During the final hours of the 2019 Friedreich’s Ataxia Symposium in Pennsylvania, the Friedreich’s Ataxia Research Alliance announced that the pharmaceutical company Reata had achieved statistically significant positive results in its Phase 2 trial of omaveloxolone (also known as “omav” at the time and now sold under the brand…
Defining Yourself — Jean Walsh
Jean Walsh hails from Massachusetts. You will find a mental health perspective in her writing, reflecting her two mental health graduate degrees. She has years of work experience, the most pertinent being her experience as a grant writer. Jean was diagnosed with Friedreich’s ataxia (FA) when she was 19, and has been an avid FA volunteer since. She is 40 years into her journey with FA and so has a lot of experience to share with her shared FA, rare, and chronic disease communities.
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I have started fundraising for my next service dog so Wendy, my current service dog, can retire. It has not been easy, but I know it’s time. Wendy is always happy to help me, mainly by picking up things I drop, and she is always spot-on in public — except…
Last week, I had my annual echocardiogram, known informally as an echo. My doctors want to keep an eye on my heart function because I have Friedreich’s ataxia (FA), and one of its more serious symptoms is cardiomyopathy. Monitoring my heart is crucial to detecting any changes early and…
If you’ve seen me fall or heard me talk about it, the first thing I usually say is “I’m OK.” I’ve even said that when I had a broken shoulder, when I clearly was not fine. Since no one could see my broken shoulder, I hid the pain. When I…
Last Monday, my husband, Dave, and I were on the last leg of our journey home from vacation in the Shenandoah Valley. The GPS interrupted our Audible book and said, “Take exit 90 toward the Massachusetts Tournpike.” That’s not a typo — the GPS mispronounced turnpike. Hearing the mistake, we…
The other day I was listening to a podcast. (I think I’m addicted to podcasts.) The interviewee had post-traumatic stress disorder (PTSD), though she preferred that it be called post-traumatic stress injury (PTSI) because she felt she was having a normal reaction to a horrendous trauma. During my years with…
A few days ago, I looked at vacation pictures from our trip to Hawaii in 2007. It was a wonderful vacation — not perfect, but fun and relaxing. We watched postcard-perfect sunsets over the ocean, framed by palm trees, glowing in pinks and oranges. We relaxed on the beach, swam…
This morning, like many mornings before it, I pulled out gym clothes as my all-day outfit. Gym clothes are comfortable and easy to put on. I work out most days, so gym clothes are a reasonable choice. This summer, I’m going for T-shirts and lightweight joggers. To me, that’s boring.
It’s summertime, the season for travel. There’s so much fun at every stage: the planning, the doing, and the reminiscing. I love to travel, though I have Friedreich’s ataxia (FA), which means I need extra planning and consideration when I do it. Symptoms of FA include poor coordination…
A week ago, I woke up early on a slightly cloudy, humid Sunday morning. I had butterflies in my stomach as my husband, Dave, and I drove 40 minutes to a fundraiser for my patient organization. I have Friedreich’s ataxia (FA), a disabling and life-threatening rare disease. Dave has…
This morning I was practicing my pre-getting-out-of-bed routine. I take a pill, do breathing exercises, and meditate for about 10 minutes. I mostly follow this routine, but not always. It’s my way of trying to start the day with a clear mind, and it almost always leads to a better…
About 12 years ago, I went dog mushing with my local disabled sports organization, Northeast Passage. It was a once-in-a-lifetime experience. Those of us who participated have various disabilities, and we got to learn a bit about mushing a team of dogs. Then we got to try it…
I am a work in progress, just like everyone else in this world, so I need to give myself grace. The meaning of grace is essential. Several of my columns, including the previous one, have drawn the conclusion that I should grant myself grace. I wanted to further…
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