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-124 The Vital Role of Care Partners in the Parkinson's Journey
What if the silent heroes of Parkinson's care aren't the patients themselves but the dedicated partners standing beside them? Join us as we uncover the vital, yet often overshadowed, role of care partners in navigating the Parkinson's journey. Hosts Travis Robinson and Judy Yarris, bring our personal experiences to light, highlighting the emotional and physical hurdles faced by those supporting someone with Parkinson's. Our conversation delves into the reality of denial in newly diagnosed individuals and how this can ripple through their support networks, emphasizing the imperative need for community support and the unsung resources that can make all the difference.
We also explore the evolving landscape of independence, where modern transportation options like Uber and Waymo are reshaping the dynamics of care. The episode sheds light on the importance of self-care and open communication for care partners, especially in a world still reeling from the isolation of the COVID era. Through personal stories, we touch on the unique challenges faced by families dealing with young-onset Parkinson's, offering a message of strength and unity. By sharing both struggles and triumphs, we aim to foster a sense of community and inspire listeners to connect, support, and empower each other through the Parkinson's 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. I'm Judy Yarris. My husband, Sandy, had Parkinson's disease for 18 years. I was his care partner. Today's episode will be talking about care partners.
Speaker 2:This is one of my favorite topics and one that a lot of people don't consider. You know, we talk about Parkinson's and we're always thinking about the person that has PD, but in reality, the family has PD, yes, and I think that's really important, and the care partner can be anyone. It doesn't have to be a family member, it doesn't have to be a spouse or a child or a parent. It can be a friend and a good friend that is there for you, and so I think it's important to say to the care partner that you're not alone. It's a very thankless job. I just want to say that.
Speaker 1:Yes, there are 90,000 new cases of PD diagnosed every year, so you are very much not alone.
Speaker 2:That's right, and that number has really gone up from a few years ago. It used to be 60,000. So it's really skyrocketed and more happening. I mean I think in some instances skyrocketed and more happening. I mean I think in some instances I've heard doctors say that it's a pandemic of Parkinson's that's occurring and people always say, well, why are there so many cases? And I always say there's so many different factors. It can be environmental, it can be injury, it can be, and they don't know where it starts. I mean, there's a lot of things that happen with it. I just heard about another NFL player that's been diagnosed with Parkinson's. Maybe I'm wrong, I think it was the Bears, but maybe he's on another team now, but anyway.
Speaker 2:So I think that what happens is that we're hearing more and more about it, and I guess that's my question hearing more and more about it, and I guess that's my question. My question is in underserved areas, the areas where we don't hear from people, how many more people with PD are there that don't go to the doctor, that feel there's a stigma? If you shake or if you have a little bit of a tremor or if you are falling over, you have these falls and you just don't want to admit that you've got something going on. So there's definitely an underserved population that we're not even counting Right. And so I think you know to kind of talk today a little bit about really like what is the role of the care partner. I know you and I have discussed this on different levels, travis, because when someone is newly diagnosed, I think family members immediately freak out, just like the person that was diagnosed freaks out.
Speaker 2:Yeah, that's fair and I don't think anyone ever talks about it. You know they talk about the person that's having to deal with it, but what about the people that are in the family? And I think for this thankless job of hanging in there with someone with PD and it's not that the person with the people with Parkinson's aren't grateful? I just want to say that I know that Sandy was totally grateful and he did thank me, but I also know there were times when I felt like you know you can thank me for this. You know I'm not doing it to get the thank you because I love you and you're my partner.
Speaker 2:But there's a certain level of it that I think people with PD forget to thank the person that they're living with for putting up with some of the shit that they do. And I know you're guilty of this because you like to do stuff that scares people. So I say that all the time. It always scares me. So I think kudos to Sarah, who is understanding and is there with you by your side. But I want to let our listeners know that it's not an easy road, the feelings that you have of this mixed emotion of I love them, I want to help them, but you're sort of a helpless person in this journey. You can support them in the way that they would like to be supported, but you cannot make them do anything really and truly.
Speaker 1:Right and it takes a lot to be able to recognize that, yes, I think.
Speaker 2:And there's a lot of cases where the partner, the care partner, acknowledges it and accepts it and says, oh, my partner has PD, but the person with PD is in total denial and doesn't want to acknowledge it. Right, yes, and they think no one knows and they think that they're not that different, but they're kind of moving in slow motion and no one notices it, right?
