Stronger together: Patient and caregiver collaboration in FA

Norman Simpson is a research scientist whose specialty is radiopharmaceuticals for imaging biological processes in people. He already sounds smarter than me. Having a child with FA — Donovan, born in 1996 — brings on a whole set of challenges, and Norman and his family have been on this road for over 20 years. He says the key to navigating life is to be adaptive and creative.

Victoria Carbone is the mom of two young children and a practicing attorney. Her husband, Nick, has FA and yet is both a caring father and a practicing attorney himself. Nick is now 37 years old and was diagnosed with FA at 10 years old. Victoria and Nick have been together for eight years and have been married for five. Panelists — Norman, Victoria, Kiersten, Kyle — thank you all so much for agreeing to join me tonight.

Kyle: It’s going to be fun.

Norman: Oh, yeah.

Sean: Here’s what’s in store today. We have three short segments planned. The first segment will cover communication between everybody involved — the patients, caregivers, your healthcare teams, your medical providers. Every which way you can imagine. The second will discuss challenges regarding treatment compliance, transitioning from pediatric care to adult care, and mental and emotional health. In the third segment, we will talk about caregivers advocating for patients and, of course, patients advocating for themselves. Finally, we’ll leave some time for the questions that were submitted in advance of this program or when folks registered. So without further ado, let’s break into our segments.

Segment number one has everything to do with communication. In our first segment, we’re going to discuss the fine line between the patient and the caregiver. And, of course, the lines that exist between both of those parties and the medical providers, everybody involved in the process.

Norman, I’d like to throw it to you first, if you don’t mind.

Norman: Sure.

Sean: As somebody that’s familiar with science and a dad of somebody with FA and your whole background, now that Donovan is an adult, all things included, what boundary between the caregiver and the patient did you or do you still find is most often crossed when communicating with a nurse or somebody on the healthcare team?

Norman: So basically like allowing Donovan to be able to create his own questions and working with doctors and what — not what I perceive that he wants, but actually trying to get to the root of what he would like to ask. That’s always been a kind of a complication because I, you know, as his dad, I think I know what he’s going to say. But then when I actually learned to be quiet and let him speak, I’m surprised by what he’s asking and what he wants to ask.

And I think those are some of the boundaries. And it goes into the independence, right? You know, after all these years of training him, he surprises me that he can actually do those questions. He’s like, “OK, I can ask intelligent questions.” And just like, wow.

Sean: Can you think back to the time when — I don’t know, preteen or, you know, those years where somebody starts to kind of become their own person — how did you encourage Donovan to come up with his own questions?

Norman: Basically on doing a visit. And we usually have a follow up, like we’re driving home from Dr. Lynch. And so we’re discussing things that were being said and it’s like, “Oh, I was surprised you didn’t say this. Oh, I was surprised you didn’t say that.” And then he’s like, “Oh darn, I wanted to say that.” And then so we kind of like replayed everything and what was going on with those interactions and thought, you know, “How could we do it better?”

And then I also get feedback from him. Like, “I really wanted to ask this, Dad, but you wouldn’t be quiet or Mom wouldn’t be quiet,” right? And it’s like, “Oh, shoot, next time I gotta remember to do that.”

You know, like a lot of times it’s like even in my relationship with with Dr. Lynch, we talk at a science level. And so at some point — Dave and I usually just came up with the clue — I leave the room. So him and his mom, like Donovan and Mom, can talk non-science with Dr. Lynch.

Sean: That’s clever. Just the word science causes anxiety for me. Like it’s overwhelming.

Victoria, I’d like to get your input in a similar question or basically the same question. I imagine that dynamics between husband and son are going to be quite different between wife and husband. So I’m wondering, was there a time — obviously, Nick was an adult before you guys get together, if I’m doing the math correctly in my head — but do you ever find yourself, competing, I guess, between, say, your communication style and his communication style when care providers are in the room?

Victoria: I definitely think so. And kind of what Norman was saying, what I have to remind myself is, you know, thinking about Nick’s independence and his autonomy.

Even when we’re communicating with providers in the same room, there’s almost this like — I see the eyes move to me first to ask me a question, and I’ll reflexively respond. And then I have to remind myself in the moment, “Let me take a step back. This is Nick’s care.” Yes, I’m here as a resource and a support for him, as my husband, as my spouse, someone I love and I care about very much. But that doesn’t mean that I’m able to necessarily step into his shoes and speak for him.

So I have to remind myself, because part of my — you spoke about communication styles. I like to be direct and think about, “OK, what are the steps that we need to take? One, two, three. What do I need to get done?” He’s a little different, a little more relaxed. So I need to, in those situations, kind of remind myself of that and let him let him take the lead.

Sean: I assume your style versus his might lead to frustrating moments every now and then. I’m curious: How have you communicated or maybe navigated frustrations about either different styles or perhaps even the boundaries that exist between you and him as husband and wife, and the boundaries that exist between his healthcare providers and your role as his wife? If that makes sense.

Victoria: No, that does make sense. And I think it’s, you know — like anything in a marriage or a serious relationship — open communication is key. And sometimes, yes, it can get frustrating. Like, we have a lot of things that we both need to juggle in our lives. Like, we have our professional hats, we have our careers, and we’re both parents. And then we’re also partners.

So trying to manage all of those things as well as health challenges and everything that goes along with that can, you know, it can be stressful at times, certainly. But keeping open communication and trying to have fun with one another. You know, again, like I was saying, you know, it’s like with any relationship: You want to keep the date nights, you want to keep communication open and fun so that you can better communicate when things do get to that stressful point.

Sean: Besides date nights, has there been any specific helpful tools that you might say have been valuable for you and Nick when it comes to voicing your frustrations around the topic of addressing healthcare?

