgrade was in 2020. Really. And then the second upgrade was 2023.
Speaker 2:2023,. Wow, I've lost track of time, travis. What can I say?
Speaker 1:It happened.
Speaker 2:So do you want to explain what this new system is? Do you want to talk a little bit about it, or do you want to wait?
Speaker 1:Sure we can, we can. So the Vial of Pump is made by the drug company Avvi, who made the Duopa system, which is the continuous intestinal infusion, and a number of years ago they started working on a subcutaneous infusion system that just pokes in your belly much like an insulin pump.
Speaker 2:Right, it's not a big deal, no, it's something you do at home.
Speaker 1:You can set the home up at home. You can disconnect it if you need to, or our constant drip of Carbidopa, levodopa.
Speaker 2:Which is good, that's good. It's what you need, right? How long is the waiting list now, do they say when? You might be able to qualify for it.
Speaker 1:Um, I'm kind of fast-tracked through it. I expect to have it within a month.
Speaker 2:That's wonderful. Yeah, that's really really good. I'm glad to hear that.
Speaker 1:And as I have a number of friends who are on it, it promises to be pretty much a game changer.
Speaker 2:Great, I'm going to keep my fingers crossed that this goes smoothly. You need one thing to go real easy this year, right? Yes, at least one, At least one. I mean, you don't let many things take you down, which is great. But you know, there is a point where sometimes you just get a little bit discouraged, Am I right? Yes, yeah, a little bit sometimes, but as long as I have known you, you have always been very instrumental in turning yourself around and finding something positive to focus on.
Speaker 1:Yes, taking oneself out of a hole is easier when you have so much practice putting yourself in those holes.
Speaker 2:Right, and it's much easier to get into it than to get out of it. For sure, yes, very easy to slide down. So so much for that, but you know.
Speaker 1:The other thing that the bigger house allows for is purchasing equipment to replace some of the equipment that I lost.
Speaker 2:Well, that's good, because then you'll have access to what you need to do, the new photography that you want to do Right.
Speaker 1:But then there's the fact that I have to purchase all of it, right, and it still boggles my mind that six months after the fire, I'm still running across shit that I'm surprised I don't have.
Speaker 2:I think that makes sense, though, because we don't realize what we're missing until we go to use it right. I mean, you can go through a list. It's like you know, certainly I'm in that position, like I couldn't keep a list of everything that I have, but I had a strange thing happen. It was actually very nice and wonderful that a friend of mine that used to work for me she worked for me for like 25 years, and each time I moved to a new location or set up a new studio, she came with me and she had to come to LA for a visit to see a doctor, so she stayed with me, which was really nice. We got to catch up.
Speaker 2:We went to go sew something and, for those of you that don't know, for many years I was in the clothing design business, and so I had my own studio and it was set up very nicely with not only, you know, commercial machines but thread, everything that you could want. And I realized I didn't have thread, because when I decided to break down my studio, I donated everything to a friend that is working at a college up in Northern California that was setting up a fashion design program. So I donated all this thread. I donated all the notions, everything to them and then went to go sew something and realized I couldn't find a needle, couldn't find thread, that I had to go buy a spool of thread and buy some needles and I hadn't thought about it because I haven't mended anything for a while.
Speaker 2:I haven't needed anything to do and it's been over a year since I broke down that space for that purpose and I thought I wonder what else is going to turn up along the way that I may have forgotten that. You know, at some point I might need it. Now I recognized when I needed to replace an iron. I didn't have an iron and I had to replace that. But so I can really see where there I'm sure there's small things from lenses or little items, little ephemera that you use as you are doing your photography. I know you do a lot of your own developing. There's probably things that you wouldn't think about initially.
Speaker 1:Yes.
Speaker 2:So I can appreciate that.
Speaker 1:It can be challenging. Understand is you have no idea how much of that little ephemera you collect over an adult's lifetime. Yes, Right.
Speaker 2:So it's quite a bit. And even though you're young you still collect. So I can see at least you're young to me. You might not be young to a 20-year-old, but you're definitely young to me. So I still consider you a kid like. But I think you're right, travis, that for those of us that have maybe we've had other kinds of losses but to lose everything and to start from scratch, it seems so overwhelming to me and hard to imagine. So you know, I just I'm sure it's been very, very difficult for you along the way.
Speaker 1:I mean it has, and you sometimes feel guilty about mourning the stuff because it's just stuff, but then it's like you're mourning the experience that you had with that stuff.
Speaker 2:Yes, I understand that. Again, I can understand that part. I know there's people that are organizers and people that are really, you know, very much into not holding on to things. I don't know what the word is for that type of personality, but I know a lot of people that are like that. They just do not collect.
Speaker 2:But I do collect and the things that I have, I do have those memories of where I got it and what was significant about it, and certain things that Sandy and I got together, certain things I got separately, things he bought for me, things I bought for him, and when I think about that, it's the memories that are probably the hurtful part of it. Right, Right, yeah, it's not that the item isn't there, it's that when you would look at that item isn't there, it's that when you would look at that item, you would flash back to what that experience was acquiring that item. And you don't have that now. I mean, you still have it. It's still there in your brain, it's still in your heart, but I think to not have it as a reference point is difficult.
Speaker 1:Right. Yeah, and it comes up in the strangest ways, and so fast. Something like I was looking at photos my niece took in Italy and I commented that 30 years later they still haven't fixed the fucking windows in the Coliseum. Because I have photos of the same building where I did you know you're gone now.
Speaker 2:So does it make you feel I mean, I'm assuming there's a certain amount of sadness with that are you able to turn that sadness a different direction or move away from the sadness? And how do you do that? Because we're talking about loss here, and which we've talked about before. But how do you do that? Because we're talking about loss here, which we've talked about before, but how do you process that?
Speaker 1:Yeah, I don't know. I don't have a real good way when I realize that those images are only in my memory. It is a bit sad that I can't share them with my niece.
Speaker 2:Yes, I'm sure.
Speaker 1:But they have slug hair. Such is war.
Speaker 2:Yeah, I mean, this is what you've done, travis. You're able to move on with it, and I think that's the inspiration that you bring to this experience that you're willing to not dwell in it, but to move on to the next thing, and so you're making new experiences, right?
Speaker 1:Yes, and I'm rebuilding my photo archive Right as quickly as possible, okay.
Speaker 2:So there you have it. You've started the healing process and that's really good. I'm proud of you, very proud of you. I'm proud to be your friend and I'm proud of the way you have managed to get through this first six months of the year and now we're starting on the back half and it's pretty remarkable to me that you've come through as strong as you have.
Speaker 1:Oh, thank you, and on that note, that's a wrap, bing.
