At least, they shouldn’t be. But here we are… Why is the use of medical devices stigmatized? I recently found out someone I know has been struggling with their mobility. Rather than sink to the level of using a walker or wheelchair*, they choose to stay home most days. It’s sad to me when people STOP living their lives to the fullest rather than use a medical device. *But this wording alludes to the real problem, right? The need for a medical device seems intrinsically tied to shame. We feel embarrassed to be vulnerable, to have a visible handicap. I have a lot of empathy for anyone resistant ..read more

The last few weeks have marked the start of a new year but also brought a lot of change for me, at least in my day-to-day life. For several years now, I’ve worked out in a gym with a physical trainer. But at the end of December 2023, I started going to physical therapy appointments twice a week to strengthen my ankle, which I injured last year. After taking several months to heal, it is weak and unusable – though improving, slowly but surely! My regular exercise was already time-consuming. Now, catering to my body’s needs by maintaining and/or activating important muscles – exercising at the g ..read more

I recently wrote an article about my disability journey for my local newspaper. Click here to check it out! A young man about to graduate from a nearby school with a physical therapy degree then contacted me; serendipitously, when the article was published, he was working on a project which involved interviewing patients with neurological conditions. There were, of course, many questions about Friedreich’s Ataxia – when/how did my symptoms appear and develop? How do I describe the condition? etc. Questions about my interests, social life, college major, etc. were mixed in, too. It felt humaniz ..read more

Last weekend, I attended the Friedreich’s Ataxia symposium in Philadelphia, PA for the first time since before the pandemic. My dad and boyfriend came for physical and moral support. The event line-up hasn’t changed in a while. (Click to read about the 2019 symposium.) The weekend began Sunday with a rideATAXIA fundraiser, followed by a meet & greet session that evening, then the conference lasted all day Monday. At the ride, over $400,000 was raised for FA research. A memory popped up on my Facebook page that mentioned $215,000 raised at this event in 2014. I hope this indicates that our ..read more

We pressure ourselves to fit in a certain ideal, able to do certain things. For each of us, the standards vary. For the highly athletic person, perhaps it’s running X miles a day. For the average person who exercises, it may be the ability to lift X pounds on certain machines. For a NON-gym rat, it could be taking X number of steps each day. These “self-standards” can be positive and negative. We should challenge ourselves to stay active and healthy. If my trainer hadn’t been testing my limits and pushing me to them for the last 10 years, I would be further along in my Friedreich’s Ataxia dise ..read more

As I type this, it’s my second day taking the only FDA-approved medication for Friedreich’s Ataxia – Skyclarys aka Omaveloxolone. For those who aren’t familiar with the disease: Friedreich’s Ataxia causes progressive damage to the spinal cord, peripheral nerves, and the brain, resulting in uncoordinated muscle movement, poor balance, difficulty walking, changes in speech and swallowing, and a shortened lifespan. The condition can also cause heart issues. FA tends to develop in children and teenagers and gradually worsens over time. Although rare, it’s the most common form of hereditary ataxia ..read more

After taking the new medicine called Skyclarys for Friedreich’s Ataxia for a little over one month, I can share some updates and observations. Like the condition itself, these meds affect each patient differently, and our experiences all vary. I haven’t noticed any changes to my balance and coordination, two major things impaired by my disease. But my lack of mobility and terrible dexterity didn’t develop overnight, and I expect it could take several months if not longer to see real improvements there. There are no changes to my eyesight, hearing, heart health, or other miscellaneous things af ..read more

As I type this, it’s my second day taking the only FDA-approved medication for Friedreich’s Ataxia – Skyclarys aka Omaveloxolone. For those who aren’t familiar with the disease: Friedreich’s Ataxia causes progressive damage to the spinal cord, peripheral nerves, and the brain, resulting in uncoordinated muscle movement, poor balance, difficulty walking, changes in speech and swallowing, and a shortened lifespan. The condition can also cause heart issues. FA tends to develop in children and teenagers and gradually worsens over time. Although rare, it’s the most common form of hereditary ataxia ..read more

Lately, life has been harder for me than usual. Having a rare genetic condition (Friedreich’s Ataxia) that makes me clumsy and uncoordinated is bad enough without an ankle injury to boot. (pun intended, since I’m in a boot right now…ugh!) In Sunday School yesterday, we read Acts 9, which includes Saul/Paul’s infamous conversion story. Saul, who persecuted believers in the early church, was called by God to follow Jesus and share the gospel message with gentiles. If you read the whole thing, you’ll see it was literally a “come-to-Jesus-meeting.” Among the countless themes and observations I fin ..read more

Life would be easier if things never changed, huh? I don’t think I would wish for it to be that way, because I can look back and appreciate how a lot in my life is better than it once was. But with a progressive disability, I can’t help thinking of the past a little wistfully. Remember when I could do XYZ? If only I knew how blessed I was! Since starting this blog in 2017 and starting to share about my condition, Friedreich’s Ataxia, I’ve maintained a lot of abilities and lost some, too. Recently, I tore a ligament in my ankle, or so the doctor suspects. As I type this, I’m sporting a clunky b ..read more