Since receiving my diagnosis of Friedreich’s ataxia (FA) back in 2011, I have attended two series of physical therapy sessions. I was an outpatient at the local University of Pennsylvania hospital branch in 2014 and 2017.
Initially, when I went in 2014, I wanted to familiarize myself with ways to adapt to the daily activities of life related to balance and walking, because I learned that my FA would start to slowly progress. Once I had about 10 sessions under my belt, my therapist, Elena, provided me with an at-home exercise plan. The exercises focused on improving my balance and coordination. Following this plan taught me a lot about discipline and how I could be improving my health for the better.
A few years passed, and I decided to attend physical therapy again in 2017 because my disease was progressing toward the turning point that I was dreading the most: using a walking-assistance device regularly. I set realistic goals for myself that I needed medical expertise and guidance on.
I aimed to strengthen my core to improve my balance and make walking easier, learned techniques to decrease my fatigue levels, and inquired about using a walking-assistance device like a cane or rollator. A rollator turned out to be the best fit for my health needs. I was able to practice using one in public, which helped prepare me for using it regularly.
Both of these times, I learned that it is important to make physical therapy a constant aspect of my life. It can be hard to remain on a schedule of these exercises daily and weekly, but in doing so, I am keeping all my progress and small victories alive.
Following are four key areas that physical therapy continues to keep my health stable and slows down my FA progression:
1. Stretching: I like to start off my morning and end my evening with stretches. When I wake up, my legs already seem to have lost feeling and are restless. I stretch to get the blood flowing so my legs don’t feel stiff. At nighttime after a long day, I like to stretch my legs to wind down and relax my muscles. Doing a runner’s stretch really helps at both of these times.
2. Balance exercises: Standing and completing balance exercises can be difficult for me, but it’s rewarding because I can see the progress I’ve made. Standing with my feet together, or with one foot in front of the other, for intervals of one minute can increase my ability to keep a steady balance. It also benefits me to work my hip abductors with an elastic band, strengthening my hips and legs at the same time. This is another difficult, yet rewarding, exercise. I like to do both of these exercises two to three times a week.
3. Core stability: Working the core of one’s body is essential. Exercises such as bridging and planking will help build the muscles in the trunk of the body. I strive to do three sets of 10 bridges consecutively, and I try to plank for a minute at a time. Both of these help to build strength in my core, which ultimately helps with my balance and walking. I like to do both two to three times a week.
4. Fatigue management: During my recent physical therapy sessions, I learned that fatigue management addresses the mental or physical exhaustion that prevents someone from functioning normally. In a previous column, I describe four different ways that I adapted and modified my daily routine at work. These things help me rest and recover from an eight-hour workday. Fatigue is something I try to master every day.
These four physical therapy tactics give me the momentum and strength to stay active and maintain my drive and motivation to promote my own well-being. If I don’t keep participating in these daily and weekly activities, I will lose all the progress I have made. So, as fatigued and low in energy as I may be from my disease, I need to keep moving forward!
It is important to attend physical therapy, if possible, to try to slow down the progression of FA. If you don’t know where to start, addressing the topic with your neurologist or doctor is a great first step.
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.