Stronger together: Patient and caregiver collaboration in FA

And so it’s kind of one of these things where you have to do a little roleplaying ahead of time. Like, “This is what the doctors are going to say, and they’re going to ask, and they need you to actually answer it. I can’t tell them, ‘Donovan, you feel great,’ because I’m not you. I’m not in your body. I can’t tell them that your shoulder hurts or you have a sore on your leg. You know, those are things that you need to talk about.”

When he got his AFOs, it was because Dr. Lynch was coming with a cure really soon, and he wanted to walk barefoot in the grass again. That was something he articulated as part of his role and what he wanted to do. So it’s OK to have these dreams and creative ways of thinking about what you want to do with your medical treatment, of course.

Sean: Kiersten, can you — similar question: Do you remember your parents doing anything to help you find your own voice? Or do you remember how you got that kind of courage to speak up for yourself?

Kiersten: Honestly, my parents talk, and I do, too. So they didn’t really influence much.

But they did influence research because there are so many clinical trials. It sounds scary to do experimental things so I asked a ton of questions, and my parents encouraged me to ask those questions. They helped me come up with them. My dad’s an FA scientist. He explains a lot of things to me in simpler terms.

Did I answer the question?

Sean: Yeah, absolutely, thank you. It does open up another question, though, for you.

Kiersten: OK.

Sean: You know, I said early on in the introduction that you were diagnosed at the age of 16. I don’t know exactly how that unfolded for you, but think about the other teenagers in the world whose parents know about FA. How would you encourage a family to share that information and the progression without overwhelming the child?

Kiersten: Yes. So I have actually had these conversations with FAers who were teenagers. It looks very scary on the internet. It’s a lot of information, but I reassure everyone that everyone has FA at their own pace. There are treatments and clinical trials coming out. We’re right around the corner from beating this, and it does not stop your life at all. You can have accommodations to live such a fulfilling and fun life. Yeah, that’s kind of my answer.

Sean: Kyle, what do you say to families that are coming upon that bridge of “What do I tell them? How much do I tell them? And how do I make it known?”

Kyle: Yeah, my advice, especially for a parent, is to find out as much as possible. That is your job. I’m so grateful that my parents didn’t force anything on me. They were going to support group meetings and they were reading up as much as possible until I was ready. When I was ready, they had some answers. They didn’t have to say, “I have no idea.” They either had an answer or said, “I don’t know, but I think I know where we can try to find out.”

I think a parent’s role is to be as informed as possible and to be ready for that situation when your child is ready to talk about it.

Sean: Being prepared, I think, speaks to that — getting your ducks in order, getting things in place. Victoria, the next question, I think you’d be the perfect one to answer. Somebody asked, “How does a caregiver separate being a caregiver and also being the spouse?”

Victoria: I think it’s about — really, frankly, I don’t know if you can. I mean, you can and you can’t. Because in any relationship, the one that I have with Nick or any other, there is an aspect of caring and thinking about the other person, what their needs are, and what they need in a given moment. Are some of those needs that Nick has maybe different from others? Yes. But I think they kind of go hand in hand.

What I mentioned earlier — the aspect of connection and talking with one another, connecting with one another, and having that space where you are just two people who are married and who love each other and want to be together—  is important to hang on to when all of the other more stressful aspects of caregiving present themselves.

Sean: I guess Norman, kind of similarly, is there a definitive line between being a caregiver and being the father, or do they blend so much together regularly?

Norman: You don’t have to — I mean, you’re right. They blend together. But I think what we’re looking for as our answer is allowing other people to be caregivers, because nobody is as good as I am for Donovan. Nobody. Yet, who do I bring in that can do that?

So I have to then separate myself as the father from the caregiver and give that caregivership to someone else, to say, “You’re in charge. I’m going to work. You’re here. You’ve got to get him up, get him dressed, get him breakfast, get him to his appointments, and do stuff.” Then, I come home, and it’s all taken care of, and I can be a dad.

It’s like I’m just the dad now. And that’s the separation — that’s really the hard part to look after because he’s dependent on people.

Sean: Sure yeah.

Norman, while I’ve got your attention and your mic’s unmuted, the next question is probably perfect for you as well. I’m just going to read it, as it’s kind of a long one. The person asked, “As a caregiver to an adult son, I need advice on how not to speak for him, especially when the information he’s giving to a doctor is being minimized or perhaps not clearly stated. What is the balance between helping him get the best care while also leaving his dignity intact?”