Speaker 1:Right, I will just sit here in my corner and y'all won't be able to tell that I have had an episode.
Speaker 2:Right, that's exactly right. And I think that makes it frustrating for us as care partners, because we want to be able to support the person. And how do you do that when they won't even acknowledge that what they're experiencing is PD, the fatigue, the lack of sleep. The fatigue, the lack of sleep, the difficulty eating and swallowing, I mean, I think there's so many components to this and we have to be there for the care partner. And I do want to say there's a lot of groups for care partners. There are a lot of support groups, and if you can reach out to others, if you have friends that are close friends, they may not understand what you're going through as a partner to someone with PD.
Speaker 1:Right, but someone who is also a partner to someone with PD, they will get it. When you talk about how hard it is to help someone put on their socks?
Speaker 2:Yes, absolutely. I just heard that there's a really cool new device that they use for helping you get your socks on. I've seen a couple things that you sort of you snap on the top and you pull up, but this sounds like it may be more mechanical and can really be good. I'm going to look into it because it sounded kind of cool. I just haven't seen it in action yet, but I'm going to do a little investigation on that. So if there's anyone out there that's using it, please write in and let us know how it works for you, because I think it could be very helpful.
Speaker 1:Yes.
Speaker 2:And I think the fact that there's a lot of research going on now and a lot of wonderful clinical trials. I think that some of them you can encourage your partner to go and sign up for these things. But you can't take them there. I mean, you can't push someone to do something they don't want to do. I sort of look at it. It's much like someone getting sober. You know, when someone has an addiction issue, you can't make them get sober. They have to want to get sober. And with PD it's the same thing. If someone is in denial, it's very hard to get them to see that other people can see it. They know that something is wrong and oftentimes they think maybe you're using drugs or you're drunk. They don't know what's going on, but they know something is off and that part, I think for the care partner, becomes a loaded cannon. How do you approach it?
Speaker 1:Right.
Speaker 2:You know. So how do you approach it? So my thing that I did at one point when we started to sort of I call it the takeaway. You know, when we kind of discuss with Sandy, okay, this is probably not a safe thing for you to be doing, like taking a shower or bathing, getting in the bathtub when I was not home, not safe and what I would do is, you know, he would say, well, I think I'm doing really great, and I would say, yes, you are doing really great, but I don't know if you realize really the way you're moving these days, and so I would shoot a video and then he'd always be surprised of what he looked like. You know, because you don't feel it sometimes it's just like me.
Speaker 2:I don't think of myself as being my actual chronological age. I'm somewhere stuck between. I don't know. My friend says I've graduated to 21 instead of 17, but I'm somewhere stuck between. I don't know. My friend says I've graduated to 21 instead of 17, but I'm somewhere a lot younger than I am in my mind and I don't feel that different. I see myself doing things and I'm going, oh, I can do this, but in reality I probably should not be doing it. Let's put it this way, and I think for the person with Parkinson's and it certainly was for Sandy it took him a while to acknowledge that it just wasn't safe for him to bathe by himself or take showers by himself. And for some folks they live by themselves and they don't have an in-house care partner or someone, a live-in, a life partner. And then what choice do you have? You have to bathe by yourself and you have to cook and do the things that a normal person would do, but you have to find safe ways to do it.
Speaker 1:Right.
Speaker 2:And that's always my takeaway for everything is what is safe for you, what is safe in your house, how are you able to live independently and be safe along the way?
Speaker 1:Yes, but that also comes down to your risk tolerance. Yes, I personally have no problem chopping vegetables. Right, my see that knife has something to take off a finger with.
Speaker 2:Yes, but sometimes you can do it safely, like you probably have a system that you use, obviously, yes, and so if you can do it I mean, in our house Sandy was really the cook for many, many years. I didn't cook that much until much later to come to grips with it together, like we sort of talked about it and decided that maybe this isn't in your best interest to do this, to cook this way. Like, I think, when he got some cognitive decline, when he got some cognitive decline, that's when I said nothing with fire. Does that make sense? You know, it was like try not to use the stove or the oven because I know I would come home from work and I could smell that something got burnt and I'm going. Did you almost set the house on fire with the toaster oven? Because it's an easy thing to do? I could do it in a minute, it's not hard to do.
