A timeline of my Friedreich’s ataxia progression, part 3
Taking part in a clinical trial, using a walker, and handling changing symptoms
Last in a series. Read parts one and two.
Since our family was complete and the pregnancy chapter of my life was done, I decided to reclaim my body and focus on physically fighting Friedreich’s ataxia (FA).
In May 2018, I was communicating with a clinical trial coordinator who was enrolling for an efficacy phase at Emory University in Atlanta when one of my biggest fears was realized: I fell and obliterated my ankle. Now that my physical therapy was put on hold, I was no longer a candidate for the clinical trial (which required a stationary bike test and a timed walking test), and I was stuck in a wheelchair while I recovered.
That recovery seemed miserably long, but my physical therapist gave me numerous exercises to do from my wheelchair. After gradually learning how to walk with my reconstructed ankle, I was again walking independently by July 2018.
My doctors cleared me to participate in the clinical trial, so I went for my qualifying visit in August. I was accepted into the trial, which was structured as a 48-week, double-blind, placebo-controlled study. For the rest of 2018 until July 2019, I took flights from my home in Austin, Texas, to the Atlanta trial site, all while not knowing if I was getting the active study drug or a placebo.
Having my symptom progression meticulously quantified during the trial proved to be emotional. In January 2019, my balance was noticeably worse, so I reluctantly decided that it was time to begin using a walker full time. I made this decision for several specific reasons: to prevent another catastrophic fall, preserve my dwindling energy, and increase my independence.
I know that seems backward, but I noticed that I’d been opting out of more and more physical activities when I wouldn’t have an adult to assist me. Becoming dependent on a mobility aid, somewhat paradoxically, let me continue to be an independent adult, regardless of who was with me.
That’s not to say that my path to accepting my loss of balance was easy, seamless, or exciting. It was the most sobering and heartbreaking thing I’d ever endured, and even now, more than four years later, my relationship with my walker is extremely complicated.
But it’s affected my life positively, affording me many adventures by maintaining my safety as I walked. These adventures have included an 11-day trip all around Italy with my husband, Kyle, to celebrate our 10th wedding anniversary, as well as countless park play dates, sporting events, beach vacations, and trips to Disney World.
In August 2019, my 48-week participation in the second phase of the clinical trial concluded, and I elected to enroll in the open-label extension phase. In this, I’m undoubtedly taking the active study drug. In the 40 months I’ve been taking it, so much has happened.
We moved to our dream house. I got an accessible parking placard. I acquired a four-wheel walker that provides more stability and the option of converting it to a transport wheelchair, which I opt to use when the terrain is rougher or when I know my body will get tired. I bought a Great Dane to train as a mobility assistance service dog. I got COVID-19 twice. I fell and broke my foot, requiring another recovery stint in a wheelchair. I fell and got a deep bone bruise on my pubis, a bone in my pelvis. Peripheral neuropathy became a troublesome part of my life. My scoliosis became a constant source of dull pain.
When I first started learning about my progressively degenerative disease, it was explained like this: Your rate of progression will stay relatively consistent. If you got 5% worse last year, you can expect to be 5% worse next year. But factors such as pregnancy, exercise, and medication can influence the progression percentage.
I chose to fulfill my dream of becoming a mother, knowing that it might negatively affect my progression. I go to physical therapy every week in the hopes that it’ll have a positive effect on my progression. I take the drug from the clinical trial extension every single morning, hoping that it’ll have a positive effect on my progression.
Since I don’t have a control-version Kendall who has made the opposite choices for comparison, I can just keep trying to make the best choices with where I am now.
In the near decade since my diagnosis, I have laughed more than I thought possible, cried more than I thought possible, experienced more than I thought possible, missed out on more than I thought possible, learned more than I thought possible, and loved harder than I thought possible. In short, I have redefined my idea of “possible,” and for that, I’m grateful.
“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” — Romans 8:28 (NLT)
Note: 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. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
What drug trial did you take part in?
Vikki A. Stefans
Thanks for speaking up about this! Too many people still simply stop doing things they love instead of using assistive and adaptive technology. You make the emotions around that understandable but also highlight the benefits of using rehab equipment to increase independence and participation.