Episode 185: Conversations with Our Loved Ones

Dan Keller 0:08

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

When one person develops Parkinson's disease, it really becomes a disease for the whole family, and even the circle of friends, acquaintances, and coworkers. Most intimately and continuously involved are care partners. They manage care and provide physical and emotional support to the person with Parkinson's, and these responsibilities have to be integrated with their own needs as individuals. For this episode, I spoke with two spouses about their roles and their relationships with their partners, each of whom has young-onset Parkinson's. Nikki Logan's husband, Jamie, had been diagnosed nine years earlier, as was CJ Polkinghorne's husband, Rex. They each describe the early days of their relationships and how life has been since then, starting with Nikki.

Nikki Logan 1:41

Jamie and I had been together for about two weeks, and he knew something was wrong for a few months, because we worked together for years, and he was like, his fingers were stuck on the keyboard, he couldn't move his fingers. But we went dancing, which is one of his favorite things to ever do in life, and he could not move his feet, so he just decided that he needed to do something. So what we did was go to his doctor's, PCP, and they said, "We're going to give you medication for Parkinson's, because we want to see if it works or if it doesn't work, and then we can kind of cancel one out." It worked, unfortunately. It worked, you know. We just dealt with it every day, and I haven't left his side since, and can never think about losing him or leaving him for any reason.

Dan Keller 2:25

And CJ, what about your husband, Rex? How did that go for you when he was first diagnosed?

CJ Polkinghorne 2:31

In all honesty, I wasn't there when he was first diagnosed. I found out about his diagnosis, I think on like our second or third date. We were both talking about long-term plans, where we saw this going anywhere, and he was like, "Well, I need you to know that this is something that I'm dealing with. I have early-onset Parkinson's." I have only known about it like through the Michael J. Fox of it all. So it actually took a moment for me to like understand and reflect on what I was in for, but I thought he was worth it, and we continued to date, and then eventually ended up getting married. So, yeah.

Dan Keller 3:08

So, how long have you been together?

CJ Polkinghorne 3:10

We've been together for seven years.

Dan Keller 3:14

Over that time, what kind of changes have you made along the way—daily routine or work or lifestyle—or how has your relationship accommodated? Let's say—

CJ Polkinghorn 3:27

That is such a good question. I embrace the idea of change, and we'll say that it has always been changing. There were lots of different situations since the time that we started dating. As I said, we like moved in together. We experienced COVID together. That was actually one of the things that made me realize I could do this long term, just like if we were the only two people in the world, which is what it was like for a little bit. We could stand each other.

So from there, we really dedicated ourselves to each other. I helped him with his parents passing. He retired. There were like all these other life events that were going on at the exact same time, and the Parkinson's just kind of became another part of the life that we were building together. So I witnessed him have the DBS surgery, I witnessed him try different medications, go do therapy, and the entire time making sure that I was trying to be a supportive partner while also defining myself in our relationship.

Dan Keller 4:29

How about you, Nikki? What's happened in the years since your husband's diagnosis?

Nikki Logan 4:36

Yeah, I felt like when that happened I wasn't leaving or going anywhere, but you know it didn't really sink in for quite some time, but I just knew that there's nothing changing, so we just have to go through the steps and make this happen. Since then, we both work together. I have been about three years changed to a different company, and Jamie was actually forced out of his company, or the company we worked for was forced out when they found out he was going to have deep brain stimulation surgery. He was actually the top salesman for them for years upon years, over 200 people, and they just found their way to force him out, which was just ridiculous to me.

So I have been the solo person working, and we've been kind of dealing with his deep brain stimulation surgery, which actually went better than I ever thought it would. I was more mortified than anything, but he did amazing. That's really helped him. But we've been kind of dealing with his mother passing during this as well, and also, like, my family, my parents are getting older, and things like that. So he's dealt with a lot of my emotions, because I don't do well with those kind of things, but I think we're a great team, and I just think that anything that's come to us, we work through it together—whether it's him needing more physical therapy or him needing massages for his things, or acupuncture. We always make it work, and I just want to make sure he has everything he needs, and hopefully the VA and disability will come through quicker than we're hoping, because we've been dealing with that since March of 2024.

Dan Keller 6:06

Wow, were there any concerns about trying to invoke the Americans with Disabilities Act or anything when he got his DBS and was being forced out of his job?

