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1 month ago | 
friedreichsataxianews.com | Kendall Harvey |Marisa Wexler |Elizabeth Hamilton
As I’ve often discussed, there is no handbook for living with a progressively degenerative condition like Friedreich’s ataxia (FA). However, there are good general rules of thumb that everyone can follow, such as safety first; if at first you don’t succeed, try and try again; tomorrow is a new day; and so on. Yet, in life with FA, the risk of failure can be costly.
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1 month ago | 
friedreichsataxianews.com | Matthew Lafleur |Lindsey Shapiro |Kendall Harvey |David Riley
Note: This column describes the author’s own experiences with Botox injections. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.Living with Friedreich’s ataxia (FA) is a journey that tests the limits of one’s resilience. The progressive nature of this rare neurodegenerative disease leads to symptoms that make daily activities increasingly difficult.
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1 month ago | 
friedreichsataxianews.com | Jean Ker Walsh |Matthew Lafleur |Elizabeth Hamilton |Kendall Harvey
Before my neurology appointments, I practiced tasks like touching my forefinger to my thumb, forming the “O” of the “OK” symbol. Part of my exam was, and still is, measuring how quickly I can do that repeatedly. I was determined to excel in my neurological exam. Now, I look back and laugh at my younger self. What was I thinking? I’m pretty sure I just wanted good news, and my way of trying to control that was to make those Os as quickly as I did the year before.
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2 months ago | 
friedreichsataxianews.com | Jean Ker Walsh |Matthew Lafleur |Kendall Harvey |Elizabeth Hamilton
Walking my service dog, Wendy, in the winter poses quite a challenge. When I take her out, she’s clipped to my wheelchair, which I use because of my Friedreich’s ataxia (FA). Then she jogs alongside me. Like most dogs, Wendy is thrilled when she knows she’s going out. Wiggling her backside enthusiastically, she sidles up next to me so I can attach her leash. It’s enjoyable for both of us. I love being outside exploring my neighborhood, and there are so many scents for Wendy to smell.
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2 months ago | 
friedreichsataxianews.com | Kendall Harvey |Marisa Wexler |Jean Ker Walsh |Elizabeth Hamilton
There’s a lot that comes with the territory of having a visible disability, especially if you choose to live your life out loud rather than hide. I never imagined I’d have to make that choice until I was diagnosed with Friedreich’s ataxia (FA) in 2013. Back then, I understood the basics of the progressively degenerative neurological condition, but I now realize that I had no real idea what was in store for me.
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2 months ago | 
friedreichsataxianews.com | Elizabeth Hamilton |Steve Bryson |Kendall Harvey
I found myself growing uncomfortable as I stood in front of the group. Not because all eyes were on me as a presenter, but because I’d realized I was out of alignment. As the parent of a 12-year-old who was diagnosed at age 8 with Friedreich’s ataxia (FA), I know that life will sometimes pull me off course. But this feeling was more than that. I’d lost sight of the bigger picture of my life and needed a plan to ground myself.
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2 months ago | 
friedreichsataxianews.com | Kendall Harvey |Steve Bryson |Matthew Lafleur
So much of living with a progressive, lifelong disease like Friedreich’s ataxia (FA) is mentally processing and accepting the physical changes it brings. But with the widespread degeneration of my body and the resulting decline in my abilities, that can feel like an overwhelming task at times. Every night, while brushing my teeth and getting ready for bed, I think about how my body performed that day.
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2 months ago | 
friedreichsataxianews.com | Kendall Harvey |Katherine Poinsatte |Jean Ker Walsh |Elizabeth Hamilton
At the beginning of my journey with Friedreich’s ataxia (FA), when my balance, coordination, and associated abilities were starting to decline, I felt like everyone was watching me. Because I’d decided to be vulnerable and openly share my journey with the condition, I felt that people expected to see FA when they looked at me. However, in the early days of my public walk with FA — no pun intended — the disease wasn’t easy to spot if you didn’t know what to look for.
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2 months ago | 
friedreichsataxianews.com | Steve Bryson |Kendall Harvey |Margarida Maia |Elizabeth Hamilton
Skyclarys (omaveloxolone) improves heart function in Friedreich’s ataxia (FA) by reducing abnormal heartbeats and stabilizing heart rhythm, a study in a mouse disease model of severe cardiomyopathy concluded. Data also revealed sex-specific disturbance in the heart’s electrical activity and responses to Skyclarys treatment in these mice.
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2 months ago | 
friedreichsataxianews.com | Jean Ker Walsh |Kendall Harvey |Elizabeth Hamilton
When I was diagnosed with Friedreich’s ataxia (FA) in 1981, I was a sophomore in college. I lived in a newly renovated dorm that was wheelchair accessible, and, naturally, a woman who used a wheelchair lived with us. I did everything I could to avoid her. I remember heading for the side door when I saw her heading for the front door so I could escape crossing paths with her. While recalling that makes me cringe, I know I was never mean.
