Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food and Drug Administration approved a new treatment for spinal muscular atrophy (SMA) that will be available to patients soon. What is…
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The year 2020 will mark stories of history for generations to come. This year continues to call attention to areas of opportunity, shortcomings, and perhaps failures across many areas of life — from global economic concerns to neighborhood-specific best practices. Of all we can and will…
One of most difficult aspects of Friedreich’s ataxia (FA) is thinking I don’t deserve any good that comes my way. Being diagnosed with a progressive illness convinced my brain that I would never have the life I imagined. It wouldn’t be worth it to figure things out…
Last week, my husband and I decided it was time for a change of scenery from our COVID-19 quarantine in Austin, Texas, and we rented a beach house on the coast for a week. We had worked out all of the logistics and packed everything so we could remain…
I’m not patient. Not at all. I think it’s funny that people with debilitating health conditions often are seen as being patient and tolerant. We seem to be superhuman, persistent, and serene in our daily activities, no matter how long they take or how much we…
I keep thinking about the saying “the grass is always greener on the other side.” This is usually thrown around when you wish for something. We get it set in our minds that if we could just cross the figurative fence, grass would be greener and life would be better.
I remember getting to the pool early one summer morning before swimming lessons began. I wasn’t a swim teacher per se; I was more of a teacher’s assistant. The head instructor had me and the instructors my age do a lifeguard training exercise.
With Friedreich’s ataxia (FA), I am used to the reality that my abilities are progressively deteriorating. I am losing coordination, dexterity, cellular energy, and strength every single day. I am all too aware of the ticking clock that has started the countdown on my ability to do just about…
“Well look at that,” the doctor remarked, obviously impressed. The wonder in his voice made me grin a little bit. Any positive physical change with progressive Friedreich’s ataxia is a little victory. I had just swung my legs off the…
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Push to Get the Results You Want
I’m confident we can all agree: We have no idea what tomorrow may hold. Whether we are talking about the stock market, our individual health, or simply the weather, many things can change drastically from one hour to the next. Speaking of weather, that…
Friederich’s ataxia (FA) has taught me a lot about intentionality. As an FA patient, I must be intentional both physically and emotionally to function at the capacity I desire. I used to take my physical abilities for granted before my FA symptoms started. I practiced hard at swimming,…
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Why I Choose to Use a Wheelchair
My alarm goes off at 6 a.m. I open my eyes to my service dog, Zeego, who still has his eyes closed. He is definitely not ready to get up yet, but I am. With a hand on my SuperPole for balance, I…