TABLE 2.

Advice for Physical Therapists Working with Families with Children Diagnosed with FA

Theme	Sample Quotes
Become the Expert	“I felt like I was the expert. No one knows as much. It felt good to go to someone who could tell me.” “It is very encouraging to have someone give us advice about things. It feels good to go to someone who can tell me things as opposed to the other way around. We really feel like we are on our own… Otherwise, you don’t know who to trust.”
Be an Educator, an Advocate, and a Resource	“They should be able to instruct for more things at home so that we know what to do with him when he can’t go anymore. Pick things that are easy to do that I can do with him or things he normally would like to do.” “Start it earlier; don’t wait… I would say the earlier the better. Waiting is doing the child a disservice. You can’t get rid of it but you can keep them healthier longer.” “Network and support groups are helpful. Therapists should try and know about these… to be outside the box because you can’t guarantee the therapist will be there all the time.”
Encourage activity	“[Emphasize] walking with a walker, those kinds of things. Because last summer we went to ___ to visit my family and there he was sitting most of the day. He was not walking at all. That was a setback for him.” “Encourage people to use the function they have because the more you do it… the people with FA… it’s true that you use it or lose it. Encourage them to stay healthy and active.” “If you can keep the kid active and involved. I have two other kids who are really pistols. They drive him more than anyone else. One thing we learned is when he works out all the time, his coordination improved. He has more control basically. Don’t give up, they can get better.”
Know your patient and be realistic	“Don’t push too hard. You need to keep a better eye on how she is doing, on how it affects them. Don’t just take the child’s word for it. Watch for signs that she is too tired… Don’t push them past the point of being too tired.” “Short things that they can finish and feel good about. Something they can accomplish.” “My experience has been that PTs tend to work from a standpoint of, here’s where you are, here’s how we can improve. I think it [should be] here’s where we are, here’s where we want to stay. Well she may be doing fine right now, but I want to make sure she stays fine.” “[The PT should] spend some time with them before starting to work with them in a non-rehab setting just doing what the kid wanted to do and watch them. When they are under the microscope they will try harder to be what they think you want them to be. When they are just being themselves you will see what type of gait they have and other things.”
Encourage socialization and outside activities	“We also do horseback riding… That helps to keep the legs from scissoring. They are not scissoring yet, I’m just hoping to avoid it.” “She also quite likes yoga. She needs to go with other children her age to make it fun.”
Use Effective Interventions	“Hydrotherapy is excellent, too. There’s no laws of balance; they’re not going to fall. They have freedom in the water that they don’t have on land. And it’s important for them to have that sensation… Even once a week was better than nothing.” “It’s rather the strengthening and stretching, to keep the muscles conditioned as you can… The weight training is really good. That’s something she can do, like try to do 5 reps or 10… things that challenge her are interesting to her, instead of just sitting there and being stretched. She has a little more involvement in it.” “And I think the strength and the toning, I think we try to stress with him that he needs to stay strong and not let his muscles deteriorate because he’s going to need them. We believe with all of our hearts that the answer to this is coming. We try to stress to him that he needs to be ready for that day. And so we think that stretching, toning, and even maybe a little bit of weight training is very beneficial.”