Nikki Logan 6:17

At that point, I think he was just so hurt he didn't even want to do anything about it, because he knew they were forcing him out, so he ended up leaving on his own accord, so he could keep himself, be like, "I'm leaving, I'm not allowing you to get rid of me this way." He actually found another job in insurance, which was a completely different world than we had before. He worked there for about nine days, and he couldn't do it, and I just said, "You have to do what you have to do. I'm not going to force you." He was exhausted. He slept almost 17 hours the first day he worked that weekend.

Dan Keller 6:51

Besides those disruptions, what about just the day-to-day stuff? How do you deal with transportation, and have there been any changes in nutrition or swallowing issues or things like that as things go by?

Nikki Logan 7:06

Yeah, so I know for us he's still driving. I mean, his driving really hasn't changed much. He still takes himself to appointments, things of that nature. If it's something where, like, he can't be on meds or something for it, and if I can't get that time off, his dad steps in and drives him to places, but really he's pretty self-reliant, which I'm pretty amazed by, because he's so positive as well. So he just keeps himself going, as well as me pushing him. But as of right now, he is driving himself everywhere.

CJ Polkinghorne 7:34

Yep, Rex is the same. Rex is driving himself, although he does it in limited bursts. We're very mindful of, like, when he's driving to make sure that he has the time to rest. I'll drive him to, like, his really big appointments or when there's a lot of heavy traffic. Stress tends to aggravate his symptoms, so traffic, especially in LA, is nothing but stress. So we try to be very mindful about how much time he spends on the road, and I think in terms of like the every day, it is like kind of taking it one day at a time and really learning where he's at mentally and physically each day and having to kind of like adjust to that.

Dan Keller 8:18

Both of you said that your partners were pretty upfront about their situation very early in the relationship. How has the relationship changed, and how do you deal with taking control when you need to and stepping back when you don't want to be controlling?

Nikki Logan 8:36

For us, I think our relationship has only gotten stronger over the years, because I don't think anyone—CJ, of course, can understand—but I don't think anyone else understands who hasn't had a partner that deals with this, and how every version of Parkinson's is different for every single person with Parkinson's. I don't think any relationship can understand the highs and lows that you have to get through, and if you can get through them every day and still go to bed loving each other and giving each other a kiss at night, that's all you need. And, like, I can't imagine me ever falling out of love with this man. I think I actually love him more every day, if that's possible.

I don't try to be like a nag, though I can be, like, "Have you taken your meds?" or "Why are you like..." I do. And he's had a conversation with me and been like, "Hey, I really need you to let me be me and not push me to do these things, because it makes me feel incapable, and I'm not to that point." So I've definitely stepped back at points, unless, like, it's his DBS unit he has not charged, which he has done that twice, and he's turned off, and it's horrifying. So, that's the only thing, and we've made a schedule, so now I trust him to do it. He's shown me that he can do it on his own, and you know, I'm kind of hands-off on that stuff at this point.

CJ Polkinghorne 9:53

Absolutely, to Nikki's point, it really is about communication, and one of the things Rex and I have worked on over the last seven years is learning how to communicate more, you know, learning couple therapy ways—not because we didn't get along, but because it allows a third party to kind of mitigate sometimes when we have very strong opinions. And then also in terms of being supportive, what Rex and I, the kind of conclusion we've come to, is I allow him to take care of himself and make all of his decisions, as long as they don't interfere directly with me.

What I mean by that is, if a decision he's going to make will add more burden or more weight onto me, then I actually do get a say, I get to speak up. And that's one of the things that we've had to navigate too, because you know he, of course, is doing his best, and he has a lot of things on his mind, just in terms of his day-to-day. But as his partner, whatever he can't do, I pick up the slack, and I know that he doesn't want to be a burden to me, so I'm not going to make him feel that way. But there are times where I have to say, "Hey, your actions or your behaviors, or you forgetting to take the meds, actually are adding to my day, and I need you to understand that."

Nikki Logan 11:14

I totally agree with everything you said, but we are also in couples counseling as well. We have been for a couple years, and again, nothing's wrong, but I want us both to be able to verbalize how we're feeling with a third person that can kind of help us work through it. So, I think that's amazing that you do that as well, CJ. Yeah.

Dan Keller 11:32

It's interesting that you're in couples counseling when there's nothing wrong, just because you want to make it better. I don't know if people really normally think that way.

CJ Polkinghorne 11:43

Yeah, you know, I think mental health in general is something, as Nikki was saying earlier, every Parkinson's is different, but I think one of the things I learned specifically with Rex is a lot of his symptoms are related to the amount of stress that he has. It is a neurological disease, and so the amount of taxation on his brain while it's trying to do the physical—like, keep his body together—his brain's tired. So added stress is going to aggravate him and leave less room for his body to take care of itself. So having to actually, like, learn how to be patient with each other, learning how to communicate, learning how to like cut through all of the emotional stress, only helped him, and only helped me by him, you know, having that clarity.