Norman: That’s a tough question. That’s really tough because that’s the heart of it. You hear misinformation — that’s a big thing now, right? I typically won’t address the doctor but will address Donovan directly: “Son, is that what you’re really saying? That’s not what FA research has shown. Is that what you really want to tell your doctor?”

The doctor is in the room, but then it gives him a chance to think through what he said. I might say, “Maybe you can rephrase it because maybe you’re thinking the right thing, but you didn’t say it correctly.”

Sean: In the moment, maybe there’s stage fright, especially when you’re in that little room, and the doctor in front of you is wearing the white coat. There’s the perception that they know everything, and in a sense, they are a higher being. I imagine those moments are not easy for anybody. I like the approach of encouraging them to rephrase it. That might be helpful in the moment.

Norman: Yeah, it actually helps a lot. We’ve been in that situation more than not a lot of times because it’s just the way sometimes you phrase something. With your FA voice, it puts a little more of a challenge to it and if he’s struggling, I will rephrase it: “Is this what you want to say?” And, of course, the doctor is on a time schedule. They want to get in, they want to get out and do things. I got it.

Sean: Thank you, Norman.

I’m going to throw out another question. This one I’ve been trying to rephrase it in my head, but I want to do the question asker justice. I think I know what ultimately is being asked, so I’m going to ask Kiersten and Kyle to try to follow my train of thought.

This person wrote “When a family member says things like, ‘You don’t know how I feel. Nobody does.’ — I’m assuming that is the patient, right? — or when they feel maybe hopeless about a medication that is really only a hairline treatment, not a cure, how would a family member or parent or somebody encourage them to try new things without being overbearing or feeling like they know better than the patient does?”

Kyle, I’m going to throw that one to you.

Norman: Kyle’s thinking, he’s thinking.

Kyle: Yeah, Norm saw the little mouse running in my head. That’s a really tough one, man.

Sean: It’s a dilemma for everybody, right? For anybody and everybody. I’ve joked — many of us have — you always meet that person that tries to encourage you to drink more green juice, or maybe you just need to exercise more. Sure, there’s some valid thought there, but how does someone balance addressing that dilemma of wanting to be encouraging to their family member but also exploring new things that might be beneficial in one or a thousand different ways, not always curative in mind?

Kyle: I think it’s probably fundamental, like discussing and exploring the whole issue, whatever the issue is, you know, soup to nuts and digesting it together. And having somebody else to think through all the pros and cons of whatever treatment or an approach or whatever, and letting that person — or your sibling, your child — know that they’re not alone. And that they have someone to think through this with. I think that’s what I appreciate about those situations.

Norman: I would add time. It can’t be something overnight. Sometimes, it takes time for people to realize things. And it’s not maybe today, but, you know, two weeks from now or three weeks from now, it’s like, “Oh, yeah, OK, let me try that green drink.”

Sean: Yeah. Good point. I appreciate both of them because it’s a dilemma we all face, right? But we also all want to be encouraging for our loved ones. And I think even as patients, we — well at least in my case, I shouldn’t speak for all patients — but I’m willing to try a new thing or two every now and then.

So this one, I’ve got another question here before we move on to our next piece. You know, we’ve got just seven or eight minutes left, but somebody asked, “What are some suggestions for making a transition to a wheelchair easier for somebody who’s only, you know, at the age between 10 and 13?” So a child coming into that, you know, the teenage years. How do you — what advice or suggestions do you have that might help somebody navigate that situation?

Norman, I don’t know if you’ve experienced that or how it was, but maybe I’ll throw it to you first.

Norman: We did. We had to go through that. And, you know, I kind of try to think ahead. I put grab bars up.

“I don’t need grab bars, Dad.”

“Too bad, that’s for me. I don’t want you to use them ever. They’re — they’re mine. I’m getting old. I need grab bars.”

And so I put things in. I got the wheelchair before he needed the wheelchair. And it sat over in the corner and didn’t get used. Then, one day, he came home from school, and he said, “I am so tired of falling. Can I use the wheelchair?” It’s like, “Well, OK.” Of course, it broke my heart to even buy the wheelchair, but having that there as a tool when he was ready for it was very important.