Victoria: I know it’s something small and may seem silly, but like the calendar sometimes — this is like our shared calendar — can be, like, very helpful.

But also not so much. If we say, “Oh well, that was in the calendar. Why didn’t you see it? I put it in there, you know, a month ago or two weeks ago. And you didn’t ask me about it.” Or, “Oh, that reminder was in there.”

So that’s one of those, I guess, double-edged sword tools that can be helpful to promote, you know, positive and open communication. But if it’s not necessarily followed up on and kept up on, it can yield the opposite.

Sean: Norman, I know you mentioned, you know, sometimes leaving the doctor to drive home, you would get feedback from Donovan, let him talk on the car ride, and maybe make a mental note of, “Oh, should have asked this our next time.” Is there anything else specifically — a tool or a habit — you guys got into early on that you would find helpful for dealing with frustrations or, you know, communication barriers?

Norman: Well, we found his style. His style is that he downloads to his mother. He complains and everything else, but there’s no action items. But then if he escalates it to me, he’s looking for action items. And so we’ve learned this kind of thing. Like then my wife will come, “Oh, he’s complaining about this and this and this.” It’s like, “I don’t know anything about that. He hasn’t said anything. So, don’t engage me because I’m a fixer — I’m going to troubleshoot and I’m going to fix it.” So then I will.

We have dinner every night at the table. We have an open door, so we have neighbors and other caregivers and everybody else comes. And so this gives us another opportunity to discuss these kinds of issues.

Sean: Wonderful.

Norman: Yeah.

Sean: So, for dinner being open, where do you guys live?

Norman: So we live in Yonkers. You’re welcome to come on.

Sean: Thank you. I’ll be right there. Dinner after this, right?

All right. Kiersten and Kyle. I mean, like, Kiersten first, because I can tell by looking at you, Kiersten — you’re probably still 16 and a varsity cheerleader, right? I imagine maybe you’re a little closer in memory to that transition between high school and college or adulthood.

Kiersten: Yes.

Sean: Did you find, you know — can you talk about it from the patient’s perspective when it came to communication between you and your parents and or your parents and the caregivers and even the caregivers? Did you ever find yourself in frustrating or challenging circumstances?

Kiersten: Oh, for sure. So when I was first symptomatic, we struggled to find what worked for me. I am still at the point where I do not use a walking device, but I do need people to grab onto my arms, or I need to grab someone’s arm when I’m walking long distances.

So I was walking with my parents one time, and my mom, she was like, “Kiersten, you look uncoordinated. Can I grab on to you?” And I just — I did not like that approach. It put me in a bad mood. So we sat down later that night and had a conversation, and she was like, “I just love you. I don’t want you to fall. What can I do as a mom?” And I said, “Honestly, just grab my arm. I don’t really bring attention to it.” And from then on out, when we would be in the parking lot and I’d be a little stumbly, she would just grab onto my arm.

So just figuring out what worked for me to not really embarrass me was great.

But my sister — she said I could use her as an example, she has FA too — she uses a walker and she would get frustrated if someone just came up to her and tried to help her. So every FAer is different, but having those conversations with your caregiver really helped eliminate frustration.

Sean: Yeah. Ongoing conversations and communication certainly will be key. How do you find yourself today in high-stress situations — both in home life or clinical life? You know, if you’re at an appointment or those types of situations where Mom or somebody offends you, how do you effectively respond to help make sure your blood doesn’t boil too much or too low?

Kiersten: Yes. So I can get stressed out sometimes. We all do. But in clinical situations, my parents — we all love to talk in my family. And so, they would sometimes try to take over the doctor’s appointments. So we had a conversation that I wanted to speak first because I want to have a voice and I want to get my questions answered. My dad’s also an FA science talker, so I let him talk about FA science with the doctor after.

But in everyday life, I get stressed out. I don’t want to let people down. So, like, at work or when I was in school, if I would have to miss work for a doctor’s appointment, I would feel like I’m letting people down. Setting accommodations up with work and school just alleviated so much stress — having the proper accommodations and making sure everyone understood.

Also, in everyday life, I have shaky hands, so I got a little coffee cup that has a lid on it so I can independently bring my coffee to and from because I would get frustrated spilling it. So kind of just learning from situations and finding better strategies has really helped.

Sean: I love that. So practical too because we’ve all had those moments of frustration, right? And yes, it’s never easy dealing with it in the moment. I should say it’s not easy for me, but I think, like you said, preplanning and putting some things in motion certainly helps everybody in the mix.

Kyle, before we wrap up our communication segment (we all know you could talk forever, but we’d rather you not) I personally — a lot of people know, and for those who don’t, you and I have been friends for many years — I’ve seen you in some high-stress situations.

Kyle: Yeah. How did I perform in those?

Sean: It’s not a conversation for that or the time for that conversation.

I’m curious: Are there any tools or effective strategies you lean on when you feel yourself getting into a pressure point or high-stress situation, whether it’s at work, in the medical setting, or just in everyday life?

Kyle: I tend to sort of get quiet and try not to say something that I’m going to regret or go down a road that is not productive. So I feel like in high-stress situations, I try to come back inside myself and be like, “All right, reset. What am I going to do now?” So I think I use that sometimes in interactions with either caregivers, friends, family, or in the doctor’s office as well.

Sean: Sure. Yeah, that makes sense. Again, I think thinking about it and being intentional about what you say and how you approach it will probably be more beneficial for everybody involved.

Well, there’s so much more in the world of communication that we could talk about. We might be able to come back to that topic in a little bit, but for now, I would like to move on so we can get into our second segment, which is all things challenges.