Dan Keller 12:34

I know fatigue is a problem for a lot of people with Parkinson's. Does that affect your spouses, and do you have to plan around it?

Nikki Logan 12:45

Yeah, so Jamie definitely gets tired, especially if there's been stress or something like that, or if he had physical therapy or gone to the gym. But like, we try to prepare ourselves days in advance. Like, I know this weekend we have our niece's birthday, and I have to do a lot of baking for it, which I adore, but, like, I know that I just want him to relax. Don't worry about being my sous chef or whatever he wants to be. I just want him to relax, like he can enjoy that time and be present. He obviously still wants to be very social with our friends, but at the same time, his health comes first. So I kind of, we prepare for those things, and also he naps more, or we just make sure the day after we have absolutely nothing to do, and he can just nap if he needs to as well.

CJ Polkinghorne 13:30

I love what you said, Nikki. I've noticed Rex definitely naps more, and it's been really important for him to like take that time. One of the things that we had to come to a conclusion on is that he needs to nap more during the daytime. He also wants to be involved, he wants to, you know, be out in the world, but he can get really tired. And in doing so, there have been plenty of times where we used to have, like, date nights and stuff, and he would just fall asleep while we were watching a movie, and it was like the one time that it was just supposed to be me and him, and he couldn't stay awake. Some of that was the medication, and he got on a different medication that turns out to not make him as tired.

But last night was a situation where right when I was making dinner, he was like, "Hey, I'm kind of spent, I'm gonna go lay down for a little bit," and he went and he laid down. And then I had cooked dinner, I ate by myself, but he was able to get back up and eat, and he felt better. And it's like, yeah, that's what your body needs. And we even express, like, while we're out with friends, I'm like, it's okay to, like, let them know, "Hey, I need to sit down for a little bit, I need to pull away for a little bit and take a little nap, and then come back." And in doing so, he's allowed to still attend these events, but also take the rest that he needs, and our friendships and our communities are only better because now they understand him, and they know that Rex wants to be there, but every now and then Rex needs to like take a little nap.

Dan Keller 15:00

How much support do you get from friends, family, and even support groups?

Nikki Logan 15:07

Like, my family is amazing. I think my mom is still a little bit in denial, even though she won't admit it, but she's amazing and very supportive. My mom is my best friend, so I talk to her about everything, good and bad, so she's very open to it. My dad is amazing as well. They're just amazing humans. His dad is very current in Jamie's life. He lives only 10 minutes away, so they're like besties as well. My friends are very supportive, though I don't lean on them so much. I just think they don't understand how hard it can be, because they see him at his best. They don't see him, like, you know, when he's bad, and things like that. So I'm never saying they've said this, but it is something that they may not be able to process fully, but, like, again, they don't live this life. I don't expect them to fully understand it, but you know, I do talk to them about it. My coworkers are super understanding, and they all love my husband when he stops in, so it's just something that, you know, I think we have very supportive friends and family.

Dan Keller 16:06

You really can't be the best caregiver unless you're taking care of yourself too. So, what do you do about that?

Nikki Logan 16:14

For me, I literally used to get massages and things like that, but we did have to cut down on like unneeded expenses, so I have no problems with that, as long as he's getting them. You know, I work in a plastic surgery office, so they give us very nice things, like facials on our lunch if we want, or, you know, all of that stuff, IV hydration if we feel drained. Like, they're very good about making sure we do self-care, because we do present ourselves to the public. But for me it's like going to the gym every single morning, making sure that I'm getting appropriate time with my friends and things like that. Being with family, to be honest—being with him kind of makes me feel better every day, too. Like, I don't love being away from him for eight hours, but he's understanding and supportive, you know. He's kind of like my sanity, to be blatantly honest. Even though he's going through all this, he still is my home and my harbor, and like, I just couldn't imagine not being around him. He's what keeps me going, really.

CJ Polkinghorne 17:10

That's so sweet, Nikki. It's so great to hear. We had talked about this earlier when I was able to meet you. Nikki is so protective of him, like she's like his guard, and it was so beautiful to watch and just see.

Nikki Logan 17:23

Thank you for that. It's the same with you and Rex, like you guys are such an adorable couple. You can just tell how much you love each other, just like by your smile with each other. It's amazing.