Sean: I think many of us probably know that the process to get a wheelchair, unless you’re paying cash, can be a long one.

Norman: Correct.

Sean: So I appreciate the foresight of pulling the trigger on that one.

Kyle, same question for you: When it comes to working with families of young children, what advice or suggestions do you have for helping navigate that major transition for a child?

Kyle: I think, you know, reassuring a child that they have the resources to make the choices that are right for them.

Like, “Hey, I found this website. Here’s a bunch of wheelchairs.” Or, “I heard this is a good brand. You should look at this.” Or, “Here’s somebody to talk to that might know more.”

Just knowing that they have the resources to be able to, and, “Hey, you know what? It’s going to cost a lot. It’s going to take a lot of time, but we’re going to make it happen. We’re going to figure this one out together.”

And just reassuring, I think, that they have what they need when the time comes.

Sean: I love that. Thank you. We do have just a couple of quick-hitting questions that are kind of rapid fire if you will. We’ll begin to wrap it up with this.

So, Kiersten, I’m gonna throw it out to you: What is one unique tip that you would pass on to other FA families for managing life with FA on a daily basis?

Kiersten: Well, one thing that has really helped my family is getting involved in the FA community. It is so nice to pick up the phone and call another FAer and talk to them about something you’re going through, and they immediately get it. It can be your first time talking to them, and they totally understand it. Same with my parents. They have loved talking to other FA parents because we just all understand each other.

Sean: I love that, thank you.

Victoria, what is one unique tip that you would pass on to other FA spouses or families?

Victoria: I would say get yourselves out of your comfort zone. One thing that we like to do is travel. And the way that we can do that is by harnessing various social media accounts. One I can think of is “Wheel the World” and various other things. Research places you want to go, look at accessibility, look at reviews. If we know someone who’s gone there, get tips from them. Again, just, you know, try to push yourself out of your comfort zone and see new things, experience new things.

Sean: Go out there and do it.

Victoria: Don’t let your limitations stop you.

Sean: I love that. That’s great advice. Don’t let limitations stop you.

Norman, what is one unique tip that you would pass on to other families?

Norman: In thinking through that question, there’s something monumental in my life, a diagram that hopefully they can show you real quick.

OK, so it’s the 6 or the 9 as you’re looking at the diagram. I see a 6; Sean sees a 9. We can argue all day about who’s right and who’s wrong, but in reality, we’re both right. If you get a bigger picture, you can see, “Oh, I have a better perspective of this 6 — that’s really a 9, that’s really a 6.”

And I think that’s part of communication. People have their concepts; they see things the way they see them. But if you can just step back for two seconds and get a bigger picture of what each one is seeing, sometimes you find common ground and it helps with the communication. It’s even with my son, with my wife, with my coworkers at work. It’s just constantly a battle to step out of my head and look at the bigger picture.

Sean: Our perspectives can always be a little bit different.

All right, last one. We’re down to just a couple of minutes. So, Kyle, I’m going to throw it to you. I do want you guys to be a little bit playful here. But Kyle, what is one thing FA has taught you or surprised you about yourself?

Kyle: FA has taught me that there’s not one way to do things.

You know, I had this vision, and we all do — I still do — this vision of the future, and I had to erase that because that’s not happening. It’s going to be freaking awesome. But it’s not going to be anything like what I envisioned.

And I think that’s what FA has taught me, is to create an awesome vision or maybe an awesome life one day at a time that might not be exactly how I envisioned it at first to begin with.

Sean: Yeah, be open to change.

Kiersten, what about you? What is one thing FA has taught you or surprised you about yourself?

Kiersten: So, FA has taught me a big life lesson, which is to be understanding of everyone’s situation. You never know what someone’s going through or what someone’s family is going through. So always be kind. When I’m having a bad day, and someone is just really nice to me, it makes my whole day better.

So when someone is taking more time for something, just be nice and be understanding because you never know why they’re taking more time with something.

Sean: Good point.

Victoria, the last word goes to you before some concluding statements: What is one thing that FA has taught you or shown you about yourself?

Victoria: Probably to be less of a control freak and to understand that there are things in life that you can’t control. You just have to meet them where they’re at, keep your head up, and move forward. That’s it.

Sean: Thank you. And, of course, thank you to all of our panelists for joining me tonight and being a part of the conversation.