Speaker 2:So I think we have to look at what are the things that you can do safely and effectively. And if you're someone that is uncomfortable watching the person in your life with PD chopping vegetables, then I say go into another room, right, right, don't look. Don't look, yeah, don't look. There's certain times you just have to turn away and hold your breath. It's not easy to do that, but it is one approach.
Speaker 2:You know and and I'm sure I was far from the perfect.
Speaker 2:I know I was far from the perfect care partner. Believe me, I was not not perfect in what I did with my skill level but I know that there were certain things I just had to give into and and I had to be willing to allow him the freedom to do what he felt he was comfortable doing and I think he was pretty good about. When he got to the place where he just didn't feel comfortable doing it, he stopped doing it. You know, like driving, for sure, when his doctor said you should stop driving, he just stopped driving, like the next day. We've talked about that before. For a lot of people it takes a much longer time, right, and that's a big issue, because that is a sign of independence being able to drive yourself places, yes, but between Lyft and Uber and now Waymo, the driverless cars that make me nervous when I'm driving next to them or behind them I think there's a lot of options for people that don't drive any longer and there isn't the stigma that oh you can't drive yourself.
Speaker 2:I think that's part of it too. You don't have that stigma.
Speaker 1:Yes, there's been a lot of changes socially and culturally, at least here in the Southland, absolutely.
Speaker 2:I mean more young people don't want to drive and they're willing to take Uber places, and I read an article that Waymo is very busy in the Bay Area taking kids to school because parents are both working. They can't ride in an Uber or a Lyft, but this doesn't have a driver and people are willing to put their kids in this driverless car, which the thought of that to me is out of the question. But I get it. I understand what they're doing with that. It just would not be me, but I don't think I've evolved at that level yet to do it. I don't want to put anyone in a driverless car, even though I think the safety rate is pretty good.
Speaker 2:I don't hear a lot of complaints about it, right, so you know, I think taking time as a care partner to also look at what your needs might be, and I think this is something that we overlook.
Speaker 2:Like, I know, when you have new moms and everybody said, oh, don't forget to take time for yourself, and they're going like when am I supposed to do that? I can barely go to the bathroom to go pee. That's almost impossible, and I sometimes feel that when you are certainly with people that are more advanced stages that are not so independent. That is very much the case that. Do they have time to really go to a support group? Do they have time to call a friend and say, hey, I feel like I'm drowning here? Do they have time to call a friend and say, hey, I feel like I'm drowning here? Do they have time to kind of hit that reality button of I'm concerned, my loved one, I see them losing ground. I can't really do anything to help with that other than just to be here and watch it, and that becomes extremely depressing and difficult than just to be here and watch it and that becomes extremely depressing and difficult.
Speaker 1:But I also have to recognize that if I'm feeling totally overwhelmed and depressed with it, I need to reach out to someone to help me and give me a hand with it.
Speaker 2:There's an old adage in the climbing community that you can't help someone if you yourself are incapable or incapacitated. I think that's true. So I think, understanding your position as the care partner, understanding the person with Parkinson's, how difficult it is for them as well, and that you come together, and I think it's all about communication Travis.
Speaker 1:Like I know, you and Sarah talk about a lot of stuff that's uncomfortable yes, we do, but I've had to occasionally remind her that, as difficult If uncle as it may be for her, it's no picnic for me either.
Speaker 2:Right, that's right, and that doesn't really make her feel any better, but it just makes her remind herself. You know that the two of you are doing this together and I think that's the point we want to get across here. Right Is that even if you live by yourself, even if you are the person with PD and you don't live with someone, there is community out here for you. There are people with PD. There's this podcast, there's webinars, there's classes you know PD exercise classes online. There's so many options dance classes, yoga, tai chi. I mean, there's a million things that you can do to connect with other people.
Speaker 2:And we've talked about isolation before on earlier episodes, about certainly coming off of COVID, how difficult it was for people who felt like they were on their own, by themselves. But now we have no excuse. We have to reach out. And even though COVID seems to be on an upswing in SoCal and probably around the globe, I would think it's just this is what we're living with now I think we still have to make a point of getting out and reaching out and trying to be there for each other. Yeah, and that's my point tonight, I think, is to let people know that if you feel that you're having difficulty and you can't make it. There's plenty of places for resources that you can look online over 65 or over 60, there's lots of senior centers in large cities and they have lots of services for families. And I think where it's really hard is like yourself a young onset person, right? Yes?