CJ Polkinghorne 17:33

Thank you. And then to your question, Dan, it's kind of the answer to both questions. One, I do have a community, we have friends who we are honest with. We're very selective, or he's very selective about who we told and how we told, and I let that go at his pace and what he needed. But there were times where I was like, "I need to speak to someone," so he let me have the confidence of certain people and let them know, and then that slowly grew into him learning or allowing himself to share. And that has helped us have other resources, in terms of sometimes I'm like, "You need to go hang out with other people, I need to be alone, you know," or I also do like the self-care of it all, in terms of like massages, or I enjoy my downtime, whether it's like watching a TV show or reading a book.

I do a lot of things that I make space for me, because in order to be a caretaker and a partner, it requires you to consistently think of the other person and consistently figure out, like, where they're at. And as you said earlier, balancing being proactive while taking a step back, so the only way to maintain that marathon of a relationship is to make sure that I carve out time and space for myself, and sometimes that includes just saying, "Hey, I need someone else to have the conversation with him tonight, so that I can have the conversation with them and want it, thanks to exactly—"

Dan Keller 19:04

Finally, to give a hopeful message to people who are just starting out on this journey, what do you wish you had known or had access to when it all began for you?

Nikki Logan 19:17

For me personally, I wish I had known anything about Parkinson's. The only thing I knew was Michael J. Fox, and that's all I ever put together with Parkinson's, and Jamie is completely different than Michael J, but his symptoms aren't as, like, extreme. But I just wish there was, like, more, especially in the area I'm in. In Maine, we have very little. We don't have much besides Rock Steady Boxing, which is amazing, obviously, but we don't have, like, a center of excellence. The nearest one we have is, like, hours away.

I also wish that we had known about support groups earlier. We run our own now. We took over for people that have been doing it for almost a decade, and that group is really amazing, and I think we have a really great group of people. But I just don't think that there's any way to just kind of get into it. I think you have to take it day by day, because again, every case is different, and every person's different. I guess I wish I had known how much it would change our lives a little bit, but I don't think you can make a handbook, because everyone's different. I just wish that I had known better ways to support him in that way, instead of being so like keeping him in bubble wrap a lot of the time. I just wish I had a little bit more knowledge of what to possibly expect, but again, you can't, with every case being different.

CJ Polkinghorne 20:35

And to your point, Nikki, I think it's really amazing that you said, "It's like I wish I knew how to better support, and I wish I knew, like, what to expect." And to me, I think one of the pieces of advice that I would give is that things don't have to be so different, in the sense of you still hit a lot of life goals—like we were still able to get married, you know, we were still able to get a dog. There were other life milestones that I think he and I were unsure in the beginning whether or not we'd be able to do. But by taking it one day at a time, we were like, "Oh, actually, a lot of this is still possible, we just have to adjust." Like, we have to adjust our expectations of each other, we have to adjust our expectations of ourselves. We have to adjust and accommodate for, you know, when he is tired or his med schedule. There's lots of things that we have to adjust, but that doesn't mean that we can't have—

Nikki Logan 21:35

No, 100%. You are so on point with that. We were able to get married, we have a dog, we have a cat, things like that. But I just wish we'd kind of known about Social Security or the VA, things like that—how to do it and how we should have started that process way earlier. And we didn't think of that, especially with disability or the VA, because he was working full-time and bringing in a really good income, and now that we're a one-person income right now—he gets a little bit from the VA, but he's not 100%. I just wish there was like a welcome guide, but of course there can't be.

So you know, I'm just hoping that, like, myself and CJ can kind of help people get through this and help them understand you're not alone, and that the disease obviously is more impactful to the person with Parkinson's. However, you're still in this as well. You have your own world and your own story with this, and you can't seclude yourself. You need to have a community. You can't just deal with it internally. You need to talk to people, because that's going to help you be better for them in the long run as well.

CJ Polkinghorne 22:41

Absolutely, Nikki. You said something that was so amazing, which is this idea of wishing that there were like more resources or like even a list of things, because you're absolutely right. I would say when Rex retired, there was so much we had to like look into and be prepared for. There's so much paperwork they expect people with Parkinson's disease to do, and like, luckily enough I'm here, and I can write and fill out the form if Rex needs. But like, I always think to myself about the person who doesn't have a caretaker, or if that caretaker exactly has the same inability to fill out the form, it's really interesting.

So being able to plan now for the future, as Nikki was saying—this idea of they're good now, it's like, "Yeah, but you should have a plan now, you should have a lawyer now, you should really be looking into what the next few years could look like," and not in a panicky way, but just like in a preparation and a proactive way. Because our systems are not made to make this easy. As Nikki said, we'll get pushback, and they'll be like, "Oh, he can work." Like, the guy who gets tired after standing for a few hours is supposed to, I don't know, drive a truck or something like that? That's unreasonable.

