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.
One of the harsh realities of life with Friedreich’s ataxia is falling. That was my first major symptom and a red flag. I knew something was wrong because I was falling more than I did previously, and it happened more frequently than the average person my age.
I am participating in a Phase 2 clinical trial of the investigational therapy RTA 408 (omaveloxolone), and one of the study’s requirements is for me to keep a journal to log my falls since starting the trial. Every day, I document the time I took the therapy and whether I had any falls that day. If I did, I detail where and how the fall happened, and whether I sustained any injuries.
I vividly remember all of my falls. Documenting them in devastating and heartbreaking detail on official clinical trial paperwork makes them a reality in my life that I can’t ignore. It shows that I have FA, and that the effects on my body are real. Writing it down quantifies and validates the significant effects FA has on my everyday life.
This daily journaling process also helps me to see the good things that are happening. I am thankful that I circle “no” more than I circle “yes” when filling out the column that asks, “Did you experience any falls this day?”
I recently submitted the journal that I’ve been keeping since mid-September. Reviewing it in its entirety was a surreal experience. It’s easy to be hard on myself and become frustrated with my progression on the days when I fall. Yet, my journal indicated that the frequency of my falls has decreased. This helps to put things in perspective and give me hope.
I still need to use a walker, my speech is slow and slurred, and I continue to battle chronic fatigue. I also require daily workouts and physical therapy. But seeing improvements in any category, especially an important one like falls, is encouraging.
As a community, we still have a long way to go for a cure or even a universal treatment. But I am hopeful that we are heading in the right direction in our fight against FA.
It’s easy to focus on negative things. It seems like bad things are louder and get more attention than good things, especially when it’s a quantifiable measurement I have to document daily. FA’s progression is relentless. I can see it everywhere in my life. But I need to force myself to see the areas of my life that aren’t affected as much, or are improving, and focus on the positive things, too.
I encourage every FA patient to keep a fall log. It can help you to focus on the reality of one aspect of your disease. Be detailed with your log: Write down the day and time that you fell, where you were, what you were doing, and how you had been feeling that day (fatigued, sick, rushed, distracted, productive, etc.). This can help to identify patterns that hopefully might prevent future falls. It also can help to remind you of the “good days” when you didn’t have a fall.
I know that falling isn’t the only indication of FA progression, and it’s not the only factor that describes how your FA may have felt on a particular day. Circling “yes” or “no” doesn’t do justice to the hard days without falls. But it is easy to do at home and helps to track progression.
Being informed and choosing to stay positive is the best way to approach a progressive disease, in my opinion. I lived with dark depression at the beginning of my FA journey, and it didn’t help in any aspect of my fight against the disease.
I am aware of the realities of my disease and how I likely will progress. But choosing to focus on the good helps me endure all of it with my sanity intact.