Speaker 1:It is a bitch.
Speaker 2:Yeah, I mean, and I don't see things like you know, when we talk about, I was saying, like AA, they have things like allotine and they have things for family members, but PD doesn't have that. We don't have groups for teenagers whose parents have PD and how to cope with it. And how do you deal with the emotions that you're already, as a teenager, experiencing highs and lows and now you're dealing with the fact that you see a parent that is struggling?
Speaker 2:Yes, as I am reminded, every time I visit family that doesn't see me as often, I can watch their shock at my decline, and that's not easy for any of us I know I've heard that many times in support groups where people have talked about that that that feeling of, oh, now they see what I'm really like, and that perception because we go into it, feeling we look pretty good, right, like for you.
Speaker 2:You're living with it every day, you know, and and we traveled together, travis, when we went to Barcelona last year and we, you know, and I think, not understanding for someone that does not see you regularly to see the struggle that you go through on a daily basis. It's not easy to watch, but we have to acknowledge that and know that you're always going to do the best you can do, that you're always going to do the best you can do and as a care partner, we can only do the best we can do what our bandwidth is to be able to accommodate this change in life. My friend Nessa I'm going to give a shout out to my good friend, nessa Wyman, who always said it's the new normal. You know, when there's a change she used to say well, I guess this is the new normal and I would remind myself of that that. You know, maybe it was really great. For four years we didn't see much of anything, no difference and now, all of a sudden, there's a big shift, right?
Speaker 1:And that might shift back in a day or a week or a year Exactly, or it might not.
Speaker 2:And so now we have to face that reality. What is the new normal? You know what is my new normal as a care partner? What am I able to handle, what am I willing to do partner, what am I able to handle, what am I willing to do? And I think when you get to a place where and this is something that I think is an important point now if you get to the place where you feel that you are not able to handle it, there is nothing wrong, there is no shame, there's no brownie points taken away from you.
Speaker 2:If you bring in a paid caregiver, the only thing that that is is it costs you a lot of money. It has its downside. It's financially very difficult and I would say for some families it is a burden to the family to have to bring a care partner in a caregiver, a paid caregiver. But I think it makes it difficult. But it is sometimes what you have to do. You have to bite the bullet, and I certainly know people that have had to use paid caregivers for a short time and then things get better again and they don't have the caregiver anymore. And I think that's the encouraging part is we don't know what we're looking at.
Speaker 2:I was emailing back and forth with someone who was saying you know, parkinson's is just not for the faint of heart. It is a tough disease. It is a hard one to have to cope with and to experience the hard side of it, which is that we don't get to choose what symptoms we're going to have. No, we don't Right, and you can do all the right things. You can exercise, you can eat healthy, you can take your meds, you can do all the things that make you strong and better and live your best life. But there will be days and times when it's not going to feel like this is the best that you can be, and so it's hard. It's hard for you and, again, it's hard for the care partner who's watching you experience this, and they just have to know that. You know you're always going to do the best that you can do within the confines of your abilities, both emotionally and physically. Yes, and those are the two areas that you have to consider.
Speaker 1:Yes.
Speaker 2:Because I can have a rough day physically but emotionally better off, and vice versa. So I think it just depends on where you are with it and know that every day is different.
Speaker 1:Every day is a challenge and you can get through it. Every day is also an opportunity to not let this disease take you out.
Speaker 2:Yes, I agree with that, travis.
Speaker 2:Your attitude, your perception of how you see yourself, the strength that you bring to the table, I mean that's inspiring for people and people look at that and they look up to you.
Speaker 2:Because of that, because you're willing to do the hard things, and you know how I feel about this that I admire you for doing this and being there for other people to show them that it is a challenge and it's a bitch and it's not fun. And you know like you would much rather be out climbing and taking photographs, but some days you just can't do it. So, you know, for those of you that are listening, we know we're with you, we're here for you and, um, and if you need resources, check in with us. You know we, we know a lot of what's going on around the country and we get notices about things happening around the world sometimes. So just check in and see and let's look at how we bring the Parkinson's community together to make it stronger and more effective, because I think the power of unity, of people being close to each other and sharing and experiencing this, can make it a lot easier to deal with.
Speaker 1:Yes, and that's a wrap, bing.
