I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
I have been working with my physical therapist, Kelli, for a year and a half now. (http://www.lakewaysportspt.com/) She is not only brilliant at what she does, but she has become a dear friend. I am so thankful to have her by my side as we fight Friedreich’s Ataxia.
She was kind enough to do an “interview” on physical therapy for an FA patient.
Q: What did you think when you first learned you would be treating a patient with FA? What is the most challenging part of treating an FA patient?
A: Honestly, I had never heard of FA and had to do a lot of research to educate myself on the condition and how I could help. The most challenging part of treating an FA patient is having to give a difficult recommendation such as transitioning to a walker. I know the advice I give is sometimes hard to swallow.
Q: What is the most rewarding part of treating an FA patient?
A: The most rewarding part of treating an FA patient is the resilience, faith, and strength I get to witness every week. I have never treated a patient that lives with more passion for life.
Q: How do you plan to combat a progressive disease with PT?
A: Physical therapy with FA is different yet looks similar to many other conditions I treat. The most important thing is to find things my patient loves (volleyball, boxing, pilates, etc.) and find ways I can adapt and allow them to continue to be active. The general focus is to maintain and build strength and balance. Every stage of FA will bring different questions and a physical therapist should be able to help the transition seem not as difficult.
Q: What muscle groups are most important for still-walking FA patients to focus on?
A: Core, quads and gluts are the best muscles to target to keep moving longer. Core is especially important because it will help keep you balanced as you walk (where your trunk goes your body will follow)
Q: When you rehab an injury or help someone recover from trauma, you have a starting point and an end goal. How have you had to change your approach with an open-ended patient, like someone with FA?
A: Unfortunately, there are many diseases I treat that are open ended such as Parkinson’s, FA, and Cerebral Palsy. In these situations, my goal for rehab is to keep the quality of life as high as possible for as long as possible. The most important part is finding activities my patient enjoys and incorporating them into rehab.
Q: Why is it important to keep walking as long as possible, even though it is really hard and tiring for FA patients?
A: Walking incorporates every muscle in the lower body and core which helps maintain strength and allows you to continue to work on your balance on a daily basis.
Q: What should wheel-chair dependent FA patients focus on to stay strong and healthy?
A: Continue to move your lower body as often as possible. This could include biking, squats on a total gym/Pilates machine, or even seated band exercises.
Q: What advice can you give to FA patients transitioning to a walking aid or to a wheelchair?
A: An assistive device does not define your life or your freedom. Transitioning to a walker or wheelchair may feel like you are giving in or have stopped fighting, however, it is the opposite. It will help to prevent falls, improve your mobility, and allow you to continue to live the life you want.
Q: What have you learned from treating an FA patient?
A: From a therapy perspective, I have seen that no dream is too big. Never let a diagnosis stop you from becoming the person you want to be. From a personal perspective, treating an FA patient has changed my life. I have witnessed the true definition of resilience and faith. 2 Corinthians 12: 8-10 often comes to mind: “Three times I pleaded with the Lord to take it away from me. But He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”