Communication key for patients and caregivers in FA: Webinar
Participants stress importance of empathy, asking for help when needed
The relationship between Friedreich’s ataxia (FA) patients and their caregivers can be complex. To make it work for everyone involved, it’s important to practice open communication and empathy, and to ask for help whenever it’s needed.
Those are the key takeaways from a new webinar, “Stronger Together: Patient and Caregiver Collaboration in FA,” which was presented Nov. 6 by Friedreich’s Ataxia News and its parent company, Bionews.
The main topics of the webinar, aimed primarily at people with FA and those caring for them, were the challenges of navigating the patient-caregiver relationship — and strategies for success. The event was moderated by Sean Baumstark, who lives with FA and cohosts the podcast Two Disabled Dudes.
Panelists included Kyle Bryant and Kiersten Riggs, who live with FA, along with caregivers Victoria Carbone and Norman Simpson.
FA is a genetic disorder characterized by symptoms such as difficulty with coordination and balance. The disease usually starts to cause noticeable challenges when patients are children or teens, often requiring them to have varying degrees of care. As such, for most FA patients, their first caregivers are their parents. Later, spouses may take on the job.
According to Carbone, who is caregiver to her husband Nick, who has FA, “the key is open communication with one another.”
For parents, education and preparation are crucial
Having a child who is diagnosed with a rare disorder is a life-altering experience, and it can be hard to know what to do or say, many participants agreed.
Bryant, an FA patient and part of the ambassador leadership team at the Friedreich’s Ataxia Research Alliance (FARA), advises that parents of kids with FA should first and foremost learn all they can about the disease — but then give their children space to ask questions at their own pace.
“I think that a parent’s role is to be as informed as possible, to be ready for that situation when your child is ready to talk about it,” said Bryant, the other cohost of “Two Disabled Dudes.”
He reflected that this was the approach his own parents took when he was a young person growing up with FA: “They were going to support group meetings, and they were reading up as much as possible until I was ready. And when I was ready … they either had an answer or they were like, ‘I don’t know, but … I think I know where we can try and find out.’”
Simpson, father of an adult son with FA, suggested that parents can also try to make things easier for their children by having tools like mobility aids prepped in advance, so that they are an option if the child ever feels they need such support.
“I kind of try to think ahead,” Simpson said. “I got the wheelchair before he needed the wheelchair. And it sat over in the corner, didn’t get used. And then one day he came home from school and he said, ‘I am so tired of falling. Can I use the wheelchair?’ … 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.”
Making space for individual preferences
It’s important to remember that all people with FA may have different preferences for how they want to be supported. Thus, having honest conversations about what works and what doesn’t can help everyone involved to succeed.
Riggs is an FA patient, and her sister also has the genetic disease. She reflected that the two of them sometimes react very differently to the same kind of support. For example, Riggs said that, when she would stumble while walking as a child, she preferred for her mother to just reach out and steady her without asking, because she found it embarrassing to talk about her coordination difficulties in public. But her sister had the opposite reaction, finding it frustrating when others tried to help without asking first. Openly discussing these different preferences can help everyone feel supported in the way that works for them.
“Every FAer is different, but just having the conversations with your caregiver really helped eliminate frustration,” Riggs said.
One of the trickiest challenges of being a parent to someone with FA, especially as children grow into older teens and young adults, is finding a way to balance advocating for these individuals with making room for patients to express their own needs and learn to advocate for themselves independently. Keeping an open line of communication is key, and it’s especially important for parents to be deliberate about making space for their children to voice their own thoughts and desires, several participants noted.
“As his dad, I think I know what he’s gonna say,” Simpson said. “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.”
Keep focus on patients when talking to doctors
Adhering to boundaries can be an especially difficult challenge when talking with healthcare professionals. Caregivers need to be careful not to talk over patients during conversations with doctors — which can be especially challenging because doctors sometimes act ableist and ignore patients in favor of talking to caregivers. When this happens, it’s important to be deliberate about bringing the focus back to the patient, according to Carbone, who accompanies husband Nick to medical appointments.
“Even when we’re communicating with providers in the same room, … this [can occur],” Carbone said. “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.”
Carbone said that sometimes she’ll try to summarize what her husband was saying as a way to redirect doctors to talk to him. “He knows himself and what he needs for his care the best. Even more than I do, even though I’m around him quite a lot,” she said.
Riggs agreed that it can be frustrating when parents or caregivers talk over patients during healthcare discussions. “I want to have a voice and I want to get my questions answered,” she said.
Simpson said he and his son have found it helpful to role-play conversations with doctors in advance so that his son has all his questions prepared and feels comfortable stating his own desires.
Asking for help and expressing gratitude for emotional well-being
Of course, navigating practical aspects of FA, such as mobility issues and talks with doctors, is only one small piece of the caregiving puzzle. It’s just as important to take care of mental health — for both the patient and the caregiver. This will look different for each individual, so it helps for everyone to be clear about what coping mechanisms do or don’t work for them.
“Maybe I’m going through a bad FA day. My close friends and family know that sometimes I don’t want to talk about things, but they know that I love car rides. So we will get in the car and we will jam out and we will go get ice cream,” Riggs said. “And then if I’m doing a little better, then we’ll talk about it then.”
For Riggs, “people knowing my coping mechanisms has really helped me emotionally.”
When navigating life with FA, perhaps the most important aspect of managing emotional well-being is knowing when and how to ask for help. Also key is building a network of people to lean on for support.
According to Bryant, “setting up that network … has been emotionally supportive for me. Having a network that I know is there whenever I need it.”
That “list in my head,” Bryant says, is “10 people I could call right now and talk to about whatever’s going on. And I could call a neighbor, or one of six neighbors, and know that they would come over at the drop of a hat and help me.”
Asking for help is just as important for caregivers as it is for patients, the participants agreed. Carbone said that, when she and her husband first started their relationship, she had a tendency to take on more than she could handle. But now, with kids to manage and each of them having a career, she’s learned the value of leaning on others for support and being open with her husband about when she needs a break.
The key, Carbone says, is communication.
“If you’re reaching that breaking point, you need to ask for help,” she said. “I know that’s a little bit of a cliche, but it’s really important to make sure that you take care of yourself as much as you can, if you’re going to be caring for others.”
For both the patient and caregiver, it’s vital to be mindful of the other’s experiences. Living with FA can be difficult for patients and their caregivers, as well as for other loved ones. But practicing empathy and gratitude as much as possible can help make everyone feel cared for.
Says Baumstark: “You get to a point [as a person with FA] where you expect somebody in the family to do your laundry, or you expect them to do X, Y, or Z. And the reality of it is, they don’t have to. So being intentional about that gratitude and expressing it … goes a long way for yourself and everybody around you.”
The webinar was supported by Biogen, which markets Skyclarys (omaveloxolone). Video highlights from the live event are available on-demand on the webinar page.
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