Yeah, so exactly. So in general, I think knowing how to look ahead, and then also to Nikki's point, sharing and talking to others and creating community is a really good way of taking care of yourself. I tell this to Rex: anything that happens to him happens to me. I may not have to be the one who is physically experiencing those symptoms, but I am there watching him go through it, and that's a different type of stress.

Dan Keller 24:30

From what you both said, I think social workers can be a good resource. As one of them described to me, "We're in the yellow pages of services in the healthcare field." They know where to go for what kind of problems, even if you don't know that it's a problem yet.

CJ Polkinghorne 24:46

Also, but I want to kind of advocate for support groups and things that aren't just Parkinson's related. Like, Rex and I had a conversation not too long ago where he was like, "Sometimes I just don't want to talk about having Parkinson's. I want to think about something else," and I was like, "That makes sense, you know." It's something that it's all you have to deal with every day. So, having activities, having hobbies, having support that isn't centered around the disease is also extremely important.

Dan Keller 25:16

You have a disease, you are not the disease, it's not your whole being, and shifting focus for thinking, I think, opens up some vistas for people. Yes, you can do certain things still that you've always enjoyed up to a point, so think of it as having something, not being something. I thank both of you for all the insights, this has been really good, and I think it'll be very helpful for people who are initially facing this, or even along the way. So, thanks.

Nikki Logan 25:50

We appreciate you very much. It's nice to be able to speak and help people. I think this is amazing, and I'm so thankful that you guys chose the two of us to be able to help you with this and help others.

CJ Polkinghorne 26:04

Absolutely, it was great hearing you, Nikki, again. The way and the love that you have. Thank you so much, Dan, for inviting us to have this conversation. When Nikki and I were able to speak and reconnect, there was so much understanding and camaraderie we were able to share, and one thing that is very clear to me about all of the caretakers that I know, and that is how much love there is, and how much dedication there is. So, I just think that if you have someone in your life who is a caretaker, understand how much love that is there that just can't be expressed enough. But then also, if you are a caretaker, understand that the work that you're doing and the way that you're advocating for them is love.

Dan Keller 27:00

We have a section on our website dedicated to providing resources for care partners. Just visit parkinson.org/caregiving. There you'll find books, fact sheets, and links to past podcasts. And following up on CJ and Nikki's thoughts on their own situations, you can read more personal stories and advice by scrolling all the way to the bottom to the Caregiver Corner section. Check out our recent blog post called Three Essential Resources for Three Different Kinds of Care Partners.

November is National Family Caregivers Month, a time to honor those who selflessly care for their loved ones. This year, we're highlighting the diverse experiences of caregivers within the Parkinson's disease community and beyond with our theme, Real Care Anywhere. Visit parkinson.org/caregiversmonth to learn more. Together, let's celebrate and support caregivers wherever they are and however they care.

As always, our PD information specialists can answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's; you can reach them at 1-800-4PD-INFO. If you'd like to leave feedback on this episode or to let us know what other topics you'd like us to cover, visit parkinson.org/feedback. Be sure to subscribe and rate us on Apple Podcasts, or wherever you get your podcasts. We want to thank this episode's podcast sponsor, Amneal, for supporting our mission at the Parkinson's Foundation. Our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Nikki is 40 years old and originally from New Jersey. She moved to Camden, ME at an early age of 3 with her amazing parents and older brother. They own a wine, cheese, candy, and flower shop. She grew up knowing more about high-end wine than any 15-year-old should know!   

She moved to Portland, ME about 20 years ago and went to cosmetology school and makeup artistry. She worked in the corporate world for over 14 years, then moved into a whole new career and has been working with a plastic surgeon for the past 3 years. She has been with her husband for 12 years and married for 5 this NYE. He is her absolute everything, and she couldn't imagine life without him in it every single day. 

CJ Polkinghorne is a Project Manager at USC and a graduate student pursuing his master’s in Museum Studies. Alongside his work as producer and co-host of the Bruh Meets World podcast, CJ is the founder of the James–Polkinghorne Queer Night Culture Collection. He and his husband, Rex, met in 2018 and married in 2023.

Since Rex’s Parkinson’s diagnosis, CJ has stepped into the role of caretaker /spouse, navigating the realities of young-onset Parkinson’s with compassion, advocacy, and humor. They live in the Hollywood Hills with their Am Staff, Logan.