A Physical Therapist Shares Her Perspective on Working with FA Patients

I have been working with my physical therapist, Kelli, for a year and a half. She is brilliant at what she does and has become a dear friend. I am so thankful to have her by my side as we fight Friedreich’s ataxia (FA) together.

She was kind enough to speak to me about physical therapy (PT) for an FA patient. Following are her responses to some of my questions:

What did you think when you learned you would be treating a patient with FA? What is the most challenging aspect of treating an FA patient?

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 giving difficult advice such as a recommendation to transition to a walker.

What is the most rewarding part of treating an FA patient?

The resilience, faith, and strength I witness every week. I have never treated a patient who lives with such a passion for life.

Join the Friedreich’s Ataxia News forums: an online community for people with FA and their caregivers.

How do you plan to combat a progressive disease with PT?

I discover what activities my patient loves, for example, volleyball, boxing, Pilates, etc., and adapt these exercises to allow her to continue to be active. I focus on maintaining and building strength and improving balance. Every stage of FA will bring different challenges, and a physical therapist can help ease the transition.

What muscle groups should those FA patients who can still walk focus on?

Core, quads, and glutes are the best areas to target to enable you to keep moving. A strong core helps you to maintain your balance when you walk because where your trunk goes your body follows.

When you rehab an injury or help someone recover from trauma, you have a starting point and an end goal. How do you change your approach with an open-ended patient, like someone with FA?

Unfortunately, many diseases that I treat are open-ended: Parkinson’s disease, FA, and cerebral palsy. In these situations, my goal for rehab is to maintain a good quality of life for as long as possible. I do that by finding activities my patient enjoys and incorporating them into rehab.

Why is walking beneficial for FA patients, despite it being tiring?

Walking uses every muscle in the lower body and core, which helps to maintain strength and improve balance.

What should wheelchair-dependent FA patients do to stay strong and healthy?

Continue to move your lower body as often as possible with exercises such as biking, squats on a total gym or Pilates machine, and even seated band exercises.

What advice can you give to FA patients transitioning to a walking aid or a wheelchair?

An assistive device does not define your life or freedom. While you may feel you are giving up by transitioning to a walker or wheelchair, the opposite is true. Using an assistive device prevents falls, improves mobility, and allows you to continue to live the life you want.

What have you learned from treating an FA patient?

From a therapy perspective, I have realized 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 meaning of resilience and faith.

A biblical passage comes to mind: 2 Corinthians 12: 8-10: “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.”

***

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.