Beyond the Friedreich's Ataxia Basics

It’s important to be able to focus on who we are and what we are able to do despite FA, because when we are diagnosed with FA, or at least me when I was diagnosed with FA, I was scared to lose some of my identity to that disease. So it took a while for me to figure out that I was who I was and my strengths and me as a person was not affected by this disorder. It seemed to be affecting a lot of things about the way I live my life, but it was important for me to separate who I was from what FA was doing to my body.

Esther: So how did you do that?

Matt: I think that’s super important. I think friendships, having social — people to turn to is pivotal. It’s easy for me to stay locked inside my mind and I’m pretty native to myself. I think everybody is. But it’s important not to live with that being the only voice — to have someone, if it’s a family member, if it’s a close friend, someone to turn to and talk to things about, maybe they won’t be as hard on you as you would be on yourself. So I think that it’s so important to maintain those kind of relationships in your life.

Esther: Yeah. Amen. I think, you know, just from our personal experience, you know, with Andrew and I as patient and care partner, community and type of relationships really get you through some of the bumps along the way, for sure. Kendall, I’d like to ask you the same question. What are some of the things that you’re doing now on a day-to-day basis? I mean, we know you’re chasing kids around. You have a husband. You know, you got a lot going on beyond the treatment you’re taking. So how do you take care of yourself physically and mentally and and get through that routine?

Kendall: Yeah, well, FA changed a lot for me, but it didn’t change any of what I enjoy doing and what I like filling my time with. It definitely changed how those things look and how I need to prioritize things, but fortunately, the things that I’ve always loved and still love, I can still do. My time isn’t necessarily my own, but I think that’s true for every parent, especially parents of littles. I have a 9-year-old son and a 6-year-old daughter, and they do just about every activity under the sun. And just being a part of their lives is honestly what I love doing. And it lights me up. It’s what I enjoy filling my time with.

And, I mean, there are some days when my FA just has me feeling incredibly blue. And on those days I find a new series to binge on Netflix and stay in bed with a jar of Nutella and just hope that tomorrow will be better. And I think that the most important way that I can mentally and physically face this constant, relentless, everyday battle of FA is my village. My husband is just unfailingly optimistic, and my kids are compassionate and full of joy. And my parents, who live one street over from us, are just an invaluable asset and help. And they’re my co-parents.

On those days when I am struggling, and I think that just doing regular kind of mentality checks, of just being honest about what you’re feeling and why you’re feeling that and allowing yourself the room and the grace to understand those feelings can help you find a way forward.

Andrew: Great advice, Kendall. I’m going to come back to you in a second about family relations, but I want to ask Dr. Lynch. Dr. Lynch, you have many, many patients. So what do you want to say to the hundreds of care partners here of what you feel they can do on a day-to-day basis to maintain or improve their health and wellness?

Dr. Lynch: So besides the obvious medical care, exercise, staying in touch with your general health as well as your mental health; finding things that you do. I do have to remind people that depression, a true psychiatric illness, is a part of many neurodegenerative disorders, and it’s OK to admit it and talk to your doctor about medical intervention. That’s the first step. It may or may not require medical intervention, depending on how severe it is, but don’t forget about that. There are things. That’s one of the things if your sleep is disordered, if you’re eating unusually because of depression, those do justify intervention.

The other thing I would say to everyone is, you know, as you go around asking the questions, don’t think about what you can’t do and answer every question “no.” Think about what you can do and what you can do to make things happen as close to the way you wanted it to as possible. If there are any new parents or new patients listening, the first thing I always tell everyone is what all my patients do for a living — accountants, nurses, social workers, teachers — I know four individuals who are graduate students in science departments around the country — I’m looking for one who wants to become a neurologist because I’ll be retiring at some point, and I need someone to take over.

Esther: You’re going to get phone calls.

Dr. Lynch: Yeah, so think about those things that you can do and figure out how to make them come as close to possible as you can.

Andrew: So some of it is planning, like logistical. Kendall, you told me that you and your husband wanted to find a one-story house because they knew that’s what you needed to keep up with the kids, to get around, to be mobile etc. And it took you months, but you found it, right? And so that was part of you and planning logistical. I want to ask you, Kendall, one other thing. We have family members on this program. You’ve told me previously that when you were diagnosed, your parents had a lot of guilt. How did you work that out?

Kendall: Well, I just constantly just involve them in everything, and I’m honest with them, and they’re honest with me and allowing them to be a part of my journey and realizing that, although far is happening to me physically, personally, it’s happening to my whole family, and just allowing all of us the space and the grace to process all that that means has been vital and helpful. And it just boils down to like, yeah, I have FA, and yes, it is technically genetic, but I know that you didn’t pick FA for me, so let’s just find a way forward because we can’t go back. We can’t undo my DNA, so let’s just process what we have and go forward.

