Shoes are essential for making a statement on one’s wardrobe and personality. This is especially true for me as a young woman with Friedreich’s ataxia. I want to be able to fit in, yet still feel comfortable and safe. It’s been difficult to find a pair of shoes that best…
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Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me, fatigue is a major symptom. Before I experienced FA, I thought I understood what “fatigued” meant — being really tired. Boy, was I wrong. Oxford Dictionary’s definition of tired is:…
“Don’t hold a glass over the flame/Don’t let your heart grow cold/I will call you by name/I will share your road.” –Mumford & Sons. “Matt?” my professor repeated for who knows how many times, interrupting the imaginary…
It wasn’t until a fire alarm at my hotel this past weekend that I realized the complete disregard for people with special needs in emergency preparation. I hadn’t been in an evacuation situation since before my diagnosis, so this was an eye-opening experience. The alarm went off at…
The three-day Labor Day weekend often means relaxing and spending time with people you may not often see. This holiday, my fiancé Justin and I visited his hometown near Scranton, Pennsylvania, to see family and friends. It had been two months since our last visit. It was a…
Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every day. I was prepared for the physical changes that would come with FA, but the mental and emotional stress has surprised me. It is a factor in almost all of my…
In my memory, we were always lithe and sure-footed. Two shadowy cat burglars, but with no inclination to steal. So, not burglars; we were spies. Spies! My aunt and uncle and their kids arrived at my house one Saturday. Our families got together almost every weekend…
In Friedreich’s ataxia (FA) care, we don’t really have treatment options. There are clinical trials taking place to work on treatments and hopefully one day, a cure. But until then, we are left at the mercy of this progressive, degenerative disease. Wow. That is heavy. And disheartening. The…
When you plan a destination or a weekend getaway, it is wise to make travel and transportation arrangements and detail an itinerary of what you will do while on your trip. However, when you have a disability, extra steps are involved in planning. My planning includes three components: plan in advance,…
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My Big (Literal) Break
Editor’s note: This post includes images of a bone break that may be disturbing to readers. For some time now, I’ve needed to use a walker (or another mobility aid). My physical therapist, Kelli, has been encouraging me to use my rollator around the house. It is…
I gritted my teeth. The August sun in south Louisiana pounded unrelentingly onto my head. Drops of sweat trickled down from my hairline, along the sides of my face. I’ve never really sweated very much, but since I started regularly riding a recumbent tricycle, I’ve found…
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My Favorite Age Is Now
I know that birthdays can be tough for some patients living with Friedreich’s ataxia. It can be a reminder of how much this disease keeps taking from us each year. I completely understand. It is hard not to get down on the things we still can or can’t do. However,…
Recent Posts
- How I field the question, ‘Why are you in a wheelchair?’
- Scientists link shrinkage of key brain pathway to FA motor symptoms
- My to-do list always looms, but self-compassion helps me manage
- How FA influenced our decision when it was time to buy a car
- I shed the ‘How does she do it?’ dream to be a helpful person who needs help