Andrew: Well, that’s very helpful.

Esther: I want to ask Matt something. Matt, you have a more independent lifestyle right now than Kendall does. You don’t have the kids running around. You keep yourself busy. It sounds like from your description of how you live your life that you have care partners. There are people in your circle who support you. And what are the things that are most helpful to you in that, in your community?

Matt: Absolutely. I think it’s essential to recognize that caregivers, parents, friends are paid caregivers. They’re on your team. They’re not babysitters for feeling sorry for the person who can’t do anything on their own. There are people there to help you be as independent as possible.
So with that in mind, I want to thank every caregiver out there. Because of you, you help people like me and us prosper, so I’m really thankful for that, really thankful for you. The idea that we’re all on the same page is extremely strengthening, both for the caregiver and for us, so that we can see ourselves not as the victim, but as someone who yeah, it’s more challenging for us to be independent, but let’s find a way to make that happen.

Andrew: Matt, you and your sister, one of your sisters, have FA. Is there something you’d like to comment on that your parents have done to help you or help you both that are tips for parents who may be watching now?

Matt: Sure. One thing that my parents did for me that I’m so grateful for, I’m continuously grateful for, is that even amidst the life of having Friedreich’s, seeing abilities dwindle and get worse and worse, they reminded me that that wasn’t the entirety of who I was, that I was still able to do things that exceeded for things like schoolwork, things like reading, things like writing.

So I’m really grateful for that and for showing me that I was not simply FA; that was not my identity. I was Matt, I was Matt, who is a guy who struggles with FA, who feels over-encumbered by FA. But overall, that is not who I am. And I want to encourage everybody with FA that that is not who you are. And yeah, it’s a challenge that we have to deal with, but ultimately we can rise above it.

Andrew: That’s great.

Esther: Kendall, do you have any other things to add here, or Dr. Lynch, just about living with FA? Any hints, tips?

Kendall: I mean, my kind of strategy for managing FA on a day-to-day basis is prevention and accepting help. I use a walker and sometimes a wheelchair, sometimes a mobility scooter, all to hopefully prevent catastrophic falls. And I try to prevent the onslaught of symptoms that exaggerate with fatigue by prioritizing sleep. And I exercise every day; I eat healthy: I don’t smoke or consume alcohol; and follow up with my regular team of healthcare professionals regularly, and I think that that helps me physically combat FA to the best of my ability.

And then just being honest with your caregivers, your village, your friends, your family when you are struggling, reaching out for advice or help. Like Dr. Lynch said, depression is a very real part of what we’ve been handed as patients, and there’s just there’s no shame in getting help and seeking help and accepting help, especially when you need it.

Andrew: I have one image, Kendall, I just want to ask your comment on with your children. So they have sports and other things, and maybe you try to keep up with that. But I imagine the beginning of the school year when the parents go to the school, there are going to be people who know you, but there are going to be people who don’t. And they see you in a wheelchair or with your walker, and they kind of look at you crossways, you know? And I’m sure everybody with FA has faced that. How do you get past that and say it’s kind of their problem and not yours?

Kendall: Oh man, what a thoughtful but loaded question. Fortunately, my kids go to a pretty small private school, so most of the parents know me by now. My son’s in third grade, and he’s been there since kinder. And I’m really honest — I have a big red ataxia CureFA sticker on my walker. I’m very upfront with what I’m facing. I send my kids, teachers, and classmates an email at the beginning of every year, like, this is why I use a walker. I’m an open book; ask me anything whenever you have questions.

And I mean, sure, I’m sure, I get lots of looks and quizzical glances, and I’ve had lots of my friends, or my kids’ friends, that ask, why do you use that? Or they look in my walker thinking it’s a stroller trying to find where I’ve hidden the baby. So, I mean, there’s definitely been some some funny and memorable moments, but I just have to constantly remind myself that these tiny humans and their parents aren’t used to seeing a 35-year — or 36-year-old woman using a walker or a wheelchair. And so I just answer the questions as they come up. And then, unless I’m asked directly about it, I just kind of ignore it if they are.

Andrew: Well, everything applies to parents of children in school as well. Why is that kid in a wheelchair? How do I keep the teacher informed?

Esther: Anybody who is dealing with with an illness that is visible to other people, they’re going to be questions and what it sounds like you’ve done, Kendall, and just from knowing Matt for a while, I’m sure he does, you’ve turned what could be a negative and something very confusing into something that you’ve accepted for yourself, and you move on with your life and make it positive going forward. So I appreciate you sharing that insight.